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 Just diagnosed

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Nami81

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PostSubject: Just diagnosed   Wed Sep 21, 2016 3:18 am

Well here I go.

It took me a while to get to the root of all my problems. I thought that the first step would be: Figure out what the problem is (that took about 2 years between doctors without a clue) and then: Fix the problem.

Anyway, at least the neurologist I ended up seeing almost immediately suspected IIH and he knows the condition well enough. He followed the exact steps to confirm the diagnoses.

The things that annoy me:
- I'm struggling at work (I was just on 2 weeks sick leave while being diagnosed and in pain)
- I have vertigo and ear pain. Full blown constant vertigo, feels like I'm walking on sponges. Nausea.
- I have the crappy side effects of diamox. (I call it diamox, but the name is different. Same ingredients).
- Insomnia?
- Vision is not much improved
- Im not going to work tomorrow

Good things:
- Headaches after the LP are finally gone
- Pressure seems constant, but Im not sure. High pressure usually strikes for a day or 3 and then subsides to slightly high pressure.
- I can walk around and do things
- I went to work today
- I know whats wrong with me
- My husband knows whats wrong with me (most of the time he thought there wasnt really anything wrong with me)

I'd like to know which conditions you were tested for before your doctors figured it out and which meds you were on.
I had various blood tests and a complete scan of my internal organs. Ear specialist told me that the tinnitus was due to stress and grinding my teeth.
I was on anti-inflammatory, nausea, motion sickness and migraine meds. Later cholesterol medication, even though my count was just slightly higher than normal (I had an allergic reaction that caused severe chest pain), later on beta-blockers which gave me astma attack.
Doctor later suggested a light anti-depressant to reduce my stress levels. Those gave me brain zaps because I didnt follow any schedule.

I dont know if my car accident 8 years ago might be a cause of the condition. I hit my head hard enough to undergo a personality change.

Eye tests, MRI, MRV, CT Scan, LP confirmed IIH.

This is the third MRI I've had and all of them were good. There is only a small lesion where I hit my head, and the latest one shows I have a sinus problem in my deepest sinusses.

Some questions: Have you calculated your BMI and what is it?
Do you smoke? Do you think that will make things worse?
Do you often feel stressed or experience anxiety?
Did you try claiming disability benefits and did it work? Or not disability, not sure what its called.
What is the cause of IIH, because people keep asking me and I dont know what to say....
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Nami81

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PostSubject: Re: Just diagnosed   Wed Sep 21, 2016 10:33 pm

The doc upper my dose today after only a week. Now 3 times a day.
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Sophiasmom
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PostSubject: Re: Just diagnosed   Thu Sep 22, 2016 5:14 am

hi! welcome to the site.  sorry about your illness but glad you finally figured it out.

I had symptoms for 11 years before I got a diagnosis.  I was told I was just depressed or sleep deprived or crazy.  when I crashed it looked like multiple chemical sensitivity, which a lot of us have but don't get that diagnosis.  I figured out that chemical exposures spike my ICP.  then I figured out I had sleep apnea and I thought that's what was making me so sick.  treating the sleep apnea helped tremendously.  but it was very hard to treat perfectly so I had jaw surgery and that put me into remission, even though I still have sleep apnea.

Idiopathic IH means we don't know what causes it.  make sure that all secondary causes have been ruled out.  I think a big one is sleep apnea, and if you have insomnia I think this should be assessed.  teeth grinding is usually associated with sleep apnea.  your head injury could definitely play a role.  head injuries can precipitate sleep apnea too.  that said, in IIH we see decreased jugular venous drainage and evidence of brain swelling.  so there may be something anatomical that they haven't pinpointed yet.  my case suggests there is a jaw issue, because advancement of my mandible led to remission.  I assume you had an MRV of your head; if you also get an MRV of your neck, this could help to rule out venous compression in the neck, which can be caused by the styloid process and this can be treated surgically.

