Migraines & Headaches Community

I would try the Zonegran because I have heard it works for people who have responded to Topamax in the past.

Personally I have tried Topamax and it worked great for awhile but then stopped working. I have heard this is common. What other preventatives have you tried?

Another thing you can take is Indomethicin. I take that if it gets bad, because Triptans no longer work. But it shouldn't be taken as a preventative, only as an abortive and with food because it can cause stomach upset.

II have had other patients with the same severe cognitive side effects from topamax, so I understand your problem.

Zonisamide works in a similar way to topamax. The cognitive side effects tend to be much less with Zonisamide. I often have my patients try zonisamide when they have member problems with topamax. The doses of Zonisamide are different than with topamax, usually 100 mg/day with a slow increase to 300 mg/day.

Zonisamide has a sulfa group, so if you are allergic to Sulfa antibiotics (Bactrim, Septra,etc) you may be allergic to Zonisamide.

Hope this helps

I have been on Topamax for 1.5 years and was started out at 50 and now I am on 150 mg a day. I also had weight loss (40lb in a year) and tingling in the beginning and I still struggle with some I forgot what I was saying moments. It is my understanding that if you stop or wean yourself off this drug with the help of your physician that this type of drug will not work for you're again. This particular drug has helped me going from a headache almost every day to 6 or so a month. I started taking birth control with the Topamax and this reduced my headaches down to 3 a month during my cycle, since my cycle usually falls around a storm as well. I do tend to try OTC Excedrin before I will use a Zomig nasal spray when I get a headache (I get a nose bleed from the product) at the onset of my headaches and it usually will take the headache away. I do not have much caffeine in my life, since Topamax made soda taste flat. During the past 8 months I developed acid reflux, something skinny people shouldn't have and I never had when I was considered overweight. Currently I am 104# and 5' tall and if I lost 40lb, you know I was considered overweight at my height. Test ran and now I am on Nexium, since priolsec didn't work to make the feeling stop and I was constantly taking antacids. There is another young woman in my office who is on the same drug and she is on Priolsec and Topamax now as well. Is this something that you have heard other patients complain of when taking Topamax? I did read the insert and it isn't mentioned as a common side effect. I have been on one other drug for migraines such as Pamelor. I also receive allergy shots, which may or may not help with the migraines. At one time I was down to 1 a month around cycle for 9 months, but I switched where I was getting my shots from my ENT to a board certified allergist and had to start the shot cycle over again and the doctor didn't retest me and I began getting sick and my migraines are back and in the past two ? weeks I have had 6. Here in MI the weather is on a barometer cycle of major changes since it is fall and I don't know if I should contribute it to the allergy shot change or the barometer cycle/season change. Have you heard of allergy shots actually helping migraine patients? I also should let you know that I am allergic to sulfa, just in case you suggest any other drugs.

Topamax is helping with the number of migraines that I am having but the cognitive side effects are extreme. I have been taking it for over a year with no improvement. I heard somewhere that there was a medication available ti counteract these effects. Is this true? If so, can you provide the name of the medication and the recommended dosage. i have not been able to increase the dosage to the amount that my provider has prescribed or take Topamax every day because of the side effects. Also thank you for the information about the Sulpha allergy with Zonismide

I agree that the cognative side effects of Topamax are not discused enough. I started it and could not even remember the most of the month I was on it. One doctor called it Dope-a-max. I would be very interested to know about Zonisamide and who it may work compaired to Topamax.

Took Topamax for 5 years. Had a few side effects at first (loss of appetite, sodas were flat tasting, couldn't eat much salt, tingling in fingers, memory loss) but it was effective in reducing from 5 headaches a week to approx. 1 a week. Gradually stopped working, as did all the triptan medicines. Went through all of them. Am now taking the Zonasamide and it has been a miracle. No side effects whatsoever and I have about 1 headache every six to eight weeks. Haven't found much to knock it out once I get it, unfortunately, and sometimes it will last two or three days, but at least it's not once a week. Cambdia, plus Tramadol works if I catch it early and can go to bed, but I hate the hangover feeling the next day. So glad I switched to Zonasamide. Only downside, I guess, is I did lose 20 pounds with Topamax and I've gained 10 back because I can eat again. I, too, experienced reflux and IBS symptoms with Topamax that kept me from eating hardly anything but bland foods.

