My name is Marella and I am a chronic headache sufferer. I was diagnosed with recurrent viral meningitis and have felt with significant pain over the past 17 years. I also suffer with occipital neuralgia. It causes very bad but very different pain than meningitis. Needless to say, my pain threshold is very high, having to deal with constant pain.

On New Years day I had developed a very bad headache. It started in the back up my head and just throbbed. The pain was very similar to occipital neuralgia pain and that is what I believed it to be. I didn't rush to the doctor right away. I knew that after a series of 3 nerve blocks, I was pain free for just over a year so I figured that would work this time as well. After sever weeks, the pain did not get any better. It stayed consistent. I was bearable but annoying so I called and made and appointment to see my neurologist.

One February 13, I saw my doctor and described the pain I was having and complained that the pain is bingeing to keep me up at night and make it hard to work. He suggested that I try physical therapy and see him again in two months. If there as any change or if there was no improvement, I was to come in sooner. There was no change and in fact the pain became worse and worse. I waited weeks before going back to the hospital. Finally at the end of March, I could no longer take the pain. I was literally in pain. I thought my head was going to explode. My ears were ringing and it felt like I was under water and my vision was kind of fading in and out and I started to freak out.

I called my neurologist office and let them know what was happening and said either I will need to be seen in the office or, I am going to the ED because I cannot take it any more. I was asked to come into the office. I explained what was happening to the doctor and felt he was about to offer me a new script for pain meds until I gave him my new visual symptoms and ear symptoms. He said maybe you have meningitis again. I said, I said I don't believe that I have meningitis. This is different. I don't know what it is but I need relief from this pain NOW. He said that I needed to be admitted to the hospital and that I needed to have an LP.

It was determined after the LP that I had IIH. I was wondering why the LP had taken so long, I've had them numerous times yet the doctor kept asking for another vial. I found that very odd but was in too much pain to care or question it. I just wanted my pain medicine. The next morning I was given my diagnosis and put on Diamox. I went from a hypertension headache to hypotensive headache as I maintained a spinal fluid leak. A blood patch needed to be done several days later.

I am currently up to 2g of Diamox daily. The pain is much better but sometime it is still awful. I am still not back to work. I am hoping this dose will work because the side effects are awful.

I joined this group hoping to not feel so alone in this as most people cannot relate to pain involved in this. Because the manifestations aren't necessarily outward, they assume there can't be something serious going on inside. I'm interested in learning from the experiences of others suffering with this like I am.

Hello Marella, and a very warm . You have found a great place to visit with others that understand all too well exactly what you mean!!

Sounds like you have had quite the ordeal, and for many years too. I am so sorry it has taken so long for your doc to come up with the IIH, but hope that you will be able to get relief now. The dose of Diamox you are on is probably wiping you out pretty good. The exhaustion can be unrelenting! Are you feeling the pins and needles too? That was the one that annoyed me the most.

I suppose the docs were lowering your pressure by removing many vials of spinal fluid as well as taking samples for testing. Did they tell you what your oprning pressure was? And then to spring a leak afterwords, oh my. Those low pressure headaches are the pits! I hope the patches hld and the Diamox works. Make sure you stay on top of your vision. If you haven't already, find a good Ophthalmologist to keep checking your eyes. Vision is the priority in IIH, even before taking care of headaches.

Yes, we understand all too well the "but, you don't look sick" ordeal. There are many helpful pamphlets on this sick that can help you explain to others just how you feel. In the meantime, feel free to drop by any time, rant and rave or tell us about a great day, or anything in between.




Linda

Thanks for the welcome Linda. I really appreciate it. I think the doctor was as surprised as I to find the high pressure. I think he was expecting something else. My opening pressure was 420.

The pins and needles make me a bit nuts bit at least it is not lasting all day. Up until a few days I've still had to take Lortab every 4-6 hours for pain. My pain is still not resolved thought it is much better. My Diamox dose was only increased to what it is now last Monday. It started at 500mg BID, then 250mg BID, then back to 500mg BID as it was clear my pressure was rising again and the pain was becoming problematic again. It is currently 1g BID.

Aside from the pins and needles and on and off headaches, I am doing better with this dose.

I have a wonderful ophthalmologist. I actually worked with some of the best multi specialty eye doctors in my area, from neuro-ophthlamology, glaucoma, retina to general practice... That has been a blessing as I have people that are literally a phone call away. That I can speed dial at anytime for help with my eyes. Thank God. my eyes are doing much better.

My baseline visual field wasn't very good, but the two that I've had since then were fine.

Hi Marella! Welcome to the group! I'm glad you found us, and I hope that you will find lots of support and great information here! I know what you mean about how people sometimes do not understand how much we suffer because we do not "look sick." It has helped me so much to have an online network of friends with IIH to talk with.

It sounds like you are off to a good start with the Diamox. The side effects are rough, I know. But hopefully it will get better for you as your body adjusts to it. I've been on it now since I was diagnosed in November 2009, and my maintenance dose is currently 1000mg daily. Until recently I was on 1500mg daily. Diamox has done well for me - hopefully it will be the same for you.

*hugs* Looking forward to getting to know you better.

Thank you much for the words of encouragement. This has been a rough road but knowing that I have a support system that can relate makes me feel just a little less insane!

Hi Marella welcome to the group I'm so glad you found us. I know how hard it is and frustrating and dealing with people who dont understand makes it even harder. We're always here for you no matter what, and if you need to have a vent and rant do so, because we encourage everyone to have their IIH voice and be heard.

Heidi

Hi Marella. Welcome
Sad to hear that we have a similair story and that you have to go trough it all.. All i can say is trust your body and your feelings if it still doesnt feel good after using the diamox go to the docter again!
by the question why it took so long to diagnose it? i can answer that it took me 16 months of therapie,LP,and awfull headdaches to diagnosed it. The docter kept saying that it was all in my ears (in the way ... there's nothing wrong with you!), just take a asprine and you will feel better ect! I never gave up! cause i knew it was more than that..

I hope you find relief soon!
Take care,

Love, Mariska
(sorry for my english ;))

Hi Mariska,

Thank you very much for the reply. I don't actually believe it took my doctor very long to diagnose. me. I've been been suffering for so many years with other neurological issues that cause chronic headaches even I though this was some manifestation of one of those conditions.

Both I an my neurologist were surprised at my opening pressure and the new diagnosis. When he came to see me the following morning because I was pretty drugged up with pain meds and following the LP, he asked if anyone had come in and discussed my results with me. I told him no.

He said well you do not have meningitis. I said, I didn't believe I did. and he said, I don't believe this is your neuralgia either though the pain may be similar. He then went on to explain the IIH aka pseudo tumor cerebri. Additional testing was performed to rule out a true tumor or anything else. I must say that when I finally went in because I could no longer stand the pain, I was admitted right away.

I have a hard time because I don't know when enough is to much. The average person not suffering with this or similar issues may have gone to the ED much sooner but because I tolerate a greater amount of pain as do many of the folks here, we may wait a little longer than we should to seek treatment. I try to avoid going to the hospital at all. Now I am just afraid that I might wait to long. I was in so much pain for so long. I cold have gone to my doctor or the hospital at any time but I didn't and I keep beating myself up about it. As I write this I am in awful pain. I just want the pain to stop and for the relief to be consistent. One day I'm ok the next I'm not. :doh