![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 76 to 100 of 1085. Go back in thread:
Posted by Lexie on March 25, 2001, at 8:27:21
In reply to Re: Topamax Experiences: Long Term Use, posted by Bob on March 24, 2001, at 22:57:44
> > > > > How much B-Vitamin Complex did you take to reduce the tingling and confusion problems?
> > > >
> > > > I am taking Twinlab's "Stress B-Complex Caps." The bottle recommends to take 2 of them, but I only take one. Just divide these numbers in half (got it from their website):
> > > >
> > > > "Two hard gelatin capsules supply:
> > > > Vitamin C 1000 mg
> > > > Vitamin B-1 (thiamine) 50 mg
> > > > Vitamin B-2 (riboflavin) 50 mg
> > > > Vitamin B-6 (pyridoxine) 50 mg
> > > > Niacinamide 100 mg
> > > > Pantothenic Acid (d-calcium
> > > > pantothenate) 250 mg
> > > > Vitamin B-12 (cobalamin concentrate) 250 mcg
> > > > Biotin 100 mcg
> > > > PABA (para-aminobenzoic acid) 50 mg
> > > > Folic Acid 400 mcg
> > > > Choline Bitartrate 100 mg
> > > > Inositol 100 mg"
> > > >
> > > > The way I was lead to believe, the B's kind of work in conjunction with each other. You can likely find another brand with similar stuff. An excellent site on vitamin info is http://healthwell.com/
> > > >
> > > > Regards.
> > >
> > > Hi ya'll
> > > Long time no post. We seem to have drifted from Topamax to Lamictal, so I'll drift us back! Since I last postedI have been titrated
> > > up to 450 mgm of Topamax and all of the aformentioned side effects have disappeared. No mouth problems, no kidney stones, ( I have
> > > been drinking about two quarts of water a day all along) and my mood is quite even. I am not sure what the answer is here -- I'm
> > > sorry that you all have had difficulty, but for me the higher dose seems to have worked. Maribeth
> >
> > >I too am still taking Topamax and along with depakote, I no longer have the sores in my mouth.. but I drink alot of water too....
>
> **********
>
> It is excellent to hear that the higher doses of topomax are producing good results for some people. I am hanging in there with 225mg at the moment - I just upped the dose last week so am still experiencing side effects. I am still on the fence as to whether I will stick with it. There seems to be a contingent of people who have defected over to Lamictal, but I am not ready to give up on Topomax quite yet. It has given me my lighter weight body back. I am disheartened by the cognitive problems and lack of antidepressant effects though.
>
> Bob>HI Bob
You sound like I did. The Topamax did nothing for an AD it helped me to lose the weight I had gained on the other meds. That is why my Pdoc added the Lamictal for it's AD quality. Did you consider both? I have done well with both of these drugs combined. As you will see by my post later on this page he is considering changing my meds to Geodon and Topamax then Geodon alone. I am not sure why. It could be that after one year I am continueing to lose weight and under my weight for my height. I hope you have been well. I have been going through a tough personal time. It is nice to come back and visit my friends here. Glad to see you and phillybob keeping the worlds longest post going. I HOPE you missed me. Smiles, Lexie
Posted by phillybob on March 25, 2001, at 17:20:23
In reply to Re: Topamax Experiences: Long Term Use, posted by Lexie on March 25, 2001, at 8:27:21
Hi, Lexie (a.k.a. Lamictal/Topamax Poster Child)!
It's good to hear back from you. I thought I read and feared that you took yourself off of all meds! Tsk, tsk for thinkin' of it (if that was you talkin' such nonsense). I know when I find something that works, I'm going to stay on it for at least 9 months before evaluating it, and even then, will likely just stay on it.
As you suggested for Bob, I might re-add a small dose of Topamax to my Lamictal mix at some point if I need to. But, for now, just monotherapy with the Lamictal. I can stand just tryin' one, so I will. I like the idea of keeping with the one drug until I get up to therapeutic doses, so I can evaluate it without clouding it with other drugs' effects. I am my own science lab. :) (aren't we all?)
Bob, I don't think the Topamax is supposed to have any AD effects. For me, though, when I was taking it, having energy back was enough to feel great again. I was probably generating my own AD effects at that point.
Cognitive difficulties were not an issue for me after a while (same thing for Jeapordy queen, Maribeth, I believe). Have you tried a Stress B Complex tab yet?
