Reply to Emerald And My Current Experiences Topomax Posted: 05-11-06 18:24pm
Emerald,
i agree with sheila,
with medications you have to stick them
out for a little bit because it takes your
body a while to get used to the effects.
But at the same time, if these symptoms
carry on too long it is not good for your
over-all health and well being. Inform
your doctor of your side effects
immediately and that way it is on file so
you too can monitor the effects together
(really important). Feel better!
Just started topomax myself. On a really
low dose. Already noticed, tingling in
the hands, loss of apetite, nausea and
difficulty concentrating. Headaches have
not decreasing, but I have been studying
pretty hard with my neck in awkward
positions (may be contributing to the
headaches). Im nervous about the lack of
concentration as I cannot afford that in
my program. Im kind of surprised my
doctor put me on this medication first, as
it does seem to have pretty bad side
effects and people have written that it
seems to be the drug of last resort!!!
Might have to look into that a little
more!! Any other ideas of medications
people have taken for chronic daily
headaches with intermittent (1-2 month)
migraines?
|
mgarland
New User, Becoming EHEALTHy
Joined: 12 May 2006 Posts: 1
Just Started Topomax.....taste Perversion? Posted: 05-12-06 16:23pm
Hi. I am so glad I ran across this site.
I am a migraine sufferer since I was a
teenager (i'm now 34). I've been on
cafergot (nearly killed me, literally) and
maxalt. The maxalts help when I get
migraine, but i'm still getting almost
10migrains a month and my insurance will
only cover 6 maxalts a month. At $23 a
pill it's getting a little expensive to
buy the extra maxalts, so my doctor wants
to try me on topomax. I just started it
4 days ago. I've read all the info and
posts on it. The only thing that
concerns me is the kidney stones, since I
have a history of having them as does my
family. I've been hospitalized twice for
stones. But I can increase my water
in-take and be careful about my carbonated
drinks and milk products which is what was
causing my stones. Here is my
question.....
After reading all of the posts, I did not
see this addressed....Unless I missed it.
Have any of you had your tastes change
once you were on topomax? I am a mello
yello, mountain dew lover. I have to
limit them due to stones, but I
occasionally savor one with a pizza or
movie. This week i've tried to drink
four different kinds of softdrinks (mello
yello in a can, mountain dew from a
fountain machine and coke and sprite from
2litres) none of them tasted right and I
threw them away. They tasted flat at
first, and then when I swallowed they
burned my throat!! How weird is that?
Has anyone dealt with any taste changes
and if so, is this a predecessor to more
serious side affects?
Thanks,
michelle
|
marionalma
New User, Becoming EHEALTHy
Joined: 03 May 2006 Posts: 8 Location: NJ
Just Started Topomax.....taste Perversion? Posted: 05-12-06 17:13pm
I definitely had a taste perversion, too.
Also, it left a bitter taste all day in
my mouth. Now that I am completely off
the topamax I do not have that taste
anymore.
Marionalma
|
beans1078
New User, Becoming EHEALTHy
Joined: 31 May 2006 Posts: 6
On Topamax For 1 Year Posted: 05-31-06 14:12pm
I have been on topamax for one year and I
have to say it has helped a lot. I was
taking 8 advils a day for my headaches
everyday. Now I get maybe once every 3
months. The side effects are rough. When
I started it I was 126 lbs. Now I weigh
94 lbs. I can't drink soda because it
taste like metal. In the beginning I
started at 25mg for 4 weeks I had the
tingling and numbness, I was always tired
and depressed, muscle spasms in my hands
and memory forget that I couldn't remember
anything. I then went to 50mg and got
tingling in my hands and feet still
couldn't eat anything whenever I would
even think about food I would feel
nausous. I was at 50mg for 6 weeks then
went to 75mg I was on that for 2 days and
went back to 50mg because I couldn't take
the side effects. I had tingling in my
neck that it felt like my throat was
closing. I waited 2 more weeks then went
back to 75mg and was ok still had usual
side effects. Then 100mg was able to eat
but not a lot still had tingling and
numbness usually in the morning my eye
would twitch. Then up to 125mg after 4
weeks no side effects. Then 150mg still
no side effects but able to eat. Was at
150mg for about 2 months. I saw my Dr.
