Severe Insomnia (And My Belated Intro)

[ks42]

So I've been a member for a little while, but haven't actually posted anything, so I guess this is also my (late) intro post!

I was diagnosed with POTS last year in the middle of grad school, and wound up bedridden pretty fast with a super high HR and scary high BP on standing (although BP would get super low when lying down). I was found to be somewhat hypovolemic, but they also found my epinephrine (adrenaline) to be high pretty much all the time, even while resting supine, while my norepinephrine (noradrenaline) was always normal (even on standing). I was told that was highly unusual, as most HyperPOTS patients have elevated norepinephrine, not epinephrine, so I wasn't diagnosed with hyperPOTS exactly.. but was told I have the symptoms of HyperPOTS.

Anyway, one of the biggest issues I had when I was first diagnosed was that I was only sleeping an hour a night, which didn't resolve until I was put on Klonopin - at that point, I was able to sleep 8 hours a night (and did so for 9 months with no problems).

All of a sudden now, for the past eight weeks, I've been sleeping only about 3 hours a night. No matter when I go to sleep, I will wake up 3 hours later and won't be able to go back to sleep (but I'll feel groggy and exhausted!). I can't figure out what might have caused it, as I haven't changed my lifestyle or routine at all. Oddly, I've also been having to keep my house at 65 degrees at night, and when I wake up, I'm usually way too hot and have to lower the temp down to 60, which is highly unusual for me (although I've taken my temp and don't have a fever).

We tried quadrupling my Klonopin, tried having me take more Klonopin when I woke up in the night, tried Gabapentin (it's supposed to induce slow wave sleep), and also tried various doses and forms of Melatonin and B6. None of it has worked, and I can't take Benadryl or antihistamines. I have blackout shades & curtains, don't watch TV before bed, tried meditation & hypnosis for sleep, etc. Nothing seems to be working.

Both my POTS doc and my regular doc seem to have run out of suggestions as well, and we're not sure about a sleep study at this time, as I don't sleep at all in strange environments (and barely sleep in my own bed right now anyway).

Does anyone else have similar problems? What have you found that helps?

[corina]

Hi ks42, sorry I can't help you, just thought to say hi and welcome to our forum!

[Katybug]

Hi ks42,

Something called Alpha Delta Syndrome has been found in POTS patients. It doesn't really help in the way of treatment but at least it explains our sleep disturbances. I'll link the paper later...I'm in the doc's office right now.

[p8d]

I have had serious insomnia since my dysautonomia started. I feel your pain. I tried every sleep med. I have found doing the exercises (bike especially) helps me fall asleep on my own for 3 or 4 hours, then I take a temazepam and get 3 or 4 more. I had a sleep study which only found mild apnea. I look forward to the article. Sorry I couldn't be of more help, I am trying hypnosis, visualization and all the other things you mention. My Dr recommended a CBT sleep specialist when I can tolerate weekly visits to get off the drugs. I am housebound at the moment. Thinking of you.

[artluvr09]

Welcome!! I know this may seem like an odd solution but maybe try eating a banana before bed or after you wake up from not being able to sleep. It seems like when I can't sleep and am anxious or just tossing and turning I grab a banana and I am able to fall asleep. Its weird. I looked it up and there is a dr oz article about it too. here it is:

http://www.doctoroz.com/article/foods-help-you-snooze

Hope you feel better and are able to sleep soon!

[ks42]

Thanks everyone!

p8d - I'm sorry you're in the same boat. I hope you find relief from your sleep issues as well. CBT sleep therapy is something I might look into too, when I feel like I can get out of the house on a regular basis.

artluvr09 - it's funny, before I got POTS, I used to eat bananas whenever I couldn't sleep, and it did seem to work. Thanks for reminding me about that, I'll have to add it to my regimen.

Katybug - thanks for mentioning alpha delta sleep syndrome. I vaguely remembered reading a study on a sleep syndrome found in POTS (might have even found it on the forum in a search at one point), but just couldn't remember the name. Once you gave me the name I was able to look it up again, thank you! I emailed it to my primary care doc, who was really happy to have the info.

[Katybug]

ks42,

Here is another interesting bit about sleep disturbances in POTS patients. In this attached thread, there is a video posted on pg 2 of the posts. It is long but I found it extremely informative and might be something else to send to your doctor.

http://forums.dinet.org/index.php?/topic/26652-strange-new-phenomenon-happened-today/page-2?hl=video#entry248257

[looneymom]

My son had problems getting to sleep and then staying asleep through the night. He would wake up almost every hour on the hour and be drenched in sweat. His doctor started him on Extended release clonidine. He falls asleep and stays asleep through the night. No more sweating issues either.

[ks42]

looneymom - thanks for the info. Clonidine is something I had wondered about, actually, especially with my elevated adrenaline levels, though I hadn't thought about it potentially improving sleep issues. I'm thinking that might be worth mentioning to my POTS doc. That's one med we actually haven't tried yet

Does he take it just once a day at bedtime to help sleep, or is it something he has to take twice a day to keep a continuous level in his system?

[POTLUCK]

KS42-

I developed sleep problems with my POTS symptoms, and they got worse in the spring of 2014 before developing other problems. I took everything under the sun and had a sleep study also which did not help with anything that was clear. I tried, at least once Flexaril, Clonidine, Seroquel, Restoril, Trazadone, Remeron Klonopin Gabapentin and a handful of OTK meds. The Gabapentin and the Klonopin were the two I ended up on for a year, and they both work through the same Gaba receptor so may have a synergistic effect. I would warn you to be careful of the Klonopin it is highly addictive, I have cut it down from the original prescribed dose which I believe was way to much, and intend to continue tapering it. The Remeron ( at low dose only-7.5 to 15) was the strongest of them all for me and if I had it to do over I would have been on it and not Klonopin. I am taking the Remron when I need it but not all the time now. I would rather be off the Klonopin due to the addiction but on the Remeron. The others I am not on. The Clonidine sent me for a loop with Hr's and blood pressures all over the board and I will never take it again-it did not make me sleepy by any means but I am sure everyone is different. The medicine that strangely brought me my sleep back was high dose Propranolol that I had been trying to cut down on but am not back on-this is not really a sedative medicine by my understanding. It drastically moves my HR back to a normal range.

