Insomniac support group

[[Co...]]

Corsair,

 

If you can afford it, I found that low frequency neurofeedback helped dramatically. It did take about 40 sessions before I went from 1-3 hours a night of broken sleep to now 6.5-8 hours of still broken sleep.  I also use an audiobook app on my phone in which I can dowload any of thousands of books form my local library for free.  I use it to get to sleep if I dont fall asleep right away, and then find my place and use it throughout the night whenever I wake up. This process took about 6 months, so while sleep is still broken ,up 1-4 times a night, I can usually total an average of 7 hours. The longest recent stretch has been 5.25 hours last week.

 

Also, get a Fitbit to monitor your actual sleep. You're probably sleeping more than you think. LAst night for example, I figured I didnt sleep more than 3 hours, but when I looked at the fitbit, it showed that I did, in fact, get over 7 hours.  It works on the movement of your wrist .  I know that I can be still for 15-20 minutes, but any longer than that and I know I'm asleep.  So, it may be better than you think. 

 

This is truly hell. Im 42 months off klonopn and 27 months off Remeron and still having big issues with brain fog, nausea, dizziness, breathing air hunger stuff, joint pains, GI stuff,  itching rashes.  I'ts certainly better than a year ago, and I guess it could possibly just go away tomorrow, but it doesnt look like it.  Those of us who have been in this for years, like me, have concluded that it will take 24-40 months from the date of getting off your last med, to feel relatively well again, assuming you fall into the protracted group.  Good luck.  You'll get through it just as so many others have also done

 

Also,, consider doing cranio-sacral sessions They too are very calming for the nervous system .  I do that 3x/week for the past few months.  I am now going on another round of neurofeedback for another 20-40 more sessions, twice a week.  These were the only things that helped with sleep and the symptoms.  Good luck to us all.

 

Hi it's interesting what you are saying. Could you explain the biofeedback thing? Because english is not my mother tongue and googling it gives me different hits. So maybe you could elaborate on that?

[[Be...]]

Corsair, 

 

It's not biofeedback, although that is good to learn meditative breathing as well.  This is low frequency NEUROFEEDBACK. You first get brain mapping done to determine where the hot spots of anxiety and stimulation are, then the neurofeedback therapist positions gel electrodes over those areas and the brain learns to calms them down.  Some of this is trial and error so you need to get someone who  can modify your plan as you go along, and not do just a cookbook approach.  Basically this will calm down the beta, gamma excitaotry areas so that eventually, in theory,  the anxiety gets better and sleep will happen.  So far, the anxiety is still not good, but sleep, although still broken,  has happened.  Still up 2-4 times a night.  But, the audiobooks seem to allow me to get back to sleep within a few minutes each time I wake up. 

 

Do a search for neurofeedback therapists in your area, but again, its not just old fashioned neuro, but low frequency neurofeedback , and again, there should be a person who  can modify it as your needs change.  After 40 or so sessions, you do another brain mapping. Hopefull, you'll see that those hot spots in your brain have lessened.  Mine did, which is why I'm doing another round of sessions.  Again, check out cranio-sacral therapists in your area as well. Where do you live?

[[Co...]]

Corsair, 

 

It's not biofeedback, although that is good to learn meditative breathing as well.  This is low frequency NEUROFEEDBACK. You first get brain mapping done to determine where the hot spots of anxiety and stimulation are, then the neurofeedback therapist positions gel electrodes over those areas and the brain learns to calms them down.  Some of this is trial and error so you need to get someone who  can modify your plan as you go along, and not do just a cookbook approach.  Basically this will calm down the beta, gamma excitaotry areas so that eventually, in theory,  the anxiety gets better and sleep will happen.  So far, the anxiety is still not good, but sleep, although still broken,  has happened.  Still up 2-4 times a night.  But, the audiobooks seem to allow me to get back to sleep within a few minutes each time I wake up. 

 

Do a search for neurofeedback therapists in your area, but again, its not just old fashioned neuro, but low frequency neurofeedback , and again, there should be a person who  can modify it as your needs change.  After 40 or so sessions, you do another brain mapping. Hopefull, you'll see that those hot spots in your brain have lessened.  Mine did, which is why I'm doing another round of sessions.  Again, check out cranio-sacral therapists in your area as well. Where do you live?

 

I have a cranio sacral therapist, but haven't been there for a while. I'm in Europe, so i will have hard time finding someone like that but i will definetely look into that, as it seems to be something really worth trying. Thank you!

[[cr...]]

Benzotired, which audiobooks help you get back to sleep? Thank you.  Cross

[[Be...]]