Keep 'em coming, we may not be the longest thread yet, but I have faith we can get there, if we all work together on this, mates! :)~
Posted by grapebubblegum on March 25, 2001, at 20:54:39
In reply to Re: Topamax Experiences: Long Term Use, posted by phillybob on March 25, 2001, at 17:20:23
I guess this thread should have its own website, it is so long. Forgive me for not reading every post, but I was fascinated by the quote you posted, Phillybob (hey, I have a brother Bob in Philly but I don't think you are him) about differentiating between bipolar and plain old depression. To make it short (and to recap what I wrote in another thread):
My dad was a card-carrying bipolar for many years, hospitalized several times and treated last I heard with Tegretol among other meds. My mom has some sort of personality disorder involving controlling others and has had alcoholism problems. Now, I myself have been diagnosed with depression with or without panic disorder over the last 15 years (I'm 35, but the panic attacks started around age 10 or 12.) I have never felt "depressed" but I can see that a lot of symptoms of depression are there when I am not treated with SSRI's and the klonopin that I take as needed (rarely) for panic attacks. My son, though, who is only 5 has been recently diagnosed with bipolar disorder. His pdoc admits that he went in large part on family history in making that diagnosis. Zyprexa was started and it made great improvements in my son but the weight he put on in one month was alarming. He was switched to topomax and has done PHENOMENALLY well, like he is a new person and I couldn't be happier about that. My question: Although I fail out on the traditional "mania" tests, should I re-consider my usual ill-fitting "depression" diagnosis and see if maybe topomax might work for me? My very sharp pdoc suggested trying whatever works well on my son. We ruled out the zyprexa early because of the weight-gain effect. I am having trouble understanding the difference between depression and bipolar disorder. I understand the manic component should be there in bipolar... but is that a hard and fast rule? Does the depression in bipolar people differ from the "typical" depression symptoms? Mine has always been atypical anyway, e.g. oversleeping rather than insomnia.
Posted by phillybob on March 26, 2001, at 6:42:49
In reply to Re: Topamax Experiences: Long Term Use, posted by grapebubblegum on March 25, 2001, at 20:54:39
The best answer to your question, brother ... er ... I mean ... Grape Ape :) ... is to read many, many posts here and you will learn a lot about the various manifestations of the various illnesses variously sickening us.
That, I'm sure you're doing, but you may have missed this following post within this very same thread: http://www.dr-bob.org/babble/20001231/msgs/51384.html
The article linked and cut and pasted within is one of the favorites that I've come across. It puts the mania on hold as a diagnosis tool, in favor of a lessor sub-hypomanic criteria. It's interesting and makes a lot of sense to me.
How much Topamax is your son taking and how long has he been on it? It's great to hear of someone being treated so successfully at such an early age, before the illness wreaks havoc on one's life. Best wishes.
P.S. Doesn't sound like we are literally brothers to me, too.
Posted by grapebubblegum on March 26, 2001, at 15:37:04
In reply to Re: Topamax Experiences: Long Term Use, posted by phillybob on March 26, 2001, at 6:42:49
Thanks, PhillyBob. That cut-n-paste is exactly what piqued my interest. I bookmarked Dr. Hume's "How the World Works" reading list because it looks like interesting material and I'm also going to search for Dr. Ivan Goldberg's page. (Hey, does it qualify as sub-manic behavior to collect and hoard and relentlessly seek out new sources of reading material that I never get around to reading because I am too busy making sure I have found ALL the books I want to read but can't possibly read in a lifetime? j/k *I think*)
I don't think you are my brother but I KNOW I am DEFINITELY not your brother because females rarely achieve that status even in this day and age of equal opportunity. ;o)
Posted by grapebubblegum on March 26, 2001, at 15:46:25
In reply to Re: Topamax Experiences: Long Term Use, posted by grapebubblegum on March 26, 2001, at 15:37:04
Oops, I forgot to answer the question. My son is on 25 mg. every morning with instructions to add another 25 mg. in the afternoon if needed, but I haven't noticed the need yet. He has only been taking topomax for about two weeks but the improvement has been dramatic. I posted about in on the kidzpsychobabble board, and here's the link to that post: http://www.dr-bob.org/babble/child/20000813/msgs/135.html
Posted by phillybob on March 26, 2001, at 16:00:13
In reply to Re: Topamax Experiences: Long Term Use, posted by grapebubblegum on March 26, 2001, at 15:37:04
> (Hey, does it qualify as sub-manic behavior to collect and hoard and relentlessly seek out new sources of reading material that I never get around to reading because I am too busy making sure I have found ALL the books I want to read but can't possibly read in a lifetime? j/k *I think*)
Yep. :)
[at least I do it, but seriously don't think it's anything more than a little OCD type behavior in a personality sense of the diagnosis, not problematic unless it gets in the way of any other productivity ... mine is problematic, I do believe, but not worthy of any cure more than perhaps a time management course (know any good ones?) ... my "Favorites" list is, oh let's just say, fairly long ... but I know everything that's there!] :)
Okay, sis, I'm done.
