Topic: Need opinions on What happens during Sleep that makes me feel so much worse????
springshowers
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posted
Now that I am doing a lot better overall this issue is now so much obvious as I can see a contrast now.
When I fall asleep. Whether it be a nap or a night. Within just an hour or two or three I can wake up to use the bathroom or such and I feel horrible. Fatigued and more pain and achy and icky.! Not sure how to describe it. ITs that Feel like a Truck Hit Me feeling.!!
WHen I lay down to sleep I am fine. And I wish I could just stay that way. Lately worse than ever I have a fear of falling a sleep because I do not want to wake up feeling that way.
I have less insomnia now and that is a good thing.
I used to call this the boogy man. I used to be so much sicker so I just lumped it all in. Now that I feel better this is REALLY bothering me.
I was thinking adrenals but not sure. How could just a a few hours in sleep mode make such a difference?
ANy ideas that may help me solve this puzzle would be so great. I would be so HAPPY!!! There has to be a reason for this to be happening. And it is consistent. Every time I sleep or at least 90 percent of the time.
THanks for any ideas. I want to find this boggy man and chase him away..
[ 05-14-2010, 02:44 AM: Message edited by: springshowers ]
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posted
I wake up feeling bad if I eat simple carbs at night. I no longer battle Lyme, but I do have low blood sugar and if I eat simple carbs, my blood sugar crashes a couple hours after I go to sleep, enough to wake me up.
It also could be your body detoxing at night??
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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According to hubby's LLMD bartonella multiply every 24 hours and they do this at night.
Hubby wakes up almost every night with dry heaves, tremors and some mild sweats. This has been going on for the entire 9 years since he has been sick. He has recently moved his bart meds and takes them all at suppertime. Moving the meds changed the time he wakes up at night -- it is a couple of hours later than it used to be.
When he was really sick his spells were much worse and they were more frequent -- happened 3 or 4 times daily.
I think his spells are a combo of when the bacteria are multiplying after the meds wear off and also tied into the body detox cycle -- elevated bilirubin from dieoff of red blood cells is an ongoing issue with him and that causes nausea. The liver switches detox modes around 1 -3 a.m. per the Chinese medical system.
I recently started giving hubby Japanese knotweed when he has his nightly spells and this seems to be helping him to feel less sick the rest of the night. According to Buhner that herb works on bart.
I don't remember seeing that you ever actually took rifampin or any of the fluroquinolones for bart?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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springshowers
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Well I am open to anything and any ideas.
I do not mind your answer.
I have been on Rifampin and such earlier in my treatment and I did not have more issues with bart (I think) later.
So though.. I know its not diet. I have tested that out and Even though I do have a bad response to sugars and carbs too and feel worse the next day that is not what I am talking about.
Also..It happens even if I take a nap. It happens withing the 2 or 3 hours after I fall asleep period.
Even in the Day and no matter when I take my meds?
I have tried extra pain meds or anit inflammatories and just anything that might break into the affect.
Once I get up and get moving around I am much better.
I have to think it has to do with what happens to our organs and metabolism and immune system etc when we sleep.
I appreciate the response bea but I do not think its the bugs cycle for me. But who know for sure?
I wish I could pin it down. I am going to really get my doctor talking to me about this one. This could alleviate so much for me now that my days are clearer.
I wonder wonder.. I really still a perplexed for sure...
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posted
Similar thing happens to me. Pretty crappy on the days that I feel so bad all I want to do is sleep. One doc had me do a sleep study and that showed nothing other than I have excessive daytime sleepiness (eye roll). I'd love to have an answer to this, too.
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If it happens in the daytime also, then it sounds more like something is not working correctly when your body tries to transition from REM to non-REM sleep. Generally the body has a 90 minute or 2 hour sleep cycle.
Can't remember exactly, but think I have read that serotonin and melatonin are needed to initiate sleep. I think acetylcholine is involved in either keeping you asleep or helping switch to different stages of sleep. Alzheimer's patients often have sleep disturbances because of choline/acetylcholine deficiencies if I remember correctly.
At least that gives you something else to research.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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feelfit
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Interesting Bea,
My symptoms are waaay worse at night, during the night....constant awakening, sore feet, gastro and nausea worse.
I attributed these sx to bartonella as well. makes sense, i didn't know that the replication was every 24 hours.
Showers...sorry, no answer other than this..
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posted
Wow, I get this too. I wont even take naps during the day because I don't want to wake up feeling SO sick. It doesn't happen as often anymore since I've been treating Lyme, but I still get it once in awhile.
I wake up in the middle of the night and I am so sick it's scary!! My head feels like I was heavily drugged, I hurt all over, feel so weak, and just an all over feeling like I'm going to die.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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glm1111
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Spring,
Insomnia and disturbed sleep can be a symptom of parasites and worms. I know you have done a lot of tx, but maybe trying some antiparasitic herbs like wormwood, green black walnut hull and cloves could help.
Hulda Clark has lots of info on her parasite cleanse and maybe you could give this a shot. Or maybe try some of the allopathic meds for parasites like Ivermectin etc. Just thinking out loud.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Oh and some times when I wake up it feels like my insides are vibrating really bad. Some times a really bad upset stomach too. It's awful.
I have no idea what would cause this.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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springshowers
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I did some common research and FMS and CFS came up a lot on this subject. Here are a few items I found along with Many More I am not posting and many blogs of people with ME MS FMS CFS and Autoimmmue type disorders all complaining of this same issue.
I am thinking there is a cascade of things that happen during our sleep depending on how well we sleep. According to the reading I started this is true and MANY of our systems are out of wack or not working properly that in turn do things like increase other systems and in turn inflammation may increase thinking the wrong thing and our endocrine systems too not working right and it all ends up making US FEEL worse DURING our Sleep and or right when we wake UP.
The resources say there needs to be more research and attention to this and how to resolve it and for now they all talk about how to get the right sleep and also work on our type of sleep and balancing our hormone systems and immune systems etc..
I am hoping to find someone how has more specific knowledge on the mechanism and how better to reverse it.
For now I will be changing as many habits as I can around sleep. I have done this in the past but did start slacking as well. I can try that and also not eat at all at night and do other different things. I am going to experiment all thew while I am on supplements for adrenal and thyroid and immune balancing.
I wish there were better answers or A answer.!!!
Improving Sleep Quality Despite Fibromyalgia or Chronic Fatigue Syndrome
For example, we know that both CFS and FMS by their very nature prevent restorative sleep. This not only leaves us feeling tired, but acts to worsen our illness in direct physical ways. For example, poor sleep turns up the ``volume knob on'' on our central nervous system `s pathways that transmit and augment perceptions of pain. But, we don't know why this happens, and there's little research on this important topic. Indeed poor sleep itself can cause inflammation, as can hardening of the arteries (arteriorsclerosis) and even psychological depression/, However, we don't yet know what we should do with this knowledge. Would suppressing inflammation help our body heal, or are these inflammations part of the body's self-defense? Again, the research we need is not yet being done.
