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 NOT iih, so what now?? thoughts please

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becky1966
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PostSubject: NOT iih, so what now?? thoughts please   Sun Aug 10, 2014 2:56 pm

Hi all. I was hoping to get a formal diagnosis before I become more involved in the website but have just been told I dont have iih, despite many health professional first thoughts.

So I’m here feeling as if I’m back to square one really, and looking for opinions, thoughts etc.

My story:

? TIA Feb 2014, within days – tinnitus, ringing in left, pulsatile whooshing when bending over. Ongoing cognition difficulties, disequilibrium, taking steroids for stiff ankle.

Easter 2014, finished steroids after long tapering, intense headaches, worse on waking and after lying down, morning nausea and sometimes vomiting

June 2014, optician reports blurry optic discs and asks me if diagnosed with ME or MS (I havent)

Seen several times by GP, seen neurologist – had loads of tests for lyme, lupus etc all ok except ESR which was raised

 Almost daily headaches. Given amitriptyline – headache no longer wakes me in night. No sleep apnoea.

Last week had lumbar puncture – opening pressure 17, closing pressure 13 told by registrar defiantly NOT  iih.

So, any thoughts? not currently working, as still have daily (morning worse) headaches, nausea, trouble multi-tasking, tinnitus. Do not feel particularly stressed or depressed. Am having some low pressure headaches which are relieved by lying down.

Any thoughts would be most appreciated xx  thank you 
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Sophiasmom
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PostSubject: Re: NOT iih, so what now?? thoughts please   Tue Aug 12, 2014 5:35 am

I'm so sorry for all your troubles.  I have some questions:

what position were you in for the LP?  if you were on your stomach, ask them if they added the length of the needle.  if not, then your ICP was actually 6cm higher.

there are people with papilledema at low pressures.  there are people who have symptoms at lower pressures who get better with reducing the pressure.  how did you feel after the LP, compared to before?

were you ever seen by an ophthalmologist to evaluate the blurry discs?  do you have papilledema or not, and if so, how is this being treated?

I got sick not long after a long steroid taper, also.

I assume you had a brain MRI for the ?TIA episode and it was negative?
did they work you up for a hypercoagulability problem?

welcome to our site.  I know others will be along shortly to greet you and lend their support also.
Deb
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becky1966
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PostSubject: Re: NOT iih, so what now?? thoughts please   Tue Aug 12, 2014 2:24 pm

Hi Deb and thanks for replying
I had my LP while lying on my left side and was told the measure went to 17, don't think needle length was added.
Immediately after LP felt considerably better and skipped out full of the joys of spring. Now 6 days later the achy headache is back same as before.
Never seen an ophthalmologist,  just GP, neurologist and optician and hence no treatment.
MRI & CT clear, MRV showed significant narrowing in one vein but was deemed by specialist not to be relevant.
All blood work and clotting ok apart from raised esr levels

Thanks again Deb
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Sophiasmom
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PostSubject: Re: NOT iih, so what now?? thoughts please   Tue Aug 12, 2014 5:57 pm

I think you need to see a neuro-ophthalmologist.  I think you have IIH, given your response to the LP.
read this paper: [You must be registered and logged in to see this link.]
I don't know what the thought process is at Johns Hopkins for the lower pressures, but I would want one of their docs to look at that MRV.  I would find a center that does stenting, and get a second opinion.  another option would be to have 24 hour invasive ICP monitoring in the hospital to see what your ICP does over a longer period of time.  the highest spikes seem to be during NREM sleep.
we are supposed to say consult with your doctor about the best course but I'm not sure your docs would make the right decision here as they are looking at the number and writing you off.  it doesn't sound like it is that simple in your case.  hopefully others will chime in with some additional thoughts.
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becky1966
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PostSubject: Re: NOT iih, so what now?? thoughts please   Wed Aug 13, 2014 12:50 pm

Today I have spoken to my own GP who believes that it is quite possible to have IIH without a raised LP pressure. I have tried to contact my neurologist asking her to see me again asap and I intend to push for meds/neuro-ophthalmologist/2nd opinion on the mrv. I'm in the UK so not sure how viable it is to contact John Hopkins. Thanks for info re pressure while asleep - it all makes sense now as to why my head and nausea are so much worse in the am and the LP was done at 16.00pm.

Thanks
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medmisfit
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PostSubject: Re: NOT iih, so what now?? thoughts please   Wed Aug 13, 2014 4:10 pm

Hi Becky! I agree with Deb. They confirm IIH by the way you respond to LP, so symptoms improving suggests that you do have IIH. Everyone's "normal" varies, so the numbers are really a guide. I'm sorry it's been such a roller coaster and ordeal for you, but I would continue to call and schedule 2nd opinions until you find someone that's listening.

If you're going to contact the neurologist again, I would be sure to tell her how much better you felt after LP. My numbers were also lower at diagnosis, but my symptoms went away after LP. My neuro- ophthalmologist treated me until meds stopped working and we were able to find surgeon that agreed with diagnosis. Vision loss is a concern with IIH, so do make sure they at least give you the neuro- ophthalmologist referral asap.

Take care,
Julie
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lisap

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PostSubject: Re: NOT iih, so what now?? thoughts please   Wed Aug 13, 2014 8:42 pm

Hi Becky not sure i can add anything that hasn't been said to me with my somewhat limited knowledge you sound like you do have iih the diagnosis can take a long time i am still struggling with diagnosis well after year .I too am in uk and have been met with wall of ignorance just persevere is all i can say and the people and support on here with their combined knowledge is amazing. All the best Lisa
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