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 mtforeman = diagnosed 1999

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PostSubject: mtforeman = diagnosed 1999   Tue Jun 29, 2010 2:28 am

Hi! I'm new to this group but not to IIH. I was first diagnosed with IIH around 9-11 years ago. I had it for a while (1-2 years) but not badly. My pressure was only around 28, and the only reason it was diagnosed was because I had a detached retina. The retinal specialist noticed the optic nerve specialist and referred me to another specialist. Interestingly enough, my symptons had been mainly headache to that point, and I think I may have had it a very long time, as I had had tinnitis since i was a child.

So...responded well to diamox, lost weight, and it went away....sort of. It went away well enough for me to go off the meds, but from that point on I could feel when it resurged...the extensive headaches and tinnitis...and I'd try to treat with careful diet that would reduce fluid pressure. It came and went. My experiences with LP had been horrific...to the point that I refused to see the doctor when it would come back.

Fast forward 7-8 years and it came back and back and back....far worse than it had ever gotten. I had to get over my LP phobia when my vision doubled so badly that I was completely incapacitated. I couldn't function at all unless I closed one eye. Saw a new opth and neuro. The opth was very aggressive (thank goodness), and the neuro was a little scary in that he had his info. all wrong, but at least the treatment he prescribed seemed accurate. More LP (now with fluro, which was a WHOLE new experience, and much better, pressure 48), meds, diet (literally, I ate maybe 300 cal a day for weeks), lost 55 lbs, and over a couple years it slowly improved until I went off the meds a couple weeks ago.

Scary thing is within going off the meds I gained 20 lbs...in 2.5 weeks! Symptoms are already returning. *sigh* Anyway, back to very strict diet (low carb, low sodium, low fat, low cal, low EVERYTHING) and I'm hoping to reign it back in.

So, it has been a long road for me. I have permanent vision loss, plus the loss from the retinal detachment, but overall one eye sees what the other eye does not, so it only really bothers me when I have to close one eye.

I'm married, work full-time, and have four kids. I'm also a full-time student, so I keep busy for sure. I'm happy to meet everyone and say HI!

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PostSubject: Re: mtforeman = diagnosed 1999   Tue Jun 29, 2010 9:16 pm

Hi and welcome to the group. I can see you've been on a bit of a rollercoaster ride. It must be so frustrating when you have done everything you can to lose weight, and to improve on your health with IIH, I know exactly how you feel I've been in a similar position. Have you ever been told what triggered your IIH at all, and could the weight you've gained possibly be down to fluid retention.

I know when I came off Diamox, I felt like I had a lazy bladder, because I hardly seemed to go to the toilet, and I was constantly swollen. In the end I was advised to have my stomach measured every morning and evening for about a week, and the results were that everyday I was gaining 11 cm a day. So I am now on diuretics to keep that from happening. I don't know if it was all the years on diamox, which caused this, but it might be worth talking to your doctor about it possibly being a fluid retention problem. It's definitely worth having it ruled out, as well as having your thyroid checked.

I too have permanent vision loss, and I think it's absolutely fabulous that you have continued to work, and study. I love that you have kept positive and confident throughout all this, and you are an inspiration to others that you can live with IIH, and still have a good life!hug
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PostSubject: Re: mtforeman = diagnosed 1999   Fri Jul 02, 2010 2:01 pm

Welcome to the forum, your story summed up the most common experiences of having IIH. The headaches and lumbar punctures are sometimes horrifying. It pays to find a good doctor that will help you design a treatment plan that will favorably work with you. Most doctors’ associate elevated IIH symptoms with increased weight however some also are of average weight still suffer IIH. We hope the progress in research would find out the root cause of IIH.

It seems for most of us IIH is here to stay. But let us keep optimistic that though it’s a tough uphill batter living with IIH. We can still find ways to live life as joyfully as we can be.

Cheers all,

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