Prophylactics: Any Success Stories?

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Prophylactics: Any Success Stories?

Post  fattoush on Sat Jan 09, 2010 5:56 am

I've been on Amitriptyline 50 mgs one month. I still had 3 to 4 combination tension headaches/migraines a week. I also gained 5 to 6 lbs in that one month. I am giving up. I had tried Inderal (Propanolol). It would only work at doses 80 mgs and higher. I could not handle it. I was not able to walk anymore without being short of breath. I tried Depakote, but I needed to be on 750 mgs. I was eating like an ogre and losing a lot of hair, but, I must say, this one looked like it might have worked.
I am now going to try Topamax. I am worried as I had tried it before. While it worked on my headaches, it made me jittery, anxious, depressed, even suicidal at a high dose. I am going to stick to a low dose and watch myself carefully. Also, this time, I'm on Lithium.
I'd love to hear other people's stories.

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any success stories?

Post  Chinookgrl on Sat Jan 09, 2010 8:54 am

I don't know if I have had any "success stories" but how about some temporary relief stories.

I have just come off of Epival which is an anti-seizure -did really well on that one for 3 years it just became a ineffective after long term use. I had few side effects with this and good success. Cut migraines in half. I tapered off and am now just up to 100 mg of Topomax. (Anti-seizures seem to be the only class of meds that work for me after trying every other preventative)

The Topomax made me very nervous as well, you hear all the awful stories and it isn't tolerated well by many. For myself I went very slowly. Started at 15mg titrating up by 15 mg a week and sometimes every two weeks depending how I was at that dose. I found at the higher doses I went a little slower taking two weeks to settle before adding in another 15mg.

It seems OK I have been at the 100mg for only two days now, headaches better for sure, it is actually significant. Side effects, some tingling in feet, I did have some forgetfulness but that seems to be settling out, loss of appetite (*I am using food supplements for nutrition) thirsty all the time, some fatigue, weight loss. All of these things seem to be balancing out a bit and were moderate for me. As far as depression and mood troubles only some short temperedness when I initially introduced the drug - this quickly went away.

I am hoping that now at the 100mg dose things will settle down even more and it will keep migraines at bay. So far so good. For me the balance of the side effects vs the migraines is worth it with this particular medication. I hope you find something that works for you, maybe ask your doc about the Epival ?
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Re: Prophylactics Success Stories

Post  fattoush on Sat Jan 09, 2010 9:57 am

I never heard of Epival. I am about to start on Topamax myself. Your side effects seem tolerable. Can I ask why you did not try and stay for a month at only 50 mgs of Topamax? I hear that some people have success at 50 mgs.


Last edited by fattoush on Sat Jan 09, 2010 11:56 pm; edited 1 time in total (Reason for editing : spello)

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Re: Prophylactics: Any Success Stories?

Post  LG on Sat Jan 09, 2010 10:38 am

Hi,

My topamax stories are all over the place on the forum. I just started two 1/2 months ago.
I did not stop at 50mgs and am happy I didn't because 100mgs works pretty decently for me.
First off, do your research. Type it into google and read everything you can about topamax.

It makes you dumb as a rock for a while. It got better for me, though a few people
say it doesn't get better for them. I had problems counting money, I'd get to the kitchen and
forget even walking there. I took away my own drivers license because I can't concentrate on
it. I say door instead of counter, floor instead of phone..ect. Silly stuff.

There are countless side effects. I tingle everywhere. My hands, feet and face tingle. It gets
a lot worse when I get angry. This has not gone away, however it has gotten better with time.
I also get very bad leg cramps but they are not constant, and not even frequent. My menstrual
cycle is also very screwed up, although it is a rare side effect that does not happen to everyone.
If you are female and on birth control talk to your doctor as it may make your BC less effective.

Weight loss is prominent and happens to a lot of people. I myself have lost a conciderable amount
of weight. I have no appetite and forget to eat most of the time. I cannot drink beer or soda
anymore. It tastes bad. Most things taste kind of funny now, and I have no food cravings at
all anymore. For me, its a very good thing being I could stand to loose a little bit. For others,
its not such a good thing.

My moods have stabilized. I do not "sweat the little things." Be careful though, and have
someone close to you watch your moods. Just because I had a positive effect does not mean
you will, too. I have heard horror stories where people have went off the deep end and never
even noticed. PLEASE make sure that someone pays attention to your moods, as this drug is
one of those that can cause suicidal thoughts and depression.

