I guess I’m what you would call an Effexor Success Story…with an unhappy ending. I started the effexor after having severe reactions to both Flunarizine and Verapamil…and it was terrible…I was feeling worse than I had felt in a very long time…and I was having new symptoms to this nightmare…and then suddenly…THE FOG LIFTED, my head was no longer heavy, the world wasn’t spinning, I wasn’t having headaches, the effexor kicked in!!! However, right before the fog lifted, I started reacting to the effexor…my neck was so itchy, I couldn’t stop scratching and clawing at my neck…so I started to slowly get off the effexor…that’s when the kick-in happened…but I am so med-sensitive that I seem to have reactions (and allergies) to everything I take…
When the fog lifted, and I was able to think straight again (be it temporarily) I made a very life-changing decision that I was going to start looking into having a baby the single mother by choice route…I’m not getting any younger and I felt really clear at the time…and still do feel clear about this decision…but now that I’m off the effexor, I feel the symptoms coming back a little stronger every day.
I have an appointment with a naturopathic doctor in the middle of October…hopefully I can get some natural remedies from him…but I never hear of any of you talking about taking the naturopathic route to try to solve this MAV problem. I figure that as soon as I have my baby (which won’t be for a while, as I can’t even get in to see a fertility doctor before December just to get started) I can always go back to the drugs…the effexor was working, although can I deal with clawing at my neck constantly while I’m on it…or is there a drug similar to effexor that will lift the heavy headedness without the itch…
I’m a teacher, and have had a successful start to the school year due to the Effexor…I’m nervous again about teaching while the dizziness comes back. Hopefully the naturopath can help me with natural remedies.
Firstly, on a bright note, that fact that something helped is wonderful evidence that you WILL indeed find another drug that helps and this is curable. Also, congrats on your decision to have a baby. I wish you all the luck in the world.
I’m so sorry that you had side effects. I know that some docs prescribe SSRIs. Perhaps, that’s worth a trial since Effexor was helpful. Mechanisms are a bit different, but they both target serotonin. I have also done a lot of research on zoloft and pregnant (being pregnant myself), and it is quite safe. If you’ve been following my posts, though, I’ve been a bit worried to take it. I, though, think I am ready to try it out as it really is the only drug I am aware of that can be safely taken during pregnancy for this.
As far as naturopathy, I figure anything is worth a shot. I’m not at all familiar though.
lots of luck to you. btw, what dose of effexor ended up helping? do you have disquilibrium - did that go away?
— Begin quote from “Lisa Rebecca”
I never hear of any of you talking about taking the naturopathic route to try to solve this MAV problem. Hopefully the naturopath can help me with natural remedies.
— End quote
They’re rarely discussed because frankly, they don’t work and the evidence backs this up. In the 6 years I’ve been dealing with this junk I don’t know of a single case where using herbs or seeking a naturopth’s advice caused anyone to become well again. The word “natural” is used by naturopaths to convince people that there is somehow something magical about using a natural or alternative therapy. Of course tobacco, ricin, and snake venom are all natural too and deadly. I can understand your frustration, however, with the meds you’ve been on only to have the itching etc happen. Have you tried Cymbalta by the way? I’m wondering if you could have the same benefit minus the unfortunate side effect of Effexor. What about any of the other SSRIs? Emma had an itching reaction on Cipramil that stopped after a few weeks. Maybe it will go away with time?
Evidence does support the following for lowering migraine frequency and is worth a try in the supplement department: vit B2, B12, magnesium, and CoQ 10. Treatments such as acupuncture are no better than massage in terms of relieving tension (massage was far more effective for me) and in a recent trial acupuncture was comparable to a “sham” group having toothpicks twirled on their skin. Relieving muscle tension (massage) and encouraging relaxation through any of these methods (acupuncture, yoga or meditation) may in itself reduce migraine attacks but none of these will cure it or make you grow “taller in the pool” as Steve Rauch puts it.
It’s a really fantastic sign though that Effexor cleared up the mess for you. At least you know that it can be treated and your migraine responds to meds. Now, you just have to find a med that won’t produce unbearable side effects. The only antidepressant I can handle is Paxil and I’ve been on EVERY single one. Keep hunting.
