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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> sleep disorders? mast cell related http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1312408851 Message started by goldielove on 08/03/11 at 11:00:51

Title: sleep disorders? mast cell related
Post by goldielove on 08/03/11 at 11:00:51

I have a hugh problem now with sleep I have never had a problem before getting sick. I can't sleep I have taken numerous sleep meds and they all keep me awake at first my body fights them, I just tried doxepin and wow that though me for a loop I was totally dizzy and had tachycardia and was not able too sleep at all it woke me up even more but had my head spinning and today I am sicker then I have been in a while. My question is does anyone else have this problem and what do I do I also can't take benadryl anymore it wakes me up and gets me wired so bad. ok thanks for any help you can give me I am at my wits end need some sleep.

Title: Re: sleep disorders? mast cell related
Post by Starflower on 08/03/11 at 11:44:06

I used to have a lot of problems with dizziness and nausea at night. That went away once I was taking enough antihistamines and sticking to the low-histamine diet. Not long ago I started having trouble falling asleep... ugh! I was worried that I was slipping backwards, but it turned out to be a minor problem unrelated to my mast cells ;) My doctor prescribed a low dose of Xanax (an anti-anxiety medication) for me to take at bedtime. It makes a big difference.

Heather

Title: Re: sleep disorders? mast cell related
Post by Patricia on 08/04/11 at 13:18:32

Xanax is helpful and sleep is one of the hardest things to deal with or lack of sleep! I read somewhere that the H3 histamine receptor is responsible for triggering the brain to wake up and stay awake!
The minute my husbands eyes open he's up...he has a really hard time falling back asleep and usually wakes up at 4 or 5 am. How can you heal if you're body do nest get adequate sleep and your cells don't have enough time to repair themselves.

My husband tolerates 25mg of doxepin fine but he used to take 25mg of atarax along with that and he would get crazy scary vivid dreams. We cut that out and only use atarax if hes really reactive. He seems to be sleeping better and if for some reason he wakes up at 1am he takes a Xanax because if not he'll be up all night and a mess the next day.

Title: Re: sleep disorders? mast cell related
Post by goldielove on 08/06/11 at 12:48:34

I had a feeling it has too do with histamine, I am on 10mg of claritin and 150mg of zantac and I do take ativan before I go too sleep. I stopped the doxepin and now I tried ambien and wow that works much better, just makes me a little dizzy in the am but I am sure you are right about the histamine thing, I never felt like this before its like my brain is in over drive does not want too let me sleep.

Title: Re: sleep disorders? mast cell related
Post by Patricia on 08/06/11 at 14:54:52

Can't wait for the histamine 3 blocker to come down the pipeline!

He says it's like his brain is going 150 miles an hour and his body is at 20!

We actually just switched from claratin (he was taking that in the am along w/Zantac) to allegra 180 mg and wow there was a big difference.
It was like he was on speed the first 3 days which really freaked me out and then his body adjusted. He just seems a lot better and much more normal.

Again everyone is different and when he first got sick we tried allegra and I had written down that he had a reaction to it. I was very reluctant to retry it but I'm really glad we did.

Title: Re: sleep disorders? mast cell related
Post by kimtg68 on 08/07/11 at 03:18:03

I have ALWAYS been a sleep monster! I never had issues falling asleep and would be grumpy as all get out if someone woke me up. I suppose because a snore so badly that I probably wasn't getting adequate sleep. Since being sick, however, I now wake fully up several times a night and feel fatigued/drained most of the day. I've taken, a few times now, my husbands prescription for Ambien and it works GREAT! I don't do this often because it's his and he needs it. Also I've read it's addictive and I don't want to get hooked on it.
What is this talk of an H3 blocker?

Title: Re: sleep disorders? mast cell related
Post by DeborahW, Founder on 08/07/11 at 05:36:18

Oh gosh, I have always slept great. Now with the histamine blockers, it is even easier to fall asleep the minute my head hits the pillow! So for me, the meds do not negatively impact my sleep patterns at all.

Title: Re: sleep disorders? mast cell related
Post by Patricia on 08/07/11 at 08:39:05

I believe they are still researching, testing or approving a drug to block the H3 receptor.

I think sleep is so important and its really hard when youre waking up in the middle of the night, then the next day youre exhausted and its a vicious cycle.

