I realize I am asking the impossible and would ideally require a crystal ball for this, as everyone responds to each medication differently. However I would like to get everyone’s opinions on which medicine would be the easiest to “stick out” for a 3-4 month trial?
Over the years of having this condition I first had a doctor who advised me to stop a medication at the slightest side effect (and now I’d kill to have those simple side effects back!) Since then my condition has gotten worse, my body is more sensitive to medicines and I am also hypersensitive to how they affect me, and I am experiencing side effects at EVERY small step of the way, even starting on the lowest possible dose (sometimes 1/4 the size of a “normal” starting dose). All of these negative experiences has definitely given me severe phobia of starting medications, especially over certain side effects. I don’t expect it to be easy, but this process has to be doable. I’m also housebound due to my severe unsteadiness and visual vertigo.
Because of this fear, I’ve realized the only preventative medicines I have gotten to have a “fair trial” with are Zoloft (which didn’t do anything for me, good or bad) and Prozac (which I wasn’t even put on for the dizziness but it did help my light and sound sensitivity a bit).
My biggest phobia is nausea, vomiting, basically any stomach issues at this point. Getting dizzier of course is a 2nd concern, but I realize that may happen as a function of my migraine brain getting used to a medicine and not a side effect.
I don’t want to say what I’ve already “tried” as I said above, they weren’t fair trials. The only medicine I am opposed to based on past experiences is Nortriptyline (but I wouldn’t be opposed to Amitriptyline). I’m currently on Xanax (stuck on it for now, unfortunately, a long story) and a small dose of Gabapentin at bedtime which probably isn’t doing anything but I had too much nausea trying to increase it.
So, I’m very interested in hearing everyone’s thoughts on a preventative medicine that I would hopefully have minimal start up issues with and could re-gain my confidence with! Thank you!
I would start with ami and give it a few month trial. I too have tried nort once and felt like it gave too much activity to my brain and it gave me imsomnia. I believe ami is more sedating than nort(correct me i am wrong) and i was able to sleep well on ami. The side effects wasnt too bad at 15 mg. Some groginess and dehydration in the morning which you get use to to groginess and gets better over time but my throat dryness(dehydration?) never went away. I was drinking tons of water at the time too.
Thank you, this is comforting feedback. In the past I did a few 2 day trials of Ami and my doctor had me starting on 2.5 mg! That’s how crazy low I’ve had to start. I also experienced the dry mouth, it was quite extreme, but certainly not a deal breaker. Yes I have heard Ami is more sedating, which I would also benefit from as I already have insomnia. When I tried it I did get a lot dizzier all 3 times, and I do know some people get dizzier from Ami and Nort and can’t get through it, so I’m hoping I’m not one of those people.
It’s funny how most meds that is suppose to help with dizziness has dizziness as side effects lol. If the side effect is not too bad, then push on and bump up the dosage little by little and take your time.
@Young_Lee Yes that seems to be the case with almost all the medications we’re supposed to be taking to help this condition. And that’s calming advice, yes, I know my doctors also want me to take my time. They’ll just be happy that I actually stay on something at this point!
@GetBetter Yeah I’ve read on here that a lot of people say the initial worsened dizziness goes away in about a week, I’m just already so bad (can barely make it to the bathroom on the worst days) that I’m afraid I won’t be able to handle a week of even worse dizziness, especially if I’m home alone all day while my husband is at work.
@Manatee I don’t mean to scare anyone about Nortriptyline, I only tried 10 mg one time and the initial dizziness was too bad for me to handle. I laid in bed that night after taking it and felt like the bed was tilting up and down and being pulled back and forth. A horrible sensation I had never experienced prior to the medicine. However months or even years later, I forget the timing, I ended up experiencing the same sensations just from my MAV symptoms, but perhaps not quite as severe. I really think it was because 10 mg was too high for me to start with since I’m super sensitive (and with things like cold medicines children’s doses work just fine for me) but Nort comes in a capsule and can’t be made into smaller amounts where as with Ami I can cut the tablet down to 2.5 mg. If I were you I’d see how you feel after the first 3 days, and if you’re not ready to increase talk to your doctor or ask if you could go from 10 to 20 mg instead. 10 to 30 mg sounds like an odd jump to me too. Good luck!
There are many others if Ami does not work…don’t lose heart…when your husband is back from work go for a 100 feet walk outside…baby steps…keep moving…have you ever fallen?
