question for topamax users

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question for topamax users

Post  lentils on Mon Mar 15, 2010 7:59 pm

I've been taking a low dose (started out with 15 mg, up to 50 mg) of topamax, since December. Although I have never been diagnosed as bi polar, I feel I may be, but I don't have huge mood swings and functioned ok, went to college, held down a job, raised kids, etc.

I think topamax is heightening my good and bad moods. I really like it when I'm feeling good. I've gone off my migraine diet, drank wine, eaten chocolate and it all seemed to be good. But when I do get a migraine I get it for a week, with no or moderate head pain, but extreme depression. I refer to the depression as the "brick on my head". It is not the depression like feeling sad or unhappy with my lot in life, it is more like little or no activity in my brain that makes it difficult to think at all. But this depression makes me lose interest in everything. This is the second episode since December.

I am thinking of stopping the topamax and hoping the migraines that I am used to return. Head pain that is high on the scale, but with a duration of only 24-48 hours, not 5 days, which is the current duration of this episode. I guess I can deal with the head pain, but I certainly can't afford to be on the sofa vegging out, not eating, sometimes not even taking fluids, for this long.

Topamax is the only drug I have right now. Nsaids and tramadol give me rebound headaches. Last year I used triptans too frequently and now they don't work at all, so I need to give them a rest.

If any of you have any thoughts I would appreciate hearing them.

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My time with Topamax

Post  TheBookworm411 on Mon Mar 15, 2010 8:22 pm

As I am sure others here can tell you Topamax is notorious for causing "brain fog". My friends call it the stupid pill. It does initially stop or lessen the migraines but you pay for it with difficulty thinking and doing things. I stopped doing tasks around my house and started making mistakes at work that didn't make sense.
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Re: question for topamax users

Post  LG on Mon Mar 15, 2010 9:04 pm

What other rescues have you tried? You might want to concider finding a good rescue med for you to kick around while you wean yourself off of this and find something else that works so you aren't in excruciating pain.

If you are having mood swings and you are at a low dose now and you feel this uncomfortable about it I'd talk to your doctor about discontinuing topamax. It is not good to sit on the couch and veg out and not eat or drink anything for a long period of time. It at least warrants a serious conversation with the doc if not a switch of meds. You can always give it another few weeks if you want but I sincerely think it isn't necessary. The side effects usually go away in 3 months and if you have been on it since December, you should have noticed them at least decrease in the beginning of this month. Still, I'm no doctor, just a topo user.

Best wishes to you and I hope you figure it out. Keep us posted!
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topamax

Post  lentils on Mon Mar 15, 2010 9:39 pm

The neuro says to increase the dose, I'm not at therapeutic dose yet, which is 100 mgs, but I'm scared. I've asked for DHE rescue, but he told me it raises blood pressure. I don't have any issues with high blood pressure. If I want anything else from the current neuro, I'm going to have to try and push him, he's not inclined to give me anything else. What other rescues are there besides triptans? I know some of you take stadol, I doubt I would get that from him.

I guess I'll taper down the topamax, stop completely for awhile and see if I return to my previous pattern of headaches. Then I can start topamax again and maybe ramp up to 100 mgs.

All this drama came about because my usual medications of botox and triptans stopped working. That is about all that this neuro offers. I'm going to the US in July (Arizona) and I can see a GP for some suggestions and scripts.

I'm going to try a headache clinic here in Australia and if I'm not satisfied I'll see a neuro in Philadelphia late in the year.

Since I'll be off everything I'll get some Butterbur sent from the US to try.

I would like to try DHE, it is a class of drug I have not tried yet.

I didn't really notice any of the topamax side effects that cause people to call it stupamax. I did leave pots on the stove and the oven on in the beginning, so I have to do a check before I go out.
Topamax actually caused me to gain weight in the beginning, because I had less of a restrictive diet
and I was not vomiting every week.

Thanks for your responses, this disease is always throwing curves. I just took some stemetil, it seems to be helping.

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Re: question for topamax users

Post  HeelerLady on Tue Mar 16, 2010 8:35 am

Lentils,

Are you sensitive to drug doses? You said something interesting, 100mg is the therapeutic dose, you are at 50 and noticing changes. One thing you didn't mention was the occurrence - has the frequency decreased? I know that they are heck on wheels right now and last forever but this aside are they coming less often?

