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 Topamax 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.
Iām not sure anyone here would disagree with this - with Topamax anything goes in terms of what to expect.
Were you given dosing instructions? If you were, it doesnāt sound like you were given much to go on, soā¦
Iām a patient of Dr. Hain at Northwestern University in Chicago and I can tell you that he advises you start at 25 mg for one week and increase by that amount once a week unless:
you get any tingling. If so, stick at that dose until the tingling goes away. When it goes away, continue your titration.
you get any cognitive side effects (memory problems). If so, reduce your dose until they go away. when they go away, continue your titration.
BTW, i started with 1/4 of a 25 mg tablet, but soon gained enough confidence to titrate 1/2 a pill a week.
I know a people have a very hard time on this med, and others, like me, have had no problem at all, except for some minor tingling and cognitive SEs. I had great relief of symptoms with Topamax. I was literally housebound, Topamax got me out of the house, on foot anyway. My biggest complaint is that it has thinned my hair, but another product Iām taking is growing my hair back, so thatās all working out fine.
Iām not sure anyone here would disagree with this - with Topamax anything goes in terms of what to expect.
Were you given dosing instructions? If you were, it doesnāt sound like you were given much to go on, soā¦
Iām a patient of Dr. Hain at Northwestern University in Chicago and I can tell you that he advises you start at 25 mg for one week and increase by that amount once a week unless:
you get any tingling. If so, stick at that dose until the tingling goes away. When it goes away, continue your titration.
you get any cognitive side effects (memory problems). If so, reduce your dose until they go away. when they go away, continue your titration.
BTW, i started with 1/4 of a 25 mg tablet, but soon gained enough confidence to titrate 1/2 a pill a week.
I know a people have a very hard time on this med, and others, like me, have had no problem at all, except for some minor tingling and cognitive SEs. I had great relief of symptoms with Topamax. I was literally housebound, Topamax got me out of the house, on foot anyway. My biggest complaint is that it has thinned my hair, but another product Iām taking is growing my hair back, so thatās all working out fine.
Julie
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I am to start with 25mg for one week, then increase to 50mg the second and to 75mg the third and 100mg the fourth . I think that may be too fast. She wants me to take them at bedtime.
Has it helped the vertigo part of your migraine?
I am to see my primary doctor on Tuesday and I am going to talk to her about sending me to see another Neurologist to get a second opinion on my treatment. I donāt mind trying it but she told me she would see me in four months.
I would think it should be closely monitored when you start a new medication.
The dosage sounds right, myself I take 50 mg. morning, 50 mg night. I never had the tingling SE, but read up on it, you will fell better. As far as the vertigo, yes topamax, took care of me for about 18months. Myself, I would talk to my neuro about going back to work after I stared feeling better from the topo, you might not even need to to go up to 100 mg. Try it out, if you feel 100% at 50mg hold steady for a while, if not move up to 75mg. and so on. But you my want to look for a new nuero if they will not work with you. Good Luck and Iāll put in a prayer for you.
Thatās all i have is dizziness, no headache, so yes, it helped the dizziness part calm down quite a bit.
I guess Iāll speak up for Joy and send her a PM so she can confirm how much of this is correct. she went with 25 mg to start and 25 weekly titrations. I donāt remember if she had any side effects at all. It took care of her headache. I canāt remember (sorry Joy) what it did for her dizziness. But I think she is, so far, happy with it.
iāll PM her.
But I know there are others are on this forum who didnāt get past a day or two because of bad side effects.
Thank you all for your input it cetainy helps to see how others have responded.
I am to see my primary care doctor tommorrow and discuss with her changing neuroligist becasue I do not feel my current one is on board with this issue.
Does anyone know of a doctor in the Atlanta area that specializes in treatment of this as I have heard some neurologist are just not in tune with this disease.
Without giving consideration to other posts ā¦ Iām really swamped with work right now ā¦ Iāll give my brief two cents about my Topamax experience so far, limited though it is.
