New Here Doctor Precribed Topamax Nervous

— Begin quote from “MarciM”

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 couldn’t do simple math while on the Topamax. I struggled with typing emails correctly and I couldn’t 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. You’ll have to decide whether you are comfortable doing that now or if you would rather wait until after the second opinion.

— End quote

Thanks for the information. I am going to talk with my primary doctor tomorrow. Since I will be seeing another neurologist in December, I really think I may wait to start the drug. My job is very detailed oriented and that would be a huge problem for me if I had that type of reaction and tried to return.

What do you all think about a low dosage of anxiety medication to take the edge off in the interim. I am very cautious, of these because my Mom became addicted to them many years ago. But right now , some days I feel like I am going nuts. :smiley:

Hi Timeless,

I read your story and your share in the Motion Sensitivity post and i can relate to some of your symptoms. The Wave-like symptoms that you have…i can identity with. My condition started out with occasionaly waking up in the wee hours of the morning with vertigo (1989-1991)…and then in 1992 had another severe case of waking up from intense vertigo and approximatley a half hour later i began to feel the rocking…wave-like motion and much of it is felt in my head. I feel like i’m moving…not the outside world. What has helped me the most over the years is anti-anxiety medication…i understand it helps to suppress the vestibular system. So many of us who have MAV or mav like symptoms…i soppose this headache like condition affects our inner-ear to some degree. Without medication i would be homebound. Not only do i have the wave-like motion…but my mind and inside my the head does not feel relaxed. There is always a tension like feeling.

Timeless…i can feel the Pultzing like sensation in my head (as if i was having a headache)…but i mostly feel tension and motion and no pain. Guess that is why for many of us Mavr’s this is a Silent Migraine. I don’t have the run of the mill excrutiating migraine. I am one of these people who has never outgrown Motion Sickness…mostly in curvey car rides in mountains, carnival rides that ago in circles and spending time on a fishing boat. Most people out grown this but i understand from my doctor than a significant portion of folks diagnosed with MAV have had a troublesome past with motion intolerance. That is me to a tea!

I was initially diagnosed with Panic Disorder…then a few years after that i was told i have Inner-ear dysfunction w/anxiety and another doctor thought i might have a severe case of Benign Positional Vertigo (which my symptoms seem very similar to some degree). But in 2006 Dr. Robert Baloh at UCLA diagnosed me with “Migraine Equivalent”. I tried Amptriptyline but no help. I have started seeing a new Neurologist at the VA hospital i go to and he wants me to start Topamax…25mg per day for a week and then increase it by another 25mg and so on till i reach 100mg. I am going to begin this med after Thanksgiving. I admit…i’m a little nervous but if for some reason i can’t tolerate it…i will let the doc know and stop it.

I have also had Panic like symptoms…particularly when i feel like i’m going to go into a vertigo like spin at work or a movie. That does not happen very often anymore…but it use to be more common. My vertigo has dropped off considerably over the years but i still have the rocking/wave-like motion. I am taking one tab of Xanex per day and Verapamil.

How did your condition initialy begin? Was there a fair amount of vertigo at first? Have you always been motion intolerant? Along with your wave-like motion…do you feel a mild pultzing like feeling in your head?

Joe

Joe

— Begin quote from “joseph0952”

Hi Timeless,

I read your story and your share in the Motion Sensitivity post and i can relate to some of your symptoms. The Wave-like symptoms that you have…i can identity with. My condition started out with occasionaly waking up in the wee hours of the morning with vertigo (1989-1991)…and then in 1992 had another severe case of waking up from intense vertigo and approximatley a half hour later i began to feel the rocking…wave-like motion and much of it is felt in my head. I feel like i’m moving…not the outside world. What has helped me the most over the years is anti-anxiety medication…i understand it helps to suppress the vestibular system. So many of us who have MAV or mav like symptoms…i soppose this headache like condition affects our inner-ear to some degree. Without medication i would be homebound. Not only do i have the wave-like motion…but my mind and inside my the head does not feel relaxed. There is always a tension like feeling.