They usually arise in the morning or after a nap unrefreshed (in fact, they often say they feel worse upon arising than they did before they went to sleep. After having CFIDS for a while, another pattern emerges, one of insomnia. These people have difficulty falling asleep at all times, have difficulty staying asleep, and typically sleep less than 5 hours a day. Their sleep is also dreamless, restless and light. But, unlike the earlier pattern, they do not feel sleepy during the day and cannot nap. Consequently, they become exhausted from lack of sleep. Both groups demonstrate a characteristic pattern of SWS patterns on EEG, what changes is the quantity of sleep, the , and the increase in severity of other symptoms. When both groups of CFIDS patients have in-depth sleep studies done, one interesting fact emerges; our sleep patterns at night look like a person who is awake during the day and our daytime awake patterns look like a person who should be asleep. No wonder we can't think! Our brains are asleep!
Treatment is discussed as normal sleep aids to help us sleep better??
CFS/FMS blog
Well, sorry to go on about my MS again, but I've always found that over sleeping made my symptoms worse, and that lack of sleep improved them. MS is an auto-immune disease where flare ups are associated with inflammation. I got very ambitious at one point and tried out a regimen of 4 hours sleep every night, supplemeneted with a nap here and there in the day. It was Ok in that my walking was a bit better, but it was not Ok in that I couldn't function or pay attention or do anything much 'cos I was so sleepy...
Sleep Disturbance: About 80% may wake up three or four times a night, or in some cases you don't wake up, but in the morning you still feel like a truck ran over you. The reason for this is that subliminal seizures kick you out of stage 4, Delta sleep, to stage 1 sleep so you can't sleep deeply and wake up not rested.
Lack of growth hormones means serious trouble. GH and stage 4 sleep are interdependent. No growth hormone - no stage 4 sleep; no stage 4 sleep - no growth hormone. And no stage 4 sleep and you wake up in the morning tired and worn out.
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karenl
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Could it be toxins from the matress? I had to get rid of my bed because of MCS. Mold in the air,sleep apnea? Allergy to bedding?
Are you sleeping in an area which is not good for you, you might test your bedroom with the biotensor.
The Chinese attribute each hour to a specific organ, is it always the same time when you wake up?
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posted
Yes...I hate this! I identify with what Kathy was saying completely. I wake up feeling awful. Heart racing, dizzy, shaky, nauseous etc. I call it the dying feeling because it is so scary and it feels like you are going to die. I really hate it. I also avoid napping because of it. When it happens it is an hour or two after I fall asleep.
I notice that it happens more when I have done too much but sometimes it happens for no apparent reason. It won't happen for a month or so and then it might happen several times in a week. There seems to be no rhyme or reason to it.
It is definitely not my mattress because it happens no matter where I am sleeping. It can be in my room or on my couch or at someone elses house.
I can't seem to pin point a reason for it. Doesn't seem to matter if I have eaten before bed or not etc.
I have wondered if I could have sleep apnea or something but I don't know. I get the feeling that it is probably not. I know some people have had sleep studies that turned up nothing though so it seems like this may be something else. I am sure for some it could be but that doesn't seem to explain it for everyone.
If anyone figures this out I would be happy to know what it is. I really hate it and would love to know what causes it so I could hopefully stop it from happening.
Take Care! Pam
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
Karen is asking an interesting question about whether you're being exposed to anything in the bed environment.
Just for the record, I have Lyme only, fibro presentation, and I do not have the experience you're describing.
Posts: 13116 | From San Francisco | Registered: May 2006
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I copied my post from another thread to post here. If you feel awful in the morning, you might want to look-up 'Incline Bed Therapy' -- it helps with sleep and detox.
It was explained to me that the reason we feel awful in the mornings are b/c we have been laying horizontal all night and that our immune systems/detox abilities have been turned off.
It has been suggested to me to try 'inclined bed therapy.' I personally have not tried this yet, BUT 3 other lymies that I know do this with their beds and SWEAR that it works.
posted
I'm so relieved to hear other's stories. I wake up every day feeling like I'm dying. I have not dreamed in many, many years. I really miss it too.
I have so much compassion now for the elderly if they feel like this every time they sleep.
The thing is, though, my Mom is going to be 85 and she feels really good physically, but is in ALF for "dementia-Alzheimer's type." I love her so and she doesn't understand lyme. I wish my old Mom would come back, miss talking to her.
sparkle7
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It seems from the posts here that it can be several things...
I did research on the growth hormone issue. My level was extremely low. It can be caused by alpha brainwave intrusion into delta while sleeping. It's something that's common with fibromyalgia. I did some bio-feedback for a while & took HGH shots.
What can help if you are in low budget land is to use CDs that have bi-naural beats. It's called brainwave entrainment. You can leave them on while you are sleeping at a very low volume. They have a bunch with just delta frequencies. Some have white noise or music. It depends what you like.
It also helps to meditate or just sit with CDs that use binaural beats to improve brain function in general. They have lots of them you can choose from. Try http://www.hemisyncforyou.com/
Another issue may be detoxing at night. It seems that this is a natural time for detox & maybe the body is over burdened...?
For others - it could be a bart cycle?
There's also issues of the pineal gland, EMFs, etc. I read that fluoride effects the pineal gland - I believe that this gland also produces melatonin.
Just some thoughts without doing an in-depth search for references...
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springshowers
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Great thanks for the ideas and I am glad I am not alone. This puzzle piece has always perplexed me.
I am going to try the inclined bed idea for sure.
I will say I am not positive about my "environment" as I have visited a friend and family before for a week or two and somewhat felt better? But it was not long enough and I just cant say and I was not that much better? But its a possibility.
I have gotten two air purifiers and one that was recommended to me here.
I probably need to rule it out better. How can I do this?
Sleeping outside in a tent was an idea I had.? or I have this storage room that matches the house that is the size of a bedroom and has a window and all.. I was going to clear it out and sleep in that. Just ideas.
Not sure how to rule it out. Ya know?
Well. I know this is really bothersome. Sounds like others have it and have it no matter where they are and what they do or what they eat and at nap time like me too.
I really want to figure this one out... Thanks all
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A suggestion for getting to a deeper sleep
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karenl
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Concerning bedroom I posted the website of Dr. Ziem, let me know if you do not find it.
She recommends tiny bedroom, nothing in, you can purify the air, also buy something to cover the carpet.
I did feel the fire retardents which are in every mattress except you have a Doctor's order. You can test for mold. The tent will have more fire retardents than your bed and the outside air has mold spores too. You write. " I have visited a friend and family before for a week or two and somewhat felt better? But it was not long enough and I just cant say and I was not that much better? But its a possibility."
You need to figure out, probably their house was better but also not good.
In my case it was extreme, I felt horrible at home and great outside especially with sports when I got fresh air. I thought I am crazy. Has your tongue a bluish line on the sides? This is toxic.
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karenl
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I had vibrating and throbbing and heart racing every night. Was so bad that I had to get up and walk and do some gym every night. After my 10 days on flagyl it is over.
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Not dreaming is a classic sign of vitamin B6 deficiency. P5P -- the activated form of B6 works better for some people. Be sure to also take a B complex if taking extra B6.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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springshowers
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Karen - I do not have the tongue symptom. I have no carpet as I tore it out and put in wood. I do not have vibration or racing heart.
I just feel horrible as in like extra pain and extra fatigue and that horrible "sick" feeling like the flu and weak and achy and stiff and just horrible.
Not sure how else to describe it.
I did not see the website of Dr. Ziem. SO let me know if you can post that again?
Massman. That product looks similiar to others I have tried and those sort of herbals and suppelements have sometimes helped a little with getting me to sleep a little faster but it has not helped with this issues I am having at all.
