Pregabalin or Amitriptyline that is the question

Hi,
I have been taking Propananol for MAV for three months, originally this helped me a great deal but as i have become accustomed to the medication it has become less effective to the point I’m not sure if it is doing anything any more or if I shall continue it.
I have however had a taste of life without migraine for nearly two whole months out of three years of constant chronic migraine and I want more of that life.
I took one 10mg Amitriptyline tablet as this was next on my list to try,I slept like a log but was groggy and found the day after very hard work. This put a huge strain in my house as dropping kids off and picking up and working was so difficult for me . My wife insisted that I stop immediately. So I did.
My neuurologist then prescribed Pregablin, I had heard people had enjoyed good results so i have been on this medication for nearly 4 weeks. The first two weeks at 25mg twice a day were difficult but when I upped dose to 50mg after two weeks things got much better and the medication started working.
I have now however read more and more on this drug and although it is working there is a lot of controversy about the drug, long term memory loss (brain synapses), addiction etc. I’m okay with certain amount of risk as I have felt so poorly for so long but I can’t help thinking I should have given Amitriptyline a longer try. It’s had great prevention for MAV for many people and has been around a long time and is known to be safe so this is my reason for wanting to swap.

My plan it to taper of my already low dose of pregablin and begin to try Amitriptyline. It seems to be safe and doesn’t have the controversy that pregablin has. If amitriptyline doesn’t work I could always try pregablin again. Or do I stick with pregablin I have started that works and stops migraines? I’m just worried of longer term issued associated with it and the short term memory loss is alarming to say the least
What do you think?

I am on Amitriptyline. It works well with tolerable side effects like weight gain and drowsiness. I had a minor migraine breakthrough two days ago and have been feeling wobbly ever since. I have seen many good days where i am at 80% and above and currently gone down to more like 60%. Point in case being it is not that the drug has worn out but the condition makes a comeback or morphs into something else. So expecting to be 100% just cos of drugs is unrealistic. My guess is the Propananol might still be working, you are in a rough patch and you will come back to your base line.

Also i saw benefits on Amitriptyline within the first week for my migraine. Around week 6 i saw major improvements and got my sanity back. So these drugs take time and sometimes it is hard to be patient but we have no choice but to give the drug a fair trial.

Did you try the diet along with the meds and more hydration and a regular schedule. Together you might get to 90% like i have on some days

Hi.
Sorry to hear that you have had a bad spell however 90% sounds great and I will take those odd. Only in my wildest dreams would I expect to get to 100% either through medication or otherwise!

I had a bizarre reaction to propranolol, a good reaction in that within a few days,on a small dose I had huge energy increase and mental clarity. I went from resting in bed whenever possible to having so much energy and not needing much sleep. In a month I decorated the house, boarded out the loft, started running again as well as seeing friends and family - anything I wanted. Then I think I became used to the drug over the coming months and the elation dampened down. Now, maybe there is some preventative effect, however the imbalance, the light and sound sensitivity and all brain fog and lethargy came back gradually and my “rough patch” has exceeded 11 weeks now.
I suppose in comparison to the previous months/ years to put my symptoms in perspective it is nowhere near as bad as it has been. I am sure you will know yourself how amazing it feels to feel better from the entrapment of Vestibular Migraine.
As far as diet goes I have made some adjustments, I drink very little coffee and minimal alcohol, cheese, citrus etc now but I have not committed to the full migraine diet.
Many thanks for you input. Greatly appreciated.
I wish you back to 90% again as soon as…

Dr Surenthiran seems convinced that the biggest setback people have (myself included) is that as soon as they start to feel somewhat better on meds, they dive back into life at full speed, when in fact they have not healed yet, they have only just started to improve. in other words, the healing is not robust. a bit like going back to playing football as soon as your broken leg stops throbbing. it won’t get better unless you rest it. The meds, according to Dr S, are like the plaster cast - they don’t cure the problem, but they somehow protect it enough to let it heal. that’s the theory, anyway.

it’s very hard, but i think that you have to be calm, slow, and pace yourself throughout a long recovery period. it is not surprising that you had a relapse after leaping into action on the meds. i always make the mistake of trying to ‘catch up’ on the good days, which then triggers another bad day. my wife tells me to take it easy. it’s hard to take good advice sometimes!

Dr S’s explanation is the brainstem gets irritated, and the irritation is a vicious circle. you have to calm it down (meds) to allow it to heal. but don’t overdo things before it’s fully healed - which will take months and months. possibly years.

hope that’s helpful…?

