Discussion Topic

IIH and balance issues

Posted on 07/24/11, 02:26 am
Hi everyone. I am new. I was diagnosed with ptc or IIH a year and a half ago. Peculiar enough my primary complaint is balance problem, brain fog, dizziness. Headaches do occur but are not my primary symptom. I do feel pressure in my eyes when my symptoms are worse and my neck is often stiff and is usually where my headaches start. My headaches are a few times a month and can get bad but when I get in a slump it is usually a headache followed by dizziness/ brain fog that can last anywhere from 1 week to months. Does anyone else experience similar problems? I was diagnosed with a tap opening pressure 25. we tried diamox and topamax but it did not help much. Lasix has worked wonderfully for me but it seems that my body adjusts and I am needing more( an adjustment) every 6 - 8 months or so. Also, my symptoms are worse around my cycle. Usually only bad then. My symptoms also increase when I try to exercise regularly. I am worried about hitting a ceiling with lasix and needing a shunt in the next few years. Very worried about this. Any suggestions?
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  • Reply #1 09/04/11  12:49am
    Hi...also new to this group as was just diagnosed on 9/1/11. Sorry my reply is long but my situation is complicated. I have questioned the docs about having increased intracranial symptoms for years but they didn't think I had it since my MRI's were negative. I have had headaches since before my son was born and they always attributed them to either migraines, head trauma (several car accidents and a work accident where I shattered my nose and facial bones), or a pituitary microadenoma diagnosis in 1996. Noone could explain the downward pressure from my neck along my entire spine, with me telling the docs that there was sometimes a feeling like my spine had "lumps" sticking out that were extremely painful and caused paresthesias, loss of function, spasticity in the muscles, and problems with me being able to walk and move my arms, and bowel/bladder dysfunction. There was severe burning pain, sometimes in the front of my body; but mostly along the back along my spine radiating outward but it didn't show up as a disc bulge etc on MRI or CT scan. About 2 years ago, I got frustrated and got my own MRI's and noticed a bulge of clear fluid at the base of my skull on one of my scans. Although I brought it to the doctor's attention, they dismissed it as "artifact" or a wrinkle in the sheets behind my head, although I could show them the lump that was in that spot on the back of my head....they told me it was a swollen muscle and I was an overly anxious person and should see a psychiatraist. (She said THEY needed a psychiatrist!). My severe headaches started over 15 years ago, sometimes with hemiplegia, partial blindness, neck stiffness and severe nausea and vomiting (like meningitis), and causing me to be hospitalized at least 24 times over the past 3 years. This past winter I had 4 months of projectile vomiting, lost almost 50 pounds in 2 months, couldn't stand up without having a "jack hammer" headache that would decrease when I laid flat, and severe pain down my neck and spine radiating outward to my hands and feet which both turned bright red and would "beat". I also told them I could hear my heartbeat in my ears and there was clear fluid that would come out of my ears, or run down the back of my throat causing a metal taste in my mouth. My blood pressure was all over the place but the scariest was when it dropped to 80/50 and I was so weak I became unable to walk. They put me in the hospital for "pain management related to fibromyalgia" and after 4 days wanted to discharge me but I was so weak I ended up in a nursing facility needing physical therapy to be able to sit up and support my head and try to walk with a walker. I kept begging for them to do an LP but they wouldn't; one nurse told me when I told him I was having mini blackouts "maybe I will call a code". and walked away......when I think now how they dismissed me and my symptoms and how sick I have been I know I should be so angry, but instead it just makes me scared for the rest of the patients that aren't being cared for or diagnosed. My opening pressure was 25 and I had to lay flat for 3 days because they thought I had a "leak" but instead it was a mild "cauda equina syndrome" and the continued increased spinal pressure which has started to resolve now that I am taking Diamoxx. I can't believe how great it feels not to have that feeling like my brains were bulging down into my throat, that pressure behind my eyes and the decrease in double vision and dizziness that was so constant, the lack of feeling the pulsation of my heart in my neck, my eyes, and my ears, and being able to stand upright for longer than a few minutes without feeling like my spinal cord was crushing all of the nerves going out to my hands and feet. I am hopeful that the Diamoxx works for me long term but I know you can become refractory. A 94 year old neighbor was mistakenly diagnosed with dementia until she started taking lasix for her congestive heart failure and when the ICP went down, she went back to her old self. She is doing great now. From my research, I am understanding that artificial sweeteners, caffeine and salt intake, as well as any lifting, exertional movements can make your ICP become elevated. I also have read that stress (increased cortisol or blood pressures) can make it worse. Losing weight is supposed to help so I am going to a nutritionist or Weight Watchers again to see if that will help me. Before I knew what I had, I was using a nettie pot and humidifier in my rooms to decrease the chance I will get sick, and was taking benadryl as soon as I started to get stuffy (supposed to decrease ICP too), and making sure I got enough sleep (not easy when you snore because your posterior throat is swollen), I am going to try yoga instead of walking or aerobics (I really want to Zumba!) and biofeedback or accupuncture/massage. Have you tried any of these? I pray that you will have continued success with the Lasix....hugs, B

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