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 Our daughters IIH story

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Paul Rabe

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PostSubject: Our daughters IIH story   Mon Feb 02, 2015 7:36 pm

Hello.
We are from South Africa and are so glad to have found this site.
Our daughter had been suffering with intense migraine like headaches for the better part of 7 months and was treated for all kinds of things with no results or relief from the pain. She had gone through all kinds of tests (blood, x rays, MRI, ECG etc.) for everything under the sun with nothing testing as positive. After 7 long months a friend told us about IIH and the symptoms. When we discussed this option with 2 Neurologists, they both told us that they did not believe it was as she did not fit the IIH profile and that their diagnosis was more likely "transformed migraine".
Our daughter is 15 years old and is not overweight and the MRI showed no sign of Ocular nerve pressure or any other indicators of IIH.
1 month and many pills later we eventually managed to get the Neurologist to perform an LP on the 26th of January and he was astounded to find her CSF opening pressure to be 26. The spinal fluids tested clear with no abnormalities or viruses present.
Based on his findings from the LP he finally diagnosed her with IIH and has put her onto 250mg Azomid, 25mg of Trepiline and 50mg of Topalex per day.
Our daughter is still in a lot of pain with headaches and inflamed back muscles. The LP did not relieve the headaches immediately as our daughter went straight into a low pressure headache and had to be treated with steroids.
Doctors and neurologists here seem to have little understanding of IIH and offer no form of support besides a few pills that may possibly help.
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medmisfit
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PostSubject: Re: Our daughters IIH story   Mon Feb 02, 2015 8:44 pm

Hi Paul, welcome to the group! I'm afraid not many doctors anywhere have much information on IIH. It's a rare disease that isn't a threat to life, so very little research has been done. That's why these forums are so important. I know we have other parents as members, so hopefully you'll find some support and guidance.

I'm so sorry to hear your daughter didn't get any relief from the spinal tap. I hope the medication will help keep pressure down, so she can find some comfort once she recovers from the procedure. It sounds like they've done the typical testing and medication is actually the best case scenario, if it works. There are procedures and implants that can help, but hopefully she can manage her symptoms with medications.

Please look through the site and let us know if you have any questions.
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paula71
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PostSubject: Re: Our daughters IIH story   Sat Feb 07, 2015 1:25 pm

Hi Paul
I am also from South Africa and have found the same frustrations that you have, with my daughter, many doctors here are oblivious to what IIH is and so don't really know how to treat. If you search hard enough you will find a doctor that will listen or at least who is willing to do some research like my daughters doctor did. After almost two years of medication and 10 lumbar puncturers later she got a shunt she  is doing well and is finally pain free.

Wishing you the best
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Paul Rabe

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PostSubject: Re: Our daughters IIH story   Sat Feb 07, 2015 5:07 pm

Hi, thanks so much for the replies.
Glad to hear that your daughter is doing so much better after the shunt.
We have now spoken to a another neurologist who wants to do vitamin D and vitamin B tests and put our daughter onto Cortisone treatment via an IV line. This is the first time I have heard a mention of Cortisone and I do not know if this is normal treatment. I will look into it before I agree to this "trial treatment"
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Heidi
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PostSubject: Re: Our daughters IIH story   Sat Apr 25, 2015 10:06 am

Hi vitamin D is a problem for IIHers despite our needing it to keep our bones strong. It's good the doctor is being thorough. Years ago when I was 24 I was put on hydrocortisone as tests showed my cortisol level was low. Cortisone suppresses the immune system,  reduces inflammation, associated pain and swelling, which could be the reason for this option. I'll have a look for some more information for you. Hopefully there may be other members who have been treated with cortisone.
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Nami81

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PostSubject: Re: Our daughters IIH story   Wed Sep 21, 2016 10:53 pm

I'm also from South Africa and I was surprised when the first neurologist I saw immediately knew what the problem was. It took me 2 years to finally find this doctor. My GP and other doctors treated me like there was nothing really wrong with me and I was just complaining needlesly. I know this post is from a year ago, hopefully your daughter is doing well.
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