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!

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 ! And sorry if it jumps around. I just feel like I'm at my wits ends... :(

hi sweetie;
I am so sorry for all you are going through. you will find people here know exactly what you experience and you will hopefully not feel so alone. one of our biggest gripes is that people look at us and say you look fine and they just can't understand how awful we feel. might as well get used to it, it seems like people won't understand unless they feel it themselves, and this is not a usual thing to feel.

I can't tolerate more than 62.5mg twice a day of Diamox. (which IS a sulfa drug in case you hadn't figured that out. I am allergic to sulfa but I am tolerating the Diamox) more than that sedates me and I might as well have brain fog than take the Diamox then. I have more bad brain fog that is disabling, than headaches. my headaches do tend to respond to motrin. my pressure isn't super high, I think because my biggest piece is obstructive sleep apnea and as long as I treat that my pressure tends to be lower. OSA raises your intracranial pressure so you should probably get tested for that to make sure you don't need to be treating that too. it might take the edge off your misery.

working out with IIH is very problematic. any valsalva maneuver (bearing down, holding your breath) will increase your intracranial pressure (ICP). if your blood pressure goes up it can increase your ICP. how can you work out with this? I try to move as little as possible because it makes me feel woozy. just things moving in front of my face makes me feel dizzy. tell your family that IIH is supposedly incurable; it is not reversible, it is treatable. until you find a treatment that allows you to function, you are going to have problems. it may not happen overnight. I have been on disability for 3 years. it sounds like you are hitting the wall of chronic disease and you are very frustrated with its limitations. I am so sorry. it is a major loss, as if someone died. the promise of health died. I want all of those things you want too, but I have set my sights lower for now, hoping that I will find solutions in the future that might get me back some of those things. have I given up? am I depressed? maybe. I am quietly, doggedly persistent. take a deep breath. this won't be a sprint. it will be a marathon. hopefully you will get there. we will be here for you on the journey. take heart.
Deb

Hi Acerouseme,
first may I say and on the FANTASTIC weight loss!! You go girl!

That is a job well done so don't let that insensitive jerk of a so called doctor rain on your accomplishment.

As Deb said, Diamox is in the same family as Sulfa, but in a slightly different configuration. I, too, am allergic to Sulfa but am able to tolerate Diamox, even large doses. I currently take 250 mg/day I also take Lasix (furosemide), a loop diuretic that also reduces the amount of water in your system. Hey, my docs never did tell me ANYTHING about IIH either. I had to read up about possible food and liquid intake options.
I do what I can for exercising. I find walking on a treadmill easiest for my brain to deal with. I am going to try doing aerobics in an inddor pool this week. I'll let you know how that goes.

Do have a look at the handouts that Heidi has put on the website. They may be useful for your family to see to help them understand what IIH is.

Hang in there gal.

Please never apologize for needing a good rant..we all have our moments & your story is pretty typical. It is all very frustrating & overwhelming, but you can have a good quality of life with IIH. I was on disability for a few years while finding the correct diagnosis & treatment, but I've been able to maintain fulltime employment since 2005..even with flare ups & shunt revisions. You have to learn your limitations & adapt behaviors, but it is possible..don't give up hope!

I'm sorry no one has been explaining things to you, but it sounds like you have some good supports & are on the right track now. There are different meds & procedures available, but everyone seems to respond differently so it just takes time to find the right treatment. Many members report Diamox side effects get better the longer you're on them, but I couldn't tolerate them at all the second time. Keep a symptom log & it will help them determine whether benefits outweigh the side effects. There are also meds that can help with some side effects like nausea, so you have options.


There are good resources & logs in the guides & print outs section, so I'd encourage you to look through them to see what may be helpful to you. I know there's a guide for talking to people about IIH, so maybe that would be a good place for you to start for family/friends. You could also invite them to visit this site, IHRF, or maybe even attend a doctor appointment with you. There's a lot of misinformation out there, so
education is key.

