New Here Doctor Precribed Topamax Nervous

Medication 💊 Anticonvulsants
61

Scott…i agree with you. It just deponds on the person regarding anti-anxiety medication. Xanex has been a godsend! This medication helps me to feel more stationary. It took 14 years to finally get a confirmed diagnosis of Migraine Equivalent. A number of years back when i weened the Xanex down from 7 tabs per day to one per day…i’m not going to say it was easy…it took time but i certainly wouldn’t call it a Horror story. Xanex has helped me keep working, go to movies, resteraunts, etc. I will be starting Topamax very soon…and will adventually find out if it works for me or causes too many side affects. If the side affects are too extreme i will stop it. I know a number of people here are benefiting from it.

Joe

62

— Begin quote from “joseph0952”

But I’m not going to put Topamax down if it doesnot work for me because i know a number of people here are benefiting from it.

— End quote

Actually, an ENT told me to stay away from Topamax.
I threw it out. (Should have done the same with Benzos.)
Xanax has given me a whole new type of vertigo that people would shoot themselves in the head over.
Many people have not only not gotten rid of vertigo with Benzos, it’s actually how they GOT vertigo.

Heather

63

I think we should all share our experiences, good or bad. I can now make an educated decision for myself over whether it is worth the risk to try Klonipin. Maybe I wouldn’t have any problems with it, or maybe I would end up very sick from it like Heather. Since I am functional most of the time and continue to work, although I am often miserable doing it, I choose not to take the risk.

The same goes with Topamax. I could not function on it. It almost destroyed my life. Others here have found great benefit from it. Anyone considering a trial of Topamax should know both sides of the story so they can weigh their own risks.

Thanks, Heather! You can now say that you helped save at least one person from potentially ruining her life.

64

— Begin quote from “MarciM”

I think we should all share our experiences, good or bad. I can now make an educated decision for myself over whether it is worth the risk to try Klonipin. Maybe I wouldn’t have any problems with it, or maybe I would end up very sick from it like Heather. Since I am functional most of the time and continue to work, although I am often miserable doing it, I choose not to take the risk.

The same goes with Topamax. I could not function on it. It almost destroyed my life. Others here have found great benefit from it. Anyone considering a trial of Topamax should know both sides of the story so they can weigh their own risks.

Thanks, Heather! You can now say that you helped save at least one person from potentially ruining her life.

— End quote

Marci,

What do you take if anything ? I have been told the only way to get this under control is with medication but I am somewhat leary of the preventatives with all the side effects.

65

Benzo equivilencie table
xanax verses klonopin ect…

benzo.org.uk/bzequiv.htm

B2 400mg,megga B vit, vit E,omega 3, and verapamil 180 only, the verapamil at 240 bloated me and gave me asthma.
I’ve found the 180mg a day just as benificail as 240mg a day, and without the Side effects.

topa over 25mg gave me anxiety big time and depression
and made my hair fall out…

and no I never had cognetive symptoms last longer than one day…
my tingling only lasted a couple of day’s, period.
only a horrid taste in mouth 24/7
and it made my migraines worse from all the anxiety, I was feeling at the time…

my truth…jen

66

Which is very curious to me, because I’ve never been able to take every OTC meds without extreme reactions. When my dizziness first started I took 1/8 the smallest dose of Antivert and it made my symptoms worse for hours. When I started Zoloft i had to cut those pills into 1/8ths or I would hallucinate. But once I got past the Zoloft, everything else was a breeze.

Not sure what happened or when :slight_smile:

JJ

67

— Begin quote from “MarciM”

Thanks, Heather! You can now say that you helped save at least one person from potentially ruining her life.

— End quote

If that’s true, then the tears in my eyes as I type this and the smile on my face are worth it. :smiley:
Actually, I got back online, thinking of you, because I was going to tell you that if you by chance slip into the trap I did and take it,
please be aware that Klonopin may knock the hell out of our white blood cell count which is your immune system fighter.
My Doc and I were really concerned where my white cell drop came from and it was through my online research that I found an RN talking about
Klonopin and White Blood Cell destruction. So when I backed off the Klonopin, my white blood cell count eventually came back up to normal again.

Heather

68

— Begin quote from “Timeless”

Marci,

What do you take if anything ? I have been told the only way to get this under control is with medication but I am somewhat leary of the preventatives with all the side effects.

