To say I am frustrated is an understatement. I have been sleep deprived since December. I was pulled of Rocephin due to Systemic Yeast, plus blood test showed low MSH and TGF Beta 1 or human Transforming Growth Factor.
Yes, I am on a complete yeast free, all sugars free, gluten free diet. Fun...
I have serious sleep issues. First they tried upping my Clonazapam, then Baclofen (bad), then Trazadone (didn't work) and know finally Ambien. Last night I slept a full six hours, great! Now tonight I can't sleep again. WTH?
They tell me I can't get better until I start sleeping! Like somehow I can will myself to sleep!
I am so confused. Moody, going back to being dyslexic, comprehension when reading is out the freaking window!
I want to scream!
Posted by annxyzz (Member # 20404) on :
Maybe you should try trazadone again at higher dose. It usually works!!!
Also , I have not tried melatonin, but it works for some.
I know this is miserable. I am going to pray you find a solution soon as it affects everything .
This may sound nuts, but one thing that will usually put most adults to sleep is children's dimetapp liquid ( allergies ). Cheap too .
Praying for you !
Posted by nonna05 (Member # 33557) on :
I don't know the answer.
I know how horrible this feels.
Ambien .I get exactly 1 hour thirty four minutes,, then I'm up.... try to get to sleep and not start "rat race" thinking
,I take a third more and may get a couple hours...if not
Then when I hear the air planes start I know it's 6:30 A.M. and I may fall asleep somewhere between then and 9.
Or on sick/herx days I could sleep from 5-6 A.M. to 7 or later at night.
I must be getting better ,cause there were days when I would sleep for 1-2 days, with 1 or 2 potty breaks and a few sips of water or Ensure to get meds down.
This is no picnic we're on..and getting proper help and/or un-informed interference is just a fight. That we usually aren't well enough to fight/fund/find/follow/....etc..
Oh ! The brain issues just the biggest bummer.
Hang in/on/over/through...great scripture
Nonna
Posted by annxyzz (Member # 20404) on :
Another thing that usually helps a lot with worst sleep issues is old drug elavil or flexeril- even at miniscule doses elavil will give good sleep.
Posted by mlg (Member # 35383) on :
Hi Talk with your doctor. Rotating sleep medicines. I take ambien with ativan. Then on the days I don't take those I take klonopin with seraquel but space them out about 1 hour and it is low dose seraquel.
Posted by Keebler (Member # 12673) on :
- See detail here about how benzos & and some other things block glutathione and can make things worse in the long run:
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posted by Judie (Member # 38323) on :
Are you taking generic Ambien?
Generic Ambien was THE WORST for me (everyone I know who tried the generic said it didn't work the same either). Only name-brand worked for me.
I know with ambien you need to go try to go to sleep right after you take it (I don't know if you're doing that).
If you stay up and "wait" til your sleepy (like watching TV or reading), you can actually push yourself to stay awake and it will keep you up.
There's this druggy trend to take a bunch of Ambien and purposely keep yourself up so you'll hallucinate.
Ambien is only suppose to give you 5-6 hours of sleep. There's a new kind out where you can take it if you wake up in the middle of the night. I can't remember what it's called.
Posted by shannon12 (Member # 36149) on :
I also take seroquel 50mg, may not be the best thing, but it help me sleep well for the most part the past 7 years, I wouldn't have made it without it.
Posted by terv (Member # 29410) on :
I also take seroquel. I am up to 100 mg ER with 25 mg to get me to sleep if that is an issue. I had to increase my dose when I started IV treatment. 25 mg used to do the trick.
My LLMD made some comment that it is one of the few drugs that gets you into some kind of sleep. Wish I asked him what the "some kind of sleep" was.
Posted by Lymetoo (Member # 743) on :
Yeast can cause terrible insomnia. Are you taking Diflucan or Nystatin?
PS .. Try taking 2/3 of the Ambien at bedtime, then the other portion when you wake up in the night.
Posted by EWT1638 (Member # 11315) on :
I take generic Ambein. 2.5mg because I've been taking Clonazapam for YEARS, I also take antidepressants and anti-anxiety meds. So my LLMD is hesitant to increase past 5mg.