Title: Re: sleep disorders? mast cell related
Post by jbean on 08/12/11 at 06:02:11

I believe your histamine release follows a circadian rythem (release more at night). It is thought that histamine might have some effect on the centers in your brain that control sleep.

I will often wake up at night following deep REM sleep. Many times after doing so, I will get my mast cell attacks in the middle of the night. My histamine goes up then and it seems to wake me up.

I'm going to try Zyrtec soon and see if it helps me to sleep a little better through the night past this. I take Loratidine now at night, but it makes me a little too wired.

Has anybody else used Zyrtec at night? Did it help you to sleep better? How has Zyrtec worked for you?

I took it once, followed by hot chocolate. I got a mast cell reaction, but the doc is pretty sure it was the chocolate (dark kind). I had taken Zyrtec before alone, no problems, and the dark chocolate gives me a stomach ache right after I drink it.

Title: Re: sleep disorders? mast cell related
Post by MastoGem on 08/12/11 at 06:21:51

Insomnia has been a huge issue for me in the past. It still is if I eat the wrong thing during the. Before I realized the connection I was prescribed xanax. It lead to a five year addiction to that class of drugs and I'm NOT an addictive person. My body just needed more and more to sleep as the drug does some nasty things to your Gaba receptors (which help you feel calm). Getting off them was very difficult, so please be careful if you decide to try those.

I take Zytrec at night. I don't think it causes me problems. The Gastrocrom definitely did when I first started taking it, but that seems to have passed.

I don't know if it'll work for you, but if I do have trouble sleeping now I take Valerian root. I'm newbie so take it with a grain of salt, but it does seem to help if I need it.

Title: Re: sleep disorders? mast cell related
Post by Patricia on 08/12/11 at 06:54:10

Thanks for the tip...I never understood why docs would tell us its easy to get addicted because you just pass out on it. We will be careful, my husband hates to take meds that mood alter but realizes that sometimes hes too wound up, cant sleep or if we know were going into a stressful situation hell take it.

He used to get really bad insomnia when he would eat sushi or a lot soy sauce. He would have really restless sleep...

Title: Re: sleep disorders? mast cell related
Post by DeborahW, Founder on 08/12/11 at 11:40:49

Hi Jill,

I have taken zyrtec for my evening dose for years. It is fabulous. I also take it in the first part of the day as my "extra dose" of histamine blockers if I need one.

Title: Re: sleep disorders? mast cell related
Post by DeborahW, Founder on 08/12/11 at 11:46:01

Be careful with the xanax. When I was first sick years ago and my doc couldn't figure out what was wrong with me, he gave me a tiny dose of xanax to take twice/day or when an attack would start (besides being an anti-anxiety, it is an anti-convulsant - so he said. He gave it to me for my GI attacks). Anyway, while it helped dramatically, it made me so fatigued that I would fall asleep mid-sentence! So, after a couple months I decided to discontinue it. It is a drug that one can become dependent upon. Thus, although I didn't take it long, it took a full month to wean me off of it as we kept reducing the doseage tiny bit by tiny bit.

So, just be careful, because you can't just stop it cold turkey if you are currently taking it daily.

Title: Re: sleep disorders? mast cell related
Post by Patricia on 08/13/11 at 08:20:12

Now that you mention it I have another friend who suffers from terrible heartburn and she tells me that all her drs tell her she has anxiety and always give her scrip for xanax...she has anxiety because no one can figure out whats wrong with her stomach issues!

Title: Re: sleep disorders? mast cell related
Post by iamnotalone on 09/11/11 at 15:52:01

Once again; I find I am not alone- the sleep thing has been a huge pain for me. before I was diagnosed with TMEP; I had whole nights-sometimes 3 in a row; where i was literally awake ALL night. Still do occaisionally. Sounds like theres definately a connection. I take Zyrtec at night now as part of my treatment, and sometimes half a xanax. I have had anxiety issues for years, but am careful with the xanax. It can be addictive, and if you've taken it for a while and go off it suddenly, can be dangerous. This said; staying awake all nite can be just as bad, and aggravate our symptoms. I felt the Zyrtec made me "wired" at first, but now it seems that Im used to it and I do sleep better. Hope this helps :) and sweet dreams !
lori

Title: Re: sleep disorders? mast cell related
Post by Sunny on 09/12/11 at 01:15:00

I take Zyrtec at night also. I can usually trace my sleeplessness to too much coca cola. Also have the same reaction to root beer. I took Xanax many years ago and had a huge reaction - my face was one big hive. My eyes swelled almost shut. It amazes me how we all have different reactions to meds.

