Guess Who Wants Me Back on Effexor (XR)

Dr. Hain. We’re on a generic-Keppra trial right now though I think he only wants it to run 3 weeks (unless it helps by then). Then, either now (on top of Keppra) or after (by itself), he wants the frightening drug in, but this time two changes - the brand-name form, and the XR (titrate up by counting granules…).

I admitted fear of the drug but he seems hopeful based on the fact it’d started removing visual dependence (while seeming to add more motion sensitivity) and he thinks it’s worth another go. Well, I’m a little scared of that idea! I wonder what will happen on Effexor and if it holds any potential for the rocking sensation (just take that one - I could live with the rest…).

The scary drugs just pile up. If Effexor fails or causes trouble again, we may dump it for amitriptyline. Another path is that failing all of the above, Topamax will probably be next in line.

exactly what drugs have you tried already and for what duration & dosage?

MikaelHS, here’s the Parade of Medicine Failures:

Antivert (before we knew it was MAV) / 25 mg - made me sleep

Verapamil 120 mg / ~5 weeks - did nothing

Verapamil 180 mg + Effexor (up to 25 mg, never reached target 37.5) / ~3 weeks - verapamil did nothing, Effexor made more dizziness

Inderal (up to 40 mg, never reached target 60) ~1 week - made dizziness much worse; started rocking sensation

Diamox ?? mg / ~3 weeks - did nothing

Serc (betahistine) / 48 mg day / ~1 week - no benefit or made vertigo slightly worse

Neurontin 600 mg day / then 1200 mg day / then 1800 mg/day / ~5 or 6 weeks - did nothing

Keppra (on now) - 1000 mg/day / 4 days so far - too early to tell

Hi George,

Thank you for sharing your med history with us. I was wondering if you can share a bit of what Dr. Hain says to you as to his thought process in your treatment. Is he confident in finding a med? How does he explain his thinking for choosing certain meds and the order and anything else you are willing to share with us? Why is he choosing effexor again when the first trial clearly caused you to worsen (I know he is changing to the ER formulation)? Also, did you not have rocking before the inderal? Why Ami before topamax? Sorry for so many questions, but I am just trying to figure out why all these “great docs” choose all these meds in different orders!

Good luck with your current trial!

Best,
lisa

I am having a tough time on the current trial. I think the Keppra is making me very, very tired (I wake up and feel like I have no energy). I’m 5 days into it. And, my arm began shaking like crazy (tremors) earlier today during physical therapy. I feel like I haven’t slept in a week.

Dr. Hain didn’t give exact details as to why he thinks Effexor may help. I suppose he was intrigued or encouraged by the one benefit I reported (visual-vertigo reduction). I don’t know if some specific drug in his practice is favored for motion sensitivity or for rocking though he said that Elavil (amitriptyline) is one of the ones that would likely work in favor of reducing motion sensitivity.

He said if Keppra fails it can be replaced with Topamax. If Effexor makes trouble again Elavil can replace it. (He said “You can’t be on both Keppra and Elavil; you’d sleep all day.”) Either one or both of these medicine-alternatives is possible.

Amitriptyline doesn’t necessarily come before Topamax in my drug-trial order.

He said they usually reserve Keppra for after other drugs fail but that since I chose to start with it (I liked its lower SE profile, etc) over Topamax, it deserves a fair trial.

Rocking vertigo seemed to begin with Inderal. A more vague rocking-like feeling was already there but Inderal amplified it like nobody’s business.

Basically all I really know is that conventionally he’d start with Topamax but I chose the other one to go first. The Effexor is harder to say. I guess he still thinks it may help current symptoms. He knows I’m a bit apprehensive about it but there has to be SOME reason he wants to go back to it, since he knows I had troubles on it.

George - I’m sorry you’re having drug side effects. But, sadly, I think that we have to deal with this side effects until our body adjusts. It’s hard work to get better, but what choice do we have? these drugs are not easy, but this illness is daily torture. Just wondering what makes Hain use amitriptyline over nortriptyline. do you have any idea? from what I heard ami has more side effects than nort. perhaps, he thinks ami is more effective. who knows?
good luck

I think Dr. Hain wants Effexor b/c he’s seen it work so well for a lot of people. I take Librium (long-acting benzo) with amitriptyline and 75mg/day Effexor XR. I started with 37.5 mg and noticed some improvement, so I increased to 75mg. I’ve definitely had more good days and fewer headaches since starting the Effexor. The first couple of weeks on the 75mg, I wasn’t sure I was going to stick with it, but I’m glad I did.
Nortriptyline didn’t do anything for me, but the amitrip does help (and the combo with the Librium is wonderful).
My neurologist told me not to open the XR Effexor capsules b/c it would mess up how your body absorbs the drug - the drug level would change during the day. Maybe try the whole 37.5 mg pill and try to stick with it for at least a month?

dizzymingo - thanks for that info. Just wondering what dose you got up to on Nortriptyline before deciding that it wasn’t helping. It might be my next drug, so I am curious. do you know why amit was more effective than nort?
Lisa

I’m about 10 days into Keppra and nothing out of it but some fatigue. OK, it’s early days, but after Hain said “3 weeks” constituted a fair trial, I’m not so sure of my own ideas. I think maybe I talked myself into wanting it when Topamax is obviously a big gun / first-line drug in Hain’s experience. It probably has more potential.

OK, this question primarily for Scott, but maybe anyone who wants to comment on it…

As the post says, Hain would like to see what happens with me on brand-name Effexor XR. I am, naturally, a bit afraid of that.