— End quote

I recently started Toprol, which is a beta blocker. I haven’t noticed any side effects except for one positive effect. It seems to make me more alert during the day. It’s too soon to tell if it will help the migraine or not. I’ve tried two other preventatives. Verapamil was the first. It helped with the vertigo but caused severe constipation and mild headaches. I’ve already told you about my Topamax nightmare.

I also take a lot of supplements, but I have no idea whether any of them work or not.

69

My MAV went to hell soon after starting Lexapro. I don’t think SSRIs are the devil - but they are for me.
I may even have crashed after taking Xanax XR for three weeks - I don’t hate benzos because of it. They can be brilliant drugs.
Now, Remeron on the other hand, I admit to kind of hating. I’ve been on it for pretty much every day since I got sick enough to become housebound, and still can’t come off it! I REALLY wish I had ignored the temp doctor I called the 2nd, 4th and 5th days, complaining about increasing dizziness, when he/they told me to keep taking it until I spoke with my main doc.

70

BTW, there are plenty of sites that are the complete opposite of the benzo support groups, claiming (through their own experience, often 10+ years) that they are perfectly safe when used properly. SOME will of course get bad side effects, that’s inevitable from ANY medication. Aspirin probably causes far more deaths than all benzos combined, if you want to take that stance… While benzos are more likely to, more or less, ruin one’s life, if you’re very unlucky.

/Tran - hoping to be neutral here

71

— Begin quote from “Timeless”

Long story short after a years worth of pure heck, and seeing numerous doctors my ENT is the one who said I have MAV.
He is great and I only wish he was my neurologist. He sent me back to her for treatment and she immediately was resistant to his findings. But it all makes sense and all the symptoms line up.
She finally decided to put me on Topimax with very little explanation of what I should expect. I am very nervous about this and wish I could see another doctor to follow my treatment plan. I live in the Atlanta Georgia area and do not know where to turn.
I have been so sick for almost a year and have been out of work since July and she just said , start taking this and go back to work. I do not even know if this is going to work, I am very scared and do not know where to turn.
Any suggestions would be appreciated…
Thanks for you time.

— End quote

So, Timeless, have we answered your questions & solved all your problems yet? :mrgreen:

72

— Begin quote from “Julie”

Cmoc - the alfa PXP is growing my hair back, that’s why i’m not angry about it any more :slight_smile: It does that across the board, with everybody taking it. One of my gray/bald friends now has a full head of brown hair. One woman, because of a thyroid condition, was having to pin in hair pieces, had lost all the hair under her arms as well as her pubic hair. It’s all grown back. Now she’s complaining about having to shave!

About the email alerts, nobody is getting them. Tranquility said he alerted Adam.

Julie

— End quote

WHERE do you get alpha pxp? I can’t find anyplace. I want my damn hair back.

73

— Begin quote from “joy”

— Begin quote from “Timeless”

Long story short after a years worth of pure heck, and seeing numerous doctors my ENT is the one who said I have MAV.
He is great and I only wish he was my neurologist. He sent me back to her for treatment and she immediately was resistant to his findings. But it all makes sense and all the symptoms line up.
She finally decided to put me on Topimax with very little explanation of what I should expect. I am very nervous about this and wish I could see another doctor to follow my treatment plan. I live in the Atlanta Georgia area and do not know where to turn.
I have been so sick for almost a year and have been out of work since July and she just said , start taking this and go back to work. I do not even know if this is going to work, I am very scared and do not know where to turn.
Any suggestions would be appreciated…
Thanks for you time.

— End quote

So, Timeless, have we answered your questions & solved all your problems yet? :mrgreen:

— End quote

Getting close… :wink:

In all honesty thanks for all the comments as I know we are all different in our reactions to medications and the belief as to whether or not they are helping each one of us.

I think above all it has to be a personal decision as whether or not to take a leap to try something new and different to try and improve our condition. What works for me , may not work for you and vice versa, so I understand that is all part of the trial and error of this disease. And discussion is good. We all have varying opinions of what works and what does not so I take it all under advisement and read and talk with the doctors to may an informed decision.

I tend to be skeptical and cautious when it comes to medications because I have never been one to take very many for anything. That is just my makeup and there are many reasons why. Not the least of which is my mother having been very dependent and addicted in my opinion to prescription drugs. But at some point I have to understand that I may never get back to a semi normal life without some type of assistance from medication, but I want to learn about them before I just start off on a journey from which there may be no return.

I have not started the Top yet as the doctor that prescribed them for me is not who I am going to continue to see so until I have someone I trust and feel comfortable with I just do not want to start down this path, good, bad or indifferent.

