Migraine

So I've now been on Topamax for about 7 weeks... I'm up to 175mg and I've noticed that almost all of my side effects have grossly declined. Most of them remain there, but very slight. The cognitive effects are the greatest... I have a lot of blank moments, trouble analyzing things on the fly, multitasking and whatnot. Overall, however, I've noticed that in the last week especially they've all faded away.

You're all thinking, sounds great, right? I was thinking the same thing, except what also happened is that the mild days (plenty of 3 and 4s) I was having that I was previously thinking I should probably attribute to the Topamax have left to. I'm back to 5 and 6 being the low end and 7-8 being the norm. I'm puzzled. What's the dealio??

Are you having straight up migraines, or are they triggered by Tension Type Headaches??

Have you been sucessful in finding any of your triggers?

Hi Eileen,

I still don't have a satisfactory diagnosis. I have mixed feelings about what I might be experiencing. My pain is present in different areas at different times (fairly positional, but fond of temples, occiptal, and above my eyes), it's not a band, and usually feels like it's throbbing. It didn't get worse with activity in the beginning but ABSOLUTELY does now. I'm quite sensitive to light, moderately to sound... It doesn't really fit the bill for tension or migraine in my opinion... and apparently my neurologist... although I'm firing him.

My appointment with the new guy is still upcoming... the 13th is creeping up... I'm hoping for some real answers. However, I was hopeful about the Topamax because it seemed to be an answer for both. ?? The thing that does fit my headache pattern is NPDH. So I feel like a big puzzle when it comes down to WHAT this head pain is really. I'm hopeful that this new doctor can help me. If not, I'm considering Jerome Goldstein in SF. Anyways--that's a lot of background information...

What would cause this sudden change? I was starting to believe the Topamax was really working. I was riding out the side effects... I hit 200mg on Monday and figured I wasn't far off from finding out if this could be a fix... or a semi-fix maybe.

Sorry-that was very unclear with triggers.--jostling around is a huge trigger, bright lights too. I haven't really gotten anywhere with food so far if that is a factor. I think muscle tension might be one... just because I get really really really cold and I get so tense that it tends to get really bad after that too.

Hi Candace,

You've probably already read New Daily Persistent Headache - The Basics. An interesting thing about NDPH is over 80% of patients can pinpoint the exact day it started.

Since New Daily Persistant Headache is a primary headache disorder, there are some disorders that can mimic it. Care needs to be taken to rule out other secondary conditions before an accurate diagnosis is made.

I'll be keeping my for you!

Hi Candace!

Glad to hear you are seeing a new doctor.

When I switched neuro's and finally found a good one, I told him exactly what my pain was like.

Also - do you keep a Headache diary? If you don't yet, I really suggest starting one. It really is one of the most helpful tools when dealing with your doctor. It helps you because you know exactly how many migraines you got, when you got them, what the impact of them were. This can help them in their diagnosis too.

I found it so useful and my doctor was very impressed at how maticulous my records were (I do go a little crazy, writing everything down).

Keep us posted on your new appointment ok?

No headache diary... I just haven't been satisfied with any that I've found online. I suppose I really should start now that I'm finding such a link with activity... things have changed again since I had last considered a headache diary. I've really wanted to design my own symptom diary that would allow to me to keep track of everything that I really feel I need to, but it's proven more daunting than I thought!

Nancy, I have read the article... It's actually what lead me to this website in the first place, searching for something that came close to describing what I was experiencing. I do know the date, August 11th, I can remember the morning pretty clearly still, which is pretty unusual for me!

I asked my doctor about NPDH, but he brushed me off, not really liking being pinned down for a diagnosis at all. I'm hopeful about the new appt. I've had an MRI/MRA, but no lumbar punch. We'll see how things go... Still increased pain with my Topamax, still feeling puzzled, plus a return of the tingles... more oddness.

candace
i have a small pocket calendar that i use as my migraine diary. i just write in there when i have one and what time of day, any triggers i can think of.

that works for me and is enough to show my DR. so maybe that will work for you. I don't think the diray has to be really involved to be effective

I use a calendar for my ick log, too, except it's the desk-sized spiral. I also highlight it, so I can "read" it at a glance without the words. Migraine is yellow, fibro is orange. Thyroid is green, and so on. It works very well for me.

