Getting off of Topamax and trying Butterbur/Feverfew

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Getting off of Topamax and trying Butterbur/Feverfew

Post  KerrieW84 on Fri Oct 26, 2012 12:48 pm

I don't like the effects of Topamax. Like not being able to think clearly and such. I still get headaches, but the neurologist seems to think its working because I haven't had an extreme migraine in the last 2 months. I have however had 28 headaches within those 2 months. I'm taking myself off of Topamax and trying Butterbur and feverfew together. I hope this works because I'm tired of my head killing me. I am also starting to record the barometric pressure to see if this is the main cause of my migraines. Any info on Butterbur and Feverfew, feel free to send me that info! Thanks!

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Re: Getting off of Topamax and trying Butterbur/Feverfew

Post  trutland on Fri Oct 26, 2012 1:35 pm

I'm new to Topamax and am having some side effects, but am trying to stick it out. Keep us updated on the Butterbur/Feverfew adventure.

What are your Topamax side effects, if you don't mind me asking? What was so severe that made you decide to stop taking it? I'm titrating up to 100 mg tomorrow.
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Re: Getting off of Topamax and trying Butterbur/Feverfew

Post  KerrieW84 on Fri Oct 26, 2012 9:59 pm

I am having a hard time coming up with words when I'm speaking. I notice it more and more and I'm only taking 25 mg. I've also noticed I get more headaches with it. I will keep an update on the Butterbur and feverfew when I begin it next week.

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Re: Getting off of Topamax and trying Butterbur/Feverfew

Post  Jilly on Fri Oct 26, 2012 10:02 pm

I just want to give you a bit of a heads up about Feverfew. What I am going to say probably won't be anything new to you if you read all the precautions about the herb. I read all the warnings and precautions about it when my own doctor told me to take it. I was using a knife at work and I cut my finger. I went to the emergency room. The doctor fixed it up and told me it should soon clot. Three hours later it was still not clotting. My nurse was looking mighty worried that my finger would not stop bleeding. When I had to have surgery I made sure I stopped taking it a few weeks before undergoing the procedure. I still take Feverfew now. I do not take Butterbur.

I was titrating down off of Topamax because I was having some bad side effects at the higher dose, but now I am at a lower dose I am handling it much better. I also am sort of scared at what will happen to me if I go off of the Topamax completely, if the migraines will go completely out of control. It is also so hard to get used to this stuff. I also have been doing the injections for my triptan instead of the oral form, which seems to have helped a lot more.

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Re: Getting off of Topamax and trying Butterbur/Feverfew

Post  tdu on Sat Oct 27, 2012 5:36 am

KerrieW84 wrote:I don't like the effects of Topamax. Like not being able to think clearly and such. I still get headaches, but the neurologist seems to think its working because I haven't had an extreme migraine in the last 2 months. I have however had 28 headaches within those 2 months. I'm taking myself off of Topamax and trying Butterbur and feverfew together. I hope this works because I'm tired of my head killing me. I am also starting to record the barometric pressure to see if this is the main cause of my migraines. Any info on Butterbur and Feverfew, feel free to send me that info! Thanks!

I had to get off it a couple of months ago as well. Even on a lower dose, I was having some pretty bad side effects. It was definitely helping, but unfortunately the side effects weren't manageable, and not only weren't tapering off, they seemed to get get worse.

I started a Butterbur regiment along with Magnesium, high doses of B-2 (recommended by the neurologist who put me on Topomax), and Vitamin D. If you are going the supplement route you may want to look into Magnesium and B-2 as well as they both are recommended for migraines.

I have only been on this regiment for about a month, and I haven't seen much effect. I did a butterbur regiment once in that past though, and it took a couple of months for me to see effects.

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Re: Getting off of Topamax and trying Butterbur/Feverfew

Post  Seaine on Sat Oct 27, 2012 4:59 pm

I used to take something called "Migravent" which had a combo of things in it, including Butterbur and Feverfew. I remember it took 5 weeks before I saw an effect from it. At the time I was having migraines every single day, and then on the Migravent they went down to 4-5 days per week.
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Re: Getting off of Topamax and trying Butterbur/Feverfew

Post  trutland on Sat Oct 27, 2012 7:49 pm

KerrieW84 wrote:I am having a hard time coming up with words when I'm speaking. I notice it more and more and I'm only taking 25 mg. I've also noticed I get more headaches with it. I will keep an update on the Butterbur and feverfew when I begin it next week.