And he couldn't believe how much weight I
lost that he wants me off it as well as
everyone else. They say I look sick
because I got so thin. I asked him if
topamax can make your hair fall out and he
told me it is because I am malnutrioned.
I had to ween off it 150mg down to 125mg
for 2 weeks then 100mg for 2 weeks then
75mg for 2 weeks, 50mg for 2 weeks, now I
am at 25 mg for the next 1 1/2 weeks.
After that I have to take it every other
day for 2 weeks.
I do find that as I come off it that
whatever side effect I had at that mg in
the beginning I am having now. I haven't
had the tingling in awhile or the
depression or not being able to eat but
now I do again. Has this happened to
anyone else???? Also now when I do eat I
have major stomach pains. And I am soooo
thirsty all the time. Just as I drink
something 2 minutes later I feel like I
haven't had anything to drink in months.
If you can handle the side effects I have
to say topamax has worked wonders for my
headaches but now I have to deal with the
fact that I can't eat.
|
francez
New User, Becoming EHEALTHy
Joined: 07 Mar 2006 Posts: 3 Location: San Francisco, California
Weight Loss And More After One Year On Topomax Posted: 06-04-06 01:38am
Hi annaleelobes and anyone reading,
i have been on topomax for a tad over one
year now. After 12 years of horrible
migraine/cluster (call 'em what you like)
headaches, I was extremely hopeful.
Nothing worked for me before this: the
triptans did nothing except cause cardiac
issues, pain killers took the edge off
just so that I could fake making it to
drive kids to and fro and
semi-function,though always in pain, any
of the others did not work. Topomax was
offered and I accepted. As I sit here
typing this, I feel as though I am nearly
dead, not just mentally but physically as
well. I had to titrate up to 200mg a day
for the med. To help and with that...Eat?
I was not big at the start and I am now a
skeleton. The thing is, i, like the rest
of you who are here, was so happy at life
with a 20-30 day period of no headaches
that I failed to see me. People would run
into me and their mouths would fly open
and the words "you are soooooo thin..."
and I didn't see it. True that a size 0
was falling off of me and I no longer
looked at recipes or knew what to buy for
food, eat? I caution all of you to be
careful . My family failed to hear me,
failed to see me. I am very afraid of
what I have lost. Mentally it has been
weird, but that you can regain. It is the
physical that you need to be very aware
of. My heart does not seem to be beating
normally. Things took so long because of
the mental haze! I am afraid I have lost
too much. Oh, I also lost friendships
because of the strange things that I
apparently said on this stuff..Boy that
helped me isolate and fade into the
sunset! I haven't a clue what to do at
this point. I only know that I have to
get off this heavy duty drug. Can't live
with my headaches, can't live with
topomax. There has to be something else.
Just has to be. This in one heavy duty
anti-seizure medication. Whole brain.
Think about that one. Hard to think when
you are in the haze of the moment.
I would love to hear back from other
longtime users..Topomax that is. Also,
forgot to mention hair..What hair!
Loosing that too. Just like the digital
camera, and the....Careful when you first
start because you manage to lose things.
Forgive any spelling errors. Topomax will
steal your ability to spell and then to
care whether it is right or not. Sorry, I
do not mean to sound so doom and gloom but
this is one serious drug and you need to
really be watched by someone other than
yourself. I did not have that other
person.
The best to all
annaleelobes
wrote:
hi shelia,
i just read your post. You didn't
mention any weight loss in the month and
half that you have been taking topomax.
Have you noticed any weight loss yet?
I'm on this site investigating the weight
loss aspect of this drug.
Thank you,
annaleelobes
|
francez
New User, Becoming EHEALTHy
Joined: 07 Mar 2006 Posts: 3 Location: San Francisco, California
Weight Loss And More After One Year On Topomax Posted: 06-04-06 01:42am
Hi annaleelobes and anyone reading,
i have been on topomax for a tad over one
year now. After 12 years of horrible
migraine/cluster (call 'em what you like)
headaches, I was extremely hopeful.
Nothing worked for me before this: the
triptans did nothing except cause cardiac
issues, pain killers took the edge off
just so that I could fake making it to
drive kids to and fro and
semi-function,though always in pain, any
of the others did not work. Topomax was
offered and I accepted. As I sit here
typing this, I feel as though I am nearly
dead, not just mentally but physically as
well. I had to titrate up to 200mg a day
for the med. To help and with that...Eat?
