So I saw my neurologist...does anybody out there take topamax? I am now going on it, and going to 250 mg, twice daily of the diiamox. Is this even safe? My neurologist just seems...oblivious. I tried talking to her about my chemical triggers..and she said "no. thats a migraine".......REALLY?!?! I BEG TO DIFFER WOMAN!...and she's still going on about my weight. I've lost 230 pounds....SERIOUSLY...ITS NOT ABOUT HOW MUCH I WEIGH!!!

......This blows.

Not to worry about the Diamox. The 500 mg/day is still a low dose :roll:
Topamax is quite commonly prescribed for IIH. Many people are able to take it without being bothered by side effects. I hope you are one of those. Just be aware of how your mental status is. If you have any important decisions to make, discuss them with a family member or close friend before you decide. Better to err on the safe side.

It sounds like your doc just isn't responding to you. Can you take someone with you on your next appointment? Sometimes, when the doc sees there is a "witness", the attitude changes. It also makes it helpful to have someone to compare notes with.

Too bad your doc doesn't get migraines. Attitude changes big time when they understand what head pain is, and what the difference between IIH and Migrane is.

Oh my word!

Dear I cannot address the topamax but others can.

However, regarding her not listening to you and insisting it is migraine....she has no clue what IIH is (in my opinion). This is not a freaking migraine! I recommend finding a new neurologist; one who actually knows about IIH. Do some research. I can also say, from my own experience, that just because a medical center calls themselves a headache clinic, doesn't mean they know about IIH.


I doubt it is your weight, and frankly I am sick of docs saying that! :Angry:

I hope you get some answers soon.

i was on diamox and on topamax once now im on just topamax. I believe for me the diamox did more harm than the topamax, hence me being on the topamax now. Hope it works out for youXXX

I got super sedated on Topamax. some people do fine. I've heard the sedation may get better after many months.....
ugh about your doc. not the fat thing again. you poor thing.

my theory about the chemical triggers is that they are causing brain edema which then increases ICP. my hypothesis is that this is mediated by an increase in glutamate, which is also associated with migraine. but it begs the question of what is a migraine anyway? maybe it's brain edema???
I have been dealing with the chemical sensitivity for many years now and I mostly deal with it on my own because no docs really understand it. even ones who think they do. I've been given homeopathics, I've been told I need to "detoxify". but I have MRI evidence that it is a neurological reaction in my brain when I get exposed to chemicals. probably unrealistic to think you'll find a doc who gets that piece of it.

Deb

I brought my sister in with me for...emotional support...But once again, after talking to the neurologist for about...5 minutes...I shut down.

I began by saying that the diamox dosage was too high...WAY too high. I was getting cramps and all sorts of nasty feelings. So she said lower it. ...yah, no **** sherlock! Then I went on to telling her about the hospital visits, and that I needed something for pain...something stronger than Advil and Tylenol...I cannot keep taking advil and ty like I do every day.

She said "dont take it"....it will cause a rebound headache. MY HEADACHE NEVER GOES AWAY!!!! BAH! She gave me some samples of....Axert...but I cant take more than 8 in a month...8. **PULLING MY HAIR OUT**

then the weight thing...ohhhhh my sister snapped on her for that. The neuro said I had lost a little bit of weight...but I need to be 130...I WILL NEVER BE 130 FREAKING POUNDS! I am "petite" but I wont be skinny...ever. I've already lost 230...like come on!!!!! DO NOT SAY THIS HAS ANYTHING TO DO WITH MY WEIGHT!!!! IT OBVIOUSLY DOESN'T!!!....


This neurologist is going to drive me nuts!!!! I was diagnosed in April...and I just got back in to see her...she still calls the disease pseudotumor cerebri...which is another name for it, I know...but she seems so out of the loop when it comes to this!!! "Ohh its probably a migraine"...THAT DOESN'T EVER GO AWAY?!?! ARE YOU FRIGGIN KIDDING ME?!?! We that have IIH know the difference between a migraine, and the IIH headache. ....I just wish my neurologist did...



ugh...I hope this topamax works. I'm looking at quitting my job, or taking a leave due to the pain I am in...Its hard to look at computers and be on the phone all day with this.....But I cannot quit...I need this job. How else am I to survive?!?!

ugh...I just want to cry. IIH can suck it! I am so frustrated!! Its two steps forward, and one back.

