Five Days out to Sea

Hi Everyone,

I decided to wean off the Topamax last week so my Neurologist gave me the instructions on how to do it. Well i am very sensitive to medication and i guess i weened down to quickly (following dr.'s instructions) and after the 2nd day going from 50 mg to 25 mg i felt like i was out to Sea in Choppy Waves…like Deep Sea Fishing. I decided to increase the Topamax up a little and hoping that will help stabilize. I have been getting support from a number of people from the forum including Rich, Brian, Scott, Julie and Jen…privates messages and i’m very grateful. I have been really struggling with the Waves of Motion and also the right side of my head feels very Compressed and Strained. This is nothing new because whenever i have real bad cycles like this…this is what happens. For example… Something as simple as driving as a passenger in a car…and if the driver is someone who BRAKES a lot…that bring on lots of motion for me for a few days. Anyway…this is the first time i have ever been swamped with this much increased motion when weaning down on medication. It’s like i feel this motion/energy in my head Bobbing around in my head going in various directions. I’m the one that’s moving…you can bet on it! It’s not my environment…it’s me!!! Trying to work my part-time job has been very difficult the last few days. I had one good day…on Wednesday but then i became confident and stayed on the computer too long Wednesday night and did not get too bed till late so Thursday i suffered again. Feel so fragile! So i just have to pamper this condition for a while…less time on the computer, really watch the time i go to bed…make sure i get enough sleep and it’s about the same time every night. I normally only take one tab of Xanax daily (anti-anxiety med) to help with the motion and calm the strained tension in my head but the last few days i have had to resort to 2 tabs per day.

Also…to add more drama…the Neurologist who i have only seen once at the Veteran’s Hospital (this is the only health care i have since i only work part-time)…he is begining to question my MAV and believes my symptoms mights be Anxiety related. He has only seen me once and prescribed only Topamax for it. I get the feeling he is giving up on me. Our next appointment is March 11th. If it does not work out between us i will ask to the Veteran’s Administration to be seen by a private doctor outside the VA Hospital.

What a Challenge this condition has been for 16 years!!!

Thanks for letting me vent.



I’m sorry you are having such a rough time. I had the opposite happen to me when I stopped Topamax. I felt like my life was beginning again. I unwisely stopped cold-turkey because after skipping just one dose my brain fog began to lift. This is not recommended due to an increased risk of seizure, but I decided to take a gamble because I was very anxious to get that crap out of my system (sorry for those who have found it helpful), but I consider it to be an evil, evil poison to my system. :twisted:

Anyway, I hope you find some relief soon, Joe. This has been such a long, drawnout saga for you. You deserve a break! My take on it from reading your posts is that you most likely have MAV with anxiety. Both should be treated in order to break the cycle.

Take care of yourself. You are in my thoughts.


Joe - You are in my prayers. I have never tried Topamax, but it was suggested to me. After reading different posts, and my sensitivity to medicine, I decided against it. Maybe after weaning off the Topamax, I understand it can take a while, things will get better. Perhaps that drug is not right at all for you. I can’t remember if you said anything about trying Verapamil? I am sorry to hear about your doctor situation. It seems as if anxiety is always present with MAV. I don’t think your doctor should dismiss the MAV. You are in my thoughts and prayers. I know it seems impossible at times, but have faith that you will get better. Faith and hope are the only two things that have gotten me this far, along with the great support from all of you guys!


Hi Marci & Nance,

thank you both for your thoughts. Marci…so you stopped topamax cold turkey? I heard two stories…that there is a risk of seizure if your already prone to seizures and if your not prone to seizures you will not have a seizure if you stop abruptly but could end up with other symptoms like severe dizziness or a bad headache, etc. I weaned off fairly slowly and i guess it wasn’t slow enough and then “boom”…the Waves of motion began to start and overwhelmed me…because of it. But then you stopped the medication cold turkey and felt so much better. I am scratching my head? How could this be? We are all so different. We both got different reactions. I am now having to take baby steps to get off this medication.

Nance…i am on Verapamil…was on 240 mg (two tabs per day) and it helpled a little but not much. In fact…i weaned it down to 180 mg (one tab a day) and there is no difference). As far as the anxiety…i have always been a little anxious all my life but nothing severe. I am more anxious now because of this nightmarish MAV! I’m going to try and bring my partner with me to my neurologists appointment on March 11th. I have this funny feeling the doctor is really going to stick the anxiety story to me and try and convince me i have an anxiety issue. I really don’t buy this at all. The anxiety in my estimation is the secondary cause. You are right…i can never lose hope!

