as for fighting for good heath care for me it was a full on up hill battle i heard everything from i was to young to have IIH, and that my eyes looked normal enough. WTH is normal enough?( this is when my vision would black out at times when ever i stood up but since everything checked out fine and just a little swelling i looked normal enough and they didn't know what was wrong with me) It wasn't till i had a LP and a OP of 31 did some doctors care and some after that still acted like it was no big deal and nothing huge. And i can't forget how i fought tooth and nail to get that LP and MRI. And i saw over 19 doctors from june 2008 till july 2010 and getting dx all of them that i told i had the worse headache of my life and woke up the next morning with wooshing and a pain in my left flank. It wasn't till my eye sight started to go that one doctors cared.

and MM3 do you know anything more about muscle pain that can be caused by CSF leaks? I haven't really ever heard someone talk about that but it's kinda what i believe happened with my left flank ( or something like it) It's a pain i had for 2 years and doctors could never figure out though i did have an MRI and a CT scan once of my spine and they didn't find anything ( at least nothing they told me about)

First of all, I am new here and this is the first time I am hearing your story. I am SOOOOO sorry for the hell you are living! I wanted to cry when I read your good PCP passed away. I definitly know your frustration and I am so sorry.

I was diagnosed during my 2nd pregnancy. I had LP's every 6 days. After delivery I started on Diamox and Lasix. During pregnancy I was on Norco and Dilaudid for breakthrough pain. I luckily had an OB that new what IH was. I actually had headaches during pregnancy which were treated by my PCP by oxycodone without tylenol. Then I was diagnosed with Gestational Diabetes and went for a dialated diabetic eye exam and they found my optic nerves extremely swollen and refered me to a neurologist. I was told to lose weight. which is hard to do when pregnant for one and for two, I was not even at my highest weight so I was pretty confused at the onset of it. I have since stopped taking all the meds as I have had 2 failed VP shunts and now a LP shunt I dont think is working but they are telling me to wait more time to see if its gonna work. It has been 3 weeks and I am sick every day. Dizzy and lightheaded, floaters in my vision, getting up outta bed just to go to the grocery store I cannot do.
I hope you can get this figured out, I so know your frustration.

I was diagnosed in Aug 2011. I was having vision issues and ent to my optometrist to have my eyes checked. She noticed a slight abnormality in my left eye and that combined with my migraine history warranted further attention from an opthamologist. A trip to the opthamologist found a papillaedema in my left eye. An MRI the following day ruled out any mass or tumor. A neurologist prescribed diamox. I now take 2000 mg per day. I also have converted to a vegetarian/vegan diet in an effort to confront this condition. Since changing my diet I no longer have headaches. I suffer from visual obscurations when I change head position or change pressure, but it's not as bad as it used to be. I now have an NO at the University of Iowa who has a good understanding of this condition and is willing to work with me.

I was diagnosed in Aug 2010 after years of headaches. Symptoms were papilledema, headache, floaters in vision, halos, exhaustion, noise/light sensisitivity, depression/anxiety. Treatments were diamox (which then required potassium and welchol), fiorecet with codiene, celexa. Then VP shunt in 7/11. Now only treatment is advil or percocet for headaches as needed. The NS says my prognosis is good. Pain meds I've tried (most didnt work before the shunt): advil, tylenol, lortab, percocet, tramadol, dilaudid.

WHEN YOU WERE DIAGNOSED: I was officially diagnosed in July of 2011. I went to the optometrist for a routine eye exam and she found a problem with the fact that I was seeing a curve in the letters. She sent me to the opthamologist who found paps in both eyes. I was then scheduled for a CT Scan which was clear of any abnormalities. My opthamologist sent me to the NO who ordered a MRI and a LP. My OP was 32 and my MRI was normal.

WHAT YOUR SYMPTOMS ARE: I began having symptoms in Feb of 2011. My symptoms included pressure headaches (feeling like my brain was being squeezed), paps (letters have a curve in them ), and fatigue.

