Does anybody have any experience taking amitriptyline around 100mg? Has it helped you?
I take a lower dose of 20mg and it has helped me get to 70%. Lower does less than 50mg is preferred for migraine by doctors. I took advice from another user “Turnitaround” as it is a vestibular supressant trying to go with minimal dosage to avoid not being compensated if some injury does exist in the ear.
Thanks for the reply! I went to my neurologist today and he wants me to go up to 100mg. I really don’t see why since I don’t feel like 75mg is helping me. Not sure what to do. Any advise?
I would give it 4 to 5 weeks if it still has not helped time to switch to a different medicine. There is a flow chat on Dr.Hain’s website in the link below you can use that for next meds. Topomax and Effexor XR would be the next stop which has worked for many
Thank you for your help! It’s really nice to hear people’s stories and see what helps people. I have a follow up in about four weeks and my doctor wants me to get an MRA which is like an MRI but it looks at the blood vessels. I’m kinda intrigued by this and wonder what they might be looking for. Have you had any experience with this?
I had an MRI. Nothing interesting showed up there. I even had a VNG and one ear was 20% weaker than the ear and this is considered normal.
Interesting! That’s what my MRI showed too. What have you found has helped you? Sorry for all of the questions!
Wim on 80 mg and it has helped an amazing amount. I now feel like I have a purpose in life and can actually think about work again
I’m glad that’s doing wonders for you @Kate! Was this the first medication you have tried or have you had to search around a bit? I’m afraid I don’t think amitriptyline is working for me at the moment. In fact, I’m still trying to get a solid diagnosis. My neurologist thinks it is either MAV or an underlying psychological issue. I personally feel their is an imbalance in my brain but not sure how to fix it yet
No way! Almost all dizziness is down to an issue in the inner ear (and then the brain getting confused from mixed unexpected messages) You are not going mad! Sure anxiety can exacerbate but that’s chicken and egg.
I do agree that there may be slight vestibular dysfunction in my ears but at the same time I believe my vertigo this time is more of central vertigo, meaning it’s stemming from the brain. The amitriptyline was working for a while but now I don’t believe it is and I notice I have less motivation to do things. So I’m almost hypothesisizing that maybe there is a chemical imbalance making my already mild dizziness worse.
I’m really not sure central vertigo exists. It’s just a hypothesis to keep neurologists employed :). A variable leak of perilymph from the ear together with a disturbance to the pressure regulation of the ear makes more sense to me. The migraines are caused by the sensory upset. So many sufferers speak of ‘pressure’ in the ear. What if this was actually just … I dont know … pressure?!
The problem with the central vertigo hypothesis (and that’s all it is) is it just doesn’t explain spontaneous onset - why do you wake up one day with this horrendous condition? A brain injury?! Nah. And all these symptoms we have 24/7 are somehow constant hallucinations and mostly vestibular ones at that?! Why would they only be vestibular and not any other kind. It’s a load of baloney.
On the contrary we’ve known about Hydrops and Fistulas for decades. I don’t know why theyve fallen down the diagnosis top 10.
Well, people with MAV on this forum experience dizziness due from migraines, and migraines are in fact a neurological condition. Also, I’ve been reading a lot of articles about serotonin and dopamine and I have learned that decreased seratonin levels can cause conditions like migraine. Which might explain why amitriptyline, an anti depressant, helped me feel more normal for a while. It balanced the chemicals in my brain, and I also didn’t experience a headache for a while why they were working. So although there may be an underlying vestibular issue with my ears, I think there is something chemically or hormonally that makes my dizziness feel worse. Of course this is just my theory, but it may also explain why doctors cannot find anything on my MRI, because you can’t physically “see” chemicals and neurotransmitters in your brain. Make sense?
Also, central vertigo is vertigo that can be caused by illness or even migraine. So I wouldn’t necessarily say that it is “made up.” The vestibular system uses the eyes, brain, and ears to keep the human body balanced. So there really is no “one way” to think about dizziness that people on here feel. So I find it very interesting but I don’t think there is only one theory of what is going on.
