I cant take much more of this!!!

STUPID DOCTORS! My neurologist saw me in her office on the 15th, and she DIDN'T EVEN LISTEN...Even after I told her about my many hospital visits, and how I almost died on the Topamax. ( But my gp did send a letter of reference to a different neurologist...lets hope I get a response ASAP)

She is CONVINCED that because I have sensitivities to bright lights/sun, loud sounds or high pitched squealing, and certain smells that I am not suffering from a "typical IIH" headache..she thinks its a migraine. Yeah okay, because i have a migraine EVERY DAY?!?! Now she wants me to get botox in my neck and shoulders. for 300 bucks a vial. I cant afford that!!!!

I DONT HAVE COVERAGE, because I cant work because nobody wants to hire me because of my disease because im a liability...oh but I cant get on ANY social assistance because my boyfriend lives with me, or because my case isnt "severe". Oh really? Its not SEVERE??!

I have gone to the hospital a whopping 22 times since I moved to the city...with things such as transient blindness, or of course the headache accompanied by vomiting and dizziness. And I cant eat certain foods, I have to watch EVERYTHING now, and my health has just gone into the crapper.

I cant go and do normal things like kids my age do...I cant go to the movies with my boyfriend, I cant go to the mall for very long or im down for days with a headache, I have to watch how long I work out or once again...headache, and I cant sleep because my head hurts. Oh and this disease is great for my anxiety.

Do any of you have certain sensitivities?

What about those on Diamox? Have you ever had cloudy urine? or muscle cramps?


I feel like Im running out of options

I am new here, but I am not a stranger to the feelings of hopelessness and thinking that no one understands. PLEASE DON'T GIVE UP!!! There is always hope, and I just keep reminding myself that, as crazy as this disease is (changes hour-to-hour with me sometimes), it can get better. Life is an adventure, and IIH has simply become part of it for those of us on this board.
I know this is going to sound corny; but I was feeling really low when, one day last week, I went to lunch with some friends. We ate at a Chinese buffet (I had salad and rice because I have developed a lot of food sensitivities too). When I got my fortune cookie at the end of the meal, I almost cried. The fortune read, "He that can't endure the bad will not live to see the good." I can quote it because I keep the fortune in my wallet.
Anyway, I am on Diamox 500mg 2x/day. I have had a lot of the side effects. I do get muscle cramps and had a couple of nights with horrible stomach cramps. My recommendation is to eat some potassium rich foods to help. I eat a lot of bananas, drink orange juice, and eat broccoli at least every other day. I think grape juice would be a good source, but I had some flare-ups after drinking it which made me cross it off my list. I would mention the cloudy urine to your neuro, but my urine is never clear. If I am not mistaken, I think really dark urine is the warning sign that gets doctors excited, at least as far as urine consistency goes.
As for sensitivities, I am developing several. Certain smells will set me off. Scented candles are a huge trigger. Zucchini , of all things, makes me queasy. I stay away from cheese, cut out as much salt as I can, no sweets, no caffeine, no super-spicy foods (heartburn is a killer for me on the Diamox), and several cleaning chemicals seem to make me sensitive. Oh, and I dread the sun. I cannot be around loud noises for long, either. There are others. I would recommend keeping a log of foods that you can and cannot tolerate and write down any triggers. I notice mine change sometimes. I have added and subtracted items from the list, as that crazy old IIH changes over time. And, like you said, physical activity can definitely be a trigger.
I guess what I'm saying is that I feel your pain. IIH has turned my life upside down. I have been to the ER 8 times in the last 6 months. My eyes change constantly and are my main issue, along with bouts of nausea. My girlfriend broke up with me, I don't like protracted social situations anymore due to noise and the fact that I get tired so easily, and people do not seem to understand that I am really and truly not feeling well.
OK, so after all of that, it sounds pretty rough. But, you know, the thing is, I still believe that it can get better. Lean on your boyfriend. Really and truly enjoy the things you are able to do. I have been choosing one activity a week that I know I can still do and then I find someone to share it if I can. This week, it is a simple walk around the neighborhood. I went with a friend of mine, and we just talked about something that was totally unrelated to health or anything that was negative. We have done the walk three times so far this week. It is fairly short, but it is something that says "I am still here, and I am not going to give up." I know I cannot relate to all that you have been through, and you have certainly dealt with IIH longer than I have. But I do grieve for my life before all of this started happening. All I can do is offer my support to you. When I found this group, I stopped feeling the loneliness I had felt for weeks on end. Just remember, we have each other.

