April 10th
2008
12:31 PM
I posted this on Mar 15th regarding my experience with Topamax...
I took Topamax for only 4 days. I ended up in the ER on Feb 22nd because I felt like I was going to pass out, getting dizzy, couldn't concentrate or think, numbness, rapid heart beat, shortness of breath and this was intensified by anxiety from all this stuff going on. I stopped taking it immediately. I have had episodes of these same side effects since then. I had these side effects last week and missed 3.5 days of work. I have been doing pretty good this week but today I had to leave work because the same side effects came back. I had to have someone come pick me up form the side of the interstate half way on my way home because it got so intense I could not drive. My doctors have done blood work and I am waiting for the results.
Since then, here is an updated on my side effects and what has been found by my doctors. I really hope this helps someone since this was very devastating for me. It got so bad I had to go on Medical Leave from work due to the side effects.
I had 10 tests run on my blood and tests and pictures done on my heart and everything checked out to be normal. Apparently since this medicine messes with the chemicals in your brain, it also has the capability of turning on anxiety, depression, panic attacks, etc. My primary care doctor, my neurologist, my cardiologist and a stated licensed counselor/therapist all have diagnosed me with anxiety leading up to panic attacks. Basically what I was told by my counselor was that my level of anxiety in my brain was turned on so high, it didn't know to come back down after I stopped the medicine. Now anything can set it off and it's quickly escalates into a panic attack without control. I was so bad that I was having anxiety/panic attacks about merging into traffic, going to work, going through the drive thru at McDonald's, going to WalMart and just anything in general. I started a medicine that controls anxiety and I have been on it for a week. Although I still get anxiety, I am able to control it and it's not escalating into the panic attacks. The best thing is with this type of medicine is that it can take "a couple of weeks" before it's built up into my system, so this should take care of it. I was advised with some counseling to learn how to control my anxiety and some medicine, this can be taken care of. I just have to allow my brain to get the levels of anxiety back down to normal levels and then I can eventually stop taking the medicine.
-- By eriknokc | Reply | (2) replies | Private Message me
March 15th
2008
12:46 AM
I took Topamax for only 4 days. I ended up in the ER on Feb 22nd because I felt like I was going to pass out, getting dizzy, couldn't concentrate or think, numbness, rapid heart beat, shortness of breath and this was intensified by anxiety from all this stuff going on. I stopped taking it immediately. I have had episodes of these same side effects since then. I had these side effects last week and missed 3.5 days of work. I have been doing pretty good this week but today I had to leave work because the same side effects came back. I had to have someone come pick me up form the side of the interstate half way on my way home because it got so intense I could not drive. My doctors have done blood work and I am waiting for the results.
-- By eriknokc | Reply | Private Message me
January 21th
2008
9:27 PM
I had been dealing with numbness in my hands and feet for about a month (I've been on Topamax for maybe 2 months now, maybe 1.5 months...) and I am happy to deal with that. Anything is better than the migraines that I had, and anything is better than waiting for the next migraine to start.
But for the past few days, I have been dealing with a total shortness of breath. It's like I can't catch my breath, in a way... or, as my mom put it, can't really get a "fulfilling" breath. I am constantly yawning, but that's how I am getting to that deep breath, although it takes me 3 or 4 tries to get there. It's frustrating, and SCARY!
I called the Topamax number today, and the nurse said that the side effects should only last 3 months total, but 1.5 more months of this?! I can barely imagine 1.5 more hours!!!!!
-- By meghanmarie | Reply | (3) replies | Private Message me
January 6th
2008
10:50 AM
Haven't seen anyone mention any sexual SE's but I know I'm not imagining this. It's not a lack of libido but, it's as if my wiring has been disconnected.
A lack of sensation. Major bummer. I can live without sodas but not this!
That was my major reason for getting off the Topamax. My doctor was very incredulous about this being a SE of the Topamax but he didn't argue with me. I came across this site just looking to see if anyone else had experienced this. After getting here I can not believe all the things I have been brushing aside as due to something else. Stomach pain and diarrhea, severe GERD, depression and morbid thinking, oh and my gosh the trouble searching for words and connecting thoughts--I thought I was loosing it, shortness of breath and weakness that I was attributing to weight gain! I have only been on 25 mg a day for 6 months. The migraines did improve and the paresthesia in my hands subsided over time. But all this other crap that has slipped in and I have been passing off as aging or just wondering what else was up with my body and mind. Sheese! Thank goodness for this site! I am tapering off this crap-- and I feel like crap. Weakness and fatigue and a weird pain in the side of my head that is not a headache exactly. I hope I'm back to normal soon, this is awful!
December 28th
2007
8:04 AM
I am going to begin taking 25 mg of Topamax at bedtime tonight. After reading all of these posts I am a scared. I was prescribed Topamax for bipolar disorder. I am currently taking Lamictal as well. I always gain weight on psychotropic drugs and need to lose about 15 lbs (all of which I have gained over the course of being on Lamictal). Any who-my psychiatrist said that this medication may help counteract the weight gain I have experienced. Although I do not consider my self an overeater now. I do hope that it helps me to not like the taste of sodas though. I am addicted to Mt. Dew and caffeine, which I wouldn't mind stopping. Anyway, I am supposed to increase my dosage by 25mg per week until I reach 75mg per day. I am also supposed to go back and see my doctor before I increase the dosage beyond 75mg. I just hope I do not have the horrible side effects I have read here. Some of them I know I can deal with especially if they are temporary but the anxiety/depression/shortness of breath/lack of energy/morbid thoughts are the main ones that concern me. My psychiatrist said that with this medication I should drink plenty of water. He said that it could cause headaches and other side effects if I'm not sure to drink plenty of fluids with this medication. So, I am planning on hydrating myself really well today before taking it this evening. I'll post back and let you know how the side effects are going. Is anyone else on a combination of Lamictal and Topamax or on it for bipolar disorder? I'd like to hear more of your experiences.