Im hoping the topamax doesn't cause me any issues....The diamox sucks...and I hate it. I just want this all under control. This is so ridiculous!

I find Lasix works pretty well.....at least for the brain fog.
you should definitely have some Vicodin on hand for when the headache is bad. what is wrong with these docs?
hang in there sweetie. :(

I'm so sorry you're struggling! I know weight CAN affect IIH, but they still should be able to manage your symptoms. I actually did end up w/ rebound headaches from all the over-the-counter meds I was taking (Excedrin Migraines w/ the caffeine shot was only thing that helped)..weaning off them was a nightmare, but short lived and definitely worth it! They also tried to diagnose me w/ migraines and chronic headaches, but it always ended up being either high or low pressure. I would definitely try going w/o the over-the-counter stuff and talk to neuro about changing meds. I know it's frustrating and overwhelming, but don't give up! I also don't tolerate meds, so ended up w/ lumbar shunt..you still have plenty of options!!!

I hope you find relief soon!

julie

How awful. Why isn't your doc listening to you?? Maybe she just doesn't have experience with IIH and is treating you for Migraines and taking a swat at what she has read about IIH.
Is there any way you can change doctors? That may be the only chance of getting on with a treatment plan.

yea i feel your frustration my doc is really nasty about my weight, i'm not stick thin but that because i struggle with anorexia... ive told him this and he doesnt listen.... i think part of the exam is on being a total jerk

The side effects with Diamox kick in at fairly low doses I started to get side effects as soon as I started taking it. Pins and needles, tinnitus, hearing loss. I was taking 1000mg a day. My Consultant told me to spread my tablets out throughout the day, this did help, I took mine 4 times a day. I was put on Toprimate because I was struggling with the Diamox and with headaches. Toprimate is a migraine drug but it works for IIH suffers as well. I have been taking it for 5 weeks now and all the side effects that I had with the Diamox have gone. I have had a few with the Toprimate but nothing major, bit forgetful, my headaches have got better to the point where I need very little pain medication, only on the odd occasi,on. I am not up to my maximum dosage yet. I would certainly consider trying this drug and may be spreading the Diamox out if you have to take them together.

As for the Consultant I would consider if possible trying to see if you could get to see another one. Hope this helps.

I've tried having my neurologists changed...Thats a year wait. I see my neurologist every three months, WHAT A JOKE. Considering my family physician will not touch my meds, and wont give me anything for pain, so its all about Tylenol and Advil...

This topamax had better work...Its my last hope

I just don't get it...Its like they see IIH as a sinus infection...."ohh It'll clear up. Suck it up". And my weight...seriously. They don't seem to be bothered with the fact that I have NO appetite, and am losing weight by doing nothing. My body feels like it is going to give out completely...

I had to quit my full time job today...I cannot keep up, and my bad days are outweighing the good. I just....I dont know what to do anymore.

ugh Jenn, so sorry. can you apply for disability? sure sounds like it's indicated.

Adeline, I'm a doc and I can tell you that YES they did socialize us in medical school to think that "hysterical" or emotional women are just nuts. it's called Somatoform Disorder and it is a complete JOKE. there is something about humans that can't have empathy for things we cannot see objectively. this is one of the major reasons that no one understands us or takes our illness seriously, and why so little is known about it. if this happened to MEN more often, don't you think they would understand it better? they sure understand erectile dysfunction better than IIH, and that won't kill you either.
:Angry:

HAH!!! you are so right there, its ridiculous that they just do not take the time. Acerouseme: is there anyway you could do some work from home in case you have a bad turn? id definitley reccomend you applying for disability benifits like sofiasmom said. I just spoke to them on the phone and they said if you have difficulties accomplishing everyday things then you are entitles =]

Chin up and keep smiling i know its hard.

