I decided to start the Effexor today at a low dose of 12.5 mg. I am quite worried, as it seems to be that many have had pretty annoying side effects. I also desperately hope that it works. I’ve been on so many meds that I really want this to be my last trial. With each medication failing, I become more and more hopeless. Perhaps, this will be the one! Will keep everyone posted.
Good luck Lisa! I’ve got all my fingers crossed for you.
Becky xxx
Lisa,
I very much want this to be the one for you too. I want you to finally have some relief. It would also be nice to hear another success story with Effexor. I’ve been thinking about trying it myself if my current med doesn’t do the trick. Make sure you take your time with the titration to try to minimize side effects.
I seem to have hit the dosage ceiling with my latest med trial at 100 mg. of zonisamide. That is only the starting dose for its intended use as a antiseizure med, but I can’t handle the side effects at 125 mg. I plan to stick to 100 mg. for a while, and if I don’t get enough relief I may try adding Effexor. That may depend somewhat on how your trial goes to be honest.
Please keep us posted. Good luck, Lisa! You are in my thoughts and prayers.
Marci
Lisa - Good luck with the effexor. I decided to not wait on making the transition from nortriptyline to verapamil. I’m on day 3 (120 mg) and so far so good. The heavy brain fog has somewhat decreased already and the only side effect so far is insomnia. I want to take this opportunity to thank all who moderate and contribute to this forum. The posted articles and comments have been informative. We will all get through this; good luck to all.
Good luck, Lisa. Slow and easy, and you will have lots of positive thoughts coming your way!
Thank you so very much for everyone’s kind words. One hour after taking the med, I was extremely nauseous and very woozy, and still am now. The wooziness is similar to when I took Nortriptyline. In turn, my dizziness feels worse than ever. But, I am aware that my body should adjust in time. I was crying for 30 minutes straight. I just had it with this whole illness. The weather is so beautiful today. And, instead, of feeling glad by the weather I feel more upset than ever. I keep on looking out my window seeing people having fun, etc., and it just reminds me that i’m sick for yet another season. I know - very negative thinking, which isn’t helping. I am just so tired of feeling so ill.
Hello,
Just wanted to say ben is right, take it veeery slow. After my recent experience on it, I went up too fast and felt bad. Then I came down too fast and feel even worse.
If I did this again I’d do what I believe howie did with zoloft and take a low dose and stay there for a month before trying to go up. If I then decided to come off I would do it way more slowly.
I thought because I was dealing with low doses that it was ok to be a bit gung ho about it. It wasn’t.
Posted this and then saw your post, just to say you are not alone, I am miserable about this illness today like I haven’t been in a long while. It’s gorgeous weather in England and somehow that does make it even grimmer. I also have a load of work pressure at the moment and have no idea how I am going to cope being as dizzy as I currently am.
H
Yeah, it’s hard to look at things that would normally bring us enjoyment when we know we’re not yet at the place of being able to enjoy it ourselves.
MAV is infuriating because (among other reasons) there’s so much still unknown about it, and even the effective treatments aren’t exactly quick-acting.
I’m surprised that you got a reaction so quickly. People are often telling me it takes some time for any given medicine to even work its way into the bloodstream or otherwise become noticeable. Perhaps anxiety about the medicine (will it work eventually, will it give side effects, etc) had a hand in how you felt/feel after taking the pill? But then again, I’m hardly in a position to judge such a thing.
Is there anything you did (while on nortriptyline) that was at all useful in relieving some of the wooziness?
Hannah - thanks for that advice. Are you currently on any meds. I apologize if you had already written that. My mind isn’t nearly as sharp as it used to be.
George - I, too, hate the uncertainty of all of this. It makes it so very difficult. I think you can experience side effects right away. I also did on Nortriptyline. I didn’t find anything that helped with the wooziness, but being patient and waiting until my body adjusted and the drug reached a level in my system.
Lisa I hope things settle for you the way they did for me.
I did have a few days during titration that I felt a bit off.
So I waited until it resolved and then upped the dose again.
I also felt some anxiety and insomnia, it was only during titration, and was intermittent.
It went away after a few days.
I’m sorry you’re feeling down.
It so frightening trying new meds and not knowing what will happen next.
I’ve had quite a bit of success with effexor,
It’s really relieved all of my symptoms, I don’t know if it’s completely taken away the migriane,
Sometimes I can still feel gentle rocking in the background, but it’s made a huge difference in my every day living.
I’m at the end of my monthlies and only had 2 days of low-grade symptoms
which (I freaked about) :shock:
because I thought it was coming back, but that hasn’t been the case I’m still at about 90% better than before effexor.
I would normally not be able to function during this time.
xxxx
jen
Jen - that is so very encouraging. I would give anything to even feel 50% better. At what dose did you start to feel better? was it gradual? I know everyone is different, but I am curious. Did you have 24/7 rocking (disequilibrium)? That is my worst symptom and most disabling. I will be so very happy if that symptom goes away. You must be thrilled.
