I have suffered from MAV for about 15 years and gotten to where I’m managing it most of the time and have several normal days per week. My rough days are even manageable, I’m heavy-headed and foggy and have gentle rocking sensation but can usually power through. All in all I think I’m about 80% of normal.
However, I still have triggers and spend several days a month in dizzy mode. For example, it would be nice to have one single family vacation where I’m not lightheaded and dizzy the entire time due to all my triggers converging at once - traveling, weather, motion-sickness, swimming, alcohol. all the things.
So I started searching the forums again after many years, and based on my research I want to try Effexor. I’m extremely visually triggered like even reading a book or watching my kids on a trampoline. I hear it’s the right drug for that kind of trigger. My neurologist, while not being familiar with Venlafaxine for vertigo, has prescribed it regularly for migraine, so she was on board with trying Dr. Hain’s approach to this drug and titrating up from a low dose.
So here’s my question - my doctor put me on immediate release, which I’ve read is NOT the one to do and has way more side effects than extended release. But when I called and asked for the extended release, she was confused saying that I asked for the lowest dose and the immediate release has the lowest possible dose (25 mg).
I told her that I’ve read extensively on here that getting XR and cutting the pills open and counting the beads is the recommended approach. The nurse who called me back was so irritated at me telling me that’s absolutely not a thing and certainly not recommended and I should be following my neurologist’s advice, not some other neurologist’s protocol. They said they would switch me to XR once I reached 37.5 mg.
Sooo do I try the immediate release and just hope for the best? I’m really scared to try this given all the horror stories, so now I have extra anxiety that everyone on these boards says not to do it with IR. Do I just stay where I’m at with management mode? or do I give it a try and hope this titrating phase doesn’t last super long?
From reading your text seems there’s a bit of a breakdown in communication here somehow that needs rectification.
If I’m reading your script correctly the neurologist has agreed for you to try Venlafaxine XR and using Dr Hain’s protocol which intrinsically necessitates having been prescribed the XR version to titrate up slowly from a low dose. Seems your doctor thinks because you asked to start from the lowest dose that the immediate form being only 25mg the better option. I’d suggest you print off Dr Hains information and take it to your own doctor to read so she can appreciate your intention. Hopefully that should solve the problem. Another option would be to go back to the neurologist and ask for an amended post-consultation report that makes the situation clearer however I suspect that won’t win you any favours with your own doctor long-term and in law here in the U.K. at least your own family practitioner because they are ultimately deemed responsible for your well being can refuse to comply with any consultant’s recommendations if they deem fit. I’d doubt your current experience is anything other than the result of a misunderstanding so I’d hope a print out or e-mailed link should solve the issue.
Technically the nurse is correct. The producers of the drugs positively condemn any interference with the drug medium. Doctors opinions vary too. Shame really I cannot ‘prescribe’ my own GP to you ‘on loan’ because interestingly she says she never uses the immediate release form for anybody starting everybody straight onto 37.5mg.
I did send her information from Dr Hain that I had researched on the website. However it doesn’t actually say anything about specifically using XR and doesn’t mention starting at a lower dose by cutting it open. I gleaned that info from reading all the posts on this site of people who had worked with him. I suspect even if I could find that, my neurologist disagrees with doing that. I think my only option is to try the IR and then switch when I get to 37.5.
I guess I should clarify also that she’d be happy to start me on XR 37.5 mg like your doctor but I requested to start lower than that and titrate up to it. She says the only way to do that is on IR at a low dose (the 25 mg tablet can even be broken to start at 12.5 and go up).
I was on immediate-release venlafaxine for about 3 weeks. Not to scare you, but it made me feel pretty horrid, honestly. My vertigo and migraines got worse so I quit taking it. But everyone’s biology is different, so don’t take my experience as a reason not to try something that could help.
I wonder if you could tell your doctor you’ve changed your mind and would like to start on the 37.5 mg capsule? Once you have the pills, it’s up to you what you do with them. So not totally a lie, just an omission of detail.
Good point! What dose were you on when you felt bad? and why do you think there is such a difference between how the two affect MAVers?
I felt progressively worse as I titrated up from 12.5 to 37.5 mg, so I was pretty sure the drug was the cause.
From what I have read, venlafaxine has a very short half-life, so it is metabolized quickly. With the IR tablets, you have inconsistent levels of the drug in your body (peaks and then lows as it wears off) which is not ideal for a migraine brain. The extended-release keeps blood levels pretty stable throughout the day, and stability = fewer side effects and better migraine control.
Oh but it does……?? In full detail …
Hain & Venlafaxine Pill Cutting
Absolutely agree. If the difference between Venlafaxine IR and XL is anything similar to that between Propranolol IR and MR (modified release) its chalk from cheese as they say. Phenomenal. However splitting a pill or opening capsules of any sustained release drug must destroy its ability to distribute evenly through the 24 hours because my understanding is that the coating is largely responsible for that action. It could help explain why people suffer so many side effects titrating up on Venlafaxine maybe. It’s such a pity smaller doses aren’t commercially available. No doubt profitability is the root of that one for sure.
This is actually exactly what I sent her, but I missed that it said XR specifically. She doesn’t care anyway since they don’t endorse cutting them open.
Now this is interesting. I hadn’t heard XR comes in tablet form. Thanks!
Not sure how that could help you really but glad you found that info interesting. Smallest dose in tablet form is still 37.5mg and it’s not recommended cutting it because the outer coating is part of the extended release mechanism same as the capsule. Incidentally many commonly prescribed medications in tablet form have a gastro-resistant outer coating to reduce digestive issues.
Here in the U.K. procedure is to only cut the IR version and then move on to the XR once 37.5mg has been achieved. See @jojo65 posts on here for example. You certainly raised what must be a commonly occurring question. From my experience with the medical professional compared to those of posters from the US I long ago came to the conclusion ours are far more conservative. They adhere strictly to NICE guidelines and have far more fragile Egos. You need to find an exceptionally open minded GP before you’d dare present him/her with info printed off the internet and even appearing to suggest some adaptation of your own treatment. I’ve a feeling in many practices you’d been told to go find another practice to sign up with. From your original script I’d got the impression the consultant had already agreed with you adopting Dr Hains protocol. In the circumstances you will probably have to just titrate up on the IR.
I’m on immediate release. Via Dr Surenthian. Changed my life as a sufferer of 20 years.
I built up to 112.5 mg AM and the same PM.
Got me to 95% normal with the occasional flare up. I can certainly give this med the thumbs up. Takes time, build up slowly as your neuro recommends and I had minor side effects. So minor I can’t remember what they were!
That’s amazing to hear. What dose did you start at? I hadn’t seen much about the IR and from what I can tell Dr Hain doesn’t often do a higher amount than 75mg on this drug. My doctor was fine with trying Effexor since she uses it anyway for migraine and was basically like sure if you want to try it, go for it (I also have the chronic headaches part of this disorder) but I’m trying to get as much info
as possible about using it as a vertigo treatment since my doc wasn’t familiar with that.
37.5 mg x Am and PM. It helps lots but I have a yearly flare up. One now! That takes a few weeks to pass but it’s not a severe as pre meds. If I could cut out stresses I expect this would be even less.
I wish you a success.
Go with it and don’t give up.