I'm having this problem, too...but I also have it when I have a migraine of long duration, like this last one. Has anyone noticed any issues with dyslexia? I've been transposing letters in common words when writing/typing. I also lost my car in the WalMart parking lot today. Rolling Eyes

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Going off of Topamax?

Post  parndee on Sat Feb 02, 2013 9:24 am

It's comforting to read that I'm not the only one experiencing severe problems from taking this drug. I started out two years ago on 75mg because of chronic migraines (~15/month); migraines that unfortunately also trigger facial myokymia. The 75mg Topamax most certainly decreased the frequency and severity of the migraines and almost completely got rid of the facial myokymia, but since my headaches/myokymia had not completely gone away, the neurologist decided to increase my dose to 100mg, then later to 125mg. So, two years into this the facial myokymia is completely gone, but the headaches occur at the exact same frequency as when I was on the 75mg dosage. Now onto the horrible side effects.

Over the course of two years, due to the increasing memory loss, lack of being able to concentrate, being lost in a fog, lack of being able to do simple (and complex) tasks at work that I had been doing for years, this drug has taken so much away from me, so much of who I am, who I was proud to be. I always liked being an achiever, being on top of things at work, being able to do things for other people, but this drug and the hope that it would cure me of these wretched headaches and that I could still function fairly normally is a complete falsehood. I was ramped up to 125mg a few months ago and for about a month now I can honestly say that I feel like I have been going crazy. I was just last Friday ramped back down to 100 mg, but let me describe some of my symptoms. Incredibly slow thinking that has decreased my reaction time. I am 45 years old and have never had an accident. I had one two weeks ago in my own driveway. I got startled by the banging of a garbage truck behind me and was so foggy in my head and so slow to react to my vehicle backing out while this was happening that I ran into my own fence next to the driveway. Two, I have had to demote myself at work. I have a high level job that requires complex thinking and I can no longer do the job. I was continuously failing and had to tell my boss that I could no longer do it and why. Fortunately, he was understanding and has reallocated me to another position for now. Third, and possibly most disturbing, I sometimes can't tell reality from imagination. For instance, yesterday, I told my husband that I put the laptop in the dining room on the side chair. When I woke up this morning, it wasn't there. I was completely confused. In my mind, I had put the laptop in the dining room on the side chair, but in reality I had not. I had projected something in my mind into reality. It never actually happened. Fourth, there are huge holes in my memory. People tell me I have done things. I have no memory of it.

My advice to anyone who has recently been put on this drug is that if you are experiencing even the slightest difference in self--you don't think you are quite up to par to the way you were before taking this drug, then you probably either need to go off of it or at least mention the problems to your doctor and make a judgement from there. I did not mention the side effect to my doctor until recently. I found out what the side effects were a few months after I began taking the drug and stupidly thought I could work around them because I so badly wanted to be free from my headache problems. Unfortunately, the side effects went from manageable to rather severe in a fairly short period of time.

Just as an addendum, I suppose I never went through the anxiety that people have described in their posts because I have been on panic attack medication for a couple years now. I have read quite a lot concerning panic attacks, and certain medications can trigger panic attacks in people. I'm not an M.D., but it sounds from these posts as if Topamax is one of those medications. If you still experience panic attacks after going off Topamax, you need to get a doctor's help, because I suspect that Topamax was the trigger for the attacks.......and depending on your symptoms, panic attacks may be unsafe and debilitating.

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Re: Getting off of Topamax and trying Butterbur/Feverfew

Post  parndee on Sat Feb 02, 2013 9:32 am

Sorry, I meant to post the above as a new topic, but my poorly functioning brain landed it in the wrong place. Embarassed

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Re: Getting off of Topamax and trying Butterbur/Feverfew

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