It sounds like you've already made HUGE lifestyle changes & have taken steps to improve your quality of life, so just hang in there..congratulations on the weight loss btw, that is truly amazing!! You're on the right track & we'll be here to support you as best we can.

Take care,
Julie

Okay..so the doctor did not explain any of this to me! So you will all have to help me out. I take 750 mg of diamox daily, and have to up it again in a week. Which as you stated Deb...puts me in a fog...and I itch all the time. But I would rather deal with all of that than have the full out headache!..

Diamox is acetazolamide, right?

And what is OSA? bah, I feel like a fool.

Thank you all for pointing out that Im doing great with my weight loss. The doctor looked right past it.

The ...diamox? er...acetazolamide makes me pee every 10 minutes. So I am constantly having to drink water because I feel SO thirsty!!

I noticed that I hold my breath a lot...during everything it seems! I can't run anymore. And the worst part is, I have a panic disorder too...so everytime something new happens, I freak out lol.

I am SO glad for this site! So glad!!!

hi, so sorry! OSA is obstructive sleep apnea. I have been studying it obsessively for almost 2 yrs and I think that the airway problem that causes it also causes breathing problems during the day. which, if you had them all your life I suspect you don't notice that you can't breathe but you just end up feeling panic. seriously I would go to an ENT and have them look in the back of your throat with a fiberoptic scope to see if you have any room behind your tongue. all I had was an airway about the diameter of a coffee stirrer. I felt like I was suffocating all the time. before I realized what was going on I was on Xanax for "anxiety". or maybe it's just that you spend 1/3 of your life while you're sleeping suffocating so how can you expect to feel normal during the day. I would definitely get a sleep study. you can try hanging your tongue out of your mouth when you feel anxious and see if it helps. I got a lot better after tongue surgery. I know this all sounds kind of crazy, but it's what I experienced.
yes, Diamox is acetazolamide.
don't hold your breath! keep breathing. I noticed that I get really sick after I have a good cry, because it involves a lot of valsalva. so if I can't stop crying I just try to keep breathing, and I sort of just hyperventilate as the tears run down.....
the itching doesn't sound good. that is a sign of allergy. I would try some benadryl and if the itching goes away I would definitely tell your doctor about it.
I just tried Lasix for the first time today and I am really impressed at the way it took my brain fog down considerably. my neuroradiologist thinks I can guesstimate my ICP based on my brain fog, and I would guess that the Lasix dropped my pressure by 100 pts! I found some evidence online that Diamox and Lasix can work together synergistically so maybe you could drop the Diamox dose if you added Lasix.
Deb

Deb...the feeling of choking on my tongue is one I am all too familiar with. I've gone to the hospital with it; tongue hanging out and all. They always say its a panic attack. Sure FEELS like I'm choking. I'm going to get it checked out for sure.

ahh yes...crying. It makes the pain so much worse, but I can't help but cry sometimes. Breathing helps, but I always end up choking on my own spit lol.

I take a lot of benadryl, just to help the itching. I've mentioned it to my doctor, and she's getting me a new neurologist...but Im at the mercy of their schedules. It sucks.

I'm also just starting out on my own. My boyfriend and I have yet to set up our blue cross for my meds, and I think I am going to talk to my doctor about some sort of living assistance. I work, but I'm able to work my own hours at my own speed...for the most part. But it pays less than minimum wage ...and I do a LOT of work. Most of it is at home sort of stuff. I'm a property manager, if you're wondering. But the job is ending as my buildings are being sold...And my boyfriend doesn't make enough to support us both, pay rent, buy groceries, pay bills, AND get my meds.

It just seems like everything is coming to a halt...or moving so slow that I feel as if I am moving backwards. And Canada is great because a lot of my procedures are free, but then the meds are expensive...so is coverage. And getting on assistance is tough unless you live alone...

Bah....so frustrating!!!