Timeless…i can feel the Pultzing like sensation in my head (as if i was having a headache)…but i mostly feel tension and motion and no pain. Guess that is why for many of us Mavr’s this is a Silent Migraine. I don’t have the run of the mill excrutiating migraine. I am one of these people who has never outgrown Motion Sickness…mostly in curvey car rides in mountains, carnival rides that ago in circles and spending time on a fishing boat. Most people out grown this but i understand from my doctor than a significant portion of folks diagnosed with MAV have had a troublesome past with motion intolerance. That is me to a tea!

I was initially diagnosed with Panic Disorder…then a few years after that i was told i have Inner-ear dysfunction w/anxiety and another doctor thought i might have a severe case of Benign Positional Vertigo (which my symptoms seem very similar to some degree). But in 2006 Dr. Robert Baloh at UCLA diagnosed me with “Migraine Equivalent”. I tried Amptriptyline but no help. I have started seeing a new Neurologist at the VA hospital i go to and he wants me to start Topamax…25mg per day for a week and then increase it by another 25mg and so on till i reach 100mg. I am going to begin this med after Thanksgiving. I admit…i’m a little nervous but if for some reason i can’t tolerate it…i will let the doc know and stop it.

I have also had Panic like symptoms…particularly when i feel like i’m going to go into a vertigo like spin at work or a movie. That does not happen very often anymore…but it use to be more common. My vertigo has dropped off considerably over the years but i still have the rocking/wave-like motion. I am taking one tab of Xanex per day and Verapamil.

How did your condition initialy begin? Was there a fair amount of vertigo at first? Have you always been motion intolerant? Along with your wave-like motion…do you feel a mild pultzing like feeling in your head?

Joe

Joe

— End quote

My motion issues started to an extreme last November.

I do not remember being real motion intolerant before that time. But I do not like the Carnival rides, etc so I just avoided them.

Yes I have the pulsating in the head issue most of the time and it can be scary at times and others it is just annoying. But I never know when I am going to have a full attack so my schedule is very limited as that is the main reason I am out of work.

I did have the run of the mill excruciating headaches until I changed my diet and that has helped a great deal. The only time I will get one of those now if I am exposed to fragrances of any kind and then I am done. Nausea the whole nine yards.

I am thinking that the anxiety medication would help with the being scared or paranoid all the time.

The wave like motion is so hard to make others understand as there is no outsides signs that anything is wrong until I reach that high level of anxiety then it is obvious , as my husband said he can see it in my face and eyes when I get to that point.

Timeless…the anti-anxiety medication has helped keep the vertigo episodes at bay. If i didnot watch my diet/stress and discontinued the Xanex…i feel certain it would return. Even the Verapamil helps keep me feeling more stationary.

Do you feel as though your not grounded at times? Do you feel any tension in the head? Sometimes it feels as though my head feels strained inside. If i could just get my mind/head to feel relaxed again…that would be a big help. The more stationary i feel (due to the Xanex and Verapamil)…the better i feel.

Joe

— Begin quote from “Timeless”


The wave like motion is so hard to make others understand as there is no outsides signs that anything is wrong until I reach that high level of anxiety then it is obvious , as my husband said he can see it in my face and eyes when I get to that point.

— End quote

I understand how hard it is to make other people understand what you are feeling when they can’t see anything is wrong. Like you said, my wife seems to be about the only person who can look at me and tell that I am having a bad day and my balance is off. The funny thing is that she is blind and can’t even see me, where as the people that can see me can’t tell. :lol:

BTW, the anti-anxiety meds help me tremndously when I am having a bad day. I used to look at them with the fear of addiction for more reasons than I want to go into here. When it came to being a matter of not being able to function both physically and mentally,
or a chance of addiction, I made the choice of trying to remain a funcitoning member of society. I did some research first and spoke with my doc about it before getting a presription. The doses I take are low enough that addiction “shouldn’t” be a concern. Now, if I were taking it at higher doses on a more regular basis, it would probably be a bigger issue.

I want to see my primary care doctor today and she said that Topimax should be monitored more closel in her opinion. She told me to go ahead and start it very slowly and she would see me back in three weeks. But if I had any problems to let her know right away.

In addition , she gave me a very low dose of Xannax and told me only to take it if I am anxious.

She also wants me to try Lexapro but I am undecided about that also.

