Hi Everyone,
I'm new here, and glad to find this place. Sometimes I feel so alone in this I wonder if my doctor made up a diagnosis, since I've never heard of anyone else ever having it, and when I have to explain it to people, they usually wind up looking at me like I'm crazy and their response is always the same "Well, I've never heard of it before," - as if it doesn't exist just because they've never heard of it.
I suppose I should explain my story.
I've had "migraines" for about 10 years now. I went to my GP about them, and at first he told me they were just bad headaches, and would tell me different combinations of OTC meds to try - like two Excedrin, one Advil, and an Alive all crushed up. Of course, none of those worked. Eventually he decided that I must actually have migraines, and started me on migraine medication. And none of them worked. I don't even know how many I tried. All the while the headaches were getting more frequent, and worse. I started having to have family members drive me in to the ER or urgent care clinics, because of the headaches. The headaches would make me nautious, and when I would try to drink or swallow anything, I would puke. That becomes very dehydrating, which makes the headache worse. Usually I'd be put on an anti-nausea med, fluids, and pain killers of all different sorts. That would usually help in an hour or two (which seems fast, when you've been having one of these horrible headaches for 24-48+ hours). But then I'd get them again. I kept a headache journal, recording everything I ate, drank, hours of sleep I got, how much exercise I got, etc. Neither I nor my doctor could find any real triggers. The migraine meds weren't working, so I just stopped taking them, and stopped seeing my doctor about them. I figured it was just something I was going to have to live with. I had been going to college, but struggled with the frequent terrible headaches, and missed many lectures, and exams, and the professors were less than understanding. I tried to explain my problems to them, and even had a letter from my doctor explaining about migraines, but the professors were unsympathetic. I wasn't asking for easier work, or fewer tests. I was asking for incompletes, or ways to reschedule tests I missed, or to hand in homework later if I missed a class due to a migraine. Only one professor obliged. Some just didn't say much, some flat out called me lazy, and one called me a manipulative liar - and couldn't believe that I'd use such a lame excuse as a headache for why I couldn't peform like everyone else. I failed a lot of classes, no matter how hard I tried. My GPA just kept going down and down, and I was placed on academic probation. I couldn't get student loans for tuition or books, and I had to drop out. After having trouble at a couple of jobs, I found one that was very understanding, as they had several other employees with migraines. It didn't pay very well and I hated the work, but they understood.
Meanwhile, I had been seeing my optomotrist every year like a good girl. When I first started seeing him (around 9-10 years ago) he was shocked at how bad my eyes were, and thought it was from me improperly wearing my contacts. Truthfully - I was incredibly irresponsible with them. But the previous vision clinic I went to didn't seem to think anything of it, and never told me I was hurting my eyes or anything, so I thought it was fine. So upon seeing this new optomotrist, he got me to start taking perfect care of my contacts, and over the years got me almost entirely switched to glasses. But even with the perfect contact care, the disposable contacts, and only wearing contacts on special occassions, my eyes just kept getting worse and worse. Little holes started to form in the vision in my left eye, but the thing about holes is that there's nothing there to make them stand out... there's just nothing. Last fall he told me he'd been observing an "anomoly" (as he called it) in my left eye that'd been there for at least 7 years (he'd never once mentioned an "anomoly" in my eye, so I was shocked and a little upset that he knew something wasn't quite right but didn't tell me about it. In any case it was now concerning him, and sent me to a retinal specialist. The retinal specialist examined my eyes and determined I had some scarring on my retina - which was the cause of the holes in my vision, but that they wouldn't change or get worse. They were from toxoplasmosis I must have had at some point in the past. The parasites became cysts, and lodged there. According to him 1/3 of people have had toxoplasmosis in their lives, so it's nothing to get worked up over. He just needed to monitor the scarring, but not to worry. But he was concerned that thought my optic nerves looked elevated, and so sent me to a neuro-ophthalmologist. The neuro-ophthalmologist thought they looked a little elevated, but not too bad, but because of the frequent and severe headaches, sent me in for a CT scan and an LP. The guy scheduling me for the proceedures asked if I'd had an LP before, and told me to expect the absolute worst thing possible. Then my doctor told me about low pressure headaches, and that if I get one, to go to the ER and ask for a blood patch, and that it would help.
The CT was a piece of cake, but I was terrified of the LP. But the doctor and a technician were very calm and gentle, and guided it with xray, and it went surprisingly well. I did everything they told me - flat on my back, lots of clear fluids, etc. The next day though I thought I was going to die. The headache wasn't quite like he said - it didn't get better or worse when I got up or laid down - just was just excruciating in all positions, equally. I had my husband take me to the hospital anyway. On the way there I puked in the car 6 times, and once there I had to fill out paperwork, and they asked me over and over again why I had the LP done. I could barely walk, and barely open my eyes, and tried my hardest to explain. Finally I got into a room, and the doctor came in. He told me if it were him, he'd just wait it out. He told me it would go away in about a week, if I just waited. I told him I wanted the blood patch. So he left and sent in some nurses who gave me some anti-nausea stuff that made me feel like I was freezing to death - so now not only was I in excruciating pain, but I was shivvering, my teeth were chattering, and I was no longer allowed to make medical decisions for myself (because I was now on medication).