Cross,  I do mostly mysteries as the more mundane books dont hold my interest.  There are many  many ladies type books, but they also dont hold my interest.  Ive tried all categories, but non fiction and comedy things dont work for me either.. So, I seem to stay with mysteries from  Mike Palmer, JA jance, David Rosenfelt,  Baldacci,etc.  MAny more, but stay away from the gruesome, loud, screaming ones, as they will get you revved.  I usually download 4-5 at a time so if one gets too gruesome, I just go to another one. I get them from m local library which has a phone app making it easy to download them for free. When I wake, I give it about 10 minutes to fall back to sleep If I dont, I just listen again and usually nod off again. I sometimes do this 3-4 times a night, but usually can only get 1-5 hours at a stretch, at most, so far. Still, using the Fitbit sleep thing, I now seem to total around 7 hours a night, even if its badly broken up. This sucks, but is so much better than the 1-3 hours a night I had been getting before I did neurofeedback.  I'm off everything so I dont know how all of this would work if i was still tapering, but its certainly worth a try, given how awful it can be ebeing up all night for nights on end.  Best of luck to you.

[[cr...]]

Thank you, Benzotired, I appreciate the response. Maybe I can give that a go.  Cross

[[Co...]]

Corsair, 

 

It's not biofeedback, although that is good to learn meditative breathing as well.  This is low frequency NEUROFEEDBACK. You first get brain mapping done to determine where the hot spots of anxiety and stimulation are, then the neurofeedback therapist positions gel electrodes over those areas and the brain learns to calms them down.  Some of this is trial and error so you need to get someone who  can modify your plan as you go along, and not do just a cookbook approach.  Basically this will calm down the beta, gamma excitaotry areas so that eventually, in theory,  the anxiety gets better and sleep will happen.  So far, the anxiety is still not good, but sleep, although still broken,  has happened.  Still up 2-4 times a night.  But, the audiobooks seem to allow me to get back to sleep within a few minutes each time I wake up. 

 

Do a search for neurofeedback therapists in your area, but again, its not just old fashioned neuro, but low frequency neurofeedback , and again, there should be a person who  can modify it as your needs change.  After 40 or so sessions, you do another brain mapping. Hopefull, you'll see that those hot spots in your brain have lessened.  Mine did, which is why I'm doing another round of sessions.  Again, check out cranio-sacral therapists in your area as well. Where do you live?

 

Hi benzo tired! I found a practitioner but she lives very far away and for the moment i can't walk or leave my house, so that's kind of saddening me but i'm not giving up just yet.

Do you think it would be best to be med free anyway before i start the therapy? Because maybe in a year or so when i tapered down my seroquel i might be a bit more mobile (i'm hoping so at least) and would it still be something to consider then?

Because i then might consider renting a hotel room or something to do the therapy. How many times do you do it per week? And is it with the emg every time or is it a computer program (certain sites talked about a computer program)

Thank you!

[[Be...]]

Corsair,

 

I dont know the answer to whether or not it would be best to wait to get off all meds before trying neurofeedback, acupuncture, or cranio-sacral therapy.  They may make your journey easier during the taper, or maybe not. The only way to find out is to try them. 

 

Traveling a great distance for these treatments may not be feasible  for you as I currently do neurofeedback twice a week in blocks of 20 visits (I'm now on visit #50 going for 60.  I may do 20 more  after that if things continue to improve. )  It may be just the way things are now, but for the past two nights I have slept almost 5 hours straight, awakened for an hour, and then fell back to sleep again for another 2+ hours. This is the best it has been in 2.5 years.  So, I'm still averaging around 7 hours a night, although still broken up.    I attribute this gain from about 7 months ago where I was averaging 1-3 hours a night of hell, to where I am now, to the neurofeedback, and the craniosacral therapy.  One or two visits will likely not do anything, so unless you can somehow do many sessions, I guess you'd best wait until you can more easily access the treatments.   

 

I dont have to tell you what a long road this is. There's no rush, but I certainly understand everyone wanting this to be over ASAP.  So, make your best decision how to handle these therapies that work best for you.  I have tried just about everything one can to accelerate this healing , but it cant be done. It's going to take as long as it takes for your nervous system to recover.  These 3 things are the only ones that actually helped me, along with eating very clean all the time, staying as active as possible and stay as connected as you can for socialization, which I find to be very important.  Dont isolate yourself.  Stay away from pretty much all supplements as I, along with countless others, have found that pretty much everything you take, except foods, will rev you up, even if you know you need these things in your body.  Even some foods will rev you up as you continue further along.  Things you were never sensitive before suddenly make you sick.  I did the 23 and me genetic testing, tried countless supplements, only to find that I couldn't tolerate anything.    So, most of the integretive and functional medicine doctors are clueless when it comes to psych med withdrawal.

 

Anyway, good luck and let me know if I can help along the way.  I still have many symptoms of dizziness, brain fog, nausea, anxiety, air hunger breathing issues, joint pains, rashes, many other issues, etc.  BUT, getting some regular sleep  goes a long way to making all the other stuff more tolerable.  i hope you can get some help in this area.  BT.

