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My daughter doesn't sleep all night. Like she is up until 6am. Ok so I don't let her sleep during the day. Things she has already tried,

Melatonin

Valerian

Trazadone

Benadryl

Periactin

Vistaril

A few antidepressants

Nothing worked except trazadone a bit but she had to quit that due to its side effect of low blood pressure. Sigh. Any suggestions?

June

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They have me on Zaleplon right now to try and sleep, and I'm lucky if I get 3 to 4 hours of sleep, compared to the 1-2 I had previously. They also tried benedryl on me, and when I told them I was only getting a couple hours sleep on it, just to take more. I was taking 8-10 benedryl a day trying to sleep, and still not getting anymore than unmedicated. The zaleplon at least gives me a few hours.

It seems like some doctors are afraid to medicate for insomnia lately.

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I really feel for your daughter. It's a miserable place to be. I can identify with what she is going through somewhat as my illness onset was during childhood also.

I'm afraid I cannot help with regards to drugs. However, something that has got me through numerous periods of insomnia is listening to audiobooks (the type of book and the narrator can make a huge difference, too). Even on nights where I barely sleep a wink, at least I feel rested to a degree, my mind having been solely occupied with listening to the book and not watching the clock, fretting that I was still awake. Lately, it's almost as though I've trained my brain to switch off when I put in those ear buds because I seem to be falling asleep much more quickly. I'm missing a lot of good literature though as I sometimes sleep through until the last chapter before waking to hear the final paragraphs, totally ruins the ending!

I guess I am lucky in that my body is always so tired that I'm happy to lay down at night, even if I can't sleep. However, you say your daughter is up until 6am, or do you just mean "awake" rather than physically up and about?

I always get up at the same time every day (6.30am), regardless of whether I've slept or not or how tired I may still feel. I will sometimes have an afternoon nap though if needed. It doesn't seem to affect how many hours sleep I will achieve later that night.

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Have you tried extended release clonidine?

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Ok looked up both drugs. I'm not thinking either one is ok for a 13yr old. Maybe lunesta but I tried that once and it didn't work and had an awful taste that lingered for hrs. Klonopin is not good for ppl in our family.

But thanks for the suggestions. Maybe the books on tape will work.

Sigh

June

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Yeah, we went through the "what will this make my body do" nightmare before we decided on zaleplon... I didn't want to do ambien because I remembered my mom on it, and it was a nightmare drug for her. I had to carry her to the bedroom more times than I care to remember, and she was still unde the influence of it in the morning something crazy. The zaleplon doesn't seem to have that hangover effect for me, so that's good, I like no hangovers. Just wished it worked longer and I could get a few more hours, but maybe right now my body is getting what it needs.

As for my bp getting too low, the double dose of florinef I'm on I think is helping prevent it from getting too bad.

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I deal with nighttime insomnia and daytime hypersomnia. The sleep specialist I worked with gave me these sleep hygiene tips and they have helped me be able to fall asleep about 4 hours earlier than before:

1) No electronics after 10 pm as the blue light simulates daylight and keeps your brain awake.

2) Find something quiet to do in a relaxing place but not your bed to allow your body to relax and become tired....reading, a puzzle, etc.

3) Only get in bed when you feel tired. If you lay there for more than 15 minutes without falling asleep, get up and go back to quiet activity. Repeat until you fall asleep.

I have an alarm clock with sleep spa sounds on it. I set it to play the most soothing sound to me (the ocean) to play for 30 minutes. It helps keep my mind clear and also helps distract me from my tinnitus while I am falling asleep. This has also helped in combination with the above.

I also found that a regular alarm in the morning was triggering my worst symptoms by starti g my day with a severe adrenaline dump because it was startling me out of my sleep and my body was overreacting. My phone actually has an alarm setting that wakes you up by gradually increasing the volume of the alarm with a sound spa selection of your choice. This has allowed me to wake up in a calm way and be able to function much better in the morning.

I still have had to accept that getting up before 8 a.m. just doesn't agree with my body anymore (I used to be a 5:30 person). I also still have to take a power nap mid to late afternoon for 40 minutes or so. But before instituting these changes, I was having to nap for about 4 hours a day.