I am not sure if it is due to the depth of sleep? Or not?
I do have dreams for sure. ANd many in row. I do have to get up to pee often and that has been since childhood. No way around that one..
Its 12 47. I do not want to go to bed. This is not a good thing for me right now.
SO many other things have improved. If I could stay feeling like I do between 2pm and when I go to bed I will celebrate like crazy. The daytimes are so much better than before. I still can not push it but at least if I am just up and around I am OUT of bed. Yeah!! and if I take it easy I am ok. I am hoping the post malaise and energy will come back in time. For now I will take out of bed and feeling ok and clear and not HORRIBLE ALL the time.. Ya know?
I tilted the bed. My family suggested to sleep 15 minutes at a time and then get up for another 30 and do it again and keep doing it during the day if I have to..
I dont know how I can do that for sure or if I should try it.
Willing to try whatever I can and experiment.
I wonder if this will go away in time as not all the parts of the puzzle will get better as we get better I assume..
WEll I hate to say this . but goodnight
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WOW! I read the incline bed therapy article. I've been propping myself up on pillows for years, but my lower spine has taken a beating because of the pressure in that position. This would eliminate that ... I have episodes where I jolt awake gasping for breath, and my grandfather died quietly in his sleep one morning. I suspect he had central sleep apnea, and I seem to have gotten it too, probably neurologically related (and I hope I haven't lost too many brain cells as per the article).
Thanks for posting this.
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posted
I think there is hormone driven nocturnal diuresis, I think stress drives it, could be metabolic, psychologic, pain driven, could be excitotoxin driven. The final pathway seems to be hormonal for me. Enhancing aldosterone with evening licorice tea and/or licorice scotty dogs allowed me to begin to stay asleep four or more consecutive hours on a regular basis. I also take valerian, magnesium, and childrens liquid benadryl before and after(benadryl) getting into bed. So treating hormone, pain, anxiety and excess sympathetic nervous stimulation all together helps in my case.
Had suspected that benadryl might also have some similar actions to tofranil - sometimes used to treat childhood enuresis or bedwetting. Wiki site does show some structural similarity chemically speaking. Take a look. . .
I am not feeling so bad when I wake up. In the morning I am still very tired and feel like detoxing and need long time till I can get up, have coffee, normally I feel better only in the evening.
I still have intense throbbing in the most infected parts of my body during the night.
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posted
Thank you all for the info. Thank you, Bea, will buy some B complex and B6. Gonna read and re-read everything in this post. Will try to bed incline too.
I also wake up with a big gasp from my throat if I fall to sleep on my back. It happens on my back only. Is that sleep apnea?
Thank you, all, in advance. Happy Mother's Day to all the Moms!!
posted
"That product looks similiar to others I have tried"...
Yup they are all the same or "similar". Just like all massages + massage therapists are similar, like all basketball players are similar etc.....oh well....
(sarcasm above...) close only counts in horseshoes and hand grenades
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sparkle7
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FYI - asummers posted the info about the incline beds.
Seems interesting. I sleep on a foam mattress with magnets (very heavy) on the floor. I wonder how to do the incline thing from that? I guess I'd need some kind of board or ramp... Seems like a big Home Depot type of project.
Anyone try this? Does it really help? I did some research on inversion therapy. I was considering getting an inversion table but there are conflicting views about it. Some feel that it's too extreme.
There's a foam "body wedge" at the gym. I try to just lay on it for a while when I have a chance. You can also do exercises on it. You can also adjust the weight lifting bench to be at an incline & lay on it for a bit.
Sleep apnea can be very serious. I don't have it but I know someone who does. You actually stop breathing at night. People who think they have this should get it checked out.
This upsets the sleep balance for sure but it's not what I am feeling. I have lots of dreams, as well... So, it's not a vitamin B deficiency, per se. Might have something to do with methylation, though...?
My thoughts for today are maybe it's some kind of parasites that create toxins in the body. May be liver flukes or something else...?
Maybe they are active at night? Or our body has to process the toxins at night? I'm gearing up to try the simplified 5 methylation protocol. Maybe that will help?
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springshowers
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I do not think this is about falling or staying asleep.
So the products do not make sense to me and I have done a lot of them and they make me feel worse. Natural or not. I hate the side affects and affects.
I can get myself to sleep with meditation and natural things. I only wake lately to go to the potty.
But its that feeling of feeling sicker when I do get up for the bathroom that makess me know how fast after going to sleep by body is feeling so much worse.
This I think may be hormonal too.
I found these quotes online
"because blood flow
The body's level of cortisol drops at night
Plus, the levels of histamine rise
Body temperature rises naturally in the evening
Body pressure changes when we lay down
Hormone levels differ"
Thanks for the ideas on how to get to and stay a sleep. I just do not feel that is the issue regarding what is happening to me.
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springshowers
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Massman Do not take it so personally. I Know there is a difference in supplements. And I more meant that I am not thinking that taking something for sleep is going to help the issue I have.
Maybe some of you disagree but I have worked on sleep so much over the years and went from insomnia where I barely got slept to being able to sleep a much better now..And either way I feel worse when I do sleep even after an hour or two..
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I also feel horrible when I wake up in the morning. I don't wake up much during the night(that I know of) but, I know I don't dream. I was taking 3 meds for sleep, but my LLMD wanted me to wean off of them.
When I wake up I want to cry, I can't believe it is time to wake up. I feel hungover, have a headache, and like you it takes me until the evening to begin feeling better.
I have tried better sleep techniques with no improvement. I have had a sleep study and it shows no Stage 3/4 sleep and continual awakening, some from snoring, but not near enough to get a sleep apnea mask.
I also think if I could get a good night's sleep, I would be a lot better off. Funny thing, I get up at 6am to send my daughter to school, then I go back to bed. IF I dream at all, it is after that.....so I wonder if I get the best sleep when everyone is gone???
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massman
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If you ask for advice or outlooks or opinions here you will get them. I feel it is good as we all look at things differently.
I was wondering if your body is having a tough time transitioning into a deeper sleep and your body gets angry when it can't.
That is why I recommended what I did.
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posted
I'm late to this thread but just wanted to chime in that I have the EXACT same symptoms as SpringShowers.
The waking up feeling horrible has always been my number one complaint. I usually don't feel bad all day, it just takes 30 min to an hour to feel better. But waking up I feel like dying sometimes....I can't even get up to get my kids off to school anymore. Luckily my husband does this for me.
And naps are the worst! I seem to get deeper sleep during a nap but the waking up part is so bad that it about ruins the rest of my day.
I wonder if this is a lyme thing or maybe more due to adrenal fatigue, CFS, even heredity etc? The reason I wonder is my mom has had this too most of her life but she does not have lyme.
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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springshowers
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Thanks for ALL The ideas. I find too that after I go back to SLEEP IN the AM around 6am too.. That I finally feel like I am actually getting some sleep.
Odd Huh?
I though have to say that I put my bed up on one side like the Tilt Therapy Page recommends.
The past two nights have been a bit better.
Yes Massman. Maybe that is true. Maybe there are issues with the type of sleep or the depth or such.
I am not sure but have played around with various sleep medications over the last 10 years. Natural and not. And it has not made a difference as of yet..? I like others did not have a sleep study that showed problems.
