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 Just Diagnosed

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ashl

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PostSubject: Just Diagnosed   Tue Sep 13, 2016 10:54 pm

First topic message reminder :

Hi everyone, my name is Ashley. I'm 27, Canadian, married, and I'm here to bum you out. 

Yesterday I was tentatively diagnosed with IIH. They'll be running more tests to confirm that it's not actually SIH but since I fit the general "criteria" (woman, child-bearing age, overweight, on birth control) the most likely scenario is that I've joined your club.

Two weeks ago I woke up with a horrible headache and a sore, stiff neck. I was sick the night before and was actually on (a terrible) vacation in an air-condition-less house so I chalked it up to pulling a neck muscle by sleeping poorly. I spent about three days sobbing like a baby and seriously contemplating suicide but then the symptoms began to dull. My grandmother died that Saturday, symptoms got worse for a bit, then again began to dull.

Exactly one week later I had a blind spot in my right eye. I panicked. I also have type 1 diabetes (aka juvenile diabetes) and thought I had damaged it with high blood sugars, despite mine being well-controlled. I went to the hospital and after seeing several opthamologists and going through several tests they could see nothing wrong - "perfectly healthy eyes". I was confused, but relieved. They scheduled a follow up for yesterday. 

Ah, yesterday. I went through more of the same and some new tests yesterday. The first doctor found a very small hemorrage on my left eye - the eye opposite that had the blind spot (which had not gone away, but gotten a bit worse the Friday before when I had to have my ferret put down and grieved terribly). She immediately called it diabetes-related and again, I panicked. A more senior doctor came in though and said that he could see minor swelling in my optic nerves. He called in a neuroopthamologist who confirmed, and I think (thought I'm not sure because they were speaking French and my French - especially medical French - is pretty rusty) they decided it was papilledema. 

The senior doctor then explained to me that, because of my stubborn headaches, continued neck stiffness, and occasional "whooshing" sound in my ears he was quite certain this was IIH. He didn't tell me much about it, just that I don't have to be scared (yeah right! easier said than done) and they are booking me consults with another neuroopthamologist and a neurologist. They did a CT scan and, as it was nearly 7pm and the clinics were shutting down, sent me home. 

Now I wait. I've been googling non-stop. I can't help it. I'm addicted. I'm terribly anxious, which is making the symptoms worse I think and makes it difficult to eat. I've already began a restrictive calorie diet. 

But I'm scared. I'm so, so scared. And I feel so alone. 

My husband and I wanted to start trying for a baby next year. That seems even scarier than it was before. 

I'm afraid to lose my sight. My livelihood depends on it, and I don't think I'm eligible for any kind of disability insurance because of my pre-existing condition. How can I assure my family is taken care of if something awful happens? 

I don't know what I'm asking for here. I'm just so scared and sad and maybe I'm being selfish and just looking for comfort from others who have been there before me. I feel hopeless right now and like I'm about to become a burden on my loved ones. I don't want that. I really don't.

Anyway, when I'm less blubbery I promise I'll make a better impression. Hi again, and thank you for letting me part of your forums  Smile
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Sophiasmom
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PostSubject: Re: Just Diagnosed   Mon Sep 26, 2016 3:16 pm

I've never heard of anyone having a problem with ONSF.

Nami, make sure you utilize FMLA for any time you need off.  this protects your job.
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Nami81




PostSubject: Re: Just Diagnosed   Mon Sep 26, 2016 3:25 pm

Hmm I'm not from US. We take out private life cover. Part of this is disability cover for known illnesses and conditions. With IIH I have to prove that the condition is having a severe impact on my functioning at work before I can be boarded. This means I get a portion of my salary while staying at home.

