Finally had a discussion with Hain. After trialling almost everything else he suggested going to Effexor at the lose dose titration schedule. After culling the messages here it doesn’t seem to have the success rate he shared.
Huge decision but I’ve had to go back to a bit of Klonopin just to get upright for part of the day as the rocking is just unrelenting.
Would appreciate any new feelings on Effexor use other than those that have been posted.
Thank you, Sally
Hi Sally,
Sorry you are in such bad shape. I agree, it does seem that so many on this forum have a tough time with effexor, although I have to believe that Hain wouldn’t feel so strongly about this med if he didn’t have success. Maybe, just maybe, those people do so well, that they don’t show up here? Just a thought…
You mentioned you trialled so many others… I know Hain also uses Topamax and Verapamil as first line treatment. Have you given those a good trial and if so can you tell us your experiences with them??? ie, for how long, what happened and what Hain’s thoughts were with regards to your not having success with these meds.
Good luck with the Effexor if you decide to go that route and please keep us posted. We are pulling for you.
Best,
lisa
Hi Lisa,
You mentioned you trialled so many others… I know Hain also uses Topamax and Verapamil as first line treatment. Have you given those a good trial and if so can you tell us your experiences with them??? ie, for how long, what happened and what Hain’s thoughts were with regards to your not having success with these meds.
Actually, Hain said he was getting more and more inclined to start with Effexor since he was having such good with results as were the rest of his “staff.” I trialed Verapamil twice. The first trial was some time ago and I don’t remember the details. The second time was at a very low dose. On the tenth day I could no longer stand up, it was like my balance system was gone. We reduced my dose for a while longer but I just kept getting worse and the fall risk became too great to stay on it.
As for Topamax I also trialled it twice at varying doses. At first I noticed that I felt more stable but quickly started get numbness in my tongue and a vibration in my spine. The insomia set in next and the rocking increased after such hope at the beginning. We tried different doses until the frontal headaches became unbearable. It took 6 months for the tingling tongue to go away. I tried to stay on long enough to get past the side effects but just got nowhere.
I have not made a decision on the effexor yet. You are correct that perhaps we do not hear the good experiences since people move on with their lives. I will let you know if anything good happens. Otherwise, I have been trying to reduce computer use to see if that helps.
Sally
— Begin quote from “Sally”
Actually, Hain said he was getting more and more inclined to start with Effexor since he was having such good with results as were the rest of his “staff.”
— End quote
Lisa – I think what you said 2 weeks back must be true. We are a bunch of freaks. This med does nothing for any of us! Is Hain treating people from another planet?
S
I’m a hybrid MAV/Meniere’s patient (also have a palatal myoclonus and cervicogenic vertigo). I’m on verapamil (240), valium (low doses when needed), and effexor. Daily physical therapy exercises are a must for me as well. I started using effexor about a year and a half ago. I haven’t experienced significant side effects at all. I started with the 37.5 dosage, and stayed with it. Having said that, I really think verapamil and valium have been more effective for me, and I’ll likely stop using effexor. I have my annual appointment with my doc on Wednesday and will talk to him about it. Considering Topamax or Neurontin as substitutes, although I’m not sure if any of those will go well with valium because they effect the central nervous system.
This really is a “moving target” type of ailment. Keep trying…
There’s one woman here (I don’t remember who it is) who had success on Effexor and then switched to Pristiq. You could always PM her with additional questions, I suppose. I don’t remember if she’s currently active on the forum itself…
Make sure you get the XR, non-generic form of Effexor, that’s one thing.
When I worked up on the dose, I took about 5 steps instead of three.
When counting the beads from inside the capsule, notice that some are larger than others. When making up a dose, try to get a mix of the tiny beads and the large ones; the time-release is different by size (the smaller ones release faster, I think).
That’s about all I can think of in terms of advice re: how to best use Effexor.
Next time any of us e-mails Dr. Hain, we should mention that our forum here (I know from talking to him that he’s aware of it) has a near-zero success rate with Effexor. Perhaps we should ask if there are certain symptoms (e.g., rocking) that this drug doesn’t seem to help with? Hain says it works well on visual hypersensitivity but maybe it works better for some symptoms than for others.
Hi George,
Can you remind us of your experience with Effexor as it might be helpful to those contemplating this med? I know you had a whole plan with Dr. Hain with other meds as well. Also where are you med wise and how are you doing?
lisa
Hi All,
Just had to drop in on this one.
I’ve been on Effexor for Geeehs about 8 months.
I’m on 75 mg.
At first it felt like a dream med, then after many months it started to lose effectiveness.
It has helped with a few symptoms, the pain in the back of my skull after an attack (migraine).
I never had full remission from Effexor, but it sure did help me get through the day.
It shoved the rocking into the background and made it bearable.
My Dr prescribed Pristiq 50 mg, to see if it would take me further. I was on it for about 4 weeks and found it eventually made me feel worse, so I’m back to Effexor.
I wouldn’t be surprised if the Pristiq 50 mg was at a lower dose than the Effexor 75 mg and that may have contributed to me feeling worse.
Although they say 50 mg of Pristiq is around 150 of Effexor.
Who knows?
For me, Effexor hasn’t been any better than Dothep was, years ago.
Basically a band aid, but having said that, a very good band aid.
I still migraine twice every day.
Personally I think we are all so different, what will work for one won’t for another; it’s just trial and error.
I can’t say I’m happy with these results; I want more than just a band aid.
Things Effexor has helped:
Being under fluoro lights.
Pain in skull
Phonophobia
Helped rocking a bit.
Depression
I have to say that I don’t like the Brain Zaps I have if I don’t take Effexor at the “exact” same time every day.
Topamax, helped at first, but I stupidly took the dose way too high and suffered the consequences.
I should have stayed put, on the lower dose.
I hate talking about my experiences as it could put others off an effective med.
We are all so different.
Best 
Jen