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 When do I worry?

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Laliberte
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PostSubject: When do I worry?   Mon Jul 18, 2016 8:36 am

That is my only question since I was diagnosed a little over a year ago. I was on diamox since I got out of the hospital after the spinal tap and blood patch, and was checked on regularily by my opthomologist (bless her,seriously), two months ago I had gotten refferred to a neurologist and he told me to switch my perscription to help with my daily migraines, my opthomologist agreed so I went with it. (Perscription was Topiramate) after only two days of being on those I got taken off because my headaches were 10x worse, making me miss work and not being able to get up. Called my drs just to ask what I do now for prescriptions because they only phoned me to tell me to stop taking it immediately. Three weeks went by and I was on No
Perscription. Symptoms started coming back, stiff neck,ringing it ears, had one brief few minutes of double vision etc. Went to optho and she said my levels and stuff are fine. (I know this is poorly written my memory and train of thought has never gone back to normal) so, my question is, if I feel those symptoms, when do I worry?  How do I know if it's time to call my doctors, or time to leave work you know? I'm 20, live by myself, and I've been scared for a year.
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Sophiasmom
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PostSubject: Re: When do I worry?   Tue Jul 19, 2016 5:29 am

wow, so you were doing fine and they decided to try to fix what was not broken??    I'm quite sure you ought to go back on the Diamox.  I would call the doc and say you feel ill and need to go back on it, and don't take no for an answer.  you can have IIH without papilledema, and currently that appears to be your situation.  it may just be a matter of time before the pap comes back, so what are they waiting for?  for you to lose your peripheral vision and your job?  I would be about to complain to the medical board about what they did.  the other thing is that if you were still having headaches, your IIH was not fully treated anyway.  so then they stop your med?  I absolutely don't buy that you have migraines too.  the only way to rule out IIH is with an LP, the headaches can mimic migraine.  you have had an LP and you have IIH.  so if they want to say you have migraine now, they need to prove that you don't get better after your ICP is reduced at LP, and that your ICP is no longer elevated.  I would go back to that neurologist and demand the Diamox, and if he won't deal with it then find another neurologist.  I'm so sorry for what you are going through.
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medmisfit
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PostSubject: Re: When do I worry?   Tue Jul 26, 2016 8:09 pm

Any progress? They tried to tell me that I had migraines at one point, but I kept telling them it felt the same as low pressure after LP. They'd do LP and get "normal" opening pressure numbers, so tell me it's a migraine. Eventhough, I'd have to lay flat a week or more following the LP because I couldn't move without extreme pangs of pain and symptoms would completely go away when I laid down..duh!

They made me try EVERY medication, narcotic, botox, and eventually sent me to a pain specialist because none of them did anything but make me sick. HE is the one that told me that my opening pressures were irrelevant because pressure fluctuates especially with position and sent me to Headache Clinic for evaluation. Not the neurologist, not the neuro-surgeon, the PAIN SPECIALIST. They agreed and sent me to neurosurgeon at Cleveland Clinic, who confirmed BY MY SYMPTOMS that my shunt was overdraining and I had low pressure headaches. He also said they haven't used LP for several years in instance of overdraining because it wasn't accurate..SEVERAL YEARS..ugh! I was scheduled for surgery and felt so much better that I was sitting up talking to staff in recovery.

My point is even most of the specialists have no idea, so just keep calling or scheduling with new "specialists" until someone hears you. Keep us posted!

I hope you find some relief soon!!!
Julie
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Laliberte
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PostSubject: Re: When do I worry?   Tue Aug 02, 2016 10:12 pm

Update: after I wrote here I called my opthomologist and told her secretary I hadn't been on any Meds for three weeks, got an appointment that day. I got put back on Diamox, my headaches relieved a little bit but my vision is still weird? Although I wouldn't say I have double vision, at first it almost looked like a glare, but say if I'm looking at a word I can see a little bit of the letter above the actual letters. I'm going in for a visual field this Friday. Having troubles concentrating quite a bit which I'll mention when I see her
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Laliberte
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PostSubject: Re: When do I worry?   Wed Aug 03, 2016 5:27 am