I know when I was on it, I started at 25mg and was supposed to escalate to 100. I went a went a week at 25 then escalated to 50 and holy cow - major wild mood swings. That lasted 3 days, they told me to cut it in half and see what happened. At 25, the extreme personality issues left, but it helped zilch. My advice to you would be to cut it down a bit and see what happens. Don't stop but lower the dose, stay there a while and see what happens. It might be that you wouldn't need to get to 100 but it would help at a lower dose and if you can find a dose that will allow you to function and still helps the M it might be worth it.

Just my 2 cents. Smile
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Post  lentils on Tue Mar 16, 2010 11:15 am

The neurologist thinks I should stay on it and just up the dose again. His reasoning is that I'm getting migraines (his thinks the depression, nausea and bad mood is a migraine without the headache is a migraine and so do I) and I have not reached therapeutic level of t.

I will stop taking it for awhile, to see if I return to my old pattern of migraines. This could be a change in migraines-maybe not related to t. Doubtful, but I want to check it out.

Then I will probably start taking t again, starting out at a low dose and increasing slowly.This time I'll keep a strict diet.

I don't have many options for drugs and when t works, it works well. I had weeks of feeling good and was beginning to exercise again and enjoy life. But I don't really like having a migraine 5-7 days at a time. Work piles up, not getting any real nutrition for that long is scary and being depressed for that long takes a hard toll.

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Re: question for topamax users

Post  jennyds33 on Tue Mar 16, 2010 12:05 pm

I got put on Topomax and noticed mood issues. I got aggitated/angered more easily and had some depression. I quit it immediately. I've had a history of taking anti-depressants and just sitting through dealing with the mood changes and not going off it because the doctors told me to wait. I'm sick of it. I can't go a day at work with anger issues because I could easily get fired for acting on it.

Anyway, I went off cold turkey like an idiot and had the worst 4 day headache of my life.

I'd listen to your gut. If this doesn't feel like "you" then it probably isn't. The history of mood instability without drugs may make that confusing to detect though. And taper off with your doctors supervision.
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Re: question for topamax users

Post  Paradox on Tue Mar 16, 2010 12:06 pm

I was mis-diagnosed as bipolar while on Topamax due to the wild moods swings it caused. I lost two years of my life on various anti-psychotics for the bipolar that magically disappeared when I went off of Topamax.

My neuro said I was the second patient of his that this had happened to. The irony is Topamax is used off-label as a bipolar drug, but in my case it mimicked bipolar.

Topamax was a nightmare for me.
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Re: question for topamax users

Post  Almostangela on Tue Mar 16, 2010 1:02 pm

I take 100mg of Topamax/day. It was 3 months before the dopey and depressive side effect went away for me.

ANgela
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Re: question for topamax users

Post  estre004 on Tue Mar 16, 2010 2:30 pm

Everyone here probably knows my opinion by now. Get off of it!! I had the same thing happen to me. First the no appetite, then the stupidness, and then depression. I was still going to stick with it but woke up with a migraine so bad, I thought I was having a stroke. I quit cold turkey and never went back. I didn't have any side effects from going cold turkey either. I went almost immediately back to a normal person.

I take DHE as an abortive and it works like magic. I either catch it in time and it is gone almost immediately or if I'm not able to (which is rare) it takes a few hours. Before DHE they lasted anywhere from 24 hours to 72 hours. My blood pressure was borderline high before I used it and I have no problem with the DHE making it worse. If yours isn't high to start with, I don't know why you can't use it. Best thing that ever happened to me.

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DHE

Post  lentils on Wed Mar 17, 2010 4:32 pm

I would love to try DHE now that triptans are not working anymore. When I suggest a drug to the neuro, he always has some reason why he can't give it to me. I need to force the issue with him in a diplomatic way so I can find out if I need to get a new doctor. I can also try to get the GP to write me a script. I'll let you know what happens.

Thanks for all your input, it is invaluable.

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Re: question for topamax users

Post  LG on Wed Mar 17, 2010 7:12 pm

Try asking for Migranal. It has the same ingredient as DHE except it is a nasal spray. Sometimes doctors are a lot more willing to prescribe that instead. DHE 45 DOES usually work better but you can get the general idea of how ergotamines work for you by taking the migranal. I think, please do not quote me on this but DHE may be stronger and it is an injectable so look at it from the IV morphine vs morphine pill standpoint, you know?

