Prophylactics: Any Success Stories?

http://www.migravent.com/

All four of the ingredients in migravent have been studied and have found efficacy is equal to or higher then that of the medication/pharmaceudical prophylactics.

On the dose of the four ingrediants, almost every user saw improvement and I think between 50 and 60 % saw a 50% decrease in migraines or more. Users also report a huge decrease in how painful their migraine attacks are.

One thing I have really noticed over the month plus I have been on this combo is that if I miss doses I get really sore restless legs.

I think my legs are sore as I have been attempting to run again despite my head and they are sore from running.

I think the supplements are helping keep that pain away and that I feel what my legs would actually feel like if I skip too many doses. It's like the combo is a very effective analgesic/ anti-inflam.

Hope that makes sense...my head is pretty bad right now.

I think what you're taking will work. I was not able to go higher than 40 mg total daily of propanolol (Inderal). I have low blood pressure to start with, and when I took 80, I was short of breath all the time. As for the amitryptiline, I admire your attitude. I know it does work, worked for my cousin. I was gaining a pound a week on just 50 mgs a day. I was ravenous. I could not accept that. I stuck it for two months though, and still saw no difference in my headaches. Maybe it has to be the ami and the propanolol. My cousin does do both.
Migraines run in my family.....

Twelve days on Topamax, of which 5 on 50 mgs (first days at 25). Noticeable decrease in frequency and severity. Today, I woke up with a pretty bad one though. In fact, this writing on the computer is hurting. I think it's because I went last night to see Avatar at the movies in 3D. I should have known. My friend insisted but I should have said No. That's a trigger for me. Too much stimulation bombarding my every sense.

yeah i would love to take my boys to see avatar, but i know there is no way my eyes will tolerate the colours and the fast moving screen, so will give it a miss, even the trailers of it irrate my eyes.

fattoush wrote: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?

Oh boy....I always feel like the Topomax Basher, BUT.....I truely think that there are just those people who that drug can have AWFUL AWFUL side effects on. I was one, and like you, I got so deseperate that I tried a second time. It was no different. Please be careful. The cognitive and emotional turmoil of that drug was something I will never forget and never do again.

I am so glad that many people are getting relief from it, but I think some people can not tolerate it.
Please be careful if you are trying it again.

I was on 25mg of Topamax for 2 weeks before going to 50 mg, then 2 more weeks weeks before going to 75mg, now at 100mg. The schedule I am on calls for increases of 25mg every 2 weeks right up to 400mg daily. Of couse it is up to me to stay at any dose I want if the headaches are under control.

I have to say these have been the best 6 migraine/headache weeks I have had in the last several years. Since I started, I have not had a full blown migraine. I have had headaches that started about as often as my migraines did (3 or 4 a week), in the same way, at the same times, caused by the same triggers more or less, the difference is that they go away easily and have not progressed to the unbearable stage and have not lasted more than a few hours (as opposed to 12-14).

The only side effect I can notice has been some tingling in my feet, maybe my hands. Will consult with the neuro tomorrow to see if potassium is recommended. I have also just switched from generic to brand name a few days ago. Too soon to say if there is a difference.

I am lucky in that I tend not to get many side effects from most medications.

In the six weeks since I started Topamax, I noticed no improvement yet.... I had so much hope. I am dying here. I barely get one day a week with no headache. Home is beginning to look like a pigsty.
Granted, it's now only been 9 days on the target dose of 100 mgs because of the slow tapering.
What on earth am I supposed to do?
Is there still hope?
I know someone, sorry, forgive me with this head I forgot who it was, said it took them months.... Honestly how can a medicine be worth it if it takes months to work?
Can people all tell me if Topamax worked for them, when it started working?

Wait 2-3 months after being on your target dose (100mgs) to see a difference. It is the only way for any preventative. All preventatives take time unfortunately and you must be patient. I'm sorry. Some people do notice immediate difference but doctors do agree that you must wait the time to see if the drug is working unless the side effects deter you from using it.

I did notice an immediate difference in severity of my migraines but it took 3 months for me to see a difference in frequency. Had I not been keeping track of pain scale every day I would not have noticed the difference in severity at all. It wasn't a huge difference, but any difference is good difference to me.

Sorry your having a tough time, I hope you feel better soon. Don't worry about your house...mine is a wreck too. Try not to stress about it because it'll just make your head worse. You can't do it because you just can't, and when you feel better you will. It's not your fault, and it isn't who you are normally..it's the disorder you live with that makes you like this.