And there’s the rub. Migraine as a cause for dizziness is only a theory. It’s a popular theory and has become medical dogma, or “flavour of the year/decade”. Previous owners of this crown were ‘Menieres’ and 'Perilymph Fistulas". And notice how they were very careful to call it “migraine associated” not “migraine caused”.
We should all be very wary of dogma.
I think the reality is a lot more complex and involves inner ear dysfunction. Sure, of course there are neurological elements to the issue. I believe that the migraine process and the nature of the root cause (my bet is on a degree of hydrops). may be preventing compensation. The drugs help calm the neuro transmissions and aid the compensation process by helping to block the brain going into some kind of electrical spasm.
But nevertheless there is a change in the vestibular apparatus due to some lesion or injury for which a compensation is required but more difficult to achieve because the issue fluctuates. On top of that I’m very sure the acute vertigo episodes are not migraine as I’ve had full on spinning vertigo whilst on prophylactic meds and off them. They only helped prevent me vomiting not from feeling a spinning sensation. My money is on something going on in the inner ear during those episodes.
What I wouldn’t dispute is that the medical treatment is reasonable. But as another clue to the complete story note that people diagnosed with Hydrops and fistulas also get the very same meds because it helps them. Very suspicious if you ask me. And if we keep backing the wrong horse there will be less investment in research into the ACTUAL root cause. It’s sad to say but the treatment is a very convenient 'take this and you’ll feel better" and let you go home and deal with it … And for years on end!! Who wouldn’t want something better than a nebulous theory?!?
Although I’ve had problems for ten years, ( with varying diagnosis ranging from, a mini stroke through to me being a hypercondric and needing psyciatric help). MAV was only suggested as a possible diagnosis three months ago., after being reffered to UCLH in London. So other than sea sickness tablet, Amitriptyline is the first set of tablets that I’ve been prescribed, although the consultant did say there were others I could try.
Yea, I agree at the fact that there must be some type of injury to the vestibule system, however, I’m just not sure how my vestibular system compares to others. What tests did you go through that you got diagnosed with a fistula? I do not have any fluid leaking from my ear. The only thing that happens is sometimes it will pop on it’s on and sometimes I experience a very very mild pain in my right ear.
No test. Just based on my history. It all started a few minutes after I pointed a shower into my ear. I had severe imbalance for 5 weeks then it all went away. Until 5 months later.
I was diagnosed with MAV, and separately MAV or Hydrops ( and given Amitriptyline). I was not satisfied with the answers and my progress so I saw another surgeon who told me he agrees it must have been due to the original incident and I’d caused a fistula. He told me that Secondary Hydrops then appears later when the fistula has all but healed. The symptoms are the same as MAV and so is the conservative treatment.
As I’ve written elsewhere there is a new test for fistula being developed in Japan but the fistulas heal by themselves in most cases. The tricky part is the Hydrops which occurs with any fistula: the inner ear fluids get out of balance and it can take years for them to return to balance, if at all. The high pressure causes vertigo and dizziness. Basically when you have a leak the perilymph pressure goes down allowing the endolymph part to grow and distend. The trick is for the ear to push back with perilymph and the endolymph area shrink again. I’m not sure if any doctor or scientists knows how to encourage that to happen. Diet is considered one possible option.
The spooky part is that the Hydrops diet is the almost the same as the ‘MAV’ diet. Draw your own conclusions to that one.
Hmm very interesting. I looked up some of the symptoms of a fistula but I’m not sure how much or how little they pertain to me. My balance will fluctuate but I rarely if ever get bad ear pain or pressure. More of just a mild dull pain like right now and a couple of times a month my right ear will pop. My symptoms also seem to fluctuate after my mensturla cycle. Trying to figure out a way for me to get better. Also scared to travel by plane which is sucky since I want to travel.
Dull pain is how I’d describe my feeling sometimes, but other rare weeks I have had phases of sharp pain. Doesn’t bother me. None of this would now bother me so much if someone could tell me that it will definitely go away at some stage! But it has got loads better. Which makes me wonder if there is indeed a level of compensation involved. The brain rocks!