Ugh, so not fun! Sorry you are having a tough time. So you are having trouble with high blood pressure and high intracranial pressure? I would suggest keeping your head elevated in bed, don't lay down flat at all. If there is anyone who can pick one up for you, Bed, Bath, & Beyond sells a wedge pillow that is helpful for keeping your head elevated. Otherwise regular pillows can work, just try to arrange them so that your neck isn't too bent by them. I think people usually suggest avoiding caffeine. Anything that can help you to relax would be good - music or whatever works. Wish I had more advice to give then that. Hope you start to feel better soon!

RN's advice is good - recline in bed, no caffeine. Holding still and minimizing movement is important for me when my headaches get bad. Ice on my head and neck sometimes helps, too. Some people say heat on their neck/back helps them. Eliminating sound and turning the lights down low sometimes helps, too.

Do you have a pain control plan with your doctor?

Thanks guys,. The wedge sounds like a good idea and Ill use pillows for now. My pain plan is 3 hydro in the daytime and one ms contin at night so I can sleep. I have a few challenges. Thanks for the suggestions in my conditions I would of never thought of these things to do, my husbands bringing me tthe heeating blabket that I use to rolll up and lay my neck and shoulder on

so sorry you are having such a hard time right now! I hope and pray you start feeling better sooooon!!

Many with IIH r chemically sensitive and don't realize. A wedge pillow smells too bad and could make ICP go up. Use latex or regular pillows to prop. Foam or memory foam not good.

That is a good point, though I have a pretty good sense of smell and surprisingly I don't notice anything from the pillow. I was worried I would!

Thanks I got through the night with all the rain but not much sleep. My pheripheral neuropathy acting up and I walk around some then my hand turned grey and looked dead. My neuro and I have talked about that symptom before, ugg the list goes on. Welp its afternoon time for food and somethinf for this sharp headache because of storming Im sure is the. Start. But Jesus is tougher then it is.

I am sorry your having a bad day. I am new to IIH and just started taking the Diamox. Today is day 14 of a migraine and day 5 of the medicine. I am starting to wonder if I am ever going to feel normal again. For those of you that have had this for a while, do you start having more good days then bad? I am hoping to go back to work, and start playing with my kids again.

Hi nhoover, it really seems to vary. From what I know, Diamox takes weeks and sometimes even a couple of months to have it's full effect. I had good results with Diamox and was able to wean off of it over a year ago and was in remission. Only "normal" types of headaches during that time. I very recently relapsed (triggered by pregnancy) and am again starting Diamox. Three weeks of on-going headache = totally sucks.

There are some people on here who NEVER get rid of the headache, :( and others who have their PTC treated, recover, and never look back. I suspect we hear from those people less as they are able to move on. I think part of the key is looking for the underlying cause, and while we don't always know what it is, controlling some of the common contributing factors - such as obesity and undiagnosed sleep apnea - can make a big difference.

Chances are you WILL feel a lot better soon, it just take the Diamox a little longer to kick in than I wish it did. Hope it does the job - for both of us - soon! Take care.

Rn4408,

Thank you for the hope! I hope the diamox kicks in for the both of us.

Hey Hungry how you doing today? I hope you are feeling a bit better. Big hugs.

Hi nhoover, maybe start a new thread a put a few more details on, you will get a bit more feed back :) after 14 days what you have probably isnt a migraine??? maybe you can put a bit more background on a new thread. hope you feel better soon too.