[[Si...]]

Hi everybody,

 

Well after nearly a year of feeling 99.9% healed and sleeping pretty well, I've gone and screwed it all up. I drank a bunch of alcohol at a Christmas party last Friday night. Had a terrible hang over the next day. That Sunday night I couldn't sleep at all. Slept the next night and then slept terribly again the next night. Last night I passed out at 9:45pm and woke up at 4am. I can't believe I was so stupid to do this.

 

I know some of you here are still struggling with sleep and I'm sorry about that. I'm hoping I can get past this setback quickly. I won't be drinking any more after this. It's just not worth the problems it causes.

[[wa...]]

Don't lose heart, Siggy.  You just over did it.  When I drink it takes me days and days to get back to baseline - which isn't so great to begin with.  Our brains just react weirdly to booze.  So I've surrendered to not drinking indefinitely.  You'll get back to baseline, too -- which sounded pretty good.  WBB

[[Si...]]

Don't lose heart, Siggy.  You just over did it.  When I drink it takes me days and days to get back to baseline - which isn't so great to begin with.  Our brains just react weirdly to booze.  So I've surrendered to not drinking indefinitely.  You'll get back to baseline, too -- which sounded pretty good.  WBB

 

Thanks! I really need the encouragement right now!It's hard to think you are (mostly) over this garbage just to get hit again. 

[[Li...]]

Hi everybody,

 

Well after nearly a year of feeling 99.9% healed and sleeping pretty well, I've gone and screwed it all up. I drank a bunch of alcohol at a Christmas party last Friday night. Had a terrible hang over the next day. That Sunday night I couldn't sleep at all. Slept the next night and then slept terribly again the next night. Last night I passed out at 9:45pm and woke up at 4am. I can't believe I was so stupid to do this.

 

I know some of you here are still struggling with sleep and I'm sorry about that. I'm hoping I can get past this setback quickly. I won't be drinking any more after this. It's just not worth the problems it causes.

 

Siggy, you had a setback but you learned your lesson.  And just to make sure you've really learned your lesson remember that I did pretty much the same thing you did about 9 years ago after being off all meds for a year.  I started drinking again and although it took more than one drinking session, it sent me into a state mental hospital because I couldn't sleep at all.  Some people have stories about spending their summers at summer camp but I will always have my story about spending that one special summer in a state mental hospital. 

[[Si...]]

Yeah not really fun times. I'm wide awake again. It really sucks after having a full year of good sleep.

 

How are you these days?

[[Li...]]

Yeah not really fun times. I'm wide awake again. It really sucks after having a full year of good sleep.

 

How are you these days?

 

I'm sure things will stabilize for you soon as long as you don't drink anymore alcohol.  I would actually avoid drinking anything with caffeine too since it works on the same receptors also.

 

I'm sleeping well but I'm finding myself to be depressed and unmotivated all the time.  I'm on three meds though but that's down from six meds back in July.  I am just starting a liquid titration of Klonopin.  I realize I have to take things a lot slower this time to avoid a hospitalization, so I won't be off everything until 3 years from now.

[[Si...]]

Definetly take your time if you need to. Certainly not a race. Good luck on all the tapering. Glad to hear you are at least sleeping. We know how more terrible everything is magnified by not sleeping. I'll admit that I would have a harder time giving up caffeine than alcohol. But I did give them both up for a long time.

[[Co...]]

Definetly take your time if you need to. Certainly not a race. Good luck on all the tapering. Glad to hear you are at least sleeping. We know how more terrible everything is magnified by not sleeping. I'll admit that I would have a harder time giving up caffeine than alcohol. But I did give them both up for a long time.

 

If you drink caffein daily , taper it. It can cause problems for some to cold turkey that if they drink it daily. (polenta for example)

 

I'm in a bad place; did a too big of a cut from my seroquel. So i'm doing a microtaper in 2017 if i am able to stabilize. Plus also realized that all my sx are also listed as a side effect from my

thyroid hormone, of which they changed the formula last year. So i would like to partially taper that one as well.

[[Si...]]

Hi Corsair, that is a tough spot. Hopefully you can stabilize on the Serequel. Slow taper sounds like a good plan. Sorry you're still having a tough. I know thyroid issues can cause very similar issues like benzo recovery causes. I know two women with Graves' disease that have had a lot of issues. I hope that evens out for you too. My one friend wasn't responding to any treatment at all, so they actually removed her thyroid. It probably is a good idea to taper caffeine. I usually only had one cup of coffee in the morning. Sometimes I drink tea, but I have decaf of those as well. I like decaf green tea for the natural Theanine. I have supplements for Theanine, but I prefer natural sources for those sort of things when I can. Good luck and have a happy holiday!

[[Ju...]]