OMG I thought you might think I was nuts to talk about the tongue thing but I am so glad I did. I had the back of my tongue burned off; radiofrequency ablation it's called. I was having episodes of shortness of breath and feeling like I was going to pass out just from eating my oatmeal. since the surgery that is all gone. but let me tell you finding a doctor who even believed I had a problem was a bear. and I am a doctor myself. I had idiot doctors telling me there was nothing wrong with my airway and nothing wrong with my sleep study and all I needed was to find the right antidepressant. it will be hard for you to fight against this ignorance. I ended up going to Stanford to get diagnosed with sleep apnea. I saw an oral surgeon and 4 ENTs before I found one who believed I had a problem and was willing and able to do the surgery, at UCSF. it is not a procedure that just any ENT will be able to do. the ENT at Stanford didn't want to do it; didn't think it would help me. it didn't help the sleep apnea but it did help the daytime airway problem, which was half the problem. there are other procedures to get your tongue out of your airway, genioglossus advancement and maxillomandibular advancement (MMA). if you end up having sleep apnea, then I think you may want to consider the MMA. the reason why is because I don't think CPAP is the greatest option when you have IIH. breathing out against the CPAP pressure is like a valsalva and as I went up on my pressure it made me sick. I am doing OK on a BiPAP machine which lets me exhale against a lower pressure, but if I have problems with the mask then I wake up sick, like I did this morning. I need to tell you that if you really have a daytime airway problem like you describe, there is no possible way that you don't have sleep apnea. and the sleep apnea is surely exacerbating your IIH. you have to get that checked out. and don't expect your doc to understand the airway problem. ask to see an ENT, preferably a sleep surgeon ENT. where in Canada are you? can you go to a major university hospital? I would think that might be the place to go. one thing you can do is ask your doc to get a lateral neck Xray on you. your airway can be seen on this picture and you can ask the radiologist to tell you the smallest diameter of your airway. normal is about 11mm. the radiologist probably doesn't know this. you will compensate and extend your neck in order to keep your airway open more than it would be in the more natural position, so the number will be falsely elevated. ask if you have a normal curve to your neck or if it is abnormally straight. mine is still too straight after the surgery; my airway is still too narrow. I could go on and on and on. this has been such a long and complicated journey. tell me, did you ever have orthodontia? modern ortho narrows the jaw and I wonder if they made you worse.

I wrote you a note on the intro page but you hadn't responded to it. but I am worried about you saying you are allergic to the Diamox. if you know you are allergic, you shouldn't be taking it, because sulfa allergy can be really severe, something called Stevens Johnson syndrome. I would call your doc first thing in the am and ask about this. I would hate for it to become more than itching.
Deb

better yet, you probably had a brain MRI as part of your initial workup. get a copy and look for the view that shows the center of your head on a lateral view, so you can see the inside of your nose and mouth and airway. you'll see your spine at the back. you should see a little flap of tissue at the base of the tongue: your epiglottis. and the tip of your nose so you know it's the center. on that view, look at how wide your airway is behind the epiglottis.
it would probably be interesting for everyone here to look at their airways in the same way, I'm sure all of us have had MRIs. one might say well the airway is going to look narrower when you are laying on your back anyway. well, my position is it shouldn't, because that's what happens if we sleep on our backs and so if it's that narrow just laying there, what happens with the airway relaxation in sleep? again, mine was the diameter of a coffee stirrer on this view. of course the radiologist won't even note this as an abnormality. to me this is a symptom of the problem; that ALL humans have narrow airways such that we think that narrowness is in the range of normal. that's why the radiologist wouldn't even comment if they did a lateral neck Xray and your airway diameter was 4mm. this is not on their radar, however I believe it is the most serious health problem humans have.
Deb

Thanks Deb!

Funny thing is, my doctors name is Deb. I love the woman. I go to the Univeristy hospital here all the time. I also have three microadinoma on my pituitary gland. They WERE microprolactinoma, but since the secrection of prolactin has pretty much decreased we have changed the name. We being my doctor and I.

