Help me please. MAV or not ?

New here, let me introduce myself šŸ¤
1

Hello, everybody. Excuse me in advance if there are mistakes in the text because I am French and I use a translator.

Iā€™ve been reading you for a long time but Iā€™m only crossing the line today.

My background, like many of you, is complicated. There are many factors that come into play and as a result I am totally lost.

Long story short, youthful error at the age of 16 I take ecstasy, since that day (I am 33 years old) I live with a chronic drunkenness, as if I had drunk alcohol. I also went through a feeling of derealization but I learned to live with it. Of course I have seen many doctors, passed many exams but never anything was found.

Three years ago I was really bad and I was diagnosed with lyme disease, I had a lot of heart and respiratory problems, it was impossible for me to stand up for more than 10 minutes, I stayed in bed for two years and I had to travel to the specialists in a wheelchair. Luckily, long courses of antibiotics relieved my symptoms and today I can stand upright.

But letā€™s just say that all this is not my biggest problem. Two years ago I decided to lie on my couch supporting my head with my left arm and suddenly I feel very bad, as if I was going to pass out. Since then my life has been a living hell. I have the feeling that I am spinning very slightly to the left and I canā€™t stare any more. My gaze constantly jumps to the left and then comes back to the centre, it makes me think of a nystagmus, but yet it is not visible. In fact itā€™s simple, imagine that you are on a turnstile and that you come down, you turn and you canā€™t fix your gaze, this is what i live. The advantage of the turnstile is that the sensation lasts a few seconds. For me itā€™s been 2 years non-stop.

The months go by and the doctors find nothing (scanner, MRI ā€¦) I try to live with it ā€¦ One evening when I canā€™t stand this feeling anymore and in desperation I start shaking my head very quickly from right to left on its horizontal axis (I know itā€™s completely stupid) as if to try to put things back in place inside my head. This manipulation instantly increased my symptoms by 30% and it took me about 3 months to get back to the previous state.

Later, while doing research I found a video of a doctor who specializes in ears (I donā€™t know what they call them in your country) which shows a simple exercise to do to re-educate the ear and make the dizziness sometimes disappear. I will give you the link of the video ( manoeuvres dynamiques actives dans le plan des 6 canaux semi-circulaires. - YouTube ). I have done this exercise only once and once again, go to hell, all my symptoms, feeling of being attracted to the left, left rotation is difficulty to fix my eyes and increase, it was 1 year ago and this time things are not improving behind.

I am currently being followed by a specialist who thinks it is a perilymphatic fistula but nothing sure. I told her about a vestibular migraine but she tells me that it is not possible because I donā€™t have migraines whereas we know that one can suffer from vestibular migraines without headaches.

As I told you before I am completely lost about the diagnosis.

The problem is that I do not meet all the criteria for perilymphatic fistula.

I recognize myself in many symptoms of vestibular migraine, visual instability, sensation of rotation, of leaning to one side, the sight that sometimes shakes, the carpets or tapestries with patterns sometimes flashes, sensation of lightheadedness, sensation of pressure in the sinuses, the whole left side of my head seems to be asleep sometimesā€¦

The only thing that relieves me a bit is to swing from right to left slowly, Iā€™ll say Iā€™m 40% better doing that, or to look at something ready, like my phone for example.

Iā€™ve been trying amitriptyline for 2 months but Iā€™m not regular in my doses, Iā€™ve been increasing my dosage by 1 drop a day and then I got to 30 drops the next day and I couldnā€™t walk, so I stopped everything (a mistake probably because I should have decreased). Today I am at 15 drops a day. I havenā€™t noticed any improvement in my symptoms, I just had the impression the first week that it helped me a little but thatā€™s all.

The diagnosis of vestibular migraine pleases me because I recognize myself in the symptoms and on the other hand I donā€™t understand why my vestibular migraine would increase after shaking my head or doing the doctorā€™s exercises on video.

All these symptoms are so hard to live with, I have no rest, even watching television is very complicated, even at night to fall asleep with my eyes closed I feel drawn to the left ā€¦

I thank you very much for reading me and wish you all the best.

2 Likes
2

bienvenu Alex!

We canā€™t diagnose here, but it would appear you have an obvious vestibular problem.

This can take years to resolve.

Something has happened to you, and you may never find out what, but these things definitely have a cause.