Posted by janedoe on March 30, 2001, at 16:32:41
In reply to Re: Topamax Experiences: Long Term Use, posted by grapebubblegum on March 25, 2001, at 20:54:39
Hi folks, I'm so glad I found this site. I just started taking topamax this week, dose 25mg. to start. Before I started reading your posts I assumed they would just be more negativity. What a pleasant surprise. Topamax sounded like a good med for my symtoms but those are some scary side effects. Anyway, I just wanted to say thanks to many of you for allaying some of my fears and sharing some of your life.
Posted by JOEI on March 30, 2001, at 17:29:03
In reply to Re: Topamax Experiences: Long Term Use, posted by janedoe on March 30, 2001, at 16:32:41
> Hi folks, I'm so glad I found this site. I just started taking topamax this week, dose 25mg. to start. Before I started reading your posts I assumed they would just be more negativity. What a pleasant surprise. Topamax sounded like a good med for my symtoms but those are some scary side effects. Anyway, I just wanted to say thanks to many of you for allaying some of my fears and sharing some of your life.
started taking topimax 50mg per day with lamictal
and clonazepam works great.
Posted by lois on April 1, 2001, at 9:29:38
In reply to Re: Topamax Experiences: Long Term Use, posted by JOEI on March 30, 2001, at 17:29:03
> started taking topimax 50mg per day with lamictal and clonazepam works great.JOEI,
I've worked my way up to 75 mg topamax at night, over the past month and 400mgs lamictal( I have been on for months) during the day.Also on clonapin and ad's.Sleep is OK,but am lethargic during the day.Could it be the lamictal dose or the ad's I hope to cut back on soon? I really want to stay on the T and L combo if I can adjust things.I've been on most all the other mood stablizers. Thx.
Lois
Posted by Bob on April 1, 2001, at 22:00:41
In reply to Re: Topamax Experiences: Long Term Use » JOEI, posted by lois on April 1, 2001, at 9:29:38
>
> > started taking topimax 50mg per day with lamictal and clonazepam works great.
>
> JOEI,
>
> I've worked my way up to 75 mg topamax at night, over the past month and 400mgs lamictal( I have been on for months) during the day.Also on clonapin and ad's.Sleep is OK,but am lethargic during the day.Could it be the lamictal dose or the ad's I hope to cut back on soon? I really want to stay on the T and L combo if I can adjust things.I've been on most all the other mood stablizers. Thx.
> Lois> > > > > > > > > > > >
May I ask why your doc decided to add Topomax at this point after you've been taking 400mg of Lamictal for awhile?
Just curious.
Bob
Posted by phillybob on April 1, 2001, at 22:55:14
In reply to Re: Topamax Experiences: Long Term Use, posted by Bob on April 1, 2001, at 22:00:41
> May I ask why your doc decided to add Topomax at this point after you've been taking 400mg of Lamictal for awhile?
>
> Just curious.
Make that 2 Bobs who are curious. What kind of effects did that dosage of Lamictal seem to have for you?
Posted by Dawn Setzer on April 12, 2001, at 13:13:38
In reply to Re: Topamax Experiences?, posted by Lexie on January 23, 2001, at 5:00:53
> > > >
> >
> > Lexie:
> >
> > Just a couple of quick questions... I am a relative newcomer to this thread.
> >
> > How long did it take you to build up to, and then stabilize on those high doses of lamictal and topomax; in other words, to get where you are now?
> >
> > Is that all you are taking is those two meds, or are you supplementing with others? Are you getting good AD effects from them?
