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How Do You Manage Your Insomnia?


Mikey69

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HI All,

Ok so as some of you know i'm on day 72 of bad insomnia, which, combines with severe CFS/ME and Fibromyalgia, is making my life VERY difficult.

I've been working with my GP to resolve this. I've been prescribed 2 sleeping meds. Zolpidem and Zopiclone - neither worked and gave me awful come downs.

Amytriplaline 20mg - didn't work at made me feel very weird and unpleasant.

Diazepam (Vallium) 4mg initially - partially worked but gve me awful side effects

I have been managing by taking Diazepam 0.5 - 3mg as needed. THe problem is that it's highly addictive, so can't be used long-term. This has been a 'lifeline', it works for a short while, but my body adapts, then it's ineffective. So i have to keep trying to stop using it (to make sure i don't get addicted, and to stop my body from adapting), hence varying the dose a lot. I've tried managing without it several times and i am unable to sleep at all.

I'm currently getting 0 - 1.5hrs. sleep per night without Diazepam. 3 - 4 hrs. sleep per night when my body had adapted to Diazepam, and 6 - 7.5 Hrs. sleep if i haven't slept in a couple of days and i take a 2mg dose.

I am currently unable to function during the day unless i've had at least 6 - 7 hr. sleep.

Needless to say, i don't really have much of a life at the moment, and neither does my poor lovely lady, who is consistently upset and worried about me (She's very sweet) :-(

i saw my GP this morning (he's brilliant), and he said that i can now only use the Diazepam in an emergency - problem is most nights are an emergency. So things can only get worse. He also said that there is nothing else the medical profession can do for me for the time being - gulp!

I am awaiting an MRI brain scan and Endocrinology appointment, but these will be months away.

So im stuck, at a dead end, etc.

It's our 10th anniversary together on September 10th and obviously this situation isn't going ot be conducive ot our planned celebrations.

We are currently looking into Valerian and other herbal remedies, etc.

I'm also practising very good sleep hygiene, i've cut all coffee, alcohol, caffeine from my diet, etc.

I'm also a good meditator/very relaxed, etc. So i'm using all the 'mind tricks' i can, etc.

I'm wondering how anyone who has had longer term insomnia deals with it.

So, basically, how do you deal with your insomnia, improve your sleep, etc?

hanks in advance,

Mike -)

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Hi Mike,

Here's a list of sleep meds. It looks like there are a few you may not have tried.

http://www.m.webmd.com/sleep-disorders/insomnia-medications

I know this is hard. I usually can't fall asleep until 2-3 am. I've given in and get up at 7, feed the dog and go back to sleep, which I will be doing rt after I finish this post. I occasionally use tylenol PM to get an extra hour of two but, like you mentioned, I can't use it more than 3 or 4 days before it stops working.

I've tried a lot of the basic sleep meds. Several gave me night terrors so that had to stop. I already take amitryptiline for migraine prevention (not that it's working) and 2 antihistamines at bedtime.

I wish I had a solution. I would broadcast it from the mountain tops! I really hope something changes for you.

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Some people find allergy-type meds fatiguing--Benadryl, Zyrtec, Singulair, etc., although some people have the opposite effects. Some people find lilac or lavender soothing and they have massage lotions essential oils in lilac or lavender and even pillow sprays. Neurontin has also been effective in some for sleep. I have had insomnia for 30 years. I just try to 'chill' and know that for a few months I may only sleep 2-3 hours and then I'll have a few weeks where i might sleep 5 hours and the a rare 7, and then back to my 2-3 hours. I try not to stress b/c I haven't found any solutions so its something I can't control. All my doctors are not concerned, they just say "That's your dysautonomia" and "You won't die from not sleeping." But, I still worry some and wonder if they are just dismissive at times b/c they are stumped or it hurts their ego that they can't find an answer. In fact, my thyroid meds got out of wack after I had the flu and

i was hyperthyroid for 4 months--got down to 85 pounds. No one realized it b/c the 140 heart rate was just blamed on the dysautonomia (i normally have a 58 heart rate). The major symptom of hyperthyroid besides weight loss is insomnia. Guess what. I was actually sleeping 8 hours. It was quite nice and I felt normal. Even when i had mono i only slept 4 which is why it took a long time to figure out that diagnosis. The one thing that works for me once in awhile is forcing myself to stay awake all night long, then sleeping that day (even if only a an hour), then keeping myself up another day and a half to go to bed the following night, to try to reset the clock so to speak. Sometimes
I try sleeping somewhere else--kitchen floor, hallway, closet, etc., and even if it doesn't work at promoting sleep, its nice to get different scenery. I know how frustrating it is, especially when you are only getting one hour and with your CFS and fibro! I think its wise to get in to endocrinology. Have you tried a sleep study to see if there is anything they can pinpoint?