Sickleave at my job is 18 days per year, and if I take more leave its normal leave, and if all my normal leave is used I get unpaid leave. My boss is ok with everything, I'm just going to end up with a lot of unpaid leave. That is if I can still actually do my job. Its really hard to concentrate and Im an engineer.
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Sophiasmom
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PostSubject: Re: Just Diagnosed   Tue Sep 27, 2016 3:23 am

oh, I'm sorry.  where are you?

many of us are on disability because IIH does have a significant impact on our ability to function at work.  for me I was getting sick at work constantly because of chemical exposures that increased my ICP and other effects.  there is no work environment that is safe for me.  but I know many with IIH who can't get to a normal baseline and just can't function due to pain and memory and concentration issues.  if you describe your level of functioning completely I bet you would qualify.
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Nami81




PostSubject: Re: Just Diagnosed   Tue Sep 27, 2016 3:30 pm

South Africa
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Nami81




PostSubject: Re: Just Diagnosed   Tue Sep 27, 2016 8:20 pm

Oh man my husband said he doesnt believe in illnesses where they cant identify a cause and he says there is nothing wrong with me. Its kind of frustrating living in a world where nobody understands...like I'm faking my migraines and elevated brain pressure and blindness. I joined a facebook group called 'living with iih'. Its the only place I know where people understand..
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Sophiasmom
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PostSubject: Re: Just Diagnosed   Wed Sep 28, 2016 3:30 am

we all totally get this.  it has happened to all of us.  so, he doesn't understand that your brain pressure is abnormal?  does he not realize that 100 years ago, we did not know the cause of most illnesses that we understand today?  does he think we are so smart that we know everything there is to know?  he thinks you have hysterical blindness?  I really cannot tolerate people like that.  I am SO SORRY.  I have been mistreated by many in my family, and lost friends over this.  I have now moved to the forest down the end of a dirt road to get away from people because I can't stand this.  I am so much better and my ICP is normal now but I still have major sensory problems that most people don't understand, and I'm tired of dealing with it so I just want to be alone.  

there is a group called Invisible Disabilities Association and they put out a booklet called "But You LOOK good"  that it might be helpful to order for your husband to read.  although once a person has an attitude like that, it's hard to change it.  my surrogate mother took that attitude and then supported my ex in our divorce, ignoring the fact he was abusive and so he got joint custody and was enabled to continue his abuse.  it was a complete nightmare, and her attitude made it so much worse.  I am so sorry, I hope your husband doesn't make your life completely miserable.  mine knew I wasn't faking it but it served his purposes to make out that I was, just to hurt me intentionally.  make sure you aren't dealing with one of those.
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ashl

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PostSubject: Re: Just Diagnosed   Fri Oct 14, 2016 3:56 pm

Been awhile since my update and I have more questions (sorry!):

My NO has been following me weekly - despite the spots I have my field of vision and acuity tests come back nearly perfectly normal just with enlarged blind spots. I was started 2.5 weeks ago on 1000mg Diamox/day. At my next weekly appointment the field of vision was the same but optic nerve swelling on OCT looked worse so she put me up to 1500mg/day. This week (Tuesday) was the same so she put me up to 2000mg/day. 

I seem to tolerate the Diamox better than most, which I'm happy about because the side effects seem to make a lot of people miserable, but I'm really concerned about if it's helping or not. How fast should I feel the relief? I felt only a little better on 1000mg, on 1500mg my headaches nearly went away, now on 2000mg my headaches are back but not as severe. Also, the past two days my "eye dizziness" as I call it (the inability to focus on things because the pulse in my eye is actually moving where I'm focusing) was nearly gone but today it is back. 

Should the road to recovery with Diamox be a straight one or are the ups and downs like I'm experiencing "normal"? Also, should I be getting better within a day or so of upping my dose or does it take longer, like weeks/months? I'm sorry for all the questions, I just can't find any papers or other resources that outline what is typical for a person with IIH on Diamox. 

I continue to lose weight slowly (lost about 10lbs so far) but it's still not enough to be significant, I think it's only like 4.5% of my starting weight.
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Nami81

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PostSubject: Re: Just Diagnosed   Fri Oct 14, 2016 5:03 pm

I stopped taking diamox and didn't have time to see my neuro again. Now I can work again and peel vegetables, but I see spots.

I joined a facebook group which answers all my questions instantly. Look for Life with IIH.

From some polls I did on the group about 90% of people who answered said they experience high pressure symptoms daily even while on medication along with medication side effects. Headache may or may not be one of the symptoms, I excluded it from the poll. So in short - you will probably never feel any feelings of 'relief'.