So.?
I hope we can figure this out. Maybe if we all ask our doctors to really brainstorm with us on this subject we can figure it out.
TXLymie.. Exactly what I go through. Yes..
I am going to keep the bed tilted as the last couple nights I have noticed a bit of improvement but too soon to tell.
ALso.. I think I will MAKE Myself go to bed much earlier..
What time do you guys go to bed? I have trouble getting to sleep still but NOT near as much as before. I used to not go to sleep til 3am for many years and then I backed it up slowly over the years. Lot more work than you would think.
I am now backed up to around Midnight but have am working on it going to 10 or 11 next..
I hope that helps too ..
Blessings all
And thanks to everyone.. Lets keep on brainstorming..
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sparkle7
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Please keep us posted about the tilt therapy. It's an interesting idea but it would take me alot of effort to do it with my bed.
I've never gone to bed early - even pre-Lyme. I've always been a night owl. I'm not sure if it's detrimental. I just got tired of trying to adjust things & force myself. I've been going to sleep pretty late these days. Usually, after 4am...
I would probably make more of an effort to be normal if I "had" to be up in the am.
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massman
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posted
When is the last time of the day you regularly have anything to eat. And what is it usually ?
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springshowers
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I sparkle. Me too Always been a night owl. Always always. But I think it is a problem...
I do NOT have to get up in the AM but I think the Natural way of the Sun and Earth and Us humans is TO get up at sun up.. Thats what I think and feel and trying to do...
Oh And Eating is another thing. I was eating snacks before bed and I am trying to stop that too. I read about protiens or even eating and how it affects our systems and can be a problem with the sleep patterns.
I was not eating a lot but something.. and I am trying to not eat after 6 or 7pm which is also hard when your up late and get another round of hungry...
So another good reason to get to bed earlier....
I do not get much done anyway..if I STAY Up late so now that I am feeling quite a bit better I am anxious to not Loose more time and Adjust these things. WHen I was much sicker it all blended together adn I felt horrible all the time and it just did not matter much to me anyway and I was so sick I also just was not able to make these adjustments. Those how have been so very ill know what I mean I am sure..
I though think that the goals are good for bed earlier and not eating past a certain time.
Bed tilt and also eating breakfast which I am NOT hungry in the AM> but been making a shake at night and keeping it in the fridge so I get something in me in the AM instead of nothing..
I hope these all help in collaboration. ?
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karenl
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I need to eat later and small snacks before going to bed again otherwise I lose too much energy while sleeping.
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sparkle7
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I don't think that there is one set time for everyone to wake up or go to bed. I think it's an individual thing. There are plenty of variations in nature that are contrary to waking up with the sun, etc.
I have a pet tree frog - she's nocturnal... Doesn't seem to bother her. The parakeets I've had wake up with the sun. The cat seems to sleep day & night... LOL
This was an interesting read -
Healthy, Wealthy, and DEAD?: 5 Reasons Why Getting Up Early Might be Harmful
I don't eat alot at night. I generally eat about 2 meals a day. I have some toast & coffee for breakfast & something for dinner. I may have some yogurt with fruit or a treat at night. I try to eat light things after 9pm like fruit or some cereal.
---
I think the main thing to to get rid of the pathogens that are making us ill - that's what is causing the problem. Then, we can stay up late or have a "regular" schedule & it won't matter either way.
I did get really bad for a while & I was up until 7:30am & sleeping until 3pm. It can get way out of whack & feel too weird. Then, you have to try to make adjustments.
springshowers
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Sparkle.. Well at least you still are able to get up after about 8 hours.
I am having trouble with that too and need at least 12 hours..
I realize this thing is about the disease too but I wonder how much of it for me now is from lingering toxins or the bugs or if its the toxins left over as they say from the killing?
I wonder though what makes it SO MUCH worse for some of us when we sleep .. Like a ton worse...
Maybe I can manage this disease where I am at if I can figure out how to get good sleep and figure out how to sleep without it getting so bad during those sleep hours..
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springshowers
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Here is a good Sleep article which describes what happens to us during each stage of sleep and also how it looks and how long it takes for the stages through out the night..
It does say that if you feel your not getting enough REM to get more hours in the Morning and it will help you.
It also says how the body temp and blood flow and immune system and hormones change during different stages.
I really bet that these changes (some or all) and our infection or how our immune system has been working over time (not well or disregulated).. may be why sleep can be an issue for some.
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springshowers
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Read this
We Need Sleep to Survive
Let Me Sleep!
If you still feel tired when you wake in the morning, experts say you need more sleep!
One thing that no one is debating is that sleep is an absolute necessity, but there even have been studies done to prove it. According to the National Institutes of Health (NIH), while rats normally live for two to three years, those deprived of all sleep only live about three weeks, and those deprived of REM sleep (the stage of sleep when we dream and during which it's thought brain regions used in learning are stimulated) survive only about five weeks on average.
At the same time, the rats developed abnormally low body temperatures and sores on their tails and paws. Researchers believe the sores indicate a sluggish immune system and suggest just how detrimental sleep deprivation can be to the immune system of humans.
springshowers
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posted
From same place
Sleep and Sickness
Ever notice how when you're sick you're almost always tired? As it turns out, while fighting off infections our immune systems produce powerful chemicals called cytokines that make us sleepy. It's thought that this is the body's way of helping us to fall asleep, during which the body is able to conserve energy and other resources that the immune system needs to fight the infection.
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springshowers
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Sparkle
Another reason to get to bed earlier:
Get to bed as early as possible. Our systems, particularly the adrenals, do a majority of their recharging or recovering during the hours of 11 p.m. and 1 a.m. In addition, your gallbladder dumps toxins during this same period. If you are awake, the toxins back up into the liver which then secondarily back up into your entire system and cause further disruption of your health. Prior to the widespread use of electricity, people would go to bed shortly after sundown, as most animals do, and which nature intended for humans as well.
We know many of them but good to Review and remind ourselves.
I disagree that it does not matter when we sleep and such and it is different with everyone etc. Using the animals is not a good example but they do have their own Natural patterns yes. That is because that is their way based on their species.
WE as humans have our own natural pattern and I think we should pay attention to it and why it is and what happens during those patterns and what happens when we switch it or change it around. For example the above statements about what happens at what time of night and we do have a natural clock we should pay attention to this.
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I can't help, as I have the opposite experience with sleep. Except if I am herxing, my symptoms always feel better after any amount of sleep, and more sleep equals more improvement.
I usually wake up every night after about 5 hours, and then go back to bed. If I take a warm epsom salt bath before bed, I seem to sleep through the night better, but if I get the water too hot, then I have trouble falling asleep for an hour or two.
I assume that the hormonal and other processes you are talking about are working well in my case, leading me to feel better after sleep, but could have the opposite effect if they weren't working.
I have mostly fatigue and joint/muscle pain, and as far as I know right now, I only have Lyme.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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sparkle7
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It's a complex issue for sure! In theory, I can agree that going to sleep early is best. There are alot of things that modern life encompasses that make for changes in all of this, though.
I did some studying about this last night... It seems that light & genetics have alot to do with circadian rhythm. Many of us sit in front of a computer, tv, with electric lights on or work shifts at night, fly on airplanes, etc.
All of these things can change the rhythms. Some people live in places where they don't get much light all winter & lots of light in the summer.
