Topomax

[septemberrein]

Hi everyone!

[philski]

for me: i had a dull headache for the first few weeks. Nothing compared to my normal migraines but don't let it discourage you.

Working a lot better than Inderal :)

might have to play with the dose though, I was doing well at 100 for awhile but then my migraines starting coming back, I'm up to 150 now and will probably jump up higher soon... just be patient.

-philski-

[tymaboy]

The side effects are hard to handle at the beginning & everytime you up it but if you can get through them it is worth it.

[purplegdaisy]

I started on Topamax about 3 months ago. I got up to 75 mgs and had to stop. The side effects to me were worse than the migraines (course I didnt have a migraine at the time, so that was easy to say) When I do have one, I'd just as soon chop my head off and be done with it! ANYWAY,,, Do some googling on Topamax and watch for the side effects. I got really bad sores in my mouth and couldn't eat. (which is one of the few pleasures I enjoy in life!) It will also make soda taste like crap so if you are a big soda drinker that will stop. I quit taking it about a month an a half ago and still don't drink soda. (which is a good thing)

There are many side effects to Topamax but if you can handle them it is supposed to work wonders. Just don't increase too fast. I had trouble talking in complete sentences, couldn't focus and felt like I was in a fog most of the time. I also had joint pain and nausea....

Sorry, not trying to scare you... just do some research on it and if the side effects get too bad, call your neurolorgist asap. They will have you cut back a little and try again.

Tracy

---

Diagnosed UC october 2004
Asacol 3x3 daily
tried Rowasa enemas (hated them...burned like crazy)
Ccurrently in remission.... no blood or D...

Sleep Apnea
bulging disc in lower back causing me tons of pain from car accident in July
currently in PT for back... not helping.. (2x week)
Seeing new Chiro now, Hope to get some relief
DDD L4-S1
right hip 1 inch higher than left (think me standing on the brake during accident caused this)
left shoulder lower than right

Glucosamine for pain in back (doc said try this in addition)
TENS unit for home... seems to help some when I am standing for long periods of time
Facet injections 16 (8 on each side) didn't help)
Lumbar Medial nerve branch injections (didn't help)
Radio Frequency ablation on right side 12/7/05 (still waiting on outcome)
Zonegran (nerve pain) for back

axert (migraine abortive)
Imitrex for migraines (injections only work)
Nortriptyline 25 mg at bedtime as migraine abortive
Amitryptiline 50 mg at bedtime for sleep


paxil
xanex as needed for "those days!"

[coquitlam55]

Hi Sarah,

Ditto to what Tracy said, beware of the side effects. Not everyone suffers them. I had similar ones to Tracy but three months later I'm fine.

I increased my dose too quickly. I cut it back and started 1/2 tablet increase at a time and didn't increase until the side effects had stopped completely. Now when I increase I do so by 1/2 tablet and again don't increase again until the side effects stop. They usually only affect me for a week.

I find the emotional side effects severe so I take an anti depressant. If you feel a little nuts, it's the Topamax. Muscle pain as well. Nausea helps with weight loss.

I'll bump the Topamax thread if I can find it. There's a long one with other people's experiences. I haven't found others that have had severe side effects like Tracy and I.

Tracy - have you tried Perrier or Club Soda, I now drink that instead of Soda. I also crave Sea Food. Go figure.

---

Nicky

[purplegdaisy]

Nicky,

[septemberrein]

Thank you for your replies! I guess I just wanted to see what others expirienced with topamax. After reading the hand out from the nurse I'm questioning why my doc. put me on this. The side affects listed are things I'm already complaining of.. why would I want to make them worse? Anyway... thanks again!

Sarah

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^{"And think not that you can guide the course of love, for love, if it finds you worthy, shall guide your course" ~~Gibran (The Prophet)}

[tymaboy]

Most meds. that the Dr. has had me tried has had alot of side effects. It really doesnt matter what the name of the med is it will have side effects it is just the matter of after the side effects will it be worth it or not? So far my experience with the Topamax it has been, cuz now I can function again & do things with my family again. Don't increase them too fast or it will be too imbarable. I wait 2 weeks before I up my doses, longer if I feel the need.

[lu23cie]

Hi Sarah,
At first, Topamax was effective but not at all now. My sister has been using it for a year and feels relief.
Side effects ? Both my sister and I lost weight, without gaining it back, which was positive. At first, tingling sensations in hands and feet which is so odd but my doc had warned me so it was o.k.. My mood actually improved.
I also have some difficulty finding my words since I've been taking it at higher doses (200mg).
The side effects subsided after 3 weeks and when I forget a dose, I feel a bit out of sorts.
Topamax is commercialized by Ortho McNeil and you can find many clinical studies on the product, often with very small groups of patients or without a placebo control. Also many of the studies have not been published in reputable medical journals. It has also been the subject of 2 FDA drug alerts, FDA being the USA's pharmaceutical watch dog and an alert emitted when an unforseen severe adverse effect is observed.
Thank God I trust my doc.
Good luck Sarah.
Rabbit

[septemberrein]

Thank you Rabbit... It's funny you should mention tingling.. last night I had tingling and numbness in my lips... kind of freaked me out but then figured maybe it was the topamax. thanks again!