Best … Scott
I have been following your posts, especially b/c I know you’re pregnant too…I’ve actually been keeping my mom informed on your status, b/c she’s going to be my support through the pregnancy, so she needs to know what to expect. I was only up to the 37.5 full dose when it kicked in…and I couldn’t believe it…after ten months (today) of feeling so lousy all the time…even good days were never “good”…I was normal again…completely normal…for a couple of weeks…and I was so happy…it was euphoric…and then last week I broke down b/c the dizziness/heavy headedness started creeping back in…and it just devastated me…since stopping the effexor, I haven’t felt quite right…my mood is definitely down and my neck and head are still so itchy I can’t take it…hopefully that will go away over time. I once had an allergic reaction to meds where I broke out in hives on my back and head only for 3 months…and I was completely off the meds. With verapamil, I only broke out in a full body rash that went away as soon as I stopped the meds (cold turkey so the withdrawal was terrible). I’m just feeling the dizziness setting back in with the effexor…nothing out of the ordinary for me and no “brain shivers” like what I’ve read online…unless what I have is brain shivers :)…but the terrible itch drives me crazy. At the beginning, I thought I had lice (even though it was summer vacation and I wasn’t working with the kids) and I kept having my mom check my head and of course there was nothing there…and now at work, I have to reassure the other teachers that I’m scratching my neck and behind my ears b/c of a med reaction, not b/c I have lice…
I’m hoping the naturopathic doctor can maybe find me a natural remedy to cure the dizzies and that won’t interfere with me trying to become pregnant. How far along are you now?
I wish you all the best. Great that your mother is a huge support. I feel badly that you’ve been following my story, as my updates are so grim. Wish I had better news. I’ll be 21 weeks tomorrow. I feel strongly that if one medication worked, something else will work.
Hi Lisa Rebecca,
Congratulations on deciding to have a baby! That is a big, wonderful decision, for anyone but particularly on your own and with MAV. I commend you and wish you well
As for the naturopathy path I would just be a little cautious. Working on your diet and general well being is excellent, both for MAV and for getting ready for pregnancy, I would just say be mindful of any “supplements” or “natural herbs” or similar. I say that because these products are often not tested scientifically (if they showed demonstrable positive results doctors would recommend them) and/or the doses aren’t regulated. That is, the doses often vary wildly from brand to brand. It’s very easy (it’s intuitive, we all do it) to think that because something is “natural” it is good for you or at least harmless. Not so; “natural remedies” can be very powerful and interact with other medicines. If the “supplement” is having an effect then it is a drug - it doesn’t matter if it come as a pill in a box from your doctor or as a herb or powder from a natuopath - if there’s an active component in there, it’s a drug. The difference is that with medicines your doctor prescribes or recommends the drug has been tested, results and side effects measured and documented and you know what you’re in for. With a lot of “natural” stuff that just isn’t the case. I’m not saying you should not go to a naturopath (you’re a big girl :lol: ) just to be mindful that they are not medical professionals and not even scientists. They are also even less likely to know about MAV than medical doctors. I’d expect that what little they do know would be about “migraine” as most people think of it, ie a really bad, and passing headache. As all of us on this forum know, migraine and MAV is a LOT more complicated that that.
Having said all that, getting well is the main thing, no matter how you do it! And having a healthy happy baby
Thank you for your support…I think I’m grasping at straws b/c I want to feel better and I want to have a baby…I know that once I have a baby I can go back on any meds…although as I continue to scratch, I know that effexor is not for me, no matter how well it was working. I also think I’m just frustrated b/c prior to starting my med-search for a cure for this MAV or whatever it is that I have, I had already had allergies to other medications, then to have terrible reactions to the three that I tried, is very frustrating. And, reading about what Lisa is going through while pregnant seems horrible. I am at 10 months of dizziness/heavy headedness, which, in that time, I could have had a baby and gotten back on meds…but the reality is that these ten months have been mostly awful (with some good days) and I haven’t even gotten an appointment at the fertility clinic yet (although the receptionist left me a very nice message tonight telling me that she will call tomorrow with an appointment for Dec/Jan).