On the neurological side that’s true. And my guess is for most it takes a couple of years. And it’s VERY important to be active, don’t become a recluse, mix up your environments including visiting the mall and hypermarket and try not to over do the meds. If you have little dizziness and no migraines you are taking enough.

This is something that I had never thought about. When I was diagnosed with VN the advice was to push on through no matter what so this is the method I took. I push and push to try and get better but what you have said does make sense. On good days (let’s hope there are some to come) I shall be wary of doing too much.
Thanks for planting this seed.

I agree with James and gidlabu. Stay active. FWIW i was diagnosed with VN initially. Told i was not compensating and suffered this nonsense for an year with repeated vestibular theraphy. And then I started getting massive brain fog, blurred eyesight and hoped on the MAV train. Give the propronolol some more time if you truly dont sense any relief in a month’s time talk to your doc and start trial-ling Amitriptyline.

Hi again,

I was diagnosed with VN after caloric testing. I remember it well. I had to lie down and recall names beginning with A, then B etc while they blasted air in my right ear. The idea being that they can track on your nausea and also distract you maybe? Anyway it was unpleasant but they measured my occulur reflexes while test was being done, I could feel my eyes darting the worse it got and it was awful. When it came to the left ear I felt no nausea and was capable of holding a conversation all way through the test. I knew this was bad news as the Vestibular nerve obviously wasn’t affected much. I also had VEMP tests 3 years later by neurologist that helped with my VM diagnosis. I’m pretty sure that i started out with VN before MAV diagnosis. I had some more tests done on my vestibular function recently that showed excellent compensation which I was thrilled about. The proof of this compensation was evident when I had a recent cold. Previously when catching a cold I would decompensate and be put back months with recovery , this happened many times over the last three years due to being I’ll constantly (I attribute this to fatigue and pushing myself). The last cold I had came and went and with minimal upset to me.
It would not surprise me that VN was misdiagnosed for some however if there is a scientific test that shows a huge deficit from the left and right vestibular nerve reaction then it’s a good indicator to this condition I think.
The problems came that after 2 years I had not compensated and no one could understand why? I had no headache so obviously not a migraine! It was only when I got to see a neurologist who listened to my story and symptoms who then pieced together the diagnosis of MAV and I began to educate myself on the complexities of migraine and some medicines began to help make me feel a bit better.

VN is a aged diagnosis. It should actually be called ‘acute peripheral vestibulopathy’. There is no proof its caused by a virus, hence the rename, and in any case you have a clear history of two traumas to the ear, both an accident and surgery! A virus was surely not the cause of your problem? Such a diagnosis is in any case a gross simplification of the anatomy of the ear and what can actually go wrong. I’m also not sure i’ve heard anyone say they’ve had ‘vertigo’ from ‘VN’. Dizziness for sure, but vertigo?

The deficit of your ‘nerve’ may actually be a fluctuating deficit of your balance senses on that side in its entirety (ie not just the neurons). It makes much more sense to me that this is because of fluctuating fluid volumes that are in any case delicately balanced and very much upset if you cause injury to the ear. Expansion of the endolymph region of the inner ear would change the characteristics of your motion response and presumably reduce the number of hairs that have the space to work properly. The fact that one can feel better some days suggests that often little or no permanent damage is done to the actual sense and the condition would be reversible if the body to get a grip on the fluctuations of the fluids.

Your history imho completely fits - initial trauma then vertigo attacks, worsening vertigo attacks after surgery and subsequently poor balance and a lack of compensation going forward.

Secondary Hydrops is very likely because its well documented to occur after both physical trauma and also after surgery.

The reason its hard to compensate for a physical injury to the ear (a physical injury that might have been extremely minor btw) is that it upsets the fluid balance which then fluctuates. Secondary Hydrops is a condition where the endolymph region grows and shrinks (but presumably not as much as in Menieres). These changes can be picked up in your tinnitus - if your tinnitus is changing character every day, during the day, then its likely this is due to the plumbing, not your nerves (hypothesis is the hairs touch the ceiling of their channel that is constricted and are allowed to move again when released).

You probably get worse problems with a cold, not because you have additional viruses ‘attacking’ your nerves but because the force of coughing and sneezing is physically upsetting your inner ear, probably due to pressure transferred to the inner ear windows that in any case may be injured due to the Hydrops and potentially an initial fistula injury.