-- By cmbandrwb | Reply | (6) replies | Private Message me
October 5th
2007
10:02 AM
I can't believe all of these posts, wow. I was starting to feel as though I was alone with all of the symptoms I was experiencing. I started this drug 2 1/2 weeks ago at 25mg am/pm and am currently up to 75mg am/am. I have really bad chest pain/tightness and mild shortness of breath. As someone else had mentioned, pop is enhanced not dulled, seems as though its like pins on my tongue. I have been forgetting words but not too bad, just for a couple of seconds. The anxiety is the worst, sometimes I lay in bed and the chest pain will increase and I get so axious it feels as though I'm going to die. I went to the ER last night but they did an EKG and told me my heart was fine that the chest pain most likely was not related to my heart. (I'm a 22 year old male and have never had problems with my heart) These chest pains only started after starting this drug. I'm ready to try something else. This was the first drug I was put on for my seizures, my doctor said it could possibly help the seizures/headaches/weight. These side effects are just too much.
-- By czambrano | Reply | (2) replies | Private Message me
February 21th
2007
5:14 AM
I have been on 100 mg of topamax twice a day now for over three years. Most of the early side effects have worn off like soda tasting bad and the memory loss. I never had any hair loss. Also the weight loss has stopped and I did gain it back which really stinks. Anyway, the reason I was looking, was that in the last several weeks, I have been suffering horrible body aches and joint pain. My hands and knees hurt very badly. I am 39 years old and hate to think that arthritis has set in so quickly. And I know that I can't have the flu with no other symptoms and so often. Does anyone else have these symptoms? Also I wonder why these could have started after so many years of taking it.I have tried to wean myself off in the past and the migrains came back full force.
-- By cynex1 | Reply | (7) replies | Private Message me
January 9th
2007
12:11 PM
I am taking topamax and am suffering from shortness of breath. Does anyone else have the same side effect?
-- By gramsan | Reply | Private Message me
July 5th
2006
7:10 PM
I started topamax on 6/28/06, building from 25mg's to 100mg's for simple partial seizures and migraines. I'll have to say it has helped tremendously. I woke up every single day with a headache! Not anymore. All I have now, is a mild sinus headache here and there. I will say on the negative side, I have absolutely no appetite (although i stand to lose 30 lbs), numbness, tingling, memory dullness, bowel changes(yuck with bowel cramping) and my menstral flow is well off track! Has anyone else had any of these problems too? Oh and I definitely have shortness of breath. And I'm making sure to drink plenty of H2O!!!PLEASE RESPONDE!!!
-- By starlit_9 | Reply | Private Message me
July 4th
2006
7:09 PM
I took topamax for about a year. I was slowly up to 200mg a day.I had a period for 28 days. I was 44 than, my normal cycle last 1 to 2 days.I ask my nero about it and he said it couldn't be the medicine. I talk to my family doctor, we lowered the does by 25 mg and my periods went back to normal. During this time, looking back now at what others saw I went through many personality changes. But I figured my headaches were gone, I was losing weight life was great. And than I started getting shortness of breath it was gradual and than it became severe. I seen so many doctors for almost a year. I had several test done was told I had pulmonary hypertension, told I had a Paient foreman ovale.
This was all new, I had an echo 3 years prior. I ask every doctor I seen could topamax cause this they said no. I finally got sick of going to the doctors , I quit going ,I also stopped taking topamax and guess what I can breath again. I have no pulmonary hypertension but the PFO remains. I am now afraid to take any new medicine. I would rather have headaches, my friends and family say I am back to myself and I feel so much better. I wish I would have listen to myself when I started questioning could it be the medicine. This medicine may work great for some, but my family and I went through hell. I truely thought I would not see my kids grow up.
June 4th
2006
2:29 PM
After 2+ years on Topamax for migranes (25 mg am/pm) I started to have shortness of breath. Couldn't even walk a flight of stairs, and I am distance walker in great shape. After lot's of tests Dr.'s said it couldn't be a side effect since I had been on it so long. They were WRONG!. Quit and now a week later I am about back to normal. After quiting also feel no neck/back pain. Irritability gone also. I hope my migranes don't come back. So far no problem. But the side effects are worse than the migranes. Especially the SHORTNESS OF BREATH!
-- By scottandmary | Reply | Private Message me
November 5th
2008
11:30 PM
Nov 5 2008
-- By dfbdar | Reply | (2) replies | Private Message meI have been taking topamax since april of 2008, about 6 months now. Just recently I was increased from 50mg to 75mg for my migraines. I have short term memory loss, nausea, no appetite at all, shortness of breath, trouble sleeping, and all of a sudden terrible anxiety and panic attacks which started out of no where. I feel like my heart is beating out of my chest and I am going to die. It is horrible I cant stand it. I went to the ER and got the standard tests and they said my heart was fine and to follow up with my regular Doctor. No matter what I do I cant calm my self down it is just aweful. I am not sure I can live with these side effects, its too muc