Good idea... I guess I've been wanting it to be *perfect* I should settle for a general record keeping instead...

Hey Candace,

I think I'm experiencing something similar.

I've been taking topamax for about 3 months now. Although my dosing is different, I can relate to the spike in migraine level. It started out, there was a significant decline in my migraine pain level. My migraines would stay about a 3 or 4. . .and they wouldn't be as bothersome. . .I could get by just with a mild pain. . knowing it wouldn't come full force. . .but lately they've turned the page into more severe. . .

Basically just as I thought the stuff was working?

But. . .they also haven't stayed that way. . .

So, I'm wondering if I had some triggers. . .or if it was just coincidence. . .

I'm taking 100mg. I don't know how the dosing works either. What determines how much is needed. I've been reading that some people are taking 300mg. . .etc. . .So? Another bazar thing that has occured with me is that my side effects went away. . .but recently some have come back. Like the tingling sensation in my hands and feet. It had pretty much gone completely away, but it recently came back. Why? I don't know!

Any of this sound familiar to anyone? Anyone know why?

Candace, this is the diary I've been using for about three months now, HERE. I really like the format of it - I just ordered my second one. It helps me to keep track of all of my various symptoms as well as my daily pain levels and what I've eaten, along with the weather. They're available for sale on amazon.com HERE.

MJ-I've seen that diary before... it's the one that inspires me to create my own so that it's perfect. I'm sure I should just get one and start just using it!

Jade, I'm not sure exactly what you're experiencing, but I think I might understand. I experienced some changes, some ebb and flow of my side effects with each increase of my dosage. So while the tingles eased off after I got to 100mg, they came back a little at 150mg. I think that's probably normal, or at least, not abnormal.

I'm still feeling puzzled by the sudden end to the help that I felt Topamax was giving me. Hoping the new neuro has some answers. Maybe the mildness I was experiencing was just a natural variance in my head pain after all??

I don't think I've gotten to say hello yet!

Welcome to the forum Jade!

It seems that I have found that with my talks with people here, that Topamax seems to be the "wonder drug" for some, but only for a while.

It was for me. It worked great! I went migraine free the first month I was on it - I thought that is the end of my migraines for good! (I wish!) Then they slowly started to creep back in....

I'm still on Topamax, but now have Amitriptyline in the mix too, that mix worked great for the first month or so too, and now I'm finding I'm back in the same boat again.

Maybe for me it's just the season change too? I don't know, but I want something else now.

Anyway - welcome to the forum! Let us know if we can help you out with anything!

quote:

Originally posted by Jade2412:
Hey Candace,

I think I'm experiencing something similar.

I've been taking topamax for about 3 months now. Although my dosing is different, I can relate to the spike in migraine level. It started out, there was a significant decline in my migraine pain level. My migraines would stay about a 3 or 4. . .and they wouldn't be as bothersome. . .I could get by just with a mild pain. . knowing it wouldn't come full force. . .but lately they've turned the page into more severe. . .

Basically just as I thought the stuff was working?

But. . .they also haven't stayed that way. . .

So, I'm wondering if I had some triggers. . .or if it was just coincidence. . .

I'm taking 100mg. I don't know how the dosing works either. What determines how much is needed. I've been reading that some people are taking 300mg. . .etc. . .So? Another bazar thing that has occured with me is that my side effects went away. . .but recently some have come back. Like the tingling sensation in my hands and feet. It had pretty much gone completely away, but it recently came back. Why? I don't know!

Any of this sound familiar to anyone? Anyone know why?

Anecdotally, I've heard from some people that taking too much Topa is as bad as taking not enough. As in, migraines can come back. I'm not sure there has been any research on this, but I have seen mention of this on another migraine board.

If it is the case that your body can't tolerate the higher dose, and you were doing well on the lower dose, you can always talk to your doc about lowering your dose again.