12 answers

Needing Help/info/advice About Topamax

I have gotten such great advice from this group that I wanted to ask about a current issue that I am having. I am really hoping that you can all help with this as well.

I have been having migraine headaches for about 2 months now. These are not like any other headaches that I have ever had. I have had migraines in the past, but not like these new headaches. These new headaches come on very suddenly, without warning, and feel like I have been hit in the back of my head with a hammer. They are so severe that I completely lose consciousness.

I have been to see a neurologist who has told me that until further notice I cannot drive (that has proven to be a complete nightmare on my schedule, but that's another story). I will be having an MRI, a CT scan, and an EEG. I have also been referred to a cardiologist, who wants me to have an echo-cardiogram and a stress test. Meanwhile, I have been on Topamax for almost a week.

Since starting Topamax, I do not feel "normal." I am wondering if there is anyone else out there in Mamasource-Land who is taking this medication who can share with me about how they cope while taking this.

I have started journaling about my experiences. So far, I have noticed that I feel tired more often, lethargic, food tastes terrible (almost spoiled or bad), food has a strange texture (I feel like I'm eating mud, sand, rocks, dirt, paste, glue, etc.), I feel more disoriented, I have a feeling like I'm in slow-motion too. I can tell that I have pressure in my head like a headache, but I don't seem to feel pain, or I just don't care that I have a headache. I almost feel apathetic to everything around me. It is really rather frightening to think that this medication could be just masking the pain. What if I really have something serious going on, but the effects of the medication is just making me blow it off?

Please help me? What can you share to help me right now?

Oh, I am not really interested in hearing from anyone who is taking this medication for seizure disorder, as that is not my reason for taking it (and please don't think I am being rude for saying that). I am mainly interested in hearing from those who are taking it for migraines.

Thanks in advance.

What can I do next?

Featured Answers

I took Topamax for migraines for a short while and hated it. I didn't feel normal either. My mind was so fuzzy that I was unable to function normally. I went back to the preventative that I have taken in the past--a beta blocker, Corgard. I feel totally normal on that and I rarely, if ever, get a migraine. When I do, I can usually sleep it off rather than having to medicate it. By the way, the doctor that I saw was the head of the pain clinic at Cedar Sinai--a distance from my Long Beach home, but worth it. I had been getting migraines about 6 days out of 7. I am now almost migraine-free EXCEPT when I am under EXTREME stress. Good luck.

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I also have taken Topamax for migrane, it worked for a long time. The Dr. messed around with the dosage a bit to find what would control the pain and give me the least side effects. Anything carbinated tasted like cr*p. I took that as a sign didn't need to drink soda anymore, better for overall health. Some foods would suddenly start tasting bad and I would stop eating in the middle of the meal, actually got to a point food didn't interest me in the slightest, I lost about 30 pounds without trying. I looked at it as another bonus.

The not feeling like "you" anymore could go away as your body adjusts, or if the dosage is adjusted. Some Drs. know that Topamax works for migrane however they are not sure of the dosage or in what dosages it comes in. there is a 15mg capsule, smallest dose available, my Primary didn't know it existed I had to tell him.

I will tell you that I am no longer taking it. I stopped it to see how the migranes were since I wasn't having any any more, and they stayed away for about 3 years. I tried to go back on but it just didn't work for me any more. I now do Accupuncture and this is really working at this point. I also tried Botox and that treatment I think was going to work, however insurance issues made it impossible to pursue more than one go around.

I hope this helps. I'd say give it about 6 months of a try before you give up. And if the side effects are too much ask for a lower dose.

I have been on topamax for about two weeks and have experienced severe bouts of exhaustion and I always feel tired. I asked my dr about it after reading through some info on the internet and they are all side effects related to the medication. I have severe migraines so it is worth it for me to be on it but I would check with your dr to make sure your not having an allergic reaction. I hope this helps.

I have been having migraine headaches for almost 4 years now and my doctor has ran every test possible. The only thing they came up with was that I have thyroid disease. I was put on topamax for 2 months and it worked wonders for me until it made my left arm go completely numb. So I stopped taking it. I never experianced any of the same symptoms that you are maybe either ask for a smaller dose or another anti- seizure medication to help.