Thanks, Iovegia. The problem is this "don't use narcs" business. To lie there and take the pain is too much since any OTC med is useless for me.
I'd always heard 6-8 weeks. I hope it will be closer to that.

By the way, do you notice a correlation between the weather and your headaches? Does Topamax help with those too?

I'm investigating it now. I have had so far 3 storms that have triggered migraines on topamax, but the last one was in line with my lady time as well so I don't want to count it for sure. I'd like to have a few more times to back it up. They are terrible horrible migraines.

Why no narcotics!?! I still use mine! I couldn't live without rescue meds. Triptans don't work for me, I'd be climbing up the walls going nuts in pain all the time. Geez man, you've got my sympathies.

Narcotics don't always work for me, especially during the time of the month or during storms but the other couple times a week they do. I go crazy and want to gauge my eye out with sharp objects when I'm in that much pain, I can't imagine not being medicated for long periods of time like that. Talk to your neuro or go to a pain management specialist. Ouch.

My Neuro believes they cause rebound headaches and increase the time before the benefit of Topamax kick in. I don't know how things could be worse....
I believe there's definitely a rapport between weather and migraines, especially stormy weather and low barometric pressure.

Well, I just talked to my neuro who has me on Topamax for prophylaxis. In the meantime, in the past few weeks, headache or not, I had done lots of research on all sorts of headaches. Us migraineurs don't just get migraine headaches. We're vulnerable to all sorts of headaches, tension headaches, weather headaches, etc... Turns out when a drug is approved as a migraine prophylaxis, well it only helps one-sided, nausea-accompanied, light-sensitive, you know it... migraine and not any other headache however awful they may be.
My neuro says he does believe indeed that Topamax would be of no use to me in anything but migraines. It's not a general head-pain-preventative.
I said, then what is? Is there something?
He thinks that combining both Topamax with Tricyclics should get me covered?
Oh Dear God! Please!

No more preventatives for me neither. No idea what long time effects are and none of them worked good enough to gamble on. I will try something new only if it I hear good results from a lot of people-- not just a few here and there.

I can only speak for myself. Before starting Topamax I had given up on everything including any form of pain relief or pain killer including narcotics, triptans. I had been using a beta blocker as a preventative that was sort of working but had to change to a different one that had no effect on my migraines and I was getting one almost every day.

Since beginning Topamax at the beginning of December my life has changed. I am kicking myself for refusing to try it for 5 years ago when my neuro first told me about it!!!. I started on the generic form (Mylan) for the first 5 weeks and have been on the brand name drug for about 3 weeks. The brand name drug definitely works better for me and this has been reported by many other people as well.

The only side effect I have noticed is some tingling which goes away easily by eating foods high in potassium like bananas, dried apricots, raisins, etc. I have also noticed a rapid heart beat for a few hours too. I have not had any mood or mental disturbances, weight loss, etc. I started at 25 mg and increased by 25 mg every 2 weeks. I am now at 125mg and will likely stay at this dose.

My neuro says that patients benefit most at either 125 or 350 to 400 mg. Some earlier studies recommended stopping at 200mg if it wasn't working at that dose. His guidelines go right to 400mg. Always increasing by only 25mg at a time separated by 2 weeks. It takes almost 6 months to titrate up to the maximum dose of 400mg.

I split my dose between morning and evening although my neuro says there is no need to, he says it can be taken before bed in a single dose.

I was getting headaches that began like my migraines some of them waking me in the middle of the night, but they went away after a few hours (something my migraines never did). We just had a horrible storm and the pressure dropped as low as it can and I felt like for sure I would get a migraine and I didn't.

My neuro said that for some unknown reason people taking beta blockers need less Topamax. So while the beta blocker I am on is not helping my migraines, it might be helping with the Topamax. For me Topamax has been a miracle drug. I also take B2, Magnesium and CoeQ10. I have been taking this for years even when I have had uncontrolled migraines, but I am still taking it too. BTW my neuro is the head of the university headache clinic in the city I live in and told me once that I was the most difficult migraine case he had ever treated. I sure hope this new life of mine lasts.

Baadawg - I hope the Topamax keeps working for you. That is definitely good news!

Can I ask, how much Beta Blocker are you taking and which one? Thank you. I was on Inderal. At 60 mgs, it did not do much. At 80 and above, it was helpful, but I noticed that I was getting short of breath on simple walks.

I was on 40 mg nadolol. I had tried atenolol before that but I hated it. I am on sotalol now because I have an irregular heart rhythm. If I didn't need the beta blocker I would be off it. I am used to the effects, but they can make you tired, give you weird dreams, disturb your sleep, etc.. What is helping my migraines is the Topamax not the sotalol.

