HELLO!!! Reading all of your posts have been amazing. I’ve been having symptoms for about 5 years that have been progressive. My very first symptom was a “wave-like” feeling of dizziness for about 2 seconds. I though nothing of it. These “wave-like” feelings then would come more often and last for longer and longer periods of time. Then came the “derealization” and floaty feeling. Next was word finding, memory, clumsiness, word slurring. My vision started to go out of focus. Especially when driving. My periods of “normalcy” became shorter and shorter as the years went on. In December I started to have internal vibrations. At first I thought that we were having earthquakes (live in Alaska). Then the internal tremors manifested into an actual visible head tremor. I have these horrible waves that come and go where I feel so awful, like I’m on a boat and rocking, nausea. Honestly, the worst part for me is the cognitive decline. I’m not as smart as I was. I’m an ICU RN and am currently unable to take care of patients safely. The word finding is sooooooo frustrating. My current neurologist (I’ve seen 3) said that this is most likely vestibular migraine which is hard for me to believe, especially since my symptoms are 24/7. I mean who migraines ALL the time??? MRI and neuro exam are all normal. PET scan saw some decreased uptake in the cerebellum/brainstem but the neurologist said that this could “just be me”. I’m currently on verapamil 120mg and have tried metoprolol with little relief. I’ve also had botox twice. I still headache on the regular. Has anyone else had similar symptoms???
Hi, and welcome to our (seemingly) Crazy World. Personally I can relate to virtually everything you say except the word finding isn’t really my regular thing except perhaps at the top end of a really bad vestibular attack. That said huge variance exists and others on here suffer it regularly.
Made me smile your wording there. Actually if you read widely on here it shouldn’t be long before you believe the answer to your question to be ‘You, Me and about half of the rest of the world’s population’! The long answer is long, complex and like most else about the condition unresearched and unproven. There are lots of threads on here under Research if you are interested in following up. In short might be good idea initially to think about ‘Central Sensitisation’, and check out threads on here relating. Theory briefly is one is stuck in a loop of increased sensitivity that constantly fuels itself in a cycle. It’s very unusual to trace the original root cause (doctors generally don’t even look just treat symptoms) but the treatments aim to break the vicious cycle. I think that makes far more sense than having a permanent migraine but that’s just one opinion.
Do explore the site. Search facility is excellent. You will find plenty of info on pretty much any MAV associated key word. I see you mention derealization. You’ll find plenty on that. All the best with finding your own personal solution. Helen
Absolutely agree with Helen @Onandon03!
I think most of us here have or have had constant symptoms and all of those you mention.
I also think most of us questioned our diagnosis’s since we had a previous perception of what “migraine” was.
It’s interesting as we learn all the different types of migraines and how each symptom varies. Over time and research you’ll be doing, you’ll find that it begins to make more sense.
My partner is an ICU RN too. He’s young and healthy, and it’s still such a tiring, stressful, demanding job. It must be so difficult with your 24/7 symptoms. You must be exhausted!!
But it sounds like you’re on the right path - looking for answers, seeing doctors etc. Have you tried altering your diet, e.g. coming off caffeine, limiting dairy etc.?
Even my doctor doesn’t quite believe my symptoms are migraine, but literally listening to this NOW on YouTube and the MD (who is a leading expert on vestibular migraine) could be describing my headache life, with the sole complication mine is all driven or aggravated by an overactive thyroid.
I’ve only ever met one (locum) GP who did. My own GP never has. She has this irritating habit of always prefacing any reference with the words ‘They (meaning the various consultants I’ve seen) say it’s migraine’.
I was very surprised when originally diagnosed but, after some thought and a bit more reading, it made sense to me and that’s what matters. Everyone needs a meaningful diagnosis with which to work.
Thank you so much! I will definitely be looking into “central sensitization”. When you say treatments do you primarily mean medications?
Just pick up the threads on this site. I posted a medical paper I read years ago long before I ever heard of MAV which certainly made my sensory symptoms make sense to me.
Treatments, um. The complete package includes medications, preventatives as they are called, a migraine e!imitation diet, lifestyle changes (regular routine, sleep patterns etc), some abortives (painkillers for acute attacks), and, one often overlooked most probably because it’s damnably inconvenient, elimination (ideal but totally impractical) or extreme reduction of triggers. That’s of course after you have identified them.
You will find a good Migraine Guide and much further detailed info in the on site Wikis.
Welcome to the forum. I’ve also had vibrations, woken up thought I was in an earthquake.
I am an engineer, so I really sympathize with that feeling. Was very hard to accept that I couldn’t think as well as before and I ended up changing jobs because of it. I am happy to say now (almost 4 years with MAV) that I’m near 100% and my brain is back and feels better than it ever has (probably because I’m taking better care of myself).
So, keep working on treatment options and be patient, you will get back to normal or even better than normal!
Almost 100%?! Amazing. What meds did you take??
Gone off topic here. Don’t think Erik has a PD as such but he did a full write up of his meds very recently somewhere if you check back through his posts. Helen
Fantastic. Consider writing a reply if anything in a #success-stories-positivity summary, Erik!
We are way off Topic.