That's when the nurse anesthetist came in. I cannot even begin to properly describe how horrible this woman was. She came in with an epidural tray (needles for my back, and to draw the blood, etc.) and wiped up my back, and then had me curl into a ball on my side. I tried my best, but as I was shivvering uncontrollably it was difficult. She kept yelling at me to stay still, and once she started with the needle, she kept telling me to push against it, not pull away. The problem is, your body has certain automatic impulses to things. Like if someone is shoving a giant needle in your back, to pull away. I tried to lean against it, but every time she would push it further in, my body would yank away. I couldn't help it. And of course, I was shivvering. Finally she got it in, so she decided at that point she should take some blood. She was the roughest medical person I've ever seen. She pulled up one of my hands, and started slapping it as hard as she could. She would slap it, look for veins, then dangle it by my fingers, and whack it again, and look, and whack me again. She had to have hit me at least a dozen times on that hand. It was painful. She kept saying that she couldn't find any veins. I showed her the port they'd left in from when they gave me the anti-nausea stuff, and she told me that it was contaminated and couldn't use it. So she decided to start stabbing me with the needle. She didn't give me any warning, and didn't ease the needle in, it felt like getting stabbed. And she'd stick me, and then look at the syringe and go "Nope, no blood there." or "I just can't get any blood outta you." and yank the needle out, and stab me again, an inch away from the last. After she had poked me 4 times, she'd gotten 3ccs. She said she needed 10ccs for the blood patch. I didn't know what was going to happen. She went ahead and injected the 3ccs in epidural needle, and went back to stabbing me. She stabbed me another 5 times, and then the nurse who gave me the anti-nausea stuff came in, took one look at my hands and arms, and said "I'll draw the blood for you." She told him that was great, because she had to go get another epidural tray, because the needle in my back had clotted off, and she needed another one. The nurse was angry. The nurse anesthetist had not cleaned or bandaged any of the places she tried to draw blood from, so they were all oozing blood. The nurse took the time to clean them up and bandage them, and when he was just about done, and my hands were looking like I was wearing gloves the nurse anesthetist came back, and as she walked in the room, she said "So, you got my blood for me yet?" The nurse told her no, that he had to clean me up and bandage me first, but that he was about to do it. He carefully looked over my less bandaged hand and arm, and found a spot that he thought looked good, and warned me and gently slid the needle into my arm. The nurse anesthetist pulled the needle out of my back, and we went through her inserting yet another needle into my back. Again with the "Don't yank away! You have to push against me!" yelling. Finally she got it in, and he had almost 5ccs, and was still drawing. She couldn't believe it, but told him to give her what he had, and then he could get the rest (meaning yet another poke, and possibly another needle in my spine if this one clotted too, because she was being impatient). He told her no, that he would get it, it would just take a minute. He had to tell her that numerous times. She kept getting more and more demanding. Finally he had the blood she needed, and he got me bandaged up and left me to her. She got the blood injected. and got my back bandaged up, and told me to roll over onto my back. She turned off the light and left. Someone came in a little later with a bag of fluids, and hooked it up to the port in my arm, and then left me in the dark, alone, still freezing, and if it's possible, in even more pain than when I got there. I found myself wishing I'd taken the ER doctor's advice, and not let them touch me. Eventually someone came back in to check on me, and I told them my arm felt wet. They flipped on the light to see that the fluids weren't hooked up properly, and were leaking all over the bed. They got that fixed, and brought me a heated blanket. Several hours later someone came in and flipped on the lights and told me I could go. They unhooked me from the empty fluids bag, and helped me to the bathroom. My head was already starting to feel better, but that made me notice the pain in my back and hands and arms more. When I was done with the restroom I walked back into the room and looked around. It looked like the scene of a Saw movie. There was blood on the two of the walls, all over the blankets on the bed, on the pillow, two small pools of blood on the floor of one side of the bed, and one on the other. The blankets and sheets on the bed were soaked in IV fluid. The bed was kind of angled haphazardly in the middle of the room, a chair was knocked over. It was a mess. They brought my husband back to help me out, and he looked around and couldn't believe the state of the room. I looked at him, crying, and told him to take me home. I still have nightmares about the blood patch.