I was not big at the start and I am now a
skeleton. The thing is, i, like the rest
of you who are here, was so happy at life
with a 20-30 day period of no headaches
that I failed to see me. People would run
into me and their mouths would fly open
and the words "you are soooooo thin..."
and I didn't see it. True that a size 0
was falling off of me and I no longer
looked at recipes or knew what to buy for
food, eat? I caution all of you to be
careful . My family failed to hear me,
failed to see me. I am very afraid of
what I have lost. Mentally it has been
weird, but that you can regain. It is the
physical that you need to be very aware
of. My heart does not seem to be beating
normally. Things took so long because of
the mental haze! I am afraid I have lost
too much. Oh, I also lost friendships
because of the strange things that I
apparently said on this stuff..Boy that
helped me isolate and fade into the
sunset! I haven't a clue what to do at
this point. I only know that I have to
get off this heavy duty drug. Can't live
with my headaches, can't live with
topomax. There has to be something else.
Just has to be. This in one heavy duty
anti-seizure medication. Whole brain.
Think about that one. Hard to think when
you are in the haze of the moment.
I would love to hear back from other
longtime users..Topomax that is. Also,
forgot to mention hair..What hair!
Loosing that too. Just like the digital
camera, and the....Careful when you first
start because you manage to lose things.
Forgive any spelling errors. Topomax will
steal your ability to spell and then to
care whether it is right or not. Sorry, I
do not mean to sound so doom and gloom but
this is one serious drug and you need to
really be watched by someone other than
yourself. I did not have that other
person.
The best to all
annaleelobes
wrote:
hi shelia,
i just read your post. You didn't
mention any weight loss in the month and
half that you have been taking topomax.
Have you noticed any weight loss yet?
I'm on this site investigating the weight
loss aspect of this drug.
Thank you,
annaleelobes
|
francez
New User, Becoming EHEALTHy
Joined: 07 Mar 2006 Posts: 3 Location: San Francisco, California
Weight Loss And More After One Year On Topomax Posted: 06-04-06 01:45am
Hi annaleelobes and anyone reading,
i have been on topomax for a tad over one
year now. After 12 years of horrible
migraine/cluster (call 'em what you like)
headaches, I was extremely hopeful.
Nothing worked for me before this: the
triptans did nothing except cause cardiac
issues, pain killers took the edge off
just so that I could fake making it to
drive kids to and fro and
semi-function,though always in pain, any
of the others did not work. Topomax was
offered and I accepted. As I sit here
typing this, I feel as though I am nearly
dead, not just mentally but physically as
well. I had to titrate up to 200mg a day
for the med. To help and with that...Eat?
I was not big at the start and I am now a
skeleton. The thing is, i, like the rest
of you who are here, was so happy at life
with a 20-30 day period of no headaches
that I failed to see me. People would run
into me and their mouths would fly open
and the words "you are soooooo thin..."
and I didn't see it. True that a size 0
was falling off of me and I no longer
looked at recipes or knew what to buy for
food, eat? I caution all of you to be
careful . My family failed to hear me,
failed to see me. I am very afraid of
what I have lost. Mentally it has been
weird, but that you can regain. It is the
physical that you need to be very aware
of. My heart does not seem to be beating
normally. Things took so long because of
the mental haze! I am afraid I have lost
too much. Oh, I also lost friendships
because of the strange things that I
apparently said on this stuff..Boy that
helped me isolate and fade into the
sunset! I haven't a clue what to do at
this point. I only know that I have to
get off this heavy duty drug. Can't live
with my headaches, can't live with
topomax. There has to be something else.
Just has to be. This in one heavy duty
anti-seizure medication. Whole brain.
Think about that one. Hard to think when
you are in the haze of the moment.
I would love to hear back from other
longtime users..Topomax that is. Also,
forgot to mention hair..What hair!
Loosing that too. Just like the digital
camera, and the....Careful when you first
start because you manage to lose things.