My migraines immediately got less severe. They went from an 8-9 out of 10 on the pain scale
to a 5-6. The frequency didn't change until about two months into taking the drug. I dropped
from about 4 migraines a week to 3. Good stuff. I am on generic topapax, also known as
topiramate. When I got my refill, they gave me generic mylan instead of generic teva (two
different manufacturers of generic). Two days after taking the generic mylan topamax
I started getting PAINFUL horrible migraines again. I am in the process of getting my teva
topiramate again.

Be wary of your refills, and know that if one topiramate isn't working there are others to try.
Also, as new studies are emerging, it may be worth it to take the brand topamax. You will
more than likely have better success with it. I'm broke and cannot afford it at the moment,
but will keep you posted when I switch over.

Good luck, and research research research. Learn how this drug effects your brain. Its good stuff.
It's a serious drug and you want to know everything about it before taking it. PM me
if you want to know more.
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success stories

Post  charmed quark on Sat Jan 09, 2010 1:32 pm

I tried at least 20 drugs.

Elavil/amitriptyline was the one that worked for me. It cut my migraines down 50%. Side effects for me was grogginess during the day, having trouble driving at night ( made me see halos around lights) and constipation. But it was worth it for several years until the last side effect got out of hand.

Since then I've been using Marinol every evening and have reduced my migraines to 10% of what they were. Side effects are of short duration in the evening after I take it and include anxiety, sleepiness and the occasional munchies. Been on this for 6+ years and still working.

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Post  Chinookgrl on Sat Jan 09, 2010 7:22 pm

I agree, do your research and check it out, if you choose to go on Topamax just be aware of the side effects so you are not caught off guard. I find with my neuro anyways that she doesn't really fill me in she just writes the scrip. Also your question about not stopping at 50 mg. I guess we had a plan to go to 100mg and I just never stopped to question it (maybe I should have) My neuro did cite studies stating therapeutic doses at or above 100 mg seem to be most effective. It does seem to be quite effective so I am happy with this decision.

One thing previously not mentioned in these posts I have seen in the past is the increased risk of kidney stones. I was warned by my neuro about maintaining a high water intake. This effects a small portion of people but good to be aware of. I do hope you get some relief from it and you tolerate it well. Good luck to you.

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To ChinookGrl

Post  fattoush on Sun Jan 10, 2010 12:07 am

Thanks for reminding us of the kidney stones, it's a serious one. Also, I wanted to tell you. I looked up Epival. It is the same, or pracically the same, as Depakote. I tried Depakote. It would have been a good option because it also helps with mood for me, but the weight gain on it was unbearable. It's also why I gave up Elavil/Amitripyline. I just can't stand gaining 3 kgs/7 lbs a month.
As for researching Topamax, I have done so much of that. In fact, I've experienced it first hand. Recent research shows that it can work at 50 mgs, even at as little as 25 mgs, for some people. If you're fine with the side effects of the 100 mgs, by all means, don't back track. I was a total mess mentally at 100 mgs. So, I intend to titrate up very slowly, and try sticking it out at 50 mgs for a month.

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Re: Prophylactics: Any Success Stories?

Post  AuntieBubbs on Sun Jan 10, 2010 12:15 am

Topomax has been the best preventative for me. I'm on 100mg a day. I've tried calcium channel blockers, beta blockers, and low doses of Cymbalta.
It doesn't affect me adversely. I do get tingling, weight loss, and some drowsiness. I have some forgetfulness, but its not extreme. None of these effect my day to day functionality. I hate the tingling and the fatigue, but the positive effect on my migraines is more than worth it.
And I can definitely stand to lose more weight. Smile
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To AuntiBubbs

Post  fattoush on Sun Jan 10, 2010 12:18 am

Do you take it all at once? AM or PM? Thanks.

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To Iovegia: Success Stories

Post  fattoush on Sun Jan 10, 2010 12:30 am

Dear - I'm glad it's working for you. I have researched it to the bone, believe me. I wanted real life experiences because I took it. I took it for some six months. I'll never forget those six months of a fantasy life without migraine at 100 mgs. The side effects on me, however, were horrible. I lived in Philadelphia at the time. Topamax had just been approved. I did not have a sensitive neuro at one of the best headache clinics in America. He paid no attention to what I was saying. It took his nurse to realize that I was at risk of killing myself.
You see my side effects were not merely cognitive, they were mostly emotional. I was nervous, anxious, afraid, jittery, depressed, and by the time I reached 100 mgs, I was suicidal.
Now, you say why would she want to do it again? Well, I have been reading reliable sources that say that Topamax can work at very low doses as a migraine prophylactic. Therefore, I might luck out and avoid the bad side effects. Also, now I see a psychiatrist regularly. As you wisely suggested, my moods are followed. I am on medication too, and it is compatible with Topamax.
I'm planning not to go higher than 50 mgs. I can already say that this time, I have felt nothing at 25 mgs, where I've been for a week. Last time I tried to reintroduce Topamax and without the right psychiatric medications on board, even 25 mgs made me jittery.
Can I ask, how soon did it start working, when you say soon? A week? A month?

