The following dialogue is how I explained what is going on to a friend of mine this evening. It's not exactly well written or anything, but it gets the point across. There are a few edits, seeing as how you all don't need to know the obvious about this horrible disease!


"I saw the neurologist on Friday.

There is good news, there is semi-ok news, there is indifferent news, and there is bad news...

The good news is that he isn't even considering surgery right now...

the semi-ok news is that he did an MRI with and without contrast, and considering that I didn't get a call from him saying, well, anything, I'm assuming that everything there is normal, which means that there is no brain tumor or distortion of my brain or chiarii malformation or anything like that...

The indifferent news is that while he looked at my eyes himself and said that I'm showing no signs of papilledema, he kept saying that he was no eye doctor and that he wants me to have my eyes looked at this week. So tomorrow I need to find an ophthalmologist and schedule an appointment and find a way there before the end of the week. It's probably going to be a waste of time, and it's probably going to be that nothing is wrong, but I'm going anyway...

The bad news is that he didn't want to do anything. My second worst fear has come true, that they are going to tell me that they can't do anything for me or that they don't want to.

I have been seeing my migraine doctor, Dr. Bennett, for like 3 years now. I have been suffering from chronic migraines since I was 17 (and I'm now 25). We have tried what feels like a gazillion drugs and my body just seems to not respond to any of them, or it responds the first time and then it stops.

Then, last June, my doctor decided to do a spinal tap for the first time. I agreed, hesitantly, and when the pressure came back at 250, he told me that I had IIH. Well, being that IIH is a rare disease, I did everything I could to find information on it. What did it mean my life would be like? What were the treatments? Was it curable? What caused it? Why me? And on and on and on...My doctor immediately put me on Acetazolamide (or Diamox, if you can't pronounce the first) which is supposed to slow the production of CSF (Cerebrospinal Fluid)

Hold on...I just looked up my pressures and I have them along with the dates wrong...

I was diagnosed in November of 2010...and my pressure wasn't 25, it was 23...(250 and 230) ok, so then he put me on Acetazolamide and then when things didn't improve, he did another spinal tap in June, and my pressure was 150. That is not high, but they took some fluid off anyway, and that helped tremendously...

then, in September, on Labor Day, I went to the ER here in South Bend...after attempting some drugs that didn't touch my pain, they decided to do a spinal tap. They spent 20 minutes in the ER working on it before they decided to send me up to radiology (which meant I had to wait about 4 hours because it was only 4am and radiology didn't get in until 8am)...in radiology they actually knocked me out before doing the spinal tap, which, while it was a nice feeling at the time, took away some of the benefits of having the spinal tap in the first place...that isn't to say the spinal tap didn't help at all...but at the same time, my opening pressure then was 100, which is the lowest it should be for an adult, and they still drained some out...(basically, I ended up with a headache from the anesthesia when I woke up and by the time that headache wore off, I had a low-pressure headache, and then my pressure increased to painful again).

Finally, over fall break, Dr. Bennett decided to start the Botox treatments for my migraines. I know I am dual diagnosed, so I was ok with this...yes, a little cautious about being stuck with a needle 38 times in 5 minutes, but I was willing to give it a try...and overall, the Botox has helped the migraines...but the IIH is still there, alive and kicking...

Then, over Christmas, I was supposed to have my second round of Botox, but Dr. Bennett broke his back and had to have surgery and was out of the office the entire time I was home, which meant that I had to wait until Spring Break to get my second round of Botox...I understand that he couldn't help me because he was incapacitated, but the Botox was wearing off, and the migraines came back with a fierceness that I don't want to experience on top of my IIH ever again...

So then Spring Break happened. I was almost 100% incapacitated starting 2 weeks before hand through Spring Break. it was all I could do to get off the bed or the couch to go to the bathroom, nevertheless make it to class or try to focus on homework...