If migranal doesn't work, do not cross DHE off the list though. There are many DHE users that have no success with migranal. Also, look up whatever migraine drugs you can find that have ergotamine as the active ingredient in them. Ask for them instead. Hope this helps!
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Re: question for topamax users

Post  estre004 on Thu Mar 18, 2010 8:05 am

Actually, Migranol is what I use. And I did get it from my GP, not my neuro. I can't imagine any reason for not prescribing it.

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Re: question for topamax users

Post  LG on Thu Mar 18, 2010 11:39 am

DHE and migranal are two different drugs but both have the same active ingredient. Every person reacts differently to different drugs and the different administration of drugs (IE IV, Nasal spray, pills ect.) and they have different bioavaliabilities so it helps to be specific.

Ergot has some scary side effects and long term effects. Please do your research before taking it. I would take it myself of course because I feel that being in pain as often as chronic migraneurs are is worse than the side effects and l/t effects are but still you want to be informed as much as possible. I would rather take my fioricet w. codeine and stadol over the Ergot though for long term management now that I have read all the medical documents.

Had I not found those as options though, I would have happily taken Ergotamine-based drugs on a weekly basis for my migs, but it does say a lot that I would prefer a narcotic/barb. combination over ergot. This is also because I smoke cigarettes and the risk of complications go up for me due to that factor. Hope this info is helpful. If you need any more help on researching Ergot please let me know. I have spent a large amount of my time reading up on it.
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Re: question for topamax users

Post  estre004 on Thu Mar 18, 2010 11:42 am

What are the side effects or dangers? I have taken it for years and have never had any.

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Re: question for topamax users

Post  LG on Thu Mar 18, 2010 11:57 am

Ergotamine can cause rare but serious side effects on the heart, including heart attack or stroke. If you have certain conditions, you may need a dose adjustment or special tests to safely take this medication. Before taking ergotamine, tell your doctor if you have:

high blood pressure;

liver disease;

kidney disease; or

coronary artery disease (or risk factors that include diabetes, menopause, smoking, being overweight, having high blood pressure or high cholesterol, having a family history of coronary artery disease, being older than 40 and a man, or being a woman who has had a hysterectomy).

http://www.drugs.com/mtm/ergotamine.html

Quick google search, although I have seen much more info out there I don't want to scare the living bejesus out of you guys from taking your meds. It's not as bad as it sounds, it is just really bad for a smoker. Plus, whats the deal with avoiding grapefruit juice? LOL I never found that out! Weird interacton...

Smoking raises this risk factor hugely. You shouldn't take this med if you have any blood pressure problems or are on any anti-depressants or b/p meds. Ergot can cause loss of circulation and ultimately you can loose your fingers and toes because of this if you smoke while taking ergot frequently, which is why they don't like to give you this if you a smoker. Big negative for me.

Bottom line, If you use as directed you should be more than fine as you would be with any drug a doctor gives you. If you use more than directed you may have a problem later on with the side effects as this is a stronger drug than most triptans..it is not as gentle and may cause more heart problems. That is why I am a tad scared of it.



October 24, 2006 — Overuse of ergotamine, but not overuse of triptans, increases the risk for ischemia in patients with migraines, according to the results of a retrospective, nested, case-control study reported in the October 10 issue of Neurology.

"It remains unclear whether overuse of triptans or ergot alkaloids is associated with an increased risk of ischemic events," write E. A. Wammes-van der Heijden, PharmD, from Utrecht University in the Netherlands, and colleagues. "The incidence of ischemic complications is extremely low when triptans are used appropriately. However, some patients use triptans more frequently than recommended, which may lead to medication overuse headache."

Using data from the PHARMO Record Linkage System, the investigators identified all patients with more than 1 prescription for either a triptan or ergotamine. Cases were all patients admitted to the hospital for an ischemic complication, and matched controls were assigned the same index date as the cases. The determinant was the intensity of use of triptans and ergotamine during the 1-year period before the index date, with overuse defined as use of 90 or more defined daily doses during that year.

Of the 17,439 patients who received more than 1 prescription, 188 cases and 689 controls were identified. Triptan overuse was not associated with an increased risk for ischemic complications (odds ratio [OR], 0.96; 95% confidence interval [CI], 0.49 - 1.90) nor did overuse of triptans in patients concomitantly using cardiovascular drugs increase this risk. In contrast, overuse of ergotamine was a risk factor for ischemic complications (OR, 2.55; 95% CI, 1.22 - 5.36), and patients overusing ergotamine and concomitantly using cardiovascular drugs were at highest risk (OR, 8.52; 95% CI, 2.57 - 28.2).

