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 Penny Diagnosed 2009

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jdpenny
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PostSubject: Penny Diagnosed 2009   Mon Oct 15, 2012 7:11 pm

I was finally diagnosed back in 2009. Before I was always told that I have migraines. I kept telling anyone who would listen even a little bit that I felt that there was more to this than just migraines. When I had my eyes examined in 2009 I told her how I had lost complete eyesight in one eye at least three seperate times. She stated that I should see my primary and a neuro-oopthmologist as soon as possible. When I did I was told that I had a lot of swelling and was immedialtely sent for a series of MRI's and a CT scan of the brain. Both, thankfully, were negative for a brain tumor. It was then I was told that I have psuedotumor cerebri. I had to have a lumbar puncture in which I had an opening pressure of 29-30. The CSF was drained off. I was sent homp with a severe headache. I couldn't stand any kind of light nor could I hold up my head without screaming in pain. After this I was told that I was find and that I shouldn't have any more problems.

Fast forward to 2012, The symptoms have been coming back since the last LP and would not go away. Now I have stabbing headaches with pain in my shoulders and down my back. I had another LP done is august of this year and was told that my opening pressuree was a 24 and I really shouldn't worry to much about it.. I kept telling the doctor of my stabbing headaches/pressure headaches. The pain is so intense at times that all I can do is grab my head and cry :( . Funny thing is I am told that my pressure wasn't really thiat high and maybe my stabbing headaches/pressuree headaches all "all in my head" and that maybe I'm just trying to get attention. The nerve!! I was put on Diamoxx and found out that I am allergic to it (just my luck) now what??

Can someone, anyone tell me do they have the stabbing headaches and the pain/pressure headaches? What can I do about them. I am just about at my wit's end!!!! I am finding it hard to function with just everyday activities. I do have other medical issues but this psuedotumor is really driving me crazy!!! The medical staff isn't really llistening to what I am saying,. I am open to suggestions. There isn't too many around me who really understands what I am going through. It's so hard to concentrate or spell anything. I fell as if am just extremely stupid and alone.



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pennyroyal
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PostSubject: Re: Penny Diagnosed 2009   Mon Oct 15, 2012 9:44 pm

Hi Penny,

I too am allergic to Diamox but there are lots of other options. I am also not allowed to take furoesmide (lasix) which I know a lot of people have success with. I take topamax which has been great for the pain and reducing the pressure. Unfortunately for me it does make me very weepy and moody. However I am living with the side effects because it seems to work and keep me functioning. I have also had great success with steroids although they won't allow those for anything but short term use. What I'm trying to say is that there are lots of other options - just because the Diamox doesn't work don't let them give up on you. I'm sure other people will give you other meds that have worked for them too - I'm sure my list is a just a small amount of whats out there.

As for the pressure, My LP's have had opening pressures anywhere from late 20's to early 40's. I think everyone is different and everyone's 'normal' pressure is different. 24 might be really high for you if your 'normal' pressure is much lower than that. That's how my neurologist explained it to me anyway.

Hope this helps Smile
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medmisfit
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PostSubject: Re: Penny Diagnosed 2009   Tue Oct 16, 2012 10:03 pm

I agree! My original opening pressure was only 20, but my headache and symptoms completely went away after they drained off fluid..that's how I ended up being diagnosed. I tolerated Diamox the first time I had an issue w/ IIH, but not the second time. And, the second time my pressure was so high they were unable to measure it..it constantly fluctuates. I wonder if the neuro-ophthalmologist would be able to help..have you had your vision tested since the headaches returned? If your vision has been affected, then they may be more willing to treat you. Like Penny said, there are a lot of options out there. Otherwise, you might try a second opinion..maybe they'll actually hear you! Keep a symptom log, so you have documentation and can keep everything straight. Let us know how it goes!

Take care,
hug
julie
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