I was dx in March 2011. Routine eye exam showed swelling of the optic nerves. From there I was sent to an NO who confirmed the paps. He sent me for an MRI (normal), then a lumbar puncture (OP was 31). Prior to dx I had headaches, neck pain, and ringing in my ears. I thought they were all sinus/allergy related.

Symptoms:
-Headache (anywhere from a 1 to a 10, depending on my day/environment)
-Floaters
-Constant tinnitus (ringing), and heartbeat when pressure is high
-Sound sensitivity (I hear things in the high frequencies that most people don't)
-Neck and back pain
-Some memory issues
-Sometimes lose my words
-Fatigue (this has gotten much better over time)
-Periodic Trembling
Confident that these are from Diamox:
-Tingling in hands/feet
-Nausea
-Stomach issues

Medication:
Diamox 500Mg Sequels (currently at 1500mg/day)

Prognosis:
Seems to be good. I am not very overweight (may need to lose about 5 pounds). Mine is still Idiopathic, as there were no other factors that could have led to IH for me.
My NO (I only see an NO at this point) is pleased with my vision (only peripheral was affected and is improving), and the swelling of my nerves has gone down. If my HAs and ringing persist, our plan is 1) to wean me off Diamox, 2) for me to get another LP to see where my pressure is and 3) for me to see a regular neurologist if it is still high.

My quality of life is good/very good. I know that this is not typical for most IHers. I am able to work, go out with friends/family, run errands, do light exercise (walking), etc. At times I am in pain, and I'll give myself a pass. But for the most part, I try to stay positive and enjoy each day as best I can.

Best of luck to you!
Marci

I do not know for sure if it is idiopatic, some of my doctors think it is secondary since my hormones are all screwed up. I am hoping the weight loss will do the trick, i believe I am going to lose another 15-20lbs and then call it a day. So far the weight loss has not given me any reason to think that it has or will do anything. Meds and def. my shunt have done much more for me :) thank you for sharing!

LoL ohhhh how happy i am to have left him. He diagnosed me but the waiting 4hours was aweful and stressful. He is the only only NO in Rochester now. I was told a female NO just left Rochester General . These drs in Rochester can be a freaking joke. But i must say he did handle my sickness accordingly and iwas dx in 2 weeks lucky me. But i totally understand what you mean. I just left him and now have to see a neuro and opthal at RGH... SMH

Diagnosed June 2011
Had runny nose for 2 years and thought it was allergies
Would drip a lot, even when bending over, during sleep. Eventually so much that it would pool. Had "hole" in the head, CT showed facial thinning of bones due to high pressure and the hole. Had CSF leak. Flown to Seattle to specialist team for surgery. Had surgery. I suddenly remembered how I felt before the runny nose issues. I had forgotten. :( I had some serious issues prior to the CSF draining, I had gained weight and was miserable. With the runny nose I had lost weight had a trainer and ran a 10K and 1/2 marathon. I was becoming healthy...then all hell broke loose.
So after surgery symptoms returned:
Headaches
numbness and tingling in legs, hands, feet, and arms...and face
right eye twitching
spelling issues
neck pain: I used to have times where the back of my neck felt like I had bubbles in it going up.
seeing floating stars
foggy eye sight
low eye sight
my peripheral fields are effected
jaw tightness
dizziness
ear ringing
ear popping
ear pain and pressure
loss of taste and smell
some numbness and pressure on upper pallate
body aches and pain

Had re patching surgery for CSF leak from ENT on July 7th
Put on many meds off and on:
steroids, topamax, Diamox, Oxycodone, Percocet, Naproxin, tramadol, some muscle relaxer I can't remember.
Had LP shunt placed last week (Dec 3)

Now, I have post op pain, neck pain, back spinal pain, side pain and abd pain, discomfort, the back of my thighs are tight and hurt, I just started having pressure in my ears again and my head started hurting again last night. (I wonder if anyone knows about this and if this happens????)

At this point I like you have too many questions and just want to know what to do and how to get rid of the pain. I want my life back and I don't think it will ever be the same. :( I am strong though. I feel I have a good team.
Seattle has the best of the best Neuro surgeon and ENT surgeon and I have a neuro doc here in CDA/Spokane too. I have a good team but am frustrated. I spend so much money going to Seattle for all the appointments and surgeries. This last one was over 2000 dollars. It is getting to be frustrating. :( I am trying to be positive, that is why I decided to come to this site, to find support....hope it helps.