"In general practice, triptan overuse does not increase the risk of ischemic complications," the authors write. "Overuse of ergotamine may increase the risk of these complications, especially in those simultaneously using cardiovascular drugs."

Study limitations include possible lack of accuracy in the discharge International Classification of Drugs, Ninth Revision, codes; an estimated (rather than known) duration of exposure; use of an arbitrary cutoff to define overuse; possible residual confounding; and lack of data on smoking, family history, obesity, and fitness.

"Despite these limitations, we believe that our research contributes to the confirmation of the safety of triptans and emphasizes the risk of ischemic complications due to ergotamine overuse, so far only described in case reports," the authors conclude.

The authors report no relevant financial relationships.

In an accompanying commentary, Mark Obermann, MD, and Zaza Katsarava, MD, PhD, MSc, note the methodologic limitations of this study. However, they state that these findings contribute important information regarding the safety of triptan use in clinical neurology practice and regarding the apparent dangers associated with ergotamine, especially in older patients at risk for cardiovascular complications.

"General recommendations cannot be given until further, prospective research is conducted," Drs. Obermann and Katsarava write." They point out that this study suggests that a prospective trial of triptans is justified in patients who would previously have been excluded from treatment.

http://www.medscape.com/viewarticle/546527

Google it a bit more and you will find more studies and incidents of ischemia and heart problems correlated to Ergotamine than any other triptan. Take as directed, be careful and know what you take. Do your own research though, don't just follow mine. It is good to do your own research and if need be I will help but I want everyone to be informed on their own will. Very Happy

Hope this helps!
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Re: question for topamax users

Post  estre004 on Thu Mar 18, 2010 12:18 pm

lovegia - Thanks for the great response. I will bring this up next time I have a Dr. appointment, although neither my doctor nor neuro were concerned about me taking it and I fit some of those categories (not that I can count on them 100% though).

The article seemed more to be pushing triptans. All I can say is that how many of you would take Migranol if you knew that 95% of the time it would wipe out the migraine with one squirt of the nasal spray (taken at the first "inkling" of a migraine) and that at the other extreme during a full blown #10 migraine it would take the whole vial but would knock it out in a few hours vs. 1 to 2 days. That is my story. So it is that or dibilitating migraines 2-3 times a week. The side effects seem to pale vs. the good it does for me. After reading about hydrocodone, I frantically called my doctor thinking Iwas going to have liver damage from the tylenol and was told I had nothing to worry about. I think all of the warnings are to make sure they are covered if you are one of the very few that have a complication from a drug. If you don't take more than the dosage prescribed (and even if you take a little more because I think they lean to the cautious side), I think you are fine. Thanks again Lovegia. I'll bring it up just for my own peace of mind.

I do wish every one of you would have the results I have with Migranol. It works like magic for me.

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Re: question for topamax users

Post  LG on Thu Mar 18, 2010 12:43 pm

No problemo Estre, I think a lot of times they overexagerate, too. I do believe that as long as you take it reasonably you will be fine. I'm sure your doctor will say the same thing. It is still good to check being that I am not a doctor and I don't think giving medical advice online even if you are a doctor is a very smart idea Laughing

I still do think that Ergotamine is a much harsher medication than triptans just because of the mass amount of research I have done on the fungus itself. It will abort a baby if you were pregnant, in fact it is what they used to give woman to induce abortions. It was also used to stop uterus bleeding after childbirth. They stopped using it because it was so dangerous of a drug to the mothers and a lot of mothers had severe complications and died. I know it is clearly different because they use the right amount for migraine meds but the fungus itself is crazy! You should read up on it just because it is fascinating. Some people theorize that a large crop was infested with Ergot and it caused poisoning which in turn caused the craziness which was the Salem witch trials!!