> >
> > Bob
>
> I took just Topamax from June to September and got relief at about the 250 level and the optimum relief at 400. Topamax helped me mostly with the anger and acting out highs. I was experiencing a lot of suicidal thoughts and severe depression when my doctor added the Lamictal. It was added in a starter pack slowly because you can get a sometimes very serious rash if started to quickly. The manufacture makes a started pack that your doctor will give you at no charge (mine did). That takes 5 weeks at the end of 5 weeks you are up to 150 it still goes slowly from there it was the beginning of November and tons of support from Noa that kept going without giving up to make it to the 500 level, my doctor says that for my condition Topamax max's out at 400 and Lamictal max's out at 600, I plan to stay where I am with the Lamictal. I take no other AD's the Lamictal is more than I could have ever hoped for. I am sure the results are not for everyone, but it worked for me. My doctor has been known as one of the best in my area for Medication issue's. I am VERY lucky. I am also very lucky to insurance, without it these meds would cost 600.00 per month. Good Luck, LexieThis is the first time I've participated in one of these threads and will apologize in advance if I've jumped in at the wrong place. I'm starting my first dose of topamax tonight and a bit nervous about it. I have a diagnosis of ADD, but my experience and symptoms are classically bipolar. My pdoc is WONDERFUL and has pointed out that the two are closely related along with PMS, migraines, etc., all of which I experience.
I have been on every antidepressant in the book and none have worked for me. SSRI's make me anxious and angry after the first few weeks, lamictal had no effect whatsoever. In fact, I generally have responses or side effects that are the exact opposite of indications.
I currently take dexedrine, 20 mg in the morning and 15 in the afternoon. Helps with my functioning but I feel anxious and manic. I'm unwilling to give it up because it at least allows me to function somewhat. I've had problems with insomnia for a couple of years and now it's reached critical mass. Up for three days at a time with no sleep in sight. Neurontin was great for anxiety, but I experienced binging (history of eating disorders), sexual side effects (not for the better!) and fluid retention. Next was trazadone which caused an almost immediate 5 lb weight gain and bloating in spite of increased urinary frequency. I am gettin a few hours of sleep here and there, but never before 4:00 or 5:00 in the morning.
I'm at the point of wondering how I will ever be able to function normally or even minimally enough to get up and go to work every day. Unfortunately, I'm not independently wealthy, so this is simply not acceptable! This of course, increases my anxiety, guilt, etc.
I start on my first, very low dose (12.5 mg) of Topamax tonight. I've done a lot of research and have some concerns about this drug. These threads have been a sourse of comfort and information and I thank you all for sharing your experiences and insight. Has anyone out there been helped with extreme insomnia by Topamax? How about sexual side effects in woman and fluid
retention? Must admit it would not be a bad thing for me if I lost my taste for carbonated and caffeinated beverages. A bit addicted, must admit and along with the dexedrine leaves me quite agitated most of the time. I know, I know, it also contributes to the insomnia, but early on the dexedrine actually helped me to sleep!I'm not usually afraid to try new drugs, as I often don't experience the indicated side effects. I guess I'm just hoping this will work and feeling a bit hopeless and like I've run out of options. I'd sooner take nothing at all than deal with the even worse side effects of lithium, etc. Benzodiazapines aren't an option due to a history of alchohol abuse and the likelyhood that my insomnia will be a long term struggle. Ah, but I do babble on......
Thanks in advance for sharing your wisdom and experiences with this drug!
Peawee
Posted by phillybob on April 12, 2001, at 14:30:58
In reply to Re: About to start on Topomax, posted by Dawn Setzer on April 12, 2001, at 13:13:38
Hi, Dawn! Sounds like this could really work for you if my dx and success on this med, albeit brief, was any indication. I'm in the process of titrating up on Lamictal right now (currently, at 100mg/day along with a trial of Adderall). Topamax was really great for me, though, and I will certainly re-consider it, though, at a lower dosage, if need be.
My only advice to you would be, say once you reach 100 mg/day or so, is to hang out at that dosage for a while to see if it is enough before titrating up. But others have not necessarily had the side effect that I had (though it is a side effect, the gum recession, per my pdoc).
As far as sleep, for me, in the beginning, it would let me (and cause me) to sleep a bit, but then eventually, at the higher doses, I was takin' it in the day (split doses, I think) without sleepiness and no problem sleeping at night. (that's only a problem for me now with the Adderall, but I'm still tinkering).
What dose of Lamictal had you gone up to? I fear I will have the same non-response as you or a partial response which, if I can get the Adderall runnin' properly, will allow me to decide to stay pat or not.
Good luck! Keep us posted. This is as fine of a place to post your experiences for this drug as any!
Posted by Lainie on April 12, 2001, at 21:30:57
In reply to Re: About to start on Topomax » Dawn Setzer, posted by phillybob on April 12, 2001, at 14:30:58
>I'm totally new to this thread and appear to have a pretty different situation from everyone who's posted since 1/4/01, which is as far back as I find available for viewing, anyway. You all appear to be taking Topamax for depression and/or bipolar and/or mood disorders (and now Dawn has added ADD to the list).
