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Dr. Bob is Robert Hsiung, MD,
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Posted by Snoozy on June 23, 2003, at 23:14:49
In reply to Topmax for Migraines, posted by Sprgrvr on June 23, 2003, at 17:02:37
Hello and welcome. I've had migraines for about 15 years and I've found it very interesting to compare notes here. Very briefly, I have tried many migraine prophylactic drugs with little success (beta blockers, calcium blockers, Depakote, lots of antidepressants). I do get quite a bit of relief (especially from the vomiting) with Imitrex. I have not tried Topamax yet, but I am considering it.
If you don't mind, could I ask you some questions? You were given Lamictal to prevent migraines? And you also were tried on prednisone for the migraines? Are there any other meds you've tried?
I'm curious about the cluster theory - when you have them, is the pain more like a cluster headache than a migraine? (My general understanding of cluster headaches is that the pain is worse than migraine but lasts 1 hour or less, and may recur over several days.) And are you now seeing an adult neurologist?
Good luck with the Topamax, and as I said, I'm happy to compare notes!
> I’m new here – I'm glad I found all your comments. I was recently put on Topamax for migraine (my full history follows - I didn't want to bore everyone at the beginning) starting at 30mg per day (2 15mg pills instead of 1 25mg pill) and maxing out at 240mg within 8 weeks. I wondered if anyone thought the difference in mg would make a difference. I'm also a business student and hoping the side effect of "fuzzy brain" that everyone keeps mentioning won't be too much of a hindrance in my classes. Does anyone have any tactics that have helped them?
>
> I've suffered from migraines (originally thought to be cluster due to short-two-week-absences) since I was a junior in high school (roughly 10 years) with all theories ending up in the garbage can and no relief. Recently, my younger sister was treated for a type of epilepsy that was very similar to bipolar, which included horrendous vomiting episodes, behavioral problems, eating disorders, anxiety disorders, and other problems. Because of our genetics (alcoholism, anxiety disorders, etc), her pediatric neurologist allowed me as a patient. She first put me on Lamictal to which I broke out with an allergic reaction after a week and a half. While I was on Lamictal, my migraines were worse, my psycho dreams were more common and more psycho, and I was very dizzy. The Prednisone was not much better. She's now trying Topomax and I'm afraid of a reaction as well as the side effects. I think we’re going in the right direction due to the fact that the Lorazepam (Ativan) works wonderfully when a migraine does slip through while I’m getting my dosage up. I’m just hoping the side-effects don’t cause more distractions than the migraines themselves.
>
Posted by dave1 on June 24, 2003, at 9:37:06
In reply to Re: Topmax for Migraines » Sprgrvr, posted by Snoozy on June 23, 2003, at 23:14:49
Hi,
My mother takes 6 fiorinal a day for migranes. Do topomax or these other psycotropic drugs work better?
Thanks,
Dave
Posted by starlight on June 24, 2003, at 11:21:08
In reply to Topmax for Migraines, posted by Sprgrvr on June 23, 2003, at 17:02:37
I think there's definitely a correlation. I'm diagnosed bipolar, as are several other family members on my mother's side. My sister suffers from horrible migraines, with as many as perhaps 10+ a month. Her neurologist just put her on Topomax as well - in addition she takes Imitrex and a new one, Amerge. I need to find out how she's doing with those meds. I'm sure the fact that she's a school teacher doesn't help!
starlight
Posted by Maxime on June 24, 2003, at 12:13:51
In reply to Re: Topmax for Migraines, posted by starlight on June 24, 2003, at 11:21:08
Hi Starlight, do you post on the "Depression Forums"?
Max
Posted by Sprgrvr on June 24, 2003, at 12:35:50
In reply to Re: Topmax for Migraines » Sprgrvr, posted by Snoozy on June 23, 2003, at 23:14:49
Thanks for the questions. I know I'm not going to explain this very well because I'm not bilingual with the language of neurology - I've lost a lot of faith in it after each new doctor questioned why the previous one put me on a certain medication (mainly an otc painkiller). I learned to just deal with my migraines and became Advil's #1 customer. I’ve come a long way since I met my last doctor.
When my sister's (she's twelve) symptoms were questioned as a form of epilepsy instead of bipolar or ADHD, her pediatric neurologist questioned whether my migraines were a form of overfiring, just in a different lobe than hers, though that is the only obvious symptom we have discovered so far. She gave me Lamictal for the firing. When I reacted, I was given Prednisone as a form of Cortisone.
When the migraines first started, we had theories of sinus infections, eye strain to which I got glasses, allergies (milk, etc.), tension headaches to which I went to a chiropractor, and found no relief to the headaches. What was baffling, was that the headaches seemed to be pretty intense every day for six weeks with a two week suppression, in a constant cycle. They were not as intense as cluster headaches but had the cycle pattern.
My current doctor is a pediatric neurologist at the Primary Children’s Medical Center who is also researching the genetic link. My brother has also shown signs, though differently from my sister and I.
