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Attempting Amitriptyline at Various MAV Stages?

Hi all- I feel I have an impossible decision ahead of me. Quick background, have had MAV (mainly dizziness/imbalance with less frequent headaches) for 6 years now. For the past 1.5 years I have gotten worse, have become housebound, can barely walk without assistance and cannot do any household chores. I have constant dizziness, frequent head pressure, frequent eye pain and occasional headaches, and days in a row of blurred vision, among many other symptoms that come and go.

Anyway, I tried Amitriptyline 3 times last year (back when the doctors gave me a longer lasting but not a vestibular suppressant benzo to try to help along with it) and each time the dizziness increased significantly, and I never felt I could get over the “hump” to where the side effects would settle down, especially as I am home alone all day long. However, the increased dizziness it caused back then is basically where I am right now on a NORMAL day. My question is, if I try the Amitriptyline again (this time I do have a better benzo to help, a vestibular suppressant Xanax) will the dizziness get even worse than I feel? Is the initial ramp up in symptoms proportional to how one feels at baseline or is there a limit to how much it can ramp things up?

My other option from the doctors is to try Lexapro for the 3rd time, which gave me nasty nausea and heartburn to the point where I couldn’t eat much, which made it in turn harder to tolerate the medicine. I tried it a 2nd time with Zofran (an anti-emetic/anti-nausea med) which helped the nausea but seemed to react strangely with the Lexapro in my head and gave me a severe headache and lightheadness and over 24 hours of a sense of impending doom.

Right now the doctors want me to try either of these again, and I can’t seem to make myself do either. I’m trying to figure out which of the two I could possibly tolerate long enough to get through the side effects. I start both at VERY low doses, most people would probably not feel a thing from the doses I start with but I have become very sensitive to medicines. I have had so many bad experiences from trying medicines I feel like I cannot touch this decision with a 10 foot pole. But in the meantime I keep getting worse and worse as the months go by and I know I need to do something.

Thanks in advance for any input! (And yes, before anyone suggests it, I have tried Nortriptyline as well and that made me even dizzier than the Amitriptyline)

Well, as you have seen me post many a time before, I’m a big fan of Amitriptyline.

It started working within days for me, but at 20mg I felt a lot of relief such that some days I no longer felt dizzy. However, breakthrough symptoms and relapses happened in anycase, but generally I got my life back.

Side effects for me were threefold:

  1. Dry mouth … but this went after a couple of months
  2. Vivid dreams/nightmares … rare but definitely not ‘normal’ :smiley:
  3. Slower bowel … much better after a year on the drug but definitely the worst side effect.

HOWEVER, none of these side effects come anywhere CLOSE to the symptoms I had before taking it:

  1. Migraines - i’ve had ONE since starting Amitriptyline
  2. Rocking … used to have visual hallucinations of floor rocking … this has gone since taking Ami, but sometimes I get a breakthrough feeling of swaying very slightly.
  3. Nausea - before Ami I used to get HOURS of nausea every few days … since taking it I sometimes get it in the mornings but very rarely indeed and usually comes as a phase for a few days, then disappears.
  4. Inability to tolerate TV/video/computing - on 20mg I can compute all day! :man_technologist::slight_smile:

Doesn’t do anything for:

  1. Tinnitus

Helps but doesn’t eliminate:

  1. Vestibular attacks. Spinning feels less spinny but you spin nonetheless. Rocking feels a lot less rocky, but you rock sometimes nonetheless.

I think you have to accept that any med comes with side effects, its not like you are back to normal, and breakthrough symptoms come with the territory - a nominal dose won’t mask (but may dampen) EVERY bad sensation and indeed i’ve had some really bad vestibular attacks including spinning and one ‘magneto head’ incident whilst on Ami, but GENERALLY it has made life much more bearable.

Do not expect perfection from any med, but persevere and see if ON BALANCE (lol) it makes things more bearable for you: quite frankly I can’t imagine a life WITHOUT medication as it was so desperately AWFUL!

I accepted the med was not perfect and indeed aimed not to take too much in the hope that one day if things calmed down I could come off the med and it would be easier to do so from a lower dose. I also didn’t want to mask all the symptoms so I could keep an ‘eye’ on my condition more easily.