Hang in there.

I'm on topamax and don't get any of the same side effects you describe - maybe some of the others will experience something similar. However it does really affect my moods and make me very miserable.

IIH seems to be so misunderstood and its so frustrating when you so desperately need help. Its hard when you don't feel up to it put keep standing up for what you believe. You know your condition inside out - after all you live with it every day.

There is hope for a better life. A few months ago I would never have believed a normal life could ever exist with this horrid condition. It can with the right clinicians and support. Keep fighting and believing.

I was diagnosed with IIH in 1999 and have experienced all of those things, so you're definitely NOT alone. It is definitely a process of adjustment and grieving, so it's important to celebrate the little things. It's not always easy and the worse I feel the harder it gets, but that's why we're all here.

I did have to take Potassium supplements when I was on Diamox and Lasix because I had horrible muscle cramps. I also constantly had bladder infections and ended up with Interstitial Cystitis, so I would definitely follow up with your physician. A log is a great idea..I document symptoms, medications, weather, food, and sleep when I'm not feeling well because they all affect me. I also try to use stickers, markers, or glitter to jazz up my good days, so they're easy to find. It's so easy to become isolated and defeated with this disease that I need the reminders, and I used to work with children so also need little rewards..lol.

I honestly think the most important thing you can do for yourself is to keep looking until you find someone that hears you! I worked with an awesome diagnostician at one point and he gave me the best advice ever..no one knows your body better than you!!! He totally believed in me and just kept making referrals until I found someone that listened. It sounds like you have a supportive GP, so hopefully you're on the right track.

I hope you're feeling better soon!
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Julie

Thanks everyone for replying.

While I do tend to be positive, its tough when everything seems to be gathering up, and exploding in my face. I'm 23, and I want to enjoy my life the way I used to. I HATE having to say no to my boyfriend wanting to take me to a movie (we went and saw Ted...HUGE mistake. I was down for two days afterwards), or go to the mall so he can spoil me. LOL When I go to the mall, I have a plan of action. And a map drawn.

I've been having a hard time all around. I just recently found out that my family thinks I've made up the disease. And they're constantly telling me to "suck it up". I've shown them the pamphlets, they've heard about it from doctors, and yet they refuse to believe that my "headache" is that bad...I can be dramatic yes..But i am NOT being a drama queen when it comes to this pain. I pierced my own nose, and belly button and im tattooed! I have a HIGH pain tolerance!!

I finally broke down to my counselor and straight out asked him if I was truly crazy. He laughed, and told me that if i feel it, its real. And not to let ANYONE tell me different. Not even my family.

I should be on some sort of potassium, but I hate asking my doctor about how much I should take and such because Im there all the time. She is an amazing doctor. This woman has held my hand while I cried, hugged me and told me to keep fighting. And she wont let me wallow. So its nice lol. She is working with me closely, and trying to help me figure out the next steps I can take. I am so glad she has gotten me a referral, a nutritionist, and a counselor...all in the same building.

I am going to start keeping a log of all of my symptoms, and chart them. I've come to know the warning signs of when the headache is about to go from a 10 to a 500 so its a start. I am SO SICK of having the symptoms all the time. I had to go through the "URGENT CARE" process tonight that my doctor had set up for me. The headache had become unbearable...Thats what I get for going to the mall with my sister.


Another question for you all...about symptoms. When you sneeze do your wrists hurt? Or does the dizziness get worse? What about aching in your lower mandible?

