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 Jynda diagnosed in Dec 2015

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Lyndaz
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PostSubject: Jynda diagnosed in Dec 2015   Tue May 03, 2016 1:46 am

I was diagnosed in Dec 2015.  Prior to this I had no issues or symptoms, I woke one morning with a headache which after 4 days started to affect my vision, I visited my GP who treated me for a migraine, I went back to my GP twice before a friend took me to the emergency department when I lost my vision completely for 5 minutes and was in so much pain it hurt to breathe, once in the emergency department I was told by the doctor to take Panadol for my migraine and to go and see an optometrist for my vision issues, I went to the optometrist who promptly sent me back to the hospital with a letter for the doctors saying I needed to be seen immediately as my optic nerve was swollen and bulging. I was then sent for a CT which showed the swelling and fluid, and this is when I was first told that they thought I had IIH, upon admission to hospital I was given a LP and my pressure was through the roof, I recall the doctors talking to each other and saying that it was three times what it should have been for diagnosis. Since then I have lost all of my peripheral vision and 8 weeks ago I had a VP shunt inserted, since the shunt was put in I am no longer taking the Diamox however I am still suffering from headaches and vision loss and a recent vision field test showed my centre vision is now starting to deteriorate. I am also waitlisted to receive a gastric band operation sometime in the next 3-6 months.  So glad to have found this forum as there appears to be very little know by the doctors and specialists I have seen about this illness, although they have told me that it is rare illness and I am more rare as my progression was very fast, I am a 5 hour drive away from the specialists who are looking after me and often feel that I don't really know what is happening to me anymore as things have happened so fast.  I try to remain positive and hope every morning when I wake up that I will be able to see properly again and in the meantime try to make the best of my current situation.
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Sophiasmom
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PostSubject: Re: Jynda diagnosed in Dec 2015   Tue May 03, 2016 6:22 am

hi, welcome to the site.  I'm so sorry about this new diagnosis and about how rapidly your case progressed.  I hope that the gastric band and weight loss can help.  if you still have vision issues what do they think about ONSF on top of the shunt?  I don't know how docs are trained in NZ but in the US we were taught to always look at the optic nerves when a patient is complaining of a headache.   if your GP or the ER doc had done that, your diagnosis would not have been delayed.  it sounds like maybe you need more of a workup to make sure they have ruled out all possible secondary causes.  are you seeing a neuro-ophthalmologist?
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medmisfit
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PostSubject: Re: Jynda diagnosed in Dec 2015   Tue May 03, 2016 3:10 pm

I agree with Deb..it sounds like further testing is in order. IIH can be secondary to many disorders and diseases, so I would continue to advocate for further testing or evaluation by neuro-ophthalmologist.

I also know that we have some members that still take medication in addition to the shunt, so it may just be that you need the additional assistance. IHRF (www.ihrfoundation.org) does research and has helped some of our members, so you may also want to contact them for suggestions.

I hope you find some relief soon! Keep us posted..

Julie
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Lyndaz
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PostSubject: Re: Jynda diagnosed in Dec 2015   Wed May 04, 2016 4:24 am

Thank you for your replies, yes I am seeing a neuro-ophthalmologist however it is a five hour drive and I am currently unable to drive due to my vision so I am now only seeing her once every three months, I did make contact with her nurse last week when I noticed my vision was deteriorating further but she said that whilst my visual fields showed the deterioration to my centre vision she didn't want to see me until my next booked appointment in july.  I am due to see the neuro surgeon in a few weeks so will ask about further testing and will make contact with the ihr foundation, all that I know about this illness is what i have learnt myself by research, my local GP had never had a patient present with iih in all her years as a GP, not really sure where I stand currently but I have decided to keep a journal of when I get headaches or am feeling dizzy or have nausea so I can talk to the neuro surgeon about it when I see him
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Sophiasmom
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PostSubject: Re: Jynda diagnosed in Dec 2015   Wed May 04, 2016 6:18 am

definitely keep a journal with your symptoms and anything that goes on, diet, changes in meds, etc.  there are many triggers we find out for our ICP going up, so the journal will help you discover yours.  I used mine to determine that how well I treated my sleep apnea was a huge factor.  it helped me make the decision to have jaw surgery, and that put me into remission.
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medmisfit
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PostSubject: Re: Jynda diagnosed in Dec 2015   Wed May 04, 2016 2:37 pm

It does seem like you're on the right path, so hang in there and let us know if you have any further questions or concerns.

You may also check out http://www.ihaveiih.com/f44-useful-guides-and-printouts section to review tips on talking to your surgeon, keeping a journal, etc.
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Heidi
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PostSubject: Re: Jynda diagnosed in Dec 2015   Fri May 06, 2016 8:29 pm

Hi Lynda, welcome to the support forums. I don't think I can say anything different to Deb and Julie, but I hope that your vision will improve after further treatment. I too have no peripheral vision and it's been 15 years now. I have managed to adapt thanks to some wonderful sight organisations, so I would recommend that you contact the ones in your area. They can help you with daily living and things which will make a huge difference to you and your confidence.
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