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 Unregistered(d) |
Re: Depakote | #21 | ||
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Posts: 0 11/02/02 06:56
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Well My Pdoc decided that he wanted me to try
Topamax before trying Lamictal. He said I need to try it
for the pain killing properties.
I am starting at 25 mg and we are not EVEN gonna talk about going up until we see how I tolerate this amount. He discontinued the Lexapro. YAY. So wish me luck. |
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kiturah |
Re: Depakote | #22 | ||
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Posts: 8033 11/02/02 07:24 Medical Consultant
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Good luck, then. It was very hard at the start for
me, but it is fine for me now.
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Unregistered(d) |
topamax for migraines | #23 | ||
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Posts: 0 11/30/02 23:13
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I've been taking topamax for migraines for 9 months
now. I was on 100 mg for 8 months and my neuro increased
me to 125 about a month ago. About 6 weeks ago, I started
noticing that I was losing a lot more hair in the
shower....and then just recently I noticed that I have
become EXTREMELY thin on my scalp. I have nothing else to
contribute it to but the Topamax. I am so dissappointed
about this. I really don't even know what to do. My
migraines are finally under control...and as an added
bonus, I've managed to lose 51 pounds! I had other crummy
side effects in the beginning, but they all went away
with time, and Topamax didn't bother me at all. Now, all
the sudden, I'm going bald. WHY? It isn't even listed as
a side effect. I wrote to the makers of Topamax, and am
wating for a reply. I want to know why when so many users
(I've done research on other boards) have this side
effect, it is just hard for me to believe that the side
effect wasn't seen more in the clinical trials??? go
figure! I have been taking vitamins to try to combat this
problem (centrum, selenium, zinc, magnesium, and biotin)
for about a month...but no luck so far...just keep
pulling out handfulls. Anyone else on this board?
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kiturah |
Re: topamax for migraines | #24 | ||
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Posts: 8033 12/01/02 00:02 Medical Consultant
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Hi there Pixie. I presume your scalp looks
completely normal or you would have said
something?
I will tell you that I don't trust pharmaceutical companies. Over and over they have suppressed data initially so I certainly believe they could be now. As it happens, my hair is about normal from before I started this med. Hypothyoidism can have hairloss as an early symptom also. Good luck. I actually heard a patient who had hair loss for another reason being treated with hydroxychloroquine, which I am on for pain, with no autoimmune diagnosis, from a pain doctor, (and which cut my burning in half). At any rate the other patient who had severe hair loss had hair regrowth although that wasn't expected. She was quite pleased. That's all I can think of to add right now. Good luck. |
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Unregistered(d) |
thanks | #25 | ||
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Posts: 0 12/02/02 00:09
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yes, my scalp looks normal. White as can be
now...what with it being winter! lol
I'm just so frustrated. I didn't even wash it yesterday (just put a shower cap on) because I seem to lose so much in the shower. Of course I could get away with that on a Saturday...otherwise I have to wash it every day.  I have done
a little more research and am going to go buy some Nioxin
shampoo products today (what they suggest for thinning
hair...guess they even suggest it for cancer patients.) I
also upped my biotin. I'm calling my neuro tomorrow and
will see what her advice is. I hope to decrease and maybe
get this under control. If not...I'm going to have to go
off it, and look for other alternatives. I just get so sick of that. It stinks when you finally find something that works for you...and now this. My mother said "well, weigh it out...your hair or the migraines"...and I know this sounds very vain, but their must be some way for me to have no migraines and keep my hair! I think my family has just seen how free I have been the past 9 months with out having the pain 6/7 days a week! I guess it's back to the drawing board. |
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kiturah |
Re: thanks | #26 | ||
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Posts: 8033 12/02/02 01:12 Medical Consultant
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I just wanted to mention that old time medicine,
the beta blockers broke my migraines when they picked up
several times. Until my asthma got so bad I couldn't take
them, every time I got more frequent migraines, I would
get started on a beta blocker and it would cut the
frequency of migraines to really low or none.