WHAT TREATMENTS: I'm currently on 2000mg of diamox and RX potassium. I've had a lot of dehydration issues due to the high dose of diamox so I've prescribed myself at least 28 ounces of coconut water on top of the 64 ounces of water I drink daily. My NO suggested weight loss which seems to be the common recommendation with this condition. So far I've lost about 20 lbs. I still have a long way to go before the weight loss will show any signs of benefit.

WHAT YOUR PROGNOSIS IS (Is there any hope you'll get better): I'm trying to stay positive and hope things will get better. I know my pressure is still high and that concerns me. I'm afraid I may have to face the thought of shunt surgery one day. That terrifies me.

AND MOST IMPORTANTLY, WHAT MEDICATIONS ARE YOU ON FOR PAIN RELIEF? I am one of the lucky few I guess, I rarely have any real pain with my condition. I have a few headaches but it's nothing a advil can't handle.

I forgot to add the ringing in the ears. It doesn't happen as often now since I'm on such an high dose of diamox.

My name is LeaAnn and I am brand new to this but I read your post and how I feel for you in your situation. So my dear here is my story:

I am 23 years old; I was diagnosed in March of 2007:
My entire life I have had vision problems including near-sightedness and astigmatism. I noticed in Jan of '07 dark black spots in my vision with bothered me. My pediatric opthamologist told me I would be blind by the time I was 20, well I was 18 then!

I seen two opthamologists and only the second noticed a problem with my optical nerves. They were swolllen. The first did no recognize this because I naturally have small nerves. He referred me to a nuerologist suspecting hydrocephalus.

The initial consultaion, she asked me a series of questions and it wasn't untill then that I was able to put two and two together.
my constant head aches and migraines were not due to stress, infact they were accompanied with an annoying ringing noise in my ears that no one else could hear. "Bubbles", and "static" in my vision, pain in my eyes and the back of my head, Dizziness, tingly feeling in various areas of my body, vertigo, bladder incontinence. (Please excuse any miss spellings)

I underwent a MRI and a LP. My SPC was around 20. Which from what I understand isn't extremely severe but still too high indicating PTC. I was instructed to discontinue my birth control. My nuerologist placed me on Diamox. However the side effects where too severe, incuding extreme and unbarable tingling sensations all over my body from head to toe, twitching of my eyes, and what was the worst effect of it was that is seemed to temporarily paralize me. I couldn't move my hands, mouth, or feet. They would lock up in the wierdest way. I couldnt possible drive or work or carry out a normal life.
I was told that my condition was not severe enough for any shunt. So my only option for treatment that I am aware of is LP semi-anually / anually.

I am given Fioricet/ Ibuprphen 800mg. / and Hydrocodone for pain management.

I do not have health insurance so I have been with out treatment for nearly two years now. I try to do things on my own to alleviate pain such as eating right and maintaining a healthy weight as to not add any more pressure to my head. I take excedrine beyond the reccomended dosage when needed.

I hope this helps. I wish you all the luck!!!

Thank you for the responses! Can't write much now as I'm not feeling well. For those of you who mentioned you didn't know me as a member before you can click on my screen name (under picture to left) and should be able to pull up all my old posts (there are a lot) which date back to March of 2009. By reading some of these you'll find lots of info about IH that I learned along the way. My initial pressures were 400, but, my first LP was done by a young resident who didn't know what he was doing and said my OP was 290. In the beginning I didn't know I had secondary IH and thought if I lost weight it would help. (wrong). Funny thing is I can look back and see how reluctant I was to be treated with narcotics...in fact, I asked if there was anything else. But, with sulfur allergies and nothing else to help (because weight isn't an issue and papilledema isn't a major issue), I'm kind of screwed. In the beginning I had a great deal more hope. I'm kind of like TJ and Cath in that way, (my old friends)...we've been doing this a long time, we've tried pretty much everything...and we're still kinda screwed. Happy reading! LOL! I'll write more later.

(P.S.: For the woman whose NS is asking you to take regular doses of Ibuprofen...remind him that IB causes water retention and likewise has been linked to causing pressures to rise. Not a good idea.)