And here’s where we get to the limitation of a MAV diagnosis. Sure there are neurological symptoms and migraines as part of the symptom spectrum, but do not assume migraine is the cause - it is simply the result of the fluctuations of your vestibular response in that ear that the brain is finding hard to compensate to and so irritated by at times it can lead into a migraine.

There is no proof MAV is caused by migraine, that’s purely a hypothesis by some scientists, mostly neurologists btw! And you don’t just end up with a chronic migraine problem from nowhere!

Here’s a good thread to read and check out the first paper:

http://www.mvertigo.org/t/the-migraine-controversy/14216

ENT medicine tends to give stuff ‘categories’ and names just to have something to write down on paper. In reality they do not have the appropriate tools in the clinic yet to accurate determine root cause.

It makes me angry though - by calling MAV a ‘migraine’ condition its kind of letting the doctors off the hook! “Oh its migraine, nothing we can do”. That is total BS and we need to hope that many people are working very hard to work out therapies that can solve the root cause, not just give us meds that put the brain to sleep so we feel slightly better but turn us into zombies.

There is a new MRI test that can diagnose Hydrops, but presumably that will give you a static, not dynamic view over a period of days (in which they level could change). There is a test being developed in Japan for fistula, but that’s probably pointless because once you have vertigo attacks that is likely to be fluid entering the middle ear in any case to release inner ear pressure (the windows are very thin and probably evolved to release pressure), so establishing CSF fluid in your middle ear is at this point not very illuminating, you knew this would be the case anyway …

I suspect MAV is simply secondary hydrops which is fluctuating in extent, thus causing the brain a very hard time in compensation.

Secondary Hydrops can settle down spontaneously over time, especially if its caused by an injury. Some say it takes 1 to 2 years, but I suspect it could settle down over a much longer period.

http://vestibular.org/secondary-endolymphatic-hydrops-seh

Not just my humble opinion - I’ve done a lot of reading and analysis - but do please realise ENT medicine is pretty under-developed and mainly due to the lack of technology, but also because the inner ear is so well hidden under thick bone - its extremely hard to monitor, especially over time. Clinical MRI cannot visualise Hydrops or BPPV and hi-res CT scans cannot visualise soft tissue.

On top of all that there is a political element - there are camps involved and neurologists versus ENT’s who all see things very differently. What emerges is often a ‘dogma’. Years ago our conditions would have been called ‘menieres’ or ‘perilymph fistula’ and I think that would have been closer to the mark. However, ‘MAV’ clearly is not classic ‘menieres’ (no low frequency loss and no profound loss of hearing during vertigo attacks) and not as simple as a discrete ‘fistula’. I am at a loss to explain why MAV diagnosis has got traction though - secondary hydrops makes much more sense. It’s probably taken from the relative success of the medication - they assume because the medication helps its a migraine condition. That’s a pretty shallow reason. Of course there are neurological symptoms, and of course the meds help with those, doesn’t prove the root cause though!

Also I don’t know whether you noticed, on the treatment flowchart of perilymph fistula on Dr. Hains website I shared - a very illuminating instruction in the ‘iterated’ process - “avoid triggers, exhaust MAV/Menieres medical management”. That tells you all you need to know imho!

https://www.dizziness-and-balance.com/disorders/unilat/fistula.html

So yeah, by all means use the treatment protocol of MAV as that can be very effective, but let’s not delude ourselves that this condition is caused by migraine …

(And then comes the debate on why people get migraines in general … who knows, they may all be suffering from a problem in one of their vestibular sense organs!)

Hi Robbie,

Did one ear have deficit over the other in VNG. Less than 20% is considered normal. You are right the side you feel less dizzy on the caloric test is your weak side. VNG helps VN diagnosis if you suddenly see a huge vestibular deficit ~50-70%. Did you do two different VNG test after a long break and did you see improvement ?

Also on the VEMP you have two kinds of responses. One kind of weakness indicated -Meniere’s or SEH and other indicated Fistula or SCDS. How did you use the VEMP result to conclude on the VM diagnosis ?

Migraine definitely slows down compensation. Restaurants were an uneasy place for me in the beginning but since my migraine is under control i spend more time in places i am uncomfortable and i am slowly seeing some progress.

Also do you have any tinnitus, whats happening on the tinnitus front ?

