New......All I can say is WOW!

Hello my name is Donna, I am 35 years old. I just want you to know about me. This whole NIGHTMARE first started with me 12 years ago and the end of my second pregnancy. Back then it was just feelings off being “off” every now and then, nothing major, then within the next years years, I was mostly having good and “normal” times with serve dizziness and vertigo (yes spinning) episode or days, they would be there and gone! I was telling my doctor about these things, had a CT scan with dye and everything was normal, he thought maybe allergies so I was using nose spray…nothing helped. Then as it became worse I started having more anxiety and Panic, did not wanna go places, etc…so my doc had me convinced I had Panic Disorder and GAD, so he wanted me to take xanax everyday…which I refused too! I knew I had anxiety and Panic when I got dizzy!!!

So every few years I would go in and complain about the dizziness, unsteadiness and he would do nothing, had a MRI with dye everything was again normal!!! time just went by

Then about 5 years after it all started I started having PVCS (like skippedbeats) and I noticed for like almost 2 whole years I would have either BAD PVCs OR Dizziness and unsteadiness, they would switch back and fourth, now of COURSE I went to the cardio and had test, everything was NORMAL! I was TIRED of hearing everything was normal!

Then in the fall of 02 I was having headaches and migranes almost everyday, the dizziness was not to bad during this time, and I freaked out and had yet ANOTHER MRI with dye and everything was NORMAL! shortly after they stopped and I was on and off dizzy and unsteady then in April 03 I became pregnant with our 4th child and the first half of the pregnancy I had PVCs like thousands a band, Heart doc said they were harmless, maybe due to hormones, who knew. The second half of the pregnancy I was a lil off , nothign too bad and no more PVCS

After I had my daughter in dec 04, I felt SO GOOD, I was nearly 100%, like I had not felt this good in MANY YEARS!!! i was breastfeeding, who knows if thats why, but when she became about 2 yrs old, the dizziness and unsteadiness came back on me and it is STILL here, getting worse than ever!

In 09 I read about a eye condition called VHS and it causes dizziness and so I traveled HOURS away to go see if I had this, and she said YES, but after 1 and a half eyes with the glasses on I am not better so this eye doctor is HELPING me in every and any way she can to get to the bottom of this!

All together had 3 MRIs and 2 CT scans all normal!!!
blood work, heart workup…thyroid, etc…

Here is what I feel or have felt over all these years
Light sensitivity, flourescent lighting in store or awful, the wind kills me
Noise bothers me (not all times)
I do have nauseous here and there for no reason or with the dizzys
Vertigo attacks, that HAVE been brought on by Visual stimli (had vertigo attack after watching waves hit the pier)
Vertigo attack from the heat
tingling on face, tongue, arm, odd things like that
migranes and mom has migranes with aurea and no pain…so a history
weak, tired, flu like, but no flu!
i rock 24/7, I really rock, people SEE me rocking and swaying
some days I cannot bend over or move my head to fast or look up, etc without getting dizzy…(have been treated for BPPV,nothing)
sometimes pulled to the right side, I dont know why!
I have so many other symptoms,
I am going to see Dr. Hain in Chicago in May and this eye doc who has been helping me is sending me the book “heal your headache” she wants me to start the diet NOW and give him the results…
If that dont work I will be off to John hopkins,
I DO believe I have MAV, I have NEVER in all my life read about something that sounds SO MUCH like me!
I have so many questions and want to go tosee Dr. Hain with as much information as I can so I am hoping that I will get some information here from all you guys!!!

Another ODD thing is for the ast few years I have noticed a patteren, I feel better (still there a lil) duing srping and summer and by August through winter its worst and more consistent and I HATE looking forward to that time of year!!!

Thinking it COULD be cause of the different foods we eat on the grill almost everynight when its warm out verses what I eat in the winter, a LOT more prepackages foods and fat!!!

ANyhow nice to met you and what do you think,

Welcome, Donna.

First and foremost, don’t worry. What you have described are textbook symptoms of MAV, so welcome to the club! :smiley: Seriously though, it sounds like you do have issues in this area. The very good news is you are going to see one of the best doctors in field who I am sure will help you understand this condition more and start a treatment plan for you should he indeed agree that you do have MAV or its equavalent. Understand that symptoms can ebb and flow, based on a number of things, so that’s why you may feel good one day, bad on another. The book you are reading is recommended, as is reading the posts on this site when you feel up to it, to educate yourself. Keeping a journal and notes about your condition (your story as it were, condensed as you did here) to take with you when you see Dr. Hain is also a good idea.

Know that this is a great forum for support and information. Just knowing you are not alone and have made a contact with a doctor who can help must be reassuring. Hang in there.

Best, Bonnie

PS. Prepackaged foods, with all the nitrates, additives, etc, etc are KILLER to MAV folk, so you hit the nail on the head so to speak with that guess!

You sound just like me! I’ve had this since I was 11 years old but never really knew what it was. I would get dizzy here and there but it would go away- no big deal. Then, it hit big time after my 2nd child and 5 months later I am majorly rocking and roliing! I never had headaches but migraines with pain do run in my family as well. I got a quick diagnosis but I also think I had an inner ear virus when the big ban hit so I think my inner ear may be trying to heal as well. Thankfully, there are a lot of medications to try for MAV, it will just be a long road ahead to try them and give them each a fair shot. You are so lucky to be seeing one of the top Doctors so great for you! Yes, seasons are a huge factor! I feel best in the summer and feel that October and February are my worst months. I think we all need to move to the hot desert!

You will find so much help here and most of you questions answered! I have found so much strength here. Welcome and do keep us posted with your visit!


Sorry you are dealing with this awful illness too. Welcome to the forum. Lots of good information and people here. I hope you get answers and help soon.


PS i’m the opposite of you i feel best in the cold cold weather.

Welcome Donna,

What you have described is very familiar, sounds exactly like MAV. Good to know you are seeing Dr Hain - he’s one of the migraine and vertigo gurus. If you have a look at the MAV survival guide here you will get a good idea of what you are dealing with and how to manage it.