Topamax

The injections have worked tremendously. It’s cut out the majority of the headaches that topamax hasn’t helped. It’s cut the severity of it too. I can just take naproxen instead of sumatriptan. I haven’t had to refill my prescription like I used too. One thing I’ve noticed was emgality seems to last about three weeks and I start to feel headaches closer to the next injection. Another problem I’ve had with the injection is the last four injections I’ve had its been giving me an injection site reaction. I’m getting a welt that itches like crazy. Overall I’m happy. Dr asked me if I wanted to lower my topamax but I’m afraid to. Not sure if I should try…

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That sounds similar to what my daughter has told me about botox when she was getting that. Its hard to know how someone without Fibromyalgia would react to it, but for her, she had a little difficulty right after the injection for a couple days, then it worked great. Less headaches by far and lighter severity. But the last couple of weeks before the next injection were hard because as the botox wore off the headaches came back, sometimes with a vengeance. Her insurance coverage if botox ended, so she had to go without for a period of time and the new injection was Amovig. Being just the first injection, its hard to tell whether or not it will help her. My guess is no because recently she went to emergent care 3 days in a row because it got so bad. They gave her morphine the first time then moved to dilaudid the next two times. Of course that worked beautifully, and at least for those 3 nights she was pain free and able to get some much needed sleep. But the problem is, she can’t get either of those meds long term, and once that wears off nothing at all would help her. She has tried just about everything else under the sun with little to no relief. It really frustrates me as her Mother, because I feel so helpless in comforting her. I also feel kind of responsible, because it’s genetic, and I passed it to her. I had migraine pretty bad at the age she is now (35) and fortunately, after menopause it went away almost completely. I still get mild headaches that pretty much any OTC can handle, and they don’t happen often. I am hoping the same happens for her, but mainly I hope they can find something that works safely and consistently for her. BTW; What has your doctor said about the welts you get at the injection sight? Ask him if its ok to apply witch hazel to calm the welts. That stuff is miraculous ! It looks like rubbing alcohol, but doesnt sting when applied. You just put a little on a cotton pad, and hold it on the sight for a few minutes and the welt should either be gone or much less irritating. It’s funny how some of the old forgotten remedies still work wonders in today’s modern world, sometimes even better than the new stuff! I hope it helps you. Thanks for responding to my question. I hope you find ongoing relief. Migraine is the worst, and I wouldn’t wish it on my worst enemy!

I was on topamax for a few years and had all the cognitive symptoms as well as only reduced intensity and duration. I had daily migraines for months. I got daith piercings in both ears and my tinnitus went away, migraine I had went away immediately! I don’t have them often anymore, when I do I use sumatriptan. It knocks it right out. Sometimes excedrine migraine works. I usually try it before sumatriptan.

Anyway, email me anytime 😊,

Jennie.

I’m on a once a month shot called amovig and for break thru a nassail spray called zomig. I too have tried all the prevention and treatment with no success. Hope you get some relief

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Dang it I had a reply… written and poof!! 🙄 I tried Amovig upon the advice of my Dr. at Mayo Clinic in Rochester. Instead of relief I had 3 weeks of insane tinnitus in my right ear that started hours after the shots and least for 3 LOOOOG weeks. Didn’t think the tinnitus could could get any worse but boy it did! He had also written me a script for Cefaly so decided to try that. Loved it - and was so relaxed at times I would doze off! Until session number 6. The intensely is supposed to stop around 14
minutes & then I wear it for the rest of 60 minutes. Blissful! Don’t know how but it calmed down my anxiety also! And then 1 day while wearing it (for atleast 20 min) it’s like the electrodes or whatever went crazy and it hurt so bad I was screaming at my husband to come get it off. I couldn’t touch my forehead without a surge of pain. I couldn’t “wrinkle” my forehead. I was wailing on the bathroom floor. He got the pad and everything and just ripped it off in one fail swoop. My forehead where it had been s SO red! Took a while for it to stop hurting so bad. Call my Mayo neurologist to tell him and then emailed the Cephaly Medical Director. He said I must have gotten a “bad” one and sent me a brand new one. Fast-forward a week when I worked up the nerve to try it again. I had been assured by him the odds of it happening again were slim to none. Wrong. About a week in, I was home by myself and had been wearing it atleast 1/2 hour. It had already stabilized at 14 min. The stupid thing started to ramp up in intensity to the point that within seconds I grabbed pad and all and just ripped the whole thing off. It sent a surge of electricity up one of my fingers! I emailed the Cefaly medical director again and this was his reply -

“Based on your previous description, the most likely indication would be that your experience is allodynia, paraesthesia intolerance, or allergic reaction to acrylate in the standardi pads. Further than that, we cannot explain what you are experiencing. In regards to a refund, I am medical inquiry only. You will need to contact the ordering department regarding a refund.”

Mark Harman MD MBA
Medical Director
Cefaly Technologies

I would love to hear if anyone else has had this experience!

Back to square one. I’m on a very long waiting list to start rTMS. We will see.

Amy

Not Amovig - Emgality was what intensifies the tinnitus. Dang topamax wrecked my brain 10 years ago. Ask my husband. I’m not the person he married 22 years ago and I hate that!

They helped but resulted in producing kidney stones and I had 2 surgeries.