I wasnt able to get hooked up for home work...I had to resign. which made me cry. Which gave me a headache....So now I go tomorrow and talk to my doctor about disability....god I hope I can get some sort of help. I'm gonna need it

If it gives you any comfort I think Topiramate has really helped me. I am slowly increasing the dosage as it has made me cry a lot initially but that is getting easier. I take it with fursomide and its a combination that is working for me. I haven't had any of the sleepy or forgetful problems that I was warned about - in fact I am functioning much better because I'm in less pain. Hope that gives you some hope that it does work for some people and that you could be one of them. I have my fingers crossed for you.

i am 260 lbs,,and doctor told me to lose weight also,i now i should cause 260 lbs is not good for my health,but i had 3 kids,its hard to get it off tho,lol

Yes Tanya, losing weight is never easy, let alone with 3 kids. That is a full time job in and of itself. Perhaps some small changes in your diet may help. I know that I do much better when I cut out all soda, even diet ones, and just drink ice water. Portion control has always been my biggest problem. It amazes me to measure out things, like breakfast cereal, and see what an actual portion size is. WOW! That can save a bunch of calories. Keeping a food log helps too. Funny how it makes us take a second look at what we are eating when we have to write it down. I hope you are able to find some small steps that will work for you too.

I am so sorry... when I read your posts, Its like Im reading my own story. :( I feel your pain, I really do. I have tried the topomax, it really didnt help me much. I am now on the max I was told for diamox 2500 a day. Its upsetting my tummy :( I have a drawer full of MIGRAINE meds in my vanity that DONT HELP and are EXPENSIVE. the only thing that has helped my pain Is nacotic painkillers. I dont want to take them as much as they dont want to give them to me, but its the ONLY thing that makes me feel human right now. I feel like she keeps pusing these migraine meds on me and when they dont help oh here try this migraine med, and I have to beg for a little bit of relief in painkillers. I have never been one to take them until this all started. I hate even asking let alone begging.
I have also been worried about loosing my employment, either being fired or having quit because of it being too much. thats so scary. I am so sorry ;(
Oh, and who doesnt want to shed a few pounds!?? Im sorry but this pisses me off just as much as the migraine med thing, I have TRIED so hard to loose some weight, Im not really overweight but if it hels it helps... I have to quit the gym for weeks at a time because I can hardy work and be a wife let alone work out... please dont beat yourself up over this. Be as healthy as you can be, and when you feel up to working out do, but right now you dont need this added stress.
hang in there hun!!! when I am having a bad time this site always makes me feel better knowing there is someone else like me. Im always here!!

Well, I am off the Topamax. I almost killed myself on it...it just made me too irritable, I wasnt eating nor sleeping. Back to Diamox...and the crappy part is, my Neurologist is 30 minutes away...and is always so keen on blaming migraines for everything.

And I cannot get any sort of assistance because my boyfriend works.....i mean, really?? REALLY CANADA??? You'll give alcoholics money to drink away, but for someone that WANTS to live indoors, in a safe area you cannot help??? COME ON...BULL!

I was doing great for about a week...once again the tinnitus is back, and I am just...back to square one. with major panic attacks and horrid pain everywhere. My back, my joints, everything....


And I have no choice but to work through this...working full time, taking only advil for pain...avoiding everything I used to love doing. Oh and working out?! yeah...Thats easy when everything hurts....

WHY DO DOCTORS NOT UNDERSTAND HOW HARD IT IS? :(

no one understands how hard this is.
unless you experience this level of disability yourself, you don't really understand.
I remember in early days getting better and then getting worse again and realizing that even I had forgotten how bad it was, what it was really like.

and the docs are socialized to think that emotional women are overdramatizing it and we are just a little nuts. and also to be on the defensive for anyone who is drug seeking. they tend to get attitudes about their patients rather than cultivate empathy; it's hard to find a good one.
the best way to deal with this is to be as rational and calm as possible when you go in. present a logical argument and they will be hard pressed to go into their "this patient is just crazy" box. write everything down, keep a diary, describe your symptoms in detail but unemotionally, bring in reams of paper with abstracts from Pubmed to support your questions, and they will have to pay attention to you as a serious person.