New Daily Persistent Headache Support Group

My headache started a few months ago- MRI and CT were fine- something looked a little weird about the sinus cavity but thats it. OTC drugs do nothing for my headaches (but used to) and neither does high does naproxin or codine. Got sent to a neurologist who graduated me from 25 mg Topiramate to 100mg. Now that I'm up to 100mg my hands are tingly and my headaches are sometimes worse than they ever were BEFORE I started the Topiramate (like had to leave work bad).

Midrin used to help with these headaches, and now it doesn't help either and I'm practically taking it every day. My neurologist just wants to keep upping the Topiramate. In addition he's prescribing all of these migraine medicines- and the headaches I have are not migraines. I've mentioned that I never had headaches with 50mg and asked if I could back to 50mg Topiramate and the Dr. just upped it to 100mg.

Has anyone else had problems with more painful headaches on Tompiramate? I'm getting really frusterated with my neutrologist- I don't feel like he's listening to me. Also, I'm begining to consider some drastic life changes- as in cutting out coffee (and yes- for a grad student, that's "drastic") and things having to do with my stress level.

So I essentially have three questions:

1) has anyone else had better luck with 50mg than 100mg?

2) how do I go about finding a second opinion from a neurologist about this?

3)any other suggestions about things to pursue? I really don't want to be taking a pill every day for the rest of my life.

Hi Jwerner, welcome to the group. It is possible that Topamax is making your headache worse, but what immediately jumps out to me about your story is all the OTC painkillers, naproxen, codeine, and midrin. All of these are things that you took (or in the case of midrin take) because you are in pain, but they can cause rebound headaches (also called medication overuse headache if you like to google things) which is one of the most common types of chronic headaches, and fortunately it is not difficult to treat. Basically with rebound headache the medicine you take to help with the pain ends up keeping the headache cycle going.

Tylenol (acetaminophen) is reputed to be especially bad about this and it is one of the ingredients in your midrin. I suspect that the Topamax is not the issue at all, but the fact that your neuro is not listening to you is not a good sign (and if he is the one giving you midrin that isn't a good sign either).

Here are some links about rebound headache- the second one I just found today but it seems to have more information in it (though I found the formatting hard to look at with my headache).

http://www.mayoclinic.com/health/rebound-headaches/DS00613

http://www.mc.vanderbilt.edu/headache/rebound.html

To get a second opinion from a different neuro, the easiest thing maybe to go back to your GP (or call, you might be able to do this by phone) and ask if they can refer you to someone else, preferably to a headache specialist (which is a neuro who only sees headache patients). If you live near a large city hopefully there will be one, if not you may have to get another regular neuro. If for some reason you can't get a different neuro I would just ask the first one if it could be Medication overuse headache.

In reading your story it is entirely possible that you will get better and not have to take a pill everyday for the rest of your life. Your odds are a lot better than for most of us since it sounds like no one has actually ruled out one of the most common causes of chronic headache in your case. It was the first thing my neuro (who is a headache specialist) did when I saw him was to pull me off everything that could be causing a rebound headache...in my case there wasn't much and it didn't work, but for some other people who have stumbled upon our board it has worked fantastically and they eventually got back to normal or almost normal. Feel free to ask any questions (I am not thinking clearly enough to know if this makes sense), and please let us know how things go.

Thanks- the rebound stuff does make sense- I've always had headaches and I've always just reflexively taken tylenol for them, not to mention the massive amounts of coffee I drink. I haven't continued to take the codeine or any OTC or the Midrin recently since I don't feel they actually help. I checked this morning and of the two headache specialists in my town I can't get in until May! (and there won't be any closer) I'm thinking about trying to get an apt. to one when I visit my parents over christmas (a much bigger city). But at this point, I feel my only option is to "self doctor" by removing the caffeine and cutting down on the topiramate myself and seeing what happens. (and laying off the OTC pain killers as well)

be careful dropping the caffeine too quickly, some people who are used to having a certain level of caffeine in their blood on a daily basis can actually suffer a headache when they drop it all together. it has something to do with the way that caffeine acts on the blood vessels. if you're going to drop off the caffeine, try to do it a little more gradually, like drink "half caf" coffee for a week or so, and then something with less caffeine like tea for another week or so, then drop it all together. your body will respond a lot better to this than just dropping it "cold turkey"

