Hi Everyone,
I was just curious who on here was prescribed either Cymbalta or Savella for MAV? Which one do you take, and how much does it help your dizziness? I’m just curious because my neurologist says he never rx’s these for MAV, along with no Effexor or SSRI’s. I may want to try adding one of these also for the pain relief that these drugs can give. Would love to hear your experiences with these meds!
Sarah
Sarah
Most doctors I have read about on this forum do not prescribe Cymbalta. My neuro did for whatever reason I don’t know. I think he isn’t a MAV specialist and just assumed that I have anxiety issues only. I can tell you that Cymbalta has helped a lot with my anxiety problem. Dizziness not so much but def. better than before. My neuro now wants me to add Topamax to try and fix the dizziness.
Nabeel
Sarah,
My GP prescribed 30 mg. of Cymbalta (to deal with anxiety and muscle tension) and 10 mg. Propranalol (to deal with MAV). I started a week ago and they seem to be helping me feel better, including less dizzy. The tinnitus has stayed the same. I’ve only just begun, so I’m being cautiously optimistic.
Good luck to you:)!
Thank you both for your replies! I am glad that you are getting some relief with Cymbalta- even if it is more for the anxiety than the dizziness- feeling better is feeling better, right?
HI
I saw a migraine specialist, and he gave me Cymbalta(60) and Amitriptyline (10mg) to start with. I started with Ami and it didn’t do the job, so I went on to cymbalta which has helped me and I was able to tolerate much better than my attempts with Effexor.
I have seen about 4 people get much better with Cymbalta, although most doctors still don’t think of it as a preventative…it is newer then fex, or the tricyclics, so maybe over time the feedback will show that it does help? It is also indicated for help with pain…fibromyalgia etc…
Kelley
ps
surprisingly, I don’t know about savella…i better bone up on my studies!! 
Hi Kelley,
Thank you for your reply! So are you just on Cymbalta now, or are you on Ami as well? I am interested in Cymbalta because I tried it before I got dizzy to help with chronic pain. Interestingly enough, before I got dizzy, I have always had migraines. While on was on the Cymbalta (6 months), it did nothing to prevent the migraines. However, I realized after I got off it that it was helping some with my chronic pain, so I have been thinking about trying it again. Most of the meds make my dizziness worse, so I am hesitant to try it again. However, after reading about how several people on here have been helped by it, I am a lot more encouraged! Thank you for mentioning the other 4 people you have heard to benefit from this- that is wonderful! Savella is in the same category of drugs- SNRI’s- Cymbalta and Effexor are also SNRI’s. I think Savella is really only prescribed for chronic pain so I’m not surprised I haven’t seen it mentioned on here.
Incidentally, I also lost 10 lbs. while on Cymbalta, so that would be an added bonus of trying it again!
How are you feeling now on the med- like what % better? How long have you been taking it? Do you think it has helped your balance when walking?
Sarah
HI Sarah,
I would say it took about a month for things to really begin to kick in. I got a little wired at first and found that klonopin helped with that. I had some chest palpitations, but my cardiologist tested me and I was fine. I started low…like 10mg and now am on 50mg. (I take 30 at night and 20 in the am) I found splitting the dose worked better for me. I didn’t notice weight gain till I added in phenergan.
I would say cymbalta got me around 75% better…and then adding phenergan got me about 85 % and then a small dose of klonopin makes me roughly 100% better, although I still have my moments. I will also say that Cymbalta doesn’t make me numb to emotions…some SSRI’s can give you an I don’t care attitude, and I’m still an emotional being…whether that is good or bad depends on who you ask! lol
The side effect that really sucks for me is constipation. I think all these meds quiet the central nervous system, and therefore my digestive track…so that’s a bummer. Magnesium helps, but I end up getting colonics, and that really fixes me right up!!
Best to you…
Kelley
ps
One person on here got better at just 20mg of Cymbalta…fyi
What type of medication is phenergan? As far as the mood effects from it- I know it is supposed to help with anxiety and depression, but it did NOTHING for my mood- I actually think it may have increased my anxiety, at least in the beginning. SSRI’s work best for me for anxiety but unfortunately now with the dizziness, the ones I have tried (Prozac and Lexapro) make my symptoms 50 times worse 
As far as the constipation- I got that when I went up to 90 mg and above- at 60 mg I seemed to be ok. I did get really bad urinary retention (where you feel like you can’t fully empty your bladder) and a strange facial twitch which took several weeks to go away. I also got horrible constipation from taking another tricyclic, Clomipramine- nothing I did helped it- it is not fun at all- thats good that colonics helps you with that. Better to be constipated than dizzy though lol!!!
Phenergan is basically an antihistamine. It also has some other qualities to it that most docs dont even pay attention to. It affects dopamine on a small scale…it’ll make you tired, helps with post surgical nausea…you can google it and see wikipedia’s breakdown of the different areas it affects.
Are you saying Cymbalta didn’t help your mood?
Any of these meds can increase anxiety at first…as your serotonin receptors go wild with their new found “extra sero”…it can be wiring. For other people, they’ll just want to sleep. A med you might want to try for mood and anxiety is Remeron. That was one of my faves…slept like a champ and within days felt heaps better. Unfortunately, it was short lasting.
K.
Kelley I thought u were a patient of Dr Hain and I remember from reading somewhere that he does not prescribe cymbalta for MAV bcz he reckons it only makes a marginal difference unlike the FEX which he says is one of the best for MAV. was it Hain who prescribed cymbalta to u?
