I take Topamax -- what did it do to make you "crazy"? I have tried so many medications that had lots of wacky effects but this one is tolerable. It will give me the occasional tingly toes and fingers, has kept my weight at a pretty stable level (usually it's known for causing weight loss, which i would have preferred, but oh well!), fatigue and some short-term memory difficulty. It's tolerable compared to other meds, and helps with my daily pain, so for the time being I gotta do what I gotta do.

I also know what you mean about doctors telling you that it's "all in your head" -- isn't that so nice?? One of the 1st docs I saw about my headaches was a neurologist for CHILDREN and was telling me it was in my head, and that maybe I had ADD. Yeah, THAT made sense!! Clearly, we left him quickly and moved onto a neurologist who took me seriously.

Seriously though, best of luck with your training for the Avon Walk - that's so awesome that you're doing that. I've lost someone very close to me to breast cancer so you're doing a great thing. I contacted the moderators about hopefully having an official Support Group on this site and they will have more up in April and will let me know if there will be a headache one!

The acupuncturist that told me it was psychological has an 85% success rate with headaches. He was obsessed with making me better and I think his ego was damaged when he couldn't fix me. I stopped seeing him after he said that because I think it was his way of telling me he was giving up on me.

Topamax didn't make me lose weight either or I would have stayed on it! LOL! I really was not on it long. 3 weeks, maybe. I didn't like the way it made me feel-tingly, dizzy and very emotional. I remember crying all the time when I was on it. Of course, it was the first med I took when I was diagnosed, so it could be I was just depressed and not dealing with the diagnosis well.

I wish I had ADD. Maybe it would help me lose the ability to focus on this stupid headache. I read that your friends and family have been pretty supportive. Mine have been as well, but I think my husband might be losing patience with me. When I come home from work I am so exhausted I just want to take a nap and/or lay on the sofa. I force myself to do my "chores" because like I said, the more active I am the better I feel. How has it effected your daily routines? Do you have to take naps often? Do you ever get a good nights sleep? I wake up anywhere from 1-5 times a night-I never feel completely rested.

Also, what do you do for a living? I sit behind a desk and in front of a computer all day. I am a perfectionist and attention to detail is (was) my speciality but it seems like everything I turn in lately is being returned to me for correction. It makes me feel like I have lost total control. My bosses don't really know what is going on with me and I have the ability to hide it very well by remaing upbeat and positive. How has your HA effected your life and job?

I really could not (and still don't) believe I might have to live the rest of my life like this. I also have a hard time believing that nothing caused this to happen to me.

I just graduated in May from college, and am taking time off before grad school - all because of this NDPH craziness. My boss and coworkers know about my situation - I told them about it so that when I have to go to Philly (I'm in MA) for my appointments, they understand... also, if I'm having an "off" day, they will understand, too. I used to be a big perfectionist too, and it took a while for me to come to the realization that it may be a long time (if at all) until I am able to feel like one again. When I am able to complete a task and just get it done, that's good enough for right now.

I've always been a weird sleeper, waking up multiple times during the night but always going right back to bed. During my most recent visit to my headache docs, they said that they think I have a mild case of Restless Leg Syndrome, which I think does fit. That could be a possible cause of my constant waking-up, they think.

I'm right there with you, having a VERY hard time believing the possibility that this headache business could very well continue for a whole long time. That is so scary, especially on the cusp of my applying to grad schools (to get my Masters) to then go into the workforce. I am questioning myself constantly, which doesn't help with the depression that we all know. My mom, dad, boyfriend, etc. always try to be supportive and say that it won't be a forever thing, but it's really something that NO ONE knows. Not even the "professionals". It's so scary, but at least we all have each other here, right?

When you wake up in the middle of the night, do you have a HA? I do. How in the world can that be? They have a med out for RLS, not that you want to take any more meds. How often do you go to Philly? I need to find a way to get a referral to that place.

How long are you going to wait before you go to grad school?

I meant to tell you I was sorry about the someone special you lost to breast cancer. Cancer sucks. A friend of mine was just diagnosed with pancreatic cancer and has only 4 months to live. He is only 43. It is so sad. I guess things could be worse.

With Topamax, I'm not certain how high a dosage you were on when you started and what you were up to when you stopped, but for it to work, if it does, you usually need to be taking between 100-200mg, and it can take at least one month on the drug to get up to that level, and then it can take up to 2 months for it to fully work. So, you may have been going up on the medication too quickly too early as it can certainly cause those side effects, or maybe you did go up the normal rate but the drug is just not for you. I'm at 125, tried 150, but it made me too emotional. I may try and go higher one of these days, but I think the drug has worked a little for me because I had nausea 24/7 with mine as well as a headache, and now the nausea is mostly gone, which is good. My headaches may have improved a little as well too, since I think they're more one-sided now, but still 24/7. I've tried most other therapies as well now and nothing has worked.

Did you by chance feel strange at all in the days leading up to your headache? I felt strange for 3 days before mine started. Mine also came 3 days after I found out I passed the bar, which was a somewhat stressful day, and what I thought may have caused me to feel "weird," but I still felt that way even though I passed and was elated.

I took topamax when I was first diagnosed and I was only on it for about 3 weeks. I really don't remember what the dosage was, only that it made me forgetful, dizzy, and emotional. I don't really have nausea. Sometimes I get it when I wear myself down but it sounds like yours was constant. My HA is in both temples although it shifts around to the back of my heads at time.

I did not feel strange at all. No stress or illnesses. What do you mean you felt strange?

By strange, I'm not sure how to describe other than I felt like I was going to be getting sick, but I never did, though I didn't feel tired. It started on Nov. 3, the day I was getting my bar results. Once I found out I passed, I figured that I'd start to feel better because I just thought it was stress since I was stressed, I took out close to $200K in loans from law school, so I had a lot riding on that test, but I passed, so I was quite elated, but i still felt weird. Still went out to see a movie with my friend to celebrate though. Didn't get too much better over the next two days. I mean, I wasn't horrible, just didn't feel right, but still had energy, no headaches, just lack of appetite, and "strange" feeling. Then, on Nov 6, that Monday, woke up with the nausea and headache. So far, of the few people I've talked to with this condition, no one else has reported feeling strange prior to the headaches starting. Some have been sick.

Also, headache specialists are pretty uniform in agreement that NDPH is a hetergenous disorder, in that it likely has quite a few different origins, hence why some people do respond to drugs, though many do not. Obviously, since most do not respond to drugs and it is a headache, something completely different is causing it, and hopefully soon doctors will figure it out. But, it's rare, so it's not really being studied. Currently, doctors are just throwing more of the same at it, and that has not been effective, so as long as that remains the game plan, I'm not hopeful. One doctor, in Mi, Dr. Rozen, studies NDPH pretty frequently, so hopefully he, or someone else, finds something that leads to a better treatment plan.

I was taking neurontin for awhile and I thought it was helping until I forgot to bring it with me on vacation. While I was off of it, I noticed my HAs weren't any worse so I quit taking it. I am going back to a new neurologist (in the military) soon to see if they can try something else. I am also going to ask for a referral to Philly. What is your pain level with and without medication? I am about a 4-5 daily, but it can go to an 8.

I am curious, what kind of student were you? Did you procrastinate to get your work done or did you do it all on Monday? Did you strive to get straight As? Are you anxious at all? Do you have high blood pressure or vascular problems. Poor circulation?