@Manatee I don’t mean to scare anyone about Nortriptyline, I only tried 10 mg one time and the initial dizziness was too bad for me to handle. I laid in bed that night after taking it and felt like the bed was tilting up and down and being pulled back and forth. A horrible sensation I had never experienced prior to the medicine. However months or even years later, I forget the timing, I ended up experiencing the same sensations just from my MAV symptoms, but perhaps not quite as severe. I really think it was because 10 mg was too high for me to start with since I’m super sensitive (and with things like cold medicines children’s doses work just fine for me) but Nort comes in a capsule and can’t be made into smaller amounts where as with Ami I can cut the tablet down to 2.5 mg. If I were you I’d see how you feel after the first 3 days, and if you’re not ready to increase talk to your doctor or ask if you could go from 10 to 20 mg instead. 10 to 30 mg sounds like an odd jump to me too. Good luck!
Thanks everyone, this is helping.
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I had all those sensations when laying down when i closed my eyes trying to sleep during my 3 weeks vacay. Im pretty sure it was due to the fact that i was laying down 24/7 trying to get some shut eye because of imsomnia and constant head pressure was making it worse along with anxiety and stress.
Effexor seems to be the latest drug of choice for both Vestibular Migrain and PPPD. The last highly rated neurologist I saw in November put me on Effexor and gave me Valium to take as needed for anxiety. Past medications that helped were Gabapentin and Amitriptyline, and currently tapering off the Gaba and took my last Ami a few days ago. I’m currently on 75mg of Effexor and symptoms are very mild most days and no noticeable side effects.
@GetBetter I used to do a daily walk outside on the sidewalks with my husband when he got home from work, usually only 5 to 10 minutes. In the past few months I have been able to do it less and less frequently. I haven’t fallen, but feel such tremendous motion sickness when I stand up and am so wobbly he has had to hold me up in the apartment sometimes. I have almost fallen a few times, especially sideways. My tilt sensation gets so bad my upper half of my body juts out to the left, not centered over my legs at all. I don’t just not walk when I “don’t feel like it” it’s really a matter of not walking to prevent getting injured from falling or feeling so much worse for the rest of the day and following days making me unable to simply move around the apartment to get food, use the bathroom, daily essential functions of living. If I do feel a few hours of feeling slightly “better” I can walk with not much problem, but those times are few and far between now. Used to last weeks, then days, now in the past 2 weeks it only seems to be hours.
@Ron_Denning Yes I know Dr. Hain is a huge fan of Effexor. Unfortunately I am terribly afraid of SSRIs and SNRIs at the moment, especially since I’ve recently had some major trouble trying Lexapro. I was on Prozac for a few years but a vestibular specialist took me off of it because it “wasn’t a vestibular migraine medicine.” I’ve heard many horror stories about Effexor, and even when I mentioned it to my psychiatrist last year (as it does seem to help a lot of people with the dizziness) he wanted to avoid it for me. I am glad you’ve had success with Effexor, as well as Amitriptyline and Gabapentin. If I try some of these others and don’t have success Effexor may be a last resort or choice later down the line.
@Jess09, I was on a low dose of Prozac for 24 years (not for dizziness) and just switched from it to Nortriptyline. I had no side effects with the Prozac once I got used to it. I’m hoping that I’ll have good luck with the Nortriptyline.
@Manatee Thanks for the feedback! I was on Prozac for 3 ish years and only experienced some initial stomach upset the first few days, but wasn’t able to increase above 10 mg because the stomach upset got worse. But once I was on the 10 mg for a bit I was fine. I don’t think it helped the dizziness much, but 3 weeks after I was taken off of it I noticed my sound and light sensitivity increase A LOT. I tried to go back on the Prozac once I noticed that but the stomach upset was worse and at the time didn’t seem worth it. I wish I had kept going to get back on it though, in retrospect.
It claims it has less side effects than the original Topamax, and I’m wondering if anyone has experience with that? Has anyone been on both the old Topamax and the new extended release? One of the options my new neurologist gave me was extended release Topamax.
I tried the new Topamax and couldn’t tolerate it. I’m on a cocktail of microdoses and it’s working:
MORNING
37.5mg Venlafaxine (Effexor) has the least amount of side effects - none for me at all and curbs hunger which is a plus!
EVENING
15mg of Ami, great for sleeping, makes me a little carb-hungry
25mg of klonopin (great for just calming the whole system down) addictive, tho not for me
25mg of trazadone (no side effects at all - just helps with sleeping)
thanks to those drugs and this site, i’ve got a new job, am doing all kinds of traveling, even having a bit of wine and lots of chocolate these days! am getting ready to get back on on my public speaking horse! fingers crossed!
may i ask you why not bump up the Ami and lose the trazadone completely…ami can help with sleep as well…you had added support from Klonopin as well…