When I was just starting graduate school, my first advisor was a neurophysiologist who was also an M.D. The very first beta blocker had come out and speculation had been raised that it might work for migraines. Noone knew in what dose, so he gave me an itsy bitsy tiny dose and had me take that, and it worked. Nowdays people laugh at that dose, but noone what doses meant then, so they were safe. Later docs gave me several different beta blockers and because I had done okay with them in spite of some asthma and I was very pushy let me keep trying (though asthma is something of a contraindication). They always stopped the frequency. And don't forget high dose CoQ10 and magnesium and butterbur. I hope you find relief. |
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DollieReed |
Re: thanks | #27 | ||
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Posts: 1901 12/02/02 07:49 Special DollBaby |
I was on a medication at one time for my high blood
pressure that didn't list hair loss as a side effect but
I had it... I looked like I was going through chemo I had
so little hair finally my Dr switched my blood pressure
meds and my hair started to grow back, maybe there is a
different brand of the medication that you are currently
taking that has less of the effect of hair loss than what
you are currently taking.
Dollie |
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MeBColes |
Topamax, Depakote, Beta Blockers, et al..... | #28 | ||
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Posts: 6 12/11/02 11:28 |
I have a funky neurological misfire they call a
"crash" migraine. Essentially, I've had
a migraine, non-stop, since May of 2000. Luckily for me,
it can be "dampened" by anti-seizure
drugs. The beta-blockers did nothing but drop by blood
pressure. The Depakote worked like magic (1000mg of
Depakote ER). It also graced me with 30 extra pounds in 2
months and turned me into a Stepford wife. And then the
FDA approved Topamax. It isn't as perfect as Depakote was
at my final dose, but then again, I'm not at my final
dose! One thing to remember about Topamax is that it is
designed to be raised incrementally (read a study on
this). You're supposed to go up 25 or 50 mg, wait for the
side effects to subside, and THEN go up again. You're not
supposed to just be whammed up the mg ladder the way some
docs are ought to do.
I started on Depakote when I lived in Belgium, and the way they deal with migraine over there is with a combination of prophylactics (Depakote), anti-inflammatories (Naproxen Sodium), and anti-emetics. Their theory is that the nausea causes the migraine, not the other way around, so I would first take the anti-emetic, and if that didn't knock it out, then I would take a Naproxen (440mg). That usually did the trick (this was before my Depakote was in full force, or when I had break-throughs at menses). After that, it would be the Imitrex shot (insert brain meniscus burning shudder here). About a month and a half ago, I got tired of none of my clothes fitting, and my weight doing nothing but going up, so I asked to be switched to Topamax. It was a very painful switch. I am now up to 150mg and I am definitely no longer a Stepford Wife. I'm quite awake. The "tingling" in my feet and hands really only happens when I'm over tired, and the "losing of words" is something I'm just having to work around. I'm practicing my "wise woman" look to make people think I'm being a sage -- instead of searching for verbs! Seriously though, as my body is aclimatizing to the med, the words are coming more freely. One other accidental discovery: I am no longer able to take Naproxen due to some GI problems and was put on a new NSAID called Bextra. I'd never heard of it. But you know what? I haven't had a single break through headache, and I'm ON my period! That hasn't happened in 2 years. If this holds for another couple of months, I'm willing to vouch for a Topamax/Bextra combo for migraines. Then again, my best friend's neuro had her start taking one aspirin at bedtime, and her 10 year recurring migraines stopped. Just my 2 cents, hope the info helps someone. b |
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Unregistered(d) |
Re: thanks | #29 | ||
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Posts: 0 12/11/02 14:47
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hi my friends, so sorry I'm just seeing this ow- I,
too, am taking topomax, I amm up to 100mg each night at
bedtime- I do feel "fuzzy", and burn
LOTS- especially in my FEET!
but I am DEFINITELY sleeping better- that is when I finally am able to actually, physically GO to bed I take b vitamin complex too- over the counter brand tho THANKS FOR ALL THE INFO KIT AND EVERYONE!  |
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Unregistered(d) |
Fibromyalgia, CFS, topamax etc | #30 | ||
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Posts: 0 01/02/03 13:07
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Hi all! Hope you all don't mind a 50 yr old male
stopping in to see you all!
 I too have
been Rx'd Topamax and am worried about the side effects!
