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 Tired of feeling alone!!

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PostSubject: Tired of feeling alone!!   Mon Jun 25, 2012 1:58 am

First topic message reminder :

So, I'm new here...and I've done some research on IIH but I feel like I am stuck between a rock and a hard place. Here's a bit of my story

I am a 23 year old female, in Canada BTW...

I went to the emergency room in March...because I was having these weird almost "stroke-like" symptoms with a headache, nausea, and blurred vision to the max. The doctor sent me for an emergency CT scan, and came back looking pretty worried. He referred me to a neurologist...about two weeks later, I saw this neurologist. She shone her stupid lights in my eyes, and did her little tests...yeah that was fun....NOT!

She wouldnt give me any details, but booked me for an "emergency lumbar puncture"...which took two weeks to get. :/ I was SCARED about that. I had never been for a tap, and didnt know what to expect. (about a week and a half before my boyfriend took me to get a tattoo. I figured if I could do three hours in the chair, I could do 5 minutes of pain...I'd rather do the tap than a tattoo). The tap was quick and easy! It felt like a quick pinch for the freezing, then nothing. Laying in bed for 10 hours sucked!! BED PANS ARE NO FUN! :no:

So for about two days I had a normal life after the tap. My vision was back to normal, the headache was gone, my ears weren't ringing, and I was laughing again. But the relief didn't last long, and I was back to square one. I went to the the neurologist and she diagnosed me...

Basically it was "you take this medication, its called Diamox, it will make your feet numb and tingly. And you have to lose weight". I got a little mean at this point and called out "BS" but not abbreviated. I have lost 215 pounds in just over a year...When someone tells me I have to lose wight now I get a bit...defensive. I still have about 60 pounds to go, but at least give me credit, y'know?

I asked her if the Diamox was a sulfa drug, and she said no...and that I wouldn't be seeing her again. My doctor can take over from here...

The doctor I have is amazing (I switched doctors after I was diagnosed as my previous GP didn't take my headaches seriously...he simply called them tension headaches). She hasn't been able to track down the original neurologist that diagnosed me, so come Monday her office will be finding me a new one. My ophthalmologist has fit me into his busy schedule, and I see him every three months, or sooner if I need to.

What is frustrating, is I was not told anything about anything! I am already allergic to the sun, so now I have to avoid the sun as much as possible. even with an SPF on.

I know I have to cut out sodium (I did some research), sugars, artificial colors and flavors...etc...trouble is, Im allergic to a lot of foods, so I feel so limited.

And the headache. I'd say headaches, but mine just doesn't go away. This Diamox sucks! I feel so frustrated! I've tried explaining to my family that I have to stay on the Diamox until I get into someone for something else..., I'm at everybody else's mercy, and I cannot stand it! I want to be able to get back to work, to be able to work out! To actually go outside with my boyfriend! To enjoy sex again!!!

Ugh! I am so frustrated! And when my family brings up "well, its reversible...go work out and it will help!" I feel like lasers could come out of my eyes at anytime. Nobody seems to get it. The pain is worse than anything I have ever felt, and I have a high pain tolerance.

I just...i don't know. Help? Sorry for the long read. If you read it all, CONGRATS! And thank you! And sorry if it jumps around. I just feel like I'm at my wits ends... :(
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PostSubject: Re: Tired of feeling alone!!   Thu Jun 28, 2012 3:26 am

Thanks for the help everyone! I've got a pretty lil list going now!

Funny you mention Lupus, and Polycystic ovarian syndrome...I was tested for Lupus, and I was one symptom short of a diagnosis... And for my ovaries..My gyno says that they aren't working properly. He put me on the nuva ring, which I removed last night due to a non stop stomach ache and terrible leg pains. He said that my ovaries aren't producing eggs, at all, which is more than likely due to the cysts on my ovaries.


......some doctors....lol
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PostSubject: Re: Tired of feeling alone!!   Thu Jun 28, 2012 4:45 pm