I started Topa at 25 mg a little over a month ago to treat mostly headaches & dizziness. The first, oh, 4 days or so I was absolutely goofy ā¦ talking to my plants, talking to strangers in the grocery store like they were my best & long-lost friend. It wasnāt entirely an unpleasant experience & as long as I wasnāt left alone in public I was okay :mrgreen: At the same time I got completely off Effexor, which might have added to the feeling of āfreedomā or as my neurologist put it ālack of inhibitionā.
Anywho, my headaches have lessened & the dizziness has, too. Trigger food is still a problem, but itās a distinct problem - I donāt just seem to get a headache out of the blue anymore. Iām due to increase to 50 mg this weekend. Wanted to wait until a holiday weekend so that Iād have a few days to āequalizeā before having to go back to the office. If I go to the mall this year on Friday after Thanksgiving, it may be a memorable one! Almost looking forward to seeing how crazy I become.
One more thing: In my humble opinion itās very important to have a doctor you trust; just make sure youāre not trying to find a doctor whoāll say what you want to hear. I hope that didnāt sound offensive - I didnāt intend it to. So many doctors donāt agree with each other. Hard to figure out which one knows best.
Oh yeah ā¦ re side effects ā¦ I did the ādonāt ask, donāt tellā method. My neurologist didnāt specify & I didnāt read the sheet accompanying the Topamax. I didnāt want to freak myself out prematurely. If Iād started having something weird happen (other than the goofy 'tude), I would have checked the sheet to confirm.
One more thing: In my humble opinion itās very important to have a doctor you trust; just make sure youāre not trying to find a doctor whoāll say what you want to hear. I hope that didnāt sound offensive - I didnāt intend it to. So many doctors donāt agree with each other. Hard to figure out which one knows best.
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I understand your point , no offense taken. I am not trying to do that I just want to find someone who understands the issue that migraine is more than just a headache and I know the one I am going to does not fit that bill.
My husband did not like her at all and that says a lot to me, it was not just me. As he said she was not listening to either one of us describe what all has been going on and transpired.
Thanks for the comments, maybe going to try and start the medication after the holidaysā¦do you have any problems driving with the medication or your circumstance.
If a doctor would prescribe a drug like that, and then say-- see ya in 4 months, I wouldnāt walk, Iād run from that person.
I would not take that medication unless you have a doctor you trust, to lead you through.
Topamax is not a lightweight drug.
If you have gone this long without the drug, you can go a little longer until you find a competent doctor.
If a doctor would prescribe a drug like that, and then say-- see ya in 4 months, I wouldnāt walk, Iād run from that person.
I would not take that medication unless you have a doctor you trust, to lead you through.
Topamax is not a lightweight drug.
If you have gone this long without the drug, you can go a little longer until you find a competent doctor.
Heather
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That is my thought process , Heather. I am not a big medication person anyway and to put me on this and then basically wash her hands throws up read flags to me.
As I said earlier she was very resistant to the whole MAV isssue to begin with. :shock:
i had a doctor who did that for awhile and he had no excuse, he was a neuro-oto who was trained at Johns Hopkins. I would repeat, You mean you want me to take X amount of X and just stay there for 3 months. Heād say, yea. So i made a habit of calling him every Friday. He didnāt seem to mind. Once just out of curiosity, I asked him if heād like me to come in. He said, no, we seem to be doing just fine over the phone.
Since I had such a hard time with travel, that probably was the best way to treat me, but how many of his patients were actually calling him once a week?
Normally I would go on about why you shouldnāt fear a med. Summed up, you never hear the good things about it. The people with good results go away while the people with bad results complain and complain.
In this case where your doctor didnāt give you any directions on how to take it, and come back four months laterā¦ well, I would have to agree with a couple of other people and advise that you find a doc that can give you better direction.
