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 Its been over a year

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acerousme
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PostSubject: Its been over a year   Fri Jun 06, 2014 3:49 am

It has been over a year since I have been on here. I had gone into remission, and things were great! My doctor was weaning me off of the medication, and within six months I was to be off of them. Life couldn't have been better!

I finally had a career, and was doing so well! My fiancee and I adopted a dog, and were looking at houses!

Then it all came spiraling down. It started off as a heartbeat in my ears. I ignored it. I figured it was because I was PMSing. I thought it would go away. And then the brain fog hit. My stutter came back and I knew I didn't want to go back to where I was. So I called my neurologist, and got in ASAP. Once again, my medication has been increased...back to two diamox a day. I figured why not....get it under control.

And without warning, it all hit me at once. Spiraling down further, I could feel the stress and tension taking over me. My career was just getting started. We were looking at houses. My life was just getting good AGAIN!


And now I am here. The searing pain in my head, the sore eyes, pulsing ears and a fatigued mindframe that wants to give up. 

I could sit here and ask where I went wrong. But I am not going to do so. I don't have time for a pity party. I don't want to lose my job, or be told I am going blind again. Screw that! A MAKEUP ARTIST CANNOT BE BLIND!

So, it is with mixed emotions that I say hello again to you all. Some may remember me. Most will not.

so uh.....hi


The children almost broken by the world become the adults most likely to change it
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Sophiasmom
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PostSubject: Re: Its been over a year   Fri Jun 06, 2014 4:11 am

hi Jenn!!!  I missed you!  I am so sorry you got sick again!  next time don't let them wean you off your meds, I hate when they do that.  I wonder if a brain MRV is called for.  if you have a collapsible transverse sinus then maybe that's why you couldn't just get back to where you were quickly.  once the pressure builds up if it collapses the sinus then it self perpetuates the ICP.  sometimes in those situations an LP can drop the pressure enough that it re-sets.  it's worth asking about.
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Keren
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PostSubject: Re: Its been over a year   Fri Jun 06, 2014 7:21 am

We keep forgetting that this is idiopathic intercrainial hypertension. so far.... of unknown origin. and the ICP is a symptom not the cause. we keep treating the symptoms and hoping that the cause of the disease will go away on its own. And some times we are lucky that it does, but if it does, it is almost through blind luck at this point. like trying to treat pneumonia with soothing throat sweets - probably not the answer to the overall disease, and more a testament to the human body then the miracle of the 'throat sweets'. 

but doctors will insist on trying to take people off their medication as soon as they see their symptoms start to respond to the falsely low pressure environment they have created in the brain by reducing production of CSF, however having not treated what was the cause of the problem in the first place their falsely lowered environment will soon rise back into high pressure as the disease reestablishes itself without the drugs to maintain it. I am sorry that you are back here, but a least you were paying attention and caught the signs before you ad come all they way off the medication and done too much damage to yourself????
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PostSubject: Re: Its been over a year   Sun Jun 08, 2014 6:50 am

Hi Deb!! Ive missed you too! Now if you wouldn't mind explaining the sinus thing? lol

Hi Keren Smile  I was the one that decided to drop my meds. My neurologist is completely supportive of what I decide while still being professional, and honestly? My FIRST neurologist was a complete fool and tried treating me for migraines and wouldn't listen. This neurologist has told me about the low sodium/vitamin A diet, and the many options I have. I am pretty lucky that way. That being said, I don't want to be on Diamox for the rest of my life, and I feel that I can control my IIH. I honestly think what happened was when I developed a nasty cold about a month back, all the coughing and sneezing messed me up. And the super high sodium soup too. I honestly don't know though. All I know is that Diamox is a pain, and the side effects that crap gives me is almost too much to handle.

But give it time...I am continuing to work. My boss also has a rare disease so she is quite understanding. And I AM working towards full time. She told me to give it a few months, and she would hold the position for me. Living with IIH is definitely a struggle and a major pain. Hearing "But you don't look sick" makes me want to snap. I am so lucky that I do not have it to the extent that some do, and I count my blessings daily. Will I ever be 100 percent? probably not but as long as I am relatively pain free and still have my vision, I will continue to be a survivor and give hope to others. Maybe some day they will figure out what is causing IIH. But at least for now they are trying to make us comfortable?


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PostSubject: Re: Its been over a year   Sun Jun 08, 2014 7:11 am

hey Jenn I sent you some papers to your email, to explain it.  so lmk if you don't get the email.
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Keren
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PostSubject: Re: Its been over a year   Sun Jun 08, 2014 11:41 am

Oh Jen, I feel you! I am finely balanced too with colds setting me off and I had a neurologist that diagnosed me migraines and wouldn't listen too. I do hope you can start to find a level again soon...

If you have (what i have started thinking of as) 'secondary' IIH (ie you have identified the cause - vit A, the drug that set you off, a hormone, a positive diagnosis for OSA, gluten) then i recon people can set about managing their condition to get off the drugs. because you are right, diamox (and topamax) are not a fun drug, the side effects are harsh, the effect on the kidneys are harsh and no one wants to have to push pills for years.

