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 Do any of you have insomnia since diagnosis?

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DefyTheVerdict
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PostSubject: Do any of you have insomnia since diagnosis?   Wed Dec 03, 2014 3:09 am

I have IH and also depression and anxiety, which were present to a lesser degree before the diagnosis of IH.
It has been very difficult at times differentiating IH symptoms and anxiety at night when I try to sleep.  The insomnia has been consistent even when the anxiety and depression are under control.  
I have a VP shunt.  Ever since it was placed, at night I have this sensation, almost like a motor, or energy, at the spot of the shunt.  I'm not sure if it is just pressure or an effect of the shunt, it makes sleeping sometimes impossible.  I have regularly gone two and three days with little to no sleep many times over the last 6 years.
My question is do any of you have insomnia and do you consider it a symptom of IH?  The neurologists I have consulted (one at Mayo clinic in Jax, FL) usually do not categorize insomnia as an IH symptom, but if it is just anxiety then I can't explain the whirling motor feeling in my head at the shunt site.
Thanks, and even without sleep, and other life events, my life is still meaningful, I find some kind of gratitude every day, it makes life better.
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Betsy
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PostSubject: Re: Do any of you have insomnia since diagnosis?   Thu Dec 04, 2014 9:12 am

Yes! I am definitely sleep deprived.  I don't have a shunt, but I often can't get my head to settle down and let me sleep.
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Sophiasmom
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PostSubject: Re: Do any of you have insomnia since diagnosis?   Sun Mar 01, 2015 7:14 am

you might be interested to look up Dr. Barry Krakow's research on insomnia.
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SyrahSux
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PostSubject: Re: Do any of you have insomnia since diagnosis?   Fri Sep 18, 2015 11:53 am

I know this is an old thread, but I'm wondering how you are doing?

Hopefully all is better! But if not, I suffer from tinnitus which makes it almost impossible for me to sleep. What I do is I sleep with headphones in so I can't hear any tinnitus / noises which may set off my anxiety. Also, I've started to make a schedule for my self which includes setting alarms at multiple times of the day for different things. 
Over time my body realizes when the end of the schedule is and I get super tired.

If all else fails you could discuss with your GP how melatonnin would work for you?
I'm not sure if it interacts with depression/anxiety/other medication badly, but I know just one tablet knocks my partner out within 10 minutes.
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Heidi
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PostSubject: Re: Do any of you have insomnia since diagnosis?   Sun May 29, 2016 8:07 pm

[You must be registered and logged in to see this image.]❤️ Dee ❤️ (@Denise_Tanya)
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Crg553
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PostSubject: Re: Do any of you have insomnia since diagnosis?   Thu Jun 09, 2016 7:29 pm

I have had insomnia off and on since the headaches all started. I always thought it was because the whooshing in my ears becomes SO annoying and the pain flares once I lay down.
So between the annoyance and tossing and turning to get comfortable because of pain, it is impossible to go to sleep. You work yourself into a frenzy trying so hard to go to sleep as well. I have stared at the clock until 5-6 am several nights/mornings to turn around to an alarm at 7 am.
I've always been one who needs about 9 hours of sleep to work properly, but since all of the symptoms arose I have yet to find a magic number. It seems like I can sleep and sleep and have soooooo much trouble waking (like I'm sedated) or I can't sleep at all.


Measure your life by acts of goodness, not by years!
Take care y'all!
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Sophiasmom
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PostSubject: Re: Do any of you have insomnia since diagnosis?   Sun Jun 12, 2016 6:48 am

for me the insomnia is caused by sleep apnea, which in turn has been the biggest trigger for the intracranial pressure.  treating the sleep apnea is the only thing that has given me relief from IIH.  Dr. Krakow showed that most night awakenings are caused by sleep breathing events, not all the other things that people think cause them.
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Thesummerone761
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PostSubject: Re: Do any of you have insomnia since diagnosis?   Mon Dec 26, 2016 5:11 pm

I have no experience with depression or anxiety but I have many nights where I can't sleep because of the pain. The worst thing is, I have actually found painkillers that work and allow me to sleep but when the pressure rises I get so foggy and confused that I am not aware I should be taking them, or even that it is the pressure headache that is making me feel so horrible.
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Sophiasmom
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PostSubject: Re: Do any of you have insomnia since diagnosis?   Tue Dec 27, 2016 4:25 am

oh yeah, the brain fog makes me so confused sometimes that I forget what I'm supposed to be doing to take care of myself.
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medmisfit
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PostSubject: Re: Do any of you have insomnia since diagnosis?   Tue Dec 27, 2016 3:41 pm

I do still have occasional nights when I have to sleep with my head elevated..it's not the most comfortable sleep, but does help with the pressure/pain. I just prop myself up with pillows at 45-60 degree angle and it does help. I also use and eye pillow when I have vision problems or eyes ache, which also seems to relieve some pressure and helps me relax.

I do have issues with insomnia, but usually it's falling asleep. I don't have problems when my pressure is under control, but have a horrible time falling and staying asleep when it's a mess..storms and weather changes, as well as food, seem to affect me the most. I did have a sleep study and tried the different treatments, but my headaches just got worse. They didn't seem to think it was related since my problem was mainly falling asleep, so I'm not doing anything at this point. I also took sleeping pills for awhile, but had crazy side effects and decided it wasn't worth it. I also don't tolerate medication very well, so elevating my head and using the eye pillow are better options for me.
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Sophiasmom
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PostSubject: Re: Do any of you have insomnia since diagnosis?   Tue Dec 27, 2016 4:53 pm

I found that CPAP at the right pressure for my OSA, made my ICP go up.  I describe why this must be happening in one of my papers.  the only sleep apnea treatment that worked, besides the jaw surgery, was the tongue retaining device.  but it only worked if it stayed on all night.  having OSA and IIH at the same time is a very tricky problem.  OSA makes IIH worse, and must be treated almost perfectly in order to not do that.  the CPAP seems to just cause more problems with ICP.  BiPAP was better but not at all ideal.  any doctor who doesn't realize that the insomnia is certainly caused by the OSA, doesn't know enough about OSA.
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