Jenn;
FYI, it has been shown that 70% of women with polycystic ovaries have obstructive sleep apnea. now, I question the statistics in all of these studies because most of them use hypopnea criteria that are too strict and will miss milder forms of OSA (which actually come with more symptoms). more than likely the percentage of women with PCOS who have OSA is closer to 100%.
also, see these papers:
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which suggest to me that IIH should be PART of the criteria for making a diagnosis of Lupus, so if you were missing one sign then tell them IIH would be that one, if they weren't counting it. This suggests that prednisone is first line treatment. not that this is a great long term option but I can tell you that when I take Prednisone I feel NORMAL. if you have lupus it should at least be in your "toolkit".
anticardiolipin antibody (ACA) can be part of the syndrome of antiphospholipid syndrome (APS) which has been seen in IIH and it has been suggested that the antibody and IIH makes the diagnosis of APS. interestingly, ACA is seen in OSA and has been shown to decrease with treatment of OSA. so which causes what? maybe the ACA in IIH is just a red herring, there because of the OSA which is missed. my positive ACA is now GONE after 5 months of CPAP. imagine that! but my IIH is not gone with it. because CPAP is not a great treatment when you have IIH.
Deb
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PostSubject: Re: Tired of feeling alone!!   Tue Jul 03, 2012 9:49 pm

Well, I have my list of questions all ready, and my neurologists office doesn't call....so no appointment :(

I think I am just going to try and find a new neurologist. This is ridiculous...


And..I have a question... Does anybody else get joint paint, or leg/arm pain from this? I'm trying to make sure my symptoms are normal..


:( It WAS a good three days, saturday, Sunday and Monday rocked...Im back to square one...headache, dizziness...I am so tired, that all I wanna do is sleep...:( this blows.
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PostSubject: Re: Tired of feeling alone!!   Wed Jul 04, 2012 3:35 am

oh no Jenn; I thought your appt was LAST friday???
I have read that ICP can cause sciatica, which I do get.
I have read it can cause neck pain that can radiate down the arms.
hope that helps.
Deb
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acerousme
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PostSubject: Re: Tired of feeling alone!!   Wed Jul 04, 2012 4:13 am

I didn't receive a call from them. Only from my doctors office (when they told me they had made contact..I wasn't given a time or anything)

Deb, I just saw your post about lupus and such. I have a doctors appointment next week, so I will be bringing it all up to her. I'm just sick of the pain...the back pain, the NECK PAIN...ugh..the neck pain sucks.

And not being able to get anywhere with it...sucks. I got my first "you don't look sick".....sigh...


this sucks
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PostSubject: Re: Tired of feeling alone!!   Wed Jul 04, 2012 6:39 am

Jenn I'm so sorry..it really does suck! I don't understand why you're having such a difficult time getting an appointment..maybe it is time to find a new neurologist. Starting over sucks, but maybe they'll be more attentive & see something your other doctors have missed.

I've definitely had neck & back pain, but everyone is different. There are also a lot of other contributing factors & side effects, so I think it's good you're getting it all checked out. I'm not sure what you've tried, but there are some things you can do that have taken the edge off for some of our members. The biggest for me was what I like to call my sweet spot..laying on my side at a 45-60 degree angle. You may have to experiment a little because too high or low brings on different symptoms, but it's totally worth it if you can find the right angle..be sure to support your side with pillows, so you don't cause any other back problems. You can also try a cold can of soda at the base of your neck or moist heating pad wrapped around your neck/shoulders or down your spine..sometimes I alternate, but there are some people that only respond to one or the other. It's been awhile so I can't remember all the tricks, but at least you have a few to start trying..I hope you find some relief!

Julie
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PostSubject: Re: Tired of feeling alone!!   Wed Jul 04, 2012 7:18 am

Jenn, I'm so sorry, I know what you are going through. I was so sick before I discovered treating my sleep apnea. I didn't know what was wrong and I was at the point I wanted to die rather than go on the rest of my life in that misery. as long as my CPAP works, I seem to be OK. but sometimes there are problems and this past weekend was awful. the pain was so bad I could barely move. I just took some vicodin and laid in bed all afternoon. I find that at the end of the day I start to feel better. even before I knew it was IIH I had concluded that the problem was brain swelling that was getting triggered in my sleep, which would gradually go down over the course of the day due to gravity. for some reason, a hot shower always seems to make me feel better. the weekend before last, a dose of Lasix made a big difference. but other than that, it seems like I just have to wait it out and try to sleep better the next night. for me it is all about controlling the sleep apnea. please make sure you get tested for that; it's a huge piece if you have it.
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PostSubject: Re: Tired of feeling alone!!   Wed Jul 04, 2012 9:42 pm

I will be talking to my doctor about everything next week. They won't give me anything stronger than torredol for my pain...which is stupid due to the fact that it counteracts the Diamox. ....S.T.U.P.I.D!!!!

And taking a steady dose of ibuprofen and tylenol....yuck. The doctor keeps telling me its just a rebound headache...but it isnt, and I am not just taking pain meds for a headache. I'm taking it for the nasty neck pain as well....but nothing seems to really work. Its to the point that I don't even want to take the meds...whats the point? They don't even take the edge off!!