My lifelong problem is migraines, now diagnosed as rebound headaches caused by the narcotics and ergotamine suppositories my (former) neurologists have supplied me with daily for many years. I'm now (for the past three weeks) seeing an internist and clinical psych at a headache clinic here in N. CA who have had me withdraw from all rebound-causing pain meds, even OTC, and I've been off them for 7 days now, but am still "allowed" to take my Imitrex tabs up to 3 times a week (soon to be down to 2) twice a day. Don't know if you can imagine how bad the other four days of the week are.
I started on Topamax 3 wks. ago and am now up to 25 mg. AM and 50 mg. PM, have had terrible insomnia so have upped my dose of Serzone (antidepressant) from 100 mg. PM to 150 mg. PM. I also take 15 mg. Paxil (10 AM, 5 PM), 10 mg. Klonapin (5 AM, 5 PM), and 20 mg. Propranolol PM.
For the insomnia I'm taking 2 Restoril at 9 PM and 1 Sonata when I invariable wake up again at 2 or 3 or 4 AM because everything I read says I HAVE to get sleep.
Does anyone know anyone else using Topamax to prevent migraines? I know from this thread that we're supposed to get up to at least 200 mg. for it to really take effect, but if this insomnia doesn't get better I might not be able to make it that far.
I wear an ice pack as a lovely head decoration most days, take bubble baths with candles 2-3 times a day, do my relaxation in bed 2-3 times a day, and try not to do anything too taxing - all this is possible because I quit my hugely stressful job the end of September; I had to do something about the daily migraines or lose my mind or my life.
Thanks for letting me get all this off my chest. I've enjoyed reading all your experiences - you are a refreshingly literate group and you all hang in there through thick and thin - as must we all!
Posted by Cateb on April 14, 2001, at 19:21:37
In reply to Re: Recently Started on Topamax, posted by Lainie on April 12, 2001, at 21:30:57
Lainie, I too have suffered from devastating migraines as my primary complaint since I was 19. And until 1996 I had never had a problem with depression. I am currently on Topamax after Pamelor and later Depakote both caused too many side effects (though all three had an effect on them). I also use a LOT of Imitrex injections and nasal sprays.
After having my first child in 1996, I also developed a severe depression problem, and after my second child in 1998, it blossomed into bipolar II with rapid cycling. So I was treated with meds that could also tackle migraines. Thus I'm now on Zoloft, Wellbutrin and Topamax. For me the Topamax only began to help the migraines at 400 mg, and it never has helped the mood swings in my opinion. I've been on it at that dose for 3 months. I've lost 30 pounds in three months, had constant diarrhea, and had a constant "white noise" type of scream inside my head...I don't sleep well at all. I feel constantly agitated. Joyless about life, food, art, my family, everything. I finally dropped back to 300 mg on my own and am about to drop to 200 tonight. I have just taken things into my own hands; I felt my life was in danger I was so close to the edge. Ironically, the agitation caused me to take my migraine narcotics (which I needed less for the migraines at the 400mg dose) to dull that awful Topamax feeling. They were the only things in my chemical war chest that actually helped...
Having said this, for others on this thread, they have found Topamax excellent, and if I didn't get the agitation, I could have appreciated the headache reduction. You clearly have a very different background and may find relief.
I would also like to point out that I got good results from Depakote, though I had some problems there with weight gain, lethargy and hair loss at 500mg. And lastly, Pamelor, an old tricyclic, worked very well with side effects of constipation and dry mouth, but the bigger problem for me there was that if I missed a dose or dropped even 5 mg I would get massive withdrawal headaches immediately and my husband would need to miss work I would be so sick. Perhaps I'm just too sensitive to drugs...
I wish you luck and if you want to talk more, I check this board weekly to get hope and inspiration from the others here, and to learn more. If you know of a good migraine support group on the web, let me know.
Posted by kp2001 on April 15, 2001, at 13:06:06
In reply to Re: Topomax question, posted by Lexie on January 23, 2001, at 5:08:42
hi
ive just started topomax but
i was expecting something totally different
on a topomax forum i thought topomax was for adhd
i have adhd which is short for attention difficency and hyperactivity disorder
and im taking topomaxim getting headaches the cloudiness u people were talking about in the forum and exrteeeme laziness
what do u guys think
Posted by phillybob on April 16, 2001, at 13:12:30
In reply to Re: Topomax question, posted by kp2001 on April 15, 2001, at 13:06:06
> i thought topomax was for adhd
It seemed to have good effects for my add-type symptoms, and I have heard of it being effective for ADD, so who knows? Could work.
