Cured?

I was wondering if anyone has ever heard of anyone being cured of this? I started having symptoms 4 days after my 2nd child was born 9/24/07, wasn’t diagnosed until november, I was started on Verapamil 120, helped alittle, then added effexor 12.5, which helped alot more, then increased my effexor to 25 helped even more, now i am at 37.5 and would say I am 95 % better. has anyone else experienced this? Am I really cured or should I be waiting for the other shoe to drop?

Hi Stefmaz, As far as I know this is a desease we are born with and it is triggered during our lives for different reasons.
once triggerd it goes in cycles through out or lives,
nothing cures it, but we can come full circle and or go into remission.
one the cycle is broken by meds or just our bodies ajusting, it may go away for along time, before it is triggered again .
if your on good meds I’d personaly stay on them.
but your doc may say different.
I’m a newbie on this forum and dont know alot, but I know if I found a med I could tollerate and it worked, there would be no way I’d stop taking them.
unless the side effects were to bad.

one thing I’d like to ask you is, has effexor made you put on wieght?
thanks jen.

Hain did tell me in email that 80% of his practice is Topamax and Effexor - I guess he is on to something :slight_smile:

Way to go! I hope your improvement continues,

Julie

It sounds wonderful–I do think that this condition waxes and wanes but there’s an hypothesis with the dizzy doctors that our ears and nervous systems get overly sensitive, and if you break the cycle, you can really help the condition.

My daughter is doing really well on her medications–and I know that feeling of waiting for the other shoe to drop, but as the years go on, and she attempts more things–long plane flights, etc–the worry grows less.

Thanks for offering some hope.

Seems to come in waves. I’ve experienced some solid improvement over the last 6-8 months—sometimes feeling like I’m teetering on remission----and then it creeps back up and throws me for a loop.

Sometimes, as we know, it can be on the same day. An inverse example of this is today. Got up. Didn’t feel too good. Worked for about 4 hours. Didn’t feel very good while I was working and really paced myself.

Came home…relaxed for several hours. Flat on my back.

Had some dinner. Took it easy…flat on my back for about 45 minutes watching a T.V. program with my son.

Got up…equilibrium felt pretty good.

Stepped outside…weather in the low 60s. Took a look at my English Pointer, got the hands free leash, stretched out, and went for a two mile run. Not too fast…not too slow. Did it in 13:50, with a negative split. Second mile was 8 seconds faster than the first. Weird. I wouldn’t have been able to run a mile this morning because my equilibrium was off too much.

A year ago, I was just starting to run again, and I was slower. The year before that, I couldn’t walk a mile without taking a break because of balance issues. The year before that at this time, I was quasi-homebound and pretty much bedridden.

Still looking for that long, extended period of remission…seems like the Holy Grail at this point.

I’m on verapamil 240mg, and take low doses of valium. Strict diet.

Regarding Effexor, I’ve heard some real positive results, but as you’re probably aware, there’s some side effect issues as well. Careful.

Glad to hear a good story.

Brian,

I certainly hope your cured but i would not get your hopes up too high. You need much more time to find out if you are really on to something that is truly helping you. I would like to believe if you find the right set of drugs for this condition maybe that is all it takes…but there is a part of me that is very cautious and believes all it can take is something to set it off again like a long plane flight or an intense stressful condition.

Brian…you are so lucky to be at 95%…i think i would throw a party!

By the way, what were your side affects with Effexor? I tried this drug in the mid-90’s but felt like a zombie case so within a week i told the doc i wanted to get off it. As you can see i did not give it much time. SSRI’s give me lots of side affects.

Joe

Basically I was told that the effexor would take approx. 4-6 weeks to work, and yes I did feel in a fog and forgetful for a few weeks but eventually subsided. Now I feel normal. The first time I took the effexor I thought I was going crazy, I was jittery and panicky, but this only lasted 2 days. I took valium to counteract this effect and it worked out okay. I have gained about 5 lbs, but not to bad. I don’t care about the side-effects or the withdrawal from effexor at this point, anything has to be better than the hell that I was in!!! Effexor at this point is my friend, and probably will be for the next few years, I’ll worry about it then, not now, I’m just happy that something is actually working! Dr. Hain is the best, without him I think I would be literally dead by now.

Like I said, Hain really seems to be on to something with Effexor, at least in the short-term. I’m not sure how long he’s been using it. It was the Effexor that relieved your symptoms, not will power, correct stefmaz? I love my Zoloft, it’s made all the difference in the world to me, but if all else fails, I may give it up and give Effexor a chance.

