[Joselita]

Hey Everyone.

I just wanted to let the folks that take Topamax know about a potential side effect. The “technical term” my doctor used for it is 'medicinal alopecia', and he said that it affects 3% of people taking the medication. And....yep! You guessed it; I am in that 3%.

In most cases, it is reversable and takes about 5 months for the hair loss to stop once you get off of the medication. I am glad that this was the case for me. I am going to be trying a different medication (and sorry....can’t remember the name, cant read this writing on the script, and will probably get it filled this weekend or Monday at the latest) that he said is “an oldy but a goody” and that people who responded well to Topamax usually respond well to this medication too. I responded well to Topamax, I just couldn’t handle having hand fulls of my hair come out all of the time.

So, I just wanted to let everyone know, that if you are taking Topamax and you start having LOTS of hair start falling out....you aren’t crazy, and it might not be the RSD causing it. Go talk to your doc and let him know. I have been taking Topamax for quite a while now (matter of years), but this losing hair thing is something that wasn’t going on at all, and then started ...and got worse pretty quickly seemingly out of the blue.

If anyone is curious, I will let you know how this new med works for me (and what it’s name is. LOL).

Take care.....and I hope everyone is having an OK time through all of these weather changes going on.


Jose

[dreambeliever128]

Thanks for the info. I have some here but haven't taken any in a long time. It might be the one I started losing my hair with.

I read up on all of my meds completely. If they cause hair loss and considerable weight gain, I go back to my Dr. and say no way. He's ok with it. He's a stickler for people trying to keep their weight down to stay in good health so he's ok with it.

I took that Marilax and gained about 7 lbs. in one week and read up on it and threw it out. It talked about considerable weight gain on it but I didn't think it would be in one week. Now I find every website that list all of the side effects on any med before I try it. Marilax is now non-prescription and I am wondering if the ingredient was taken out of it that causes the weight gain. I won't try it though to see.

I saw what Noravasc blood pressure med did to Bill so now I talk to anybody I know that's on blood pressure meds and tell them to stay away from it. Some people don't stop to think that attitude changes, weight gain, hair loss, and other things are caused by meds at times.

Your hair will come back, mine did. I lost most of mine in the front of my head near my bangs. My mom lost hers there and we use to think it was from hair color but I know now it was from some of the meds she was on.

I think in a desperation to get better and pain free we just don't think to ask the Dr. or read about some of these meds.

I hope that new med does the job for you without the bad side effects.

Ada

[jtl22002]

Hi,
I just read your post and I have been on Topamax since January of '08. It is the ONLY medicine that has helped my migraines and I don't want to give it up if I don't have to. I want to know about your knew/ old medicine that your dr is putting you back on. The oldie but goodie. Does it cause weight gain? I have lost 20 lb on Topamax...20lb I didn't need to lose but I don't want to gain back either.
I just started to lose some of my hair in the summer and it could just be the winter coat I was losing because it has slowed down now that winter is on its way back here in WI. I am going to try to wait it out.....I just got back from my hair stylist and she said I am in no danger of going bald. Good thing.
I really like Topamax and hope that the hair loss is just my winter coat but incase it isn't I would really like to know what your other medicine is.
Thank you.
Jennifer

Originally Posted by Joselita

Hey Everyone.

I just wanted to let the folks that take Topamax know about a potential side effect. The “technical term” my doctor used for it is 'medicinal alopecia', and he said that it affects 3% of people taking the medication. And....yep! You guessed it; I am in that 3%.

In most cases, it is reversable and takes about 5 months for the hair loss to stop once you get off of the medication. I am glad that this was the case for me. I am going to be trying a different medication (and sorry....can’t remember the name, cant read this writing on the script, and will probably get it filled this weekend or Monday at the latest) that he said is “an oldy but a goody” and that people who responded well to Topamax usually respond well to this medication too. I responded well to Topamax, I just couldn’t handle having hand fulls of my hair come out all of the time.

So, I just wanted to let everyone know, that if you are taking Topamax and you start having LOTS of hair start falling out....you aren’t crazy, and it might not be the RSD causing it. Go talk to your doc and let him know. I have been taking Topamax for quite a while now (matter of years), but this losing hair thing is something that wasn’t going on at all, and then started ...and got worse pretty quickly seemingly out of the blue.

If anyone is curious, I will let you know how this new med works for me (and what it’s name is. LOL).

Take care.....and I hope everyone is having an OK time through all of these weather changes going on.


Jose

[Summertime]

Be careful with Topamax if you are prone to kidney stones. Topamax can increase your chances of getting kidney stones.

