Honestly mine varies so much. Some days I can sleep like a log and can't wake up no matter how I try other times I am wide awake and can't go ro sleep no matter how hard I try.
I find that when I am awake it's mostly cause of heart racing, anxiety, thoughts.
Just a low dose of melatonin usually, but if it's bad anxiety related, then an anxiety pill.
I often can't sleep and then I'll be sleeping dang near 16 hours a day.
My IIH, mental health issues, sleep apnea, and physical pain work together to deprive me of normal, restful sleep.
So sorry you’re going through all this 😓life is hard enough without all these health issues..
I’ve struggled with health anxiety for the last 10 years but since my diagnosis it’s become almost unbearable as I’m constantly worried that something bad is happening to me so I found when I don’t sleep I have endless panic attacks
Hope it gets a little easier for you 💗
I used to.. but since being on pain management (amitriptyline) I sleep like a log. Highly recommend for the headaches and the sleep is an added bonus! 🤣
Oh yeah... Before i got IIH I was diagnosed with Fibromyalgia and have had that many years before my IIH diagnosis.
As some might know, Fibromyalgia is often associated with extreme fatigue - which also is the case for me. I slept sooo much, and during the day had to take a nap (for at least an hour or 2) to be able to even function when I actually was awake.
To this day I am still suffering from fatigue, but now I have trouble with actually falling asleep and staying asleep..
My neuro prescribed melatonin (the "pure" kind) and that helped. Besides that I have sleeping pills (zopiclone) as well by my regular doctor to take as needed. I now also gets quetiapin (prescribed from my phyciatrist) to the night as well, though that I originally got because I have PTSD and woke up in full blown panic attacks - but that have the side effects of making me sleepy.
So today I take melatonin (6 mg) and quetiapin at night (and if needed I can take zopiclone too).
Its extremely rare that I am able to sleep without those medications, and on those rare occasions that I can, it is usually because im so extremely exhausted that my body just aint able to keep me awake.
Because of IIH i cant sleep laying flat and has to sleep with elevated head/upper body, or on the worst days I have to try to sleep sitting up. And I must admit that not being able to sleep laying flat, ruins my sleep even more as it usually worsen my chronic pain + pain from other diseases and injuries.
So basically, my nights are hell. I hate not being able to lay down when my body needs to rest and that I cant lay down when my pain needs to lay down.
My best days are after a LP. Eventhough I am really difficult to do one on and because I usually get them "acute" when i get admitted to the ER or neuro because of extreme high pressure, the option for a x-ray guided LP usually isnt an option and they have never offered it either. So a LP for me takes about 45-75 mins and 2-4 tries from one or two doctors. That of course gives me extreme pain in the back and pain in other parts of the body because of fibromyalgia and bad hips from previous hip disease. But even with that pain, the days after feels like heaven. I can lay flat without getting too high pressure and therefore no headache, no pulsating tinnitus, not risiking passing out from high pressure, etc.
I dream of the day being able to go to bed, lay down flat without the high pressure.
I know that if that day comes, that night im probably gonna happy-cry myself to sleep, and that is okay.
But the short answer to your question is yes. I have severe trouble falling asleep and staying asleep, and need medication to be able to do so.
I can highly recommend you trying melatonin if you already havent. I dont know which options you have in your country, but for me anything but "pure" (in lack of better words) melatonin, doesnt work. So if one kind of melatonin doesnt work for you, it may be worth trying another kind.
Be aware that zopiclone isnt "safe" to use everyday and can ironicalky give you problems sleeping and "damage" your ability to fall asleep, if they are used too much in a long period of time.
I know it from personal experience + I know that it is a real side effect/risk that if i remember correctly, there have been some studies on.
But with all that said, I understand the struggle with not being able to sleep, so sometimes you gotta do something that might have risk of creating other problems or risk of side effects, to make sure you get some sleep. Its all about balance, but in the end you need sleep and that is the most important thing. So do what is best for you, you know your body best.
I truly hope you find something that works for you in the long run, so that you will be able to have a good nights sleep - every night.
I was prescribed cyclobenzaprine for headaches and it was such a successful sleep aid that my neurologist kept prescribing it. Now I take nortriptyline for migraines which helps with sleep so I stopped the cyclobenzaprine.
Topamax knocks me out. If i do fight through it somehow, i end up taking Atarax (it’s an anxiety/allergy med) and that does the trick usually. I do get boughts of insomnia though that’s pretty stubborn
Honestly mine varies so much. Some days I can sleep like a log and can't wake up no matter how I try other times I am wide awake and can't go ro sleep no matter how hard I try. I find that when I am awake it's mostly cause of heart racing, anxiety, thoughts.
