After having an elevated heart rate for the past few weeks Dr. Hain decided to wean me off the Topamax after a 5 week trial with no change. I am currently going to stay at 50 mg of amitriptyline (for about 2 weeks) and will stay there until my next appointment on September 16th and see if that makes any difference.
If it does not, Effexor is next on my list. Is there any one here who has had a good experience, or even a mediocre one with Effexor? Some of the side effects scare me. I want to be ready with my questions to ask him about the side effects when I go in.
Hi Sarah,
Sorry your topamax trial had to come to an end but at least you tried. That is all part of finding the right drug or drug combo.
I have to say I would be shocked if Hain would start you on Effexor while you were still on Amitriptyline! This combination is contraindicated usually because of the chance of serotonin syndrome. Both drugs affect serotonin. Although technically they are in two different classes of meds, both work on the serotonin receptor. If Ami is helping a bit, it may not make sense to discontinue this med, but instead add another class such as a calcium channel blocker, for example.
Just my two cents. Let us know what Dr. Hain has to say.
Thanks LIsa, I will for sure keep you posted. I’m sorry if I wasn’t clear in my first post. I won’t start the effexor unless the ami. is not working and then we will discontinue. At this point its so hard to tell if something is working or if I’m just doing a really good job avoiding all of the things that make me feel worse! I guess I’ll find out in pretty short order. I teach and school is starting tomorrow. I have no idea how I’m going to do it. Wish me luck!
I actually seem to do pretty well on Effexor if it is the right dose: 75 mg. I increased to 150 mg over the summer in an effort to get rid of these awful headaches and had terrible reactions. I went back down (slowly) to 37.5 & began Topamax. Now I am at 100 mg Topamax, 75 mg Effexor & Propranolol. I still have terrible headaches-most days 2 migraines a day- but somehow I I am feeling a glimmer of hope. So I guess I am kind of an Effexor success story! Time will tell.
Hi Sarah,
What are your symptoms specifically and what do you think that Amitriptyline has helped with? How long have you been under Dr. Hain’s care?
Thanks,
lisa
HI Lisa,
I have been under Dr. Hain’s care for a short 2 months.
My symptoms like many of peoples are hard to describe so I will do my best!
I have a generalized “dizziness” everyday, all day. This includes a heavy headed-ness, tilting sensation, rocking (back and forth like on a boat) and I feel bouncy when I walk. Patterns are my worst enemy. They seem to “crawl”.
When it gets worse (on bad days) which is triggered by florescent lighting, hallways, (when I walk down the hallways at school I almost feel like I’m somersaulting) any sort of store be it clothing, grocery, restaurant etc. If I expose myself to those things long enough the FOLLOWING three days I pay for it dearly. Everything I feel on a daily basis is amplified. Any sort of head movement sends thing haywire. I feel like I’ve been run over by a truck and everything happens in slow motion. The walls themselves will seem like they are moving in chunks but in opposing directions. I think I covered it all!
I THINK the ami. is calming down my daily symptoms in general, however, if I do anything to trigger one of my “bad” days, there is no help, at least not yet.
Would you mind saying what dose of Topamax you fiished on? Hain has also had me on Topamax for the 3 weeks and wanted me to trial for a month. I have just taken my first dose of 50mg last night and Im feeling pretty broken today. I will stay on for a another month to see if there is any improvement.
Did he take you off for lack of efficacy or elevated heart beat?
Best of luck with Effexor, that is my next drug too!
I forgot to mention,
I also have ben diagnosed with TMJ-- My symptoms of MAV appears the day after a brutal wisdom tooth extraction. As well as some ringing and fullness in my ears. I also experience eustachian tube dysfunction which the Dr. thinks is from all of the rapid weight loss I’ve had since starting topamax. I did have it though for the first few weeks following my tooth extraction… maybe because I wasn’t eating then either?! Who knows, thankfully it only lasts a couple hours in the morning and when the pressure builds before a storm. It sure is annoying though!
Sarah
Luke,
I was at 50 mg. I felt HORRIBLE my first 3 weeks on the medication. I was constantly nauseated, couldn’t eat and threw up more times than I care to count. After that it evened out thank goodness!
I stayed on for about 5 weeks and then we stopped because of the elevated heart rate. I did not see any changes though while I was on the medication.