For more info....including information about the neck and back muscle problem IH can cause....please go to the www;IHRFoundation.org website. Under symptoms...and again under other symptoms you will find this information. Thanks.

MM3

Thank you!!!!!

Hi Krystyne/MM3

Diagnosed: July 2011 after 4 months of seeing a bunch of docs that had no idea about IH! One nuerologist was actually googling it Right in front of me!

Symptoms/Treatments/Meds: In Dec 2010 I had this vice-grip type HA,Severe L ear pain, hearing sensitivity and whooshing of my heartbeat in my ears. Figured it was stress, took OTC pain meds.

By Jan 2011, had the above symptoms then L neck pain, like a crick in your neck but diabling so I couldn't turn my head. Went for a few messages but they hurt worse. Hot packs, OTC meds.

These symptoms continued to worsen and by April 2011 I started smelling things that weren't there. Smoke, sweet smelling several times per day that no one else smelled and hearing sensitivity worsened. Went for MRI, flattened discs, empty sella, etc. Scheduled to see nuerologist but move appt forward because I had two episodes one night of while sitting down, extreme dizziness, smell of ammonia very strong followed by an inability to move my body. Saw a HA specialist who insisted I did not have paps so therefore, no IH. Tried Maxalt, Treximet, Dexamethasone, DHE45. Went to NO, she said probably IH need LP and started topamax and lasix.(allergic to sulfa!).Developed HTN and insulin resistance.

Finally,with symptoms worsening as above, plus blurry vision, sometimes unable to read lines due to fogginess, double vision and seeing clouds in my periphery, I had the LP-26 cm was the pressure. NO said probably 3rd occurance of IH when I had HAs years ago and Migraines.

Topamax made me crazy so it was d/c ed and G occipital nerve blocks tried. MY very 1st 8 days straight of no HA!!!! Loved it! Started back on topamax very low dose, again mad me crazy! Symptoms continued, so I recieved two more, the second didn't touch me, the third did.

Now I am on Pamelor(nortriptylline). Gradually increased dose but the side effects have been disabling. Dizziness, Thirst, severe constipation, rectal bleeding, decreased libido...I am currently weaning myself off as I have neuro appt tomorrow. I take Motrin for pain only if I am at a 10/10 maybe 1-2 times per month. I have constant HA and dizziness continues. I am Nauseous, have blurred vision and Off balance much of the time. I live in constant fatigue with many days being unable to get out of bed.

Prognosis: Who knows? I pray alot for my doctors to stay up to date on this condition so One day perhaps they can help me feel better. I hate the way I feel. I hate what kind of person I've become.

I hope reading all these helps in some way. They are all so interesting to read...
Love to all
Nancy

Diagnosed in 2009.
Ringing/Whooshing in the ears, Heartbeat in my head, Dizziness, Ataxia/Vertigo, Eye swelling, Flashing lights, Light sensitivity, Vision Loss, Zoning out, Tiredness, Constant Headache (at a 7/8 at all times), Vomiting/Nausea, Memory Loss, Sound sensitivity, these are the ones that never go away.

Treatment: Diamox 1000mg Diamox/daily
as well as LP's when I need them

Looking into the VP shunt.

Unfortunately all my life no medicines like to work on me (they usually have to give me 8 numbing needles at the dentist and I can still feel the pain, 10 numbing shots for the LP and it doesn't go numb, 5 drops of dilation for my eyes, etc.) so I just use Diamox and it helps barely.

So far I've found nothing that helps except LP's if they bring it down (for about 6hrs), sunglasses 24/7, and heatpads, oh plus peace and quiet.

Nancy:

Since you're the only other person who've I've heard mention this I thought it was important to touch on....and that is....the smells. Before I was diagnosed I had this problem too. It was so embarrassing. I was an Assistant Building Manager/Office Manager for the Government prior to my diagnosis...so what happened in my building...a building where "Senator Clinton" once had her office...was up to me. So...when I smelled electrical burning smells or "smoke"...I asked others to check and confirm if they could smell it too. But, nobody else could smell it. Right after I would get these smells, I would have what were called "absence seizures." This is where your doing or saying something and then everything stops....you just stare off midsentence for a few moments...or you can hear others talking to you but you can't respond...your body just shuts down. I later learned that these smells were my brains way of alerting me that a seizure was coming on. Scary. You should talk to your neurologist about that.