Oh and I knew instantly 30mg was too much for me - it made me dizzier, so that’s how I settled on 20mg. I didn’t bother titrating up and waiting a few days to see if this subsided, I just simply didn’t bother … just remained on 20mg and have not regretted it.

Good luck Jess!

James

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@turnitaround Hi James, thanks so much for all your help and wisdom on Amitriptyline. Yes, I do know you’re quite the advocate of it. I would love to have the success you’ve had with it, and to me the side effects you had would be completely fine, I’d even be relieved if that was all I experienced. The problem is, with any medicine I’ve tried, I experience any side effects on top of my current dizziness and MAV symptoms and even then those regular symptoms are increased as I’ve gotten increasingly more anxious with each medicine trial. I can’t seem to get past the side effect stage with any medicine these days. When I first was diagnosed with MAV I did, was on Zoloft for 3 to 4 months and felt no side effects, but no benefit either. But since that time I have been on a medicine that really seemed to mess up my stomach, and I haven’t been able to tolerate medicines (even over the counter cold meds and such that I’ve taken my whole life) the same way. There are a bunch of foods I can no longer eat without stomach upset and/or heartburn.

I guess I’m hoping to find someone who has tried Amitriptyline a few times over varying degrees of MAV symptoms. I realize, in general, that I’m asking an impossible question as each medicine will effect each person differently, and some medicines seem to effect people differently each time they try them in their life. Thanks again!

My first question to you would be: did you do all the lifestyle adjustments before trying the meds? Because that (like quitting caffeine) has been a major factor for a med to be able to put a dent in your symptoms.
Maybe you have/had/you did.

For me, i was always allready so sensitive to all meds, even regular painkillers or really just anything, only able to tolerate babydozes of anything. But when i arrived at the very bad MAV-stage, where it finally got diagnosed, it was even worse. And mentally the idea of taking meds was freaking me out. I chose the road of no-meds, and heavy-duty lifestyle changes, riboflavin and supplements, and anything that would help my system to calm down. (Yes meditation too.)
It took serious effort and it took time, it is no quick fix. But i got fairly good results so far. And instead of spinning further out of control, i reversed that and slowly build a better brain-health.

I have seen fellows who were in a bad state try every med, and getting worse with every trial. And then at some point there is nothing left med-wise. For some, at that point, the same route starts that i took. And then finally their system starts to calm down, slowly, gradually.

But as you talk and think meds in yuor OP, i suppose that you rather want a quick(er) way “out”. (Never really out, hence the “…”)

I do think that you ask a good question though: chances are that it does make a difference at what stage of brain-mess, and/or nervous-system-irritation one is, for what effect the meds will create.

And then there is this very huge factor of how everyone seems to respond differently: as you state in your last lines… Meaning it is hard to predict. One can only try. Trial and error.
I would just make sure i would get enough rest and as much resetting of your system as possible, in between trials.

Goodluck and all the best!

@Lijne Thanks so much for your reply! It’s nice to get more opinions on this. I didn’t exactly do the total elimination diet on here, as doctors never suggested it to me as this all first started. At one point I was told to cut out chocolate and cheese, and I never noticed a difference there, in fact felt worse. As far as other sources of caffeine beyond chocolate, I don’t drink coffee or soda or any tea besides herbal decaf (and that is rare) and also don’t drink alcohol. I eventually did try, discovered by accident, eliminating nitrates/ites from my diet, and that did reduce some of the dizziness sensations, but still not nearly enough to make me functional. I tried to add them back in about 2 months later and felt horribly worse. So that elimination was a nice discovery. I have done copious journaling of diet and symptoms and haven’t seen anything else significant, but I realize that is difficult. I do know that eating fried foods seem to give me regular headaches, as well as iced tea, so I’ve cut them out.

As far as other lifestyle issues, I already have a regular bedtime and waking time. Unfortunately the dizziness prevents me from falling asleep for a few hours some nights (I get the dizziest lying down) but it’s fairly consistent so I still end up falling asleep at the same time. I do struggle with insomnia from time to time but some of those days the dizziness is better the next day.