Sarah

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^{"And think not that you can guide the course of love, for love, if it finds you worthy, shall guide your course" ~~Gibran (The Prophet)}

[coquitlam55]

Hey Sarah and Rabbit,

Tingling in your extremities is a result of low potassium so says my neurologist. Try eating a banana or any other fruit or vegetable high in potassium. Otherwise try a supplement.

If you start forgetting words, try drinking a Perrier / Club Soda or two. I believe it is a result in low sodium bicarbonate. I just know when it gets really bad it works to fix it.

Just a few tricks I've learned.

 

---

Nicky

[wenmarie]

i have been on topamax for 4 weeks and have only had one bad migrane.  I am up to 100 mg.  I have tingling and feel doped up alot of the time but thie side effects are gettig better.  The problem I am having is with my mood I am having the worst bout of depression I have ever experienced in my life.  I am also experiencing uncontrollable anxiety.  My ativan does nothing.  I see my doc in two days.   Has any one else had this?

[coquitlam55]

Hi wenmarie,

Unfortunately depression and anxiety are a side effect. It does get better eventually. If you're not on an anti-depressant I highly recommend it. It makes it much better. Effexor is apparently a good one for chronic pain and as an anti-depressant.

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Nicky

[SPEEDSNEED]

TOPOMAX INFORMATION!

[Mary-Anne]

I have a thread on topamax further down the list - I go to the doctor today as it is the two week follow up appt, I've been on 50mg for this entire week. I feel fine, but I've had this dull headache all this week, but then again, life has been coming at me hard, my f-i-l passed away this week - the police notified us of finding his body in his apartment (we couldn't get through to him on the phone, his neighbors hadn't seen him...) so hubby was gone to his mother and I was here with the kids, so I can't count anything I feel right now as normal.
I've done research on topamax, sometimes I guess if we can get through the side effects, we have to decide if the the benefits outweigh the negatives. I know 50 is still low and he will increase it probably to 75 or 100, but he said he was doing it slowly, so we shall see. Like I wrote, this hasn't been a normal week for me, so I don't know what he'll want or what to expect.
I have no more migraine medication, and from my understanding, this med is prevention, but it doesn't get rid of them, so I need to get refills, right? This will be fun when I get to convince him I am not a junkie, I just know what works for a migraine with me. My doc is just adament against anything beyond motrin or tylenol, he'll put you on depakote or bp meds in a heartbeat, but nothing beyond that, just deal, I must be hunting for a fix...that's why a bottle of 20 t3 from my dentist a ways back still sits in cupboard...(I hate that stuff, gives me heartburn, but it does take care of tooth pain).
Anyway, Im off to get ready for the doc visit!

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Blessings, Mary-Anne
"Even though I'm walking through the valley of the shadow, I will hold tight to the Hand of Him whose love will comfort me, and when all hope is gone and I've been wounded in the battle, He is all the strength that I will ever need, He will carry me."


dx: lupus 2004, sjogrens 2005
RLS, anxiety, IBS, migraines

Meds: Plaquenil, Zelnorm, Seroquel, Klonopin, Ultram, Flexeril, Zomig, Topamax

[tysmyboo]

I have been on Topamax, this is the 3rd time now... the only reason I have been off of it is loss of insurance...I am up to 400mg. I love it, it is the ONLY thing that has managed my migraines.

I would sell everything I own (except my dog) to stay on it to keep everything in check. As far as side effects, I occasionally have "pins and needles" and a small twitch in my left cheek...but in exchange for debilitating migraines,...I would gladly trade them in any day.

For those who don't like it, FINE...we are all entitled to our own opinion and I know everything doesn't work for everyone....I just want to share with those who are interested:

I think that there are combinations of things that work differently and mine was Topamax, Wellbutrin and Inderal....and it took forever to make this work (as far as dosage and combination)....but the right doctor, the right medications and educating yourself is the best way to get there....

Now, I still struggle and have bad spells. Right now I am trying to get back to "good" since I haven't had insurance for 3 months and trying to get back on track...

Any questions...feel free to ask!

Sara

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Sara-Migraine/Headache Forum Moderator

 

Thanks for Visiting HealingWell.com

[ted]

I was on Topamax but had bad side effects. No taste in mouth. bad tingling in hands and in face. memory loss. Have headaches for 5yrs now daily and seen several doctors with no help. migraines meds don't work. allergara -d worked for 2 months then stopped. currently on different meds which don't work.