1: Diagnosed: 2009
2. Symptoms: Unrelieved headache, vertigo, dizziness, fatigue
3. Treatments: 3000 mg Diamox, 300 mg Topamax, Octreotide, magnesium infusions, acupuncture, craniosacral therapy
4. Prognosis: Vision is safe and papilledema is healed. Unrelieved headache and pressure. Poor prognosis
5. Pain relief: Zonegran. Have tried Amitriptyline, Vicodin, Topamax, Tramadol

Also!

5. Used to take ibuprofen daily for around 3 yrs, then switched to excedrin migraine extra strength daily for around 1 yr.

MM3
Wow, what a story! I am so sorry you have gone through all of that!!! I am a nurse and work closely with medical personel and even through this experience myself I am so upset at what is going on! I can not believe all that you have to go through as a patient to prove you are in pain and prove there is something wrong with you. I don't want to talk to the doctors about new symptoms or any illness because if i do I know it will bring on more tests and more questions...more "wait" times and more surgeries. I just want my life back. I don't want to do any of this anymore. I know I have to, but I do not want to. At this rate, I am afraid I am going to become addicted to pain meds. Dealing with pain managment is a joke too!! No one listens to that!!

It is interesting to read what people go through. I started watching the big C...it is a series on showtime on my offtime since the surgery and there was a part where she had to meet the student doctors. They kept asking her questions and typing.

She walked over, shut the computer and told them.....look at the patient, know your patient, their name, who they are and what they need. Hold their hand when they need it held, give them the care they need, do not treat them like they are a number and come in and leave with in seconds. It was cool.

I am sorry you all have gone through what you have gone through, I wish it was not like this. It is time to stand up to this and much more. We need to make this more known, I think this group can make a difference. How do we do that though? This is never talked about and little is known about it.

I would love to take any advice and get any info any of you have. :)

Tonia

Also I am on FB, if you want to friend me...I don't know if any of you follow eachother on FB but if you do and want to add me feel free. The more support we have, the better. :)

Monkeymom,

Thanks for the information about Ibuprofin. I had no idea. I don't take it at all anymore because I don't want to waste any of my "2 days" on anything less than a 10-headache that requires serious intervention.

Yes, diagnosed as idiopathic, but I think it is secondary. I have a bunch of other stuff going on and I think it is all related.

I don't get why you are worried about me - I am much better off than most of the people here. No paps, no surgery. Pressure down from 25 to 21 on Diamox.

I still have a lot of symptoms but I don't know if they are because of the IH - maybe they are a symptom along with IH that points to something else. I have no idea. Docs are doing a terrible job finding out.

Diagnosed August 2011
Symptoms: ignoring the med side effects (puking, twitching, tingling, you know the drill) I've had this so long it's hard to sort it out @_@ Um, vision problems, of course, from the paps, that pulsing tinitus, occasional migranes (not as bad as many have, thank god!) General pain, like, anywhere it wants to be that day, though usually near my neck or spine, memory problems, often feels like my head is so 'fat' I can't think at all. My main weirdness would be the little 'episodes' that started the diagnostic clusterf***; hallucenations and hysteria with motor control problems (like seizures) usually followed by a period where I cannot move or speak. This got me first a schoziphrenia, then epilepsy diagnosis, (none of the meds ever helped except hey, topomax) When I blew out the retina on my right eye in august one of the doctors took a good look at it and said "Hey, you've got paps!" (something my previous nerologist had noticed and not bothered with) and sent me through the specialist chute to a neurologist who isn't quite as dumb and he said PTC, definitely. The 'seizures' aren't epilepsy or shizophrenia because the pressure meds make them go away a hell of a lot better than the antiseizure or antipsychotic. I guess my brain is just squished in just the right way. whatever, as long as it's stopped.
Treatments: Diamox and furosemide, though I think I might ask to go back on topomax; it made me forget what I was doing all the time, but less puking.
Prognosis: I don't have a clue. He told me to lose weight, losing weight hasn't done anything but make my clothes too big. Unfortunatly I can't go back to see him until I have his fee in hand (I couldn't pay last time) and seeing as we're out of credit and food going back to the doc won't be happening anytime soon.
Pain meds: Heh heh, pain meds? What pain meds? Nobody will perscribe me pain meds. and if I take my tylenol on top of the diamox on an empty stomach I will lose both of them. wheeeee pain

Oh - the symptom data base. I'll do a quick recap on our method in case you also share the data with Dr. Katz.

The methods are definitely not scientific, it was meant for our own use in understanding our disease. Also meant to help communicate with our doctors. It covers the wide spectrum of symptoms that many of us share, but it doesn't differentiate between IH symptoms, medication side effects, and symptoms from unrelated diseases.

