Firstly, apologies if my English isn’t perfect at times, it’s my second language
My name is Jonathan, I’m 29 years old.
I’ve been reading here for the past few months and it has helped me a lot in my journey to understand what I’ve been going through in the last two years, since here in Israel VM is highly undiagnosed and un-accepted by many neurologists. So much so that when googling “vestibular migraine” in Hebrew, you barely get results
So basically it all started exactly two years ago, in the middle of an incredibly normal day at work, didn’t do anything out of the ordinary, no sudden movement or anything like that - I suddenly started feeling dizzy, light-headed and sort of a floating sensation. This stuck with me for about 10 days which got worse at times with extreme dizziness (almost like a full-blown vertigo attack but not quite intense), in these 10 days I went through some medical checkups (general physician, ENT, neurologist, brain CT, blood tests, etc.) and everything was perfectly normal. Any middle-ear issues were ruled out and I basically had no answers.
As I said, after about 10 days the feelings dialed down a bit and I was able to go back to work, with only slight symptoms, but then I realized the back of my head and neck was extremely stiff and slightly painful, almost like a strained-muscle kinda feeling.
My general physician at the time thought my constant floating sensation and dizziness was caused by the neck pain so I had some tests done for that as well and everything was fine. He decided to prescribe 10mg of Amitriptyline for the chronic pain and recommended acupuncture.
The acupuncture seemed to help at times, and since then I’ve been able to identify that on days where the neck hurts more, the dizziness and floating sensation was stronger, so these things came together. So I was sure the acupuncture was the answer to my problems, since the Ami didn’t help at all (I was sure it was actually making things worse!).
I stopped with the Ami after about 7-8 months I think, which was when I realized the Ami didn’t actually make things worse, it just didn’t do anything at all really.
Since then I’ve had monthly vertigo attacks, in which I must lie down and can’t move and the whole room was spinning for like 20-25 minutes until calming down, which usually led to about 3-4 days of feeling extremely bad and sensitive. In between these attacks, still feeling unbalanced, dizzy, floating, light-headed and had difficulty focusing my eyes. Also light sensitivity of course and stiff neck (left side mostly). These symptoms sometimes come with headaches and sometimes not. For the first few times I actually went to the emergency room and was sent off with “you have BPPV, take some Betahistine/Stunarone and go home”. Obviously, both didn’t work (well, maybe the Betahistine helped a little bit with the dizziness but nothing significant). In the morning right after one of the attacks I went to an ENT, he did every test in the book and concluded that it definitely is not BPPV, of course.
About two months ago I had one of the hardest vertigo attacks I’ve ever had, in the middle of a workout at home - it lasted about 45 minutes and left me feeling horrible for about a week afterwards. A quick reminder - at that time it was still unclear what’s wrong with me.
After that attack I decided to go through all the checkups again as I am expecting my first-born son (in about 6 weeks!) and decided I’ve had enough.
So, I went to a different general physician and got everything checked out again - CT, blood tests, the works. Everything was fine. The doc suggested vestibular physiotherapy (I think it’s called VRT?).
So I reached out to one therapist, talked on the phone for about 15 minutes, and that was the first time I heard about VM. I went to see him and after about 2 hours of testing and talking he said it sounded like VM and I should see a neurologist again. The first one I went to said that it is possible but that there are no meds for that. By that time I had already found this forum and I knew there was
So finally, last week I went to a different neurologist, head of department in a big hospital here, which was a very expensive appointment, and he also said that this was a possible diagnosis and he finally prescribed Ami again, this time start with 10 mg for a week and then go up to 25mg for a couple of months. After that I should update him on how I’m feeling, and if I feel significant improvement in the day-to-day, we can officially say that it is indeed VM and we’ll see how we proceed medication-wise.
I’m currently in the 10mg phase and in 3 days I’ll be going up to 25, really hoping it’ll help!
These past few days it feels as though the Ami is actually making the symptoms a bit worse but reading through the forums here I’m somewhat optimistic that it’ll pass and hoping to get better soon.
I’m also doing some VRT exercises + TENS machine in the back of my neck 3 times a day as suggested by the physiotherapist, so the neck stiffness is getting slightly better but everything else feels quite the same still.
Anyway, I’m looking forward to learning more from you guys and these forums and hope we all feel better! Hopefully this post isn’t too long and hard to read
Are there any more Israelis here, by the way?