I agree with you on the aborting a migraine factor. I would rather kill my liver and kidneys at age 60 and deal with it then (bc of narcotics and topamax) and be painfree for a majority of my life. I am one of those people who strongly believe that if you are in pain too much your system will revolt and you will be left in an can of worms even bigger than had you taken the meds in the first place. Pain is horrible to your body as is depression which is the next step after pain. Treat the pain, deal with the side effects later. It is the motto I live by. Anyone messes with my meds, I'll revolt! Mad

BTW every article that you read is going to be one-sided in one way or another. It is hard to find a completely neutral article. They are always trying to push their argument or their side of the story which is why I believe everyone should do their own research and read their own articles so they come to their own conclusions, ya know? tongue

BTW is it Migranal or Migranol? I'm pretty sure it's Migranal but I've read a lot of users of the med spell it with an "O". I'm not sure if I'm spelling it wrong all over the place! LOL
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Re: question for topamax users

Post  estre004 on Thu Mar 18, 2010 12:54 pm

You are right. It is Migranal (and I just picked mine up last night). I feel the same thing about pain. Pain is there for a reason (something is wrong). It is a warning to do something about it. I think wiping out the pain is so much more important than living with it. It isn't living. I would rather deal with the side effects later if there are any. Nobody can convince me that it is perfectly safe to have a migraine, especially when they get to the #10 level. I would take my risk with any drug any day.

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Re: question for topamax users

Post  Olee on Sun Mar 21, 2010 7:45 am

I suppose I am one of the more fortunate ones when it comes to Topamax. Yes I have had some symptoms of brain fog and mood swings, but after trial runs and a series of time of day and dosage adjustments, I'm ok now. The times I quit Topamax, the migraines came back with a vengeance. Keep in mind it never has been a cure all, it only lessens the frequency for me. I'm on a 150mg dose that is spread through out the day and into the night. I have vowed however that if things were to worsen, I will not increase the dose from here. The beginning was tough, finding the right dosage, dealing with the symptoms of taking the drug, educating the spouse on what to expect, but it worked out. Yes I sometimes get what I feel as a "surge" or realize I had a moment, but they are very few. I also realize some have had some really bad experiences and I would dump the drug as well if I had been their shoes.
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Re: question for topamax users

Post  AuntieBubbs on Sun Mar 21, 2010 11:05 am

Estre, LG, I was on migranol for a while - a long time ago, before I was on topomax, and thankfully it was before I was a smoker because the nuero sure as hell didn't mention THAT side effect or interaction - and it didn't do a darn thing for me. I disliked that medication very much. Sad
And topomax has been a life safesaver for me. So that's curious. I would never go back to trying ergots again. Of course, now I couldn't unless I quit smoking, which I should do anyway.
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Re: question for topamax users

Post  LG on Sun Mar 21, 2010 11:10 am

Bubbs, I don't think it would kill ya if you were to use it once or twice a month but I do think it would do some damage if you were to use it as your primary abortive medication if you were a smoker. Smile
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Re: question for topamax users

Post  AuntieBubbs on Sun Mar 21, 2010 12:39 pm

Ya, that's true. I really hated the stuff, though, so no great loss. Very Happy
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Re: question for topamax users

Post  estre004 on Mon Mar 22, 2010 7:44 am

lovegia - You said that Migranal was a much harsher drug than triptans which is probably true. But, how many people on this forum get relief from a triptan instantly? Harsher drug, better results. I compare it to taking an aspirin vs. a narcotic. You are going to get much better relief with the narcotic (if used responsibly).

It is amazing how all of us respond so differently to all of these drugs. Migranal is like magic to me and Topamax was a total nightmare. Others have the exact opposite effect. My goal is to live migraine free and whatever it takes to do that, I will do. It isn't that I can't live with pain (I'm have a high tolerance for pain), but migraines aren't just pain, they are disabling. I can't deal with that part.

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Re: question for topamax users

Post  LG on Mon Mar 22, 2010 8:14 am

estre004 wrote:lovegia - You said that Migranal was a much harsher drug than triptans which is probably true. But, how many people on this forum get relief from a triptan instantly? Harsher drug, better results. I compare it to taking an aspirin vs. a narcotic. You are going to get much better relief with the narcotic (if used responsibly).

It is amazing how all of us respond so differently to all of these drugs. Migranal is like magic to me and Topamax was a total nightmare. Others have the exact opposite effect. My goal is to live migraine free and whatever it takes to do that, I will do. It isn't that I can't live with pain (I'm have a high tolerance for pain), but migraines aren't just pain, they are disabling. I can't deal with that part.

Yeah Estre, I agree. It is strange how different drugs react with different bodies. IE: 1 fioricet with codeine will knock out my pain however I can take 2 (!!!) 10/325 hydrocodone pills and it does absolutely nothing. Hey, if migranal works...use it! Don't suffer in pain! I will forever say that daily pain is probably worse than most drug side effects put together. I feel like a wimp sometimes because I can't NOT take meds when I have a migraine. I have to take them...I can't do what I need to do on a daily basis without them.
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