Yes, this is possible

image

https://books.google.co.uk/books/about/Otologic_Surgery.html?id=PQ3hCgAAQBAJ&printsec=frontcover&source=kp_read_button&redir_esc=y#v=onepage&q=derealization&f=false

I also had this diagnosis (one of a few). What you can get after PLF is inner ear hydrops when it starts to properly heal. Itā€™s a build up of pressure in the inner ear that is caused by the fluid imbalance that has built up during the leak and once the leak starts to stop. Even patients who have had PLF surgery can get this because the surgery canā€™t fix the residual fluid imbalances. This has identical symptoms to MAV. From your description Iā€™d say this is possible

For your reference, here is someone who also suffered from this: Secondary Hydrops, PLF and my 3rd PLF Repair

But how did you get that? Did you listen to a lot of loud music for a long time? Did you use inner ear headphones and pulled them out one day very abruptly? Have you had a head injury or car crash? Problems with your ears when landing in a plane? Do you remember any moment when an ear was particularly uncomfortable? There are few pain receptors in there, so it may be hard to tell. I did not feel any pain when I believe I got mine.

Mine was dismissed as migraine many times, but I knew Iā€™d brought my situation on with trauma. Remember that it may no longer be PLF but the Secondary Hydrops you get during healing. Itā€™s very hard to be sure of anything with these symptoms, but for it to be PLF you would have had to have had some trauma of some kind at some point. It might have been a long time before you got the worst symptoms of Secondary Hydrops (which for me has lasted years, not the weeks I had of imbalance almost immediately after the trauma).

I had a similar experience - I jumped up and down on a friends indoor trampoline during my illness and
it set me back weeks! I would not perform any extreme movements if I were you and let your system reset itself.

I was desperately ill for years but finally got (mostly) better. It can be done! Please note I never had surgery, I didnā€™t need it. My bad ear is still not fully right, but itā€™s soooo much better!

Keep calm, stay strong, keep soldiering on and if you can please do not lie around, but try to walk somewhere nice everyday for as long as possible. Do not use walking aids unless itā€™s dangerous.

NB The treatment for PLF is usually identical to MAV, because 90% of cases of PLF heal spontaneously (according to Hain). So whatever you have, the treatment is often the same:

image

from: Perilymph Fistula

Follow the diet guidance (the 6 Cā€™s) and avoid recreational drugs and alcohol.

I took 20mg of Amitriptyline. This is a great drug for this problem.

You also need to expose your brain and retrain it as much as possible which will help reduce your symptoms.

Keep us updated.

Bon chance mon ami!

1 Like
3

That sounds very unpleasant!

You mention your ā€œyouthful error,ā€ with ecstasy. My problem (Iā€™ve posted about it in my introduction, which Iā€™m sure you can find) started when I was 20, at about 2AM, when I was high on drugs. Iā€™ve always instinctively assumed the vestibular condition was a consequence of the drugs, though recently Iā€™ve been questioning this. I remember my flatmate had weird dizziness a few days before I did, but it just went away. I wonder whether there was some sort of virus going aroundā€¦ so I guess I picked it up, and it just did more damage to me than to anyone else (perhaps because of the drugs?!).

I tried searching for information about drug-taking and vestibular disorders, but I couldnā€™t find any. Probably because itā€™s not a politically correct subject-matter.

Anyway, I agree with what was posted above: keep walking, every day if possible.

Good luck!

2 Likes
4

Very interesting. PLF causes a Secondary Hydrops, which is what Iā€™m sure (and my latest doctor is sure) I suffer from. This is what causes the ā€˜MAVā€™ symptoms at least in my case. I wonder if recreational drugs can also cause onset of inner ear fluid imbalance?

Oh oh !!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3748725/

ā€œAn added concern is that MDMA consumption may enhance the NIHL among clubbers, rave-goers, and psychiatric patients. For example, MDMA can deplete the brain neurotransmitters serotonin and dopamine ([Perrine et al., 2010] Both of these neurotransmitters are believed to play a protective role against acoustic trauma ([Lendvai et al., 2011]ā€

https://www.cambridge.org/core/journals/journal-of-laryngology-and-otology/article/case-of-sensorineural-deafness-following-ingestion-of-ecstasy/EC0CE7A49A97B6A83F5841DBD2BA5379

So it seems MDMA may have an unhelpful influence on the inner ear.

The thing is this could manifest as a vestibular problem as well as a hearing problem I suspect, because the anatomy is so intimately linked.

