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 Leslie from Alabama

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PostSubject: Leslie from Alabama   Tue Feb 26, 2013 6:19 am

Well, hello! I'm Leslie from the Gulf coast of Alabama. I'm in the process of being diagnosed with IIH and I'm so glad I found this group! Very Happy

I'm a 43 y/o married mother of a 19 year old. I've had really bad headaches for years with sporadic dizziness...which had been diagnosed as Migraine Associated Vertigo and Chronic Migraine. Treated successfully with a combination of maintenance meds since 2005. (Toprol XL and Amitriptyline.)

My husband retired from the military last year and we've moved from VA and to AL. Unfortunately, my headaches and dizzy spells been getting worse over the past four months which prompted me to start making new doctor appts in the new place we live.

The first time I head IIH was a few weeks ago, I went to an ophthalmologist since I knew it had been years since I'd been and my 20/20 vision was starting to get worse. I couldn't get a cheap dime store set of reading glasses to help my vision...that what's really led me to the eye doc. ;-) ...Well, the opthalmolgist spotted a papilledema and sent me to a neuro. The neuro saw the spot, explained what IIH was, and scheduled me for an MRI and a LP. The MRI came back fine. It took a couple of weeks to get an appt. for the LP. To be honest, I almost cancelled my LP at the last min. bc (ironically) at the time, I was having some good days and hadn't felt that good in months, but the nurse assured me that I still needed to have my pressure checked. ...Regardless of having some good days where I felt great and was functioning normally!

During my lp, the radiologist said my pressure was normal. He drained some for testing (?) and sent me on my way. The second I started to lay on my back for the 4 hour wait after the lp, I got the most horrible dizzy spell. The next day I got the dreaded lp headache and stayed incredibly dizzy. ...Needless to say, 12 days later (today) I finally feel better. Got dressed, took a shower and left my house! Yay, me! (It is the little things that really matter sometimes, isn't it?)

So, now I'm just waiting for the appt with my neuro. He said he'd "seen worse cases" of PTC/IIH and that he was sure with weight loss and diamoxx, I'd be fine. After doing a lot more research, I hope he's right, but I know that this is just the beginning of my journey.

Can I have a normal opening pressure, have a papilledema, get headaches/dizziness/neckpain/etc and NOT have IIH?
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PostSubject: Re: Leslie from Alabama   Tue Feb 26, 2013 6:36 am

hi Leslie;
welcome to the forum. there is lots of good info and always good support here. what was your pressure exactly? I am always suspicious about what some docs think is "normal". and did your doc know how long you had to stay in bed after the tap? I wonder if you had a CSF leak that healed up on it's own finally.

I hope you are liking being on the coast there. I had to live in Alabama, in the Montgomery area, thanks to the military, for 3 yrs. I did not like it at all. the coast must be better. I was definitely NOT impressed with the medical care in Alabama, I must say. so if you don't get proper treatment; don't get better, then I would not hesitate to go out of state for a second opinion. I think there is a Mayo in Florida. if you have family back in VA, go back up to that area and go to the IIH clinic at Johns Hopkins; they are supposed to be the best.

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PostSubject: Re: Leslie from Alabama   Fri Mar 01, 2013 3:13 pm

Hi Leslie, welcome to the group!!! I'm glad you're being tested and having issues addressed, but opening pressures are very subjective..everyone seems to have a different "normal" and that's constantly changing too. Usually people w/ IIH find relief following LP, but you probably wouldn't have noticed w/ if you were having low pressure symptoms. I recommend keeping a symptom log..there are examples in Useful Guides and Print Outs section. There are also informational print outs on how to talk to your doctor about IIH, so maybe helpful to view prior to your appointment. Take a look around the site and feel free to post or contact any of the Moderators or Admin w/ any questions.

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PostSubject: Re: Leslie from Alabama   Sat Mar 02, 2013 1:13 am

Hello Leslie and Welcome3

Sounds like they didn't have you lay flat immediately after having the lp done. My Doc insists that they take us directly from the CT Scan to recovery where we stay flat for a min. of 45 minutes. Helps in avoiding the low pressure headache.

I have to agree with Deb on seeing someone more in tune with IIH. You need someone on your side, not someone who dismisses you with the wave of a hand.

I hope you are feeling better by now.
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Leslie from Alabama

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