Also, I'm extremely frustrated because I know when my symptoms are there, even if they aren't super severe, like when I went in after three weeks of not being on any meds, I felt awful and so much pressure and everything but the opthomologist doesn't do anything because she can't see it in my optic nerves, even though she told me she wouldn't be able to see it until it is severe. So am I supposed to wait till my symptoms get so bad I'm in the hospital again for them to listen to me?
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PostSubject: Re: When do I worry?   Thu Aug 04, 2016 10:53 pm

That is frustrating! Your optic nerves do not have to be swollen to have IIH. Hopefully the Diamox will continue to help and at least saving your vision. You may just need a slight increase or something, but it does take time to adjust. I'm just glad to hear that they're doing something at this point. Let us know the outcome of Friday's appointment.
fingers crossed
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Laliberte
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PostSubject: Re: When do I worry?   Tue Aug 23, 2016 8:44 pm

So I went in  last week, optic nerves are not swollen but I have something called "shadowing" where I'm pretty much seeing double but it's very very faint and let's say I'm looking at a word, it's only half the word above the actually word. She told me it's because of the diamox but we have yet to discuss other options. Also had a visual field test and all he told me about that is that my left eye is worse than my right. Which I already knew, told him my left eye actually hurts for the most part but we didn't discuss anything else??? My eyes hurt so much in the mornings and I'm working a lot and I'm just sore :(
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PostSubject: Re: When do I worry?   Wed Aug 24, 2016 2:07 pm

I think you need to see a neuro ophthalmologist. I have never heard of Diamox causing visual problems, that would make it a problem to use it in IIH.  unfortunately the docs focus on the visual stuff and ignore the other symptoms, so an ophthalmologist might not be the best person to help with your symptoms that begin at pressures lower than that which cause visual stuff.  but you DO have visual stuff that it sounds like your ophtho is blowing off.  I'm so sorry.  you just have to keep going to new docs until you find one that will listen.  when I had eye pain, prednisone helped.  of course at the time they thought I had Graves ophthalmopathy because I was developing proptosis and had hyperthyroidism.  but I had all the IIH symptoms concurrent with the eye stuff and they missed it.  I missed it.  but if they thought it was IIH they wouldn't have given me prednisone, which I don't understand.  it's the only thing that really helped my IIH too.  I doubt your doc would give it to you for your symptoms/signs.  the only other thing that helped for that eye pain back then was something called Lyprinol.  I don't know if it would help you.
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PostSubject: Re: When do I worry?   Wed Aug 24, 2016 6:12 pm

Diamox has been known to cause visual changes, especially blurred vision. It's one of those things that doesn't happen to everyone, but can happen. I agree with Deb though, it sounds like you need a neuro-ophthalmologist. They are more equipped to deal with IIH and related conditions, so may be more aware of cause and effect. If you can't find one, try the 'Resources' section at IHRF ([You must be registered and logged in to see this link.] and at least find an ophthalmologist that may be more interested in your care.
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Laliberte
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PostSubject: Re: When do I worry?   Wed Aug 24, 2016 8:11 pm

Yes! She even told me we need to find an alternative medication but we need to find one that is not topiramate (I have already tried that and I reacted terribly) but we didn't talk any further about it. I always feel sort of brushed off. I told her about my headaches and how terribly my eyes hurt in the mornings and usually if it's that bad the headache doesn't go away and she said "that means it's hypertension but you have no swelling so we need to manage your headaches" which I know is wrong but I don't feel I have the right to say like, okay we need to figure this out now. I also stopped going to my neurologist because he basically blew me off when I couldn't get up off my couch due to the side effects of topiramate. I completely understand they are busy busy people but I'm so fed up
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medmisfit
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PostSubject: Re: When do I worry?   Thu Aug 25, 2016 6:21 pm

Unfortunately, many professionals see their time as more valuable, but we are actually paying them for their expertise and service. You have to be assertive without getting emotional because then they blame it on your hormones or mental health. It is frustrating, but definitely why it's important to keep looking until you find someone that hears you.

I would note the outcome of each appointment and write down any questions you have once you leave. You can always call them to follow up, but it doesn't seem like they're taking it seriously. At least have some reliable checking your vision. If you find a neuro-ophthalmologist, they can prescribe meds and monitor vision..it's a win-win ; )
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