I think that humans have to be flexible & adaptable. Otherwise, we probably won't survive. For our particular problem - it's the pathogens that are making us ill.
Having a better sleep schedule is probably a good thing but we are in multiple unhealthy circumstances. These pathogens effect multiple body systems & each of us is unique in how we handle the burden on our bodies. It's very complex. These pathogens may even be effecting our DNA...
One way of coping with the pain at night & morning is to take some kind of time release pain medication. I found that this helped me more than trying to take a sleep medication or melatonin, herbs for sleep, etc. It was the pain that was effecting my sleep - not sleeplessness increasing my pain.
Hormones are also affected & other body functions. I believe that the human body is very adaptable. People have found ways to survive in many climates & under many kinds of life styles & conditions.
To think that everyone needs exactly the same kind of sleep pattern is kind of limited - no offense to anyone. I think there have been studies of people in various conditions & we basically revert to some sort of 24 hour cycle. Morning people vs. night people has to do with metabolism, as well.
Like I said - it's a very deep subject. There are alot of variables - metabolism, brain function, dream states, exposure to sunlight or artificial light, genetics, pathogens, toxins, blockages, social conformity, employment, stress... on & on. It's an interesting discussion.
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I'm going to talk to my husband about trying the incline therapy.
Spring, thanks for posting the Mercola link. The idea about the adrenal recharge and toxic dumping between 11 and 1 is interesting to me b/c all of my night disturbances used to happen at that time (I used to sleep walk/have night terrors, which are now controlled with Cymbalta).
I've done it all, new bed, new house, teas, music, normal sleep study, regularly in bed by 9 asleep by 9:30, now I sleep through the night b/c of meds. Still awful pain (worst of the day) when I wake up. If I had my druthers, I'd take 2-3 hours to get up for the day, everyday. I no longer consider myself to have sleep problems, it's just feeling crappy when I wake up, the meds have not fixed that, so I really see this as a problem that underlies the sleep.
Seeing LLMD next week. Will discuss with him.
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massman
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Some of the timing of when certain organs do what is based on a "Meridian Clock."
The one I have been exposed to + sometimes use shows the liver repairing + rebuilding itself from 1 AM to 3 AM.
If it is asked to do its normal work at that time it may have difficulty.
An example: If you eat protein later in the day - say after 3 or 4 PM then the liver deals with that and cannot effectively rebuild at its rebuilding time.
springshowers
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MassMan Yes I read that about eating protein and the liver and timing of it. Interesting and had not known that before.
The tilt thing is helping for sure ITs noT gone but 3 nights now of improvement.
I also went to bed a bit earlier and have done the few items I am talking about.
I had once tried compounded hydrocortisone from my homeopathic doctor and take it in the AM and at Lunch. I am going to ask about that again.
I have been taking some adrenal supports supplements my homeopathic doctor gave me as well and its a complex proprietary blend. I only started it last week. So maybe thats helping too.
I usually do not do more than one thing at a time so I know whats helping but well..
The Tilt Is really nice and i find it more comfortble too and maybe because there is not as much pressure on my body and I feel less pain too.. All helpful.
Get this.. !! I got up at 7am today! ANd I felt like getting up? I went to bed at 11 or 12.
Thats amazing and VERY unusual for me..
I even did some work in my back yard and just felt like doing stuff.? WHAT? ?HUH? CRAZY!!
Been paying bills and more now.. I feel like I just gained a week!! In a few hours.
WOW This is great and I hope that I CAN KEEP THIS . WEll we all know there are ups and downs and I will not get too excited..
: )
But
: )
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massman
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Good to hear the progress ! Keep it ........UP !
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sparkle7
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Let us know how you are doing in a month or so from now with this, springshowers.
In the past, I've actually worn a wristwatch alarm that went off at 10 or 11pm to remind me to go to bed... LOL
I go through phases of trying to sleep at "normal" times & just not paying too much attention to it. It probably helps to have a regular schedule & some reason to get up & awake. It does feel like you have way more time when you get up early.
I don't know if it matters if you get up early or later when it comes to that "hit by a truck" feeling. With me, it usually passes in a hour or so - no matter when I get up.
Sometimes, I wake up at 7am & feel somewhat OK - but often - I went to sleep at 4am... So, it doesn't help much. I usually have to go back to sleep around 11am. Yes, it's very wacky & not good. This happened to me today & I feel like $-*#.
They say people who are night owls usually end up creating a "sleep debt" that has to be paid eventually by getting a big chunk of sleep.
I think it may be best to try to work down the late night hours & go to sleep earlier in 1/2 hour or hour increments. This is what my old bio-feedback doctor told me.
I used to get by on 6-7 hours of sleep & now I really need 8-10 hours. I've been feeling more fatigued since I started the artemesia a couple of months ago. These things can change...
At one point, when I was well - I actually used to go to the gym (sometimes) before commuting to work in the big city... Then, I walked about 15 - 20 city blocks to my job - worked all day & came home, cooked dinner or maybe went out on occasion. Went to bed & did it again the next day.
Kind of hard to relate to that now...
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sparkle7
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Another thought...
How about a country like Spain (or other countries that have a siesta in the afternoon)?
Another reason why the Spanish stop for siesta is not so much out of need but out of want - the Spanish like stopping for a while at lunch time. It allows them to stay up later in the evening without fading (you'll rarely hear a Spaniard saying 'I think I'll have an early night tonight'). Subsequently, if it has been a really late night, an afternoon sleep can be very welcome.
The Spanish nightlife is an all-night affair - visitors to Spain are surprised to see the streets just starting to fill up at midnight and are even more surprised to see people in their 60s and 70s still out at 3am. They wouldn't be able to do this without a siesta.
However, today many people are unable to take a siesta and their lives haven't collapsed around them. The gradual disappearance of the siesta has not changed the late-night lifestyle, which means the Spanish sleep an average of one hour less per day than other European countries.
---
It's culturally acceptable to have this kind of lifestyle there. I have read about a large study that shows people who take a siesta have a lower incidence of heart disease.
I'm not trying to disagree with what some feel is a healthy lifestyle. I just want to explore the idea that we have to go to bed at a specific time or have a set number of hours sleeping.
I think some of our concepts of this sleep issue relate to our culture. Most Americans work very hard & don't have a cultural concept that enjoyment of life is very important - like they have in Europe.
Standard procedure in many European countries is to have 5 weeks vacation & 2 hour lunches... Many places close early & are not open on weekends. Some places close the whole month of August. I don't think I have seen any 24 hour Walmarts while in Europe.
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springshowers
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I think you all should try this .. . at least.
I added also this mattress topper and pillows all around and its like a bit of a cocoon and soft and the best sleep I have had in a Long time..
Its not been that long so .. yeah I should report back in a month..
But I do not dred going to bed anymore...
So far.
Not perfect but .. I notice an improvement for sure and thats saying a lot in this Lyme World.
And its free and its easy and you can always try it and then put it back to where it was or play around with it.
The tilt is what the key seems to be though.
I am thankful for you posting the idea .. !!!
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springshowers
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Good Night : )
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I have tried many things to combat what you describe.
What I have done lately is have a snack with Activated Charcoal when this happens. I go right back to sleep nice and relaxed shortly after. I think it's toxins recirculating in my case.
