Just wanted to chime in with an update: The Effexor is working!! 
I’m on 75 mg daily & have only had one slight headache in the past 2 weeks. No dizziness at all. If I don’t eat something ‘filling’ before taking the Effexor, I get a little nauseous, but it doesn’t last. Mood swings have stabilized pretty much. Life is better.
thats awsome Joy,
some one was saying if it works, stick with it, they say if it works and you decide to ditch it for what ever reason,
you wont have the same results the neXt time around.
be well.
jen
Thanks for filling us in, Joy. That’s GREAT! Keep us posted - we love success stories!
Hi Joy,
Glad to hear the Effexor is helping you. I took various SSRI’s back in the early to mid 1990’s including Effexor…but they did not give me much help. At the time the doc was thinking i had “Panic Disorder”. I don’t remember the dosage of Effexor…but it was similar to the side affects as Prozac and Paxil and definitely felt sluggish and lots of brain fog. I did not stay on Effexor for very long…maybe 2 weeks at best. Was wondering if the dosage of Effexor that your on currently…is a strong dosage or a light dosage? Is it time-released?
Keep on getting better!
Joe
That’s good to hear. I hope things keep improving.
— Begin quote from “joseph0952”
…I don’t remember the dosage of Effexor…but it was similar to the side affects as Prozac and Paxil and definitely felt sluggish and lots of brain fog. I did not stay on Effexor for very long…maybe 2 weeks at best. Was wondering if the dosage of Effexor that your on currently…is a strong dosage or a light dosage? Is it time-released?../quote]
I started taking Effexor XR 37.5 mg on May 28, then up’d that per Dr. instructions to 75 mg on June 4. After about ten days on Effexor, I started seeing relief from the headaches. I’ve had a couple slight headaches since then, but nothing really severe (until Saturday after I ate those stupid chicken nuggets which were probably full of MSG & nitrates & nitrites & other nite-bad stuff).
Now if I could just figure out why my sinuses are going crazy & my eyes are so blood-shot…never had allergies before.
— End quote
Hi everyone,
I think the problem with meds for many of us is this?
We start on doses that are supposed to be the normal starting dose.
It seems to me that mavers and vestibular patients have more sensitivity to meds more than others.
If we’re going to have worsening symptoms, all hell breaks loose, and we cant function.
I know Juls and others have talked about this numerous times before, but it’s better to take your time and be patient on a med that could eventually work than to ditch it due to having horrible SE.
From being overdoes, also if a pill is causing such SE, it could be just dose related.
My Dr looked at me like I was a nut asking if I could cut my 25mg tab , she said but this is the lowest dose you can get.
My topa has already started helping me 1/2 25mg tab, it’s made things a little easier. Less rocking and my brain fog has almost gone, with NO BAD side effect.
I wont be upping my dose for a while
hugs
jen
Good for you Jen.
From what I’ve found researching Topamax, my brain needs a particular dose in order for it to work. Too little, it won’t work. Too much, it won’t work. interestingly, I also learned that with Topa, you can have bad SEs at too low a dose and bad SEs at too high a dose - I had my worst SEs at 1/4 of a tablet (fleeting), as did Jenny, no (I’m not sure if you would call what happened bad, but it sure was a SE, no?) And Scott had a horrendous SE at 1/4 of a 25 mg tablet.
If i don’t stay at the same dose long enough, and just increase routinely, I may miss MY dose and start suffering SEs instead, because i’m too high.
The way it’s been happening: i took 1/4 of a 25 mg pill, I felt improvement, I waited 7 days. If I feel additional improvement at 7 days, i hold, for as long as i feel continued improvement. If I feel I’ve gotten as much mileage as I’m going to from this dose, then i add 1/4 pill and go on from there.
I just don’t want to miss MY dose because this med has really helped me a lot and i think I’m going to get a lot more out of it as long as i go slowly. I’m currently taking 56.25 mg and holding - i’ve been at that dose for over a week and i continue to feel better each day.
I also read somewhere, i wish i could remember where, that migrainuers seem to have a worse time with Topamax (and other ACs) than others. Hain says we have over-excitable brains. I know I do. I wonder if that explains our sensitivity to meds.
So, Jen, continued luck on your adventure with Topamax. I know I haven’t felt this good in 6 years (well, except for that nasty motion intolerance. Six years ago I could still drive)
Julie
Saw Dr. Escandon again yesterday. He’s upping my Effexor to 150 mg daily. I’ve been on the 75 mg for about a month now & have seen some good results. Apparently he thinks we can do better. I had, maybe, 5-6 headaches during the month. I told him I was peri-menopausal & he said the Effexor would help that, too, so when he asked how my mood was yesterday, I guess I shouldn’t have teared up, huh? My “it’s okay” didn’t convince him. I’m gonna finish the script of 75 mg capsules, then move up & see what happens. Side effects to be concerned about will be if I get too dizzy (the blood-pressure drop dizzy) and/or if my hands shake too much. “Too much” is relative for me. My hands have always shaken.