I assume you've already tried the other more first-line ADHD drugs such as Ritalin, Adderall and Dexadrine, but did not have success with them. (I think they are much "gentler" drugs to be using than Topamax.)
> im getting headaches the cloudiness u people were talking about in the forum and exrteeeme laziness
>
> what do u guys thinkSince you just started this medication, those symptoms were similar to the ones I was having in the beginning of the early dose increases.
Good luck and keep us updated!
Posted by kp2001 on April 16, 2001, at 15:02:42
In reply to Re: Topomax question » kp2001, posted by phillybob on April 16, 2001, at 13:12:30
ive heard about all these other drugs such as
ritalin
but my physchiatrist recomended topomax
its helping in some areas but its really messing
me up in other areas i dont know what to do
im so lost
Posted by phillybob on April 16, 2001, at 17:54:42
In reply to Re: Topomax question, posted by kp2001 on April 16, 2001, at 15:02:42
> ive heard about all these other drugs such as
> ritalin
> but my physchiatrist recomended topomaxYou should ask your psychiatrist why he or she is having you try Topamax before trying Ritalin, Adderall and Dexadrine. These drugs are approved for ADHD. Topamax is not.
There must be a good reason. Topamax is only approved as an anti-siezure medication (at least, in the U.S.).
> its helping in some areas but its really messing
> me up in other areas i dont know what to do
> im so lostChances are, once you stabilize at a certain dose level for a few days, some of the negative effects should stop. But, you might get them again each time you increase the dose.
Good luck.
Posted by Lainie on April 16, 2001, at 21:24:06
In reply to Re: Recently Started on Topamax » Lainie, posted by Cateb on April 14, 2001, at 19:21:37
> Lainie, I too have suffered from devastating migraines as my primary complaint since I was 19. And until 1996 I had never had a problem with depression. I am currently on Topamax after Pamelor and later Depakote both caused too many side effects (though all three had an effect on them). I also use a LOT of Imitrex injections and nasal sprays.
>
> After having my first child in 1996, I also developed a severe depression problem, and after my second child in 1998, it blossomed into bipolar II with rapid cycling. So I was treated with meds that could also tackle migraines. Thus I'm now on Zoloft, Wellbutrin and Topamax. For me the Topamax only began to help the migraines at 400 mg, and it never has helped the mood swings in my opinion. I've been on it at that dose for 3 months. I've lost 30 pounds in three months, had constant diarrhea, and had a constant "white noise" type of scream inside my head...I don't sleep well at all. I feel constantly agitated. Joyless about life, food, art, my family, everything. I finally dropped back to 300 mg on my own and am about to drop to 200 tonight. I have just taken things into my own hands; I felt my life was in danger I was so close to the edge. Ironically, the agitation caused me to take my migraine narcotics (which I needed less for the migraines at the 400mg dose) to dull that awful Topamax feeling. They were the only things in my chemical war chest that actually helped...
>
> Having said this, for others on this thread, they have found Topamax excellent, and if I didn't get the agitation, I could have appreciated the headache reduction. You clearly have a very different background and may find relief.
>
> I would also like to point out that I got good results from Depakote, though I had some problems there with weight gain, lethargy and hair loss at 500mg. And lastly, Pamelor, an old tricyclic, worked very well with side effects of constipation and dry mouth, but the bigger problem for me there was that if I missed a dose or dropped even 5 mg I would get massive withdrawal headaches immediately and my husband would need to miss work I would be so sick. Perhaps I'm just too sensitive to drugs...
>
> I wish you luck and if you want to talk more, I check this board weekly to get hope and inspiration from the others here, and to learn more. If you know of a good migraine support group on the web, let me know.Cateb, thanks so much for responding. It's great to hear from another migraineur, although your medical problems and drug combinations sound a lot more complicated than mine and I wish you a lot of luck. Terrible side effects at 400 mg. of Topamax and I'm having trouble at 75! (I go to 100 tomorrow morning.) I too tried Depakote, Zoloft and Wellbutrin, and also one or two of the tricyclic drugs. All of the Depakote-like drugs and high doses of Inderal/Propranolol made me so tired I couldn't even walk, much less run three times a week, so I quickly gave them up because to me life isn't worth living if I can't exercise (which I can't until I get over this rebound drug withdrawal thing).
How much Imitrex are you taking? I had to give up the injections because I just hated the idea of giving them to myself and was so thankful when they came out with the tablets. My MD says no more than two to three times/wk., but I think after 5/1 he's probably going to say 2/wk. max - maybe it has to do with the rebound effect but that's something else I need to ask him.