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TerryK
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Spring - have you had a sleep study? A sleep doctor may well be able to help you figure out the cause of your problem.
It sounds like it could be sleep apnea. It is not unusual in Lyme, CFS or Fibromyalgia. With sleep apnea, you feel worse after sleeping because you are going without oxygen during sleep and your body is struggling for air, constantly waking one up in order to breath. A person can wake up 100's of times in a few hours and not be aware of it.
Untreated sleep apnea can cauase sore and stiff muscles, blood sugar abnormalities, weight gain/inability to lose weight, fluid gain, depression, fatigue, hormonal imbalances, death and the list goes on.
Even if it's not sleep apnea, it may be another diagnosable/treatable sleep disorder.
back2game wrote: I have not dreamed in many, many years.
This could be due to lack of REM sleep which can also be caused by sleep apnea. Slowly my dreams declined until I seemed to never have dreams anymore. They returned with appropriate treatment for my sleep apnea.
Terry
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TerryK
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Before I knew I had sleep apnea I started sleeping with my head up on the arm of the couch and that helped a lot. Don't know if it held my throat open so I could breath or why it helped. Tilting the head of the bed helps with reflux too.
Inflammation is always worse for me when I wake up which can cause more pain. I typically take something to keep inflammation down right before I go to sleep.
springshowers
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Yeah Sleep apnea has been ruled out and there was nothing wrong when I went through tests.
So. .though.. I have had dreams coming back a lot now too and I think that is with good treatment.
It may be what is part of some peoples issues.. but for me I am still not sure....
I have tried the toxin absorbing supplements or meds etc because I thought it was toxins circulating too but it did not help..
Still not sure. and I think it may be more of a metabolic problem. And things such as cortisol and adrenal and thyroid stuff..
I think it might be working backwards and .. well thats what I Was told after tests and that is how I feel too..
Not sure.. though..
I do know its not the simpler easier answers as I have tried to figure this out for years and have done a lot of the obvious stuff and gotten the tests like sleep out of the way...
I just dont know though and not sure the doctors know for sure either..
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springshowers
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Just adding this link to another thread called
METALLlC BLUE
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Whatever is going on appears to be related to two primary things: Immune system abnormality, and it affect on the activation of the central nervous system.
Drugs which bind to GABAa recepters inhibit the nervous system by increasing the frequency of opening of the chloride ion channel on the GABAa receptors.
In simple terms taking GABA as a supplement, combining it with a drug which has a high affinity for GABAa receptors may significantly improve sleep quality, and thus in the process reduce many of the symptoms associated with the hyperactive central nervous system. This "irritability/exciteability" is likely caused by the immune systems response to the infectious disease which provokes it.
Kill the infection, cause a herxheimer, symptoms worsen in the sleep department. Whether caused by toxins, antigens or other factors associated with the spirochettes death, the immune system is the one factor that holds it all together.
Inflammation in the brain, such as a form of vasculitis, could fundamentally make it more difficult for GABA to bind to the receptors.
Simplfied one more time: Two choices which seem to affect most patients. Find a drug which increases GABA's ability to bind to GABAa receptors in the brain, or decrease the inflammatory response which is imparing GABA from binding to the GABAa receptor )i.e. kill the infectious disease or use immuno modulators or suppressants.
That's my theory. It would explain why sleep is impaired by inflammation, but would also explain why the inflamation increases when the individual attempts to sleep when GABAa receptors are receiving weak activation. Nerves use sodium channels as well as neurotransmitters like GABA to produce the voltage.
Simplified: Chemically, inflammation increases repetitive firing of nerves and interferes with the transfer of neurotransmitters at the same time. This "electric" abnormality is likely responsible for the seizures seen in Lyme, as well as the spectrum of symptoms, such as the sweating, heart racing, and other hyperactive alertness. Ironically, this hyperactive alertness only applies to certain parts of the nervous system and body, while other parts are hypoactive, leading to the reduced cortisol levels, HGH, thyroid and other changes which decrease activity. The nervous system is likely both excited and depressed depending on how inflammed (acute or chronic), leading to increases and decreases in the particular chemical event.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
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The nervous system controls immune system function. Abundant studies indicate that proper sleep strengthens and balances it's function.
The suppression via the GABAa recepters being bound must activate or inhibit other parts of the brain that control that activity.
Perhaps it is similar to what we call "chemical imbalance" in people with psychiatric conditions such as ADD, mood disorder and other similar issues. Either activation or suppression of neurotransmitters in certain areas of the brain via medications result in a balancing, producing a particular behavior or outcome which sought.
All varietys of mental, or physiological processes which stimulate or impair central nervous system activity in specific or systemic parts would connect my hypothesis.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Dawn in VA
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posted
I agree with Metallic's posts regarding the GABA interference stuff, as we know Lyme and company cause HPA dysfunction.
Magnesium can help/calm down that hyper/excitability state, so you may want to consider taking some before bed. Just a thought.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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tick battler
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I haven't read this entire thread but I recall reading a thread here about a doc in South Africa who uses pulsing of ABX to treat lyme, rickettsia, etc. Can't recall her name. I think the thread may have been about Dr. J in DC who also does pulsing of abx, and this woman's name came up.
Massman - I think I recall you might have mentioned this doc, but I'm not sure. Do you recall this?
Anyway, when I googled her name I found in one of her papers I remember reading that she often saw as a Rickettsia symptom that people felt worse after lying horizontal for a period of time. I took note of this b/c my husband always feels worse first thing in the morning when he wakes up.
tickbattler
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springshowers
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Thanks Metallic for the detailed description and explanation.
I did not know those details of the mechanisms and responses etc during sleep but it makes full sense.
I have felt it is related to my poor immune system functioning and I just did not know all that your wrote to help describe all of the pieces of that puzzle..
Do you agree with Magnesium as something that might help balance the system ? OR what other ideas do you have that one can do at home that might help.
Maybe its the inflammation in the brain that the Tilt Therapy helps.
I am still quite happy with the amount of improvement I am getting with it. But I still do have the issue but just not as severe as before.
I will take each step of improvement towards a goal but ultimately we have to learn how to get our systems working "normally"
Right?
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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SS -- so glad that you are seeing results from the incline bed therapy
I saw you mentioned vivid dreams -- just be aware that is a sign that your body is ridding toxins and the dreams CAN turn into nightmares.
If that is the case, then lower the bed back down a bit until the dreams subside and then you can raise it again.
I just ordered the Rife Frequency Book by N. Sylver. I noticed she writes about the incline bed therapy as a complimentary treatment.
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METALLlC BLUE
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quote:Originally posted by springshowers: Thanks Metallic for the detailed description and explanation.
I did not know those details of the mechanisms and responses etc during sleep but it makes full sense.
I have felt it is related to my poor immune system functioning and I just did not know all that your wrote to help describe all of the pieces of that puzzle..
Do you agree with Magnesium as something that might help balance the system ? OR what other ideas do you have that one can do at home that might help.
Maybe its the inflammation in the brain that the Tilt Therapy helps.
I am still quite happy with the amount of improvement I am getting with it. But I still do have the issue but just not as severe as before.
I will take each step of improvement towards a goal but ultimately we have to learn how to get our systems working "normally"
Right?
Honestly, I don't think Magnesium will solve the problem - (not that anyone said it would), but it might help. I think reducing inflammation is key. It is the hardest aspect of treating this disease because it's intricately tied to the infection.