Adam said he started it, I wonder how he’s doing on it?

— Begin quote from "Rich1975"

She got well because she followed the advice of her doctor, and didn’t take matters into her own hands, and decide which drugs she wanted to take, and which ones she didn’t want to take, regardless of how they affected other people. There IS will power in there. The WILL to do what is needed to get things done. Some people have a side-effect from a med, and just give up. I did that. I didn’t have the will to get through the side-effects and see what would happen with nortryptiline. Without the will to fight through uncomfortable effects, one cannot give the medication a chance to work to begin with. So I would say it was a combination of the medication, and her WILL to take the medication, that ultimately led to her improvement.

Julie, wasn’t Effexor on your “last resort” list of medications to take?? Why is that? I think maybe you know too much for your own good. I mean that as constructively as possible. I know I am guilty of that as well. I like to learn as much as I can about what’s happening with me, what options are available to me, but sometimes, that leads to nothing but trouble because we can psyche ourselves out of trying perfectly good options that might have worked, had we only given them a chance, because of reading about bad experiences with meds, or the nightmares of withdrawl. If that weren’t true Julie, you would not have put Effexor on your “last resort” list. I don’t feel like searching for your post where you state this, but you know what you said, and you know why you said it. I’m not “blaming the patient” here, as Kira would say, but there is a bit of self sabotage that we can do to ourselves, by taking matters TOO MUCH into our own hands, deciding for ourselves what we should take and what we shouldn’t. I am not surprised that Stephanie got such great results. She has taken medications in the past that didn’t work, but stuck them out each time. Finally, when presented with a new option, instead of refusing to take the med, like I have heard some people here do, including myself, she took it anyway, and reaped the rewards. Bravo to her!! There is something for everyone to learn in that, no matter how long you have been dealing with this or any issue.

Rich

— End quote

Excuse me?!

First of all, I was not addressing you. I was interested in hearing from somebody about their experience.

Second of all - how dare you assume to know why and how I make the choices I make and then judge them. Do you think Effexor is indicated for everyone with MAV? It is not. I work in collaboration with my doctor. We make decisions depending on my course, my indications and my contraindications.

BTW “will” and “will power” are two different things - but I am throwing pearls at swine. What was that Jenny said about not suffering fools?

This used to be such a nice forum. You have turned it into a battle ground.

Julie

Rich this is for you,
Stop with your “finger pointing nastiness”
We are all here to help each other and give “support”
A lot of what you’ve been saying isn’t supportive, it’s
Trolling. So stop it or leave.

And NO don’t even think of using MY private email either.

For you!
jen

en.wikipedia.org/wiki/Internet_troll

Oh my God, someone got me to laugh!
weeeeeeeeeeeeeeeeeeeeeeeel now isn’t that speeeeeeeeeeeeecial. :smiley:

Heather

— Begin quote from "Rich1975"

She got well because she followed the advice of her doctor, and didn’t take matters into her own hands,

— End quote

If I followed the advice of doctors 11 years ago, rather than listen to MY inner voice,
I would have ended up with an infection that went to my kidneys.
My Doc at Mayo was thrilled I ignored ALL THE DOCTORS before meeting him, because they ALL WERE WRONG.
I was RIGHT.

My boyfriend is dead because he listened to his doctor who told him “It’s just Crohns.” No, a-hole, he had colon cancer. Died at 37.
My mother’s doctor said: “lungs are okay.” No, a-hole, she had lung cancer. She’s dead too.

The smartest thing a person can do is their OWN homework and SAVE THEIR OWN LIFE.
Anyone who would think otherwise is a complete MORON.
WE are responsible for our own life, our own well being.
You ask 5 Docs their opinion, you get 5 different opinions.
YOU have to decide what is correct for you.
Not the damn doctor.
My gyno at Mayo Clinic said: Don’t ever let a doctor tell you what you have to do with your body,
you are the one who will have to suffer the consequences. Not them.

Smart woman.

Heather

— Begin quote from "Heather"

Anyone who would think otherwise is a complete MORON.

Heather

— End quote

That’s the word I’ve been looking for!

:smiley:

Heather

Rich,
You were given one chance to come back, and in my opinion you’ve blown it. I’m sick to death of your need to attack others and to state your opinions as fact.
This board is for support and the respectful sharing of information.
The people who post here have suffered enough.
It’s just amazing how disruptive and painful one person can be.
Kira

There have been some really meaningful posts in this thread–about people who respond and others who have good and bad moments in their days–those are incredibly useful to read. You obscure the meaningful, helpful posts with your diatribes.

Enough is enough… sorry about this guys