I thank you all for your input and appreciate your thoughts or this and other issues concerning this disease. With discussion we can all learn and who knows one day collectively we may figure out a good approach to controlling our symptoms.

I have learned more from being on this forum in a short period of time than I have from many of my doctors and knowing that there are others that suffer helps me better understand that I am not crazy but am but one of many who is affected by this disease.

74

— Begin quote from “thornapple”

— Begin quote from “Julie”

Cmoc - the alfa PXP is growing my hair back, that’s why i’m not angry about it any more :slight_smile: It does that across the board, with everybody taking it. One of my gray/bald friends now has a full head of brown hair. One woman, because of a thyroid condition, was having to pin in hair pieces, had lost all the hair under her arms as well as her pubic hair. It’s all grown back. Now she’s complaining about having to shave!

About the email alerts, nobody is getting them. Tranquility said he alerted Adam.

Julie

— End quote

WHERE do you get alpha pxp? I can’t find anyplace. I want my damn hair back.

— End quote

Thornapple,

You can email me at: jjames@accu-doc.net

Not only do i have a full head of hair, but it is back to my God-given color - reddish-brown - no more gray (and I had my first gray hair when I was 13!)

In addition, I am having weekly improvements in symptoms. I have gone off one of my preventatives so far and am working on a second one. I am active, happy, involved with life, reading, exercising, doing ballet!!! :slight_smile: Driving is still a trigger, but not as bad - i still load up on ibuprofen before a drive, but no benzo, so that’s still a big deal. I’m involved in creative, intellectually challenging projects. I’m dreaming again, and journaling them every morning. In other words, I’m getting my old life back. It would never have happened without this stuff, never. Hain called me intractable the last time we spoke.

And you heard about my dog’s cure, yes? If not, she had a heart murmur - we were going to put her down because she was coughing and gagging due to congestion. You’d think she had smoked all her life. I started her on PXP. ON THE FOURTH DAY she quit coughing!! I took her to the vet - heart murmur was gone.

I put my husband on PXP. After a month he had his labs taken. He was a mess regarding cholesterol, triglycerides, HDL/LDL, kidney function, BP, he was pre-diabetic. They are ALL normal and his BP is normal, all without meds.

before the lightbulb was invented it would have been unbelievable, unthinkable, unimaginable. I remember when I was young and they used to talk about a PC in every house. It sounded space age!

Someone had a leap of intuitive genius and there are many people in the U.S. cashing in on it and getting well.

The company has these statistics about migraines: the product has an affinity for the nervous system and a cure rate of 70-75% for migraines. That’s cure - no more triggers, no more relapses.

that’s it for me,

Julie

75

Julie -

Thats fantastic !!! Ballet??? That says it all right there. :slight_smile:
I know of several people near me interested in PXP, a few have heard of it, and have heard of different claims of what it can do. Seems most everyone is like me, leary because its so hard to find any info on it.
I’m gonna take the plunge with it after the holidays - soon as I recover financially from the Christmas drain.

Thats pretty exciting stuff!!!

Kim

76

Hey Julie,

I am so glad that you are making progress with your MAV. This is such exciting news! The Topamax and PXP appear to be giving you lots of help. Please keep us posted.

Joe

77

I just started taking Topamax on September 13, 2010, 1/2 tablet of 25 mg. - - working my way up to a full tablet after 7 days and 2 tablets after 2 weeks - - which I don’t see happening anytime soon due to some side effects. I hate the way I feel on this drug, I feel it makes me feel nervous with lots of motion, exaggerates a lot of my MAV symptoms. I can honestly say I feel worse taking this drug, but am told to hang in there because it does get better. Does it?? I am very frustrated and scared taking this medication and would like to know if anyone else who started this med also had these very same symptoms?

I did read the posting with the girl who’s hair was thinning also with this medication and that concerns me also since I already have fine hair and this is the last thing I would want to happen. I am willing to hang in there another week or so if there is a light at the end of the tunnel so I appreicate an input from anyone who has been through this. I was also wondering if anyone has tried chiropratic and massage therapy to help with the head/neck area in helping with MAV vertigo?? I swear that when my neck is killing me, I get knots in that area, that this really triggers some of the vertigo. I am leaning towards looking in that area, along with following somewhat of a strict diet, to see if that helps with my MAV but am interested if anyone has found some holistic relief from this crazy MAV instead of taking drugs such as Topamax? Just looking for a better way to help cure or live with this illiness.