One good thing - he said the generic version of Effexor will be offered real soon! Thing is, the generic probably won’t be time-released - BUT we can get around that by taking two capsules a day instead of the one time-released. Anything to make this less expensive is okay with me.
Follow-up in three months.
Joy, the effexor has helped your headaches. I read your first post on this thread and you said that your dizziness was gone. Was that a lasting effect?
Julie
The dizziness is pretty much gone. I get a little ‘blood pressure’ dizzy - when I stand up too fast, but so far it’s tolerable. Until today I haven’t had any really bad headaches either … just mild ones - more annoying than disabling.
Well, I’ve gone from 75 mg to 150 mg Effexor & haven’t noticed any changes other than being tired all the time. I still have headaches … maybe a couple times a week, having a little dizziness occasionally, too. Tired even though I sleep pretty well. Had a ‘big Mo granddaddy’ headache Sunday night along with fever, chills, etc., from what I presume was a bad cold. Pretty horrible night & most of Monday, but I took two Pamprin, went to sleep & woke up headache free. Wonder what’s in Pamprin that helps? Anybody got any ideas? It’s not the 500 mg acetymenophen(sp) - that’s just Tylenol, right?
I’m thinking the Effexor isn’t working as well as it could and won’t be surprised if Dr. Escandon wants to try something else when I see him next month.
Sometimes I think I ought to just quit the Effexor (gradually, of course) & see how I feel … see if the vertigo comes back. I get so tired of feeling drugged. What’s worse - awake w/occasional headaches & vertigo popping up when I least expect it or groggy all the time & occasional headaches & NO vertigo???
Anybody ever try a bunch of drugs, then stop everything to see how you feel? I guess it’s too much to hope that I’d just eventually get over MAV & be drug-free again, huh?
— Begin quote from “joy”
Wonder what’s in Pamprin that helps? Anybody got any ideas? It’s not the 500 mg acetymenophen(sp) - that’s just Tylenol, right?
— End quote
My guess is the diuretic in the Pamprin helped. I have experienced some temporary relief from diuretics in the past. Yes, acetaminophen is the active ingredient in Tylenol.
— Begin quote from “joy”
Anybody ever try a bunch of drugs, then stop everything to see how you feel? I guess it’s too much to hope that I’d just eventually get over MAV & be drug-free again, huh?
— End quote
Yes, I did just that two months ago after the Topamax nightmare. I was so irritated by that crazy drug that I quit taking everything (Topamax, Verapamil, and Wellbutrin) just to see where I stood. I felt instantly better from stopping the Topamax. I have been experimenting with supplements and just started back with the Verapamil as a test. Please note that I am not advocating that you stop all of your prescriptions. I’m just answering your question and telling you that is what I did.
I am doing much better now than I was a few months ago. I will start a new post soon to share the secret to my success. I’m still tweaking things to hopefully get to a steady 95-100% of normal. I’m getting close…
Hi -
I have a question for Joy and forgive me if I could find the answer by suffering your former posts, but I can’t look at the computer screen very long without it hurting my eyes. I can’t do much suffering these days.
My question is this: Was your main problem headache pain or dizziness? You said your dizziness was gone at 75mg and than you upped you dose. Was that because you have really painful migraines? My problem really is the dizziness/lightheadedness and not so much headache pain. I’ve tried Topamax before just twice and felt pretty yucky even at a 1/4 of the prescribed dose. I took Effexor years ago for anxiety and stopped taking it not because of side effects, but at that time it didn’t really treat the anxiety all that well. So I am of course tempted to try that route if the Topamax doesn’t work.
Thanks so much -
Molly
Joy, are you only on Effexor, or are you on other preventatives at the same time? Just curious. Dr. Hain tells me that if Effexor doesn’t work for migraine at 75mg, it’s not worth going any higher. In fact, he doesn’t usually even go to the 75mg. But that’s just one doctor.
I know what you mean about the Topamax. I am on that at 50mg right now. At 65mg, I couldn’t breathe if you can believe it. But at the 50mg dose, I can breathe again. I also didn’t realize that I was paranoid about getting a head cold all summer (having gotten one early in the summer and it messed me up big time), so I was taking echinacea every day. When I stopped taking the echinacea, I started to feel better as well. So I am wondering if there was an interaction taking place there. After a while taking the echinacea and topamax together, I started to really get weak, and could barely breathe, but all labs were normal. After lowering the topamax, but stopping the echinacea all together, the problem completely went away. Not sure which was the culprit, the interaction or the dosage of topamax by itself. Also, the topamax is making my skin break out EVERYWHERE. But I have to ask myself. What stinks less? Skin problems or MAV. And the answer is MAV. Yes, my MAV still stinks pretty bad and I am nowhere near in remission, BUT, my symptoms are stablized on topamax and I get no “swings” in symptoms. I am the same, day in, and day out. I wish that I could finally get something in me to get actual relief. I am simply stablized at “crappy” now lol. Anyway, just sharing my topamax experience.
