Migraine

Hi everybody,
I've suffered from chronic headaches/migraines for about 12 years. I never thought of them as migraines, just bad hormonal headaches that wouldn't go away... I can pretty much describe important moments throughout those years by how much my head hurt...but always thought it was just me...a bad headache...and there was nothing I could do.

Long story a little shorter, I finally found a neurologist in June that I feel like wants to help me. She told me that I definitely have migraines (without aura)and that I had a "high" pain tolerance (wow...high?...I always considered myself weak and low tolerance..) She listened and was compassionate and immediately started me on Medrol Medipack to get rid of an 8-week bout and started me on Topamax (topiramate). The first 3 weeks were great. All went well, the Medrol immediately took the pain away and the side effects of the Topirimate weren't bad.

Then...there's always something...I went to refill at the corner drugstore. As fate would have it...different manufacturer. Teva instead of Apotex. Yucky....I couldn't sleep, I was jittery and there was a nervous, painful "edge" to everything. I realized it immediately, but finally called the pharmacist after 3 days. Well, you know how insurance goes, but the pharmacist was an angel and got the Apotex. Unfortunately, nothing worked right after that...(I had just gotten to 75, but was getting depressed and in a stupor) so I stayed at 50. Then I got a 4 day headache...

Of course, when I called the doc's office, my doc was on an "extended vacation," so the nurse talked to the doctors and they said to "up" my Lexapro. But stay on the 75 even though I couldn't think, all I could do was sit on the sofa and cry. Finally, I said, forget this....I came off over a weeks' time.

Then...headache....four days and PAINFUL!! Called to see if I could get in to talk to a doc...any doc. Well, no, and my doc would have nothing until October! (I have an appt in September). I could talk to a nurse...(no thank you!)

I'm rambling, but I'm sure many of you have similar stories unfortunately. You're at home feeling like crap and you really don't know what to do. So, my husband and I decided that originally the topiramate really helped. So, last week, I started back on 25 mg. I'm keeping a diary. After 2.5 days, the headaches stopped and my mood improved. I'm also taking the "good supplements" -- cal/mag, B Complex, Women's supplements (I've had a hysterectomy). I'm doing really well..

Ok...here's my question...Have any of you or anybody you know done well on just 25 mg of topiramate? I'm considering staying right here. Or, waiting 2 weeks to go up to 50 and then do it am and pm (as the specialists here recommend)and stop there if I can. Is there any problem with staying at 25mg for more than a week? I'm just so sensitive to meds and I want to feel good AND be pain free. (duh...doesn't everyone?)

Well, that was quite the introduction. I hope it wasn't too much at one time. I've been lurking for months, so I feel like I know you guys already.

Thanks so much for what you do and for listening to me.
Kim

Hi, Kim!

Hello and welcome to our forum family! Our goal is to provide everyone with the information and support that we all need to manage our Migraines and/or headaches. To that end, we consider this a “safe harbor,” where nobody tries to sell us anything, and we all use “family-friendly” language so parents are comfortable letting their children read the forum with them.

Please take a few minutes to review our policies and guidelines along with the other information in the START HERE folder. For information about Migraines, a good article to begin with is Learning About Migraines - Where to Start

We're glad that you unlurked!

I'm sure you've read this little tidbit of advice before in your lurkerdom, but it always bears repeating. Please make sure your doctor knows that you've gone back on the Topamax. You shouldn't ever do a med change totally on your own. I know your doc is not in the office right now, but they can leave a note in your file if you call the nurse.

I've never taken Topamax. But I have noticed that generic Midrin from different sources is slightly different in overall oomph. Not enough different to be a problem, but just enough to notice. Sometimes med differences between generics are a matter of dyes or fillers. While the manufacturers have to stick by certain standards for the main, active ingredients, there can be some variation in the non-active parts.

As for how long to stay at individual doses and when to increase or decrease or that kind of thing, that has to come from your doctor. It's very individual, particularly when we're sensitive to meds and med changes. Your medical background and needs have to be considered. It's not something you should do on your own.

Your intro wasn't too long at all. Since you've been lurking, you probably already know that we have a rule that says we take the space we need, no worries. You're entitled.

Thanks for your response. I will call the doc's office. I was just going to wait until I know she's back. A couple of the callbacks I got were way off...(I didn't include it here,but at one point, they asked if I'd ever taken Celexa, then the nurse said, "oh, you're on Lexapro, right?) Ughh...Really like my doctor, but the office began to worry me a bit.

Again, thanks for the welcome. I will continue to lurk and learn

Hi Kim!

Welcome to the forum...or should I say I'm glad you decided to introduce yourself and lurk no longer!

I have been on Topamax. I found that I noticed a difference at 25mgs. Pretty much within days of starting it. I don't know if it was really the drug or if I just wanted it to work so badly, it did. I went up to 50mgs, then 75mgs...after that I had issues with my legs cramping and had to back off of it a bit.

I stayed at 75mgs for over a year before it started to konk out on me. After that I tried Zonegran, which is also an anti seizure drug.