I am very sensitive to all meds, so it has also had to be the lowest efficacy dose. Yes, I have been on Difulcan for 5 weeks now. HOW long does it take?!
I was on Seroquel before, trying to remember why I got pulled off. Flexeril is another in my FOGGY memory...not sure why I was taken off that either.
Thanks for the prayers annxyzz. I will try to read some of these links, although most of the time I find them difficult to digest. Blessings.
Posted by nefferdun (Member # 20157) on :
It is one of the infections causing the insomnia. Bartonella and protomyxzoa are the worst offenders. You need to take the right meds to target the right infection.
Sure, we all have borellia but you don't just keep targeting borellia. If you develop other symptoms, like vicious insomnia, it is probably another infection.
What other symptoms do you have? If it is bart, you might feel depersonalization (detached from self , others and life like a zombie), pain in feet or shins, irritation/outbursts or rage and unusual marks on your skin like pea size brown spots, crusty moles, swelling that does not leave a dent when pressed etc.
If it is protomyxzoa rheumatic, some of the symptoms you might experience are profound fatigue, brain fog, dizziness, hot flashes, headaches, nasal congestion, dry cough, loss of voice, tooth and jaw pain, muscle or joint pain, nerve pain, twitching, bladder irritation (UTI or frequent urination) etc. PR can seem a lot like babesia except for the insomnia., twitching and bladder irritation.
Ivermectin does not aggravate yeast as much as antibiotics and it really hits PR hard. I could not sleep at all when PR became really active but I was nearly normal two months after starting ivermectin - and I mean in all respects. It brought me back. It is imperitive that you stick to a low fat vegan(ish) diet if you have PR - no more than 15 grams of fat a day. If you do not follow this you will never get weil. Period.
Bactrim DS got rid of bart for me. Levaquin hit it the hardest but I could not tolerate it. As horrible as bart it, you can get rid of it - unlike PR.
Posted by sickofsick (Member # 29258) on :
This may sound ridiculous, and I don't suffer from insomnia, so I may not get it. But... I know of someone that used a listening program from Advanced Brain Technologies. It was very helpful.
Posted by Messa (Member # 38065) on :
I take ambien. I have a friend who's on tomazepam with good results.
Posted by Lymetoo (Member # 743) on :
Candida is such a difficult condition to diagnose because it can affect each sufferer in a different way, on a different part of their body, in a way that may even be unique to that person.
For this reason, Candida is often misdiagnosed and the symptom is treated instead of the underlying cause, rather like taking a lozenge for a throat infection! Practically, patients often have to diagnose themselves because the symptoms of Candida are so confusing.
The consensus is that many more people are suffering from Candida than those few who are diagnosed correctly. You may find yourself suffering from any or all of the following symptoms if you have Candida:
PARTIAL LIST OF SYMPTOMS:
The Way You Feel
Inability to focus, Poor memory, Brain fog, Irritability, Anger, Dizziness, Depression, Crying spells, Panic attacks, Low libido, Persistent extreme fatigue, Hyperactivity, Cravings for sweets and alcohol, Insomnia, Poor coordination.
Posted by Catgirl (Member # 31149) on :
Hormones, adrenals, and enzymes all play an important role here (most, if not all lyme patients are deficient). I agree with Lymetoo regarding yeast too.
Posted by EWT1638 (Member # 11315) on :
Yeah, I already KNOW I have systemic yeast...so it is very probable that may be the cause of the insomnia.
But I am being treated with Difulcan (diet is correct too)...so at what point do we beat yeast? I had sleep disturbances prior to systemic, but not nearly as bad.
Posted by EWT1638 (Member # 11315) on :
Hi Lymetutu....that list explains all the ear infection like pain I have been having recently. But it goes away, so it can't really be an infection can it?
If I am taking the Difulcan, shouldn't I be getting better? I also take Theralac now, but I had not be regular about it prior. Know better now!
Posted by jlsprow (Member # 40450) on :
Hi
My daughter takes compounded low dose naltrexone and now sleeps like a baby.