I also do a lot of cardio exercise. About an hour every day. I used to think it made my migraines worse but then I found it probably helped my migraines, and if I was going to get a lot of migraines it wouldn't matter what I did or didn't do I would get them anyways so I did the exercise (like I always have my whole adult life). It has always made me feel better (until a migraine would make me feel like I wanted to die). But exercise wasn't why I was getting migraines so it was dumb to stop doing it (which I had tried).

When you take a beta blocker exercise can be difficult but your body will adapt over time if you keep at it. I stopped taking all pain killers and triptans and OTC etc. because I felt that if I was going to get a migraine everyday AND take all that stuff I would rather get a migraine every 2 or 3 days (usually but not always I would get a day or 2 off after a really bad unmedicated migraine) and get a day or 2 in between pain free and not on drugs. Plus I hated always thinking about what to take and when to take it and when to take another one at the first headache twinge.

Sometimes those twinges were headaches that lasted only a few hours and didn't become full blown migraines and went away. By not taking anything I became a little less fixated by my headaches although I was plenty fixated.

I guess by writing here I am still fixated even though I am not getting them. It's such a traumatic experience this migraine life we live. I never even got them until about 7 years ago at the age of 50.

Fattoush,

Based on all the reading I've done, the medical conferences I've been to, and the Migraine experts I've worked with over the years, please allow me to make a couple of comments here?

It looks as if you could have some Migraines that you don't realize ARE Migraines. For example, weather can be a huge Migraine trigger, but it's not known to bring on headaches. Also, Migraines aren't always one-sided. Nor does every Migraine attack have to include nausea, sensitivity to light, etc. You don't have to have the same sympms all the time.

As for preventives, the same medications used for Migraine prevention often DO work on other headaches such as chronic tension-type headache, etc.

I really don't like to contradict your doctor, but I hate to see you feeling so hopeless.

Teri

fattoush wrote:Well, I just talked to my neuro who has me on Topamax for prophylaxis. In the meantime, in the past few weeks, headache or not, I had done lots of research on all sorts of headaches. Us migraineurs don't just get migraine headaches. We're vulnerable to all sorts of headaches, tension headaches, weather headaches, etc... Turns out when a drug is approved as a migraine prophylaxis, well it only helps one-sided, nausea-accompanied, light-sensitive, you know it... migraine and not any other headache however awful they may be.
My neuro says he does believe indeed that Topamax would be of no use to me in anything but migraines. It's not a general head-pain-preventative.
I said, then what is? Is there something?
He thinks that combining both Topamax with Tricyclics should get me covered?
Oh Dear God! Please!

I kept asking my neuro if my headches were really migraines since I did not have most of the symptoms many people get. I don't get nausea (maybe 3 or 4 times), I am not sensitive to light or sound, mine started late in life, I am male, etc. Many of my headaches don't become full blown migraines, but I can and do get them every day. I have other things headache wise that are not "typical".

My neuro flat out told me that I had migraines and that it is not just one kind of headache. He did tell me that there are many treatments and many combinations and many different doses of the combinations and that what works for some does not work for others. A lot of it is trial and error. I refused some of the heavy duty preventatives and now it looks like I should have been a bit more open minded and maybe trusting (did I really just say that).

I'm am so happy for those of you who have success with Topamax. Honestly, not just happy, but jealous too.

My experience was horrendous...suicidal, mental breakdown to the point I was diagnosed bi-polar (at 47 with never having had any other symptoms!). I've posted about it before.

What I love about this site is it makes us aware of what can happen to different people on the same drugs. We can gather up the knowledge and make decisions based on us as individuals. Plus, be aware of side effects that aren't always told to us up front.

I was put on one, can't even remember, there have been so many, I know it starts with a K, that my neuro flat out told me "it may turn you into a b**ch". Whoa, that was blunt! And whoa, was he right!!! Even knowing that it was drug causing it didn't help me to control it. I went off it because I'd rather be in pain and have people love me, then drive everyone away!

Charlotte

Never had Topomax. Kidney stones and impaired kidney function meant I didnt want to risk it.
What have I missed.??
P

eh kidney stones. I've had em, and I'd gladly take them over these migraines.

Not saying its the choice for everyone, but thats my choice for me!

lovegia wrote:eh kidney stones. I've had em, and I'd gladly take them over these migraines.

Not saying its the choice for everyone, but thats my choice for me!

Cant disagree. At least they end. migraine just incessant.