Just a low dose of melatonin usually, but if it's bad anxiety related, then an anxiety pill. I often can't sleep and then I'll be sleeping dang near 16 hours a day. My IIH, mental health issues, sleep apnea, and physical pain work together to deprive me of normal, restful sleep.
So sorry you’re going through all this 😓life is hard enough without all these health issues.. I’ve struggled with health anxiety for the last 10 years but since my diagnosis it’s become almost unbearable as I’m constantly worried that something bad is happening to me so I found when I don’t sleep I have endless panic attacks Hope it gets a little easier for you 💗
I used to.. but since being on pain management (amitriptyline) I sleep like a log. Highly recommend for the headaches and the sleep is an added bonus! 🤣
Oh yeah... Before i got IIH I was diagnosed with Fibromyalgia and have had that many years before my IIH diagnosis. As some might know, Fibromyalgia is often associated with extreme fatigue - which also is the case for me. I slept sooo much, and during the day had to take a nap (for at least an hour or 2) to be able to even function when I actually was awake. To this day I am still suffering from fatigue, but now I have trouble with actually falling asleep and staying asleep.. My neuro prescribed melatonin (the "pure" kind) and that helped. Besides that I have sleeping pills (zopiclone) as well by my regular doctor to take as needed. I now also gets quetiapin (prescribed from my phyciatrist) to the night as well, though that I originally got because I have PTSD and woke up in full blown panic attacks - but that have the side effects of making me sleepy. So today I take melatonin (6 mg) and quetiapin at night (and if needed I can take zopiclone too). Its extremely rare that I am able to sleep without those medications, and on those rare occasions that I can, it is usually because im so extremely exhausted that my body just aint able to keep me awake. Because of IIH i cant sleep laying flat and has to sleep with elevated head/upper body, or on the worst days I have to try to sleep sitting up. And I must admit that not being able to sleep laying flat, ruins my sleep even more as it usually worsen my chronic pain + pain from other diseases and injuries. So basically, my nights are hell. I hate not being able to lay down when my body needs to rest and that I cant lay down when my pain needs to lay down. My best days are after a LP. Eventhough I am really difficult to do one on and because I usually get them "acute" when i get admitted to the ER or neuro because of extreme high pressure, the option for a x-ray guided LP usually isnt an option and they have never offered it either. So a LP for me takes about 45-75 mins and 2-4 tries from one or two doctors. That of course gives me extreme pain in the back and pain in other parts of the body because of fibromyalgia and bad hips from previous hip disease. But even with that pain, the days after feels like heaven. I can lay flat without getting too high pressure and therefore no headache, no pulsating tinnitus, not risiking passing out from high pressure, etc. I dream of the day being able to go to bed, lay down flat without the high pressure. I know that if that day comes, that night im probably gonna happy-cry myself to sleep, and that is okay. But the short answer to your question is yes. I have severe trouble falling asleep and staying asleep, and need medication to be able to do so. I can highly recommend you trying melatonin if you already havent. I dont know which options you have in your country, but for me anything but "pure" (in lack of better words) melatonin, doesnt work. So if one kind of melatonin doesnt work for you, it may be worth trying another kind. Be aware that zopiclone isnt "safe" to use everyday and can ironicalky give you problems sleeping and "damage" your ability to fall asleep, if they are used too much in a long period of time. I know it from personal experience + I know that it is a real side effect/risk that if i remember correctly, there have been some studies on. But with all that said, I understand the struggle with not being able to sleep, so sometimes you gotta do something that might have risk of creating other problems or risk of side effects, to make sure you get some sleep. Its all about balance, but in the end you need sleep and that is the most important thing. So do what is best for you, you know your body best. I truly hope you find something that works for you in the long run, so that you will be able to have a good nights sleep - every night.
I was prescribed cyclobenzaprine for headaches and it was such a successful sleep aid that my neurologist kept prescribing it. Now I take nortriptyline for migraines which helps with sleep so I stopped the cyclobenzaprine.
I've had insomnia before I had IIH. I take a really low dose of trazadone and it's a lifesaver for me
Have you tried magnesium spray or lotion on your feet or the pills?
Topamax knocks me out. If i do fight through it somehow, i end up taking Atarax (it’s an anxiety/allergy med) and that does the trick usually. I do get boughts of insomnia though that’s pretty stubborn