I noticed that it seems a few of you may have begun using Effexor? Julie? Adam?
Just to update my story with Effexor…
I am on day 5 of Effexor “withdrawal” and it has been quite difficult. I was so pleased to have found a drug that stopped my vertigo but am now dealing with extreme withdrawal symptoms and will have to REALLY weigh my decision of ever taking it again. I did taper off slowly, yet after 5 days of no Effexor, am still feeling pretty significant brain zaps, motion sickness, weakness, emotional episodes and just overall crumminess. I even took a sick day from work today. I know that Effexor helped me stay vertigo free for over 6 months and for that I am thankful. I guess, at this point, I will just have to see how long it takes me to detox in order to determine how “worth it” this drug is.
I know that every person reacts differently to medications, I just wanted people who might be taking/researching this drug to be aware…
I would recommend staying on as low of a dose as possible.
I was only on 37.5. After 3 weeks of tapering from 25 to 12.5 to even 6… I am still having the withdrawal symptoms.
Cannot imagine what I would be feeling if I had been on a higher dose.
Best of luck to each of you.
I know this journey is a long and exhausting one.
Can I ask why you are discontinuing the drug if it relieves your vertigo?
Are you concerned that the vertigo may return upon stopping it?
Is there a possibility that the symptoms you are experiencing now are a return of your condition, rather than withdrawal from the Effexor?
I can certainly understand it’s a rough drug - I’ve been on it a week and I’m at 25mg and not sleeping, feeling dizzier and more headachey, and feeling ill and shaky. I’ll be giving it a good chance to work though.
Hopefully the withdrawal syndrome will run its course soon. Thank you for sharing. I remember that you were coming off of it because you were thinking of having a baby.
I finally “broke down” and decided to try zoloft after a rough flare. Per advice of other posters I’m taking a quarter of a 25 mg, and may only go to 12.5 ever.
My understanding of the withdrawal syndrome is that there is no "cure’ except to resume the drug, or another SSRI–I think some people try prozac due to its long half life.
I’m also taking a sick day to deal with the flare and the new medications, and it just adds to the frustration.
I’m sure our underlying predisposition to vertigo may make the withdrawal symptoms worse.
I really hope you feel better soon.
I visit another board loaded with people who take neurologic medications. When they were polled as to their least favorite (most hated) drug - it was hand’s down - effexor! (I assume due to the withdrawal) (and these people take a lot of different meds, including Topamax and antipsychotics) Some claim that once on effexor, always on effexor.
Yes, they all suggest Prozac to help them get through it.
i’m sorry you’re suffering - thanks for sharing the information. Yes, I have effexor as a “last on my list” med. I would start it with the idea that I would be on it for the rest of my life, unless for some reason I needed to come off of it.
Effexor is so famous for this hellish withdrawal, i wondered why it was such a favorite for Hain. Maybe he hasn’t had to deal with many who have tried to come of (?) Or maybe it’s because this illness is so disabling, it’s worth it.
Not having gone through what you’re going through, at this point, I would still take it. Please keep us posted.
Very interesting that it would be the least favorite drug. What I read about prozac, is that often a single 20 mg dose will allow you to “auto-withdraw” due to its incredibly long half life.
Since so little is really known about MAV and the other chronic vestibular disorders, I start to think that individual physicians start to empirically create guidelines and protocols: I uncovered my old records, and my original neuro-otologist, who was considered a regional expert, believed in 3 mg of klonopin/day. Yet Hain, and others, believe in no more than 1 mg to 1.5 mg.
Furman from Pittsburgh and Newman from NYC use zoloft. Hain uses effexor. I search for studies, and they’re relatively short, yet the duration of MAV is usually variable to long.
That’s why this board, with our real life experience, is so helpful.
Meghann, have you let Dr.Hain know how you’re feeling, maybe he has some suggestions?