I just...cannot believe how many people have not heard of IIH. And how many medical professionals have NO IDEA what it is like...Its so frustrating!!!

...Sorry for venting, I'm just...grr!


The children almost broken by the world become the adults most likely to change it
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PostSubject: Re: Tired of feeling alone!!   Thu Jul 05, 2012 1:28 am

omg, how awful. they should at least give you some vicodin for when the ibuprofen doesn't work!
tell them to imagine this: they are driving up to the mountains and they have a potato chip bag in their car. when they get to the top, the bag looks like it's about to pop. tell them, That is my head. it's not medication rebound, my brain is being squeezed. to assume my pain is from anything else is ABUSIVE and negligence at the very least. be patient with them, try to educate, but be firm about your expectations. I can tell you that I did not receive adequate training in this area. I am a pediatrician so it's even more rare in kids, and I'm not sure what my internal medicine colleagues got, hopefully a bit more education than I did.

Priority #1: pain control
Priority #2: find a good neurologist who understands this and can support you, and help you find a good long term solution to get your ICP down.
Priority #3: get someone to order you a sleep study.
Priority #4: get the doc who diagnoses your OSA to give you a BiPAP machine, NOT a CPAP.

it's not just me, there is another person on this forum who also did not do well on CPAP and is fine on BiPAP. tell the doc that IIH is rare and not well understood but we do not tolerate regular CPAP. for insurance purposes you might have to take the CPAP home and prove that you don't tolerate it. ugh.

meanwhile, NEVER sleep on your back!
Deb
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PostSubject: Re: Tired of feeling alone!!   Thu Jul 05, 2012 6:44 am

Thanks everyone for the help!

Deb, I'm going to go talk to my doctor about a new neurologist. This one isnt working out, and I'd rather have one that is proactive about my health.


So once again, wish me luck...with my notes in hand, I am bound determined to get this right!


The children almost broken by the world become the adults most likely to change it
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PostSubject: Re: Tired of feeling alone!!   Thu Jul 05, 2012 2:15 pm

I am not currently taking 4 250mg tablets a day. When I first started taking them I wad taking 2 on a morning and 2 at nigh. I end struggling with the side effects and had really problems concentrating and felt spaced out all the time. My nureologist told me to stagger my tablets and take them regularly throughout the day. Doing this has really helped I still get side effects but they are not as extreme and feel mos though I am actually with i again
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PostSubject: Re: Tired of feeling alone!!   Tue Jul 10, 2012 9:03 pm

Well...I have an appointment tomorrow with my doctor. We are now looking for a neurologist that has a background in dealing with IIH.....woo. :/ I am NOT looking forward to this as I have zero patience for doctors that just...don't care.

In other news...I went on a road trip...and I got some sun...BAD IDEA. Well, I have this odd allergy to the sun. I put on my SPF 110 (because alberta is going through a...humidex heat wave or something orother), and I got the rash, and then noticed that the rash was WAY WORSE. I'm thinking its because of the diamox?

I also cannot keep myself properly hydrated in this weather. I am stuck inside due to the rash, in plus 40 C, with no A/C...just fans, and the rolling blackouts are not helping. And on top of everything, I had heat stroke yesterday.


WHY IS THERE NO HAPPY/MEDIUM WITH IIH???


The children almost broken by the world become the adults most likely to change it
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PostSubject: Re: Tired of feeling alone!!   Wed Jul 11, 2012 2:31 am

Good luck with your appointment tomorrow. I hope that it goes well.

As you have learned, Diamox (Acetazolamide) does make you sensitive to the sun:

.This medication may make you more sensitive to the sun. Avoid prolonged sun exposure, tanning booths and sunlamps

That is a direct quote from the "Diamox side effects" that Heidi wrote up for us in the IIH and Medications section. Do stay well covered since you are sun sensitive anyway.
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PostSubject: Re: Tired of feeling alone!!   Wed Jul 11, 2012 5:29 am

Its become more than sensitive. I run two buildings...that are about 20 steps away from eachother. I can walk to my other building and I get rashy...I seriously have spent all summer inside.

I make casper look tanned lol...and I have an olive skin tone. lol


I really just hope that I can get into a good neurologist..No other doctor will touch the diamox.