I think if people want to try and hit all those things for IIH (not just 'secondary' IIH) and try and get of the drugs, then they might get lucky. and more power to them (like i see now you were doing) because no one wants to be a pawn or a sheep in their own life. and if it doesnt work, it is all data to add to the log book, as we keep on in our trial and error. We pick ourselves up and add it to the list and think how to hit it again next time.  I just get mad when it is the doctors that are blindly pulling us off the drugs through lack of understanding. grrrr lol.

anyway some one else had put on the list of causes from drugs and other conditions - dont know if you saw it or are interested now, but where applicable, if you can control any of those factors it might be off assistance....
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PostSubject: Re: Its been over a year   Tue Jun 10, 2014 6:39 am

Deb, I got the email...sorry I haven't responded. Work has been absolutely NUTS.

Keren- The drugs they give us are insufferable!!! And most doctors/nurses have not heard of IIH or just think its a migraine? Those people frustrate me.

I have found a balance for now. My head is kind of spacey today and I can feel the pressure a little bit. My eyes are basically watering more than usual. And after looking at that list?! Well...it makes a lot of sense. I have not gone on birth control since being diagnosed. And it seems like my sinuses are actually cavities of pure hell. lol

ugh. I just wish there was a cure.


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PostSubject: Re: Its been over a year   Tue Jun 10, 2014 6:46 pm

Jenn although it is absolutely fantastic to see you here hug I am so sorry that your remission has come to an end, but don't give up hope it can happen again. I know how frustrated you must be especially when everything was back on an even keel. 

Have you seen an allergist? I used to suffer terribly with sinusitis, and still have the occasion flare up, in the end my Neurologist referred me to an ENT Specialist. They tested me for lots of stuff, and found that my sinus's had basically become sensitive to everything. They prescribed a nasal spray which I have to use twice a day, and I have to admit the difference has been amazing. It might be worth seeing one to see if they can offer a solution. If you can at least get rid of the sinus pain, then that would be half the battle.

In the meantime you could try steam inhalation, or a hot shower or steam bath, a nasal spray, get a humidifier, and use hot wet packs on your sinus'. I've also got a humidifier and that does help. I don't sit to near to a fan because that just makes them flare up, because it's just blowing hot air and dust.
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acerousme
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PostSubject: Re: Its been over a year   Wed Jun 11, 2014 5:30 am

Hi Heidi! I hope you've been well! 

I did see an allergist. And he said I reacted to nothing which I find odd because I have gone to the hospital, and had to get epinephrine...and now carry an epi pen. My fish tank kept everything super moist, but we had to get rid of it as in the summer our place became a Sauna. But I did start using a Neti pot. It has helped so much. And when I started using it the gunk coming out of my nose was unreal.

Its funny, I think of all of the issues I am having now, and it scares me. It all is tied into my IIH, and it is a vicious cycle. :( For instance, my anxiety. It goes up while I am in the brain fog....but then I start to panic when I am not because what if it comes back, and then it does. It is like I am a rabbit trying to chase a carrot down my own rabbit hole...

I have talked to a few people who have gone into complete remission, but I have to wonder...was it IIH or something else? Everybody hears "hypertentsion" and thinks about high blood pressure. LOL One girl at work was even telling me that she had IIH, and got rid of it by cutting out all fast food. While the sodium cut would have helped, I doubt she had IIH.


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PostSubject: Re: Its been over a year   Thu Jun 12, 2014 3:04 am

Hi Jenn.  So sorry to hear you are having trouble again.  I do have to agree with Deb on the cutting out the meds.  Just for future experiments (  :roll: ), if anyone is thinking of cutting back on meds on their own, the safest way is to very slowly reduce the amount of meds, like taking a few weeks in between each reduction, to see if anything changes.  If any of the symptoms start to come back, you'll know that you feel better because of the meds and need to keep taking them.  I have been able to lower my meds to minimum doses but that is as far as that goes.  I cannot go without them.  And, now that I am on such low doses I cannot miss a dose.  As you now know, Jenn, it is so hard to get back on track.  Keep trying, keep a good medication and/or symptom log, and try to not stress.  You were able to get to feeling better once and I'm sure you'll get there again.  We are cheering you on.
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PostSubject: Re: Its been over a year   Thu Jun 12, 2014 6:59 am

Hey Wylee! Good to see you (given the circumstances). I had cut back to 250 mg of Diamox a day. I was doing 6 more months, and then we were going to do 125 mg, and so on and so forth.  Man oh man I did NOT miss the side effects of this stuff. I forgot how numb and tingly my extremities got...my nose included lol.

I honestly just wish to understand what is causing it. So far, the cut back on sodium has helped, but a MAJOR reduction in Vitamin A has helped more. But Vitamin A is in a lot of veggies, and my diet is already so limited....BLAH! This sucks. One big giant circle.

But I am so glad I have you all to talk to. It really helps. So thanks to you all!


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PostSubject: Re: Its been over a year   Thu Jun 12, 2014 4:50 pm

Keep trying different combos. Jenn, but be sure to keep a really thorough log to help sort it all out.  Might be a combo of diet and weather, or stress and activities, or meds and weather......see what I mean.  If you can get into the habit of writing it all down, after a bit, it seems to make better sense.  I do hope that you are able to solve your puzzle quickly.  Life is so much more pleasant when it's without the IIH/meds symptoms!!

BTW, I am on 250 mg Diamox once/day, but it seemed that dose was OK only after we added Verapamil to the mix.
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PostSubject: Re: Its been over a year   Fri Jun 13, 2014 6:15 am

I keep a log, but the only thing that happened was a cold, then my place was sprayed for bugs as a preventative. So Im not sure if it was the pesticides or the cold.

I'll have to ask my neurologist about verapamil.


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PostSubject: Re: Its been over a year   Sun Jul 27, 2014 3:52 am

Jenn, how are you doing now?
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