View Full Version : trouble on topamax

February 18th, 2006, 11:21 AM
dr garcia i wonder could you give me some advice as i am in trouble with topamax? I started MWO last autumn on 25mg of topiramate and had great success. Side effects were minimal and just the usual ones ie nausea and some tingling of my hands and toes particularly on the left hand side. In winter I titrated up to 50mg because i slipped one night. I took this in the form of two 25mg tablets and again there were no problems. Then at the beginning of January I called into my doctor for my repeat prescription of 50 mg tablets and called into the pharmacy to collect them. This time instead of giving me 25mg tablets and telling me to take two I was given an orange 50mg tablet and told to take one and that was fine by me. I went home took the tablet sat down with a cup of coffee and about 20 mins later I had this strange feeling that something very bad was about to happen to me. Seconds later I had a near collapse episode. I was breathless and the entire left side of my body went numb. My left side of my face went numb too particularly my forehead and above my lip. I was clinging to my partner for dear life because I thought I was having a stroke. In ten minutes the feeling passed then in about ten minutes another severe attack then it passed then another and so on. On one level I wanted to go to the ER straight away but on another level I didnt because of personal reasons connected to my employment- Its not the place for me to have an alcohol problem. I sat it out although I was terrified and eventually fell asleep.The next morning I thought it was over but then mid morning I had another big attack. I couldnt cope any more and neither could my partner and I went to ER. I described my symptoms but didnt mention alcohol or topiramate - I just couldnt. I had an mri body scan an echo cardiogram a 24 hour holter monitor and bloodtests that included fbc u+e and fasting glucose and cholestrol. All results were clear and by the beginning of day 4 my symptoms finally went. I didnt touch topiramate for two weeks then I had an alcoholic slip and I couldnt cope with that again so I took a 25mg tablet quartered it and took the smallest piece to see what happened.I had another identical attack but this time it was all over in 30 mins. I gave it another week tried one more time and ditto. After that i called it a day and I am off the drug.Theres no words to say how devastated I am because I loved that drug. I havent been to my doctor yet because this happened on the evening of my last appointment and my next one is not due to march. I have a good relationship with him and I know he will help me sort this out but I am his first patient on topiramate and he had to do a lot of reading. Once I got over the shock I started reading and this is where I have run into problems. No matter how much I read I cant find my symtoms. Its all about kidney stones and glaucoma. The nearest neuro symptom I can find is numbness and tingling but I always had that and anyway that wouldnt come close to what I had - it would be like comparing a gentle breeze to a hurricane. Could you help me? The questions I am trying to answer are

1 What was it? I thought I was having a stroke but all tests were clear and I am 100% healthy today.

2 If it was a drug reaction why now? Last autumn I could understand it when I started the drug but not now.

3 The attack happened 20 mins after I took the 50mg orange tablet for the first time so I presume its related but I was on 50mg for weeks in the form of two 25mg tablets.Surely its the same thing?

4 And this is the big issue that is killing me.Why cant I get back on the drug? I was sitting comfortably on 25mg for months day after day and now I cant tolerate a crumb of a tablet without having these symptoms.

I can find nothing on the web that even comes close to giving me answers althoug logic tells me that what happens one person will eventually happen another. Could you give me some advice as I know you deal with drug day in and day out. Even if there is no definitive medical explanation for this I would appreciate any thoughts or suggestions you might have as I have hit a brick wall. Obviously I am redoubling my efforts in the other aspects of MYO and my drinking hasnt totally spiralled yet but its not good either. I am slipping and crashing all over the place something that didnt happen on topiramate and I fear the inevitable. Thanks.

February 18th, 2006, 06:36 PM
Herosa, RJ here.

I have emailed Dr. Garcia and asked her to look into this question, as it's very alarming. Alarming also is that there *is* no orange 50 mg. Topamax tablet (opaque capsule only) at least that I know of, but perhaps an MD or pharmacist can confirm whether or not this is true. You'll see from this chart (http://medguides.medicines.org.uk/displaypage.aspx?t=medicine&i=43) that the orange Topamax delivers 200 mg. of the medication. As we've mentioned so many times, it's absolutely critical to titrate up slowly, and of course you already know this.

Is it possible you were given too high a dose and went from 50 mg. to 200 at one time? What does your pill have stamped on it? I don't believe a true generic form is yet available, but I have seen this version (http://www.novopharm.com/product_images_e.asp?id=976) from Canada.

I also don't understand the reaction when you attempted to take the subsequent lower dose unless your system has become overly sensitized to the medication because of the earlier incident. (Or you are reacting to the dye in the pill.) You had side effects when you first started with 25 mg. so you may be quite sensitive to the medication in general, although the slow and appropriate titration you followed earlier seemed to work well. I'm obviously unqualified to address the true nature of this problem, but again, I have informed Dr. Garcia of your situation.