Adam, I hope that you start feeling better soon. Effexor was miracle drug for me and, up until about a week ago, I would have recommended it to everyone searching for relief. Actually, I think I would still recommend it… I would just like for people to be aware of what a powerful drug it is. If you are able start it with the idea that you may stay on it forever, even better! I chose to go off of it because I would like work on having children. According to Dr. Cherchi (post doctorate fellow who is working with Dr Hain) it takes 6-8 weeks to get the drug out of your system! Both Cherchi and Hain have told me that often the symptoms of MAV get better during pregnancy due to hormone changes. My concern is just being able to stay normal long enough to get pregnant!!! Then, after pregnancy, I will have to weigh my choices of drugs once again.
Kira, I have not spoken with Dr Hain about help for my withdrawal symptoms. Although I will be sure to mention my withdrawal process at my next appointment… in case he has not had many patients experience it. I have been doing a lot of internet research and it just seems something I am going to have to deal with. I dont really want to add another drug to help me “come down.” I would prefer to be “drug free.” I AM feeling a little better each day! Ive been taking my multivitamin religiously as well as a high dose of fish oil. FOOD is one of the few things that seems to make me feel better! Ive been eating a lot of pastas and breads (craving carbs!) and just might gain a few lbs during this whole process. I know I will get through it. In the meantime, I am just praying that my MAV symptoms dont come back in full force.
Again, I just wanted to share MY experience with this drug so that people can be better educated.
I didnt do much research before starting it… was just desperate for something to work… and am now reading that many people have a really hard time stopping it.
I wish everyone a relaxing and HEALTHY weekend.
I am not sure if you are still using this forum but if you are it would be great if you could respond to this post please
may i ask how you are feeling these days after coming off Effexor? and how long did the withdrawals last?
Also how long we’re you on effexor in total for?
I really hope to hear from you soon, my specialist wants me to start effexor but i am terified of the side effects however if it relieves my symptoms and sends me back into remission i will be so so happy.
Are you still symptom free once coming off Effexor?
Thanks for your time in advance Meghann
Hi Kira, I’m very interested in your experience with Hain. I see alot of people on here talking about him, I’ve seen him and Cherchi multiple times with no help and basically told just try natural meds, kinda feel like they just gave up on me because here I am 15 years later still dizzy.
Strange that. The question to ask is why. Why were you sent away and told to try natural meds. Must be more to it than that surely. Forgive the intrusion but what diagnosis did they give you, if any. I, too, am 15 years in but on triallling meds this last 2 yrs and seeing good improvements. Don’t give up hope.
I’m UK based and must admit to being envious on occasion of people with access to such emminence. Dr Hain’s website seems a migraine/dizziness bible. Proves so useful to lots on here.
PS: intrigued checked out yr original post so now know you hv MAV diagnosis and appear to be extremely med sensitive. I feel for you but still surprised Dr Hain’s team didn’t get more involved.
There is no reason that I was sent away. This is why I ask the question of why do so many people praise that practice on here? The first time I seen him he diagnosed me with MAV. The first Rx I was given was 120mg of Verapamil, when that made me almost not be able to stand because it dropped my BP so much he then gave me Topamax. That didn’t work, and I didn’t go back to him for years. Then when my condition came back with a vengeance I went back given every test that is possible and given another diagnosis of MAV Cherchi gave me Propranolol then Metroprolol then that was all… I was told try natural Co10 magnesium etc. I was very surprised by this as well. I live within 50 miles of what is supposed to be the best around my area and here I am getting worse and worse. I’ve read most people with MAV or Vm are med sensitive, is this accurate? I’ve been researching this plus every other condition that could cause this for 13 years now, and finally this year came to the realization that it is probably MAV.
Sorry to hear that you continue to suffer with this. 120mg of Verapamil is a lot for some people to start with I think. My neurologist said to take 120mg for the first week and then increase by 120mg each week until I get to 360mg! I said “uh… no thanks, let’s start with the lowest dose possible and work up from there”. And he was cool with it, so I started at 20mg (splitting 40mg tablets) and have ramped up to about 100mg now over 5 weeks. Soon I will get on the extended release form of 120mg. I definitely felt my blood pressure drop a bit and was more tired (i’m a skinny guy), but my body seems to be adjusting okay and the headaches are reducing significantly.