My neurologist had me on 100mg Topamax 2Xs a day for a while due to having chronic migraines. She eventually weened me off it after having me on emgality for a few months. She also put me on Zembrace Symtouch (sumatriptan injection) to take at the onset of a migraine. Since starting the zembrace my migraines are more controlled now than they have been for majority part of the year.

I was on Topomax , the mgs were gradually increased.
Today I’m migraine free.

This sounds very similar to my experience.

About the Cefaly? Or topamax? Would love to know if someone else has had issues with the Cefaly! Thanks!

I just started shot last month and yes it’s helped. I also was taking Sumitriptan, but they only give 9 pills a month. I have major neck issues that keeps a headache, some things just make it easier, Topramax wasn’t one, but then everyone is different

It’s not, I stopped taking it 2 years ago and my short term loss is gone. I have my full memory back, although sometimes I wish I didn’t now LOL

I was on Topamax. I did well on the lower dosage. Once increased, I had a severe reaction and everything tasted disgusting…

I can’t drink coke anymore. It’s totally change the flavor.

I was on Trokendi (which is a new, expensive brand name drug that is basically topamax with a few other little things added). At my primary care appointment I found out that in a little over 2 weeks and I had lost 15 pounds!! The only new medication was the Trokendi so I immediately went back to my neurologist. He said I had to be titrated off of it and during the next 2 weeks I lost another 10 pounds by the time I was off it. My neurologist then put me on topamax and I lost another 10 pounds! (A total of 35 pound weight loss, none of which I could afford to lose.). My gastroenterologist figured out the problem and I went back to my neurologist and asked him why, after a 25 pound weight loss on Trokendi, why would he put me on topamax. He cocked his head for a bit, obviously thinking, and then much to his credit he said, “I have absolutely no idea what I was thinking! I’m sorry.”
As far as my migraines were concerned, I only noticed a minimal improvement, but it’s possible that I hadn’t been on it long enough to assess the full effect.
I don’t know if this helps you at all or not, but you asked for information about anyone’s experience with topamax. Good luck and stay safe.

I can identify with you. I have major back and neck issues as well. My migraine trigger is right at the base of my skull on the right side. Whenever the back of my shoulder or my neck is even slightly tight I can feel it teasingly pulling my trigger. Sometimes when I massage it, it helps and no migraine; other times a massage will trigger an immediate, full- blown migraine.
There are 2 things I will highly recommend:

  1. Diclofenac Gel. It’s prescription. I don’t know how my it would cost you (it shouldn’t be too much because it’s generic), but it’s definitely worth it. And don’t go by the dosage card they have in the box! That’s enough to take a bath in! Just a small dot on your finger will cover a larger area than you would imagine and you can always apply more. 2). If you can’t get a prescription for the Diclofenac Gel or you can’t afford it, try the line of Salon Pas products. They have both a lidocaine gel and a pain relief gel that work really good and they have large lidocaine patches, pain relief patches as well as a pain patch with menthol. They are on the expensive side, but if you’re going to try one, my personal preference is the one with menthol. They also have smaller patches (about 2”x4”) that are very affordable. You can get them at CVS, Walgreens, WalMart. At COSTCO or Sam’s Club you can get a box of 40 patches for between $10-15.00.
    Hope this helps. Stay safe.

If you are under stress, you may be having a muscle tension triggered migraine. There are 2 things I would highly recommend that may be of help:

Diclofenac Gel. It’s prescription. I don’t know how my it would cost you (it shouldn’t be too much because it’s generic), but it’s definitely worth it. And don’t go by the dosage card they have in the box! That’s enough to take a bath in! Just a small dot on your finger will cover a larger area than you would imagine and you can always apply more. 2). If you can’t get a prescription for the Diclofenac Gel or you can’t afford it, try the line of Salon Pas products. They have both a lidocaine gel and a pain relief gel that work really good and they have large lidocaine patches, pain relief patches as well as a pain patch with menthol. They are on the expensive side, but if you’re going to try one, my personal preference is the one with menthol. They also have smaller patches (about 2”x4”) that are very affordable. You can get them at CVS, Walgreens, WalMart. At COSTCO or Sam’s Club you can get a box of 40 patches for between $10-15.00.

Good luck. Stay safe.

Just in case there’s any muscle tension triggered kind of migraine, there are 2 things I will highly recommend:

Diclofenac Gel. It’s prescription. I don’t know how my it would cost you (it shouldn’t be too much because it’s generic), but it’s definitely worth it. And don’t go by the dosage card they have in the box! That’s enough to take a bath in! Just a small dot on your finger will cover a larger area than you would imagine and you can always apply more. 2). If you can’t get a prescription for the Diclofenac Gel or you can’t afford it, try the line of Salon Pas products. They have both a lidocaine gel and a pain relief gel that work really good and they have large lidocaine patches, pain relief patches as well as a pain patch with menthol. They are on the expensive side, but if you’re going to try one, my personal preference is the one with menthol. They also have smaller patches (about 2”x4”) that are very affordable. You can get them at CVS, Walgreens, WalMart. At COSTCO or Sam’s Club you can get a box of 40 patches for between $10-15.00.

Good luck. Stay safe.

I’m not sure what kind of headaches but I have been dealing with one for 6 wks. It’s gone in the morning. Gets worse during the day. Focus is on the left side of my head moves up to top and around back slightly. Eyes seem involved. Although very little light if any sensitivity. Went to the doctor. All they did was send me to Optometry. They didn’t find any thing. ?Migraines?