Also, Motrin is essentially Ibuprofen...so taking it once a month when your pain is bad may be okay...but, I don't suggest taking it all the time. I used to take Excedrin Migraine and it helped sometimes. (Have to also be careful though because you can't take more than two in a 24 hour period.) And...here's another suggestion for some of you who may only get high pressures once a month to this degree. When you feel your pressures getting severe this way...Try Diurex. This is an over the counter water pill. Ironically, prior to my diagnosis somehow my body knew this is what I needed. I tried it several times and it helped.

Unfortunately, my pain starts off at a 4 or 5 everyday and if I'm active my pain ends up at a 10 everyday. If your able to keep your pain from only getting to a 10 once a month I'm wondering if therapeutic lumbar punctures might help. Like I said, for me...my CSF replenishes quickly and within 24 to 48 hours my pressure is back up. But, maybe this would work for you?

I think we all wish our doctors would read up on IH. My new doc is willing to do the research...so I guess I can't ask for more. I guess now the doctors are concerned I may have developed Chiari Malformation. God I hope not!

MM3

Diagnosed 10/2011 with Paps at routine eye exam (no symptoms at the time, though I had neck head pain- right side only- for a week prior to eye exam). 11/2011 I got IIH dx at ER after MRI and LP of 33. I went to ER because of pressure (eyes, ears) and I knew something was wrong. ER didn't know what to do with me. They were more concerned with my stroke-range blood pressure. I'm on 2000 Diamox now (will be going up) and I still have stage 2 pap. I'm on no other meds (even over the counter). I still have the same head pressure, eye bugging, ear ringing (not whooshing), ear pressure, neck pressure. An odd one for me is that my knees are really painful - like sciatic pain - getting up from chair hurts.
I'm still going with the prognosis as "good". I was hoping that my paps would be better on this last visit, but at least not worse.

MM3 - what you are doing here is very good. As a community, we know a lot more than the individual doctors ever could. The data to better understand IIH is here in us and we are in the position to learn and teach.

Hey Khrystine,
So glad to hear from you, still think of you and appreciate how you have been there for me to help me out and you know I would be here for you to help you out if there is anything I could ever do. I hope you and your family are well.
DIAGNOSED: January 2009
SYMPTOMS: Chronic headaches and migraines (daily pain ranging from 8/10 - 10/10), nausea, dizziness, dizzy when bending, eye pain, headaches change with pressures in weather, slight whoosing in ears yet.
TREATMENTS: (2) Stents in L&R transverse sinuses with balloon angioplasty, 3 Botox treatments for migraines, daily asprin treatment to think blood due to inherited blood clotting disorder, tried trigger point injections, Topamax, Nortriptyline, Diamox, Visual fields, etc...
PROGNOSIS: Right now just heard back from Mayo Clinic in Rochester Minn. that they would not accept to see me because there was nothing they could do for me so at this point it looks like a chronic condition that I will just have to continue to live with ( The IH, and chronic headaches and migraines)
MEDICATIONS FOR RELIEF: IMITREX: I am alllowed to take this 2 times (2 pills) a week 4 hours apart.
IBUPROFUN. I am allowed to take this 2 times (2 pills) a week, 4 hours a apart.
I am not allowed to take anything else...so I just tough out the pain, I may not always be able to continue to do this however. It has significantly impacted my life outside of my house.

MM3,
I just read the post you made th Nancy about the smells, that is so interesting. . . I am so sensetive to smells that most days I spending eating foods with seriously "no smells'....its a pretty hard thing to do but if they do it just makes me want to vomit. Its made it hard to eat with my family or cook for my husband but we are managing around it. I know it has something to do with my headaches/migraines or even the IH I suppose but its awful to deal with at times. Sometimes if someone is cooking I leave the room and go to another part of the house entirely just to avoid feeling sick. Can life really be like this?
Mandy