This is topic waking up feels like coming out of a coma - anyone else? in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/95170

Posted by kellephant (Member # 24885) on :
 
does anyone else feel like they are coming out of a coma everytime they wake up??

i am sleeping 12-14 hours a day again now, and it is SO hard to get out of bed. i WANT to, but i am physically unable to move! it is so depressing and helpless feeling to not be able to get out of bed no matter how hard i try for several hours. i really feel like i'm on my death bed when i wake up. i can't even yell for help because i'm so weak.

i just get scared that maybe it's not from lyme and that i have something else, which is why i'd like to know if anyone here has this problem!

i am so discouraged [Frown] i've always loved life, but i am being forced to sleep years of mine away... i feel like i'm never going to get better... encouragement is appreciated! and please don't yell at me for being down, i normally make the best of everything, but i'm having a really hard time right now.
 
Posted by TF (Member # 14183) on :
 
Well, I had a friend who had a large goiter. She had areas in the thyroid that were underactive and other areas that were overactive.

She had symptoms of both underactive and overactive thyroid (called hypothyroid and hyperthyroid). One of her hypothyroid symptoms was what she called "sleeping too deeply." She told me she went "far, far away" when she slept. It frightened her. She had great difficulty waking up from sleep, like you describe because she went "too far away."

She was given a booklet by the endocrinologist explaining throid problems. It mentioned about the possibility of a person with a bad case of hypothyroid going to sleep and not waking up--just going into a coma. When I read that, it made me think of what she was trying to describe.

So, I think it might be worth your while to have your thyroid hormones checked. It is very, very common for lyme disease to affect thyroid function. Once you get rid of the lyme, the thyroid problems disappear. But, in the mean time, you may need to give your thyroid some help.

Here is what Burrascano says on page 6:

"Pituitary and other endocrine abnormalities are far more common than generally realized. Evaluate fully, including growth hormone levels. Quite often, a full battery of provocative tests is in order to fully define the problem. When testing the thyroid, measure free T3 and free T4 levels and TSH, and nuclear scanning and testing for autoantibodies may be necessary.

Activation of the inflammatory cascade has been implicated in blockade of cellular hormone receptors. One example of this is insulin resistance; clinical hypothyroidism can result from receptor blockade and thus hypothyroidism can exist despite normal serum hormone levels. These may partly account for the dyslipidemia and weight gain that is noted in 80% of chronic Lyme patients. In addition to measuring free T3 and T4 levels, check basal A.M. body temperatures. If hypothyroidism is found, you may need to treat with both T3 and T4
preparations until blood levels of both are normalized. To ensure sustained levels, when T3 is prescribed, have it compounded in a time-release form."

So, if you are suffering with hypothyroid, it may not be easy for the doctor to detect. See what Dr. B says: "clinical hypothyroidism can result from receptor blockade and thus hypothyroidism can exist despite normal serum hormone levels." Your blood levels can be normal but you STILL have hypothyroid. I would think that some doctors don't even know such a thing is possible.

Look up the symptoms of hypothyroid and see if you have a lot of them. If so, let your lyme doctor know.

Here is a list of symptoms and some further explanation I found on the web:

Symptoms of Hypothyroidism

*Fatigue
*Weakness
*Weight gain or increased difficulty losing weight
*Coarse, dry hair
*Dry, rough pale skin
*Hair loss
*Cold intolerance (you can't tolerate cold temperatures like those around you)
*Muscle cramps and frequent muscle aches
*Constipation
*Depression
*Irritability
*Memory loss
*Abnormal menstrual cycles
*Decreased libido

Each individual patient may have any number of these symptoms, and they will vary with the severity of the thyroid hormone deficiency and the length of time the body has been deprived of the proper amount of hormone.

You may have one of these symptoms as your main complaint, while another will not have that problem at all and will be suffering from an entirely different symptom. Most people will have a combination of these symptoms. Occasionally, some patients with hypothyroidism have no symptoms at all, or they are just so subtle that they go unnoticed.

If you have these symptoms, you need to discuss them with your doctor. Additionally, you may need to seek the skills of an endocrinologist. If you have already been diagnosed and treated for hypothyroidism and continue to have any or all of these symptoms, you need to discuss it with your physician.

http://www.endocrineweb.com/hypo1.html
 
Posted by kellephant (Member # 24885) on :
 
thanks for your reply! i DO have hypothyroidism (and every single one of those symptoms), but the doctors say it's not bad enough for me to be feeling as awful as i claim... i was sleeping up to 17 hours a day before i was on any thyroid medicine. i wish they would just treat me for my symptoms! maybe my LLMD would be willing to up my dosage... i don't see him until august though :/
 
Posted by kellephant (Member # 24885) on :
 
and that's REALLY scary that you actually can go into a coma from hypothyroidism... because i do feel like that could happen to me! and i completely relate to the "going too far away" comment... makes me mad that a doctor hasn't taken me more seriously.
 