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Re: Prophylactics: Any Success Stories?

Post  LG on Sun Jan 10, 2010 1:56 am

The severity of my migraines decreased within a week of taking the topamax. More noticably
within a month. The frequency just started decreasing at a bit more than two months.

I did also notice the difference in severity at just 25mgs myself when I was tirating up. I believe
it was right when or as I was going up to 50mgs. I remember the pain dropping to about
a 5-7 most days from a 8-9. It was good, but if I can get better I would take it which is why
I continued tirating.

I'm really happy that you are making sure someone is monitoring your moods. I worry about
that myself and am constantly asking my family if i'm acting off kilter. It is good to have someone
who knows you to check up and make sure your acting normal especially on this drug. I know
I have changed, but my family and I feel it has been for the better. I hope you have the same
experience this time around, if not on topamax, on another medication better suited for your
needs. Smile
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Re: Prophylactics: Any Success Stories

Post  fattoush on Sun Jan 10, 2010 3:31 am

By the way, a question to all of you for whom Topamax is working. Did it help prevent all headaches or only migraines? Because, frankly, I can't tell anymore, what with all the rebound headaches I have, whether it is migraine, tension, or rebound...

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Re: Prophylactics: Any Success Stories?

Post  TeriRobert on Sun Jan 10, 2010 11:17 am

Topamax was an absolute disaster for me, but I know people for whom it works very well. I went to countless neurologists and got no help. When I finally discovered that neurologists aren't necessarily Migraine specialists, but there ARE Migraine specialists out there, I was finally able to get some help.

I was averaging five keep-me-in-bed-all-day-in-hell Migraines a week at the time. Now, thanks to working with a specialist and my preventive regimen, I usually get two or even three months between my Migraines, and they're actually treatable.

It's a bit difficult to lay out my exact regimen because I take some things that we think are probably helpful, but I take them for other conditions. Anyway...
  • Effexor XR
  • verapamil
  • coenzyme Q10
  • fish oil capsules
  • zonisamide (Zonegran)
  • acetazolamde (Diamox)

Good luck!
Teri

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Re: Prophylactics: Any Success Stories?

Post  pen on Sun Jan 10, 2010 1:46 pm

I have been seeing a neuro who specializes in headache. He is very nice but I still dont feel inclined to try any more preventatives.
Until they can come up with something with less side effects, which apparently due to my fibro, I get all of.
muddling through....not very succesfully.

Not even heard of some of the drugs mentioned here. Different name to UK or maybe not available...

P

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dear pen

Post  dcook60 on Sun Jan 10, 2010 2:37 pm

i'm right there with you; not willing to try any more preventives. with our fibromyalgia, this is one reason why we have so much trouble tolerating things that other people breeze through.

a good neuro is a fine thing. i'm going to try another one soon, but won't know until the first appt. if he knows any more than i do! dianne
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Post  Chinookgrl on Sun Jan 10, 2010 3:25 pm

I am lucky enough to have found a neuro who is within a group who specializes in migraine. There is a migraine clinic here in the city with a small group of docs and nurses, ot help, nutritionists all involved with this clinic. Ask around your area I know I had to do some digging and asking in mine to find out about it.
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Re: Prophylactics: Any Success Stories?

Post  milo on Mon Jan 11, 2010 10:32 pm

My headache specialist has me on a combo of supplements. This includes:

Magnesium 550mg
Vitamin B2 (Riboflavin) 400mg
Coenzyme Q10 240mg
Butterbur extract 150mg

Each of these are known to work successfully as preventatives on their own. The combo is one out of the Mayo clinic that is showing better results then any one of the pharmaceudical studies.

The combo needs about two months to be most effective.

You can purchase all of them in one under the name migravent. I don't take migravent, but have to take 14 different caps/pills a day to get all that is in them. I found the Migravent to be too expensive.

I also have 5HTP added to mine as it has also shown some good success.

Unfortunately, I can't tell you how well it's working because I've only been on it one month and I am also on botox injections every eight weeks.

I intend to come off the botox in about three months to see if this regime is working.

I recommend everyone check this out, as it is what the headache elite are suggesting.

Best part is....no side effects...unlike the pharmaceudicals....with the same or better effectiveness.
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Re: Prophylactics: Any Success Stories?