Hang in there.


February 19th, 2006, 12:15 PM
Thanks for your reply. I appreciated it. My tablet has the letters top on one side and 50 on the other. Regarding the colour my months supply came in a little brown plastic glass bottle and the tint of the container made them appear pale orange. When I read your post I took one out and held it up and you are right it is more yellow so I am sorry for the confusion that caused. I only handled the 50mg tablet once and that was the evening of the attack. Since then I have been trying to get back on the 25mg tablet. Concerning the dye ... I dont know....maybe. I have never been allergic to anything before , drugs , food, creams, jewellry. I know that there is always a first but it doesnt feel likely for my body if you know what I mean but who knows? The one thing I picked up on was the possibility that I have become overly sensitised to the med because of this incident and that is why I cant take it at all now. That is how it feels to me too. In crude layman terms it feels that the 50mg tablet blew or banged something in my body and now when I go near the tiniest amount of the drug my body says no not that again. What I wonder is- how long does this over sensitivity last? If I give my body a break of a few months I wonder could I tolerate it.
I would spend 2006 trying to introduce it crumb by crumb if I thought it would work. Obviously if I was using this drug to treat a minor condition I would bin it and forget about it but I am not. Its been my one passport out of alcoholic hell. It took me years to find this and I dont want to let go. The only good thing I suppose is that I didnt have a life threatening reaction. my airway didnt swell my eyes didnt swell and every test is clear.I didnt blow anything so whatever it was it was only a sensation however bad. Thank you for emailing Dr garcia. I will wait and see what she says as well. Keep your fingers crossed she gives me some glimmer of hope about this drug. Thanks again.

February 21st, 2006, 12:28 AM
Hi, Herosa.

1. What was it? I thought I was having a stroke but all tests were clear and I am 100% healthy today.

Herosa, you described an incident that sounds similar to the experience of one of my patients. Like you, my patient had taken her medication with coffee (and on an empty stomach) and had very similar results. It sounds to me like you had an adverse reaction--but it wasn't an allergy, and did not involve a seizure. Was your stomach empty when you took the medicine? It could have been the combination of having no food in the gut, a caffeine rush and introduction of Topamax all at once triggering a panic type reaction. The receptors for panic attacks are located in the same part of the mid brain treated by Topamax--and are also affected by alcohol. (I don't know if you had been drinking the night before, but this could have exacerbated the problem). Also, was there a period in which you had run out of the medication, even for a short time? This could mean you hadn't been able to withdraw from it in the most beneficial way and it may have created an adverse effect when you started taking the 50 mg dose.

The "fight or flight" reaction in a panic attack is the same as if the "foe" were completely real to you--your brain receptors don't know the difference. So they wreak havoc throughout your body, affecting cardiovascular, neurological and other systems.

2. If it was a drug reaction why now? Last autumn I could understand it when I started the drug but not now.

You seem highly sensitive to this medication. It's difficult to know for sure, but the conditions under which you took it may be responsible for this event.

3 The attack happened 20 mins after I took the 50mg orange tablet for the first time so I presume its related but I was on 50mg for weeks in the form of two 25mg tablets. Surely its the same thing?

Yes, the dosing should be the same using two tablets, but in answer to your next question, you had established a specific pathway for the medication. Just like an allergy: once the "memory" is there, similar symptoms can occur.

4. And this is the big issue that is killing me. Why cant I get back on the drug? I was sitting comfortably on 25mg for months day after day and now I cant tolerate a crumb of a tablet without having these symptoms.

You may not be able to use this medication any longer, especially if you are still drinking. I can tell you're disappointed, but it sounds like you may want to give some thought to re-defining the program and re-defining your hypnotic messages: e.g. "Life is better for me now that alcohol is out my realm." You can consider using Campral or Naltexone and be aware that a number of new medications are under development at this time. Many individuals in my practice take Campral and find that with the other components of MWO it gives them the power they need to deal with the craving.

Please follow up with a health care provider. I understand you may be in a difficult position to do so, but it's important that you learn what happened here and do not jeopardize your health any further. I would really urge you to let go of the Topamax if it's causing these problems and look to other solutions for getting healthy.

I hope this helps.

--Dr. Garcia

February 22nd, 2006, 05:03 PM
Thank you Dr garcia for your reply. I can imagine how busy you are and I am grateful for the time you took to write this. I was kind of stuck and I was very interested in your reply. It makes more sense to me now. I am very disappointed obviously but c'est la vie and I will take your advice on board. Thanks again-