I was on it once a bit back but had some vision problems
and they took me right off and then I had cataract
surgery in both eyres with implants Don't know for sure
if this was caused by topamax or not but now the new Dr
puts me back on when I complained of weight gains? and
now the vision problems are coming back? But I am
sleeping better so go figure but I sure don't want to
risk my vision Any of you had this type problem? I was on
Gabitril and when they took me off it my jerks and jumps
quit it was causing more trouble than it helped! I was
diagnosed with FMS myofascial etc about 2 and 1/2 yrs ago
after yrs of arthritis treatment which I didn't have. A
doctor make the wrong diagnosis? Well sorry to ramble but enjoyed your site and your comments. If you don't mind I might ck back at times? If you would rather not have a male here please let me know and I will honor your wishes! My email is: bulldog1@midwest.net so feel free to send me a line Thanks and wishing you all some painfree times |
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Unregistered(d) |
topamax got me too | #31 | ||
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Posts: 0 01/03/03 02:26
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Hello all,
Glad I found this page. Just wanted to drop a line. Supposed to be working here, but wanted to find out about this b12 thing. My levels are severely low and I am getting this shot every other day now. I am taking 100 mg of topamax a day and have been for about a year now. I feel like hell though but the pain has managed to subside some what. Just cant believe the side effects. Your page was a nice in-sight however and will talk to my Dr. about it some more....since he could not explain to me why my b12 was so low in the first place! |
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kiturah |
Re: Fibromyalgia, CFS, topamax etc | #32 | ||
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Posts: 8033 01/03/03 05:40 Medical Consultant
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Welcome Bulldog and Scoot. Bulldog, we certainly
welcome males, we need some more balance. I hope you will
stop by frequently. Scoot, unfortunately I just blinded
myself to your post in trying to be able to see both-I
never seem to be able to figure out when I will more than
one. I am a slow learner of the ins and outs on the
boards. (Why you never see me at graphics.)
Nevertheless, I remember you were interested in the B12-topomax link. There is a neurologist, whose name I have buried deep in my files if I still have it at all, who is going to publish on this. Medical publications are very unfriendly to first time authors-politics and average time to press for published authors is still long. He wasn't remotely ready to go when I knew about it, and may have dropped the ball, but it hasn't been published yet. Remember, even people who do not have malabsorbtion of B12 (pernicious anemia) seem to do better with the under tongue than the oral stuff, and it makes a big difference in chasing down the 5,000 mcg dose. Bulldog, I just chased down the list of side effects of topamax, and will print them at the end. The most important eye effect looks like acute narrow angle glaucoma, but there are several. But it seems to me that most important thing is that off topomax you were not having a symptom that showed up with it, and now that you are back on topomax, it has returned. Believe your body before you believe anything else-you have a direct line to it, and noone else does. Some jumps and jerks are ameanable to nutritional supplements primarily if you are on psychoactive medicine (which is used for many things including pain.) Topomax side effects:More Frequent ASTHENIA severe ATAXIA severe BREAST PAIN (IN FEMALES) CHANGE IN MENSTRUATION severe CONCENTRATION DIFFICULTY severe CONFUSION severe DIPLOPIA severe DIZZINESS severe DYSMENORRHEA severe IMPAIRED MEMORY severe NAUSEA NERVOUSNESS severe NYSTAGMUS severe PARESTHESIA severe SOMNOLENCE severe SPEECH PROBLEMS severe TREMORS VISUAL CHANGES severe ** this is what you meant?** Less Frequent ABDOMINAL PAIN severe AGGRESSIVE BEHAVIOR severe AGITATION severe ANOREXIA severe BACK PAIN CHANGE IN TASTE CHEST PAIN CHILLS severe CONSTIPATION DYSPEPSIA GINGIVITIS, ACUTE OR CHRONIC severe HOT FLASHES INCREASED SWEATING LEG PAIN LEUKOPENIA severe MENTAL CHANGES severe MENTAL DEPRESSION severe MOOD CHANGES severe PHARYNGITIS severe WEIGHT LOSS severe Rare or Very Rare ANEMIA severe CONJUNCTIVITIS severe DECREASED LIBIDO severe DYSPNEA severe DYSURIA/URINATION DIFFICULTY severe EDEMA severe EPISTAXIS (NOSE BLEEDS) severe EYE PAIN severe HEMATURIA severe IMPOTENCE severe INCONTINENCE severe MYOPIA severe PRURITUS severe RENAL CALCULI severe SECONDARY NARROW ANGLE GLAUCOMA severe SKIN RASH severe TINNITIS severe URINARY FREQUENCY severe Cautions from AHFS DI™ |
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Unregistered(d) |
headachs & Topomax | #33 | ||
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Posts: 0 01/08/03 00:34
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Hi, I was reading what you wrote about Topomax and
your headachs. Thought that maybe you could enlighten
me...