What are you going to replace the Topamax with? I've read about so many other similar drugs on this thread that I know they're out there - have you talked to your doctor yet?
Anyway, I'll have time to write more later, but wanted to tell you that although I don't know of a good migraine support group yet, there is the ACHE net which has tons of separate threads (I wish they would merge more of them) about migraines that you might want to check out. If you're not familiar with ACHE it's the American Council for Headache Education at www.achenet.org/; select Discussion Forums, where they have Expert Talk, which I haven't found too useful but you can look it over, and Headache Talk, where us common folk leave our messages.
Also if it's not too late where you live I wanted you to know that there's supposed to be a program called Headache: The Painful Truth on the Discovery Channel tonight, Tuesday, April 16th at 8 and 11 p.m. ET and then again on Monday, June 4th at 9 p.m. and 12 a.m. ET. It's not available on video. Hope you get a chance to check it out.
Again, hang in there and keep me posted about any changes.I'm so excited the clinic head/internist is finally due back Wed. after being at a conference for 10 days and I have survived without him so that's a good sign - but I have a long list of questions about Topamax and its side effects and other things!
Take care,
Lainie
Posted by kp2001 on April 18, 2001, at 9:09:10
In reply to Re: Topomax question » kp2001, posted by phillybob on April 16, 2001, at 17:54:42
thanks man
uve been a great help
Posted by dawn setzer on April 20, 2001, at 11:37:45
In reply to Re: About to start on Topomax » Dawn Setzer, posted by phillybob on April 12, 2001, at 14:30:58
> Hi, Dawn! Sounds like this could really work for you if my dx and success on this med, albeit brief, was any indication. I'm in the process of titrating up on Lamictal right now (currently, at 100mg/day along with a trial of Adderall). Topamax was really great for me, though, and I will certainly re-consider it, though, at a lower dosage, if need be.
>
> My only advice to you would be, say once you reach 100 mg/day or so, is to hang out at that dosage for a while to see if it is enough before titrating up. But others have not necessarily had the side effect that I had (though it is a side effect, the gum recession, per my pdoc).
>
> As far as sleep, for me, in the beginning, it would let me (and cause me) to sleep a bit, but then eventually, at the higher doses, I was takin' it in the day (split doses, I think) without sleepiness and no problem sleeping at night. (that's only a problem for me now with the Adderall, but I'm still tinkering).
>
> What dose of Lamictal had you gone up to? I fear I will have the same non-response as you or a partial response which, if I can get the Adderall runnin' properly, will allow me to decide to stay pat or not.
>
> Good luck! Keep us posted. This is as fine of a place to post your experiences for this drug as any!Hi Gang!
Thanks for your responses! Thought I'd give it a week or so before reporting in so I could give a better overview of my experience thus far.
Well, in typical fashion for me, I'm not having the usual response to this medication. It is better than what I was experiencing with the trazadone and higher doses of neurontin, but still not perfect by any means. I'm trying very hard to be patient even as I become very tired of BEING a patient!
The trazadone, interestingly enough, reached a point of having some of the side effects that topamax is reported to have. Most disturbingly difficulty forming sentences and confusion. It was also having little effect on my insomnia although was helpful for anxiety.
The first night I took the topamax (only 12.5 mg), it cut immediately through the trazadone haze, put me to sleep and I woke up the next morning at 8:00 feeling rested and with no hangover effect. WOW!! As with the neurontin and trazadone, I continue to have a very full, bloated feeling, which is very uncomfortable. With the topamax it is primarily in my midsection as opposed to an all over fluid retention with the others. The jury is still out on this side effect as I'm premenstrual and I think the multiple med changes are contributing to the severity of those symptoms, so I'm hesitant to blame it entirely on the topamax. Constipation is also a problem which adds to the discomfort.
Among my biggest fears was the confusion etc., which has not been a problem at all. I increased the dose last night to 25 mg and still no problem. Complete clarity so far, although I think I will likely have to increase my dose of dex as I ramp up the dose of topamax.
Taste disturbance and dry mouth is barely noticeable. In fact so much so that if I didn't know it was a side effect I wouldn't even be concious of it. This may have to do with my history with dex and trycyclics which leave a terrible taste in your mouth and cause very dry mouth as well. Perhaps I'm just used to it? My caffeine consumption is down (more because I don't feel groggy all the time) and I'm smoking less. Good things!! No noticeable decrease in appetite, just my luck, but no weight gain either!