Title: Re: sleep disorders? mast cell related
Post by jbean on 09/12/11 at 14:18:45

That's weird about the cola and root beer Sunny. Those same two things bother me as well! What's up with that?

Title: Re: sleep disorders? mast cell related
Post by daowebe on 09/14/11 at 23:41:13

I have sleepless nights as well. If it last 3 days I find myself having visual hallucinations. Everything I take says it causes you to be drowsy but not for me. It aggravates my symptoms and makes it harder to deal with them. I try not to get frustrated because I've found that a good attitude is the best medicine. I think it may be a 'chicken or the egg' thing. Am I not sleeping because I'm about to start into a flare cycle or am I starting into a flare cycle because I am not sleeping. Not sure but I add an extra dose during the night if I'm up anyway. I've tried to document everything but the only thing that seems like it might be relative is my menstrual cycle.

Title: Re: sleep disorders? mast cell related
Post by Joan on 09/15/11 at 12:07:39

Some root beer now contains caffeine. That may not be the problem, but worth checking the labels.

Title: Re: sleep disorders? mast cell related
Post by Lisa on 09/15/11 at 12:25:35

Daowebe, lack of sleep is a known MC degranulator. So, if you are not getting enough sleep, this is putting you into the flares.

Now, what is causing your insomnia, this should be investigated for we can't always blame everything on masto, even though it sure would be easy to do so!!!

So, I suggest you see a sleep disorder specialist and do a bit of investigating into this. It could be your meds, but then there could be another factor involved.

I hope this helps!

Lisa

Title: Re: sleep disorders? mast cell related
Post by missybean on 09/15/11 at 12:28:50

Have you tried melatonin? It works awesome. I don't take it anymore because of all the other night time meds I take. But man that stuff works. I have yet to meet someone who has tried it that said it didn't help to some degree. They say as we age we make less melatonin ourselves and all the artificial light we are exposed to effects our bodies ability to produce normal amounts of melatonin. Stress, trauma....things like that can even effect melatonin levels. Some hospitals have even started giving 3mg of melatonin at night to there ICU patients to help them get better sleep and they say it is working.
Valerian root, it works to calm me down. I haven't taken it for years though. One of my girlfriends takes it when she feels anxiety coming on and she says after that she is cool with anything.....we laugh about, I ask her....did you take your V today? Lol!
Hydroxyzine is sedating. Works good! You can take up to 75 at night. You have to start slow. It's a good antihistamine.
I have taken zyrtec at night and had no issues as well.
One more other thing is calcium can induce sleep, you've probably heard of a warm cup of milk at bedtime. Tryptophan is the amino acid that the body uses to make serotonin, the neurotransmitter that slows down nerve traffic so your brain isn't so busy. Calcium helps the brain use the tryptophan to manufacture melatonin. This explains why dairy products, which contain both tryptophan and calcium, are the top sleep-inducing foods.
Just so you know melatonin can give you some vivid dreams but it usually only lasts a few nights.
I hope you can find something that works for you. Getting broken sleep or no sleep is like torture. I'm dead serious when I say that. Torture! I've been there......problems with frequent waking most likely caused by fibromyalgia. Do you have fibromyalgia? Sleep problems are one of the main problems with fibro.

http://www.webmd.com/sleep-disorders/news/20110119/light-exposure-may-cut-production-of-melatonin
Melissa

Title: Re: sleep disorders? mast cell related
Post by daowebe on 09/15/11 at 13:00:37

I believe you are correct Lisa. I think the sleeping problems are actually related to my seizures. I have had a sleep study but it did not provide any information that was useful to my neurologist. I have also tried sleeping medications but they give me bad side effects. In my 'pick your battles' mentality, I have been dealing with it. I've made some changes in my medication a week ago, which seems to be helping. In November I go back to the Immunologist and am planning on asking her to work with my neurologist or suggest a neurologist that is familiar with masto to see if there is something else we can do. I know the two are intertwined somehow but it is unclear to me what is causing what sometimes. Right now we're working on getting my mast cells to better deal with the seizure meds so I can get to the next higher dose. The only thing that seems to make everything worse is when I am pre-menstral. As you pointed out, it may not be the masto but that has always gotten worse then.