Spring Break, all I did was lie on the couch in pain, sleep, and go to the doctor:
Tuesday morning I saw my PCP
Tuesday afternoon I went into Dr. Bennett's to get injections for my headaches (they didn't do anything except leave a bruise that is twice the size of a 50 cent piece on my butt that is still there)
Wednesday morning I saw Dr. Bennett for him to give me my second round of Botox
Wednesday afternoon I saw my psychiatrist
Thursday I called Dr. Bennett's to schedule a time to see him on Friday
Friday I went in to see him and was in so much pain that I had to keep my sunglasses on inside and the lights in the room off. We talked and he tried to give me a shot of Immitrex...that exploded my headache even more. I didn't think it was possible to hurt anymore, but I did. I lied curled up on the exam table trying not to cry for about 3 hours. He finally sent me home with steroids and a new drug to try to calm the headache and orders to call him if things got worse and for sure on Monday to let him know how the weekend went. The other thing he told me before he sent me home was that he was thinking about taking me off of the Acetazolamide. I didn't like this idea. The Acetazolamide might not being helping a lot, but it has been helping some, because my pressures haven't been as high since I started taking it...
Saturday morning I woke up feeling just as bad and ended up calling the doctor on call from Dr. Bennett's office. She had me try a combination of medications over a 4 hour period and they didn't do a thing. So I called her back and she had me go to the ER. We went to the ER about 2pm, got taken back right away, they were really nice, a little slow, but really nice. My head was at a 10/10 on the pain scale...they gave me some anti-nausea meds and some morphine...the nausea went away, but the morphine didn't even touch the pain. That is when they looked at my chart and saw that I had been diagnosed with IIH previously...So they decided to do a spinal tap. My 4th in 17 months...(not as bad as 4 in 10 months, which is what I thought it was, but still not great)…They had a little bit of trouble getting the needle in at first, and I was worried that they weren't going to be able to...but finally they did get it in, and they told me my pressure was 225, which is climbing back up there in the borderline range...they drained off some of the fluid and, I swear, 15 minutes later, my pain level had gone from a 10 to a 5 on the pain scale...The doctor came back in and was like "Well, you're feeling better, aren't you?!"…and my mom could tell too!! So, we were discharged with instructions to follow up with this neurologist, since Dr. Bennett didn't seem to be taking care of the IIH...

then, last Wednesday, I was talking to a friend, Clea, online in the morning and I was explaining just how bad I felt and we agreed that if I still felt that bad by the time we got to the class we have together at 11 that she would take me to the ER...

Well, I don't know how I survived from 6:30am until 10:45am when she found me, but she said that I looked like I was ready to kill someone I looked so bad...even my professor could tell that something was really REALLY wrong...so he sent me and Clea to the ER...

Well, I got there and was taken back right away and the nurses were great...but then the doctor came back and treated me like I was just there to get drugs...which wasn't true. In fact, I told him up front that Dr. Bennett doesn't let me have narcotics or opiates unless it is ABSOLUTELY necessary because of the rebound headaches that I get from them...

but he still acted like he couldn't have cared less about me...he ended up giving me a 2-hour dose of magnesium, Toradol, and Reglan...

when that didn't touch the pain, and I complained to the nurse about how the doctor had treated me and been completely dismissive of what I had to say, he ended up giving me Zofran (more nausea meds, which REALLY work well for me) and Dilaudid, which is stronger than morphine. Well, let's just say that the Dilaudid did the trick...temporarily...

the first dose brought my 10 down to a 7, and the second dose (which I had to practically beg him for...he wanted to discharge me at a 7, which would not have been good...I told him either I got more Dilaudid or I got a spinal tap...he decided the spinal tap at that point would have been over kill (and I kind of agreed)) brought me down to a 4… a 4!

I haven't been at a 4 in YEARS!!!

the bad part was that I was then high as a kite and Clea had to take care of me for several hours until she felt safe taking me back to my dorm...I went back to my dorm and crashed...hard...I fell asleep and didn't hear anything, none of my alarms, not my roomie coming and going, NOTHING, until 12:30pm on Thursday...and then I was starting to feel terrible again...

The Dilaudid was wearing off and my rebound headache was starting to kick in...(it's only now, 4 or 5 days later starting to wear off...)

So then, Friday, I go to see the neurologist...