[Mary-Anne]

hi there - i am at the 50mg dose and it seems to be working, my pcm said if i need to go higher because migraines seem to come through, higher than 100mg, he will send me to a neurologist, alrighty then.
so far i've experienced the tingling in my hands, feet and face, and constipation (lovely when you have ibs already). I had what i thought was going to become a migraine, took my zomig and 1 hydrocodone, slept for one hour and it was gone, never got rid of a migraine like that before.
not only that, but the last two weeks have been out of the ordinary. my f-i-l died suddenly of a massive heart attack and we got the news in the middle of the night and my hubby had to drive up to ny for his mom and then to PR for the funeral and such... it's been stressful to say the least. i thought the doc wouldn't want to see me in light of everything, but in light of everything that i wasn't down with a migraine is good, so i'll take that.
i think the mini migraine might have been one, or maybe needing my allergy meds, which i've begun again, tis the season, i'm just glad it went away.
i have terrible dry mouth, but that also comes with the lupus and stuff and the other meds i have to take, right now my med of choice is those vitamin c candies, they taste good and maybe they are helping and i am not swallowing yet another pill for which i am grateful.
i'll just go day by day with this and see how it goes, so far, i am thankful it seems to be working and at a low dose AND i am back to what i weighed before chirstmas THAT is nice!

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Blessings, Mary-Anne
"Even though I'm walking through the valley of the shadow, I will hold tight to the Hand of Him whose love will comfort me, and when all hope is gone and I've been wounded in the battle, He is all the strength that I will ever need, He will carry me."


dx: lupus 2004, sjogrens 2005
RLS, anxiety, IBS, migraines

Meds: Plaquenil, Zelnorm, Seroquel, Klonopin, Ultram, Flexeril, Zomig, Topamax

[Mary-Anne]

I have to question what I last wrote. Yes, stuff has been going on in my family and I thought that resonsible for the other things I was feeling, BUT, I deal with RLS and it has been out of this world and the only thing I can attribute it to is the topamax, and my anxiety is getting out of control and that's the thing I want calm.
Two nights ago, the RLS was so bad, I would have almost preferred a migraine.
Guess I am going back to the doctor again, and he'll refer me to a neurologist. Honestly, I'd rather just be treated for when the migraine hits, than more pills to add to my daily cocktails.
Anyone have RLS and feel funny with these meds? I don't believe that I can wait and see if this goes away with time, I'll be hooked on some other drug instead just to deal with my legs that make me feel like I cam going out of my mind.

---

Blessings, Mary-Anne
"Even though I'm walking through the valley of the shadow, I will hold tight to the Hand of Him whose love will comfort me, and when all hope is gone and I've been wounded in the battle, He is all the strength that I will ever need, He will carry me."


dx: lupus 2004, sjogrens 2005
RLS, anxiety, IBS, migraines

Meds: Plaquenil, Zelnorm, Seroquel, Klonopin, Ultram, Flexeril, Zomig, Topamax

[poniigurl]

I had tears fall from my eyes when I read these posts. I must thank all of you before I begin. So, thank you. I'm a 33 year old woman (obviously by my nick name) who has suffered with migraines my entire life. Well, most of what I can remeber of it. The first time I was treated for it was when I was 18 and had to go to the ER for a shot. I slept for 3 days.

I have been through the gammit of drugs, pain meds, shots, blood pressure pills, you name it, I have been on it. Unless they have JUST come out with it. I have tried it. Then, they put me on Topomax back in July. I still had migraines but they weren't as bad. Ok... cool. Then I got to where I only had them at "that time" of the month. Not a problem, my neuro treated me for that. So they weren't as bad. I have to mention, back then I was as randy as a stallion with a mare in heat. "I want some more" was all I ever said. Now... I'm a month a half away from my wedding date. And, well, I can't get it up, so-to-speak. When I do engage in premarital play... I cannot play to the utmost of my ability, whereas, previously I was blessed with the ability to play and play and play until the cows came home. I miss that. Desperately. So does my fiance.

Recently, The docs believe I had a stroke. I said "what?" We think you had a stroke". Although, there is no permanent damage and nothing shows up on the MRI, although there was something on the CAT scan. Why they did a spinal tap, I don't know. But, they had to do a blood patch to repair it. My neuro up'd my dosage of Topomax (which although I have to wear glasses now has been amazing) to 100 mg a day, Amitryptiline 50mg, Lyrica 50mg. I have Relpax for when I do get a break through migraine (those are amazing, but only if you take it with Ibuprofen 600mg and then follow in an hour with another Relpax), I try not to take any more narcotics or pain pills or what not.

I'm confused all the time now (just up'd the dosage), no sex drive, iritable, dizzy when I stand up. I stuttered really badly with the "stroke" episode thing... took over a week to come off from that. I have to concentrate on my words. They gave me tons of steroids in injections and by step down packs. I gained weight. I haven't really changed my eating habits. It's incredibly depressing. But, I see a bit of light at the end of the tunnel reading these posts. I'm not alone. Thank you. This too shall pass. Maybe it will all straighten out by the time I'm to slip into my wedding dress. And I better SLIP into it and not have to be POURED into it.

I should also mention that I have a HUGE list of foods that are triggers for migraine sufferers and found that it is pretty accurate.

PoniiGurl