Hi,

Yes, during the caloric tests the left ear was 55% less than the right. Three years later while seeing the neurologist in London I had another series of tests however this was not using the fluid/ air in the ear but required me to wear some special glasses and focus on markers against a wall while someone moved/jerked my head. I suppose this is a better test to prove compensation but would leave me in the dark as to whether the nerve had some life back; I suspect not.

Before I was diagnosed with VN I had several very severe bouts of Vertigo (I was unable to stand or walk) and thought I was having a stroke. I would recover to perfect balance and have no issues (this went on for months) until I had a mild attack that made my imbalance worse and has stayed with me since, I have never had a severe bout of Vertigo since, just the awful imbalance, brain fog that has remained constant.

The VEMP tests I had showed no problems. This test was to purely to rule out other possible problems I think.
I was so fed up with feeling so rotten every day I was considering doing a Van Gogh and chopping my ear off when I got to the oto-neurologist!
I think it’s like what James is saying, VM diagnosis is given when all other known conditions are ruled out and they don’t really know what is wrong.
Tinnitus is a really odd one for me. I had never had tinnitus ever all the way through my initial diagnosis of VN, I went to a Birthday Party 5 months ago that had very loud music and I woke up with really bad tinnitus, it improved a little after couple of weeks and plateaued to a contestant high pitched beep ever since -it has never gone away. Weird.
I am making more effort with my diet now and have eliminated caffeine and red wine completely (I know these are problematic for me). I have now started amitriptyline medication over the last coupe of days and have been OK so I am hoping for some improvements over the next weeks.
Here’s to a happy healthy week!
:smile:

The tinnitus is probably due to the endolymph region growing sufficiently to start affecting the hearing hairs - the space in which they have to work decreases as the hydrops condition worsens until they are eventually trapped and no longer work properly. It clearly affects the basal end of the cochlear more (so its a high frequency hiss) and I suspect this is because its the site of the leak… I didn’t get tinnitus until 6 months after my initial trauma. So far, luckily, i’ve found that the progress of hydrops seems to have stopped and some days tinnitus can almost disappear. Hard to say if this is central compensation process learning to ignore the dysfunction. Who knows if it can be reversed, but I’ve seen a few articles suggesting that.

Good luck with the Ami, Robbie, and keep us posted.

Hi Robbie,

I do think you did have VN. 55% vestibular deficit does not happen due to migraine. I did my VNG 6 months later and i have only 20% deficit which is considered normal.( Either i compensated or did not have VN). Also with VN there is no hearing loss and hence no tinnitus for starters. You might be decompensating whenever you have the cold.

My tinnitus started 4 months after the initial attack suddenly at night and has stayed on and off ever since. Also what dose of Ami are you on ? Try to keep it minimal as you want the compensation to keep happening. Ami in high doses can be a vestibular supressant.

I had a migraine for 21 days with constant vision blurring, tingling, brain fog, light sensitivity and mild headache which lifted only on the 5th day of taking Nortriptyline. So the meds do help if your underlying condition causes migraine.

Yoga can be excellent as a VRT if you are able to do it. Some of the poses make you uncomfortable but then that is the point for your brain to learn. In normal life we walk, run, stand and bend and there is only so many combinations one can hit for compensation.

Good luck. Heal Fast.

A small update. I have weaned myself of the pregablin and the propranalol this week and have been clean for a couple of days now. So far so good. The amitriptyline is going well so far and is the only drug I am taking now. The side effects are not as bad as I remembered from last attempt maybe because I started by breaking a 10mg tablet in half for first two days so was taking 5 mg at night and now I am taking 10mg around 6pm.
First night on 10mg I was a bit groggy but I am fine now. I have had a couple of wobbles where I have had a migraine but this has passed relatively quickly, prior to medication I could have migraines for over a week before they would lift so the medication is definitely doing something already so I am touching some wood right now as off to a good start.
I think the problem originally is that I did not want to take medication, I got to 40 without needing anything and I hated the idea of being reliant on something. The reality is these medications can hugely improve quality of life and if they are relatively safe then I’m all for it now.
Going back to the original topic I am pleased to not be taking pregablin now. I had no migraines at all while I took this medicine but I felt very doped up and out of touch along with terrible short term memory that worried me.

That’s all for now. Hope everyone is staying positive. We have to!

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That’s great Robbie. It might well not be forever - its just to help your brain compensate and for you to heal as much as possible. I was on Ami for 1.5 years then it was no longer necessary.