In total, I have seen over 7 different doctors, and found the right one for me. But she and EVERY other doctor in the office refuse to touch my meds. They would prefer if my neurologist would do that. But she has...disappeared. Literally. Nobody knows where her office is, or her number as she works in offices all over the city...And this neurologist told me "your doctor can take over from here". She was aware that I was allergic to sulfa drugs..

So now I have to wait to get on with another neurologist. My doctor told me if I couldn't wait to just got the the emergency room and see the resident neurologist.

Its basically a waiting game, and most of the doctors have not heard of IIH. I was told that it was completely reversible! And that it was because of my "weight problem"....EXCUSE ME?!? BITE ME!

Its a waiting game...this doctor has to refer me to that blahblahblah-ologist and I wait. and wait. Yes, canada is great because I don't have to pay for the scans, or any of the appointments...but i have to wait for everything. And the waiting period is anywhere from 2 weeks to 4 months.

Oh by the way. I live in Edmonton...I come from a super small town so having every sort of doctor at my fingertips is nice, but still...the waiting game SUCKS.

OMG I just looked on a map and you live near Banff! I am jealous, as I have always wanted to go there. in my past life I climbed mountains, not that I could do that again with the altitude effect on ICP. this illness has really cut me off at the knees. :(

I understand about waiting. my neurologist is always booked up 2 months out. I worry if I ever had to reschedule an appt about how long it would take to get back in. and today my son's neurologist completely blew me off and told me he didn't think my son has IIH, even though his ICP was elevated. he didn't think it was high enough, and thought the improvement in his autistic symptoms after his tap was a coincidence. even though it was so striking that it brought us to tears! so to get in with a new neurologist will be more than two months, meanwhile, who is taking care of my 4 yr old autistic son with IIH??? me, I guess. it's really not surprising that we don't know what causes autism when all the docs are so closed minded and won't think outside the box. I live in Vegas so chances are the new neurologist will be worthless also.
Deb

Oh Deb! I am so sorry! That must be quite the struggle for you!! Does IIH run in a family? I was never told.
Please give your son a for me! And then give yourself a really big from me!

I'm running into that issue with the neurologists! None of them seem to understand just how life altering IIH really is. My neurologist told me that IIH was completely reversible...as long as I lost 60 pounds. Then I would be cured!


Here's a question for everyone...when you sneeze, do your wrists hurt? I've brought it up to doctors before, and they all just said I was crazy...but maybe its related to IIH?

Yeah, I'm really close to Banff, and Jasper. I grew up in the woods, in a house nestled in the rockies. It was a perfect upbringing. It kept me pretty isolated from everything...including proper doctors. lol

Oh my goodness! I have to add this in here!! I got into a new neurologist!!! THIS friday! Wow! I am so happy, and so excited about this! Thats the quickest I have ever gotten into ANY doctor!...or -ologist lol

OK, now, things to do:

MAKE A LIST OF SYMPTOMS

MAKE A LIST OF QUESTIONS

REMEMBER TO BRING THE LISTS ON FRIDAY!!

I have found it very useful, when you finally get to go see the doctor, to have your lists with you. Most of them actually appreciate seeing that. It lets them know just how serious you are about the reason for your visit. And bring someone with you if you can. Boyfriend would be ideal candidate. If he had any doubts about how iih makes you feel it would remove those! It also helps in listening to what the doc says. Sometimes we get so nervous we don't "hear" what is being said. Another set of ears is so helpful, as well as the moral support.

So excited that you got an appointment so quickly. That is wonderful. Keeping

Ohhh boy...making a list. SO many questions...but all so valid. Thanks for the advice! I will let you all know how it goes!!

That's great news! I know these specialists are all 'hurry up & wait', but in my experience the neurologists are the worst when it comes to attitude. My best support has always been my neuro-ophthalmologist & GP. Linda gave you great advice..get your thoughts together & take a buddy!

