@Heart I definitely recommend that if you try the supplements you try one at a time. My doctors have me trying one thing at a time. At one point I didn’t and I tried a supplement called “Migravent” which basically is a combination of a lot of the supplements mentioned on this site. I got a scratchy throat (like I wanted to put my fist down there and itch it with my nails bad!) immediately after trying it and could guess which ingredient it was but wasn’t sure. I need to try each one individually first. People who aren’t sensitive probably don’t need to be this cautious, but for those of us who are it’s worth it. That way too, you may find that some of the ingredients help but not all, and you won’t have to pay for all of them in one supplement.
Thanks jess09. I thought if I just try feverfew first on its own and if I’m ok with that then I could add magnesium and then add co q10. I’m very sensitive to everything it seems so yes just one at a time.
@Sarah356 You’re welcome, and I don’t mind if you show my response to your doctor. Medication sensitivity is a real thing. I’ve read that some people just have a different metabolism that absorbs the medications so differently from most people that even small doses can have effects, both positive and negative. I should have clarified for @turnitaround especially as well as you Sarah that I have become MUCH more sensitive to ALL medications in the past 1.5 years that my MAV has gotten much worse. Things that I took all my life like cold medicines, antibiotics, and anti-inflammatory NSAIDS, things that NEVER gave me trouble, are now giving me trouble. The doctors have me on Prilosec in a capsule form, and one time a few weeks ago the manufacturer changed. Exact same medicine but there were some different ingredients in the capsule and the capsule was a different color and I had a reaction to it (or it just didn’t work as well for me. My GI doctor did say some brands work better/worse for some people).
Also, as far as dosage goes…my doctor who’s an excellent psychiatrist and knows A LOT about the pharmacology of the medications, says that taking a lower dose is the best for side effects. Starting out low, getting the body used to it, and then trying to increase. If I start higher he says the side effects (if I have any) will be worse or there will be more of them. When I take them that low I’m not even judging if there’s any positive effects or if my dizziness is “better” at that point. I know that they can take weeks to months (depending on the med) to kick in and I’m just going for a slow, hopefully smooth, adjustment period. Actually, when I took the low dose of Lexapro I did notice a calming effect from just the first small dose. It was nice to feel something positive on day one.
When I first got MAV almost 6 years ago now I didn’t have a great neurologist. He basically had me stop any medicine that gave me any sort of side effect. Back then the “side effects” I felt were NOTHING compared to what I am getting now while doing med trials, so I wish I had given some of the meds more of a chance. So, I tried Topamax while I was under his care, but my brain felt so slow and I felt so “stupid” on it. It’s nicknamed “stupamax” or something for a reason. I was working full time at the time and couldn’t stop my job (hadn’t worked there a year couldn’t apply for medical family leave, used all my vacation and sick days from being dizzy, also had just gotten married & my husband still had one semester of school left so I had to work) and there was no way my brain could function properly at work on the Topamax.
As far as Amitriptyline goes, I never felt any numbness by cutting the tablet into quarters. I’m glad I didn’t. I had extreme dry mouth but that was it besides the horrible increased dizziness. It was so bad I wouldn’t have been able to care for myself during the day without help.
One thing I can say is I really don’t have much anxiety anymore. I’m pretty much used to the sensations MAV brings. If I get a new sensation I may get anxious for a bit but I’m much better at calming myself down faster. I do have anxiety over trying new medications though. But that’s just one specific anxiety, not overall anxiety (as my psychiatrist agreed with).
I have removed what I originally posted here. For anyone who saw it, I still think what I said was right, but in hindsight this probably wasn’t the right place to say it.
Careful there Sarah. MAV medication is NOT ototoxic. Neurologists would not knowingly set out to damage your hearing!
Here is Dr. Hain’s page on the subject:
There are a few dodgy websites stating things like ‘Amitriptyline increases tinnitus’. I think claims like this are incredibly unsafe as it’s a drug routinely prescribed to people with vestibular and auditory conditions, conditions which regularly worsen to include tinnitus as a symptom no matter what drugs you take.