The one thing I was thinking about is that Effexor is one of the dual-mechanism (SNRI) antidepressants, but with much greater reuptake inhibition of serotonin than norepinephrine. Contrarily, Elavil (Hain’s second-choice antidepressant) is the opposite – its effects are stronger on norepinephrine.

I am seeking comments about one drug vs. the other. Is there any info known about how serotonin is “involved” in migraine vs. how norepinephrine is?

I just keep wondering (when I got on Effexor) which of those chemicals lifted the one symptom (visual vertigo), and which one was responsible for ADDING symptoms. If I could sort it out, I’d have a better feel for which drug (if either one) would be more helpful / less problematic. I have no idea what to expect might happen on Effexor at this point (either by itself or as an add-on to Keppra).

It’s just so confusing trying to parse out what the serotonin does vs the norepinephrine vs the anti-cholinergic stuff (amitrip, which of course does several more things). I thinks it just comes down to trial and error and the treating physician’s personal experience with these drugs and MAV patients. I only got up to 30 mg on the norepinephrine (for about 6 weeks) before I quit. All I got were side effects, so I was very skeptical with my physician wanted to do amitriptyline + Librium (chlordiazepoxide). I had to tell myself that I just paid her nearly $300, so I was going to try her drugs. I was very disabled with MAV, so I think I just needed multiple drugs to achieve any progress.
The Lexapro was a failed experiment - no good at 5 mg and worse at 2 attempts at 10 mg/day. I was again skeptical when my physician suggested Effexor, b/c I thought “well, we already know that serotonin re-uptake didn’t work”. But I figured she’d already gotten my life mostly back on track, so I’d try her drug. Also, when I started, I took the brand to give it a fair trial. If it made me feel worse, I didn’t want to wonder if it was b/c of the generic. I’m now taking the generic 75 mg/day Effexor XR, and it seems okay, for me at least.
I still have dizzy days, but I’m able to function well. I will never cease to be amazed how my physician and these drugs gave me my life back. I thought I was a hopeless case. I also still have bilateral vestibular hypofunction, so that comes with it’s own off-balance strange symptoms. I guess I’m at my “new normal”. People at work think I look normal; they can’t tell when I’m having a dizzy day (like when a weather front blows in or I eat something forbidden like Chinese food). I just take the elevator and escalator more than the stairs, which takes a little bit of explanation sometimes. and those damn fluorescent lights…

Please, please keep fighting and trying new drug combos. You’ll feel like a boxer in the 1000th round but believe that your life can and will get better.

oops, I meant 30 mg nortriptyline, not norepinephrine. Good thing I’m not a pharmacist :slight_smile:

George,

I’m sorry to hear you are having a hard time on these drugs. I been having the same side effect on all the drugs you have like Effexor, Verpamil etc. I’m currently taking 40 mg of Celexa and I feel 50% on that. I added Neurontin to the mix and been on it for a week and a half, 300mg/day. So far I don’t feel anything on it and I will increase to 600 mg tomorrow. I hope it works, but I’m not sure.
Keep me updated with your Keppra trial.

Best,

Emma

George,

Dr. Hain also put me on Effexor, which did absolutely nothing for my dizziness, only side effects. Best wishes that it helps you.

about Elavil:
Approved by the FDA to treat depression in 1961, this drug performs a relatively mild reuptake inhibition of norepinephrine and moderate reuptake of serotonin. Its affinity for histamine receptors is what makes you sleepy and hungry. Its strong affinity for acetylcholine receptors means this is a true anticholinergic. So all that dry mouth, nausea, headache, constipation and crap you get when you start any psychiatric med, that stuff is more likely to stick around with Elavil (amitriptyline) than most other medications. If this med is indicated, or recommended, you may want to inquire about Pamelor (nortripyline). Pamelor (nortripyline) has somewhat stronger norepinephrine and weaker serotonin action, so mileage will always vary.

this is from crazymeds.org

Of course Effexor (venlafaxine hydrochloride) has to be complicated about it, it can’t just work on everything all at once from the beginning. Oh, no. First it starts to work on your serotonin. Then somewhere around 200 mg a day it starts to work on norepinephrine. Then around 300 mg a day it starts to work on your dopamine. Mileage will vary for each individual, and there’s no guarantee on getting all that much dopamine action. Of course as you up your dosage to get to the next neurotransmitter, you keep pushing the previous neurotransmitter, whether you need more action on them or not.

I appreciate the info. I think crazymeds is useful to a degree but I don’t know how reliable it is. That’s their own fault – whoever writes the content, I think, has had one too many “crazy meds” himself. Some of the way it’s written ranges from crude to just plain dumb. In my opinion, the site owner has completely shot down any credibility he might’ve had, mostly because he writes in a totally unprofessional manner.

That, and Wikipedia’s info about Elavil is completely contradictory to what crazymeds says, but Wikipedia cites a source. Still, who knows who to believe?

But, this is a criticism of Internet sites / the Web in general, not of you or your post. Like I said, thanks for the info. Nice of you to try to help.

Hello all,

I have to say that I was always confused with Dr. Hain’s use of Effexor at low doses versus SSRI’s although I understand he does state he gets excellent results. From my understanding in medical school, residency, and well as in my own personal practice of medicine, Effexor does not hit the other receptors besides serotonin until you get into the higher doses… much higher than those he uses for migraine prevention. So, I have to say, as a physician I agree with crazy meds, but I cannot dispute the results that Dr. Hain says he gets with using Effexor.

Lisa

Lisa, I think Hain assumes there is some other effect on the brain from Effexor that we currently don’t know about, and that this effect is what actually helps the migraine.