Feel like heck / goodbye Effexor

Well, Dr. Cherchi thinks that the Effexor is probably to blame for the new sensation I’ve been complaining of – namely, I feel like every three seconds I’m in fast freefall after jumping off a cliff, then unpleasantly buoyed back up again.

So he said to taper off it, basically using a reversal of the slow buildup schedule I’ve been using.

What’s VERY odd is that I’ve lost some of my visual dependence (the original lightheadedness)!

It would be interesting if the Effexor got rid of that and this is just a side-effect it brought along once I hit a certain dosage level. (When I reach zero Effexor, I’m supposed to wait a week and do nothing except continue the verapamil.)

Ideally, getting Effexor out of my system will rid of me the rocking and without the original lightheadedness returning.

I was able to convince Cherchi to give me the generic form of Keppra to try next, should I need a new med. He agreed to it quite quickly, actually. Medically, if I understand correctly, there’s a strong chance that if a medicine worked for a close family-member, it’ll work for another family member. Keppra was the only medicine to work (of 9 we tried) in curing my brother’s epilepsy. But I hope I’ll be free of both symptoms once Effexor’s out.

Considering that environments that were formerly visually “calming” (like dark rooms) don’t affect this new symptom, I suspect we’re not dealing with a matter of visual input any more. It seems like this is a whole new animal. If it’s just Effexor, then getting away from it should end the problem.

In the meantime, I feel like H-E-“double-hockey-sticks.” This sensation is far, far worse than lightheadedness.

Anyone want to encourage me NOT to wish there was a good, high-up cliff somewhere nearby?

Hi George,

My experience with Effexor also had me contemplating ‘high up cliffs.’ Just to say hang in there. As I said it brought on vertigo for me. I will tell you it has taken me a while to get back to baseline since coming off of it, not quite there yet, but have made huge improvements since the Effexor setback and the vertigo it brought on has gone. So I am guessing you will be in the same boat and it will go. Just don’t panic if it hangs around for a bit at first. Also I should say I have been under a huge amount of work stress, so that has probably prolonged the set back and not aided my recovery. It’s taken a few weeks but might have taken a lot less if things had been calmer.

Funnily enough, despite having a bad time on it, the one thing the Effexor did for me was remove my light sensitivity. Like you it gave me bad symptoms I hadn’t had before but got rid of an old faithful. The light sensitivity hasn’t been as bad since being on Effexor, although it is sneaking back in the door.

I can’t promise you, you will get rid of the MAV symptoms you had before Effexor, obviously, but I feel fairly confident you will get rid of the new rocking horribleness it has triggered.

The Keppra sounds like a great idea. Let’s hope it proves to be the magic bullet.

H

Hi George,

Sorry to hear Effexor has not been the drug you had hoped it would be. In fact, it doesn’t seem to help many really (at least not on mvertigo apart from a few lucky people). It makes me wonder where Hain got the 80% figure from because it seems more like a 20% success rate.

I’ll be really interested in your success with Keppra. Sure hope you get a break from these new symptoms.

Best … Scott 8)

I’m starting to wonder about these percentages. 80% seems like a pretty high success rate. Wouldn’t we be seeing more improvement in the people here on the forum trying verapamil and/or effexor? Sometimes I wonder who exactly was studied (and what there symptoms were) to get these figures. Kristen

Most people with migraines, including vestibular migraines, are episodic; that’s probably where the number comes from.

My guess is that the majority of the 80% don’t end up on forums like this.

Victoria

But all those on this forum who have tried it over the last 6 months usually find it to be a dud. You’d think the hit rate would at least be better than 50%.

S

I agree that in many ways we are a self selected group of either treatment resistant patients or the sickest patients? There must be others out there who are diagnosed with MAV, take the medication prescribed, get better and get on with life. I sometimes feel hopeless reading some of the posts and my heart also goes out for all those continuing to suffer day in and day out with these horrible symptoms. As a physician myself, I also find it a little “unorthodox” for a doctor to use percentages in anything. Medicine is an art, not a science, as we are taught in med school. Anyway, I just want to get better and for everyone to get better:-) Hopefully we all will…
Lisa

I have to admit, I’m kind of afraid of the uncertainty of whether my new complaint is in fact Effexor’s fault.

The doctor thinks it is. I doubt MAV would change form out of the blue, after 4 months. And blaming it on the swimming pool experience doesn’t completely add up. I felt great the first few days swimming and then began to feel this terrible new thing, both in the water and out. I haven’t been back in the water in days. So I don’t think that’s what’s happened.

I’m presuming you can’t get MDD from walking in a pool…!

Meclizine/Antivert, diazepam/Valium, and Klonopin have all proved unable to stop the rocking.

When I lie down, sometimes the sensation changes direction, and instead I feel like I’m shifting left and right.

My vision doesn’t actually bobble up and down; I just feel like it.

I don’t know… this all began as I was gradually working up on Effexor but has yet to scram as I taper back down. Also, curiously, I never had problems going upward on Zoloft a couple of years ago. Though the fact that Effexor also ups the noradrenaline and dopamine levels may be the difference between the two medicines.

I’d love to just quit cold-turkey on Effexor and get it out of my system (today is day 1 of really going down, and it’s just 6.25 + 6.25, twelve hours apart), but I dare not try it with the withdrawal risks! I already feel like hell.

Any thoughts please?

Hi George,

Don’t panic, it’s the effexor. Effexor, as I said, gave me vertigo of the like I have never experienced. It came on mostly when I was withdrawing but the drug totally messed me up dizzy wise. It’s too much of a coincidence that you went on the drug, titrated up and then this started.

it’s going to take a while for your brain to readjust as you titrate down and then get off it, but it will adjust back again.

When I was going through the worst of the effexor induced vertigo experience I was convinced I might now be stuck like that forever. I’m not. I am still dizzier than I was before I took it, but like I said, I am under massive work stress, so that won’t have aided my recovery. The vetigo, however, has gone.

It’s the drug, honestly, I’m sure your doctor is right. If you look at the effexor websites, people who have never ever had dizziness, or vertigo, can get it on effexor, particularly when withdrawing. Because it feels like the symptoms are in the same family as MAV, you can assume your condition has taken a horrible new direction. It hasn’t, the drug is messing with you and once your brain readjusts you will be ok again.

H