Vertigo and Vestibular migraines. Exposure to PFAS and Diagnosis

Hi there, - Thank you so much for sharing some of your journey with us. If I can ask some clarifying questions- You mentioned being on Amitriptyline for three days- and then said you'd been on the drug for three years? Have you remained on Amitriptyline for three years? And at the end you mentioned Vestibular Migraine - but also said you'd received no diagnosis- and then you had a diagnosis on the last visit- were you been diagnosed with Vestibular Migraine?
First, I'm glad to hear you had a break from the troubling symptoms you were experiencing for the last three years. Are you being followed by a migraine specialist currently or a neurologist? Do you have any guesses as to what might've recently changed to cause an uptick in you migraine frequency?
We don't seem to have any information our site on PFAS. A quick check on Google doesn't seem to show a clear connection to migraine but there can be a connection between PFAS and neurological issues. You probably know that migraine is a neurological condition - so perhaps therein lies the tie. Vertigo can be a part of Vestibular migraine but can also show up as a symptom of regular migraine.
I'll be interested to hear your answers to the questions I posed above. We are here for you - to provide information and support anytime! Warmly - Holly (team member)

Hi, I will clarify. I started having vertigo about 20 years ago beginning quite mildly this and other symptom increased over the years with neck pain, headache and "a funny feeling behind and with my eyes' It started becoming unbearable about 2015 where i sought help it was horrible and was undiagnosed for about 3 to 4 years. Having 2 MRI's and one specialist Neurologist with no diagnosis from a scale of 1 to 10 is was never a zero during this period it was always there with no letup. I told my doctor if it was not fixed I was thinking suicide my be my only option and I meant it. Anyway I ended up in emergency about 5 times in 6 weeks, vomiting unable to open my eyes headache, bouncing off walls when I was able to walk at all. No diagnosis was forthcoming. But on my last visit I was told by a specialist I was having a classic "vertiginous" Migraine and he wondered why it was not diagnosed earlier. I have also had it called "vestibule migraine" or "Complex migraine" I understood that "vestibular" migraine by it's very nature has "vertigo" as its primary feature and would not be called vestibular without that feature.
On that last visit I was prescribed Amitriptyline. Within 3 days the symptoms totally diapered altogether. so after being on the drug for about 4 years or so the symptoms started coming back slowly I had my dose go from 25mg to 50 mg which is keeping it at a relatively low level but very slowly increasing. My doctors and my pharmacist suspect my body (Migraine) is becoming resistant to the drug thus less efficacious. My exposure to PFAS was heavy and it was Military spec AFFF 9 aquas film forming foam, being the source which is also a now known carcinogen especially to the renal system which both of my cancers are. I only mention that so you can gauge my level of exposure. Thanks for getting back on this.

Thanks so much Nancy, I am Australian and assume there will be specialists here. I will seek them out on your advice.

Steved,

This is totally unscientific, but I watched the movie Dark Waters. It really opened my eyes. I am allergic to formaldhyde, and propelene glycol, and many other chemicals. I grew up in the frypan, quick food, fast food, Tupperware, isn't this convenience wonderful era. I still remember using my first makeup at 15 and having my head seriously balloning so big that I looked like a martian, my eyes were swollen shut. My mom took me to doctor, and the poor woman tried...I seriously wanted a bag over my head I looked so awful, she said here, take my sunglasses...they were the tiny hornrimmed cat glasses of the time...comic relief if you will. Can you imagine? Did a patch test and found all the allergies.

Back to present day. This stuff manifests in your body. Even a cigarette smoke has formaldhyde in it. Just last night we were driving home and I could smell the pesticides sprayed on the fields and I'm like here we go. However, I am glad to see the PFOA free trend and no more formadehyde in alot of things. BUT...Amerian rules are alot more lax than European. So I really have to read labels and watch it.

Please take the advice of the moderators as I've only been on here a couple of days as you have alot more serious situation than I. I have found more help than months worth of searching on my own through this forum.
and have helped me in two short days more than some doctors. That said, it took me five years but I do have a good neurologist and GP, but it was worth it.

Will be thinking of you.

Lisa