Insomnia.

[MandaJ]

Does anyone have to deal with insomnia?

Do you get treatment for it?

I'm honestly too scared to call my neuro, because I was supposed to do some blood work, and haven't because i haven't decided if I want to start treatment yet. So I am afraid he is going to be upset with me. But its getting ridiculous! It's 530am and i still can't sleep. It's incredibly frustrating!

[SilverLinings]

Does anyone have to deal with insomnia?

Do you get treatment for it?

I'm honestly too scared to call my neuro, because I was supposed to do some blood work, and haven't because i haven't decided if I want to start treatment yet. So I am afraid he is going to be upset with me. But its getting ridiculous! It's 530am and i still can't sleep. It's incredibly frustrating!

I too deal with insomnia and have Ambien to use when it gets really bad. I do much worse when I'm not able to get regular sleep and completely understand how frustrating it can be.

[MSW1963]

I had an extreme case of insomnia, not sleeping for days, with convulsions during unsuccessful attempts at sleep. Sleep aids were not very helpful, leaving me sleep deprived the following day and hungover from the sleep medication.

I also started experiencing burning-cold pain in my arms that brought me to tears, particularly at night making sleep more difficult.

Over the years the insomnia eased up so that I slept for intrevals of an hour or so at a time during the night, followed by being awake for a couple of hours, falling asleep again or not.

I started a MS therapy about 10 months ago and within the first 2 months my sleep returned to normal.

This may sound overly dramatic, and I appologise if it does. I only wish it was for high drama and I hadn't experienced the effects of this level of sleep deprivation for the 10yrs that it continued.

[Shiela]

MSW1963 Wow! That's interesting. I'm supposed to start treatment this month. Hope it does the same thing for me. I had insomnia very bad from the time I started symptoms to present (2 years). By very bad I mean some nights I wouldn't sleep at all, most nights not even 4 hours but not in a row. Tried diazepam, ativan, Tranquil, Hydrocodone/Acetominophen, Niquil, and probably many more. Even mixed them to no avail. Lunesta did work though.
Price tag put it out of my range though. It was about $200 per month.

It is a very frustrating situation. I ended up going to a sleep doctor who was a shrink for a sleep study. She did the lab but about the same time I got my dx. I never went back to her. I had made up my mind that it was a neurological problem and could not be behaviorally modified. I had already tried everything she talked about.

Hubby and I decided it was best to sleep in separate rooms so if I did get a chance to sleep it wouldn't be interrupted by movements or his getting up in the morning. That helped just a tiny bit.

[MSW1963]

Hi shelia, when I started Tysabri I had a wish list of sx's I hoped to improve or resolve. My list consisted of insomnia #1, bowel incontenience and fatigue.

I think the 2nd consecutive night of full sleep I woke up and realized that I'd slept those 2 nights uninterrupted. That was 8 months ago.

The incontinence is also resolved since starting T. It began as a sx in close proximity to the insomnia, about 10yrs ago.

Fatigue has increased since starting T. It's was more pronounced the days/weeks following infusion. I think the past couple of months fatigue following infusion is only more pronounced for several hours after it's administered, so it might be leveling off a bit.

I also think mood and a couple of other things have improved also. I'm stunned and overjoyed with my results so far.

[wkikta]

I take 2x25mg of Diphenhydramine(Benadryl) at bedtime. It helps me fall asleep significantly. It is the same Drug in the PM OTC Medications, just no pain killer. Get it at Sam's.

[MSW1963]

wkikta, so happy you found relief for your insomnia. Rest assured, (pun unintended), after 10yrs dealing w/insomnia I've tried but failed to initiate sleep and/or sustain it regardless of supposed sleep inducing substance involved.

[Shiela]

Thanks for the tip Bill. Amazingly that is one I haven't thought of.

[MandaJ]

My doctor gave me ambian once when I was on a steroid treatment. It worked very well. I just am afraid to ask for it because i don't want to look like I'm a druggy. (not saying people who ask for stuff are druggies. im just scared of doctors I guess)

[jillsmom]

Sleep help

I am on ambian. I asked my dr. if it was o.k. to use regularly and she said that MS patients need all the sleep they can get so she told me to continue and I sleep when I use it and have trouble when I don't. Good luck.

[dpmich]

When you talk with your Dr about medications, please do NOT hesitate to tell them you can't afford the high co-pays. I just told my family dr that, and he went and re-wrote a different brand rx. I also went to the drug manufacturer's web site. When I did that I ended up only paying $25 for 3 months of med not the $100 monthly originally rx'd. Don't be afraid to advocate for yourself. Take what help you can get.

Debbie

[tiffdulla]

i've been dealing with insomnia for yrs. i'm afraid of taking anything for it, so i've kept this a secret from my neuro (probably really stupid thing to do) but i'll be awake for a day or so until i pass out for an hour or so. its a cruel n viscious cycle. sometimes i can work myself (excercising, cleaning, whatever it may be) until im so tired i pass out for a few hours at a time. i have young children so it scares me to take any kind of pill to make me sleep. im afraid if there's an emergency, i won't wake up.

[gellexi]

Insomnia

I have had insomnia for many years. Tried various meds. The only one that helped my insomnia consistently is Elavil. Elavil is used to treat depression, but as a side effect it can help with sleep. The good news is, it really does help me fall asleep and stay asleep. The bad news is, I started out taking 5 mg at night, but over the years I have had to gradually increase the dosage. I now take 125 mg at night (plus 1 mg of Ativan). Sounds like a lot, and it is, but at least I can sleep now.

[Bandito]

I went through a period of time when I just couldn't sleep for anything. Either I'd wake up an hour after I went to sleep or I'd wake up five or six time during the night, each time taking longer to get back to sleep. My PCP put me on Lunesta but it didn't really seem to have an effect. I eventually started sleeping somewhat normally again, though I can't sleep late any more. Eight hours seems to be my cutoff. I used to be able to sleep until noon all the time. I will say that the sleeping seemed to even out when I started Gilenya. Much better than Avonex.

[foxz71]

I'm glad I found this post. I've been dealing with this for about a month now. I thought it would pass but it just seems to hang on. I may try the benedryl suggestion before going to the doctor with it. Thanks!