And on top everything else I had a kidney infection today when I went to see her. Isn’t life grand.! :smiley:

?? If I start taking them both at the same time , how will I know if the side effects come from one or the other. I have never taken an anti-anxiety or anti-seizure medication so that is why I am a bit unsure.

— Begin quote from “Julie”

BTW, i started with 1/4 of a 25 mg tablet, but soon gained enough confidence to titrate 1/2 a pill a week.

— End quote

Did you gain that confidence all by yourself?

Heather

— Begin quote from “Timeless”

And on top everything else I had a kidney infection today when I went to see her. Isn’t life grand.!

— End quote

I’m not trying to scare you, but are you aware of the higher risk of kidney stones that comes with taking Topamax? I just thought I should mention it since you already are having kidney problems. You might want to ask your doctor about this.

— Begin quote from “Timeless”

?? If I start taking them both at the same time , how will I know if the side effects come from one or the other.

— End quote

You will have a hard time differentiating the side effects if you start multiple meds at the same time. I suggest you start one daily med at a time. If you just take the Xannax occassionally, you’ll probably be able to tell the difference.

I’m glad your primary doctor is working with you. I hope you find some relief soon!

— Begin quote from “Heather”

— Begin quote from “Julie”

BTW, i started with 1/4 of a 25 mg tablet, but soon gained enough confidence to titrate 1/2 a pill a week.

— End quote

Did you gain that confidence all by yourself?

Heather

— End quote

Yes, because I was having no problems aside from a little tingling and minor cognitives. they both went away before the end of the week. I started to wonder why i was taking such small fractions of this pill when it was clearly not causing me any problems. Sure enough, when I started taking halves, the SEs were exactly the same, no more, no less, and went away just as quickly. And with each titration, especially at the lower doses, I felt a very nice improvement in symptoms, so not only was i confident, i was also motivated to increase my titration.

Julie

Timeless Marci is right, it states clearly in the PI sheet, not to take topa if you have any kidney malfunction, its highly dangerous.
wait till you get the kidney stuff fixed first.

jen

— Begin quote from “MarciM”

— Begin quote from “Timeless”

And on top everything else I had a kidney infection today when I went to see her. Isn’t life grand.!

— End quote

I’m not trying to scare you, but are you aware of the higher risk of kidney stones that comes with taking Topamax? I just thought I should mention it since you already are having kidney problems. You might want to ask your doctor about this.

— Begin quote from “Timeless”

?? If I start taking them both at the same time , how will I know if the side effects come from one or the other.

— End quote

You will have a hard time differentiating the side effects if you start multiple meds at the same time. I suggest you start one daily med at a time. If you just take the Xannax occassionally, you’ll probably be able to tell the difference.

I’m glad your primary doctor is working with you. I hope you find some relief soon!

— End quote

Here is a list of what puts you at risk for kidney stones:

  1. Men got them more than women

  2. You’re on a high-protein diet

  3. Family history

  4. Taking other carbonic anhydrase inhibitors

I’m with Marci - if you take Xanax daily, you’ll probably feel better immediately and you won’t know if it’s the Topa or the X.

I take Klonopin, but I was already taking it daily before starting the Topa, so i knew my baseline.

JJ

— Begin quote from “jennyd”

Timeless Marci is right, it states clearly in the PI sheet, not to take topa if you have any kidney malfunction, its highly dangerous.
wait till you get the kidney stuff fixed first.

— End quote

Golly gee, a woman with a brain. :mrgreen:

You must mean Marci,
because my brain is mush…mush … mush…
heeeeeeeee! :mrgreen:

What about taking the Lexpro and Xannax first and then wait until after the kidney issue clears up before I start the Top.

I read the side effects of Top and was concerned about the kidney issue. Perhaps she should look at another drug instead of that one, because I am do get kidney infections quite a bit.

If you get kidney infections a lot (why? underlying health condition?) I don’t know that topamax would be wise.
I mean heaven forbid we are more prudent than the doctors. :smiley:

Lexpro, I know nothing about, but you might Google it to see if it’s contraindicated with kidney issues.
Xanax, well (cough) do I want to go there . . .
I take Klonopin and Xanax. Stupidest &#^@&^$&#$@#&$ thing I have ever done. Otherwise, I’m a pretty damn smart gal.
Seems many start out with an innocent enough reason to take them, then before you know it your body is dependent.
Then the health problems begin, that are nothing short of something Stephen KIng would put in one of his novels.
I can’t speak for others, but if I could do it over, I would never have put that horse crap in my mouth. Ever.