Method:
- The raw data is in tab 2, the summary page in tab 1.
- The members of the forum added symptoms to the list
- The members put a "1" in the symptoms that they experience
- The percentage of members with each symptom was calculated

The data is a little dodgey right now. It's a database that is open to all who have a password, and the password was posted publicly in here.

There used to be about 50 respondants. Data has disappeared and now only about 40 respondants remain. The summary formulas at the bottom have also disappeared, as have a couple of the numbers in the summary page. Before all this occurred I had used the values of the summary equations to build the summary page, so the summary page is still pretty close to the original percentages.

P.S. The full list of symptoms surprised us all. Especially surprising to me were "seizure like events." They sound much like partial (focal) seizures. I wonder what the explanation is for that?

Diagnosed: November 5th
Beginning symptom was seem almost a year before, at an eye doctors appointment, which was confused with the warning signs of glaucoma.
Current symptoms: Bulging eye, killer headaches, blurred vision, double vision, heartbeat in ears, dizzy, stuttery. shaky, eye pain, narrowed field vision, unbalanced.
Treatments: 3 LP's, one night I was given a dose of morphine, when they refuse to do another. 1500mg/day Diamox (GROSS), kolozapam to keep me calm. Upcoming VP shunt surgery.
Hope: Ish. Lots of worry about complications. One of the first things my NS said to me was that they were sure that the VP shunt would fix my pressure problems, unsure that it would fix my vision problems. If it doesn't, eye decompression surgery may be needed.

I have alot to live for. I'm gonna get better. Eventually.

Naisia: Before I forget. I know what you've gone through with Dr. Smith. He seems so intelligent. He seems to care, and likewise, we stay with him and put up with waiting for 3 or 4 hours to be seen (sometimes even being forgotten). But, at the end of the day...it's a nightmare. I am glad that he diagnosed you. Again...he missed my dx because he said I didn't "Look the part." Isn't that crap? But, what sucks worse is the crappy healthcare for people like us in Rochester, NY. He is THE only NO left. The other one was Dr. Friedman and I told you how that went. Now she is gone too. When I was first diagnosed, I worked with the docs through the hospital, but, they aren't very knowledgable about IH. But, I do wish you the best of luck. (Doesn't seem promising does it? ...Sorry. I'll look you up.)

SeaSprite: I'm sorry. I didn't mean to seem condescending when I said I was worried about you. (Sometimes script doesn't translate well.) I was frustrated when I read your post that your doctors didn't automatically know that Ibuprofen could be causing your pressures to rise. (Diet sodas or drinks with artificial sweeteners can do the same thing...Stay away from aspertame!!!!) I guess you have to understand my underlying frustration with doctors all over the world who are treating IH...but, know very little. At the end of the day, it's not their fault...We have a rare disease with no cure. In Ohio, Pennsylvania and Texas this disease is a little more common...but, where I am in Upstate New York...it's hell!!!! I'm so glad to hear your pressures are dropping. I am so glad your pressures have dropped from 25 to 21. Your pressures weren't very high to start compared to most people with IH...but, anything over 180 is concerning and painful, so I'm glad they have this under control. I really feel like getting rid of some of the things that you can control that make your pressures rise and losing weight may be enough to bring you into remission. So, yes...you are luckier than most. Good luck.

For everyone else: I want you guys to know first how helpful writing on this board can be. From the time I was dx'd I began chatting on this board. That record now serves as a diary of everything I went through from beginning to end. Now, I can look back and see why meds didn't work, what doses were tried and of course, I have your stories. I have access to information from patients from all over the world and what their doctors are doing. Looking back I am now able to see more clearly what has occurred. I have sullfur allergies which is why the Diamox/Lasix/Topamax never worked. AND....a mistake was made with my shunt. THEY NEVER DID A DRAIN TEST ON ME PRIOR TO MY SHUNT SURGERY. The reason why this is important is because at the IHRF 2008 conference research was done regarding why some shunts work and others don't. What they found was that for people with paps as a primary problem shunts were often successful as well as ONSF. Those with the idiopathic form of the disease seem to have paps more than those with the secondary form and in these cases, weight loss is always a better method...unless the opening pressures are closer to 40. In these cases, shunt surgery is pretty much an automatic as shunts are primarily used to save the eyesight. But, for people like me who had paps only when first diagnosed but not since. Who have secondary IH and with whom HA is the primary symptom...Shunts rarely work to prevent symptoms. So...the most important test to get an idea about whether a shunt is worth a shot is the drain test. If the drain test works than shunt surgery is worth trying. BUT...a drain test was never done on me. On top of this I have a CSF leak...which throws everything off balance.