I don’t need a quick way “out,” at this point I just need to be on the path of getting out. I am thinking I will need a medicine as my condition is so severe (been house bound for a year and a half now, muscles are de-conditioned, I cannot drive, and have trouble walking out of the apartment without help). I do go on a daily walk most days with assistance when I can manage, but it’s not very long. I have dizziness 24/7, varying in different sensations but it’s always there. Also a lot of blurred vision that comes for a few days at a time then leaves.

I tried the Migravent supplement once before, a mixture of a bunch of things, and I think I had an allergic type reaction to the butterbur. I started trying some of the other ingredients separately. Was on the CoQ10 for a few days but was getting headaches each night after the dose. I could have been in a headache stage so I should try that again sometime. But I’ve heard most people seem to get the best results from the Magnesium, so if I try more supplements that will be what I do next.

I’m having a lot of issues with the whole trial and error process, which I realize is what this condition is all about. Each trial is making my fear of trying medicines worse for sure. I didn’t realize how bad the fear was until yesterday. I set out to try Lexapro (for the 3rd time, only lasted 1 day on it both times before) and had 2 hours of uncontrollable trembling, sweating, crying, etc, and got myself so rundown after all the worry and stress that I found the trial was destined to fail if I did it that day, so I didn’t. I’ve seen different therapists, some that have tried the CBT therapy, but none that were that good and it never helped me. Also, no one specifically zeroed in on the medication fear part, which really has just gotten A LOT worse.

What types of supplements are you on other than the riboflavin? How bad off were your symptoms when you started the supplements? Thanks so much for your input!

It’s times like this after reading these heart breaking stories of the people who are so much worse off than me and home bound. It was bag enough for me 2 years ago being off work for 3 months.
I have now been off for the last 3 wks again, and it’s all about that trial and error scenario again.
Since the end of March i’ve been on 10mg Nortriptyline 4 tabs daily although could max out to 5 if needed. The last 3wks ive increased to 5 and am also now on Prochlorperazine 5mg. After the first wk, my symptoms got worse like 3 years ago when I was house bound because of the spinning vertigo 24/7 and the nausea feeling that you can’t get away from. After increasing the Prochlorperazine to 2 tabs 3x daily, my symptoms got less and less but after 3 or 4 days I started struggling with sleeping and got very fidgety with my arms and legs which I then reduced back down to 1 3x daily. The vertigo has now come back so I’m trying 2 tabs twice daily and 1 in the evening to see how that goes. I too was told at the very beginning to rule out known triggers. These included the obvious cheese, chocolate, caffeine aswell as ones i wasnt aware of such as Chinese food, citrus fruit, milk, cream and processed meats. After 6 months, i slowly re-introduced one at a time and it is actually the citrus fruit for me. It’s surprising how much lemon juice is in both food and drinks.
At my request asi’d read so much about it, i’ve now been referred to a specialist who deals with vestibular retraining. It maybe worth reading up on it. I will update once i have been.
I hope there is an answer out there as it’s through reading these forums where you realise how many people suffer and, for some how extreme their suffering is :angry:

@helsbels80 Being off of work is pretty bad, no matter how long. There are some here who can still work. In fact, I worked for the first 4 years of my MAV, and had a neurologist who had me do trivial trials of the MAV meds, but he had me stop them if I had any side effect that was NOTHING compared to what I’m suffering with now, MAV or side effect wise. That doctor was just interested in keeping me functioning, putting a bandaid over it, and not solving the problem. I unfortunately didn’t know that that was what he was doing until it was too late.

Are you saying that you’ve been on Nortriptyline and it helped for awhile and now you’re getting worse again? That is one of my biggest fears. Yes it will be great if I can find a medicine to help me get better, but then knowing it could come back at any time, that has to be difficult to deal with as well.