I would call your neuro's office and tell him you want to get off of everything to be sure you are not having a rebound headache and ask him what the titration schedule should be to get off Topamax. If he flatly refuses to tell you, go back to your GP and ask. You don't want to just drop this one cold, it has the risk of bad side effects (though at least you aren't at a higher than you are).

If you are a heavy caffeine drinker (and what grad student isn't?) the gradual method is likely to be gentler on your head. I have found that caffeine withdrawal blends seamlessly into my normal headache so I don't notice it (I found this out by "stepping down" with tea that I thought was caffinated until I actually read the bottle and realized I had been on decaf the whole time), but for most people it just adds misery.

With the neuros, it also helps to get on any sort of cancellation lists they may have. I got in earlier to see mine for my first appointment because someone cancelled and I could get there with fairly short notice.

I'm just coming into second everything that Mary and lilhannon have said. Most likely your problem is rebound headache, possibly on top of whatever other headache you have. Most neuros should try taking you off anything that can cause rebound and then re-introduce things in a controlled measure at a later date if necessary (i.e. abortive meds on top of your normal preventative).

Regarding the topomax, I've been on various doses of this med at level of between 50 and 300mg/day. It's never caused headaches on top of my normal background headache for me but I do find that the side-effects are worse at the higher doses (for me this 200mg/day plus), and the side-effects are virtually neglible at 75mg and below a day.

Regarding the caffeine, I've tried going caffeine free and it didn't help at all. I love my coffee but my current neuro is not a fan of caffeine and is particularly concerned about 'caffeine drop'. He thinks that the worse thing for people with headaches/migraines is fluctuating the amount of caffeine they have each day. So, I'm allowed to have coffee but only 1 cup and then after that it's decaf. This is fine with me. You could probably do the same thing but have 2 or 3 coffees and then decaf, the key is to do the same thing every day. I always have my caffeinated coffee first thing in the morning, and then only decaf tea or coffee after that, so as not to fluctuate my caffeine levels. I agree with the others though you need to taper down the caffeine slowly.

The other thing you may want to try is eliminating migraine trigger foods, this can work for some people. It may not get rid of your headache but it might help you figure out if you have any food sensitivities and whether there are any foods you should be avoiding as they are aggravating your head. A lot of doctors will recommend this or at least ask if you've tried it when you see them.

If you aren't happy with the advice you are getting from your current doctor, do try and find someone else. It is important to feel happy and comfortable with your doctor. Get a referral as soon as possible as it can take awhile to get into someone new.

Hope to see you around more soon.

Have you had a mrv done? They just found a blood clot or some obstruction in my sons sagittal sinus. He had had a mri and a ct scan and it didin't show on either. He has had a headache over two years now. Been to countless doctors including Mayo clinic. Can't believe they just now found it. Maybe worth checking into. I was going to wait and post about this when I had more information. They are doing a CT venogram. Dr. Rosen from PA is the who found this.

I hope that this will turn out to be the cause of his pain and that it can be treated easily. It would be wonderful if he could finally be rid of the headache.

We hate to get our hopes up yet, though they say that this is the root of his headaches. Now just waiting for more answers.

Wshield, can I ask how you got the doctors to try this test, the MRV and/or CT venogram? I'm curious as my headache issues started off with a sinus infection that did show I had sinusitis "all over the place." And, I have pain from the top of my head down in a line towards and in my nose. Also, about once a week, I blow my nose and lots of blood comes out in the mucus. Oh, and my ears get red and hot about two or three times per week. I've told numerous ENTs and neuros about this but they don't seem to have any ideas what to do.