I went to the "pain clinic". I put quotes around this because this particular clinic is a bit of a joke. She knew little about IH, although she was trying to fake her way through it. The first thing she said to me was..."Your here to manage your headaches?" I thought, "If she thinks that the disease of IH merely encompasses headaches as a symptom...I'm in trouble!!!" She listened to everything I had to say, but, she had her mind made up about what she was doing before I even got there. This pain clinic doesn't write scripts...they only do behavior modification, physical therapy and acupuncture. She recommended I see a Rheumatologist due to my family history with Autoimmune disorders, because I consistently have a positive ANA and due to my symptoms. (I could have predicted that one!) Then she recommended that I go to physical therapy for myofacial therapy to help the neck and back pain. The problem is that she believes this problem is a "muscle pull" issue, but, it's not....it's a pressure issue that many IH'ers suffer from. (Caused from CSF that leaks out from the spine into the muscle tissue)....but, I said I'd try it. Then, she said she wanted to take me off the Baclofen and on Relaxen(?) which is a muscle relaxer. That's it! She said "You need to get off the Dilaudid and Fentanyl, because long term use of opiates just causes more problems." I said, "I have chronic, uncurable pain. Everything else has been tried and failed." She said, "I know." I said, "Okay, well, that pain regimen has been the only thing that has 'taken the edge off'" and I'm not addicted and I've never misused my meds. She said, "I know." I said, "Well if there is benefit for using them, if I'm not misusing the drug and if they improve my quality of lfe...don't you think there's a purpose?" She said, "No....not anymore." I said, "My mother has MS, RA, Sneddon syndrome, degenerative disk and Fibromyalgia...are you saying she should not be on narcotic pain meds?" She said, "Yep...that's what I'm saying." I said, "Okay." LOL! The ENT I saw at OSU sent me an email...in this email he said, first, for people with my type of case...narcotic use is often the only way to try and control the symptoms and this is difficult because doctors who don't understand chronic pain always want to fix us and don't want to prescribe narcotics. The IH patient (like me) ends up dependent (not addicted) on narcotics, and we require a pain "specialist" to manage this problem. I guess now I have to find one!!!!

MC2010 or maybe vnc3: I can't go back a page to look at your earlier response...but, I think it was you who said you had a CSF leak that was repaired??? My ENT doc in Ohio who found the leak said that they always want to rush to surgery to repair the leak to stop the risk of meningitis...BUT...the surgery itself worsens the IH symptoms. The reason is because with the leak the pressure had some place to go. Once this is closed up...the pressure just builds and the pain worsens. So, he said, "If it weren't for the meningitis risks, I'd advise that patients not have the repair surgery." YIKES! Vnc3: In regards to advocacy...we talked about that once before. I actually have an email into IHRF on this very subject. It would be awesome if they could fund an advocacy group for patients like us. But, I think our better bet is with NORD...(National Organization for Rare Disorders). They have an advocacy group...problem is, they don't yet have IH/PTC listed as a rare disorder...but, I have an email into them about this too. We'll see.

So now what??? I'll share all my records...including my past posts. I'll see the ENT doc up here in NY, I'll see the PT doc, I'll try the Relaxen and get off the Baclofen. (Because my doc started me on the highest dose of the drug (supposed to start at 5 mg. dose...he started me at 20)...I've been vomiting, nauseous, weak, dizzy and have HA and insomnia....I've felt like I was dying, So I'm stopping that. I'll see the Rheumatologist and hopefully get a new neurologist.

When I read my earlier posts, I remembered how much hope I had in that first year. How I thought, "things are rough...but, we'll figure this out." But, now I've been through it all. What I'm about to say may seem very negative...but, it's not...it's just realistic....and that is....Unless there is a cure I will have chronic pain for the rest of my life. And that sucks.

Thanks everyone for your help. Please keep posting your stories...they help tremendously!!!!

Much love,

MM3 (Khrysitne)

I'm sorry, what is a drain test?
And ugh, I'm on of those, "this is tough, but we'll figure it out" people.

Mm3 ... Its very sad what we have to go through being that rhey have no education on this disease. Im thinking about going to my home town (NYC) and see what they can tell me. Very frustrating that im being told i have migraines when im 100% sure theyre pressure has but i guess. Best of luck to you also.

Funny you say that about IB Profin= my NS wants me to take 600 mg 3 x a day for 72 hrs to help with my HA. He thinks it is from the post op LP shunt surgery....some swelling. What do you think?

I think we do need to fight harder for this dx and be recognized more and I am willing to do what I need to do, in our region Idaho/Washington (Pacific Northwest) there is little known about it and little support.

Tonia