Yesterday i felt a little more stationary…making sure i get 8-9 hours of sleep every day…because prior to this sometimes i would cheat and only get 7-8 hours. Plus i’m not working on the computer as long…just cutting back on things that i think will aggravate this ongoing motion.

Thanks again…


Hi Joe,

Print this paper out and take it to this neurologist who assumes you “just have anxiety”. Tell him to sit down and educate himself on MAV. The entire physiological mechanism of how this CAUSES anxiety is spelled out in this paper.

The link to the full article is at the bottom of the page.

How you feeling today?

Scott 8)

Hey Scott,

Thank you so much for the important document. I will definitely print it out and take it with me to the doctor next month.

Something really interesting happened last night…a friend came over and i was still having quite a bit of wave-like motion so i asked my friend if he would massage the right side of my head because that has always been the troubled area where most of the compressed and strained tension is and he said sure. So while watching a movie he began to massage the right temple and then moved his fingers further to the right to the mid-section of the right side of my head…and i told him “that is where the tension/soreness is”. He replied back…“joe…i feel a little knot or like a slightly rounded ridge”. It could be just the way my skull is formed…but he began to massage the area because that appears to be where some of the symptoms are located. AFter the massage was done… the motion calmed down to a lesser degree and the following morning I felt less motion but still not 100%. I don’t want to jump to conclusions but it was interesting how Massage on the effected area seemed to give me some relief. My left side -mid part of my head is flat…but my right side mid part of my head rises up a little and it’s a little rounded area. It does not appear to be a growth…i don’t know if it’s scar tissue or something else?? I have had one MRI over the years and another exam similar to an MRI (forget the name of it) two years ago…both turned out negative. I will show this to the doctor when i see him.

So i believe i’m making some progress…but still taking it one day at a time. If i do well this week i will ween down the topamax to 25mg …maybe on Friday.

Thanks for checking in on my Scott.


Scott -

I am printing out that article you sent to Joe on anxiety and migraine. I definitely want my family doctor to see this and my husband. I am just wondering if the Effexor would have been a better choice for me than the Verapamil. Thanks for the info.

Joe - I am glad that you are feeling alittle better. This article might help your doctor to understand that anxiety is secondary to MAV. It sounds like that massage did the trick! Do you think that bump your friend felt could be a tight muscle in the back of your head, up from your neck? Or is it up too far to be a muscle? Just wondering.
Glad you are feeling better!!! :stuck_out_tongue:

You are in my thoughts -


Nance…yes…i’m hoping the article will help when the doc reads it.

The area that was massaged was not the back of my head…it was the right side of my head (in the middle area). It’s no cure…but i feels like the real intense motion has calmed down. So if this continues i will be able to ween down on the Topamamx even more by end of week.

Thanks for thinking of me.


Joe -

I have a question for you. I really strayed from my “MAV” diet this weekend. How long before I feel the effects of that? Do the symptoms come back within hours or days? It is Monday , and I started feeling vertigo last night before bed. Do you think I am in the clear now? I feel some “elevator” feelings today and alittle motion. I am getting back to my diet today. I was so bummed last night. I sat on my couch and stared out the window wondering, “why me?” It seems like everyone else is out enjoying themselves and not having to worry about stupid MAV symptoms. I am better than I was, thank God for that. I keep trying to have faith and hope, but sometimes, it is so frustrating, ya know?



Hi Joe,
I’ve been staying away from the computer myself lately as it triggers my migraines,
so does my big screen tv.
sorry you’ve been having some nasty symptoms after going off topa.
I was like Marci, and was well after ditching it, almost instant reliefe of the nagging side effects.

Joe I’ve been on effexor, I’m now on 1/2 of a 37mg tab, and things are improving.
some days I’m completly migraine and dizzy free, I never thought I’d see the day, it really is worth a try.
all the best joe
thinking of you


— Begin quote from “jennyd”

Joe I’ve been on effexor, I’m now on 1/2 of a 37mg tab, and things are improving.
some days I’m completly migraine and dizzy free, I never thought I’d see the day, it really is worth a try.

— End quote

Hi Jen!

Are you having any side effects from Effexor? I keep toying with the idea of trying it, but I’m afraid of potential side effects and the possibility of becoming dependent on it. I want to learn about as many differenct experiences with it as I can before I make a decision. I feel like such a chicken, but the Topamax experience has me a little gun shy.



— Begin quote from “jennyd”

… I’ve been on effexor. I’m now on 1/2 of a 37 mg tab, and things are improving. Some days I’m completley migraine and dizzy free. I never thought I’d see the day; it really is worth a try.

