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Dr. Bob is Robert Hsiung, MD,
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Posted by jasperwasper on June 24, 2003, at 21:32:34
In reply to topomax, posted by Ellen Brodie on April 19, 1999, at 15:58:40
Hey guys...I've just been reading your posts...I've experienced all that same things you all did. I had the MRIs the CAT scans etc. All the OTC drugs were worthless for me. One thing my dr. did say that I haven't seen posted yet (but I'm still new) is to stop using/drinking nutrasweet/equal/aspartame. Also, of course, cut way down on the caffiene. Has anyone else been told that stuff? Have you been told that topomax will make you sweat? I've had problems with headaches all my life ..I'm now almost 40. I won't have serious problems for a while, and then they will start up again...mine are not the typical/traditional migraine. Mine are more stress related???
Posted by Snoozy on June 24, 2003, at 23:52:25
In reply to Re: topomax (for everyone chatting 6-24), posted by jasperwasper on June 24, 2003, at 21:32:34
I don't know if I've ever been warned about the artificial sweeteners - I don't like the taste so I never consumed them anyway. But caffeine....(sigh) one of my great loves in life. I was really good about not having any for several years, but since I started having problems with excessive sleepiness I've been indulging more than I should.
I looked up Topamax on medline, and increased sweating is listed as a possible side effect. Here's a link:
http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/203085.html
When you say that yours are not like the typical migraine, do you mean that the pain is not like a typical migraine (stabbing, throbbing, nausea, vomiting, sensitivity to light and sound, etc)?
Posted by Snoozy on June 24, 2003, at 23:59:35
In reply to Topmax for Migraines, posted by Sprgrvr on June 23, 2003, at 17:02:37
I found this news article a friend had sent to me last fall about Topamax.
"Topiramate reduced the number of migraine episodes by half in more than 50% of patients taking 100mg/day, according to Dr. Stephen Silberstein, director of the Jefferson Headache Center at Thomas Jefferson University in Philadelphia.
The 469 migraine patients in the trial received topiramate at 50mg, 100mg or 200mg daily or placebo for 26 weeks. Those taking the 100mg and 200mg doses had the greatest response, and the 100mg dose was determined to be optimal in terms of efficacy and tolerability.
Specifically, with the 100mg dose, migraine frequency was reduced from an average of 5.4 to 3.3 episodes per month."
Posted by Sprgrvr on June 25, 2003, at 16:08:17
In reply to Re: topomax (for everyone chatting 6-24), posted by jasperwasper on June 24, 2003, at 21:32:42
I don't have traditional migraines either. I've never had the vomiting, stabbing, etc. I do have a sensitivity to light and sound and I have lots of triggers, mostly smells and sleep paterns. When it's really painful, I'll have very little memory of things that happened during that week. I will have the traditional migraine occasionally which will last for four days. I admit I do drink caffiene. I went two years without it, or any carbinated drinks for that matter, and it didn't make any difference.
Right now my doctor doesn't know if the blackouts are related to the migraines. All I know is that I overheat before I blackout. I've had my blood pressure tested, heart, hormones, all normal. So, I'm focusing on the migraines for now.
Posted by jasperwasper on June 25, 2003, at 20:20:16
In reply to Re: topomax (for everyone chatting 6-24) » jasperwasper, posted by Snoozy on June 24, 2003, at 23:52:25
I don't throw up (only once ever), noise and light bother me a little but not to the point where I HAVE to be in a dark quiet room. I don't get the double vision, or blurred vision. Mine were first labelled as the cluster headaches too. It's always in my right eye and down the right side of my nose and face..(and I had my sinuses checked..OK). That's what I mean by not typical migraine that people always think about. Well I definitely have the "sweating" side effect and it drives me crazy ( I live in Texas!)
Posted by jasperwasper on June 25, 2003, at 20:23:40
In reply to Re: topomax (for everyone chatting 6-24) » jasperwasper, posted by Sprgrvr on June 25, 2003, at 16:08:17
Hey..how do you get the message to show the >> for the person you are talking to? (duh)
Posted by Snoozy on June 26, 2003, at 1:07:20
In reply to Re: topomax (for everyone chatting 6-24) Snoozy, posted by jasperwasper on June 25, 2003, at 20:20:16
There are many variations on migraines, but there is that idea of what is a "migraine" out there. When I first started going to doctors about my headaches, I wondered if I could have migraines since I didn't have an aura before they started. I've since read that only a quarter to a third of migraine patients experience that.
I once had what was later figured out to be an abdominal migraine (the pain was in the abdomen, not the head). I went to the ER and actually came pretty close to having my appendix taken out!