Posted by sandyk (Member # 17959) on :
 
Just FYI - my husband does not have any thyroid problem, and that is EXACTLY how he describes waking up.. like coming out of a deep coma.. it really freaks him out and continues to happen almost like he doesn't even know where he is. I attributed it to Lyme in general.
 
Posted by TF (Member # 14183) on :
 
Well, if you have been treated for hypothyroidism for a while now and you still have all the symptoms of it, it is time to get a new endocrinologist, in my opinion.

See what Burrascano is saying. Lyme causes inflammation which can block the hormone receptors in your cells. So, the thyroid hormone is there, but you can not receive it into your cells. You need a really good doctor who knows what to do about this.

When I need to go to a specialist like this, I start asking many people if they know one. I look on the Internet to see if there is an article about one being rated Top Doc in a local magazine, things like that. I don't just go to the local guy--whoever is closest. I try to find someone who has a great reputation. I have found that this can make all the difference in the world.

Have you gotten the book "The Lyme Disease Solution" by Dr. S? His website is lymedoctor.com It tells you there how to get the book.

He evidently talks a lot about reducing the inflammation caused by lyme--through diet, for one. I wonder if doing what he says would help you?
 
Posted by kellephant (Member # 24885) on :
 
TF, i have moved a lot, and i've had several endocrinologist... the last one i saw told me "you are fine now... i can't help you with your problems. don't come back for another year." ... i don't FEEL fine though!

my LLMD told me i should be on a different type of thryoid medicine, but he has to run tests on me first, and i don't see him for a few months.

is it possible for an LLMD to send you a lab slip, and to have the test preformed in your area since he is several hours away. also, will an LLMD let you come in before your appointment simply for testing?

and i'm sure it's a good book, but we don't even have enough money to last for food until my husbands next paycheck, so a $30 book is out of the question.

right now i'm on a low-carb gluten free diet... i also eat a carton of plain yogurt a day. i have been on this type of diet for 11 years.
 
Posted by kellephant (Member # 24885) on :
 
sandyk,

i am sorry your husband experiences the same thing, but i am relieved to know i'm not alone at least!
 
Posted by Hoosiers51 (Member # 15759) on :
 
This sounds like it definitely could be Narcolepsy.

I am actually about to get a a study done to see if I have it.

Narcolepsy is actually a problem with sleep quality and a problem with the timing of the various stages of sleep. There are signs during the day, but sometimes the only sign is feeling tired during the day.

The reason it sounds like narcolepsy is because some people with narcolepsy feel paralyzed when they first wake up, or while they are falling asleep. It's like your brain is still in deep sleep, and can't get out.

I could be wrong of course, but if I were you I would definitely see a sleep specialist. Hopefully they will recommend the Multiple Sleep Latency Test (MSLT) to check for Narcolepsy. And narcolepsy can be atypical too, meaning not presenting like most cases.
 
Posted by Hoosiers51 (Member # 15759) on :
 
http://helpguide.org/life/narcolepsy_symptom_causes_treatments.htm

Sleep paralysis is what it sounds like you have. It is the third bullet point in that link.

A lot of people with Narcolepsy do NOT have ALL the symptoms, just some of them.
 
Posted by Hoosiers51 (Member # 15759) on :
 
ps--if you aren't actually having sleep paralysis, you just feel weak....

....still, I'd get a sleep study.

But if it makes you feel any better, I am in the same boat as you....I have what seems like an endless need for sleep at times. The antibiotics can make it worse, but even without them, I sometimes sleep tons. It is scary. I have posted about this recently, in a thread called, "Worried about how much I sleep" something like that.
 
Posted by kellephant (Member # 24885) on :
 
i have had sleep paralysis before, on about 7 occassions i'd guess, but this is different. it's more like feeling too weak to move. i can move a little when i try really hard, but it completely wears me out and i fall right back to sleep.

i would like to get a sleep study... i just can't afford anything extra right now [Frown] maybe one day...

oh, and last night i actually dreamed i was having a sleep study done, haha.

and i will look for your thread [Smile]
 
Posted by Hoosiers51 (Member # 15759) on :
 
Do you have insurance? Because insurance usually covers it.

I can let you know what mine finds. Maybe PM me or something in 2 weeks if you wanna know how it turned out.
 
