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 Introduction - Hi!

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traceyp1977

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PostSubject: Introduction - Hi!   Thu Mar 15, 2018 11:34 pm

Good evening all

I am Tracey and I am in the UK. I was diagnosed on Monday after a week's stay in the hospital. I am sure many won't be surprised this hasn't been a quick journey, in fact 3 years since it first came up as possible.

My MRI apparently was enough to diagnose, I have in the past had an LP of 25 whilst on Diamox. But was dismissed. They are going to rerun the LP but they have already diagnosed me.

My symptoms are: 
Pappiledema - left eye is mild, right eye is very swollen, with swollen optic disc veins which are grossly swollen and twisty.
Vision loss - both eyes worse in the right.
Headache
Pulsatile tinnitus
Tinnitus
Nausea
Dizziness
High blood pressure (175/118)
Random symptoms to discuss with my neurologist are:
Detached feeling
Pressure in the ears
Swollen fingers

I wondered if anyone else has those random symptoms.

Thank you for having me Smile 

thank you


Diagnosed with IIH 12th March 2018  fingers crossed
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Sophiasmom
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PostSubject: Re: Introduction - Hi!   Mon Mar 19, 2018 1:05 am

hi, yes those are all symptoms of IIH.  I have not had visual issues for the most part.  the detached feeling is what I would describe as brain fog.  it can feel as bad as trying to wake up from general anesthesia.  my blood pressure hasn't gotten that high, but I spike with my sensory problems when overwhelmed.  others have described the ear pressure feeling.  I feel it in my nose.  my ICP goes up from chemical exposures, and the first sensation is pressure behind my nose and then behind my eyes, as the ICP goes up.  77% of women with IIH can have peripheral edema.  you probably have swelling of your ankles if your fingers are swollen.  sorry you are joining our ranks.  I hope that now that you have a diagnosis that you can get better treatment.
Deb
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traceyp1977

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PostSubject: Re: Introduction - Hi!   Thu Mar 22, 2018 9:54 pm

@Sophiasmom wrote:
hi, yes those are all symptoms of IIH.  I have not had visual issues for the most part.  the detached feeling is what I would describe as brain fog.  it can feel as bad as trying to wake up from general anesthesia.  my blood pressure hasn't gotten that high, but I spike with my sensory problems when overwhelmed.  others have described the ear pressure feeling.  I feel it in my nose.  my ICP goes up from chemical exposures, and the first sensation is pressure behind my nose and then behind my eyes, as the ICP goes up.  77% of women with IIH can have peripheral edema.  you probably have swelling of your ankles if your fingers are swollen.  sorry you are joining our ranks.  I hope that now that you have a diagnosis that you can get better treatment.
Deb
Hi there,

Thank you for your message. I am sorry for taking so long to replied, I was readmitted to hospital. You are really on the nail with your reply and get me completely. I do actually have peripheral edema in my leg and ankle (I only have one leg). I thank you for taking the time to comment. 

Tracey


Diagnosed with IIH 12th March 2018  fingers crossed
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Sophiasmom
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PostSubject: Re: Introduction - Hi!   Thu Mar 22, 2018 10:28 pm

are you chemically sensitive as well?  most people with IIH seem to be if you question them specifically, although most don't define themselves that way.  I hope you are OK in regards to the hospital admission.
Deb
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traceyp1977

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PostSubject: Re: Introduction - Hi!   Thu Mar 22, 2018 11:00 pm

I have not really thought about it, I don't think I am. 
I am feeling so much better than I was thank you, they have me on heavy duty pain meds to control the headaches.
I wondered if you get a feeling of ants crawling all over your scalp and in your ear. It is worse when the pressure is high. It feels so bizarre and it itches.

Tracey


Diagnosed with IIH 12th March 2018  fingers crossed
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Sophiasmom
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PostSubject: Re: Introduction - Hi!   Tue Mar 27, 2018 2:16 am

not really.  lately I keep thinking I feel something crawling on my head, just one spot at a time, but I've only noticed it since my daughter had lice....  I don't think it's related to IIH.
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medmisfit
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PostSubject: Re: Introduction - Hi!   Tue Mar 27, 2018 2:07 pm

I do get numbness and tingling in my head when pressure is higher, but I wouldn't describe it as anything crawling. I wonder if that is more a symptom of your medication. You may want to check side effects and talk to the pharmacist or physician that prescribe them if it doesn't seem to go away.
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