I read an interesting book about the different kinds of migraine - I'll browse through "the stacks" and see if I can find it :)
Posted by Snoozy on June 26, 2003, at 1:11:23
In reply to Re: topomax (for everyone chatting 6-24), posted by jasperwasper on June 25, 2003, at 20:23:40
On the page where you compose your post, directly below the box for Subject:
is a little checkbox that says "add name of previous poster" next to it - if you check that you'll get the >> name to show up in the subject line.It took me a while to figure it out :)
> Hey..how do you get the message to show the >> for the person you are talking to? (duh)
Posted by Sprgrvr on June 26, 2003, at 11:29:16
In reply to Re: atypical migraines, posted by Snoozy on June 26, 2003, at 1:07:20
I'm not familiar with the term "triptans". I've been put on many different medications when I was 18-19 but none of them did anything. They are all in my file, I'll have to ask my doctor.
Posted by jasperwasper on June 26, 2003, at 11:52:07
In reply to Re: topomax (for everyone chatting 6-24) » jasperwasper, posted by Sprgrvr on June 25, 2003, at 16:08:17
Thanks for the info especially about the caffiene....I've being drinking caffiene too..just can't seem to live without it..and I seem to do ok with the headaches...I don't have blackouts or anything..although my headaches used to last for 2 or 3 days in the past...good luck to you!
Posted by Snoozy on June 26, 2003, at 17:05:21
In reply to Re: atypical migraines » Snoozy, posted by Sprgrvr on June 26, 2003, at 11:29:16
The "triptans" are not painkillers - they work on neurotransmitters that cause the pain. I found this site that explains some of the basics:
http://headaches.about.com/library/weekly/aa101100a.htm
There are even more triptans on the market now than are mentioned here. Imitrex was the first on the market - in 1993 or 1994. I've tried most of the others, and Imitrex seems to be the best one for me. But we're all different of course, so it's great that there are different options.
Doctors usually have samples of many of them. My neurologist gave me a bunch of them to try out.
Honestly, I don't think I would have been able to continue living with my migraines if the triptans hadn't come out. I think it's definitely worth asking about!
> I'm not familiar with the term "triptans". I've been put on many different medications when I was 18-19 but none of them did anything. They are all in my file, I'll have to ask my doctor.
Posted by LKA on June 27, 2003, at 9:22:08
In reply to Re: topomax (for everyone chatting 6-24), posted by jasperwasper on June 24, 2003, at 21:32:34
Hi there. I just found this area. I have suffered with headaches my whole life. I have bee on Topamax now for several months. I have just upped my doseage to 2 pills a day. The pins and needles are going away thank goodness. However, my hair is falling out. Anyone know anything about this?
Thanks much.
Posted by dddiane on June 28, 2003, at 6:31:48
In reply to Re: topomax (for everyone chatting 6-24), posted by LKA on June 27, 2003, at 9:22:08
LKA,
I've had some problems with hair loss due to Topamax, but it seems to be leveling off and I'm not sure why. I take quite a few suppliments specificly to counteract the hair loss, and I think this helps. There is a Topamax board if you are interested with a posting about vitamins & suppliments recommended to prevent hair loss:
http://pub123.ezboard.com/btopamaxtalk
This is a quote from that posting,
"2000 mcg of Biotin, 100 mg of Zinc, 500 mg of Magnesium, and 200 mcg of selenium. I also use the Nioxin hair products religiously."
In addition to the above I add a multi vit, a B-complex, 1mg of folic acid, vit E and primrose oil.
No one can say for sure if they work, I'll do anything to keep my hair, and I seem to be accomplishing that. :)
Diane
> Hi there. I just found this area. I have suffered with headaches my whole life. I have bee on Topamax now for several months. I have just upped my doseage to 2 pills a day. The pins and needles are going away thank goodness. However, my hair is falling out. Anyone know anything about this?
>
> Thanks much.
