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 Steph - diagnosed june 2013

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Medea
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PostSubject: Steph - diagnosed june 2013   Mon Oct 07, 2013 11:29 pm

Hi, I'm Steph. I'm a mother of 1, from  Scotland. I'm a costumer & wardrobe mistress currently studying towards an M.A. in costume for performance.

I was diagnosed with IIH in June because I was a wee bit worried about my eyesight so I booked a supplementary eye test & suddenly found myself whisked off to hospital to get a lumber puncture! I've had an MRI & all sorts of people staring at the back of my eyes since then

I'm not on any medication as of yet, even though I've had to had another 2 lumber punctures since then and am now suffering from involuntary tremors as well as the sickness & headaches.

It's really hard to loose weight when all you want to do is sleep or throw up!

Really need to phone up my neurologist to find out what is going on because I'm not meant to see him again until... NEXT JUNE! I did have an appointment for march, but it got cancelled.

The tremors are driving me loopy because I cant thread a needle or cut anything out neatly, which is a draw back in my career lol.

I'm also bi-polar, so on sertraline for that. I was rather concerned that it was the root cause of my IIH but every doc I mention that to dismisses it.
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Wylee
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PostSubject: Re: Steph - diagnosed june 2013   Tue Oct 08, 2013 3:54 am

Hi Steph, and welcome to the forum.
I am surprised that you are not on any meds.  Diamox (Acetazolemide) is the usual first one used.  If the docs think you need to lose weight (a common misconception), Topamax is often prescribed.  Doing a lp will lower the pressure, briefly.  If you feel better after having a lp, assuming they draw off fluid during the procedure, then the diagnosis of IIH may be correct.  
Saving your eyesight must be your number one priority.  Keep after your eye doc to watch for signs of swelling of the optic nerve disc (pailloedema).  Even March is too long to wait.  You need a doctor you can see regularly and well before June!

BTW, sometimes the docs don't ever come up with a reason for the IIH. :roll:  But, let's hope they will be able to treat yours and get it under control.
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Medea
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PostSubject: Re: Steph - diagnosed june 2013   Tue Oct 08, 2013 5:25 pm

Just got off the phone with my neurologist. I'm to go in to see him tomorrow for yet another LP.. and hopefully to get put on medication.
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Wylee
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PostSubject: Re: Steph - diagnosed june 2013   Tue Oct 08, 2013 5:53 pm

Excellent!  Be sure to ask the doc to tell you the opening and closing pressures.  After the lp, lay flat for a good 45 minutes to one hour to avoid a low pressure headache.

Good luck.
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medmisfit
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PostSubject: Re: Steph - diagnosed june 2013   Tue Oct 08, 2013 6:43 pm

Hi Steph, welcome to the group! I'm glad you were able to reach your neurologist and get LP scheduled for some relief, but Linda is right..you really need meds to manage IIH on ongoing basis. They may be worried about med interactions, but there are several options out there now. Check out the Useful Guides and Print Outs section for ideas on how to talk to your doctor. There's actually a lot of good information in that section, so take a look when you get a chance.

Good luck tomorrow, and let us know what happens!
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Medea
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PostSubject: Re: Steph - diagnosed june 2013   Wed Oct 09, 2013 6:24 pm

Back from neurologist. There where no beds to give me a lumber puncture today BUT I have been prescribed Diamox (125mg twice a day for 2 weeks, then 250mg twice a day after).

They are going to phone me tomorrow to schedule the LP and if not, I am to phone on Friday.
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medmisfit
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PostSubject: Re: Steph - diagnosed june 2013   Thu Oct 10, 2013 2:42 pm

That's good..at least you're moving forward! I hope the Diamox gives you some relief..keep us posted, and take care.

hug
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Medea
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PostSubject: Re: Steph - diagnosed june 2013   Fri Oct 11, 2013 6:32 pm

Pressure was 32, so not as bad as last time. having a weird tingly sensation in my tongue & lips though.. I assume that the combined effects of the Diamox and the LP.
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medmisfit
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PostSubject: Re: Steph - diagnosed june 2013   Tue Oct 15, 2013 5:53 pm

Diamox does cause tingling, so I would just keep an eye on it and call doctor if becomes unbearable. Some members find they get used to side effects over time, some do not. I would suggest keeping a symptom log to help you track changes..it gives doctors more info and helps you keep things straight.
Hope you're feeling better soon!
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Heidi
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PostSubject: Re: Steph - diagnosed june 2013   Fri Oct 18, 2013 3:33 pm

Hi Steph and welcome to the group forums. I'm sorry for the late reply my computer is away bring fixed, and it's a struggle on my phone, which is my only internet source. I'm pleased you have been put on the right path with treatment, and I'm sure you're noticing the side effects of the Diamox already. There is information, and a full list of the side effects in the medication section. 

We have lots of information for you to look at, and if there is anything you want to know, but can't find, please ask any of the team, they're here to help you.
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