I have IIH, no doctor understands the pain I am in.
Posted , 5 users are following.
I was diagnossed with IIH in November of 2014. I was having the worst head pain for about 2 months that would make me scream, cry and my vision would go in and out all day long until I would finally pass out. My husband didn't know what to do, my 2 boys were scared that they would loose me, and I couldn't care about anything. Finally I made an appointment one day with my eye doctor and he had me rush to the hospital with a piece of paper he wrote on. Thats when they did a lumbar punctor and admitted me for 3 days. They had a neurologist and an optamologist come in and told me that I have IIH.
They sent me home with a script for Diamox which didn't do anything but make me forget everything that I needed to remember. It also did nothing for the pain and I was back at square one with that and not being able to do anything.
They have tried a lot of different meds for me with no good results. I am living day to day a little over 2 years now with the pressure headaches. I don't know what to do. I can't do anything with my kids, nothing for school for them, nothing during vacations and I can't work.
I feel like this is becoming a punishment not only for me but for my 2 boys too. It's not right that all the doctors want to do is LP's that don't help and make it worst. Or shunting that hasn't been proved to do anything for the pain. Is there anyone out there that understands? Anyone out there know anything that might be able to help me? I am feeling alone and depressed because my whole life is pain and darkness now. I can no longer see a light at the end of this tunnel...
1 like, 5 replies
becks123 amber21623
Posted
So sorry to hear about your pain amber21623. My husband is going through the same issues since 12/2014. Have you had loss of peripheral vision as well? That is the only test that has come back positive for him, but they still don't know what is causing all of it. His LP's come back with a not very high pressure, but they still diagnosed him with IIH. He feels the pressure none the less. He also gets pockets of liquid around his skull that move around. Very strange.
amber21623 becks123
Posted
Yes i have problems with my optic nerves more so on my right eye then my left. When I've had the LP's they got fluid the first time but not the second. I am sorry to hear about your husband. I know my husband has trouble because he can't help me, so I know the struggle it must be for you.
melanie61979 becks123
Posted
Hi becks! How is your husband? I am going through the same. I have papilledema and my opening pressure was 9. Makes me wonder if the diagnoses of iih is correct. Does he still have the diagnoses of iih? Or have they figured out something else? I don't have brain tumors so the docs feel like the papilledema is coming from iih but I'm not so sure.
LP1981 amber21623
Posted
I hope this reply finds you doing well.
I was diagnosed 2 1/2 years ago. I'm on a list of medications (none of which help w the pain of the headaches). I've undergone a lumbar puncture while on diamox, which showed my pressures to still be high.
Recently my neuro started me on magnesium supplements saying there are recent studies that show it helps with the headaches, however I cant say that it has honestly.
One thing that I have found by going to talk to a nutritionist (believing that if I lost weight, it would cure the headaches...i lost 50 lbs and it hasn't helped). But the one take away I did get from her is that salt and vitamin A has a big impact on increasing your spinal fluid pressure. I have cut salt out of my diet, which does help and i stay away from foods high in vitamin A. It doesn't keep the headaches away completely but it helps.
sydney38427 amber21623
Posted
I am 15 years old and I was diagnosed with IIH about a year ago. With the lumbar punctures, your doctor can decide on a brain shunt and that is supposed to help tremendously. Just thought I'd let you know