Posted by lizajane (Member # 16931) on :
 
I am experiencing the same issues. So do not feel alone. I have been being tx for Lyme since fall 2009. I was diagnosed as Hypothyroid in 2001 but have still alot of the hypo symptoms.

I have asked my reg Dr. several times to test my thyroid in more ways than just TSH but she says I dont need to my " #'s" are in the "normal" range!!!!!!
I don't give a crap about #'s I feel horrible...........

Now just in the last few months I have become extremely fatigued. Cannot get up no matter how much I want to. I used to go to yoga class 2x a week but I try to get up and I can't [Frown]
I was attending ballroom dance classes for the last 4 yrs and now can't drag myself to class. I used to be Very Active! No more I have no energy
Gained 40lbs since 2001. I am going to see a new doctor next week and hopefully this one will listen to me and run the test that I ask for.
Hang in there and don't give up on yourself keep trying to find a doctor who will actually listen to you and get tested.
 
Posted by Rumigirl (Member # 15091) on :
 
kellephant,

Yes, your LLMD can order the tests before you go to him, you can go to your local lab, and he will have the test results in a few days.

Also, it sounds like if you could ask him briefly on the phone to help (either a paid short phone consult or just brief one for no charge), that would help a lot, as August is a long time from now.

And, everyone, hypothyroid has to be a clinical diagnosis, going by symptoms, along with lab results, not only going by lab results!! If your dr doesn't do that, find another one--a Lyme Literate one, if possible. Ask your local Support Group or on Seeking a Dr on Lymenet.
 
Posted by TF (Member # 14183) on :
 
kellephant,

Yes, please call your lyme doc and ask that they mail you a slip for your thyroid tests. Tell them you are really suffering with all the hypothyroid symptoms, have no life because of this, etc.

As Rumigirl said, you can go to any lab and have them done. Then, perhaps after he gets the results, he will call in a different prescription for you.

Your life could really turn around then!
 
Posted by kellephant (Member # 24885) on :
 
@ HOOSIERS,

i have insurance through my husband, but it's practically useless. it's called "beech street" and it's nearly impossible to find anyone who accepts it. i would definitely like to know how your test turns out!


@ LIZAJANE,

you sound JUST like me! i used to run 40 miles a week... i am an extremely active person at heart, but i had to quit my job and i can't do anything physical anymore. it kills me!

also, i've gained 50lbs. i used to starve myself and over exercise just to keep from gaining. i stopped though and ballooned. i went to another doctor and he told me "you have to realize that you're 22 now and not 18 anymore. you don't have an 18 year old's metabolism" i said "yeah, but i don't have a 22 year olds metabolism either... not even close!" ... then he said it was just genetics and that i was going to have to accept it, but at the same time reccomended i lose weight!

believe me, NOBODY knows more about losing weight than me... but it is impossible for me now! i know every trick in the book, and they used to work... but they just don't anymore.

i completely agree that doctors should treat based on symptoms and not on numbers! all my doctors just got me into the LOW end of the normal range and they think that's fine. well maybe MY body needs to be on the HIGHER range!!!

also, i have a low pituitary test after test. it was low enough to make 3 doctors think i had a pituitary tumor. after my MRI came back normal, the issue was dismissed. i don't understand why nobody will treat my pituitary! maybe my pituitary needs to be working right to help my thyroid!!!

goodluck at your next doctor appointment. i feel for you!


@ RUMIGIRL,

that is a good idea. i will try to reach him this week. i can never talk to him personally... just nurses, and they are really bad about returning my calls.

if i have the test done at a local lab, do i have to pay upfront? that is what i am worried about. there's so many tests i need that i can't afford.

i was thinking about trying to get a test through the last doctor i saw who is on my insurance because i think it would be cheaper, and then sending the results to my LLMD, but i think it would just be a generic thyroid test and i feel like i need something more complex.


@ TF,

okay, i will try exactly that! i am going to call right now and leave a message. they are closed for the day, but i always get a machine anyway. i did not know exactly how to word it when i call... but you told me exactly how to put it... thanks! i definitely have no life right now and i'm desperate!
 
Posted by METALLlC BLUE (Member # 6628) on :
 
That's exactly what I experience. I also was diagnosed with Babesia, Rocky Mountain Spotted Fever, and BLO (Bartonella Like Organism). Those were the big ones. We treated the RMSF like crazy with cycline drugs, so it's probably gone. Babesia has been treated extensively for a year now with a lot of Mepron, Artemesia, and now about 8 months of Malarone, which seems to have done the trick. I'm staying on the Malarone for another year.