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Timely topic as my sleep issues have been getting worse again. I also have severe migraines so I read that melatonin is good for migraine and sleep. Took a half of a 3mg tab last night. Wide awake worse than normal and feel jittery and generally terrible...crossing that off my list. As always everyone is different and it may help some. Just my experience. Hang in there!!!

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I've actually gone up to 4 or 5 months (maybe more) a couple different times, sleeping only about 30 minutes to 2 hours a night. I tried a ton of completely ineffective natural options (melatonin, L-theanine, B6, magnesium, potassium, Valerian, Passionflower, Hops, Chamomile, etc). No success.

Here are some non-benzodiazepine meds or interventions that I've found somewhat effective at different times:

Gabapentin (great for inducing deep sleep in POTS patients, also used for fibro pain) - helped at first, but didn't help long term

Trazodone (miracle sleep med for a lot of POTS patients) - helped a little, but not enough to continue

Calcium/magnesium/potassium cocktail before bed - a good adjunct to my other sleep meds, still doing it, but doesn't work entirely on its own

Vitamin B1 (small dose taken during the day, every other day or once a week) - helps, esp. w/adrenaline, but doesn't work entirely on its own

Multi vitamin (1/4 of a dose only, every few days) - deficiencies in any of the B vitamins, which I did have, can mess with sleep

No TV, computer, or even bright lights 2 hours before bed - I use yellow salt lamps in my bedroom and read, meditate, or listen to an audiobook before bed

Foot massages before bed (activates the parasympathetic system, which regulates sleep)

Dr. Lam's adrenal yoga every morning

One of the other things I also recently learned that triggers my insomnia is poor fluid intake. Do you know if you have low blood volume, and are you on a high fluid / high salt & electrolyte program? If I skimp on fluids and salt for even a few days, my insomnia flares. Right now, I need about 86 oz (2.5 liters) of fluids with 5-10g salt (2,000-4,000mg sodium).

Another trigger for me is excess activity, especially cardiovascular exercise. I have to be very, very careful about overstimulating my body if I want to sleep properly at night. Sometimes hanging out in a dark room relaxing for a day (or a few days) will help get my sleep back on track.

The biggest lifesaver for my insomnia, though, has been Klonopin (clonazepam) on a daily, long term basis. However, I don't advocate going on a daily benzo without very careful consideration. In my case, I was put on it by a POTS specialist, who felt that for me, the benefits were greater than the dependence and withdrawal issues. We had to start with a baby dose and titrate up to where I felt my body was no longer becoming "immune" to it - which ended up being a dose that's equivalent to about 10mg diazepam. I've been taking it daily for about 1.5-2 years. Now that I'm doing a bit better, I'm tapering down off of it, and am doing it slowly enough (10% dose reduction every one to two weeks) that so far I'm not having any withdrawal issues.

This past spring I had some breakthrough insomnia on the Klonopin, and we went through a LOT of meds and supplements that didn't work for that, but eventually, we found a couple things that helped: one, I didn't realize I was dehydrated - an IV fluid treatment helped improve my insomnia about 50-60%. Second, 5mg Ambien (the short acting, not the CR) taken with the Klonopin for only a couple of nights seemed to reset my sleep cycle.

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72 days? I had insomnia for 1 week. Slept at 11 or 11:30 PM and woke up at 3 PM. Once awake, I could not go back to sleep.

It was difficult to work since I felt like a zombie.

I know someone from work who sleeps 5 hours per day. At work, he drinks energy drinks, coffee and coca-cola mixed, takes caffeine pills just to stay awake.

A non-drug solution would be to watch TV. There was a research that it makes people drowsy.

Or perhaps listen to music.

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  • 2 weeks later...

I have a few suggestions to throw out, in case you aren't trying them yet.

-Black out curtains in the bedroom

-Earplugs (I personally can not sleep without earplugs - my brain is too hyperactive and the smallest sound wakes me)
-Magnesium before bed (I drink Natural Calm.)
-Do you sleep alone? (Much to my husband's dismay, I sleep better alone. Also pets in bed can be very disturbing.)
-Are you hypoglycemic? Dropping blood sugar can cause waking. (Eating a complex carb meal or snack before bed can help with sleep)

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I am dealing w insomnia this week. I know how frustrating it is. Since Fri I have been averaging about 3 hrs of sleep per night. I feel very tired during the day and wide awake at night.