Post  theresae on Tue Jan 12, 2010 2:35 am

hi i am on amitriptyline 50mgs daily and also a beta blocker called propanolol, 40mg twice daily and i am havin reasonable success with them, but i have been on them for a while now, so i would say give it more time,

when i started the Ami, i took it over a peroid of 6-9 months increasing the dose to 75mg, then after a nasty bout of M the gp prescribed propanolol, 40mg in the morning and 40mg late afternoon, then the Ami about 2 hours b4 bedtime,

about a month ago i reduced the Ami to 50mgs daily, and will see if this changes anything, but i do expect to be on these preventitives for as long as i can maybe even years, iam not saying they arent without their side effects, tiredness and weight gain being the biggest problems, but it is worth it compared to havin migraine 3/4 days a week and general head pain on the other 3 days of the week,
so please give the preventives more time to work and for you to find the dose that is right for you,
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To Milo

Post  fattoush on Tue Jan 12, 2010 9:14 am

I have not found Butterbur anywhere! And I searched in many countries.

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Re: Prophylactics: Any Success Stories?

Post  milo on Tue Jan 12, 2010 10:09 am

Swanson's Health Products shipped it to me from the states....and for cheap. Did you find Migravent? Maybe that will be easier to find, but more expensive?
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Re: Prophylactics: Any Success Stories?

Post  alli on Tue Jan 12, 2010 10:35 am

I've been on just about every preventative and am having the best control with Effexor XR, Lyrica and Neurontin. I have Trigeminal Neuralgia and Fibromyalgia in addition to migraines so I have to try to help all of them. I am still having evening migraines but the really bad ones are a week or so apart. Much better than usual. Most of the rest of the pain is reduced. It doesn't go away but it is bearable.

My biggest problems are weight gain and tiredness. I've reverted to being a toddler. I take a 2 hour nap everyday after my afternoon dose.

Alli
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Re: Prophylactics: Any Success Stories?

Post  estre004 on Tue Jan 12, 2010 2:14 pm

I'm with Pen and dcook, and I don't have fribromyalgia. I'm done with preventatives for now. The success rate just isn't high enough to put your body through all that medication. As long as my abortives work, they can be my preventatives. It enables me to take a lot less medication with the same results as a "successful" preventative which most likely involves taking large quantities on a daily basis. No thanks, especially when most of them are not successful anyway.

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to estre

Post  fattoush on Tue Jan 12, 2010 11:03 pm

I think it's important we all do what works for us. For me, abortives meant something pretty harsh every three hours or so over 24 hours... I am hoping to hear, and obviously there are out there, success stories.

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To Milo

Post  fattoush on Tue Jan 12, 2010 11:05 pm

Where would I find Migravent? Do you know the manufacturer? I travel regularly to the States, where my children live. I am only away temporarily. Believe me, I had tried the Butterbur there!

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Re: Prophylactics: Any Success Stories?

Post  LG on Tue Jan 12, 2010 11:48 pm

To answer your AM PM question, I do split doses. I take 50 in the morning 50 at night. When I was
tirating though, here was the schedule my doc gave me to follow. (sorry in advance for possible
stupidity. I did switch to brand, I feel it is stronger and it is my first days I am a tad dopier again LOL)

First week
25mg at PM
Second Week
25mg at AM
25mg at PM
Third Week
25mg at AM
50mg at PM
Fourth Week
50mg at AM
50mg at PM

For the third and fourth week I split it a little more than that. For the third week I would take
one 25mg pill at 5pm and one at 10pm because it lessened the side effects. For the fourth
week I would take one pill at 9amish, one at 2pm, one at 5pm and another at 10pm.

Now I get 50mg pills at take them strictly morning and night unless I miss my morning. It
occasionally happens so I take them both at night. I try and fall asleep really fast to miss the
side effects.

You also asked about all types of headaches. I used to get regular headaches occasionally too,
but they are long gone. I only get migraine type headaches now. They may be low grade, but
they have the same light/smell/sound sensitivity and sometimes nausea that clues me into knowing
they are definitely migraines.

Within a day of taking the brand topamax I am already feeling better. Obviously I cannot rely on
just one days worth of data, but I have hope. Very Happy I cannot help but think that the other topamax
had fillers in it that may have triggered more M but I have no prior food trigs. I guess I'll never
know the cause just the results, but if they are good I will settle for that for sure!

I will keep all posted on what happens as I have switched from generic to brand. Topamax sure
seems to be a hot topic around here, and I will lend whatever knowledge I can. If it helps, it helps!
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