First off, the front desk of his office is not managed well and it was a good 15 minutes before anyone even noticed that we were there...then, it was a matter of giving them the 11 pages of paper work they had e-mailed to me to fill out and them getting my insurance information and my photo id and all that...then we waited...for about 30-45 minutes to get back to see the doctor...we finally got back there and he was beyond flabbergasted...he didn't have any of my records, all of which I had given permission for him to have, he just started firing questions at me, which I answered to the best of my ability, but then he would ask a different question and I would be like "Well, before that previous thing happened, xyz happened" and he'd be like "URG! Ok, let's back up...AGAIN" and then he saw that I was seeing Dr. Bennett and he asked if the appointment with him was for a second opinion, and when both my dad and I said no, that we had been referred to him by the ER doctor, he didn't want to, to use his own words, "step on anybody's toes" which I understand, but at the same time, when someone comes to you in severe pain, how can you just ignore what is going on?! So, then he got mad at Dr. Bennett because Dr. Bennett isn't doing blood work on me every month to check my potassium levels as should be done with anyone on Acetazolamide...and he didn't want to just start "throwing pills at me" because he wasn't completely sure what was wrong, even though all signs point to IIH, especially the relief I get from the spinal taps...but then he kept saying that I don't have papilledema so I can't possibly have a full blown case of IIH...and he was totally unwilling to discuss pain treatments, saying that "Dr. Bennett and I have the same drugs available to us to treat your pain...I don't have anything new to offer" which is REALLY frustrating, because I know that there are other things out there...I know other people (some of you) who are on other drugs...anyway, my appointment ended with an MRI with and without contrast that I'm assuming didn't show anything abnormal because I haven't heard from him...My appointment was at 9:30am...I didn't get home until after 3pm...it was crazy...

then my headache got really bad and Saturday through Sunday around noon, I was unable to do much of anything. Every time I would stand up or go up the stairs I would get really dizzy...and for the first time in my life, I didn't go to Easter Sunday Mass...it has ripped my heart to shreds, but what was I supposed to do? I thought, at that point, that I was going to get physically sick...luckily, things got a little better as the day went on and I was able to visit with family a little in the afternoon/evening, and the bus ride back to campus today was actually productive...

but now I don't know what I'm going to do...

I have to see this ophthalmologist this week (and I don't even know if there is one in town)...and then I have to schedule with the neurologist for when I get back from school...and I don't see Dr. Bennett until June, and that is for more Botox...I'm thinking about making an appointment with him for sooner to discuss the IIH and pain management, but I'm not sure...

So much is up in the air right now...

so, that is what is going on with my health...

on top of all of that, Clea, my friend, last Monday night, was unofficially diagnosed with IIH...the odds of that are slim to none...but her pressure was so high that they were surprised that she was still conscious...(which means her pressure was somewhere up in the 300s or 400s)...but it's nice to know that I'm not alone in going through this...that I have a friend who knows what it's like, to an extent, and that I can help guide through..."

But the pain is out of control, and I feel like any semblance of control I had over the situation has gone by the wayside with these doctors messing with me like this and not helping me with my pain. I don't want to get addicted to pain killers, and I don't want to take more meds, but I can't live like this anymore, living from ER visit to ER visit. It just doesn't work. Somehow I need to get through the next 5 weeks until I am home for the summer...not that being home will be any easier. For the first several weeks I am home, I am taking 2 online summer courses through my college. Plus, on May 29th, my mom is having both of her knees replaced. And my dad still doesn't have a job, which means that he is home all the time, but pretending to do productive things, so I won't be able to interact with anyone, even though they will all be around.

Ok, I think I'm done ranting for now...besides it's 3:30am and I still have Accounting and Numerical homework to finish...oops!

Heather it might be an idea when you see your Doctor to discuss suitable pain medication that wont give you rebound headaches, for when your headaches start. If you were to have pain medication and felt the start of the headache, you would be able to ward it off with suitable pain relief before it started moving up the scale. You can't dismiss the fact that being given pain relief did help, and if you were on it regularly andf it was staggered and structured it could make all the difference. Have you read Wylees post on Combo Meds? Has anyone tried Pain Med Combo? IT WORKS I think you should read it and think again about whether pain relief this way would help and discuss it with your doctor.

You also need to discuss with your Neuro your IIH medication, the one you are on either needs adjusting or perhaps changing depending on what he thinks, but you need to discuss it with him and make clear the problems you are having with raised pressure, so that he can properly and medically decide what is going to be best for you.

You also have to prepare yourself that he could recommend a shunt, which I know you don't want from our previous conversations, but could end up being a possibility given the problems you are having. There doesn't always need to be papilloedema there for your pressure to be high, and that has been proven in many medical IIH articles.

As you yourself have said, you cann't go on like this forever, so you need to have an ernest and honest discussion with your doctor about how your IIH can be managed better.

I'm sure our other members will also be able to give you some good advice.

Heidi