Forgive any spelling errors. Topomax will
steal your ability to spell and then to
care whether it is right or not. Sorry, I
do not mean to sound so doom and gloom but
this is one serious drug and you need to
really be watched by someone other than
yourself. I did not have that other
person.
annaleelobes
wrote:
hi shelia,
i just read your post. You didn't
mention any weight loss in the month and
half that you have been taking topomax.
Have you noticed any weight loss yet?
I'm on this site investigating the weight
loss aspect of this drug.
Thank you,
annaleelobes
|
Whatsherproblem
New User, Becoming EHEALTHy
Joined: 11 Jun 2006 Posts: 1 Location: Los Angeles
Hello World! Posted: 06-11-06 13:33pm
Wow. I have just stumbled on this blog
and am blown away to find other people who
suffer from headaches. I'm 47 and have
spent my whole life making exuses for my
migraines and hiding out, feeling bad for
missing family events, ruining outings
with nausea and puking, followed by guilt
and appologizies and making up for lost
fun. I'm the only one in my family who
has them and my husband has spent years
pretty much thinking they are self
inflicted. They have been getting worse
in the last few years and especially bad
in the last couple months. I have abused
every over the counter med and my stomache
and have now found topomax.
I am on day four and experiencing the
loopines. I am comforted by some
postings that report this should diminish.
But even so, this is a better world than
the migraine one, so far. I just got an
amazing chiropractor, as well, and hope I
don't have to stay on the topomax for
long. But my md says at least nine
months. I'm wondering why some people
have been on it for longer than a year.
Is it because it's still a new drug and
they didnt know the long term affects?
And what if you're only on it for six
months? What then? I think I need to
find a better md that will answer my
questions. I'm already getting some
facial numbness. Oy.
Anyway, I feel better already, just
knowing there are loads of people with my
affliction out there. Don't get me
wrong, I wish you didn't have it!
Really- i'm so sorry you have to suffer...
But it's comforting to know i'm not on
the planet alone.
Hope you have a great day.
|
beans1078
New User, Becoming EHEALTHy
Joined: 31 May 2006 Posts: 6
Topamax Posted: 06-21-06 18:27pm
My last dose of topamax was sunday. I see
a change from being on it to not. I am
getting the headaches again. I had to
lower the doses as I was comming off of it
and now I have had a headache everyday. I
am taking aleve for it but life was better
on topamax. They only bad thing is now I
weigh 91 pounds and I am 27 years old.
Not good. My doctor doesn't want me to go
on it because of the weight lose so he
wants to try a new medicine.
|
aniama
New User, Becoming EHEALTHy
Joined: 01 May 2006 Posts: 5 Location: Michigan
Vitamin B12 Posted: 06-22-06 15:48pm
I went to my doctor, told him about
getting off topomax.
He wasn't happy I made this decision by
myself, but told me to try 1200mg of b12
per day. He said they have some studies
to confirm that this might help.
I'm on b12 and cellfood (dietary
supplement with oxygen (?)) for less then
a month now, I had to take 1 imitrex per
migraine twice and this was enough to get
rid of the pain.
This is vast improvement from going to er
every 5-7 days...
|
karenlon
New User, Becoming EHEALTHy
Joined: 25 Jun 2006 Posts: 3 Location: Florida
Posted: 06-25-06 18:45pm
I just started taking topamax. And I just
found this forum. I had no idea there
were so many people like me out there. I
,like some of you have had migraines
forever. I think I was about 14 or 15
and am now 60 . In the early years
doctors would pat me on the head and send
me home with nothing but "get a new
pillow". I think I was in my late 30's
when a doctor finally began to help me.
But until imatrix came on the market I was
in the er like it was my second home. It
was awful. Now lately the headache's have
been coming more often again like 5 and 6
times a week so that's why the topamax.
I'm in the first 42 days. I'm having some
of the side affects like the taste change
and the appetite thing I seem to be hungry
all the time. But not really gaining or
losing weight. I read that you should up
your water intake so I have. Any way I am
tired but push myself to do the things I
need to do or want to do. I walk 2miles
every day and 2 times a week I do aerobics
with some friends at the club house. The
other morning I started to lay down on my
bed about 10:00 in the morningfor a nap
and told myself no way! I'm hoping the
side affects go away. I plan to check
back here to see how thing are going for
some of the rest of you.
|
khcrook
New User, Becoming EHEALTHy
Joined: 27 Jun 2006 Posts: 2 Location: Ontario
Topomax And the Whole Shibang Posted: 06-27-06 09:22am
I have tried every med I could and have
been told to try some unbelievable
surgeries for 15 years of tension/migraine
headaches. A neurologist prescribed
topomax without any bloodwork (we should
all have it first). Initially, I felt
that I had a new lease on life. Very few
headaches and they were very tolerable.