Heather

Heather,

I’m going to have to respectively disagree with you. Xanex has been a god send for me. I shutter to think if this medication was not available. Xanex is no cure all…but since i have alot of motion and it’s felt alot in my head…the xanex helps to keep me more stationary and not scared to work my part-time job, or go to a movie, etc. W/out it…i cannot function very well…and i become panicky with lots of anxiety and irritable. The xanex also subsides the tension build-up in my head. I only take one tab a day on most days. If i’m having a bad day then i may take two. When my condition was worse during the 1990’s i was on a higher dose of Xanex…but in the last 6-7 years i have only been on one tab. It does not take it all away but enough so that i can leave my house…do things and have a life. So i have nothing but positive for this medication.

Joe

ps. the theory behind Xanex is it suppresses the inner-ear to decrease motion.

Well last night I decided to take a half of Xannax pill just to try and relive some of the anxiety and within twenty minutes I was asleep. She gave me the very low dosage.25 and I know how I react to medication so I decided to just take half a pill. I was awaken a few times during the night but I think that may have been due to the kidney infection as opposed to the medication. Not sure. But I will say the motion in my head seems to be better this morning , a little groggy but nothing real bad.

Starting to drink my water this morning and will take my kidney medicine as soon as I eat. I did take some AZO-standard OTC seems to help the symptoms of the kidney infection. Maybe today will be a good day as I have company coming tommorrow and Friday for the holidays. Better than me having to travel.

I take very little medication because of fears that are founded in the fact my Mom became so addicted to them over the years. So I will be very cautious and go very slow with anything I take.

I am going to call my doctor today and tell her I am not going to start the Topi right now and we can talk about that a bit later.

I will try the Lexapro over the weekend and see where that goes. My brother who takes a similar drug said the worse symptoms he has is really dry mouth but nothing much else.

Both my Mom and my brother suffer and have for years from anxiety but they both also have depression issues something I have not really had until all of this started and mine is more from not being able to find out what was wrong and finding out what to do about it . But at this point if this helps the condition then I am ready to try it because life has been $$$$ for the last six months.

To all of you who have responded thank you so much it is wonderful to find a place full of people who understand and can give some personal experience related information.

Makes my day to be able to come here and discuss this with those who have traveled this road! :smiley:

Timeless,

one more thing about Lexapro, it’s common, in the beginning, to have dizzy spells when getting up from a sitting position. (or at other times). They only last for a moment and usually go away completely after a couple of weeks. But i know of a few people who had to go off the med because of them.

Just so you’re not surprised by some extra dizziness - it seems to be a common SE among the people I know.

You’re on a very low dose of benzo. If you keep it that low, you’ll be okay and get some relief.

Julie

— Begin quote from “joseph0952”

Heather,

I’m going to have to respectively disagree with you.

— End quote

I know Xanax has helped you Joe, but for me, Benzos have been the biggest mistake
of my life. Drugs affect people differently. You know that.
The damage to my body is not small.
I may never recover from what has happened to my central and autonomic nervous system.
I think Benzos are dangerous, as do those who have had their lives ruined.
Thankfully there are support groups.
I need to go pop some Xanax now, I’m shaking like a crack-head.
It’s called tolerance withdrawl.

Heather

Heather,

Please don’t misunderstand me…i understand that Xanex or any prescription drug is not for everyone. It just sounded to me that you were discouraging other folks not to atleast try the drug to see if it gives them some help. Some people (like my late brother) could become very easily addicted to valium, xanex, etc…but for myself that has never been an issue. It has helped reduce the Motion that can actually overwelm me and keep me house bound. I only take one pill (0.25mg) daily…which is the lowest dosage you can purchase. Again…i realize Xanex is not for you and you know your body better than anyone on this forum. :-)…But for others…in small dosages can be helplful. I just want to stay sane while i continue to be in this dizzy mess…and if Xanex helps…so be it!

Joe