No postings on this thread for a couple of years, but it is SO relevant to us.  I couldn't sleep with Valium when I got older, and I have had to take an antihistamine since reducing.

 

How long, post-withdrawal, does sleep return to a normal night?

[[In...]]

Siggy,

Hope your Grave's disease friends are doing better...I may end up in a similar boat...hope you are doing much better too.....

 

I HAVE TWO PITUITARY TUMORS, EACH 8mm at their longest side, one on the back of my pituitary and one on the left side....and despite declaring myself  "healed" in what-2017?, massive HEAD PRESSURE came roaring back and BONES STARTED GROWING OUT THE BACK OF MY HEAD and a HEADACHE 24/7 wouldn't end for 3 months straight---

 

After FIVE YEARS of SUFFERING but NEVER visiting a doctor, I finally couldn't take it anymore, went to my old PMD this May (2019), who referred me to a neurologist for "migraines" who did the brain MRI, then when that showed enlarged pituitary, did an MRI just of the pituitary with and without contrast, that showed a left sided microadenoma and a Rathke's cleft cyst.  And they were there at LEAST SINCE 2014 when I was given the valium, because the MRI in 2014 was read as "normal" by a regular radiologist, not a NEURO radiologist!!  (I have now just started with a new PMD)

 

THIS EXPLAINS EVERYTHING!!  I went to Pituitary Network Association, read all over their website, got their book "It's all in your head" and now am still trying to find a good endocrinologist who specializes in pituitary tumors after a failed trip to Mayo Clinic in MN last week.

 

 

...massive weight loss and or gain independent of diet or exercise, constipation, frequency of urination, loss of libido, inability to sleep, crazy appetite swings, depersonalization, mood swings, irritability, sweating, hot flashes, and more, are all attribitutable to "the master gland," the pitutitary....being on benzos did not help the situation, I know for me it made it worse.  But the fact I went into menopause basically overnight at age 46 was probably not due to the valium I took for 8 weeks, but the tumors...the fact I suffered for 5 years after only 8 weeks of very low dose ( 5 mg/day?) valium was now in retrospect more the tumors than the benzo withdrawal......

 

But the fact docs don't believe us on the benzo withdrawal, makes me mad that therefore I was afraid to trust them for anything.  And still there is as much ignorance about pituitary tumors as about benzos.  Especially because my labs are normal.  But this does not mean I am not experiencing symptoms...as we all know!

 

 

 

 

 

[[Si...]]

Hi Independence, sorry to hear about your pituitary problems. Hopefully they can help sort you out.

 

My friends wife that had Graves’ disease had surgery. So she’s doing much better now. She just has to take thyroid hormones. None of the other treatments were working.

 

My sleep is much better now. I only occasionally have insomnia now and it doesn’t last long.

[[jr...]]

It’s be nice if this thread could get started up again. A lot of people here are dealing with insomnia and I’m one of them, unfortunately. I still had a way to go, but was doing much better and then made the mistake of drinking a bit at the start of July.  Set me way back. Everything has since reset to what it was before I drank except sleep. I’m stuck sleeping 1.5 to 2.5 or 3 hours a night now.

[[So...]]

Hey I'll second starting this thread again!

I am so weak and fatigued from months of zero and little sleep and my muscle weakness soooooo bad that I cannot really walk. Just barely to bathroom and kitchen and back. At one point I actually had to be carried and spoon fed.

It sucks!!!!!

A few weeks ago I had some days in a row where I slept 4 hrs straight and then fell back asleep 2 more. It was great

I could walk around more and even drive a car!

Now back 1-3 broken hours or just zero and am back to being couch bound again.

How are you guys able to walk around and function? My legs literally won't work from weakness

[[jr...]]

I don’t really have any issues with bodily strength. When I was in the acute phase of withdrawal, I experienced slight difficulty walking at times because my body felt like it was shaking and swaying back and forth, even though it really wasn’t. That only lasted for the first few weeks though.

And what you’ve described with sleep improving briefly and then getting bad again is pretty common in withdrawal. It’s a really good sign that you’ve already had some nights like that in the first few months. It might take a while, but you’ll be seeing more and more of those.

[[...]]

I’ll third this thread starting again. Sleep and fatigue are my biggest battles. I went through extreme REM rebound and now I’m having vivid dreams with broken sleep. Sometimes 4am cortisol surges. I’d give anything for some real sleep.

[[jr...]]

Me too, DBM. I miss the days when I never even thought about sleeping during the day, when a good night’s sleep was just a given. I have had 2 better nights in the last 4 nights, though. Unfortunately, better right now is only 3.5-4 hours. But it beats what I’ve been getting. I’ll take any improvement. Last night was pretty rough, but I was stupid and ate a bunch of ice cream before bed. I’m on vacation with some family and they wanted to get ice cream, so I tagged along.