Itā€™s also very interesting Ecstasy users and MAVers both complain of ā€˜Brain Zapsā€™. Perhaps thereā€™s a etiological link and common cause at some level.

https://www.vice.com/en_uk/article/bnkv45/brain-zaps-sleep-paralysis-mdma-ecstasy

Going even further:

https://myhearingcenters.com/blog/stress-could-lead-to-hearing-loss/

See:

This is a very interesting line of inquiry ā€¦

Perhaps unhealthy levels of neurotransmitters can affect inner ear fluid balance? This might account for relief of symptoms in users taking antidepressants ā€¦

Further if you add potential impact to neurotransmitters from migraine you can see this whole thing is potentially circular.

5

Hi, Alex

Iā€™ve never taken recreational drugs and never would butā€¦ Iā€™m still here. However, ecstasy acutely induces anxiety and has excitatory effects that destabilise brain chemistry which can last for years.

SSRIā€™s may help youā€¦

1 Like
6

I can personally attest to inner ear disturbance causing anxiety, so that might be the ultimate reason wrt to MDMA, but who knows ā€¦

In any case, agree, SSRIā€™s might be one excellent therapy (Tricyclics like Amitriptyline though are excellent too and better tolerated.)

7

Turnitaround, thank you very much for your answers and your research work. I have read your story and you are a very brave person. I donā€™t know where you live, but I swear to you that the day my life gets back to normal, I will come over and buy you a drink :blush:.

Itā€™s very interesting that PLF can create a sense of derealization, but Iā€™m not sure that ecstasy creates PLF. At the time, I was at a forum that only dealt with derealization/depersonalization, the common thread for almost everyone was that the trigger was drug or alcohol, it could be cannabis or mdma. I always thought that it had deregulated my brain chemistry but I never found a neurologist competent to understand it.

Sixteen years of drunkenness is a long time, and as you can imagine, I tried a lot of treatment at the time. Benzodiazepines relieved my anxiety but never my instability, the doctor prescribed it for 5 years, a horror, I took 2 tablets a day, in the end it did me more harm than good, I then started a withdrawal of my own free will and it was a long and difficult journey but I ended up getting better once I was out of it.
My feelings of instability were also 50% worse after a visit to an osteopath, who did some manipulations on my cervical vertebrae, it took me about 3 years before I met a chiropractor specialized in upper cervicals (atlas) who was able to give me some relief. I had an MRI and a CT scan of my cervical vertebrae, but nothing was found. However, a month ago, a physiotherapist gently turned my head from right to left and I went through hell for a week, I felt like I was walking with my body tilted to the side. Again, I donā€™t understand the link that there could be between MV and my neck! Sometimes I think that all my problems come from my cervical vertebrae but I donā€™t know where to turn.

5 years ago, before my big vertigo problems started on my couch, a doctor prescribed me paroxetine, I went from 60 kg to 80 kg in only 3 months, I stopped everything because I didnā€™t feel any improvement.
Today I managed to get my doctor to prescribe me Venlafaxine (effexor) because I see that this is one of the drugs that Dr. Hain gives as first line and some of you seem to have success with this drug. The doctor tells me to start at 37.5 and that if I tolerate it well I could double the dose after 5 days, but I think thatā€™s a bit too fast?

To answer your question, yes I had a head trauma without loss of consciousness at the age of 8 years old then 1 year before the episode of the couch I had an accident on a quad, it fell on my head, fortunately I had a helmet. But what is delicate for the diagnosis of PLF is that at the time of the onset of the symptoms I was on my couch watching TV.

What youā€™re telling me reassures me a little, because I still canā€™t make the connection between vestibular migraine and moving my head quickly. But trampolining and swinging your head quickly and in a similar way, you create acceleration is therefore a pressure. My theory so far is that the movements Iā€™ve made with my head have created internal pressure which may have opened up the PLF a little more or a little more fluid has passed through the middle ear.