Posted by starlight on June 24, 2003, at 13:40:36
In reply to To Starlight, posted by Maxime on June 24, 2003, at 12:13:51
Nope - this is the only mental health forum I participate on.
Starlight
Posted by Snoozy on June 24, 2003, at 14:46:05
In reply to Re: Topmax for Migraines » Snoozy, posted by Sprgrvr on June 24, 2003, at 12:35:50
I don't speak the language either :) I don't know how many doctors I've seen, and all they can do is shrug their shoulders about what's going on with my migraines. I keep chugging along though. If it weren't for the Imitrex, I am certain I would not have been able to live with the migraines all these years.
I forgot to mention that I've had daily chronic tension headaches that started along with the migraines. I was on Darvocet for many years for those, and every so often my doctor would tell me about rebound headaches and analgesics. About 2 years ago, I tapered myself off of the Darvocet, and it really did make a difference in the tension headaches. But now I've been having to take Imitrex every day for several months.
Have you ever tried any of the triptan medications? I have read that migraine in children can manifest differently than in adults. I'm not familiar with pediatric neurology, but I wonder if a consultation with an adult neurologist (one that specializes in migraine) would be helpful. There are a few others in my family that have migraines, but nothing like what mine are (I'm so special ;)
Posted by Snoozy on June 24, 2003, at 15:04:52
In reply to Re: Topmax for Migraines, posted by dave1 on June 24, 2003, at 9:37:06
Hi Dave -
Is your mother taking the fiorinal every day, or just when she has a migraine (or does she have a migraine every day)?
I took Tylenol w/codeine and sometimes fiorinal for my migraines about 10 years ago, before the triptan medications came out. My experience was that they lessened the pain somewhat, but most of the benefit I got from them was that they helped me sleep through the migraine.
Topamax and other psychotropics are used to prevent or lessen the frequency of migraines, and they do work for a lot of people. I don't know if you're familiar with the triptans, so forgive me if this is old news to you. Triptans (Imitrex, Maxalt, Zomig, Amerge, Frova, etc) are not painkillers like fiorinal (they are not analgesics at all). I can't tell you exactly how they work, but it's along the lines of affecting the chemistry of what happens during a migraine. They don't work for any other kind of pain, just migraine. Side effects are pretty minimal (for patients with a healthy heart). They are very expensive though.
If your mother has never tried a migraine prophylactic medication, I think it would be worth checking out.
> Hi,
>
> My mother takes 6 fiorinal a day for migranes. Do topomax or these other psycotropic drugs work better?
>
> Thanks,
>
> Dave
Posted by Sprgrvr on June 24, 2003, at 16:29:35
In reply to Re: Topmax for Migraines » Sprgrvr, posted by Snoozy on June 24, 2003, at 14:46:05
I went to an adult neurologist back in 1997 at which time I had an MRI for my migraines. She apparently was looking for something physical to attribute the pain to and when nothing resulted pretty much told me that I was causing my own headaches. My GP put me on the painkillers and advised me to try other theories which I mentioned before. Since then, I arrange my school work around my headaches, got used to changing my plans midstream, always have drugs on me, take four Advil with my vitamin C every morning hoping it will stop most of whatever I'm in store for, and stay away from my triggers.
It wasn't until my mother started talking to my sister's doctor about my migraines that I toyed with the idea of being a guinea pig for my headaches again. When a doctor tells me I'm someone who just has to live with the pain, I'm naive enough to believe them.
I also have blackout spells to which another doctor told me I'm just a person who blacks out. With my last blackout, which resulted in a concussion, my new gp (who happens to be a FNP and a keeper) started putting me through an onslaught of testing. She encouraged me to see a neurologist among other specialists. Fortunately, I'm single and my insurance hasn't complained yet.
I'm a fairly healthy individual despite my migraines and hate doctors. I don't know what questions to ask and, since I believe everything they say, I avoid them so I don't have to hear it. I've pretty good luck recently, except my reaction to Lamictal, and haven't experienced hardly any side-effects to the Topomax (cross my fingers).
Posted by Snoozy on June 24, 2003, at 16:55:37
In reply to Re: Topmax for Migraines » Snoozy, posted by Sprgrvr on June 24, 2003, at 16:29:35
Wow - doctors told you that you were causing your own headaches and you're just someone that blacks out? I understand why you hate doctors! I'm sorry you've had to go through this.
I've had CAT scans and MRIs too. Brain tumors are extremly rare, but doctors tend to be cautious and order the tests to rule this kind of thing out. Just because nothing shows up on these scans does not mean there isn't something going wrong. I would say the only way I was causing my migraines is if I sat around drinking bottles of red wine (a trigger for me)all day.
I would be concerned about taking ibuprofen or other NSAIDs every day - not just rebound pain, but GI bleeding. (sorry, I don't mean to scare you)
What happens when you have a blackout? Do you have any warning signs or symptoms beforehand? I can't believe a doctor would just let that go! Has anything turned up on the testing so far?
I've found forums like this very helpful in figuring out what I should ask a doctor, and just gaining some general knowledge.
Did I ask whether you had tried Imitrex or other triptans?
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.
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