Sneezing is THE worst! I get really dizzy and my headache spikes to where I almost pass out. I haven't noticed my wrists hurting, but my jaw and neck ache after I sneeze.

I have noticed cloudy urine, it seems to happen when I'm having a really bad day. My trigger foods are not constant. I think the hormone cycles of the body might affect which foods trigger flares when. Now...... if only I could track and collate, organize and snyc cycles and keep the top of my head from blowing off, I could beat this ih into submission and kick it to the curb. In the meantime, I guess weall just keep plugging along.

I am thankful for all the stories of our lives we share here. The joys and sorrows, help and hope keep me going, knowing that I am not alone on this journey. Thank you all.

I am taking 10 MEQ Pot Chlor (prescription) to go along with my Diamox. Without it I get leg cramps. I, too, eat bananas and try to limit salt intake, drink lots of water (and yet still do get cloudy urine often).
Keep pushing for a different neurologist. You have beaten yourself up enough having to see this other one. Time to get someone who is in your corner.
It may be a while before you are able to get the old "you" back, so try to go with the flow, know that your body is changing and keep fighting to get better. BTW, boyfriend sounds like a real keeper for hanging in with you. Still think you need to become snowbirds and get some U.S. medical help. ;)

Thank you both for replying.

I am SO GLAD I am not alone. Some days, it feels like I am but I know I am wallowing in my own pain, and misery.

I got a job today! I will be working from home and I can control my own hours, and the triggers. So its perfect for now. FOR NOW. I dont plan on being stuck at home all of my life. I do have plans on going to school.

I am glad I am not alone with the cloudy urine. I was really freaked out about it. It seems like I have new symptoms popping up all day. So...I've started a log. It will be something to show the new neurologist.

LOL Wylee- Im still thinking about it. My boyfriend wants to send me to the US to get some help. He definitely is a keeper. Not many men would want to go through what he has in the past 13 months we have been together. Through all the ups and downs, hes never left my side. I think its because I can cook, but he says its love. lol


Okay...plan of action:

LOG BOOK
NEW NEURO
Botox? (can they put some in my face too? hmm :p)
monitor symptoms and chart...
cut back on chocolate
remove uterus (no periods means less headaches..lol)
VACATION

So get this...I went to the hospital last night because I was having a MAJOR attack. transient blindness and all. So my boyfriend took me in (we walked...our cab didnt show), and went straight to triage...The lady asked what was wrong, and I told her I was having a major IIH attack. She asked what "IHA" was, and i corrected her, giving her the scientific name...

She then decided to go on saying "its going to be a long wait. There are people here that have been waiting for HOURS, and Im not about ti bump you in before them."

I was bawling my eyes out, and telling her "I just want help. It hurts", and the cow..sorry woman... would NOT even take my name, or triage me. She walked away, looking at some computer and talking to a co-worker, and then came back and said "well, I'm going to go and triage them, since you cant decide if you want to be admitted or not"

And then she walked away. I begged my boyfriend to take me home, since the woman wouldnt even give us the time of day...He walked me home, and I was bawling.

SINCE WHEN IS A COMMON COLD MORE IMPORTANT THAN WHAT I WAS GOING THROUGH?!?! She didn't even take my name, she heard "IIH" and assumed I was some sort of faker with a minor headache. I should have gotten a tap done last night. My headache is still going, and I just want to cry, but we all know that crying makes the ache worse.

babe in the sasme boat as u right no]w my AE did pritty much the same to me. my thought prays and hugs are with u x good luck babe i hope u can get them to listen to you x x

Sweetie welcome to the log journey that iih.. young will meet lots of ill advised people that great what they don't know as just a headache and treat you as a drama queen...hugs but we all here if you need to vent or rant.

28th of november today and actually feel like i am gonna die my6 head feelsd like its gonna pop my ears r leakining some kind of water and i cant get to the hospitail AHHHHHHHHHHHHHHHHHHHHHH