I have seen more people disapear from these forums after good results from meds than remained after bad effects, so I will try enforce what I said a moment ago, donāt fear the med, but maybe the directions you have been given.
You should follow your instincts regarding the doctor. I would get a second opinion as you mentioned if I were you - before you start the med. As Heather said, Topamax is no lightweight drug. I almost took a leave of absence from work because of it. I did a two-month trial and the cognitive side effects were devastating to me. I quit the Topamax so I wouldnāt have to quit my job.
Now, I am not saying you shouldnāt try it. As youāve heard, it is a helpful med for some. But I think you should go into it with close guidance of a doctor you trust. Also, there are other meds with fewer side effects you may want to consider trying first. I suggest you discuss this with your primary doctor and a second neurologist if you decide to see one.
Just my opinion. Good luck! I hope you find some relief soon!
You should follow your instincts regarding the doctor. I would get a second opinion as you mentioned if I were you - before you start the med. As Heather said, Topamax is no lightweight drug. I almost took a leave of absence from work because of it. I did a two-month trial and the cognitive side effects were devastating to me. I quit the Topamax so I wouldnāt have to quit my job.
Now, I am not saying you shouldnāt try it. As youāve heard, it is a helpful med for some. But I think you should go into it with close guidance of a doctor you trust. Also, there are other meds with fewer side effects you may want to consider trying first. I suggest you discuss this with your primary doctor and a second neurologist if you decide to see one.
Just my opinion. Good luck! I hope you find some relief soon!
Marci
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This is my concern that she just wants to turn me loose , say go back to work and see me in four months.
What other drugs have fewer side effects, this is all new to me.
What product is helping your hair? Mine has got thinner, menopause thing, but it is putting me off starting the topo a bit cos I dont want to lose any more!
Also, do you know why I havent had the reminders sent to my email box when there are new posts, they just stopped a few days ago, I suddenly realized today, I hadnt seen any.
What other drugs have fewer side effects, this is all new to me
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Verapamil is a common drug to start with because it has the fewest side effects. It is a calcium channel blocker. It is typically not a cure all, but it has helped me and others get the vertigo under control. The only bothersome side effect I experienced was constipation. There are many medications and supplements available for migraine prevention. Check out this thread: http://mvertigo.cloudapp.net/t/looking-for-neurotologist-in-arizona-help/127
What other drugs have fewer side effects, this is all new to me
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Verapamil is a common drug to start with because it has the fewest side effects. It is a calcium channel blocker. It is typically not a cure all, but it has helped me and others get the vertigo under control. The only bothersome side effect I experienced was constipation. There are many medications and supplements available for migraine prevention. Check out this thread: http://mvertigo.cloudapp.net/t/looking-for-neurotologist-in-arizona-help/127
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Thanks I called my ENT and he gave me the name of another doctor that I have made an appointment with but cannot get into see him until December 22. Wonder if I should go ahead and try the Topimax or just wait until after I see him.
Since you are already not working, you could try it. Go slow, though, like Julie suggested. I was given the same instructions you were, and it was a bit too fast, so I backed off to 12.5 mg for a start. I then worked my way up to 100 mg. Like I said, the cognitive effects are what did me in. I am a CPA and a business analyst, and there were times when I couldnāt do simple math while on the Topamax. I struggled with typing emails correctly and I couldnāt organize my thoughts well enought to complete projects that would typically not be a problem without the Topamax. I suppose I could have tried backing off to lower doses, but I decided I could not risk my job or my sanity any longer. Like I said before, though, there are others here who had much better experience with Topamax. The only way you will know whether it works for you is to try it yourself. Youāll have to decide whether you are comfortable doing that now or if you would rather wait until after the second opinion.
Cmoc - the alfa PXP is growing my hair back, thatās why iām not angry about it any more 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. Itās all grown back. Now sheās complaining about having to shave!
About the email alerts, nobody is getting them. Tranquility said he alerted Adam.
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. Itās all grown back. Now sheās complaining about having to shave!