On the contrary many neurologists actually believe antidepressants help the brain cope and mask tinnitus and they certainly have a positive effect of reducing anxiety.
I too could post links to pages (and threads of conversations) that say differently, but I don’t want to do that. It is not my intention to frighten anyone on here who is being helped by their medication. I did also say “Probably ok for the vast majority of people, but not for me.”
I see no other explanation for what keeps happening to me. Not everyone reacts to medication the same and even if something is not strictly classed as ototoxic it can have an ototoxic reaction in some people.
I want what you said to be true but I just don’t think it is.
If you are convinced that Amitriptyline is ototoxic then it would make sense to stop it immediately as I suggested earlier and discuss it with your doctor. You will then be able to see if your ear symptoms improve. If they don’t then it probably wasn’t the fault of Amitriptyline.
Honestly? Because I really didn’t want to give up on something else and be back to square 1 again!! I didn’t take it last night and already the ear pressure seems to have eased, but the dizziness seems to be threatening again.
I don’t single out Amitriptyline specifically as being the cause of my issues, I think it began with me not realising I should have stopped Topiramate (or at least lowered the dose) straightaway when I got into trouble, and I now seem prone to ear related side effects from pretty much any of these medications. That is why I concluded that some ototoxic damage may have occurred and be the reason for the following sensitivity.
I know it wasn’t helpful to label everything ototoxic on a board where people come for help, especially when this particular problem seems to only affect me, which is why I took that other post off.
I have just read hains perception on migraine,very interesting, he states migraine is not a disease but a natural human response, worth a read if anyone hasn’t read it!
Yes. I believe that too. But moreover I hypothesise that Migraine state is when your brains learning algorithm is pushed beyond its normal envelope.
I was really intrigued on hains perception of migraine and dizziness, I never got to read what treatment he uses to break the cycle, wish my cycle would bloody break
I can relate to that. I thought the side effects I had with Propranolol were extreme at the time. But compared with the next 3 they were mild!! I could at least stay on that.
I too had some cognitive issues towards the end of my time on Topiramate, but it was the ear trouble that caused me to stop that one.
Definitely, a bit of encouragement goes a long way. I had SE’s from Amitriptyline at 5mg (including a fast heart rate), As for benefit… I am not sure if it is what stopped my dizziness on day 3 or if I was just starting to get better anyway, but I wouldn’t be surprised if was the medication.
I know that I probably look silly saying this but since going to 1mg I didn’t take it for one night, (I was fed up with the ear pressure and ready to give up), then I did again tonight and I am SO tired. It is good because I have to get up at 6am for work (first day back after 10 days off). But I spent most of the morning in bed (cause I had a headache), there is NO WAY I should be tired at this time. Yet I have just dozed through some of Crimewatch. I am hoping to sleep well tonight!!
Thanks for all the info. It sounds like you have a really supportive doctor.
I haven’t taken Amitriptyline for almost two weeks now and the facial numbness is back so I conclude that it wasn’t totally (at least) due to this drug.
Sorry to hear it’s back Sarah but glad to hear you are making progress on elimination.
Thank you. It is almost one week not two (I got that wrong), but even so, it is too long to blame Amitriptyline.
@Sarah356 Sorry for my lack of responses I am fickle with this site, but it’s mainly due to what my eyes can handle on a computer. And there are days where I just can’t read about this horrible beast of a condition anymore.
Sorry to hear the numbness is back. Have you tried any new medications since then, or re-tried the same ones? I’d like to try Amitriptyline again but my doctor thinks (who’s a psychiatrist not a neurologist so he doesn’t know much about MAV at all. My neurologist doesn’t care what I try at this point as long as I keep trying something) that trying Lexapro for a 2nd time would be better, since I did feel some relief after one small, small dose. He wants me to try to attack any side effects ahead of time. Since I got bad heartburn and nausea the first time with Lexapro, he said to take a Tums with it this time, and maybe the anti-nausea med Zofran if I feel I need it. (I’d rather wait to see if I get bad nausea though as I ALWAYS get a headache as the Zofran wears off). Just like today’s medicine world, treating side effects from one medicine with another medicine. He’s hoping I won’t need the tums and zofran for more than a week, as he’s hoping I will feel some benefits of the medicine by then. Who knows, I rarely last as long as a week on these awful medicines. I know I said I “want” to try Amitriptyline again, but it made me so much dizzier so I really do go back and forth with what I want. If I felt stronger about it I would tell the doctor I’d rather try the Amitriptyline again next, but there are arguments for and against it so I’ll go with what he says for now.
