Hello, everybody. Excuse me in advance if there are mistakes in the text because I am French and I use a translator.
I’ve been reading you for a long time but I’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 let’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 can’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 it’s simple, imagine that you are on a turnstile and that you come down, you turn and you can’t fix your gaze, this is what i live. The advantage of the turnstile is that the sensation lasts a few seconds. For me it’s been 2 years non-stop.
The months go by and the doctors find nothing (scanner, MRI …) I try to live with it … One evening when I can’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 it’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 don’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 don’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 sometimes…
The only thing that relieves me a bit is to swing from right to left slowly, I’ll say I’m 40% better doing that, or to look at something ready, like my phone for example.
I’ve been trying amitriptyline for 2 months but I’m not regular in my doses, I’ve been increasing my dosage by 1 drop a day and then I got to 30 drops the next day and I couldn’t walk, so I stopped everything (a mistake probably because I should have decreased). Today I am at 15 drops a day. I haven’t noticed any improvement in my symptoms, I just had the impression the first week that it helped me a little but that’s all.
The diagnosis of vestibular migraine pleases me because I recognize myself in the symptoms and on the other hand I don’t understand why my vestibular migraine would increase after shaking my head or doing the doctor’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 …
I thank you very much for reading me and wish you all the best.