Hi Lisa,
I understand how you feel. When I took 12.5 mg the first time I got horrible anxeity and was feeling so bad. Dr. Hain told me to bring it down to a 1/4 and then I felt fine. Maybe you should talk to him about that.
I’m currently not doing that great on this stuff and I’m giving it another 5 days until I decided if I should stop…
This is hell, and it’s hard to do anything…I wish we all get better soon…
Emma
Emma - I wish you lots of luck. I want to try my best to stick it out because I don’t have much choice. I’ve tried so many meds already. I made the mistake of stopping nortriptyline prematurely, and wish I gave it a full trial so at least I can cross it off my list if it didn’t work. I know that the side effects are awful, but hope that my body will adjust. S o sorry to hear that you were doing ok, and now you’re not. It absolutely stinks to deal with these side effects on top of how miserable we are already feeling. My husband said think of how miserable you feel from the medication as a side effect of the medication trying to fix everything wrong with me. Made me feel better for a second. I wish you all the best. I just reread the above, and wow - I am not making much sense today. I hope that what I just wrote was slightly intelligible to you. Please keep me posted on how you’re doing. I, too, cannot really do anything. I’ve gotten to the point where I often just sit and stare into space. I’m just so very sad, and yearn for my “old life” all the time. There is so little we can do feeling this awful.
Hi Lisa
It was gradual I started feeling much better by the time I reached 37mg
I sat on that for a while but and was still seeing aura daily, without the other symptoms, so after a month I decided to go higher, I had no difficulty titrating at that stage, and did it by 3rds weekly
With no overwhelming side effects.
A couple of days of insomnia, that I used melatonin for, I stopped using that soon after and haven’t had any trouble since.
Lisa Yes… I’ve had 24/7 rocking for almost 16 years now.
jen
Hi there Lisa,
I am currently taking propanolol. I hope you don’t mind, I have cut and pasted something I wrote in another thread about it. Absolutely no need to apologise for not seeing it.
I initially started on the propranolol about three years ago at 20mg. I did really well on a very low dose for about a year, then had a relapse. I slowly titrated my dose up to 80mg and stayed there. As I started to doubt whether it was still effective, and I hated the weight gain, I dropped the dose earlier this year and ended up taking 30mg a day. I think the fact I am feeling so bad is partly the effexor side effects, but partly the dose drop in propranonol. Needless to say I am taking the dose back up. The problem with the propranolol is that I am not very robust on it, I can do ok for months and then have a huge relapse and be ill for days and often weeks, which is why I am trying other drugs.
I really hope you have success with effexor. You just never know which drug will be the one that makes the difference, let’s hope this is the answer for you.
H
Hi Lisa
Thinking of you, I really hope this drug helps - you will know it when it does ! You have been too long at the difficult stage, you need a break to ramp down a bit.
I am OK on the Pizotifen, but it may have had the side effect of making me depressed, or else I am just depressed - had a bout of crying and have felt tearful for the last few days, which is something I have not had since the first year of this horrendous thing. Someone posted that the depression side effect can go after a bit. So you never know. Otherwise the very low dose I am on is keeping it all at bay, just.
Great spring like weather here, but as you said in another post, if you are feeling down it is a bit sad seeing the world go by all spring like while you are still feeling pretty winterish. I have just been up on my roof garden and tidying that up always has a theraputic effect and it is v. windswept so I get lots of fresh air. Small bursts of exercise are supposed to be good, rather than a massive assualt of vrt which the brain can’t deal with.
Wishing you lots of luck and success with the new drug.
Georgina
Jenny - you must be thrilled after having the rocking for so very long!! I forget - Do you see or do phone consults with Hain or did another doc recommend Effexor.
Hannah - thanks. I wish you lots of luck.
Georgina - thank you so much. I hope the depression passes and you do even better on the drug.
Thanks Lisa yes I’m really happy, it’s been a long and frustrating road.
One thing I’ve learnt is “nothing is set in stone” when it comes to having Mav and using medications
I‘ve had false starts on meds before and then my Mav returned, so I’m a pessimist about it all.
I live in Australia, I’m not a patient of Dr Hains, but I do follow his reports on medications.
Wishing you all the best
Jen.
Lisa,
I just want to encourage you to stick with it. Effexor has given me SO much of my life back! I spent about 18 months pretty much house-bound! Awful (as I’m sure you know) Would love to be any help I could be to you. I see Dr Hain and Dr Cherchi in Chicago. Is that your doctor as well?
Let me know, if I can help you in any way. dsmoerdyk@sbcglobal.net
Sheryl
Hi Sheryl,
That is great to hear that you are doing great on Effexor. How long did it take you before you started feeling a change?
Did you have problems with side effects? Dosage?
I’m taking Effexor and Dr. Hain is my doctor too. I was doing ok on the stuff until this last Tuesday…I was taking about 17 mg of the pill but decreased to a 1/3 again today because I was feeling so lightheaded and much more dizzy…
I been on the Effexor for almost 6 weeks now and I’m losing hope a little. I’m having such trouble getting up to 37.5 mg and I don’t know if my body will ever allow it…
Dr. Hain thinks this is going to work for me but I don’t know… :?
Emma