But some other symptoms starting creeping
in. Anxiety, forgetfulness, extreme
fatigue, loss of motivation ( I too can
spend a day watching tv and I am normally
a going concern). Do not take any other
meds with this stuff - cough medicine,
muscle relaxants etc. My doctor did not
mention this little detail and I had a
very strong psychological reaction. When
I told the neurologist my concerns of my
mental state he felt it may be residual
headaches, and upped the dose to 200 mg.
My mental condition has worsened. I have
had two severe colds in two months
(respiratory infections is a side effect).
Yesterday, I ran a red light - that is
how stupid this drug had made me. Some
psychiatrists have nicknamed this drug
"stupimax". I had to go off this med
while writing exams as I failed one while
taking it - I knew the answers but just
couldn't get hold of them. If you think
that sounds bizzare you should experience
it. Each day my mental state becomes
increasingly questionable or I feels I
have less control over it. It seems I
have to chose between uncontrollable pain
or uncontrollable mind and emtions. I am
going to reduce my dose and go back to
migraines or i'm afraid I will lose my
mind to this drug. Some of the other
psychological effects were more severe but
too embarassing to detail on this site.
It appears to effect each of us
differently and is prescribed without due
caution for our health. Please read the
list of side effects and watch your own
behaviour.
Next I am going to try botox - it has been
found effective for those of us that
experience headaches related to muscle
tension.
|
khcrook
New User, Becoming EHEALTHy
Joined: 27 Jun 2006 Posts: 2 Location: Ontario
Addition to Previous Post Posted: 06-27-06 10:36am
First, I forgot to mention how thankful I
am to have found this forum. I wan't sure
if I was losing my mind as my doctor and
neurologist did not relate my mental
condition to the drug. Fortunately, I
found this site and with so many others
experiencing the same psycho effects, and
I have during my 6 months while taking
topomax, I think the drug is the culprit.
Next, my blanket statement about needing
bloodwork is an over reaction. Those of
us on other drugs, or with compromised
grastro-intestinal tracts (as topomax
seems to be rather tough on it), low
bicarbonate levels ( I don't have a clue
what mine is) should have our blood levels
tested according to the totpmax data
sheet and I know I have not had any blood
work done.
Thanks for all the amazing info and saving
my sanity.
|
Keshav Das
New User, Becoming EHEALTHy
Joined: 29 Jul 2006 Posts: 2 Location: NYC
Re: Topomax Posted: 07-29-06 18:28pm
vtrud
wrote:
i have been on topomax since
early in the year. I do have some
tingling in extremities. I have also
been dealing with upper right quadrant
pain since mid feb. Ultrasound for gall
stones was normal. Hida scan was
normal. Now I am seeing a gastro dr and
he has ordered an endoscopy and ab ct
scan. Has anyone heard of topomax
causing problems like this? I have all
the symptoms of gallbladder problems but
everything so far shows
normal.
yep - I had the same symptomology after
topomax. Took me 8 months to put back on
normal weight. Had two attacks of kidney
stones and all kinds of crazy crap.
Topomax is an awful drug.
|
sandyallen
Extremely EHEALTHy
Joined: 02 Feb 2004 Posts: 4580
Posted: 07-29-06 19:20pm
That is the only problem with prescription
meds, for example .Topomax, they help some
with the headaches but you lose your hair,
lose your appetite, and all other
problems. I still like immitrex for my
migranes with promethazine with a dark
room and sleep for a few hours because
without the promethazine I get nauseated
but I got nauseated before I started
taking the immitrex when I had the
migranes so I did not really feel any side
effects with the immetrex as long as I
took it at onset of the migraine but it is
getting so scarry to take anypresription
meds anymore for example, look at vioxx, I
tried it briefly but I am so sensitive to
meds like that that I cannot even take
ibuprofen. I live with pain 24/7 and
about the only thing that truly helps take
the edge off is morphine and methadone and
valium and a few others but I cannot
afford all of them plus I realize that I
must accept part of my pain and try not to
walk around like a zombie. I have tried
topomax but mostly everyone that I have
talked to have had problems so I quit
them.