>
>
Posted by dixie on June 30, 2003, at 3:26:48
In reply to Re: topomax (for everyone chatting 6-24), posted by jasperwasper on June 24, 2003, at 21:32:34
I have been reading all the posts about topamax and i just started taking it two days ago...im currently on lamictal 150mg once a day in two doses...seraquel 100-400mg at nite....trazodone 100-400mg at nite...lorazepam 1mg at nite...currently im on 50mg of the topamax which i will increase up too 200mg...i was givin this RX to help in my quest to lose weight which i gained heavily after i was on effexor XR for so long...ive read it can disrupte sleep and leave you sluggish...i suffer from both insomnina and hypersomnina it just depends on weather im depressed or manic...i guess im just looking for sum thoughts on this drug combo i feel like a walking medicine cabinet as im also on allegra D for allergies and am supposed to try Restorl 30mg to help me sleep as well...sometimes i go for 3 or 4 days without sleep...then sometimes i could sleep for that long...anyway im just looking for some imput...not sure if i could deal with the side effects if i happen to experience any...some good info from previous posts tho...thanx dixie
Posted by gerberagirl on June 30, 2003, at 21:40:10
In reply to Re: new to topamax, question about dosage, posted by karmagirl on March 31, 2003, at 10:00:12
Hey Everyone - have been reading for a while and decided I needed to share some of my experiences. Topamax some days leaves me thinking, uh, what is two + two? and I sometimes have to describe something to someone else and have them supply me the word but I also remember how ELATED I was to realize that I had gone 5 days/5 pills and not one headache! I emailed everyone! :-) After 5 years of daily headaches and monthly migraines, though it is frustrating, I'll take some memory bumps.
My weirdest side effect ever and it's from Topamax: change of taste. I have to have a diet pepsi every morning and all the sudden I could not stand the taste of it! It was freaky. This lasted for about 2 weeks. (I had been told to cut back on caffeine and apartame but this is extreme! j/k) I also had the tingling sensation in my fingers which would pop up intermittenly over an 8 month time period but hasn't in the past 4 months (I have also gone up to 200mg in the same time frame). by the way, I was back to diet pepsi in no time.
Somebody else said, paraphrased, each med will not work on everyone the same way. We had a big tragedy in my family and I finally asked my Dr to put me on lithium b/c nothing else was working. It made me feel better but my hands were trembling so much it was difficult to write, type, and drink and he wouldn't let me stay on it.
good luck to all of you and thanks for sharing your words of wisdom! it was very encouraging when i was finally diagnosed last year with adhd, rapid mood cycling and depression, to find you and read your comments about meds I was taking.
Posted by dddiane on July 1, 2003, at 7:45:48
In reply to topamax, posted by dixie on June 30, 2003, at 3:26:48
Dixie,
I am current taking Topamax and have been taking it for 7 months now, Two months ago I added Lamictal, to improve my stability and give me more energy. This combination has been wonderful for me. The Topamax was an adjustment, the first two months I did have some stupids, but after that my main complaint was dry mouth, followed by a lack of motivation.But because my stability wasn't where it needed to be, my pdoc suggested we start "trading out" the Topamax for the Lamictal. So I have gone from 175mg of Topamax to 75 Topamax and 112.5mg Lamictal. I am adding the Lamictal in slowly 12.5mg a week, because of the rash issue. I am going to speak to my pdoc about keeping some Topamax in my "cocktail" because I think I would be too hyper on the Lamictal alone. I also take 600mg of Neurontin and .25 Klonopin in the pm for sleep. Nothing else.
An early side effect of Topamax (at 25 -75mg) was terrible anxiety and sleeplessness. I had to up my Klonopin. After 3 weeks an odd thing happened, the anxiety was replaced with calm, my sleep returned, and for a period of about a month I didn't need any Klonopin at all!
I like Topamax because it makes me calm, and I tend to have some stormy moods, on both ends of the scale. It just levels me out. The Lamictal has cut through the motivation problem, and seems to be keeping me out of depression.
I would say the most important thing about starting Topamax is to go extremely slow. If you give yourself time to adjust to it, the side effects will not slam you. Docs are not always wise to this.
Well, we have a board that is all about Topamax, if you are interested:
http://pub123.ezboard.com/btopamaxtalk
Hope to see you there. Best of luck with your Topamax adventure. It has been a beneficial med for me.
Diane
> I have been reading all the posts about topamax and i just started taking it two days ago...im currently on lamictal 150mg once a day in two doses...seraquel 100-400mg at nite....trazodone 100-400mg at nite...lorazepam 1mg at nite...currently im on 50mg of the topamax which i will increase up too 200mg...i was givin this RX to help in my quest to lose weight which i gained heavily after i was on effexor XR for so long...ive read it can disrupte sleep and leave you sluggish...i suffer from both insomnina and hypersomnina it just depends on weather im depressed or manic...i guess im just looking for sum thoughts on this drug combo i feel like a walking medicine cabinet as im also on allegra D for allergies and am supposed to try Restorl 30mg to help me sleep as well...sometimes i go for 3 or 4 days without sleep...then sometimes i could sleep for that long...anyway im just looking for some imput...not sure if i could deal with the side effects if i happen to experience any...some good info from previous posts tho...thanx dixie
Posted by Jane Jones on July 7, 2003, at 18:36:54
In reply to topomax, posted by Ellen Brodie on April 19, 1999, at 15:58:40
I began taking lithium briefly, then switched to topamax. I have had diarrhea for 13 months now. When I tell my psychiatrist, he laughs and says, "What, do you have malaria?" For about 3 days now I have stopped taking the topamax to see if it would stop, but it hasn't. Maybe I need more time, I don't know. Has anyone else had this problem?