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PostSubject: Re: Tired of feeling alone!!   Wed Jul 11, 2012 6:46 am

a sun sensitivity rash with Sulfa was the trigger for me developing a Sulfa allergy. watch that closely.
we had talked elsewhere in this forum about how heat can increase your ICP. there is no happy medium because with IIH we have lost normal homeostatic control of our ICP. therefore any little thing can make it go up and ruin your day. I spent all day driving thru the desert from California to Las Vegas, the temp was up to 118 at one point. I only had to turn the AC off once to prevent overheating. but the elevation change is significant so by the time I get home I am wiped out. I could literally feel the pressure in my head going up the higher I drove up the pass.
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PostSubject: Re: Tired of feeling alone!!   Wed Jul 11, 2012 9:33 pm

AH! So that explains it! We were driving into the mountains, to get to our destination, which was exhausting, and painful. Not to mention the car did not have ANY AC, so we had to drive with the windows down. Then the next day it was further into the mountains to get to a glacier lake...then sitting in the sun for 5 hours (yay SPF 110...i STILL tanned....it was plus 40. Thats pretty darn hot for my area). Then the drive back....which was an hour and 15 minutes to our hotel...

By the end of the trip...I was seriously beat. I wanted to sleep, and cry, and sleep some more.

And I talked to my doctor today...I am stuck with that idiotic neurologist of mine. It will take about a year to get in to see another. And this neurologist said that after my diagnosis, I wouldn't be seeing her again....

two steps forward, one step back. Its still progress, but very little.

OH, DEB!!!...Just for you.....she's looking into a sleep study Smile


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PostSubject: Re: Tired of feeling alone!!   Thu Jul 12, 2012 2:56 am

well that's great news about the sleep study, but the neurologist issue sucks. hopefully with a new appt you can get some better attention. not that I think you should consider a shunt prior to finding and treating sleep apnea if it exists, but maybe if you saw a neurosurgeon they could help manage your IIH medically and follow you the way the neurologist ought to. it's not typical but it seems very few specialties really know IIH.

btw, is the pic you posted to your profile of you? just wondering. I am realizing that my forehead is really narrow compared to other people's. I think my skull did not grow wide enough in front for my brain, so that there isn't enough room for it and small amounts of brain edema cause me a problem. I have noticed this same anatomical variant in a few of the women whose videos of IIH are posted on youtube.
Deb
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PostSubject: Re: Tired of feeling alone!!   Sun Aug 12, 2012 11:08 pm

I think I figured out why rapid weight loss can trigger IIH. I am sitting here listening to the IHRF patient conference 2011 DVDs, and one of the presenters just said that as Vitamin A is stored in fat, that as you lose weight you will release a lot of Vitamin A which may trigger a higher ICP. this explains why I "crashed" after losing 10-15 lb.

she said that those with IIH have higher Retinoic acid levels, and she thinks that if we can block the enzyme that converts Retinaldehyde to Retinoic acid, then we can more effectively lose weight and prevent problems with drainage of CSF. the Retinaldehyde helps fat breakdown. apparently something called Citral can block this enzyme; it is a natural substance present in lemon grass (highest), as well as basil and grapefruit. I avoid grapefruit because it has a substance which can decrease your P450 function and has been shown to cause medication metabolism problems as a result.
so what she's saying is that supplementation with Citral may improve CSF drainage AND help us lose weight. I'm looking for a lemon grass supplement.....

the other thing I've learned so far: I got the impression they think that an LP shunt may actually cause Chiari.
Deb
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PostSubject: Re: Tired of feeling alone!!   Tue Aug 14, 2012 1:48 am

Deb,
that is realllllly interesting. I started eating a lot of basil, and grapefruit...trying to get more good stuff in my diet...if I chew on a basil leaf, it helps with my stiff feeling neck.

Try lemon grass tea. Its delicious, and it makes you feel energized.


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PostSubject: Re: Tired of feeling alone!!   Tue Aug 14, 2012 2:49 am

that's awesome, I would never think of chewing on a basil leaf!
I was looking for lemon grass in Whole Foods today but the salesperson said all they had was an essential oil for external use.
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PostSubject: Re: Tired of feeling alone!!   Wed Aug 15, 2012 11:54 pm

go to an organic place to find lemon grass...or even a health food store might carry it dried. Which is perfect for the tea. Add some honey, and a squeeze of fresh lemon and its delicious. AND...heres a bonus for the dried lemon grass

boil it for about 20 minutes, cool it, and put it in a spray bottle...all natural insect repellent for you, the kids, and the cat you are going to get...Very Happy


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PostSubject: Re: Tired of feeling alone!!   Thu Aug 16, 2012 5:08 am

fantastic, thanks!
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