All the best, maybe one of these days they
will find a real medication for us that
will not cause us problems.
|
Micalena
New User, Becoming EHEALTHy
Joined: 29 Jul 2006 Posts: 3
Topomax And Headaches Posted: 07-29-06 21:50pm
Hi all.
I had suffered from bad headaches for
years. Being almost 50, you can bet I
have tried it all. I hate the groggy
feeling most medications cause and some of
the side effects of topomax, among others,
are just plain miserable and nasty.
My friend recommended this site to me and
I was very skeptical but, as you all
probably know, the pain drives us to try
almost anything. I reluctantly tried it
and I am so glad I did. I have had a
couple of friends try it and only one
person said it didn't really work for
them. With a money back guarantee, it's
worth a try.
My last post was june 25th. I am almost
done with my second month on tomomax. So
far the only side affect I have is a
slight tingling of my one foot once in the
evening. I haven't had any drastic weight
loss. Would have liked that one. I did
get real tired at first but worked my way
through it. I have had to take imitrex 3
times in the last 2 months but that is way
less than every other day so I am happy
about that. So far I am happy with how
this is working out. I have lived with
migraine pain forever and it is wonderful
not to have it all the time. I'll check
back and tell you how it is going .
Well I thought I would let ya'll know my
experience with this medication. I have
found it to be my "godsend" medicine. I
have had migraines since I was 11 and they
were striking me almost everyday, causing
me to miss work, among many other thing in
my life. I tried many other medications
and failed them all, so my doctor decided
to try this one on for size. We got up
to 100mg (50 at bedtime and 50 in the
morning) and I have had all the side
effects. The tingling in the hands and
fingers where they feel like they are
going to go numb, the "stupid feeling"
where you have trouble finding words,
decreased sweating, increase body temp,
decrease in appetite (i lost 40 lbs.) and
to top it all off guys, I have a history
of kidney stones! Guess what? 3 months
after starting this med I got an attack.
Now I am having tests done to see the
coorelation between the two as I have
always had a high rate of stone disease.
I will be on a couple of other meds to
counteract the stone disease, and
hopefully they won't interact with the
topamax, because though I had all the side
effects, they eventually went away for me.
I still get a little of the numbness
once in a while, but the rest went
away...No more stupid feeling, or lack of
sweat. I still have a loss of appetite,
but I just make up for that with high
calorie meals. I feel it was worth it as
I am almost completely without headaches
now and have been since starting it.
Seeing the light of day through the dark I
was used to. :d
my last dose of topamax was
sunday. I see a change from being on it
to not. I am getting the headaches
again. I had to lower the doses as I was
comming off of it and now I have had a
headache everyday. I am taking aleve for
it but life was better on topamax. They
only bad thing is now I weigh 91 pounds
and I am 27 years old. Not good. My
doctor doesn't want me to go on it because
of the weight lose so he wants to try a
new medicine.
i am doing a person with migraines who was
on topopax then went off and now has been
put back on, im in that stupid stage and
dont the depressed stage I dont know how
long ill last on it, here is my question,
I am doing a little survey for myself anda
friend who is a nuurse...I read about
people who lose alot of weight on this
med...It seems most have naturally dark
hard,,i am a natural blonde and I have
never lost one pound on this
med,...Believe me I could lose alot does
anyone know the answer to why this
is...Thanks
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karenlon
New User, Becoming EHEALTHy
Joined: 25 Jun 2006 Posts: 3 Location: Florida
Just An Update Posted: 09-10-06 04:15am
I've been on this medication since june.
100mg a day and doing well so far. All
the side affects have gone away. Except
once in awhile I still get a tingling in
my feet. But the feeling has gone away.
One thing that has happen to me and I was
wondering if it happen to any on else. I
now to have nose bleeds. My blood
pressure is ok because that's the first
thing I checked. I suppose it could be
just an allergy because of the time of the
year september but I was just wondering if
topomax could be the cause? Any one have
any thoughts. Otherwise my headaches are
almost gone. And what I do get go away
way with acetaminophen.
