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 Karen diagnosed 2011

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ldan1288

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PostSubject: Karen diagnosed 2011   Tue Oct 09, 2012 9:28 pm

HI All

I was diagnosed as having IIH a year ago and am still confused! I had 2 LPs last year and have been on Diamox ever since. My Consultant is now trynig to wean me off them as there is "no swelling on my optic nerve" and she is not concerned.

However, despite asking her a few times what I am supposed to expect from this and also asking my GP and Neurologist the same question, I am still no further forward. I feel really quite alone and isolated as everyone thinks I should be ok cos the doctors are telling me I'm fine but I certainly don't feel it.

I still regularly have headaches although not as severe as the one last year when I had the LPs. but I can be fine one minute and have a headache the next. I get dizzy, have the whooshing, my head feels so heavy, the sunlight hurts my eyes so regularly wear sunglasses.

I also have an underactive thyroid and PCOS and have recently had blood tests which showed I am anaemic too. Im so tired but when i say tired I mean exhausted like I'm carrying lead weights. I could just :( , if it didn't hurt my head so much!

Whilst I realise from reading other posts that I have got off lightly in terms of LPs and shunts, etc,and feel very lucky in that respect, is it normal to have all these symptoms? Can you still feel like this even when the docs are telling you your pressure is fine? Is this still IIH or am I looking at something else.

I've had to take a couple of days off work for the first time in a year as I feel so tired and low. I don't really have anyone else to talk to about this so apologies for moaning but I don't know where else to go.

Any advice/answers would be most appreciated.

Thanks

Karen x
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Sophiasmom
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PostSubject: Re: Karen diagnosed 2011   Wed Oct 10, 2012 12:33 am

hi Karen;
I don't have papilledema and I am disabled by my illness, I have all the symptoms you describe. I think your docs are idiots for thinking you can stop treatment. maybe you need more treatment? OK, so they are controllling your pap, but have they never heard of IIHWOP? look it up on Pubmed and print out some abstracts to show them. yes, your symptoms sound like they are still from IIH. sorry...... I think probably the difference is in how high the pressure is and what your anatomy is like, how the pressure is transmitted to the eye. my ophthalmologist thinks my bulging eyes are from Graves and not my IIH, but I am suspicious it's just a result of how the pressure is transmitted.
hang in there! be persistent with your docs, you still have this and they cannot ignore it.
Deb
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DMajorly
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PostSubject: Re: Karen diagnosed 2011   Wed Oct 10, 2012 2:07 am

Yes. I think they are idiots also... I'm sorry ;( I think they need to go off how u feel. Have you had another LP lately? I don't have palp either but I still have vision disturbances. My neuro surgeon is still concerned about my vision and I have to get a stent and or a shunt placed soon. Everyone is different but I can say that I have had to literally fight for my care and call and complian when I still didn't feel good. Not that I am doing much better yet but I did finally see a surgeon and he gave me some hope. Its horrible to have to fight your way into getting helped but its your pain... and your life. At the end of the day its about you getting the help you need. I'm confused as to why they would stop your meds if your still having symptoms arrrgg ;( don't give up! And vent to me anytime. Its hard people just don't get it sometimes.
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Wylee
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PostSubject: Re: Karen diagnosed 2011   Wed Oct 10, 2012 5:31 am

Hello Karen and welcome to the forum.
It sounds as though the Diamox has been working well for you by reducing your symptoms. Since you still do have some symptoms, you may want to discuss with your docs trying to slowly lower the dose and see what happens. I would not want to come off the meds completely because it sounds like you will be back to square one. You may indeed be one of the lucky ones that medication alone will be all that you need to be able to live a more normal life.
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ldan1288

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PostSubject: Re: Karen diagnosed 2011   Wed Oct 10, 2012 8:43 am

Thanks everyone. I was starting to think I was just being a hypochondriac. Its a relief to know that I'm not going mad. I will be contacting my doctor again today to try and make them listen to me and not fob me off.

Its really nice to find people to talk to who understand. I think i will be back on the forum more regularly. This has really helped.

Thanks again

x
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Wylee
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PostSubject: Re: Karen diagnosed 2011   Fri Oct 12, 2012 3:51 am

Please feel free to drop by any time. We often get some of our best ideas from what others have tried.

I find it very interesting that in addition to the PCOS, which already does have a strong connection to IIH, that thyroid issues seems to be a bit more common than I would like to see.

My docs just checked me for thyroid. Mine was "normal." Feeling very lucky on that one.

Karen, see if you can have a good talk with your doc. Let him/her know about your concerns, and the fact that you do still have some symptoms, they are just not as bad as they were. We need to keep those symptoms from getting any worse!!

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