Posted by jgoree on July 10, 2003, at 21:35:17
In reply to Re: topomax (for everyone chatting 6-24) Snoozy, posted by jasperwasper on June 25, 2003, at 20:20:16
my 29 yr old daughter is hospitalized. She was taken off topamax before for not eating but they put her back on it. Siezures are controlled but she is nauseous/and or throws up after eating. Is in the hosp since monday. Had a breakdown I think mostly physical but came across as mental. They are running all kinds of tests to figure out why she cant eat and why now it has started to hurt if she does. It has to be the topamax but no one will listen. she is also on Dilantin and adavan (and weighs 100lbs
Posted by Podwoman on July 11, 2003, at 0:02:35
In reply to Re: topomax (for everyone chatting 6-24) Snoozy, posted by jgoree on July 10, 2003, at 21:35:17
Sorry to hear about your daughter. I recently was taken off Topamax (monday) due to extreme allergic reaction (rash covering 1/2 my body) after bing on 600mg daily.
This is a tricky drug. I this is is being touted as the (relatively) new great thing on the market but it has some side effects that are more severe than maybe previously known to some people. Don't back down with your convictions!
Good luck with everything--My prayers are with you.
--Podwoman
Posted by karmagirl on July 15, 2003, at 10:53:57
In reply to Re: topomax (for everyone chatting 6-24) Snoozy » jgoree, posted by Podwoman on July 11, 2003, at 0:02:35
Hi Podwoman! 600 MG?? Wow, how did you get to such a high dosage and did it serve it's purpose? As you know, (Podwoman) I've been on Topomax about 14 months and haven't experienced any of these problems, but I'm also still at 200 MG for papilledema. Is it at the higher dosages that people are experiencing these problems or does that matter? Jgoree, I too am praying for your daughter.
karmagirl
Posted by Podwoman on July 15, 2003, at 12:31:03
In reply to Re: topomax (for everyone chatting 6-24) Snoozy, posted by karmagirl on July 15, 2003, at 10:53:57
Hi Karma! Where ya been?? Email me!
Well, I've lost ~28 lbs since february...So, not as great as I would have liked to see results. But, gettin' there! You?
--->Podwoman
> Hi Podwoman! 600 MG?? Wow, how did you get to such a high dosage and did it serve it's purpose? As you know, (Podwoman) I've been on Topomax about 14 months and haven't experienced any of these problems, but I'm also still at 200 MG for papilledema. Is it at the higher dosages that people are experiencing these problems or does that matter? Jgoree, I too am praying for your daughter.
>
> karmagirl
Posted by Nissy on July 15, 2003, at 12:56:47
In reply to Re: topomax (for everyone chatting 6-24) Snoozy, posted by Podwoman on July 15, 2003, at 12:31:03
>
> Well, I've lost ~28 lbs since february
**************
Does anyone know why there is weight loss with Topamax? Is it because you just desire to eat less? No appitite? My P Doc said if I still continue to binge eat with a higher dose of Effexor he will try topamax with it. But quit honestly I'm a bit afraid to go on it after reading some of the stuff here. See sometimes reading things here can be a bad thing :( But I certainly like the idea of losing weight !!
Nissy
Posted by Podwoman on July 15, 2003, at 20:47:39
In reply to Re: topomax (for everyone chatting 6-24) Snoozy, posted by Nissy on July 15, 2003, at 12:56:47
Weight loss happens on Topamax because of several things it does: it makes certain foods (high fat foods)taste disgusting, it makes you thirsty as hell, it kills your appetite...Basically you7 eat less and end up staying away from greasy/fattening stuff and you drink a lot of water. All good things and all hard for some people, especially binge eaters.
--->Podwoman
Posted by LKA on July 15, 2003, at 21:04:50
In reply to Re: topomax (for everyone chatting 6-24) Snoozy, posted by Podwoman on July 15, 2003, at 20:47:39
Why do we have the hair loss. I cut my dose because I was losing hair and it worried me so.
Posted by Podwoman on July 15, 2003, at 21:12:37
In reply to Re: topomax (for everyone chatting 6-24) Snoozy, posted by LKA on July 15, 2003, at 21:04:50
Hair loss is one side effect I was lucky enough to not get. Probably the ONLY side effect I didn't get! LOL So sorry, can't speak to that.
---->Podwoman
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