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I agree with alarms, that's the main reason I love my fitbit because it has an alarm that vibrates gently to rouse ya. It's been a lifesaver.

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Tyler tried Lunesta and Ambien. They had no effect on him. His brain has very high levels of norephinephrine and clonidine works on this problem. You do have to careful with medications and low blood pressures.

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June

I don't know the answer to that question. I thought they were not in the same family. I thought Clonsapam was the same as Klonopin. My son took this medication several years ago to help with vocal tics but it stopped working for him. I was told Clonidine was an old antidepressant that helped with sleep and had several other benefits. Guess I'll look this up again. Hope you find something that helps soon. Have you tried warm milk or some herbal tea like peppermint or ginger?

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I totallty feel for her. Unisom has a different ingredient compared to Tylenol PM. It is doxylamine, which used to be for nausea in pregnancy, but they found it caused drowsiness and turned it into a sleeping aid. It works for me, benadryl doesn't. I have also used Ambien that also works good for me. I usually have to split it up. It works for 4 hours, so when I wake up at 2AM I take another dose. I hate being dependent on something, but sleep is so important.

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found this:

Clonidine is used alone or in combination with other medications to treat high blood pressure. Clonidine is in a class of medications called centrally acting alpha-agonist hypotensive agents. It works by decreasing your heart rate and relaxing the blood vessels so that blood can flow more easily through the body.

The side effects look pretty miserable. Also since my daughter has very low blood pressure, this med would be bad and interact with her current treatment. Not sure if this one is what you meant. I know I want help for her but I can't risk making her worse. I would try the mint tea though!

Maybe the unasom would be ok. I will check that out.

Thanks everyone!

June

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JuneFlower,

I forgot to mention that there are also some homeopathic alternatives out there. I used a homeopathic called Formula 303 which contains passiflora (passion flower), valerian, and magnesium. I was using it for a lower back injury that was causing me muscles spasms but it is also marketed to help as a calming treatment. Just another option.

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My sleep cycles got totally messed up when I got sick. One thing that my PCP and the sleep medicine doc suggested was doxepin (sp?). However, my POTS doc didn't like the idea so I never tried it. I have seen other people with ME/CFS who've had good luck with it though.

The other suggestion the sleep medicine doc and ME/CFS doc had were to just go with my body's new sleep cycle. I kept trying to use meds to go to sleep at a "regular" time. They suggested waiting until I was tired and going to bed then. Since I tend to feel best and have the most energy at night, I have moved my "normal" bed time to 4 am. Now I can fall asleep within 10 minutes without meds. Still have too many awakenings during the night and have other sleep issues, but at least not tossing and turning trying to fall asleep.

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Thanks, I will look into 303.

4am is late. My daughter does fall asleep eventually around 6am. But school requires her to be up at 6:30 but she doesn't really go. I have to keep trying to keep her up during the day so she can maybe be more tired at night. It is such a war.

June

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If your doctors are reluctant to prescribe any sleep medicine, I would check with them before trying any over the counter medicine too. I think it is very hard to fall asleep with low BP. I have had this too. BP drops even more during sleep so her body may be fighting letting it get lower. I hope she is able to figure out a way to increase her BP and feel better soon.

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We got very lucky, in that the first specialists we saw for my son for POTS prescribed him doxepin. Doxepin is prescribed for POTS and MCAS and Insomnia. It is also prescribed for restless leg syndrome, which he also has. When we didn't think the doxepin was helping him we took him off of it, everything spiraled out of control, the POTs or MCAS symptoms(hard to tell which is which) and the. sleep issues got worse. So the one medication we know helps is doxepin. We give it to him at bedtime and it definitely helps him sleep. Dr Chelimsky was the first to prescribe it to him and I think they picked it in particular because they knew it would also help with the terrible insomnia he was experiencing. He even went through a sleep study to try to figure it out, but it is just a symptom of POTS.

Christy

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Thanks for posting Katie. Interesting findings. Wish more centers would look for these things instead of just apnea when they do sleep studies.

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