[CZZ74]

Hi Im with Ada, topamax even though I too had major hair loss and thought it was the rsd until now, is the only med that controls my migraines which I never had prior to RSD. If I accidently forget my am or pm dose of topamax a migraine begins that is how effective topamax is for me. So if you are suffering with severe migraines, mine were sending me to the er reguarly, I would consider topamax even though the side effects can be severe. CZ

[Franny]

I also took Topamax and got off of it because of nausea. It was bad. I still have nausea, (not as bad) and my new doc has given me something for it. Thank God. I am not sure what is still causing the nausea but it did get a little better after I got off Topamax. As far as hair loss, I don`t know what is causing it, but I shed like a dog. I bought clip in hair extensions to fill in the hair. The only problem is if my hair gets too thin, I won`t have anything to hook the clips to! Oh well, I guess my hair should be the least of my worries, but if I have to constantly deal with this pain, I wanna look good!
God bless all of you and I hope you will find a smile today!
Franny

[Debbie V]

We tried me on topama a few years ago, I had major repitory problemswith it as isn resp arrest. Now for the migraines I have 3 to choose from:
Imitrex injections: work fairly well but doent seem to hold it for long
Migrinal: is a nose inhailer as long as get it as soon as see signs and do 2 puffs in each works well.
Relpax; great, amost better than anything else cause actually totally gets rid of it.
the new stuff cant think of the name, advertoised alot now, starts with a T: not work very well at all
Just wanted to put in my two cents.

Blessed Be
Deb

[dennyfan]

I take Topomax but thankfully have not had this side effect but it is good to know. I also take Myralax everyday but I havent had any weight gain on it. And I have taken it boith over the counter & presripction. Because my new insurance will still pay for it as a prescription. Which is great because the stuff is horribly expensive when you have to take it everyday. I took Neurontin & thats were I gained my weight. I gained 20 pounds on that nasty stuff. I lost it between a horrid flu & taking topomax. Hope everyone is doing good.
hugs, Denny

[candlecue]

You said in your response to hair loss your physician told you it would take about five months. Is that to stop loosing or grow back? I quit taking Topomax in October, and I am still loosing a lot of hair, I would say the hair loss started in May and has only gotten worse, along with the texture of my hair etc. Also I have dandruff like symptoms that were never present before. I have seen dermotologist and am scheduled to see "the hair specialist in the world" but not until June, well thats a long time and I am not sure if I will have any hair by then. I was taking Topomax for approx 2 years and was on about 200mg for about a year. In addition to that I was taking yaz both medication cause scalp hair loss and that is what I am experiencing. I have had my hormones tested, my thyroid everything. And I am currently taking no medications. Recently I found out that my liver enzymes are a little high. Not sure if that has anything to do with it. Anything about my situation seem familiar or can you offer me any hope. you have no idea how much I would appreciate it.
CLP

Originally Posted by Joselita

Hey Everyone.

I just wanted to let the folks that take Topamax know about a potential side effect. The “technical term” my doctor used for it is 'medicinal alopecia', and he said that it affects 3% of people taking the medication. And....yep! You guessed it; I am in that 3%.

In most cases, it is reversable and takes about 5 months for the hair loss to stop once you get off of the medication. I am glad that this was the case for me. I am going to be trying a different medication (and sorry....can’t remember the name, cant read this writing on the script, and will probably get it filled this weekend or Monday at the latest) that he said is “an oldy but a goody” and that people who responded well to Topamax usually respond well to this medication too. I responded well to Topamax, I just couldn’t handle having hand fulls of my hair come out all of the time.

So, I just wanted to let everyone know, that if you are taking Topamax and you start having LOTS of hair start falling out....you aren’t crazy, and it might not be the RSD causing it. Go talk to your doc and let him know. I have been taking Topamax for quite a while now (matter of years), but this losing hair thing is something that wasn’t going on at all, and then started ...and got worse pretty quickly seemingly out of the blue.

If anyone is curious, I will let you know how this new med works for me (and what it’s name is. LOL).

Take care.....and I hope everyone is having an OK time through all of these weather changes going on.


Jose

[MominPainRSD]

I'm SO glad I read this......I was about to switch to Topamax. I currently take Inderol (Propanerol or something like that). I have been taking it for years for migraines long before RSD. The problem is I think it is affecting my blood pressure negatively now that I have RSD. It is terribly low at times (80/40) and I feel awful and have NO energy.

I will say, for migraines, it worked very well for me. I went from getting 3-4 a week down to 1-2 a month. I take Maxalt PRN when one does come on. Thanks for the info about the hair loss. The RSD causes enough of that in me.....I don't need any more from meds!!!