I would think if you continue to do well on the 25mgs, your doctor may keep you there. But, that is for you and your doctor to decide together.

Lexapro also worked for me, but for a very short time. I looked like I was always going to the eye doctor, or on some sort of substance while on it. My eyes were always dilated. It was weird, but it worked for a bit. Not as long as I would have liked seeing as I only had the "big eyes" side effect from it. That I could live with!

I hope you will continue to join our discussions! We love getting to know new people and chat!

Welcome again!

Hi Eileen,
Thanks so much for your response! I think I'm going to ask to continue on 25mg as long as I feel good before moving up. I was reading another post from someone whose doctor is taking them up very very slowly. Since I am so sensitive, that makes a lot of sense for me. As for the lexapro, I did go up to 30mg (per the neurologist), but was on it (20mg) prior to all this for depression (another little "issue" I have to watch out for if I go too high with the topamax..ughh), so I want to be careful and stay balanced. I go back to work next week (teaching) and I've been so nervous since this summer has been "difficult".
So far I've had 5 good days in a row, and since around April, that's doing pretty well. I will say a prayer that I'm on the right track (and for all of you guys as well).
Thanks for the encouragement! So glad I found this site!
Kim

Hi Kim! I just wanted to stop by and add my welcome to the pile

I'm getting ready to start an anti-seizure med in a few days. I trialled it a couple of weeks ago but I think I may have tapered up to quickly because I ended up with an odd side effect (sores in my mouth), so I'm going to taper up more slowly this time. While I was on it, my abortives were working more effectively so I wanted to give it another shot.

I'll keep my fingers crossed for you that a slow taper works well! Please come back and keep us posted, okay?

Hi Laura,
Thanks for the welcome! I'll keep my fingers crossed for you as well...side effects stink, don't they!! So far so good here...I'm hoping I can stay at a low dosage and function well here Oh well, I guess positive thinking can't hurt!
Keep us updated on your progress as well!
Thanks again
Kim

Welcome Kim!!

I've been on Topamax and it did help. Unfortunately I had side effect that I could not tolerate.

I have been aware of more than one person who titrated up very slowly. Everyone is a bit different and a dosage that works for one person may not be enough or may be too much for another. My doctor has always been good about letting me be the judge of how I am tolerating something.

Good luck and welcome.

Thanks Cindy,
I did get a headache yesterday (and it's lingering)...so I'm debating on going up, but I think I'll still wait and see how long it lasts...It's much milder than "normal", so I'm trying to be objective -- sometimes hard to doPatience....ughhh...not my strong suit!

What are you on now, if I may ask?

Thanks again
Kim

Morning Kim,

It does take time for prevenatives to kick in. The general rule of thumb is to give it 3 months. I've been lucky that what ever is going to happen usually happens within a month. And when I say whatever, it can be good or bad action from the meds.

I'm now on 400mg of B2. That was one of the first things my neulogist add. While it did not impact the frequency of my migaines, it made a huge difference in the intensity.

Lexapro 10 mg. This was added when I had depression as a side effect of a medication that seemed to be helping my migraines. While I am no longer on the medication, I've stayed on this. Frankly with 2 teenages and going through menopause, I needed all the help I could get. My doctor understands that!!

CoenzymeQ10 600 mg. This is my primary prevenative. There are some limited studies using it as a prevenative. Last year I was on 3 or 4 different prevenatives, none that I tolerated or helped. I kind of wanted a medication holiday and my doctor was willing to let me try this as there are usually very few side effects. It's worked well. I'm going to go back and get something else added as I'm still having too many migraines, but they are far fewer and far less severe.

Take care and hope we keep seeing you around.

Cindy
I started B2 about 3 weeks ago. Looking back at the diary, what I think I see is a decrease in length, meaning I'm getting ones that only mostly last 12-36 hrs before I get a break of some kind, instead of 3-7 days.

Thanks for your input. I have B2 and CoQ10 in the house as well. We'll see!!
Kim

Hi Kim, and welcome!

The first time I was on Topamax, I tolerated it very well and had great success with it at 50 mg (once daily). I was on 25 mg for about a month, then increased the dose with my neuro's ok. I took it for 2.5 years before I titrated off of it.

I've since tried going back on it twice, but didn't have any success with it - it no longer worked and I had intolerable side effects. But, I'm very sensitive to medication and tend to have weird side effects.

The 2.5 years I took Topamax are the only period of time my Migraines and Chronic Daily Headache were well managed.

Best of luck to you - let us know if you have any other questions!

Hi,
Thanks so much for giving me hope....so far so good. The little headache I had this week ended more quickly than normal (1.5 days) and was more a level 2-3 than a level 5 So, I think we're having some success.
I hope you find something that works again...what a bummer.
Thanks again
Kim

Hi Kim.

I've tolerated topamax really well. I've been on it for about 2.5 years now. I started on 25 mgs and have slowly moved up to to 100mgs 3X a day. i found that as long as the neuro moved me up slowly the side effects were little to none. i found that it lowered the number of my headaches down a lot once we got to a dose that worked for me.

i'll keep my fingers crossed that things work out for you.

best.