People use naturopaths and swear by them. I come from a family where we have always used medical doctors and never believed in anything non-medical. We choose physio over chiropractic and doctors over naturopaths…but I think I’m just trying to keep an open mind and see if there’s some “cure” that I won’t have a reaction to. This summer I had terrible tremors (flunarizine), full body rash (verapamil) and uncontrollable itch (with no more dizzies) on effexor. And these are just the reactions…I didn’t need to mention all of the side effects that I’m sure you all have suffered through…the nightmares, the restless sleepless nights, the weight gain, the stomach discomfort, did I mention the nightmares? So, if something “natural” can provide me with relief without all of these terrible side effects and perhaps I can take something while pregnant…I don’t know…miracle cure, anyone?
For now, I have time b/c I am not even seeing the naturopath until October 19th.
Thanks again for all of your input…I value it so much.
Hi Lisa Rebecca,
The med side effects you’ve endured are terrible. Sorry to hear it. Don’t lose hope on meds though. I have had a bad time on about 18 meds now but have found a few that do not cause trouble. I really think you may have to turn over every stone until you come across something that won’t cause an unbearable reaction. There must be one there for you. Adam has been through approx 30 meds but now finds Zoloft to be the magic bullet for him, not a cure, but he is able to get on with life.
I went through the whole “natural” thing myself and even had some good temporary results on St John’s Wort last year. It’s a herb and sounds like it should be nice and easy on the sytem without side effects. Not so. It caused an escalation in head pain, random facial muscle twitching and weird pain in my muscles if I stretched. The withdrawal was worse than Cipramil. I stupidly threw away 2 grand on another “natural” migraine program this time last year which was shear misery every step of the way. Finally, I was given Chinese herbs last year. They caused my dizziness to go through the roof within hours of taking them. I stayed at it for 5 days and dumped it. I immediately felt better. My naturopathic girlfriend from years back gave me herbal concoctions for other things and I’d always end up with burning reflux that took weeks to get rid of. All in all, a great waste of money and time. The bottom line as Victoria says is that if there’s an active molecule – natural origin or not – it’s a drug and with any drug comes potential side effects. Be weary of that no matter what the treatment.
Another person on the board has done well on Cymbalta – something you might consider given the result with Effexor. C might not cause the allergy.
Best … Scott
Lisa - what you wrote makes so much sense. It can’t hurt to go to a naturopath, as long as you are cautious. I started zoloft and will let you know how it goes, as it is the only med that I discovered that you can safely take when pregnant. I will write a new thread about that. All the best. I hope you get an appt at fertility clinic soon.
With verapamil, I only broke out in a full body rash that went away as soon as I stopped the meds (cold turkey so the withdrawal was terrible). quote]
Wish I had known about withdrawal from Verapamil. Not fun at all, taking a med break after this experience.
That sounds SO very frustrating. I can’t really relate since I’ve never had an allergic reaction to anything in my life… I have to second or third the others’ suggestions that might try Cymbalta since it is so similar to Effexor. It sounds like you were so close with Effexor to finding a potential solution! Would it be worth more one try with the pharmaceuticals if you are trying one that has a lot of potential to help? Or is the prospect of being disapointed by allergies just too much? Do you think there’s something in the capsules or something that you might be allergic to? Can they specialmake these drugs with non-allergenic capsules or something? Sorry if that was naive! I definitelly understand if you need a break, but if you get to the point again where you will try anything, maybe give cymbalta a thought. good luck.
I tried the natural route & it didn’t work for me. I saw a chiropractor who specialized in kinesiology & muscle testing. He prescribed supplements and made me follow a gluten free diet and in all the months of seeing him I really saw no improvement of my symptoms. After many months & lots of money, he got upset & angry when I said it wasn’t helping. He blamed me and said I was too skeptical and that’s why it wasn’t working. Seems to me that supplements should work whether you’re skeptical or not! The only improvement that I have had is with nortriptyline and beta blockers so far.
Your experience with the chiro would be funny if it wasn’t a) a waste of your hard earned money and b) a waste of your time. Who knew that skepticism over rides the effect of supplements? There should be a warning on the bottle
— Begin quote from “dizzygrl”
He blamed me and said I was too skeptical and that’s why it wasn’t working. Seems to me that supplements should work whether you’re skeptical or not!.
— End quote
Hi dizzygrl –– that’s just outrageous that he said that to you. That kind of crap coming from “alternative” therapists makes me crazy. I’m gald you’re out of there and won’t have to waste any more time or money.
Best … Scott
Wow! If naturopathic medicine is all just the placebo effect they should make it a lot cheaper! Sorry you were treated so poorly… I hope there is someone else you can see…