It is important to obtain it from a reputable compounding pharmacy.
But I am being treated with Difulcan (diet is correct too)...so at what point do we beat yeast?
-
Good question! I'm still looking for the answer! I am 10 days into consuming homemade fermented vegetables. Hoping for the cure!!
I'm eating zero bad stuff and taking 100 billion CFU probiotic... and Sporanox, along with Nystatin.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by EWT1638: Hi Lymetutu....that list explains all the ear infection like pain I have been having recently. But it goes away, so it can't really be an infection can it?
If I am taking the Difulcan, shouldn't I be getting better? I also take Theralac now, but I had not be regular about it prior. Know better now!
- Yes, I've had a similar ear problem. It was like my eustachian tubes were blocked. It's better now that my diet is better, etc. That was really last winter I was having so much trouble. Never was an infection.
If I were you, I'd take two of those Theralac per day. Space them out, making sure to take one at bedtime.
These have 50 billion CFU's per capsule. Dairy free.
Hi EW I know how very frustrated you must feel. Similarly, I spent nine months never getting past the twilight stage of sleep.It made me feel like a zombie.
My GP told me that sleep is one of the, if not the most important thing your body needs for healing. Part of the issue I experienced on Lunesta or Ambien was staying asleep. A shift to the extended release AmbienCR solved that issue ("CR" = controlled release). Now I get a good seven hours of uninterrupted sleep.It made all of the difference in the world.
I know you expressed concern over the dosage. The mg dosage for AmbienCR is 6.25mg (for females) - but remember that dosage is doled out over the course of the night, not all at once. Males get a 12.5mg but I would imagine the lower-dosed AmbienCR could be prescribed to them as well.
This is, of course, my experience and what worked for me but perhaps this may be help for you? Something to discuss with your doctor anyway.
Good luck - I hope that you are able to find something that provides you with relief!
Posted by EWT1638 (Member # 11315) on :
Thanks all. Last night was night number 3, at 2.5mg.
Last night I got edgy/shaky a little irritable before bed, kind of a pre-panic attack stage, but was able to out last it. It still took a couple of hours, but I did fall asleep. When I wake up though, it is with a jolt!
About 4 hours later I am really tired and actually fall asleep for about 1.5 hrs (used to do this back in the ole' days, lol). Mood is kind of "iffy", very variable.
If it doesn't get worse, I can do this. I just need to excuse myself more if I start getting irritated easily.
Funny though, once you get 'a little sleep', my spouse thinks it is time for you to stop being ill. "All you need is a little sleep and exercise." I get that it is tough being the healthy one, but you'd think after all these years...he'd get it.
Waiting on test results so we can move forward.
Posted by Kudzuslipper (Member # 31915) on :
Oh EW... I so hear you. I have had insomnia, watch every hour click by insomnia since I was 13. Ambien truly changed my life. And I no longer feel guilty for taking it. Also, treating with abx helped a great deal. Some things that have helped the ambien work better...
Take your vitamin d3 with dinner (and make sure there is a little fat with it.).
Take a probiotic at bed time (tutu told me that and it does make you sleepy.)
Taking magnesium supps 2 hours before bed can help too.
And like mentioned above. Take the ambien right before you get I to bed. If you take it too early you do fight it.
And... Psychologically, A shrink once told me, You can't die from not sleeping (although many years later they proved it does shorten your life...lol). But she did encourage me not to stress about not sleeping. To try and enjoy just resting and that did help.
Posted by WPinVA (Member # 33581) on :
I may have missed this, but have you addressed adrenal fatigue? My sleep didn't improve until I addressed it, and then it got a lot better.
I still need Flexeril at night and still have some bad nights here and there, but things are MUCH improved.
Also, this is hardly a cure but I did read an article on insomnia that said: when you can't fall asleep, rather than going into panic mode about how you won't be able to function the next day (what I used to do), tell yourself instead that "I have had bad nights before and I have managed."
That has really helped to minimize the anxiety that could sometimes keep the downward cycle of insomnia going.
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Nonna