The Bartonella was hammered with Factive, Levaquin, Zithromax, and a little Bactrim and Rifampin. I treated that for about 6-8 months. No idea if it's dead.

Still, symptoms persist strongly, and I feel like a corpse rising when I try to wake up and get up. When I sleep past 6 a.m. or when the sun comes up, it gets even worse. No idea why.
 
Posted by lymeboy (Member # 24769) on :
 
I had this a few months back. I felt that same exact way...I would sleep for 12-16 hours, and thenwhen I woke I felt like I was coming out of a coma. I even used that exact description. When My Dr. found the Lyme, he gave me Doxy for 6 weeks, and this symptom went away. I felt a bit better. However, the neuro symtoms became much more pronounced, and have not yet subsided. I am currently in my 6th and last week of IV treatment, with little or no improvement. If anything the symptoms have gotten much worse.
But the severe fatigue went away after the cycle of DOXY. Not sure what happenned, but it helped my physical symtoms quite a bit.
 
Posted by Bugg (Member # 8095) on :
 
I felt like this when I was at the worst point of my illness; My husband would have to shake me to get me awake enough to eat; It was sooooo disturbing....

You absolutely will get past this......I'm tremendously better.....
 
Posted by NanaB (Member # 26227) on :
 
It is very important to have the free T3 & Free T4 done in addition to the TSH (Thyroid stimulating hormone) levels.

My PCP kept doing the TSH only and it would come out normal. I read an article and he added the Free T4. It still came out normal. The last article I read said many have those normal but the T3 isn't normal. He finally did the free t3 and that's how he found I had hypothyroidism.
 
Posted by jalama (Member # 14600) on :
 
When I wake up I feel so incredibly awful that I cannot get out of be for the next three hours, not even to pee or get a glass of water. Waking up is just absolute misery. I'm hoping this will improve with treatment...

Good luck!
 
Posted by TxLymie (Member # 20847) on :
 
This is exactly how I have described my waking up experience for years..like "coming out of a coma". It's so bad my husband has had to get up with my 3 girls and get them off to school for the last few years. It makes me very sad that I haven't been able to be a good mom to them in this way.

But on the bright side I've been on a new abx for 3 months now and this symptom has finally gotten better!! I'm still very tired but I can actually get out of bed now without feeling like I will die. I hope and pray it stays this way...and hope and pray that it will resove for you too!
 
Posted by Need Lots of Help (Member # 18603) on :
 
Well, I also feel horrible when I wake up. My first thought is to just cry, but that wastes too much energy.

It doesn't matter when I get up, but I feel aweful. I feel best at night right before I go to sleep. Even though I am tired, I feel at my best.

That is about crazy to me. I have had my thyroid checked several ways, total, T3, T4 and antiboities, but supposedly everything is ok.
 
Posted by lemonlime (Member # 25975) on :
 
One doc put me on Armour we started at 1 grain and ended at 3 grains ( this doc also gave me cortizone 10 days later I blew up ) I stopped the meds and looked like a normal human again ( he was treating for low adrenals)

anyway the next doc tested my th3 and 4 and said 3 grains of armour is too much. She put me on 1/4 grain of compounded thyroid. Took a blood test she said this is the dose. Still of course not feeling well and loosing tons of hair. I did some research and found that I could add some lugols iodine- I did and my scalp inflamation got much better.

My new doc says blood tests aren't always accurate and now I am taking my temp as soon as my eyes open and counting my pulse beats for one minute. I'm to do this for 3 weeks- then it is a clinical diagnosis.

I have read on some of the docs websites that the tempurature taking is the way to go.

So maybe your doc will allow you to do the temperature thing? If he is unwilling it's because he only knows what he knows and won't step out of that box.

Yes your doc can fax over a blood test request to a lab near you. Labs will generally allow you to make payments over time just ask them. Tell them you have been ill and money is really tight. They will let you actually they can't say no- they have to accept some payment even if it's five dollars a month. Trust me on this. I've done it many many times.

I hope this helps Sorry you are feeling so crappy.
Our bodies slow down when we are sick to preserve itself. And antibiotics have the same effect on the body - it's all about the body preserving itself.

Even sometimes a doc will work with you for time payments-

If my doc doesn't listen to me or pay me the respect I deserve I go to another doctor. That's the way it goes. sometimes you find a better doctor somewhere else.
 
Posted by kellephant (Member # 24885) on :
 
my LLMD refused to help me long distance. he won't let me take labs here. i want to find a different doctor, but it is exhausting to keep looking.

anyway, thank you everyone for your advice. i've been too out of it to reply to each of you individually, but i appreciate all your encouragement and advice.
 


Powered by UBB.classic™ 6.7.3