Drugs like Lyrica or Gabapentin are intricately tied to my hypothesis but thru different mechanisms. The part that interests me most is the production of gamma-aminobutyric acid (GABA), and a drug or supplements ability to make it bind to the GABAa receptor. The Benzo, Lyrica, Gabapentin and other drugs may be significantly useful for some people.
It's not a coincidence that most Lyme patients respond well to one of the Benzo drugs, and that those drugs significantly (extremely) help GABA bind to the GABAa receptors, which are significantly responsible for balanced sleep.
Simplified: A neurotransmitter GABA which is responsible for sleep must effectively bind to it's appropriate receptor in the brain to engage restful sleep. I propose that vasculitis and other inflammatory conditions within the brain or other parts of the body are preventing GABA from finding it's way home. Another problem may be that GABA is being produced in very low amounts and this poses a similar problem. So, drugs like Lyrica, Gabapentin, and Benzo drugs (or drugs that increase production of GABA or aid GABA in binding heavily to it's appropriate brain receptor should induce higher levels of sleep. If the inflammation is too overwhelming, no amount of drugs may be able to overcome the key hurdle, getting that GABAa receptor filled with GABA. We can force the body to make the neurotransmitter, just like we can do so with dopamine via Welbutrin, or Seratonin via SSRI drugs.
Force the body to make the neurotransmitter GABA with a drug or supplement (perhaps consuming it orally or via injection-IV) might even possibly produce similar effects. The brain may not even need to produce it in the appropriate quantity if the neurotransmitter can be administered. Then force it to bind in the Brain where it's supposed to.
For those suffering extensive headaches, many of the drugs that are responsible either directly, or indirectly may see a reduction in pain. Actually, all forms of nerve related pain may reduce as a result of the voltage change in the speed of the nerves firing
I did further research. I am not the first to consider this idea, though I'm still thrilled that I formed the hypothesis without knowing it existed.
Research the pharmacology of these drugs. See if you can find other drugs that are inhibitory to the Central Nervous System, but that act like these drugs via increasing GABA. It is very likely that the same drugs that accomplish that goal will also be reducing the speed of nerves firing (inhibitory) which should also decrease symptoms associated with hyperactive firing of nerves in the body.
Another mechansism seems to be Glutamate, which stimulates the nervous system. If you can introduce Glutamic acid decarboxylase (GAD)into the body, it will convert Glutamate to GABA, and we know GABA is inhibiting central nervous system activity, while Glutamate does the opposite.
So it seems amino acids of various types that produce GABA or interact somewhere along the creation chain of it's formulation are all viable things to consider.
Treating sleep should be similar then to treating a chemical imbalance with Norepinephrin, Seratonin, Dopamine, etc.
Further investigation unfortunately shows that there is a bandwagon to do exactly what I propose, but that Bandwagon isn't highly scientific. It seems the alternative market has grabbed onto this idea.
If you want to actually research the subject appropriately search for "Pharmacology + GABA"
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
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posted
Barbituates, Propfol and other drugs that act on GABA all seem to be either addictive or even dangerous.
Another issue I noticed is the close tie between Glutamate and GABA. You'll note that there are patients who experience dissasociation or other symptoms of amnesia and a spectrum of memory loss. This may be directly a result of impaired Glutamate binding in the brain. Like impaired GABA, we can't naturally sedate ourselves, which is what our brains normally should do everynight when we sleep. The opposite is that the same impaired function of other neurotransmitters or amino acids can impair consciousness, causing symptoms we commonly see as brain fog.
I found a book specific to what I'm discussing. Is it suprising the book costs almost $200 dollars?
Book Title:
Glutamate and GABA Receptors and Transporters: Structure, Function and Pharmacology (Pharmaceutical Science Series) by Jan Egebjerg, Arne Schousboe, and Povl Krogsgaard-Larsen (Hardcover - Oct. 4, 2001)
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Oh, and to answer the big question originally posted. My hypothesis is that rather than the natural inibitory affect seen in sleep from GABA, we're seeing an excitory effect. This connects well with the prior post regarding the Brain Waves "flipping" during the sleep cycle of CFS patients. When asleep (or a poor attempt anyway), we patients force ourselves to attempt to create some sedative affect, usually via meditation or other methods we've learned over the years. This artificial or chemically weak sedation actually turns against us. We experience more symptoms, more suffering, because the neurotransmitters -- which are probably in very low quantity, bind to their receptors, leaving excitory neurotransmitters active.
What you get is a partial weak sedation and a hyperactive affect on an inflammed nervous system. The nerves fire rapidly, yet abnormally. This may explain why may patients wake from sleep with a feeling of fear or panic. Sweating, greater fatigue, pain, and a groggy feeling.
So then, I propose the nervous system takes precedent over the immune system in producing more symptoms initially upon waking, while the chronic ongoing pattern that I just explained, indeed, does explain why inflammation increases while overall immune system function and control become even more abnormal. It then is a circular feedback process. Infection brings inflammation. Inflammation impairs creation or binding of neurotransmitters that are both inhibitory (sedative) or excitory (Alertness). The excitory transmitters and inhibitory transmitters are already out of balance. Binding of one may increase the others affect, but the inflammation interferes, causing abnormal binding and imbalanced nervous system function. Stress hormones that are stimulated by the chronic excitory neurotransmitters would then impair immune function. The abnormal immune balance-function would lead to hyperproduction of ongoing inflammation, which is also instigated by the infection, leading the process to repeat itself.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I didnt read all posts But I would say because body dose all repair when we hit rem sleep ie calsium & magnesium going in and out of cells maybe your low on one of these and not completing repares??
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thanks for the info Metallic! It would be interesting to see if there is a correlation between the chemistry you mention & actual brainwave patterns.
I go through phases of getting somewhat good sleep or having insomnia. Being more active & trying to do some exercise does seem to help me with getting sleep. If one is inactive all day - it's kind of hard to sleep.
I do find meditation with binaural beats is very helpful. I felt when I had cognitive impairment & sleep disorders - working with various binaural beats does help. I guess it's sort of like exercise for the brain.
I'm not out of the woods but doing something that is like biofeedback therapy & meditation does help with brain function. Biofeedback therapy is a way to train your brain to achieve various brainwave patterns.
You can do it yourself with CDs with binaural beats. It's called brainwave entrainment. The CDs save alot of money rather than going to a biofeedback therapist. It's similar but not exactly the same.
I'll have to look into GABA more when I get a chance.
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springshowers
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Wow Metallic that is very interesting indeed. How long have you been looking into this indepth? And how is your sleep and how do you feel when its the morning?
I do think many books and doctors talk about sleep issues as a reason for CFS and FMS
But I do not think so and think that there are reasons for the sleep issues such as infections.
I asked my pain doc recently about inflammation and he said with lyme and lyme flares and herxes that inflammation is the reason behind the symptoms and pain etc
But he said (and I do not know how I feel about this one) that FMS and CFS are not related to Inflammation.
The only thing I can relate to is that when my SED rate goes down to normal I am feeling better and not as sick from what I feel are Lyme and co infections.
But I have left over pain and some fatigue to deal with and those are (I feel) not from Lyme. But..?? I was thinking What is it from? some sort of infection? Maybe its the mystery bug or maybe a central nervous disorder ? Post Lyme? I dont know
I know many feel FMS and CFS are really just lyme?