— End quote

Hi Jen – great to hear! Have you had any feelings of the med revving you up or causing increased anxiety? Sleeping ok?

Scott 8)


What did you eat or drink that brought back some symptoms? Sometimes it has to do with the amount…for example if i have less than a 1/2 cup of coffee per day and use Folgers Lite which is Half the Caffeine i am generally ok. But if i were to go back to 4-5 cups of regular coffee per day i am nearly certain Vertigo would return and i’m definitely certain the Motion would increase very quickly…within minutes. Chocolate triggers very quickly too. A snicker bar might not be too bad but a few pieces of See’s candies would definitely bring on some nasty symptoms. Alcohol also increases the motion very quickly. So i would say (for me) the symptoms come on within minutes…after eating a good size slice of chocolate cake or strong cup of French Roast Coffee, etc.


Hi Scott and Marci,
No bad side effects, nothing, sleeping like a baby.
I find this effexor feels to me like when I take a valium or xanax,
It lowers all my symptoms to a dull roar, and as I said it has taken away the sensation of the fading out after the migraine, I’m more present every day, I can think now.

The first few days, things felt a little surreal, but that’s gone now, heck thats how my migraines make me feel anyway.
The weakness has gone in my legs; I can walk around much easier, I have a spring in my step.

Marci, you sound sensitive like myself with meds,
other people have tried effexor, by taking a 3rd of a 37mg capsule, it knocked me about too much,
so I took it even further.
if you try it, don’t take the whole 37mg pill, take around 10 granules and work your way up every day by 5 granules, if tolerated.
If that nocks you about to much , stay on it for 2 days or until that dose feels normal , and then up it the next day.

I had No nausea, doing it this way.
And Marci, I don’t know if you remember Rich and Julie, mentioned that Dr Hain said, staying under the 37mg’s of effexor should stop any addiction, and that Dr Hain himself said, most people come good on only 37mg, there is no need to go higher.
oh and Scott, No revving up at all.

I just wanted to give Joe some hope, I know what it’s like, having to ditch yet another med.
Very depressing indeed.



Glad to hear that Effexor is helping you. Have you heard about the cousin of Effexor called Prestiq? Have you ever thought about trying this? Julie is using this med and having good results. It is time-released. I am considering this for my next med.


Hi Joe,

Yes, I knew Julie had started using Pristiq a few months ago with good results.

I think I remember her saying her body didn’t metabolise the Effexor, so she swapped over to Pristiq.

I believe the lowest dose is quite high, much higher than the lowest dose of Effexor, and you can’t cut or divide the tab from what I’ve heard so it would be a nightmare for someone wanting to start it slowly. And if it didn’t work, no one really knows how to get off of it apart from swapping it to Effexor and tapering down that way.

Sounds like a bit of a nightmare trial to me.

I believe Julie is on around 50 mg of Pristiq, which is like being on 100 mg of Effexor.
I’d be a mess at such a high dose of Effexor, I’d imagine you’d need lots of benzo’s to combat the nasty side effects.

So I’ll stick to my Effexor for now.


Joe and Jen, I thought I would chime in on Effexor. I have been on it for three weeks now, tritating up from 1/3 to the full 37.5 pill this past Sunday. So far, I have no improvement at all. I think I am actually a bit more unsteady, dizzy. I had some side effects at first (nauseous, brian fog, clentching teeth, some trouble sleeping) and then when I increased but nothing that was horrible. I am just getting a bit anxious for this to start working, or hoping that it will work. Dr. Hain said he may increase it to 75mg or switch me to the Pristique if I have no results in the next two weeks at the 37.5 mg level. He also said he would consider trying either Verapamil or Propanol, although it wasnt clear whether that would be in addition to the Effexor or instead of the Effexor. Jen, that is great that you are already seeing results - I wish you the best and hope that I will catch up to you! Ben

Thanks Ben,
That really sucks, sometimes meds start to work after a few months, let’s hope it will for you.

I’m already on verapamil, avapro, and vit’s.
all of which are helping a little.
If you dont mind me asking , why would Dr Hain want to try the pristiq, does he believe it’s better than effexor for some reason?

all the best jen.

Hi Jen, Dr. Hain made the suggestion based on how the body processes Effexor versus the Pristiq - he said that the delivery of Pristiq may be better for some people because it does not get processed by the liver where it could lose some of its effectiveness. I know that Julie has had success with it and that may be why. I am a little leary about Pristique because it is so new, although I am very med shy anyway! I plan to hang in with the Effexor at 37.5 for another two weeks and then follow up with Dr. Hain … I will keep ypu posted and I wish you continued success with your treatment. Ben

Thanks Ben