Possible IIH and could use encouragement
Posted , 5 users are following.
Hi all,
I have been sick now for going on seven months and the doctors just can't seem to diagnose me with anything for sure. I've been seeing a neurosurgeon who suspects I have IIH and saw possible swelling on my brain. This all began after I received a vaccine and The following day I had sudden severe dizziness extreme pressure in my head and visual disturbances. Originally they thought I had an inner ear infection but there's really no way to know for sure. I do have a mild Chiari so this makes more sense. The pressure in my head is so severe sometimes that I just feel like I could pass out. Yesterday I was prescribed Diamox and it seem to relieve some pressure but right now I'm having a hard time with the side effects. It's sort of giving me flu like symptoms but it's still better than having the pressure in my head. They told me I need to give the medication a chance to adjust and if it doesn't work they'll have to do a spinal tap. I'm very scared and could use positive posts only and any advice any of you have . Thank you!
0 likes, 6 replies
RachRoux jennifer_08036
Posted
Hi lovely sorry to hear you are going through so much at the moment I understand how awful it is to have horrible pressure headaches like your head is just going to burst. Meds do take time to take effect so try bare with it and the side effects, I have found that starting short guided mindfulness and progressive muscle relaxation each day has helped me to cope with the pain a lot better. It focuses a lot on breathing and I find just slows things down a lot there are so many free downloads online I do encourage you to give them a try. Make sure you are being kind to yourself whilst going through all this, are you giving yourself the extra love and care you need? I think it's so important when we are unwell that we look at self care as a lot of us do. We try to plow through sometimes playing catch up on the slightly better days we have just to crash and burn on the terrible days. Look after you. If you do need the spinal tap it's not as bad as it seems its more just an uncomfortable feeling than pain really, not anything to worry about at all. Take care, sending you strengthening hugs Xx
jennifer_08036 RachRoux
Posted
Thank you so much!
the diamox is definitely relieving pressure in my skull it's just making me feel me feel really run down. At first I didn't get headaches then began to get really severe headaches behind my eyes and eyebrows. They even made me sick to my stomach. The doctor says I don't really fit into one diagnosis which is good but at the same time it's made me suffer longer as they try and figure it out. But in hopeful that I'm on the right track! Like I said, the pressure in my head has been so severe that some days I just can't hold my head up and it's given me neck problems. So I think we're trying the right things now. Thank you so much for encouragement! It's been a really long scary journey but hope to get back on my feet soon 
RachRoux jennifer_08036
Posted
The headaches I am struggling with sound really similar right behind my eyes and eyebrows and they seem to effect my neck real bad too. I can't lay down or tilt as the pressure gets so intense its like my eyes and ears are going to pop. I'm constantly feeling sick too which is hard. It's pretty frustrating that I have a long history of migraines so my neuros are saying its probably migraine related however I'm really not convinced as I've never had pressure headaches with my migraines I can literally feel this fullness like drain out of my head when I get up on a morning as laying is just so awful. Getting botox soon so we shall see as no meds are responding. Keep pushing until you ffeelyou are receiving the right treatment I know I definitely will be doing. Even though it is so tough. Here if you ever need a chat, I understand just how exhausting headaches can be. Xx
hollygb66 jennifer_08036
Posted
sally12646 jennifer_08036
Posted
Hi, I went for a routine eye test and they found swelling on my optic nerves, after many eye tests and a mri they decidedly it was possibly IH and decided on a lumbar puncture to confirm it yesterday, the lumbar puncture failed so after a lengthy discussion they've gave me medication, but I'm not getting headaches or blurred vision. Now the top consultant isn't happy with this decision and I have to go back on Thursday to discuss another lumbar puncture/spinal tap and I also need a visual field test, the medication I've been given is acetazolamide and I'm getting pins and needles in my hands and feet but they said that's normal!
becks123 jennifer_08036
Posted
Hi,
Just wondering how the medication has been working? My husband was just diagnosed with IH as well but he has been suffering with severe dizziness and headaches for about 10 months now. He already had the spinal tap and just discovered the high pressure, but every test he has had has come back "normal". He cannot work or really function at all. It has been terrible. He has been prescribed a diuretic and that is it. Any news for you?