I'd been taking Topamax for four or five years, the side effects were terrible as far as the cognitive part. Also, my vision changed. (will it reverse??!) It never did prevent migraines, but I went from having fifteen or sixteen per month to nine or ten and they weren't as severe. I didn't go to the hospital for an injection for three years. I had previously gone once or twice a year. After a while it stopped working. My doctor added Lamotrigine (sp?) and it helped some, took me back to where I had been, so that was good. We moved back to TX and I have a new neurologist, she took me off both drugs and started me on Zonisamide January 3rd. In just under a month I stopped having migraines. I'm eleven days migraine free now. That is a BIG deal!!! I hope this drug will be my miracle drug!! I'm taking 200 mg at night. The month of January was tough though....it is like they got worse before they got better, is that normal??!! I can't wait to see how long I go. This is a first.....i mean years and years since this has happened!!!

I've been off Topamax for about five months now and off Lamotrigine for just over a month. I started Zonisamide January 3rd, it doesn't seem to have the "dopamax" effect that Topamax had on me. I had such trouble 'finding' words, that was the biggest problem. I'm on day 11 migraine free, which is a big, big deal. I'm thrilled....not even a 'hint of a headache'. I have high hopes!!

I did not have any luck with the Triptans, but I started Maxalt 10mg and it works.

I am so glad there is a post for this. I am extremely sensitive to medications that make you drowsy. (OTC sinus meds, etc.) I was on Topamax for 3 days and could not even function. I am a legal assistant and the 3rd day I couldn't complete more than two assignments all day. It was horrible. I then went home and slept for 14 hours! I still wasn't refreshed when I woke up the next morning even though I had not taken any meds before going to sleep. I decided I couldn't take the Topamax any more. I didn't even see my kids those days. I was completely out of it. I am supposed to start the Zonisamide this weekend. I hope that it is better than the Topamax. And I hope this post helps anyone who already is sensitive to medications that make you drowsy.

You mention above that Maxalt helps you. The doctors should tell you that taking any pain medication, at least 3 times a week or more, just causes rebound headaches.

You should try other daily preventative medications which is what Topamax is. For some of us, we can't tolerate any of the medications. The only one that I can take which has helped me is an herbal one called Petadolex. But there are certainly other treatments such as Botox which can also help you, like they have helped me.

So don't give up if the medication route doesn't work for you.

I hope you're doing good on the Zonisamide! I am headed to my PCP in about an hour with I'm not sure what. Depression? Sad, irritability.....I don't know if it's the Zonisamide that I started in Jan or what. I think I was feeling this way before, but it's worse. I'd been on Topamax for a few years prior to this medication. I just read that the anti seizure drugs can cause irritability and depression. I'm at a loss. I'm ready to get off it totally and try something else. I had a few really good months, then last month I had 13 headaches. I am feeling hopeless, sad....and the headaches do not make me feel this way. Hormones? I really don't know what to do, I hope my doctor can come up with a plan!

To Stratusphr,
Are you taking an anti-seizure medication for your migraines? There are plenty of other daily preventative prophylactic migraine medications besides Topamax that you were on before. Why don't you change to another med?

And why don't you take an anti-depressant? They actually also help as pain killers. That's right. And it would help with your mood.
I wish you the best.
Sara

I WAS taking an anti sezure med, that is what Zonisimide is. All the cognitive side effects, and they made me irritable and just a 'sad' feeling. Not me at all. I've looked over all the anti depressants that they commonly prescribe for migraine prevention and the side effects are enough to stress me out and make me depressed. Sexual side effects and weight gain....just to name two. I attended a first ever migraine support group meeting last week and the neurologist was good, good information, tips etc. There are other things that do not cause rebound headaches and don't have all the side effects I'd like to avoid. He mentioned a muscle relaxant, not Flexeril, but one like that. I was not clear on if it would be a 'preventive' or what, but I'm going to ck it out. I have an appt with a neurologist, a new one, this coming week. I'm hoping she'll have some new ideas that do NOT include a drug I'm not willing to use. I had 13 migraines last month when I WAS taking the Zonisimide, the previous two months they were about half that number. I only get a 'sick' migraine where I need an injection once or twice a yr when I'm not taking an anti sezure, otherwise, an Imitrex or Maxalt, usually just one, will take care of it within an hour. He said they will NOT hurt me, but the worry is rebound and/or developing chronic daily migraines. I was feeling at a loss, but now I'm feeling at least like I'm in control. I'm in Dallas, surely there is an answer that is acceptable!!! Wish me luck!!!! LoL My mood has improved already!!