The one thing the topamax has not helped with is my level of motivation and the anxiety. I'm not groggy, but can't seem to get anything done. I did add 100 mg of neurontin twice a day for the anxiety but just adds to the food cravings and lack of energy. Also, the first few days on the topamax blew the lid right off my anger control and I raged at the drop of a hat. That seems to be under control now. I'm also aware that some of what I'm reporting as "side effects" are likely to be related to my current personal circumstances. I'm sure that can be said for all of us!
Oh and one more thing, bleeding gums. Phillybob, your extreme experience in that department was very disturbing and so I've been paying close attention in that area. Noticed my teeth are sensitive (although I typically have dental problems when under a lot of stress)and my gums bleed somewhat with flossing. Really appreciate that you've hung in on this thread even though you've stopped taking the topamax for now.
As for your lamictal trial, I'm probably not a good person to base things on. I was drinking quite a lot at the time I was on that particular drug so giving you a clear picture of my experience would be difficult. I have given a couple of the drugs I've tried in the past another shot in my sobriety, with much the same effect, but not the lamictal. I stopped taking it mostly because it was expensive and at the time my insurance company didn't cover much of the cost. It didn't seem to make enough of a difference to justify the expense. I believe I was taking 100 -150 mg twice a day. As I recall, some ongoing flulike symptoms and minor itching, but no other problems with it. It was my understanding that extreme and possibly deadly rash was the worst of the side effects. Death by rash, hmmm!
How are you finding the adderall? I found it to be less effective that the dex and not as easy to control the dosage. It is smoother in it's action but I was less clear on it.
Thanks again for hearing my out on all of this! So helpful to have an outlet for the frustration of it all and to feel like maybe my experience can help others as well! I'll keep you posted!
Dawn
Posted by dawn setzer on April 20, 2001, at 12:14:08
In reply to Re: Recently Started on Topamax, posted by Lainie on April 12, 2001, at 21:30:57
Hi Lainie!
Just wanted to say GOOD FOR YOU, for taking care of yourself in spite of it all!! Warm baths, quitting a stressful job, you deserve a round of applause!
For me at least, taking care of myself is the hardest thing to do when the rest is falling apart. I admire your commitment to being good to yourself in the face of adversity.
From the information my pdoc has given me, migraines, adhd, bipolar, seizures, pmdd, are all closely connected. I experienced severe migraines as a child and into my early 30s, although I haven't had one of any great significance in years. PHEW! I can still vividly recall the pain, however.
The research I did while taking neurontin indicated it was often prescribed for pain and migraines. I found it to be VERY helpful for anxiety, which in the past was a major factor in the onset of migraines for me, so perhaps you could check in with your pdoc about it.
I think the worst of all of this is the hamster wheel we're all running around in!! At least it feels like that for me. Anxiety produces insomnia, which in turn produces anxiety, which in your case is helping to produce headaches, etc., etc., etc.
One thing I DO know is that exercise (at least for me) makes all the difference in the world! Problem is, that gets lost in the emotional hamster wheel too!
Most importantly, don't lose that wonderful sense of humor!! I bet you look simply STUNNING with that ice bag on your head and that you wear it with style and grace. Perhaps you could create a line of flashy turban head wraps that hold a gel that can be frozen, for others who suffer as you do. A multi purpose item that can also keep you cool at the beach or be put in the cooler to chill the beer!
Wishing you the best and some relief from your pain!
Dawn
Posted by phillybob on April 20, 2001, at 12:57:28
In reply to Re: About to start on Topomax, posted by dawn setzer on April 20, 2001, at 11:37:45
> Death by rash, hmmm!
Funny. Ha, ha. No, I mean it. :)
> How are you finding the adderall? I found it to be less effective than the dex and not as easy to control the dosage. It is smoother in it's action but I was less clear on it.
I've already given up on the Adderall ... caused me to be too ? I don't know, anxious ? Made me more depressed or maybe it just allowed me to concentrate more clearly on my depression :). I'll think about dexadrine a bit later if need be.
I have however added Prozac (20 mg) to the Lamictal (up to 150 mg for the first time last nite) and woke up feelin' decent this morning ... with a bit of wearing off as this day progresses. I'm hesitant to take the meds in the day because then I am more aware of the side effects. Once I get consistent at a certain dosage, I'll play with daytime dosing. And, no, these 2 meds don't keep me up at all.
I wish you well on your Topamax trial and look forward to hearing more updates as you feel they might be relevant (as I may be re-visiting Topamax myself at some point ... who knows).
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