There is also something EXTREMELY important that I forgot to mention: 1 month before the couch episode started, my doctor prescribed me haloperidol, he was convinced that this would solve all my instability/drunkenness problems. I refused to take it, then I was so bad that I gave in.
I started with 1 drop and increased by 1 drop a day for 20 days,
From the beginning of the treatment I started to feel more dizzy and especially for the first time in my life I experienced episodes where I was attracted / turned left while walking (which is one of my major problems at the moment).
So I stopped after 20 days of brutally taking it. 5 days after stopping, the day came that changed my life (the episode of the couch, therefore attracting to the left, inability to fix my gaze) the days that followed I think I suffered from a serotonin syndrome, I explain myself: during the sleep phase, you know the moment when you enter the second phase of sleep, when you go from conscious to unconscious, at that exact moment I was struck by an enormous vertigo that made my head spin at full speed, the fact of waking up instantly stopped the sensation, it lasted about 3 days. For a long time I thought that haloperidol was responsible for my condition but after a lot of research I didnā€™t find a case similar to mine.

Oh, yes, one more thing. When I touch one of my ears, or when I scratch my cheek for example, instantly afterwards I have a noise in my ear, I have the impression that it comes from the eardrum, it seems to jump, or you know like when you have water in your ears, exactly the same noise. You ever had anything like that ?

Andy & Dave1 thank you very much for your intervention, this is very interesting.
Concretely at the moment I am thinking of stopping the amitriptyline and trying to take Effexor. Do you think I need to go through a withdrawal from amitriptyline before or can I start Effexor immediately?
I sincerely apologize for the huge pad I just wrote but there is time to say something. Iā€™m 33 years old and Iā€™ve spent half my life fighting to hold on my 2 legs.

8

My trauma happened 6 months before my MAV turned up, seemingly completely out of the blue. This to me looks like a possibility. But of course, very hard to know for sure. I had had 5 weeks of imbalance after the incident which then suddenly cleared up, then about 5 months of being completely normal (going on holiday, swimming etc) until the derealisation episode struck. It struck sitting on a chair at work in a meeting. I had a couple of tell-tale warning episodes of dizziness when stressed in the time between, but no major clues, apart from in my case a feeling of fluid in my ear most mornings.

I can imagine this timeline being really variable for trauma sufferers because it all depends on amount of injury, how long the leak occurred etc.

This could just be coincidence. Again hard to know for sure, but I donā€™t think haloperidol is ototoxic? It could simply have coincided with a build up of your symptoms so you blame the drug?

Depends how much you are taking. You can go down by 10mg a month, no problem (probably more).

Be careful of switching too much. Amitriptyline is a fantastic choice for vestibular problems because it is a vestibular suppressant. Do not expect any drug to be a silver bullet because they simply donā€™t exist.

You have to wait for your body to recover homeostasis, and btw, the more drugs you take, the longer that process may take, because you need to expose your body to normality eventually as much as possible.

However, there is a need to control symptoms, especially migraines, so itā€™s a careful balance.

Keep us updated man and good luck with Effexor!

Absolutely! Currently in London, so if you ever find yourself here, drop me a note. The beer is not so bad here haha. :beers:

9

Thanks again Turnitaround for all this precious information.

I was wondering if I would give the amitriptyline a chance to work again. As I explained above I have been taking amitriptyline for 2 months but not in regular doses. I increase by 1 drop a day and reach 30 drops the next day and I was very dizzy the next day.

What I know is that I have never had any improvement so far with amitriptyline. Is it possible that it will start working later suddenly or are you advising me to switch to Effexor now ?

itā€™s a real dilemma

10

The vestibular system needs stability. You must stick to a daily dose and only vary it very very slowly. I was on 20mg for over 1.5 years. Itā€™s no silver bullet but it helped get rid of the dizziness, allowed me to look at screens all day and virtually stopped the migraines if not the vestibular attacks.

I donā€™t know what a drop is, 1mg? I would stick to tablets and take them late evening. Do not vary the dose on a daily basis.

11

Hi Alex

James (@turnitaround) literally kept me alive when I was at my lowest ebb with my PLF. He is a godsend. I was (eventually) diagnosed with 2 PLFs in my right ear and a further tear in that ear. I, like you, had debillitating vertigo (mine following a car accident) for almost 4 years. I was given all the drug therapies, none helped, indeed like you, some harmed my body more.

I was very lucky though, I was sent to see the top doctor in the UK for PLFs (James has seen him too) and I underwent 3 operations to fix it. I am now vertigo free. The operations are arduous, and I also had reiki and took a specific regime of vitamins that help the inner ear heal post surgery, but I have a life back.

I will be forever grateful to the amazing Professor Saeed and his team. Please do not lose hope, it is incredible what can be achieved when you find the right speciliast doctor.
Take care
Tina

2 Likes