Good memory Nabeel. Hain prescribed Effexor, no surprise, and it didn’t work well. From there he told me to try propranolol, and at that point I had a compete melt down. Was very depressed crying most days all day. I found a local doctor, in Las Vegas, and he prescribed the Ami/Cymbalta. I also was working with a psychiatrist, and he agreed to help me monitor my meds. I find psychiatrists much more compassionate…they deal with so many mood issues, whereas Neurologists deal with so many terrible other diseases, they probably think being dizzy isn’t such a big deal.
I actually wrote and told Dr. Hain that the Cymbalta was working, because i know he updates his med charts on his website. I don’t know if he paid much attention or not. I liked him a great deal, but I didn’t do well on is formula, and I find when that happens, a lot of doctors seem to lose interest in you because you frustrate them.
Kelley
kelley I agree with what you say regarding frustrated doctors if their set list of favourite medicines don’t work. Yes you are right, I think neurologists see people suffering from stroke, MS and so many other brain/nerve related diseases that they think MAV is just another benign condition that eventually gets better with time and people just over react due to anxiety. However, both Dr Shaun Watson and Dr Ron Granot are migraine specialists and they both understand how debilitating MAV can be. Both of them do not prescribe cymbalta as their first line MAV treatments. My neurologist in Singapore prescribed the cymbalta for anxiety only. Good thing he did, bcz it ended up working a little bit for the dizziness as well, enough for me to push myself to move on with my life, but not enough to be 90%+. Hence Granot and Watson both want me to start topamax and start trialling meds from there until one works.
I think that is a fair drug trial…if you are at 90mg, this may be as good as it gets for MAV prevention. But in all reality, the first 3 preventatives (topamax, tricylcics and beta blockers) dont work for vary many people, if at all. Dr. Baloh at UCLA, who is a mav/migraine guru, says that if you can get 50% of your symptoms controlled, he considers that a success. I saw 
not good enough! It took me 3 meds to get in the 90+ percentile…
K
Hi Kelley- yes I was saying that Cymbalta surprisingly NEVER helped with my anxiety or depression- I was on it for 6 months. I’m sorry to hear both of your experiences about drs. becoming frustrated if you don’t respond to their favorite medications- that is really discouraging to see as a patient. I haven’t experienced that exactly, but drs. have become frustrated with me by all the side effects I get that prevent me from taking a med (the dizziness)- I mean I guess I can see this. If it is your job to prescribe medication that helps to someone, and they basically state that they can’t tolerate any of them, I guess I would be frustrated too??? But Kelley, I agree with you about the psychiatrist being more understanding- but they are used to dealing with people who are in a bad state of mind, whereas I guess the neuro might not see that everyday?
Thanks Kelley about the Remeron suggestion- I have only heard of it because I have seen other dizzies who take it. I am surprised this has never been mentioned to me by my psychiatrist- I had tried so many meds!!! I’m sorry it didn’t work long-term of you, that is so incredibly frustrating- why does this happen sometimes???
Anyway, thanks again for your feedback!
I’m surprised Cymbalta didn’t help, but some people just respond to other meds…if you find you are not responding to any of the ssri or snri (efffexor/cymbalta) you may want to consider abilify. My psychiatrist is a big fan of it and sees a lot of help for people. He wanted me to try it as well but then I discovered phenergan, and until that stops working, I will stick with what works.
You say you’ve tried a lot of meds? Which ones? And did you know some people genetically don’t respond to certain drugs because of their inability to metabolize them. It’s quite interesting!!
Kelley
Hi Kelley,
In the past, before my dizziness, I had taken prozac for several years to help with anxiety, which I have had my whole life. It worked really well for me, but I developed some side effects that I didn’t like, and I also at the same time started to have chronic pain. It was at this point that my Dr. changed me to Cymbalta. I have tried to go back to SSRIs since (Prozac and Lexapro) and they make my dizziness 50 times worse- it sucks because I need a med like this to help me cope, but I just can’t take the added dizziness I am on nortriptiline which is supposed to help with anxiety and depression but it doesn’t work nearly as well as the SSRIs in my case. My Dr. did mention abilify- but I actually tried Seroquel XR which is similar I think. Surprisingly, this is one the only meds that didn’t aggravate my dizziness- but it didn’t seem to help me and it made me gain weight very quickly, so I stopped it.
In terms of trying to help the dizziness, I have tried Amitrityline, Nortriptiline (and am on this now), Lyrica (going to re-try this now), Effexor (couldn’t get past 10 days couldn’t walk), Gabapentin, Topamax, Depakote- I think that is it? Will try a calcium channel blocker and beta blocker too at some point.
Glad to hear you have found a combo that works so well for you!!! How long have you been on this combo for? Do you get any bad weeks or days, or is it pretty consistent?
Sarah
It is pretty consistant
I would have to say since you’ve always had anxiety, that serotonin is your problem.
I would say try the Remeron…it is actually a sero antagonist at the receptors that cause anxiety…another ssri you might want to try is Paxil.
My combo has been really good for almost 2 years. I would be tempted to try it, but a lot of people get off their meds and then if mav comes back, the meds don’t work the next go around…so I’m basically just continuing as is…
It seems like some people on here are on Paxil- is that why you suggested it? I have seen others on here on Zoloft too? That is awesome you are doing well for so long! I 100% agree with you about coming off the meds- unless you have horrible side effects or are getting pregnant, I think you should stay on it, or else you risk exactly what you stated below.
P.S. Kelley- because you have been doing well for so long, you should post a success story for others to see It gives the rest of us hope!