Some indicated that their eyes are ok but they still suffer daily with symptoms and med side effects.

In another poll I asked about weightloss and it only worked for about 17% who answered the poll.

Next is the eyesight, overall I think swelling improves on diamox, however some indicated that it took over a year for the swelling to go down. For me it went down significantly in a month. This will be monitored with tests.
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ashl

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PostSubject: Re: Just Diagnosed   Fri Oct 14, 2016 5:15 pm

I'm in that group and saw those polls but unfortunately polling in that way typically tends to give insignificant results - the group is made up mostly of people who have not been helped and/or who still suffer daily, so the results are biased.

I'm curious - since the Diamox helped your optic nerve swelling, why did you decide to stop it?
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Nami81

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PostSubject: Re: Just Diagnosed   Fri Oct 14, 2016 7:44 pm

It might not be as biased. The polls are just peoples opinions combined, not really a study. Its really just peoples experiences that they tell you about. Im not sure you'll find a straight answer on the forum either.

The side effects were killing me. I struggled to breathe, it felt like my mind was a jumble of nails and I couldnt find the one I was looking for. The sun burned me alive, Im busy surveying a large project, 4 hours in the sun each day. My hands stopped working right. And most of all extreme FATIGUE. I wasnt even on a high dose, I think my body just didnt agree with diamox. Plus I didnt have any more pills.

I still have to discuss it all with my doctor but I dont have time or money for that at the moment. My job and kids are demanding. I know its not the right thing to just stop meds, I just dont have other options atm. I have to work and I cant afford monthly trips to specialists. Its Africa, the public hospitals are apalling and I have to pay for private hospitals and all doctor fees.

Your IIH is at a much more severe level than mine, if 2000mg doesnt even bring down the swelling and your LP that high...
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ashl

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PostSubject: Re: Just Diagnosed   Sun Oct 16, 2016 3:04 pm

Ah, you got some bad side effects, that sucks. I hope you're able to see someone soon to make sure you continue to get better Smile
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ashl

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PostSubject: Re: Just Diagnosed   Tue Nov 29, 2016 8:13 pm

Hi again everyone,

It's been a while since I've been here and thought I would update in case anyone is interested or in case anyone would like to hear some good news (I know I really love reading other people's success stories!).

I've been on 2000mg/day of Diamox for about a month and a half now, after going up from 1000mg and 1500mg. I'm also down 20lbs, which is approximately 10% of my BW. My headaches are all but gone, which has been wonderful. If I get a headache at all during the day it is usually very mild. I can bend, lay, cough, etc. with no pain. I saw my NO recently and she is thrilled with the progress in my eyes. My visual field tests are normal and my papilledema has reduced from grade 4 to about a grade 1. The blind spots that prompted me to seek treatment are still there but seem to be becoming smaller and less opaque.

I'm really happy with the results so far, but always worried that the Diamox will just decide not to work any longer! I also worry about side effects, but I've been lucky to have docs that are keeping an eye on me. My potassium is at the very lowest number in the "normal" range, and my CO2 is low but I am not in acidosis. Kidney function is "beautiful", as my doctor put it. I'd like to be able to exercise more to get healthier but I get so out of breath. The doctor has said that's partially Diamox and partially anemia, which I just found out I have quite badly. I will be put on an iron supplement shortly. I doubt the anemia is related to the IIH, though. 

Anyway, my next NO appointment is in January, and she said that if my papilledema is resolved (which she expects it to be) she will start tapering me off of Diamox. That's a really scary idea for me right now, but also really exciting.
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medmisfit
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PostSubject: Re: Just Diagnosed   Wed Nov 30, 2016 5:59 pm

That is wonderful!!! I'm so glad to hear that the Diamox is working for you. I had to take Potassium and Iron when I took Diamox because it flushes that stuff out of your system with all the fluids. It's not unusual to have anemia or exercise intolerance. Start slow and work your way up. I literally had to add a step a day at one point, but it worked.

Thanks for sharing, and I wish you continued success!

Take care,
Julie
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