A couple of weeks later and my neuro-ophthalmologist called, he had the results. I was so nervous. Was there a brain tumor? Did I have an abscess? Did the tests show nothing? But it was conclusive - my CT was clean, and I had the highest opening pressure he'd ever seen. So he told me I had Pseudotumor Cerebri, and told me this medication usually helps it and controls it, but that I had to get off of my hormonal birth control, and had to lose weight. He had me take a visual field, and I was on my way. I started off on a once daily Diamox/acetazolomide 250mg tablet. I have not had a terribly bad headache since that first tablet of Diamox!
After 6 weeks I went back, had another visual field, and saw my doctor again. He increased my dosage to 500mg, and I discovered Sequels. The side effects of the tablets drove me to distraction, the sleepiness, the tingling. But on the Sequels, despite the doubled dosage, the side effects were minimal. He said my optic nerves looked the same, and my visual fields hadn't changed. I still had headaches almost every day. Most of them were very mild, just a few were a little worse.
Six weeks later I was back. No visual field that time. He said my optic nerves looked the same. But he didn't raise my dosage. I continued with the same headaches, but still no really bad ones.
Another 6 weeks later he did another visual field test, and said my optic nerves looked a little better. My right eye had improved in the visual field. He did increase my dosage to 750mg.
That pretty much brings me up to speed. I take 1 500mg Sequel and 1 250mg tablet a day now. I HATE the tablet. I'm trying to get ahold of him to see if he will let me take a Sequel every other day in place of the daily tablet. The tablet is making me SO sleepy. All I want to do is sleep, from the time I get up, to the time I lay down at night, I just want to sleep. I'm also having tinglies worse now. I've lost about 20 lbs, and am no longer on hormonal birth control. I'm exercising 3 days a week, and the exercise seems to keep the tinglies at bay. But it's doubly hard to work out when I'm so tired. I've been making myself go, but I can feel in my body that I'm just not getting the same exercise as I was before the added tablet. My headaches are even better now. I only have maybe 3 headaches a week. Sometimes they're pretty uncomfortable, but usually they're mild enough that I don't have to leave work, or call in sick because of them. Sometimes I do skip out on social events because of them. I used to be tired all the time - before the diagnosis, and then while I was on just tablets. But since switching to Sequels and since I've been working out I've had tons more energy. Now that I'm tired again, but know that it's possible to not be so tired all the time, I hate it.
I am usually really good at explaining things to people. I'm patient. I take my time. I go through the details. I'm methodical. But when it comes to explaining what IIH is to people who have never heard of it before, I seem to have trouble. A lot of people act like I made it up. I hear "But I've never heard of that." a lot - as if this condition can't possibly exist just because they have never heard of it before. Most of my family seems to think that it's like a cold, or a sinus infection - that I'll get done with my medicine, and I'll be all better one day. I often feel like my doctor (my neuro-ophthalmologist) and I are the only ones who understand it. I haven't brought it up to my GP or my Optomotrist yet. I am pretty angry at my GP for all of those years of being told "It's just headaches" or "It's just migraines." and never having suggested doing any sort of CT scans or even an MRI, or exploring other possibilities and just letting it continue and get worse. And it almost seems worse since I have responded SO well to treatment! All it took was this medication - and all it took to get that medication was the right diagnosis. And the two doctors that I had been going to for all of those years - my GP and my optomotrist, just completely missed it. I got "lucky" that I had that toxoplasmosis scarring on my retina - which lead to a referral to the retinal specialist ophthalmologist, who realized something was up. It makes me feel like going to an optomotrist maybe isn't sufficient - maybe there should be no such thing as an optomotrist, if they can't recognize elevated optical nerves. My mom recently complained to me about problems with her vision, and went in to our optomotrist, and he told her it was nothing. I told her she should maybe think about seeing an ophthalmologist... because obviously he's not that good at diagnosing eye problems. He might be fine to get your glasses prescription, but aside from that, I think someone better educated is in order.
In any case, I feel lucky that I have been responding so well to the DIamox. It's amazing to not have had a really horrible headache since February! My husband and I are thinking of starting to try to have a baby next winter... and I am worried about that. I haven't brought it up to him, since it seems so far away.
Wow, that's long. Anyways, that's my story so far. I'm glad to find this place!
Subject: Jenni - Diagnosed February 2011 
Sat Aug 06, 2011 12:45 am
to the group! I'm sorry to hear you've had such an ordeal, but it seems like you're on the right track now. There are different treatments for IIH, so make sure you're keeping your doctors informed about side effects. You may want to look at ihrfoundation.org for more specific treatment information. The research foundation has a lot of great information and resources regarding IIH. You could send the link/print off the information for family/friends or invite them to accompany you to appointments..the specialist can answer questions and put things into perspective for them. There's also a section on this site called "Useful Guides and Printouts". There's a guide for Informing People About Your IIH that you might find helpful.
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