Things that have helped me in the past:

  • Continue to get out of bed at normal time, no sleeping in
  • cutting out all caffeine in diet
  • If unable to sleep after 15-20 min get out of bed and read or do something quiet and boring in low light in another room
  • Avoid using anything with lighted screens (computer, phone) prior to going to bed
  • Eating and drinking regularly during the day--no skipped or skimped meals (I tend to eat too little when I am stressed and then feel hungry at night)
  • Getting some exercise, bright light and fresh air during the day
  • Taking a shower, alternating hot and cool water, ending with cool water, is supposed to help, and it has for me, sometimes
  • Breathing exercises for meditation/relaxation
  • Drinking chamomile tea before bed

Sometimes tho, all of these things fail me, and I just don't sleep well for several days or off and on for a week or two.

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Hi all,

thanks so very much for taking the time to write your replies. Your efforts on my behalf are really appreciated.

I seem to be making progress at the moment, which is a good thing. I'm now saving the Diazepam for nights were i get less than 5 hrs. sleep. I'm a wreck if i get less than 5 hours. Insomnia and CFS/ME & Fibromyalgia are poor bed mates. I'm sleeping between 5 - 7 hrs. without meds over the past two weeks. It's not pretty - and it needs to keep improving because i'm struggling very badly during the day, but at least it's progress. I'm currently taking 300mg Valerian, not sure if it's helping, or if insomnia is resolving on it's own.

it's a good job things are improving. I visited a sleep clinic in the North West of England a couple of days ago. It was awful - a total waste of time! Doc. didn't tell me anything i didn't already know. He suggested sleep restriction therapy (5 hrs. sleep per night max). Not a good suggestion for someone with severe CFS/ME & Fibromyalgia!. He also suggested i spent money on an online CBT service, which i don't need! he already confirmed i was doing everything i could to help myself! My partner accompanied me, she was disgusted. best bit of all was that he discharged me from the service, so wasn't even interested in a follow up appointment to see if his strategy works! It was honestly laughable, or at least it would be if it weren't such a dire situation. Welcome to the NHS :-( So basically i've been abandoned. I'm going to speak with my GP, but they also abandoned me because they felt there were no more treatment options, and they hoped the sleep clinic would help. So i've reached an impasse.

I'm very interested in Ramelteon ,but it isn't available here in the U.K. (Surprise, surprise!).

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Hey Mike, what a huge bummer the sleep doctor didn't have anything useful to offer :( I'm sure your just exhausted physically and emotionally from all of this. I know what you're going through, and many others do also. I just wanted to tell you that I think your handling it so well! It is encouraging that you've been able to get 5-7 hrs recently, we'll all keep our fingers crossed for you that this upswing continues! Sarah

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Hi Sarah A33

It's a pleasure to meet you.

Thanks for taking the time to write a reply. i really do appreciate it, and your kind words and sentiments. They really do mean a lot to me.

I do feel i'm coping very well given the circumstances, but I must admit i haven't struggled this much in some 20 years. I'm holding it together emotionally, somehow! I didn't sleep last night, so i'm very physically fragile today. Also a little emotionally upset if i'm being honest. I'm so frustrated with my current situation - i just want my life back!

I'm told it's normal for the severely sleep deprived to get upset/tearful at times because of chemical changes in the brain? Is this true? I hope so, because although i'm fighting really hard. It makes me feel so weak when i get even a little tearful. I liked it more when i was a big strong male! :-) haha!

I'm on day 90 now, i'm so desperate for this insomnia to be over. I just hope it settles down soon.

It's my 10th anniversary with my lovey lady on the 10th September, It's a really big deal for us, and i don't want my insomnia to wreck it all :-(

Thanks again for your kind support Sarah :-)

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Hi Mike,

I definitely experience heightened mood fluctuations when I'm sleep deprived, very emotional and sensitive.  My memory can also be affected, I turn into an even bigger klutz and walk into things!

Totally get the frustration that you are feeling at this point, insomnia on top of having chronic conditions is a lot to go through. I was wondering if you've had a recent blood test of your thyroid and your hormone levels. Those play a huge role in sleep regulation.

Congratulations on your upcoming anniversary and enjoy yourself during this milestone!

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Lunesta (2 mg) is the only thing that has worked reliably for me.

Trazodone only worked for a couple of weeks for me.