I think medication often fails people because of the starting dose is way too high. I definitely think this is what happened to me with Paxil - probably should have been on 1-2mg instead of 15mg! And yes some people are really sensitive to meds, especially when their sympathetic nervous system is on high alert with dizziness! Natural CoQ10 and magnesium does help as well as diet but it takes months of diligence to really gain progress.
Yes. Two valium will knock me out into deep sleep for 10 hours straight. There’s lots of posts on here from people with VM or MAV struggling to manage drug sensitivity. People with migraine conditions have general higher sensitivity than others. They tend to be sensitive to light, noise etc so I suppose med sensitivity is just one more we have to cope with.
Thanks for the explanation about Dr Hain’s practice. They eventually suggested natural remedies once you’d found the more usual prescription meds didn’t agree with you.
Interesting you have now researched and come to the realisation you do have MAV. Maybe now would be a good time to give some of the drugs a second chance. Now you have a meaningful diagnosis you feel you can believe in (which just maybe wasn’t the case when you visited Dr Hain years back) you may find things are different. The mind is a very powerful thing. The titrating suggestion in @ander454 post would certainly be worth following. Perhaps your own doctor knowing yr medical history could suggest the most appropriate drug for you to try first.
It’s funny because my first ENT diagnosed me with Meniere’s disease, gave me Valium and meclizine and it stopped the problem for long periods of time. I was good with Meniere’s disease no problems quick pill fixed done for a couple weeks. Until the problem came back very very much worse is when I finally came to the conclusion that MAV was probably the culprit.
Well that’s a first. A person who had no problem with menieres. That does probably go to show it wasn’t menieres at all I suppose. I’ve known several. Meniere s is very debilitating and long term sometimes eventually burning itself out but it’s horrid. Worse than VM or MAV. Wouldn’t like to have to choose.
Amazing isn’t it. Thought menieres at least was one that could easier be diagnosed than say MAV. Strange then if the consultant still got it wrong. And certainly bad luck on you.
I know weird thing to say isn’t it, at that point I had a completely under control. I’ve never had true spinning vertigo I’ve always said BPPV or visual problem due to the rocking sensation but now it is turned into more of a positional changing turning my head type of falling sensation but have never fallen. What have you been diagnosed with?
Yes ander454 I know about the diet and sticking to it for sure LoL. I’m a big guy and have a low tolerance for the meds. I’m not sure if now the sensitivity is my anxiety after the bad experience with Verapamil. I’m starting Effexor again (2nd) time and my anxiety is through the roof. I’m hoping for some relief!!!
@Dizzyforever Totally get it, I’m the same way - super anxious about trying new drugs. Especially since I got into this mess by trying a new drug. And then I was put on Paxil which made things worse and then I had to come off it. Even after 1.5 years I’m still scared of trying something as benign as new vitamins. Its awful to live life so “on guard” and scared of everything. People tend to believe I’m suffering from an anxiety disorder, and once in a while I do believe I’m borderline, but I work so much harder at anxiety reduction techniques than anyone I know around me and still I struggle most days. We do the best we can given our strange “floaty” and “rocking” world, don’t we? I can’t imagine anyone could really be anxiety-free with these symptoms, its totally natural. I wonder if the CIA has looked into the use of vestibular migraines for torture. Anyways, I hope the Effexor works out for you, it seems lots of people here have success with it.
OMG!!! I couldn’t even take Tylenol for the longest time LoL… what do you mean when you said a new drug got you into this mess?? I am now a strong believer that stress and sleep are my main triggers. And now with my job and buying a new house that turned into a money pit I can’t get a handle on this. What have you been diagnosed with if you don’t mind me asking?
Migraineous vertigo. I know that feeling of self induced dizziness by motion of your own head well.
@Dizzyforever I was messing around with some nootropics and had a really strange reaction with a drug called Methylene Blue. I believe I had a hypertensive crises which lead to a migraine brain overnight. I had just got done training for middle distance (1-2mile) running races, so I think the only reason I didn’t suffer a stroke was that I was in such good shape.
I had similar experience with you. Had a mortgage and a 1 year old, and the roof on my house was rotten and also turned into a money pit. 1.5 years later, I sold my house and I’m renting which helped my anxiety. Also changed my job and spend much more time with family. This condition really forces you to take care of your self in all aspects.