Can't wait to read the update..good luck!!!

hi Jenn;
yes, IIH can run in families although I guess it is so poorly recognized that it is still considered reportable. I tried to show those reports to the neurologist but he just handed them back to me and didn't even look. what an A--!

as far as sneezing making your wrists hurt, I can understand why no one else would understand the connection but I do. one, a sneeze is a valsalva. it will increase your ICP. this can put pressure on the nerves in your spinal column, in addition to your brain. If there is already pressure on those nerves going to your hands, then this might be why a sneeze will be felt in your hands rather than anywhere else. what would be putting pressure on the nerves to your hands? well, if you have a forward head posture caused by an airway problem, such that you are holding your head forwards to keep your airway open, this will put pressure on the nerves in your shoulder, where they go to run down your arm. this is called thoracic outlet syndrome and I have this, more than likely caused by my airway problem. I get tingling in my fingers from it. I have atrophy in my hands. it started in my 30s but that was probably after 30 yrs of pressure on those nerves. interestingly, my son with autism has fine motor problems in his hands also. they see this in autism. but is it autism, or is it from his airway problem? he has sleep apnea too, and a very narrow airway.

Congrats on the appt!! that is amazing!! I hope it turns out well. I am doing fantastic on Lasix so make sure to ask about that.
Deb

Someone probably said it already, but the often overlooked cause of IIH (especially when you are still overweight) is too rapis WEIGHT LOSS. So Congratulations! It is amazing you lost all that and it sucks that you got IIH instead of an award!

I had not heard that and that explains what happened to me! I lost 15 lb in 3 weeks and that's when it all started! then I just kept losing weight. I got very thin, but still had nausea and severe fatigue, finally diagnosed as IIH 2 yrs later and symptoms clear when ICP reduced.
for sharing that!

Krystyn, I cannot find anything on that, regarding rapid weight loss triggering IIH. do you have any references that discuss it?
thanks!
Deb

I need some help with this list. I don't know what to ask. The one question that keeps popping up in my head is "why me? Was I predisposed?", but thats it. I am literally looking at this piece of paper and just...feeling so overwhelmed by all of this. I think its finally "hit me", y'know? This is real...This is something I have to live with.

Can someone help me with creating a list?

Jenn, there are guides that Heidi set up for us in the "Guides" section that are so very useful. Here is the link to the one on talking to your doctor: [You must be registered and logged in to see this link.]

there are many questions in this guide that you could use.

Check out the whole section.

I think it was the Merck Manual but Im not sure. I will look, unfortunately I read a lot of studies and I can't remember which is which.

Okay it wasn't a study it was The IH project... hope this helps.

"Idiopathic Intracranial Hypertension occurs spontaneously, with no reason or cause. IIH is usually associated with overweight women in their childbearing years. In some cases of overweight or obese patients with IIH, once they lose weight their symptoms subside and they go into “remission”. However, in some cases, weight loss does not have the same effect. Although it is known that weight can play some part in IIH, there needs to be more research done so doctors can gain more knowledge about this issue."
(The IH Project, n/a)

The IH Project. N/a. Retrieved from [You must be registered and logged in to see this link.]


The IH Project

thanks Krystyn.

Jenn;
major important question: ask for a sleep study! if you have to, tell them your boyfriend saw you stop breathing in your sleep. there is an association between sleep apnea and IIH and sleep apnea and papilledema so don't let them talk you out of this.
make sure you have had the correct studies to look at your cranial anatomy; an MRI Venogram to make sure there are no stenoses in the cranial veins, or thrombosis. sometimes hypercoagulability is associated, although sleep apnea causes hypercoagulability and I am not sure they haven't missed the boat when they say it causes IIH. I am actually beginning to think that in my family it is caused by a narrowing of our skull in the front so that there isn't enough room for our brains. it's called trigonocephaly. you can ask if the neurologist thinks your skull looks like it's the right shape. my forehead is narrower than my cheekbones, which I realize is not typical, so check yourself.
IIH can be seen in Lupus, so ask to be checked for that. I think it's also associated with polycystic ovarian syndrome.
Deb

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

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:
[You must be registered and logged in to see this link.]
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

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.

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

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