Hello, my name is Elizabeth.
I have struggled with having a headache every day of my life for the last 8 years. The headache started when I was 17 years old. I had multiple doctors tell me it was just a migraine headache and made me keep a headache journal and try all sorts of medications to see what would rid myself of the daily head pain. I went through this for 8 long years. I thought I was destined to have a headache every day for the rest of my life. I at one point mentioned to my Mom and Mimi that if I ever woke up with out a headache I would either be dead or dreaming.
In the last few months loads of things have changed in my life and I fell into Major Depressive Disorder. I was required to take 3 different types of anti-depressants. One is a morning one, another is for sleeping, and the last one blocks migraines. Still have the daily headache but the pain that started to get unbearable stopped and my headpain went back to tolerable. All 3 medications also are used to treat depression. I also asked to have a referal to a therapist. I have 2 children and their dad doesn't like helping out at all so I really needed to get well for my kids. Therapy has been going very well. I really love my therapist. I was telling Amanda (my therapist) about my headache and when she heard that I had this headache for 8 years she immediately told me to go to a neurologist. Since I am on Minnesota Assistance for health care everything must be done through a referal. Amanda contacted my doctor and my doctor gave me the referal to have a neurologist.
My neurologist is an amazing woman. For the first time in 8 years I had someone actually listen to me. I had someone who cared about my health. I was a person to this woman and not a form of income. My neurologist had me go to an eye doctor and the Mayo clinic for an MRI. My MRI came back clean, as did my CAT scan from a recent ER visit. My eye doctor said my optic nerves looked ok but he was unsure why I no longer have peripheral vision. Once all the tests were done I went back to my neurologist to find the next step. Apparently that step was an evil thing called the Spinal Tap! HAHA I am betting everyone on here has had one of those! Worst medical procedure EVER. Anyway my doctor said someone my age should have spinal pressure of 10-15. And my spinal fluid pressure ran at a 27. So my test was positive for IIH. I now have to see my eye doctor every 3 months and have regular blood tests to make sure the diuretics are messing with my potassium or something like that.
I am not going to lie. I am very upset about this dianosis. I am 25. I have 2 little girls (Gabrielle age 5, Mikayla age 4, 15 months apart.)that depend on me. My ex husband is a complete creep who left us when we found out that Mikayla was to be a girl. He has nothing to do with my children, and even screws us with playing games with child support payments. The company I worked for (it was a title company) lost their underwriter and so all offices except the legal department at headquarters were closed right after Christmas. I have been desparately trying to find new employment, but there is nothing out here. And to top everything off I have this. I am glad this will not kill me, but I am still very depressed about this. I am glad there is a support website. I am hoping to find a physical support group near my area to go to as well.
Well that is my story.

hi Elizabeth,
welcome to the site and I'm so sorry it took so long for you to be diagnosed. myself, in retrospect I know I've had this for 11 years, and I just got diagnosed this year too. my ICP is 220-230 so borderline and I suspect that's why my optic nerves are OK so far. I'll bet your pressures were higher intermittently and damaged your vision at some point in the last 8 yrs, and they are just lower now for whatever reason so that your nerve heads are not currently swollen. I am concerned your eye doc can't imagine this scenario, I'd ask about it. so sorry about your ex, don't get me started about that as I would not have anything nice to say. but I can definitely commisserate. I hope that you get your health situation under control soon. you will find a lot of support on this forum, for whatever you need to vent about or ask about. if I were you the first thing I'd do is apply for social security disability. you have been out of work for more than 6 months and you can qualify for backpayments to the date 6 months after you stopped working. make sure to paint a very clear picture of your current level of functioning with your illness, that you really cannot perform any kind of work with your constant headaches, fatigue, vision loss, etc, and hopefully you will get benefits and then can just focus on taking care of yourself and your girls. you will get payments for each child that you have also, so that will increase your benefit.
Deb

Deb so much for that input. I do see my doctor on the 12th. I am worried about filing for disability but I will talk to her about this. My headaches do make it hard to get through the day. I drink loads of water and coffee and that seems to take some of the pressure away.
I will update when I know more!! :-)

actually..... with IIH it is better if we are fluid restricted, as well as low sodium. and while my neurologist said that probably one cup of coffee is OK,and this does always seem to help, caffeine has been shown to INCREASE cerebrospinal fluid production. so you probably want to back off on the water and coffee.
I am super swollen in my lower legs, which has been shown to be associated with IIH in 70% of people. I don't do well wtih Diamox or Topamax but Lasix helps me, so one of the strongest diuretics is what seems to work for me, pulling fluid off my body and off my brain.

oh no!! I didn't know caffeine was bad! I haven't had my big sit down with my neurologist yet I suppose she will tell me then! I am so sad now! I love coffee. It really helps me keep up with the girls! Do you think that is why my head starts to throb later in the day and evening? The head ache is there in the AM but it is not bad but the longer I am up the worst it gets to be. :-( I think what I have done wrong then, is when it starts to throb I go for more water/coffee. It helps a bit but then my head starts throbbing again shortly afterwards so I drink more coffee. What you said makes a lot of sense now.