Hi Jess. The numbness is only slight atm. I did try Pizotifen, well… I took ONE tablet (I know )!! I was told it was the least ototoxic, so I gave it a go, but after one tablet my left ear felt more blocked than usual and I couldn’t stop eating all the next day! That might just be because I am a pig lol, but I don’t remember when I last had such a compulsion to eat and eat. Considering all of the weight gain tales that come from people on this I wasn’t keen to pursue it anyway. But my top priority is to stop whatever always seems to happen with my ears.
Why don’t you ask upfront if you can try amitriptyline if it doesn’t work out with the Lexapro? That way you already have something in place so it won’t feel like the end of the world if it doesn’t work out with the Lexapro. It might take some of the pressure away.
But also, if you have tried amitriptyline before, don’t you have some left over anyway that you could try if you decided that was what you wanted to do?
Like you I tried to minimise side effects, I started using natural supplements (antioxidants) to try and stop any ear (ototoxic) reactions.
However I have also tried St Johns Wort (which is not meant to be ototoxic at all) and had some of the same thing so I do wonder if something else is going on as well.
I hope it works out for you, whatever you decide to do.
@Sarah356 I wish I could try Pizotifen as a lot here seem to have success with it. But it’s not available in the US. I know at this point my neuro will be happy if I try any medicine, so if I wanted to try the Amitriptyline I can. But my psychiatrist (the neuro is letting him handle the anti-depressant scripts, even though it’s for MAV) thinks I should try Lexapro again since I’ve tried Amitriptyline 3 times and haven’t been able to stay on it. My Amitriptyline stash has expired, it was prescribed over a year ago at this point. Thanks for the well wishes!
Hi Jess. [quote=“Jess09, post:98, topic:13551”]
I wish I could try Pizotifen as a lot here seem to have success with it. But it’s not available in the US.
Annoying isn’t it. I wondered about trying Flunarizine at one point but apparently it is not licensed in the UK. A lot of people do say Pizotifen caused them to gain a lot of weight. I took ONE tablet and wanted to eat all day! Are you going to try the Lexapro again?
@Sarah356 Sorry I’m just getting to this, I am continually off and on this forum. Sometimes it’s a great help and support and other times I get more scared by hearing some of the horror stories on here. I tried the Lexapro again about a month ago, with an anti-nausea med Zofran. The Zofran prevented the nausea and heartburn which was nice, but it seemed to interact with the Lexapro and made me feel all out of it, lightheaded, and gave me a horrible headache. I also had an awful panic attack 4 hours into the Lexapro dose this time, and it left a sense of intense fear and doom that lasted over 24 hrs. Unfortunately that night I came down with a horrible cold/flu like virus and I could tell by the next day there was no way I could handle both so I stopped the Lexapro, yet again. I was so glad I did, the congestion wreaked havoc on my inner ear and it took me 2 weeks to get over the virus. It was one of the worst flu viruses I’ve had in about 7 years, I was very weak for a long time. So now the doctor still thinks I should try Lexapro again, although I am very against it. That intense fear was so scary, and my thoughts were all dark and bitter and I don’t want to experience that again. I’ve had panic attacks before, usually secondary to a bad dizziness spell, but NEVER did any have any sense of doom with them. I could also try Amitripyline, which I tried 3 times last year. I have no idea what I’m going to do, I am thinking neither are good choices for me. They may help with the dizziness, eventually, but at what cost to my stress levels?