I think that in the long run, having read lots of stories about different preventatives, having spoken to a lot of different people about their meds, I have personally come to the conclusion that currently, there just is no wonderful way to deal with this without causing other issues. I guess the key is to find a med or combo of meds that messes up our systems the least. The next step for me looks to be verapamil, but to be honest, I am worried about it because my BP/pulse are on the low/normal side. I am wondering if it will fatigue me out and give me orthostatic hypotension. I have just started to get my energy back after months of fatigue on topamax. But even still, once I start to do even a little activity, WHAM, the headache starts. Granted, it’s not a migraine, but it’s a low-grade headache that also increases all my other symptoms. I think I am going to start another thread on this. I am curious about others with this.
Joy, I hope you continue to get better, and find the right combo to help you feel better. If I were in your position, I might not get OFF the effexor, but I might be looking to lower it back to 75mg, and add another preventative, but that’s just my personal opinion based on what’s happening to me. Since one med at a high dose gives me problems, I am thinking that two or three meds at small to moderate doses might work better. But I’m no doctor.
Boslee
Hi Boslee-
You mentioned your skin is breaking out from the Topa. How long have you had it, and is it an itchy rash-type thing???
Kim
Hi Kim. Yeah, my skin is breaking out. I started with pimples on my back several weeks back, and now I’m getting them a little on my legs, chest, etc. It’s not rashy, not at all, and the itchiness was only on my back for a few days, and stopped. Now I’m good, but the breakouts haven’t stopped. I was also having breathing issues on it, but since lowering back down to 56.25mg, I’m good again 
Bos
Boslee, have you ever tried Paxil??
I know you and I PM frequently and wonderded if it was you who mentioned the paxil, I’m sure it’s you
or am I getting you mistaken with someone else?
and you siad it helped didnt it?
jen
— Begin quote from “Boslee1975”
Joy, are you only on Effexor, or are you on other preventatives at the same time? Just curious. Dr. Hain tells me that if Effexor doesn’t work for migraine at 75mg, it’s not worth going any higher. In fact, he doesn’t usually even go to the 75mg. But that’s just one doctor…Boslee
— End quote
Only on Effexor right now.
— Begin quote from “Molly”
Hi - I have a question for Joy and forgive me if I could find the answer by suffering your former posts, but I can’t look at the computer screen very long without it hurting my eyes. I can’t do much suffering these days.
My question is this: Was your main problem headache pain or dizziness? You said your dizziness was gone at 75mg and than you upped you dose. Was that because you have really painful migraines? My problem really is the dizziness/lightheadedness and not so much headache pain…Molly
— End quote
Originally - ~3 years ago - my problem was vertigo 3-4 times a week & 24/7 dizziness. Hardly ever had headaches. I did about 6 months of valium which slowed the vertigo down but eventually stopped working. When I started seeing the neurotologist I was complaining of vertigo/dizziness with occasional headaches.
Verapamil stopped the dizzies & vertigo, but caused more headaches, so my neuroto sent me to a neurologist/Dr. Escandon, who put me on Atenolol - didn’t do anything. Next came Effexor.
75 mg Effexor lessened the frequency & severity of my headaches & I haven’t had anymore vertigo, although I do have occasional days of dizzy. Seems like lately the dizzy is getting worse. Dr. Escandon seemed to think we could ‘do better’ than I had been doing (at 75 mg) & that’s why he upped it to 150 mg. It wouldn’t surprise me if he stopped the Effexor & tried something else when I see him next month.
And I seem to have a lot of trouble with computer screens, too. That’s a big problem when ~95% of my job involves computer work.
My headaches are … oh … more nagging than head-splitting most of the time, although I do get a head-splitter maybe once or twice a month.
Most of all, I wish there was something that would stop the food-triggering headaches! I know! I know! Don’t eat the food trigger!! It just seems to be more than I can handle. It seems like there are only about 12 things I can eat without problems.
thanks Joy for your response. What area of the country are you in? I am having an awful few days of dizziness and ragweed is AWFUL here in Nashville. It always makes me very dizzy anyway, but with this MAV thing, it’s really pushing me over my threshold.
I haven’t tried any meds yet because when I tried even the smallest dose of Topamax, it waked me out. I was feeling really hopeful when I read of you success with Effexor. I’m sorry to hear that your dizziness is seeming to get worse.
Best -
Molly