By vestibular retraining do you mean vestibular rehabilitation therapy (VRT)? I did it once in the first few years, but honestly as dizzy as I was I don’t think I was bad off enough for it to help me. The therapist eventually had me stop as he said he couldn’t get me any better and thought something else was going on (every test on everything has been normal for me, there is no other underlying cause) Now I could possibly benefit from it, but I think I’m too bad off and without a medicine I would feel much, MUCH worse and be unable to care for myself if I went to therapy sessions. Some people say it works for them and others say it makes them feel worse. The therapist I saw did say I would feel worse before I felt better. That seems to be true no matter what treatment is tried, and that is just awful, unfair, and not right.

Hi Jess thank you for your message.
You read right, the Nortriptyline did work for a time on it’s own. That was once i’d come off my combination pill (known for not being good for migraine sufferers) and since i’ve been off that my headaches are 1 in a few now. Also, I was on Gabapentin as well as the Nortriptyline when I saw the Neurologist at the end of March, he said they would’ve been working against each other so, took me off the Gabapentin and that was when I noticed a my symptoms disappear.
I had a really bad nights sleep again Tuesday night and again last night, which I believe could be where I doubled my dose again with the Prochlorperazine, so instead of reducing my dose again and my symptoms getting bad, i’m trying the higher dose in the morning and the lower dose lunch and dinner time. I started that yesterday, so will see how I get on tonight as to how my review goes with the doctor tomorrow.
On a seperate note, I did some research yesterday and it may sound silly, but I think we’d try anything if it helped us wouldn’t we?!! There are a couple of ingredients in yoghurts and flavoured water which are known for being linked to migraine, dizziness, visual disturbances and even being fidgety (the latter which I thought was a side effect from the meds). Namely Aspartame and Prenylalanine and Acesulame. I stopped yesterday so i’m going to see how I am in another week.
What meds are you currently on and what stage are you at with the Neurologist. Are you still seeing them?
It’ll be interesting to see if I’m the same with the VRT. I think that is probably the abreviated version of what I was talking about. I was hoping that that would really help me moving foward in all this.
I just don’t get where this condition comes from. There’s not alot of knowledge out there for people like us, but they don’t tell us the cause either do they?

Hi Jess and others.
I said I would keep you updated.
Through my own research I found out that another trigger is Aspartame which is an artificial sweetener that I found in both the flavoured water I was drinking daily and also the yogurts I was having daily too. Both Aspartame and Acesulfame both are linked to headaches/migraines and dizziness/vertigo/visual disturbances. I stopped last Wednesday and on increasing Nortriptyline to 6 10mg tabs daily and Prochlorperazine 5mg tabs to 2 in the morning, and 1 both at lunch and the evening (seems to be enough to make a difference but not too much to affect my sleep) I’ve noticed a difference. I didnt get my first dizzy spell until after lunch, but it did continue for the rest of the day and today, i didnt experience anything until this evening. This could be either due to stopping the known associates to Aspartame and/or Acesulfame (which Ive found in fruit squash drinks so far), and/or the increase in meds. My referral for the VRT was done on the 20th but was chased yesterday as I’ve not had an appointment yet.
I’ve also learnt that where I had a brain tumour removed from the part of the brain that affects your balance when I was 16, that is the same as a brain injury and is the cause of the MAV for me. They advise VRT to help my brain retune. Interesting what we read ourselves, when infact we should be told this in the first place

Remain positive - the brain is supremely adaptive … I saw a case of a young girl who had to have HALF her brain removed due to an extremely nasty infection. By her 15th birthday she had completely compensated and you wouldn’t have been able to tell had you met her … best of luck!

Thanks James. There are definitely some amazing stories out there for us to focus on :blush:

Is Prochlorperazine still helping you and how often do you take it? It seems everyone says to keep it as an abortive and don’t take longer than a couple weeks at a time. I tried 10mg of it once and it made me quite dizzy and nauseous (which I’m taking it for), so I’m going to try 5mg tomorrow to see if it makes me feel worse. My pharamacist said to not take it if it makes me feel bad, given it’s an abortive not a preventative (if it was the latter then I would try to push through).

It’s not a preventative. I wouldn’t say it’s an abortive either really. It’s just useful to control nausea/vomiting. For very short-term use. You’ll find quite recent discussion on it if you use the Search facility. Helen