I'm sure smoking makes everything worse.
I think all of us have anxiety, this has been a topic of discussion in the past.  there seems to be something about ICP that causes it.  maybe it's just me, but I think that having your brain squeezed probably triggers a fight or flight response, physiologically in the body.  there is some scientific evidence of this.
I was quite thin when i was at my most ill.  many of us with IIH are thin.  I'm not thin now, but my weight doesn't seem to be an issue.  I did get worse during my last pregnancy, but I think that was from the worsening sleep apnea.  however, if you are overweight you should try to lose it, because for some of us it makes a huge difference.  and even in people who are normal weight, losing more weight to be significantly thin has made a difference.

I am on disability.  I made the claim before my diagnosis, based on my chemical sensitivity.  I do think it is possible to get it based upon the IIH.   if you go through the treatment and you cannot get to a place where you are functional, if you describe your daily functioning in detail to demonstrate that you are not well enough to work, you may be able to get disability.  with my chemical sensitivity, minor exposures that others cannot detect in order to protect me from could make me very ill, with symptoms that turned out to be ICP.  therefore there is no work environment that is safe for me.

I hope that helps!
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Nami81

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PostSubject: Re: Just diagnosed   Thu Sep 22, 2016 8:30 am

Thanks for the reply. I definitely dont have sleep apnea, although my husband had it and it was fixed by removing his tonsils and enlarging his nasal passages.

I am one of the most healthy people out there. The symptoms all started with my 2nd pregnancy. Even while being precribed all those meds from my GP, I never used the prescribed meds because I knew they wouldnt work. I generally live completely medication free. Even with headaches, I rather sleep than take pain medication. With a migraine I keep the migraine meds for times when it's really unbearable.

I definitely have a sinus problem, but I think it's caused by IIH. I've adressed it as a seperate issue. I get sinus flare ups a few days after each migraine attack.
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Sophiasmom
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PostSubject: Re: Just diagnosed   Sat Sep 24, 2016 7:25 am

you might want to read about UARS on doctorstevenpark.com.  I didn't think I had it either, but it turned out to be the key to everything, even though no sleep labs besides Stanford could find it.  and I'm a doctor.  our thinking about sleep apnea, even in the medical profession, is all wrong.  probably most humans have it.  my son and I have huge airways now from jaw expansion, and we still have sleep apnea.  it's just better.
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Nami81

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PostSubject: Re: Just diagnosed   Sat Sep 24, 2016 10:24 pm

I have no trouble breathing while I sleep and I also dont snore. My nose is completely open and I breathe easily, but my deep sinusses are congested, in my jaw and ears, etc.

I sometimes have insomnia due to anxiety. My recent insomnia seems related to the diamox. 5am in the morning I fall asleep. Tried a few beers last night and it put me out like a log, but it made me feel really ill because of the diamox. Felt like a flare up in pressure and I got a mean headache and tinnitus returned for a few hours.

These meds are really killing me. I eat something then take it 3 times a day. I feel like I want to throw up most of the time. I get insane pins and needles in my hands and feet. When in my feet my legs feel like jelly. And it seems to have little effect on the pressure. My dose is only 750 a day. Maybe my doctor will increase it again.

In the meantime I'm going to focus on losing weight because I'm convinced it will cure me.
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medmisfit
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PostSubject: Re: Just diagnosed   Tue Nov 01, 2016 8:38 pm

There are other meds besides Diamox, so track your symptoms and talk to your doctor about making a change if needed.

Unfortunately, weight loss doesn't always help. IIH affects everyone despite their gender, age, or weight. It has helped in some cases, but not a guarantee. We always recommend you be healthy, but IIH can affect the absorption of Vitamin A, as well as other enzymes, that can make weight loss difficult and weight gain inevitable for some. I personally gained a lot of weight AFTER diagnosis. I also tend to get worse symptoms if I drop weight too quickly or lose too much, so you may want to keep a journal to track your food and symptoms. I hope the weight loss works!!!
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