I used to agree but not so much anymore? Not sure.
But anyway.. Back to Sleep. Somehow sleep is disrupted and changed just like lots of our system. The chick or egg theory comes into play and when and where to jump in to try to fix things??
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sparkle7
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posted
My original diagnosis was fibro. I also had CFS many years ago. I tried fish oil & anti-inflammatory herbs but it didn't seem to help. There's contradiction among scientists & doctors about whether fibro pain is inflammatory or not.
It's kind of odd because the pain moves around (for me). It's not always in the same place. It also can be worse if there's low pressure weather.
There are some in the fibro world that think the pain is due to disfunction with substance P in the brain. I'd have to dig up some research on that to discuss it further. In a nutshell, people with fibro have a brain dysfunction where they feel more pain than "normal" people do.
Maybe there's an interaction between this brain dysfunction & sleep? Where it comes from, I don't know... Maybe it's a pathogen, toxin, or retrovirus?
Some people with fibro may also have Lyme (& vise versa) but I think they are different & unique. I think a person can have one without the other.
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I haven't read all posts in detail. But one of the issues dr. K. talks about is EMR exposure. It could also be that!
I feel HORRIBLE if I sleep in EMR contaminated places. I can start the night relaxed, but the tension builds up in the night.
My daughter is also sensitive and will sleep at least 1 hour less if not 2 hours less, or wake up during the night crying. Next day, she will be cranky, moody, tired ...
Once the EMR exposure gets smaller, it can take some time to adjust.
When I sleep in such places, I can't reach deep sleep, I will wake up more tired than I should and can't stay long in the bed. I feel like running out of that bed but I feel SOO tired at the same time that I feel I need more sleep. But not that kind of sleep!
EMR exposure from computer or telephones will also give bad influence in my night sleep, if I use computer before bedtime for more than 30 minutes or so. The effect is clear: colder hands and feet, and difficulty to fall asleep, excitment (it feels like I took extra doses of coffee)...
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METALLlC BLUE
Frequent Contributor (1K+ posts)
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quote:Originally posted by springshowers: Wow Metallic that is very interesting indeed. How long have you been looking into this indepth? And how is your sleep and how do you feel when its the morning?
If I use no medication, I wake like all of you. Suffering. If I use a Benzo drug, combined with activities which reduce stress and nerve irritability, I sleep much better. However the drug does not last.
quote: I do think many books and doctors talk about sleep issues as a reason for CFS and FMS
I think they're wrong. I think whatever is triggering the overall syndrome is provoking an inflammatory response which is subclinical, and thus causing the same pattern I described above.
quote: But I do not think so and think that there are reasons for the sleep issues such as infections.
I asked my pain doc recently about inflammation and he said with lyme and lyme flares and herxes that inflammation is the reason behind the symptoms and pain etc
But he said (and I do not know how I feel about this one) that FMS and CFS are not related to Inflammation.
I disagree with him. Most patients with FMS and CFS experience most of the symptoms of a systemic infection like Lyme. It is my opinion that they suffer from a systemic illness, which is triggering an undercurrent of inflammation.
Check to see the studies done on CFS and FMS using Steroids. Note many patients improve. Now, do they improve because a deficiet of Cortisol is present (like most Lyme patients), or because of the anti-inflammatory effects?
It is best to start with what might be the simplest answer, as that is often the right one. In this case, a systemic inflammatory process of subclinical nature is easily suppressed with low dose varieties of steroids.
Even in Lyme, low doses often don't cripple patients but do suddenly increase their energy, decrease pain, improve sleep and a host of other factors. Higher doses lead to a complete decimation and an infection which spirals uncontrollably.
quote: The only thing I can relate to is that when my SED rate goes down to normal I am feeling better and not as sick from what I feel are Lyme and co infections.
Knock knock, who is there? Common sense, right? You and I both know that the immune systems impotent response to Lyme Disease results in a half-hearted persistent low grade attack. This in essence - inflammation. Force it to go up patients symptoms systemically worse, especially in their "vulnerable" area. Mine is my bowel, yours may be joints, or nerve degeneration (MS). It's all the same in my opinion.
quote: But I have left over pain and some fatigue to deal with and those are (I feel) not from Lyme. But..?? I was thinking What is it from? some sort of infection? Maybe its the mystery bug or maybe a central nervous disorder ? Post Lyme? I dont know
Ongoing persistent infection is where I'd put my money. There is a lack of understanding of all the factors that contribute to the symptoms humans have when bitten by multiple (or singular= ticks, which are co-infected. The assault on the body -- including dysregulation of the immune system would cause allocation of resources to shift. Infections that normally aren't a burden, suddenly become one. AIDS patients experience this. Any autoimmune or immune dysregulation (or impairment) would behave this way.
quote: I know many feel FMS and CFS are really just lyme?
I used to agree but not so much anymore? Not sure.
But anyway.. Back to Sleep. Somehow sleep is disrupted and changed just like lots of our system. The chick or egg theory comes into play and when and where to jump in to try to fix things?? [/qb]
No, I don�t think FMS or CFS are default Lyme. However, it should be noted in the list of possibilities rather than simply pushing it to the side.
A lot of things are implicated and causitive of those conditions. Lyme Disease (Or borreliosis) is only one species where some strains cause it. Viral infections like Mononucleosis, or Epstein Bar cause persistent syndrome in a select number of people. As do viral infections like HPV6. We know of these as part of what we Lyme patients face, but there are thousands, upon thousands of infectious diseases, as well as environmental toxins, and even sensitivities which go undiagnosed.
Our spectrum of interest is really narrowing down "How" inflammation would be impairing neurotransmitters from forming, binding, and their relationship on the nerves which are transmitting the signals. That's where I'd put my attention if I couldn't reconcile an effective solution to immediately killing the persistent infection (whicheve it is, whether Lyme or another which mimics it's inflammatory properties within the brain.
I've spent about 10 years "thinking" about how this unusual sleep pattern ocurrs, but it didn't really click (a-ha) until you look at the biochemical implications. We know from Brain SPECT scans, and other scans-MRI, PET and post-mortem investigation, that the immune system is specifically involved in the process. The way nerves respond to inflammation is much different than that of muscle, skin, and such. This difference comes down to "rapid communication". Energy transfer in the form of electrical or chemical. "We know that inflammation presents with a leaking of plasma and leukocytes from the blood into the injured tissues. A cascade of biochemical events propagates and matures the inflammatory response, involving the local vascular system, the immune system, and various cells within the injured tissue. Prolonged inflammation, known as chronic inflammation, leads to a progressive shift in the type of cells which are present at the site of inflammation and is characterized by simultaneous destruction and healing of the tissue from the inflammatory process." - Wiki
If physiological barriers of inflammation inhibit the signals that would normally occur, it's a bit like projecting light thru a window (normal), a yellow painted window, and finally a black painted window. Various barriers that inhibit nerve function would create the misfiring within the nerves -- including within the brain. This in baby terms, explains some forms of mental illness or neurological disorders - like seizures.
To the degree that the inflammation "block" proper function via mechanical means, including excess fluids, crowded cellular activity, the worse off the function of a particular tissue will behave.
Again, probably nothing new -- but I think toxins, and anothe else which creates a physical barrier, will lead to dysregulation.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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