well, I know that a little bit is OK but probably not a lot. yes, ask your neuro what they think. I find that I tend to feel better towards the end of the day, and definitely after a warm shower for some reason. it is as if it just takes all day for the fluid to drain out of my brain while I am upright and gravity can pull it out. then it all goes back on at night while I'm sleeping.

another thing that I don't see many other people talk about that you might want to start paying attention to, as a trigger. the Valsalva maneuver. it is created when you bear down, as in a cough, sneeze, or going to the restroom. but I find that just singing or talking can do it and makes me dizzy. if I have a crying jag, that will make me sick for 24 hrs. having to shout at my kids when they don't listen? needless to say, they don't get disciplined properly. I can hardly deal with them without wearing noise cancelling headphones because their noises are like nails on a chalkboard, I am so sensitive to sound. I think the noise makes my brain swell. I am basically uncomfortable unless I am alone in my office on my computer and it is QUIET.

Hello Elizabeth, and

Mankato, huh. Interesting part of the country. Drove through there many a time. I used to drive for Midwest Coast out of Sioux Falls.

I am so sorry to hear about your situation. I cannot imagine having these headaches for so long. Bless your heart. What a trooper that you have been able to function as well as you have all this time. I hope that now that you have a diagnosis you will be able to get some real help And do stay after that vision. You need to protect the vision that you have left, and maybe once your pressure is lowered, you can regain what you have lost.

As far as the coffee goes, I think, like everything else, there is no definitive answer. My docs never said anything about restricting anything in my diet. Their main thought was to lose weight (which does help some people) and use extra pillows under my upper body and head when I slept (I now have a wedge as well as pillows so I sleep at a good incline which does seem to let me sleep better and awake without a headache.) A lot of this is trial and error. Keep a symptom log and see what works for you. You (and your docs) will find it very helpful.


Feel free to drop by anytime, and rant and rave, ask a question, or just to chat. That's why we are here!!

Thanks!!
I did talk to my doctor. the Diamox was giving me a bad reaction, so she changed me to a more potent one.
I did ask about fluids and caffeine. She said with my diuretic it is important to keep pushing fluids to make sure I do not dehydrate. She also said I can have coffee and/or tea but no pop or alcohol (not a drinker anyway) She said every with this thing has different triggers and every also has different treatments that work. I think part of the reason I was able to cope so well was because I was drinking lots of coffee. When I went a month with out it in July my headaches were crippling. Now when my head starts to hurt I normally go for either tea or coffee and that takes the edge off. A lot of times it hurts really bad right before bed, but I am able to sleep now due to Amitriptyline.
I do use the pillows too. I have a reclining couch so some nights when it hurts real bad I will go sleep on my couch.
I really am glad to know what my diagnosis is. 8 years dealing with pain and not knowing why was horrible. Even though this thing sucks, I am glad to know it not as bad as other things my doctor was testing me for. At least I will be able to be there for my girls for a long long time.
I am scared of doing any type of surgery. My doctor hasn't mentioned it yet, however I also haven't gotten my thorough treatment plan yet. I get that on the 12th. My neurologist is working with my eye doctor my primary and my therapist to come up with the best options out there. It is comforting to know I have a team of trained professionals trying to help. But surgry scares the pants off me. Do you have input about that?

I think the scarey thought of surgery is one of our uniting forces. It was the overwhelming fear that led me to have a lp shunt installed instead of the vp shunt my docs wanted me to do. The thought of having brain surgery is just terrifying. But installing any shunt is a piece of cake to a neurosurgeon.
I have since learned to trust my docs. They truely have my best interest at heart. Once you have a team like this, which it sounds like you have, trust their judgement. Ask questions until you really feel comfortable, but do your research, but try to follow what they say to do.

Hi Elizabeth!

Welcome to the group. Sorry I'm a little late in saying hi! *hugs* So glad you found us.

I can relate to a lof of what you wrote about ... I'm the mom of an 8-year-old girl myself, and my daughter suffers from a migraine-related disorder too called Cyclic Vomiting Syndrome ... so I can totally relate to you (and Deb too!) as far as that drive we feel to have to try to be well for our kids sake. Some days are just so hard.

Try not to get TOO worked up right now with fears about surgery. Follow through with your treatment and see how you're doing. The good news is that not everyone who has this condition has to have surgery. Next month will be 3 years since my diagnosis, and while I am not in remission, I do manage pretty well just with Diamox. I also lost weight. For me, it was helpful. It doesn't work for everyone, but I figured why not try, right? My symptoms are very much improved, I'm able to work and take care of my daughter, and have a relatively "normal" life. And at the time of my diagnosis, my opening pressure was like 44, and I had permanent double vision. So it really can get better ... just wanted to put that out there. *hugs* Hang in there, sweetie and let us know how we can help.

Wow everyone here is so nice :-)

Thank you for the flowers, Elizabeth. I think because we have been there, we have learned the best thing we can do is to pay it forward. I hope that as you feel better, you will join us in that aspect.

As far as the lp goes, we have found that having it done under a CT Scan makes it easier....

They can do an lp under a CT scanner?!?! Wow I have so much to learn! I have found some other sites like this one but this one by far is the best. I told my mother to come sign up here. I think this is a wonderful place to get the emotional help needed for this diagnosis.