Good luck to you too!
Sarah
Hi Sarah,
Thanks for sharing your symptoms. I guess since so many of us have zero response to meds, if Ami is working a bit, it might be worth it to go the full way with it. Others on the forum stuck out their meds for 4 or 5 months and got their lives back. I know Dr. Hain loves Topamax and Effexor, but if you are seeing some results, any results, maybe with time you can beat this horrible illness. Instead of changing meds you might even keep increasing the dose of Ami slowly until you can no longer tolerate it due to side effects. Just a thought. I am currently over 3 months of titrating up verapamil and plan to keep going until I reach the highest dose possible my body can tolerate and see what happens. I encourage you to do this because you are already tolerating Ami which is great and you are seeing some results. Sometimes we have to be our own doctors because some docs are very narrow minded in the meds they use. I just really want you to get better (and all of us) and hearing you have some response seems like a good sign to me.
I have to say I would be shocked if Hain would start you on Effexor while you were still on Amitriptyline! This combination is contraindicated usually because of the chance of serotonin syndrome.
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Hey Lisa,
I’ve found a few specialists out there who will use a tricyclic and an SSRI/SNRI together. In the recording from James Adleman he mentions how he will throw in an SSRI if a person is still feeling depressed while treating the migraine with a tricyclic. You’d definitely have to be careful though – as you said serotonin syndrome could be a problem. I was surprised that these two meds can be used together for some. One specialist I saw here in Sydney once wanted me to try Amitriptyline but only after a 4-week washout period from Cipramil.
I’m about to get on the plane and guess what? I have a massive horrible migraine going on. Neck and head feel terrible. :roll:
Sarah – I used Effexor for a short period and felt a little bit better on it, however, it also caused me some side effects I didn’t like and some nasty muscle spasms. The good news is that I ditched it very easily with no fallout. Hope it is a winner for you.
Hey Scott,
So sorry you are having a rough go of things when you are about to take off on your holiday. This illness just doesn’t give us a break when we most want it. Hopefully you will get through the flight okay.
With regards to the med combo, I guess each doc does what they feel comfortable with regardless of whether it is evidence based or anecdotal. If practicing evidence based medicine, I would think most docs would not feel entirely comfortable with this combo. I know I would not. But, as we know, docs precribe what they have experience doing, and apparantly some docs have had no problems with patients on both…yet! On the other hand, I have stated in previous emails that at some point I feel it is important to trust your doc (within reason of course) and try to work together to get healthy.
Sarah – I used Effexor for a short period and felt a little bit better on it, however, it also caused me some side effects I didn’t like and some nasty muscle spasms. The good news is that I ditched it very easily with no fallout. Hope it is a winner for you.
Scott
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What side effects did you have Scott? (If you don’t mind me asking)
I’ve been on effexor for one month now…saw my Neurootologist today…he basically thinks I’m crazy, doesn’t know much about MAV but doesn’t think I have it…suggested I see a psychiatrist. In the meantime he’s keeping me on the effexor…he wasn’t the one that put me on it. I saw a resident when the Flunarizine and Verapamil caused me too many negative side effects and I brought the list of the 5 meds Dr. Hain recommends so he put me on Effexor b/c he said it had the fewest side effects. My doctor is keeping me on 37.5mg for another two weeks and told me to see him then. Should I be asking him to up the dosage?
Scott, if you could explain the muscle spasms that would be great. When I was on the Flunarizine I was having tremors, so I stopped it. But even though they subsided, my hands will start to have tremors…could this just be muscle spasms from the effexor? I’d hate to think that I triggered parkinsons with the Flunarizine.
Otherwise, I have had no side effects from the Effexor…it’s a dream compared to the Flunarizine and Verapamil.
What is this serotonin syndrome you mention? About 15 years ago I was treated for depression with Aropax (an SSRI I believe) and to counter the agitation I felt was also given Prothiaden (a tricyclic which I am incidentally on now at 75mg for MAV).
Hi Lisa Rebecca,
I’m glad you are tolerating Effexor. Seems like that is at least half the battle with these meds… just being able to tolerate side effects. I was wondering, however, is the Effexor helping you in any way, even small?
I’m also really sorry about your not having a doc that understands MAV. Is there any other doc in your area you can see? Maybe a neurologist who specializes in migraine?