Medication To Help With Sleep?

[Sarah4444]

I have been diagnosed with POTS, but don't have a follow up with the autonomic specialist until the end of January. I think I am one of the people with hyperadrenergic POTS and likely MCAD. I have also been diagnosed with a hereditary connective tissue disorder. I currently take midodrine and the MCAD meds.

I am having an awful time trying to sleep. I have been trying to avoid taking another medication until I get a sense of how the MCAD meds I started are affecting me, but I can't keep going like this. Can anyone suggest a medication that is appropriate for hyper POTS, doesn't cause mast cell problems and helps with sleep? What has worked for you?

I got so desperate early this AM I took diazepam, thinking it would at least help me relax and get some sleep. Strangely, it caused a significant increase in my back and knee pain, as did Celexa after just one dose, over the summer. I have taken both those meds in the past and now wonder if they were exacerbating my pain and I didn't suspect them because I didn't expect this effect, or if this is new. I seem to be reacting strangely to meds, which is another reason I have avoided trying something for sleep.

I'd so appreciate any suggestions. Thanks in advance, everyone.

[potsgirl]

I think there are many of us here that can relate to what you're going through! Insomnia seems to be common with POTS people, unfortunately. I could tell you what I take, but I have orthostatic hypotension and heart issues, along with chronic pain, and so what works for me probably wouldn't work for you. I would ask your doctor for the best thing to try for your sleeplessness.

I take Paxil, Clonazepam (for anxiety), Trazodone (for sleep) and Lyrica for my pain. The first three I take in tiny doses - it's the mixture that works for me. You might have to experiment to find the right drug(s) for you, too. I wish you luck in solving your sleeping problem quickly!

Cheers,

Jana

[Mito Momma]

I take Ambien on very rare occasions. Unfortunately, I usually just lay in bed for 1-2 hours with my eyes closed, counting sheep, before I finally fall asleep. I have only used the Ambien a few times. Those times that I used it I had had something really stressful and/or upsetting happen and I knew I would not be able to sleep due to anxiety, etc.

[Guest tearose]

I can't do medicine so I reach for old fashioned remedies.

warm milk, turkey, bread...

When I tried tylenol pm I had a horrible reverse reaction! The benedryl in it made me feel like I was "speeding"!

Naps during the day may help you. I find a power nap of 10-20 minutes can work wonders to help refresh my body.

best regards,

tearose

[Christy_D]

My son had terrible insomnia, so his POTS dr has him taking Doxepin. It helps with his POTS symptoms, plus it helps him sleep. I've also read that it is prescribed for mast cell disorder. (it has antihistamine in it). On his new higher dose that he has been on since August, he has not experienced insomnia. That is one symptom off the list.

Maybe check with your doctor about it. It has helped him with a lot of his other symptoms as well, we're still working on the nausea that is there everyday.

Christy

[Tia Koul]

HI... I have sleep maintenance insomnia. I have had this since birth assumably. I didn't sleep until I was 30 when a GP told me about trazadone. It saved my life! I take 150mg trazadone, plus lunesta which the sleep doc added. But I can't get off the lunesta now. I would have been happy just on trazadone since it was the only thing that worked. It is a mild antidepressant that happens to work for sleep. Maybe look into it. Good luck. You need to sleep. Getting a better sleep was what immediately helped ALL of my symptoms.

[Sarah4444]

Thanks everyone. Christy, I had terrible nausea for most of the past year. I started the MCAD meds (anti-histamines and oral and nasal sodium cromoglycate) earlier this month and for the first time in a long time my nausea is much better. I don't know if your son has tried this - the only thing worse than feeling like this would be watching my kids go through it. Hope you find something that helps.

[kayjay]

I do not have MCAD... but .5 clonopin has helped me sleep for the past year and a half. It is addictive though and I am cutting back now... again having trouble sleeping. Also would benedryl help you? That has helepd me sleep in the past.

I do think that you are wise to pursue this because you can't get better without sleep! Good luck to you!

[juliegee]

Sarah-

I think Christy is on to something here. Do you take any H-1's at night? If so, which one? Doxepin is a great one- an old-fashioned antidepressant that's also a potent H-1. It saved my life at one point- I took it for about a year. The bad thing is it really dulls your thinking during the day- definitely affects cognitive function

I take 25 mg of atarax/hydroxizine every night, another potent H-1 (equivalent to 2.5 zyrtec.) It is even given to patients before surgery to make them sleepy- no such luck for me . It may relax me a bit though... Because I also suffer from chronic constipation and have to take a hefty dose of Miralax every PM, I sometimes take 1/4 to 1/2 of 25 mg phenergan/promethazine to help with nausea. It is a first generation H-1 and often used for sleep issues AND (this is a big one) it is available OTC in Canada. The combo of atarx and phenergan allows me to sleep well & HELPS all of my MCAD symptoms.

Sweet Dreams

Julie

[ladyt]

hi..

Insomnia is a bigg pain in the ...... . But for a few mnths now mine have been better. And i have had some symtoms lessen a bitt (but not always and still well, not well). I take penegran in the evning. and as low dose asprine as i can. I have ust started takeing the apsrine. It seems to help whit pain and flushing better than paracetamol ....

Macks mom I thing i migth have mast cell issues, spes since allergy pills seems to help me whit some stuff. And i dont have any allergys. But still i do react badly to lots of stuff. But for years i have more constpation than the other. And that is not whit mast cell. But when i gett it to work its well the opisit of firm=) But the people I am trying to gett help from says that penegran dont help peole whit mast cell. But it helps u so? What is atarx..

I have had dys for yrs and yrs and yrs, and I gett more and more confused.

But i ust hope that my sleep ust continue to be mostly better than before. Insomnia is ust awfull. My brain is working hard enough on sleep, whitout it there is ust no way...

By the way somthimes a bitt of popcorn (pop it ourself whit no butter) and salt it, somthimes a lot. That helps me. Popcorn has somthing that makes one more sleepy, like turky and banana. The ting whit popcorn is that it often helps whit feeling unwhel in the stomac, and as ai said a great way to get salt if u need that..

Sorry rambling , but my brain has left the building... sorry..