Oh my, you do have a lot of reading to do. We'll make you a walking text book in no time!
The scanner is a fluoroscope. It is the BEST! Allows the doc to see in real time where the needle is.
By all means, have your family, friends, neighbors come on the site to read more about IIH. It is often helpful for others to read about things.

Is that the thing they did my blood patch with? I was in so much pain I wasn't really paying much attention to it. But they had me lay on my stomach and put me under what looked like a giant micro scope. Then they kept sticking the needle in my back saying they were looking for the leak. Does that sound like the same device? And if so does it feel better than a regular LP?

I have a question...does anyone have tailbone pain at all from this? Or do you think that is something else entirely? My mother thinks it is all related since my tailbone only recently started hurting (AFTER my LP)
She thinks that I either A.) bruised it somehow, which with my balance is a good possibility. or B.) Tailbone is part of the spinal column and that sometimes it takes a little bit more time to get the pain signal there.
I did read somewhere that sometimes people have tailbone pain from this. This is a whole new ball of wax for me. The only time my tailbone hurt was when I fell down at Skateville when I was 10 years old!! (part of the reason I never took up rollerblading lol)

The fluroscopy is just a type of x-ray, but LP tends to go better because they can actually see what they're doing. In my experience the doctor uses his foot to tap controls moving the table & taking pics. They snap a pic, then tap the needle, snap a pic, etc. You still have to endure the same stuff, but much easier to take. If you're at a teaching hospital, you can also request no students or residents.

As far as your tailbone pain..there is a bundle of nerve endings in the base of your spine, so the LP could have agitated one of them or you could have something else going on. If it's been 7-10 days or more, I'd check with your doctor. Sometimes a cold pack helps with the swelling or hot pad soothes the pain.

Check the guides & print outs section for other helpful info. Let us know if you have any other questions or concerns..

Julie

Thank you Julie!!!

Hello Elizabeth and a very warm welcome to the group. hugs What an absolutely terrible time you've had, but I can see that you are a very strong willed and determined person, by your post, and I know how hard the days on but it will get better for you. I was ina similar position many years ago, but I kept telling myself while ever I had the strength to face another day, I had the will and faith that things would improve.

I am so very pleased that you found us, and we are here for you whether it be to share an experience, ask questions, or even to have a good old rant, we are here for you. We will try and help you as much as we can.

Heidi

hi Elizabeth;
I have a question for you. when you had your kids, did you have them vaginal or cesarean? apparently vaginal birth is contraindicated with IIH, so I am wondering if you did have them that way, how things went? was it OK or did you get a killer headache or have any complications that might have been IIH? obviously no one knew you had IIH when you had your kids. same with me, but I talked my OB into Csections for other reasons and I feel blessed now that that worked out for me, because I surely had IIH when I had them.
Deb

Actually my pregnancies were horrid. My oldest tried coming at 20 weeks and they put me on this med that I had to take daily to prevent her from coming. They told me I could stop taking it October 28th 2006. I went into full fledged labor that day, but did not give birth until Halloween. I was in 3 days of labor and 7 1/2 hours of pushing. It was sheer agony. She tore me literally from one end to the other. I did have a horrible time. I had back labor with both my girls. My youngest I had 6 weeks early. Her labor was relatively quick, but she staid in the NICU for a few weeks before she could come home. She was 3 months old the first time I was able to hold her without any wires attached. They sent her home on a machine that would let me know when she stopped breathing and if she started to seize. It was some sort of infant apnea device that belted around her under arms. Both girls were delivered vaginally, both girls I had terrible back labor. As far as my head pain goes...it was like my head was an egg and it was ready to crack. The only thing worse than that pain was the post spinal tap headache. Both pregnancies I was completely miserable. I have also had 3 miscarriages. Now I am starting to wonder if this is partially the reason for the problems. I never really thought about it before. Thank you for bringing that up. I am going to ask my doc about it.

wow, I'm so sorry. they look beautiful now, I hope it was worth it!
I wouldn't be surprised if there were a relationship between your IIH and the pregnancy problems, miscarriages and early deliveries you had, but I guess you would have to ask your doc about that. there is an association between IIH and hypercoagulation, and there is an association of recurrent miscarriage with hypercoagulation. perhaps you should be worked up for hypercoag, maybe antiphospholipid syndrome or lupus.

In the last few months I have been under so many tests. My doctor has ruled out Lupus, MS, sjogren's syndrome, and other auto immune stuff. I have never heard of the other 2 things, but I looked them up and I actually have a problem clotting. I am very anemic so apparently I have a low hemoglobin count or something. I am not sure if it is possible to be anemic and have those other conditions you suggested but I will definately look into it! :-)

Thank you by the way for the comment on my girls! Yes, it was sooo worth it! My girls are everything to me! :-) I wish we could post more pictures on here! I would love to show them off!! Gabi is the one in the blue shirt and Mikayla is the one in the red hoodie. Gabi is a HUGE girly girl and Mikayla is my little Tom-boy. It is so fun to see such different personalities, and how they can still be best friends!