Elavil (Amitritypline) (less than 10 mg) improves sleep wonderfully for one night, but also causes rapid heartbeat for me. Only get about one night’s good sleep before heartrate keeps me up. If you don't have a problem with it increasing your heart rate, even a tiny dose can improve stage 3 & 4 sleep. The smallest pill size is 10 mg, but even 1-2 mg can noticeable improve sleep quality. At one time, I could take it, but I can't tolerate even 1 mg anymore. It's cheap.

Antihistamines are similar to Elavil, though not quite as good. I can't tolerate the increased heart rate.

Benzodiazepines give me really poor quality sleep. I've tried about a half dozen, and none worked very well at all.

Ambien gave me rebound insomnia in the middle of the night, and memory loss of the hours before I took it. Sleep quality deteriorated after about a week or so.

Neurontin (Gabapentin): Worked great for a month or so. Then worked fair. Then quit working, and I had a horrific withdrawal. My doctor said that withdrawal like mine is extremely rare, so it's not an issue for most people.

Magnesium: No noticeable effect.

I’ve tried just about everything. If you are curious about something that I didn’t mention, just ask.

I use a CPAP machine, even though my sleep study didn’t measure any apneas. I’m an extremely light sleeper, and woke from light snoring. The new CPAP machines are great. They assist with breathing, and I sleep much better with one.

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Hi SarahA33,

Thanks for the additional info. Luckily for me i'm well in control of my moods being a deeply spiritual/meditator person, otherwise i think i would be really struggling by now. Though i must admit the sleep dep. has been having quite an impact at times. Anniversary break was great in the end. Four days of rest and relaxation, with some gentle walking outdoors. I am now sleeping without Diazepam more frequently, though still not sleeping well, so i hope this is a good sign. I'm without Diazepam more often than with at the moment, so fingers crossed. I have had so many tests done, and all have come back normal/optimal thus far. I'm seeing an Endocrinologist soon, so hopefully hormones may be investigated.

I'm now having major issues with high blood pressure, which i understand Dysautonomia can cause, as can sleep deprivation. I'm currently at 149/90 and that's WITH beta blockers! Not good, they seemed to be working well at first. Back to Docs tomorrow!

Has Dysautonomia and/or insomnia caused high blood pressure for you or anyone else?

Take care,

Mike :-)

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Hi jason_x

It is good to meet you. Thank you for taking the time to write such a detailed response. YOur efforts are appreciated. Sounds like you've tried everything! Can i ask how long you have been dealing with insomnia? I'm on day 96 and i don't want to be stuck with this problem - it's playing havoc with my CFS/FMS and causing high blood pressure

Cheers,

Mike

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  • 1 month later...

Sorry you're strugging. Insomnia is difficult to cope with and can have a massive impact on your psychological state. I know it did for me.

I'm taking quetiapine 25mg an hour before bed. It works brilliantly, leaving no horrible residual effects the following day.

It's an antipsychotic in much larger doses but can be prescribed off label for insomnia in smaller doses. Its been a wonder drug for me.

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Hi my new friends,

Insomnia is brutal because it seems to increase all my Dysautonomia, POTS, fibro, etc. issues. I get migraines with auras, often after a night's ups and downs. Also we have found it affects my heart rate and blood pressure, etc. my primary is working along with my neurologist and calls these disorders A MESS! So, I too have been on many sleep drugs, plans, etc.

If any of you noticed, they cut the allowed dosage of Ambien in half. Regulation? It really doesn't do anything for me now. So she sent a script for the new insomnia drug Belsomra. However, when my husband went to pick it up, the pharmacy said they were waiting to see if my insurance would cover it? Otherwise it's about $300. a month :(. Has anyone tried this new drug? I have Medicare and a supplement but usually can only have generic drugs? I'm praying they make an exception.

So many difficult things to deal with but no sleep magnifies everything. Life still goes on and I have responsibilities for three elderly relatives. No, I can't physically care for them, but decisions must be made. HELP? I'm in desperate need of sleep.

Grace

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In the past I have tried Trazodone, which only helped for a short time. Since then I have been diagnoised with Idiopathic hypersomia.

Which basically means that no matter how much I sleep, I am still very sleep deprived. It is very disabling. The only thing that helps me is swimming. It makes me feel more alert , and I funtion better. I have to be careful though. I do warm water exercise...just stretching is the best. Two much exertion can just overstimulate me, and then I can't sleep.

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So I recently started gabapentin for hyperasthesia caused by my migraines. As a pleasant side effect, it has helped me with my insomnia. I am able to fall asleep 2-3 hours earlier and I'm able to stay asleep and feel well rested. The thing that wakes me now is having a full bladder about 4-5 hours into sleeping but I'm able to get back to sleep fairly easily. It has helped me start to move to a more normal schedule again.

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