I took Topamax for migraines for a short while and hated it. I didn't feel normal either. My mind was so fuzzy that I was unable to function normally. I went back to the preventative that I have taken in the past--a beta blocker, Corgard. I feel totally normal on that and I rarely, if ever, get a migraine. When I do, I can usually sleep it off rather than having to medicate it. By the way, the doctor that I saw was the head of the pain clinic at Cedar Sinai--a distance from my Long Beach home, but worth it. I had been getting migraines about 6 days out of 7. I am now almost migraine-free EXCEPT when I am under EXTREME stress. Good luck.

http://www.askapatient.com/viewrating.asp?drug=20505&...
http://community.babycenter.com/post/a273595/anyone_take_...

Here are links to a couple of sites I found on side effects of Topamax. It sounds like you are suffering side effects of this drug. I suffered from migraines. I started taking Feverfew, an herbal supplement on the advise of a friend who also gets migraines. I took one a day for a couple of months and scaled back to the occasional capsule. I also got more regular chiropractic adjustments which have made all the difference in the world. Everyday in the shower I turn the water on hot as I can stand for a minute, then cold as I can stand on my head, neck and shoulders. Go back and forth several times. The heat stimulates circulation to the surface, the cold stimulates circulation deeper. Do shoulder rolls everyday backwards and forward. Magnets have also helped me. You can get a magnetic necklace that looks like pearls. They are great.

Check out your diet. Nitrates are big problems-deli meats, hot dogs, sausage. If you drink diet soda or eat anything with aspartame STOP! It's poison and affects your brain. Deep breathing helps. Be sure to drink lots of water everyday. Staying hydrated is very important. Acupuncture can also be very effective. I rarely get migraines any more.

A., I have been on Topamax for approx 14 months as a migraine preventive agent and can relate to many of your concerns. Without knowing the dosage and time of day you take the medicine I am not sure if you would be able to adjust it, but the medication is known to cause drowsiness/tiredness; maybe you can take the majority of the dosage in the evening before bedtime. Hopefully your MD has you working up to the full recommended dosage of 100mg/daily and not jumping into it all at one time as your body needs time to adjust to the side effects. I take 50mg both in the AM & PM, however my sisters doctor has her taking 100mg before bedtime. Here are two links that I found not long ago that may help you to see the side effects that have been blogged by others or listed WebMD.com :

http://www.medications.com/se/topamax/anxiety

http://www.webmd.com/drugs/mono-6019-TOPIRAMATE+-+ORAL.as...

I also suffer from an increase in my body temperature, almost as if I have an internal fire burning within me, where I am unable to cool down, I am not at the age for menopause and I believe that it is part of the side effect that causes your body to decrease its sweating capabilities. Anxiety and inability to focus my thoughts also affect me. One of the perks of the RX is that I no longer drink soda, where I used to drink between 6-12 cans of non-diet soda daily. Drink large quantities of water to help out with the cotton mouth that will no doubt plague you.

I would also put in a call to your MD to ensure that you are not experiencing too severe a case of side effects in conjunction to your medical history. Best of luck!!

I have suffered from migraines basically since I went through puberty. So, doctors have tried many different things to help me. Topomax was absolutely the worst!! I felt almost ALL of what you are feeling. It was an extremely awful time...i had a 2 1/2 yr old boy & a 6 mo old baby boy and I felt like I couldn't pick them up or anything. Did I mention it was absolutley, horribly awful??? The only way it seemed to help with my migraines is that it took the very edge off but the migraines definately were still there. I wanted to stop taking it...but you cannot just stop cold turkey. You have to be weened off slowly, under the care of a dr. I will keep you in my prayers, because I know how horrible the migraines are, and also taking the topomax! Migraines can be caused by all kinds of sources...don't know if your dr.'s have discussed this with you-but not once did a dr. talk to me about diet & exercise & things to help. So, if not, please feel free to contact me and I can let you know what I have learned over time. However, migraines are extremely frustrating (aside from the obvious) because different things help different people.......Also...are they absolutely sure that they ARE migraines?