I'm 48, have had headachs all my life. I take Depakote for migraines. I have for several years now and it has been a Godsend. However, lately it is not working so well, and I have been taking ALOT of ibubuprofen, some Vicodin, sudafed etc. All of which don't help. None of the abortive drugs help, like Imatrex, Midrin, etc. I am thinking about asking my Doctor about Topomax, but I read about Glaucoma in your comments to another. My mother and 17 year old son have Glaucoma. Does Topomax cause it also? Do you know a web site that I can find out about all the side effects of Topomax? I can't seem to find one. I appreciate any help you can give me. Thanks, Kim |
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Unregistered(d) |
Topamax | #34 | ||
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Posts: 0 01/24/03 10:05
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Hi I was just reading what you all were reading
about the stuff and i have just recent started it and
gone off neurontin i have a 360 fusion done on my lower
back and still have extreme pain in my left leg and back
i am really hoping that this will help ... has anyone
else used this med. for back and leg pain ... i really
would like to get on with things and go back to work...
:
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kiturah |
Re: Topamax | #35 | ||
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Posts: 8033 01/24/03 13:37 Medical Consultant
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Kim, sorry I missed you. Topomax rarely causes
acute severe narrow angle glaucoma.
Kristi, my story about going on topomax is the 17th post in this section, it's on tan instead of white, the caption changes to my story, and it is long instead of a short post. It was for generalized pain, back and leg being big players but neck was right up there too. Everything else was less. Welcome, both of you. |
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Rositaema |
Re: Topamax | #36 | ||
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Posts: 597 01/25/03 03:34 Liberty Belle
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I'm still torn on whether to go back on it or not.
The neurologist said it is up to me. My migraines are out
of control, but I did not notice a difference by the time
I ran out & the side effects were a problem. Also
running out, I had a pretty severe reaction to stopping
like that. (Yes the doctor chewed me out)
Okay - I see I didn't answer the dosage question. I believe at the time they ran out I was on 25 mg for four a day. (2 in AM & 2 at night) Shouldn't I have started noticing an improvement by then? I still don't know whether to try again. |
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kiturah |
Re: Topamax | #37 | ||
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Posts: 8033 01/25/03 05:10 Medical Consultant
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Rosi, I don't know. I 've read it is used for
headaches. You were on 100 mg a day which is a
significant dose. Dosage is decided by the doc, and I'm
up to 400 a day and still get bad migraines. Every person
I've talked to personally who was put on it for headaches
did not have an outstandingly good result.
That is my "real world" friends, as opposed to my net world friends. for some reason, with my terrible memory, I have much more difficulty in remembering the results of trials of meds by networld friends. Maybe they will along and say. I am absolutely dependent on topomax. I think it would take a couple of months at least to wean me off it. It is not a drug you can stop suddenly after to you have built up to a high dose. I think medscape may have a new article about headaches on it if you search. |
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Unregistered(d) |
topomax | #38 | ||
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Posts: 0 02/28/03 10:02
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I am so glad I came upon this sight, I started
taking topomax about a month and a half ago and I am
getting very forgetful with poooor concentration I have
been thinking about stopping the med. But I think I will
hang in alittle longer and see if it clears up . Thanks
for the helpful insight!!!!!!!!!!!!!!!!!!
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EBGirl |
Re: Topamax ezboard | #39 | ||
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Posts: 20143 04/13/03 08:03 Co-Founder
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If you want to visit our Support Group's forum for
health problems,
Click here Or do you want to join our general chat? Click here If you want to see all the different forums for our support group, go to the front page by clicking here If you want to read about why we created this message board, click here |
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Unregistered(d) |
Topomax, a/k/a Stupomax | #40 | ||
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Posts: 0 03/16/04 03:10
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Topomax is known as stupomax among people with
bipolar disorder where daily doses are usually in the 400
mg. range. BEWARE of this drug.
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