With your story above I would wonder if the Klonopin really made that drastic a difference in your sleep that long or if something else may have made the sleep worse back then and then went back towards normal and is now causing a problem again. Studies show tolerance specifically for sleep develops much more rapidly than tolerance for other things like anxiety. Some medicines like Imipramine can also help sleep though that is one I did not try. Also I have heard Magnesium can help but never tried that either. Melatonin did not help me.

Be careful your docs know which ones you are taking when as their can be drug interactions. Hope any of that helps.

[POTLUCK]

I can not figure out the edit function for above but I meant that with Klonopin tolerance develops at a different rate for sleep and anxiety. The tolerance for sleep-meaning it becomes less effective yet you need to take it or have trouble sleeping is much faster than the tolerance for its beneficial effects as an anxiolytic.

[TWynnB]

Oh, I feel for you! I at least get more than 3 hours. Well, most nights.

I'm a little bit different story because I have spasticity as well, which may be a large part of my sleep issues. My GP did prescribe Trazadone for me, which I can barely walk when I take it, but doesn't turn off my brain (I kind of wonder what my catecholamine levels are...). It does work fairly well for me. I am grateful because I now sleep until 4:30 or 5, when I was waking up before 4. I also had a hard time falling asleep, and would wake up for a couple of hours in the middle of the night. Most nights I'm now sleeping 5-7 hours straight. I take my meds at 9, and make sure I head to bed instead of delaying, since I know I can't sleep in.

It's hard to recuperate when you're exhausted!

[looneymom]

Ks 42

My son takes the extended release clonidine an hour before betime only. He takes .3mg. He started with .1 but had to go up to .3 to fall asleep and stay asleep. He cannot take it during the day time yet. However, that may be another option for him once he is able to stand up and start walking again. He has had testing for the brain neurotransmitters and his norephrinphrine levels are high. Our doctor thinks that hyperpots could be a problem but my son is not able to stand up for the correct testing to be done.

[statesof]

Hey ks42 I too have had longstanding issues with insomnia, for me I have the type where it is difficult to fall asleep so it can take me anywhere from 30 minitues to 3 hours. I am on amatriptyline for my migraines but it is supposed to help with some peoples' sleep cycles. I didn't feel like it helped mine at all, but have now found that if I miss my nightly dose of amatriptyline I will not be able to fall asleep that night.

[SarahA33]

Potluck, do you still use propranolol to help you sleep? It helps me when my body starts firing off too much adrenaline and its one of the only things combined with ativan that will allow for a 1/2-3 hour period. It depends on the night. If I am having terrible adrenaline surges that particular night ill wake up with night sweats, tremors, purplish and blotchy, and my heart rate is very rapid (much Lower now thanks to the ivabradine)

I noticed in one of your posts you mentioned you could not figure out the edit function. It's a tiny button that says EDIT in between report and hide on the bottom of the post screen. When you are finished, click save changes.

[SarahA33]

Hi ks42, welcome to the forum!

I was also diagnosed with a hyperadernergic component and clonidine has been really helpful for me. It depends on the day if my PM dose will help me sleep a little bit, but you mentioned in one your posts that you had thought of trying clonidine.

Here's an article I thought you may be interested in: http://circ.ahajournals.org/content/117/21/2814.full

Again, welcome to dinet! Sorry I'm a little late on the welcome wagon

[artluvr09]

Ks42 I have been wondering if you have tried a banana yet? I am curious to see how it helps other people! I just had anxiety today and had a banana and am now calm. its weird.

[ks42]

Sarah - thanks for the article, the table of treatment options is really helpful.

artluvr09 - I did try the banana. I didn't find it was a huge help, but on nights when I do eat them, I get at least an hour or two more sleep than if I don't. My potassium tends to be on the lowest end of normal, so it's possible I might need the potassium boost.

My primary care doc wound up giving me a trial of trazodone until I can get back to my POTS doc, which I haven't taken yet as the side effects looked pretty scary, but will probably break down and try it soon. This is pretty much what I go through every time I try a new med - I stare at the bottle on my counter for a week, wondering what new or scary adverse reaction I'm going to have this time, before I get up the courage to try it. I realize I should probably stop thinking about it that way, because although I have had some scary reactions to a lot of meds, there have been a couple that have been extremely helpful, so the only way I'll know how it goes is if I try.

[looneymom]

Ks 42

Have you had magnesium levels checked lately? Epsom salt baths are wonderful before bedtime and this is an easy way to get this in.

[ks42]

No, I haven't had magnesium levels checked lately - they always check sodium and potassium, but the last magnesium check was probably months ago. If I remember, the last time it was checked it was either on the lowest possible end of normal, or it was just a teeny bit low. I'll try the epsom salt baths - I can't take super hot baths because of the vasodilation, but I do fine it if it's moderately warm. Thanks!!!

[POTLUCK]

Bananas are very high in Magnesium, and this is supposed to help with sleep, more so in people low in it.

Sarah, sorry it took so long to get back to you. I have stayed on extended release Propranolol. It is not really sedating as it effects me in the daytime also without sedating me, but I guess the effect of leveling out my heart rate helps me sleep better. I do not know. Without it I sleep terrible. I have cut the Klonopin but not stopped it, which is still my goal as I do not like the addictive medication.