I too take Topamax for migraine headaches. I take 150 mg daily, and my doctor recommeded that I take it at night before I go to bed, not to take it during the day. I also worked up to the 150mg.....took 25 mg for a week, then 50 mg for a week, etc. I've been taking it for about a year. It also affected my taste for food---it lowered my appetite, and I lost my taste for soda and alcohol but it didn't seem to affect any other food. After being on it for a year, I still have a reduced appetite, and don't enjoy soda or alcohol. I haven't noticed any other mood-related side-effects. Best of luck to you.

I totally get the migraine problems I have had them since I was very young. Sometimes worse then others. I have not taken Topamax but this is what is listed on there website.
What are the common side effects of TOPAMAX?
In clinical trials, they occurred more often during the early stage of treatment and were generally mild to moderate. More serious TOPAMAX side effects are described in the Important Safety Information section.

Numbness and tingling
This is known as paresthesia and is the most common side effect of TOPAMAX. People have described this as numbness or "pins and needles," most often in the arms or legs. More people had paresthesia during the early stage of treatment; however, it didn't stop most people from taking TOPAMAX

Fatigue
Some people may feel tired while taking TOPAMAX. More people reported fatigue during the early stage of treatment.

Taste change
Some people on TOPAMAX may have taste changes where food or drink tastes differently. This has been reported with carbonated beverages, for example.

Weight loss
Some people may have weight loss while taking TOPAMAX. This seems to be related to the dose of TOPAMAX taken.

Difficulty with concentration/attention and difficulty with memory
TOPAMAX may make it hard to concentrate. Some people may have memory recall issues. This reaction varies, but people have described it as "difficulty finding the right word" or "losing my train of thought."

Talk with your healthcare professional if you are feeling any symptoms or have additional questions. While side effects can be frustrating, they were not unusual when first starting TOPAMAX.

Other common TOPAMAX side effects are loss of appetite, nausea, and diarrhea. Your healthcare professional is the best person to talk with about your side effects and can adjust your dose of TOPAMAX if necessary.

Hope this helps. Good luck with the doctor.

Hi. For now I would not stop taking the medication. If it is masking the pain that is a good thing because the doctors are going to put you through all these tests and it would not be easy or very comfortable to do it while in severe pain. I hope they find what is wrong and it is not serious.

OMG, that sounds horrible! I'm sorry, I hope they can figure out what's going on so you can get off that med.

So sorry to hear you are in such distress! If your pain is gone for now, that is a plus - you can have some normalcy with your family. Sometimes while you are waiting on answers from your doctor, you can look within yourself to figure out environmental/emotional triggers that may worsen how you feel or figure out little things to make yourself feel a lot better (even if it is just for a little while).

I am taking Topamax for migraines for 3 months now. I have had regular "bad" headaches since I was 13 (my doctor always dismissed it!), and they got worse with age until after my third child -I could no longer stand it anymore and felt as though my head was going to burst open! I was having multiple symptoms along with the dehabilitating pain and saw a new doctor and was finally, at age 33 diagnosed with migraines. They haven't been easy to control...I have tried 3 different types of blocker pills(taken daily) and 3 immediate migraine pain killers.
The current combination which seems to be working okay, is Topamax , and Imitrex-when needed. I started out on Topamax at 25mg a day for two weeks, being sure to move up in dosage slowly because the side effects were very evident! My main complaint was that I had a very heavy, tired feeling all day and mildly numb, and I had a lot of tingling in my hands and legs(knees down). I too, had some taste change in food but not that significant. It was only noticable in the first few weeks. I also have that feeling of pressure in your head...and actually had begun to get used to it and had forgot about it until now when you mentioned it!
Then I moved up to 50mg a day, which I take at night. But I don't have complete relief from this pill. I still get migraines, just not nearly as frequent or maybe not as bad of a migraine. But I still have the need to take Imitrex once in a while. My doctor said I would move up in dosage slowly if needed and even take one pill in the morning.
I did notice a decrease in the side effects that were bothering me, but they still have not fully gone away. I am dealing with these annoyances because the other blocker pills I tried had no value for me and I see that Topamax does. It is much better than living with the horrible migraines I feared! I personally am going to try to trust my doctor and hope he can help. Meanwhile, I also am researching migraines and learning about how to care for myself also. Best of luck to you in finding the changes that will make you feel whole and healthy again.

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