Hi my life has been completely put on pause since May 2019. I was taken by ambulance to the ER for a severe vertigo attack and extreme HB pressure 230/100. I was at work at the time and my symptoms consisted of whirling, spinning, blurry vision, fluctuating hearing, foggy, off balance and extreme dizziness. I was unable to turn my head to the left. It felt as if I was unable to move and if I did I would pass out. Cardiac results showed no evidence of heart issues. I left the ER with a diagnosis of Vertigo due to a possible virus. Since this day I have experienced alot of highs and lows. I was down for 2 wks with nausea and vertigo episodes. Then the left ear fullness and discomfort happened with tinnitus. Went to my PC that recommended physical therapy for the Vertigo. My PT did the eply maneuver and some head and neck exercises to help improve the dizziness and stiffness in my neck. Nothing seemed to stop the chronic dizziness. In June I saw an ENT that recommended I do vestibular testing. I did the testing and the results came back for bilateral meniere’s disease. As you may know I was scared and confused. During all of this I came down with diviticulitis. This was a miserable time. Feeling dizzy and extreme pain in my abdomen. So on antibiotics for ten days and more rest. I have been experiencing migraine headaches for sometime but the headaches I started to get through all of this were different. Being tired all the time and experiencing multiple symptoms was really weighing on me. The headaches would stem from the base of my skull at the back of my neck and it felt like sharp electrical shocks that would shoot up to the top of my head. During this time I would get extremely dizzy, nauseous and tired. The next day would feel like I was hit in the back of the head. It would take me days to recover but the chronic dizziness was always there. So off to a neurologist who said he was not sure if it was a migraine. The brain MRI was good and my inner ear seemed to look healthy. So he ordered a cervical spine MRI and some bloodwork for autoimmune diseases. I am still waiting for those results. In the meantime I have seen two specialist for Meninere’s. Guess what…both think I either have vestibular migraine…PPPD…or the early stages of meniere’s syndrome. The symptoms are very similar so the last doctor wants me to work on rehabilitating at home. He said to get the book “Heal my headache” and do the three step program. I go back in two months. Fingers crossed in hope this will relieve my symptoms. I have a list a mile long of symptoms and triggers. Hopefully I can narrow it down. I look forward to reading all your helpful supportive advice…Take care❤
Welcome, I understand clearly your pain on your head I have the same thing like an electric wave passes through. Dizziness is very common for VM which is my main symptom plus my vision is like I am drunk. I feel like you have VM, its very difficult to have bilateral menieres as I have read, now for the PPPD diagnosis I want to tell that seems a bit a joke (no offence), may I ask if you lie down do you feel better? For VM they probably put you on anti migraine drugs and see how it goes, you are the one of the “lucky” that found an early diagnosis which gonna help a lot.
Hi I often wake up 2 or 3 times a night suddenly feeling my heart racing and very foggy. The dizziness does not stop. It may get less intensive and I eventually fall asleep but wake up feeling more tired then I did before bed. It is a vicious cycle. I am only looking to get through the day feeling somewhat normal. I am gonna try to do this without meds but if I have to I will. I just saw a great doctor and hopefully in his care I can get to the bottom of this. After several visits to many doctors and lots of tests I am lucky to have the input and knowledge of others going through VM…thanks
Its good that you have a good doctor who knows and cares. Many of them they dont try to help or even try to understand what is your condition. I had the same thing with the heart, meds helped a lot. If you manage to minimize the dizziness with only life chamges you are on a good way. Take care.
This is almost EXACTLY what happened to my mom last year to the tee ( except they said she had BPPV). Some symptoms are different but the overall story seems very similar.
This too happened in the beginning!
You are lucky to have gotten a diagnosis so soon and have found a doctor who cares. I hope you well.
How is your mom feeling now? I am so afraid to have to live with this forever. I wish her well and family support is so important.
Hi Laurie, welcome… you have found a group of people here who can commiserate and provide good advice for this dreaded disorder. All of the things you’ve gone through are so familiar to all of us, physical symptoms and the weight of the mental stress they bring. It’s incredible that you’ve found such good care in a relative short amount of time! Two Drs who even know what Vestibular migraine is… that’s amazing! The heal your headache book has been recommended here countless times, I hope and pray it’s enough for you to recover! I think there’s a greater possibility of that since by most VM diagnosis standards, your catching this pretty early! Best wishes to you and know we are all here to offer support any time you need it
You might find the Angela Stanton Protocol helpful. This is her group Facebook site: Groupe public Migraine Sufferers who Want to be Cured by the Stanton Migraine Protocol | Facebook .
This was a fairly regular symptom for me too. I still get it occasionally, I think @Onandon03 described it as “body anxiety”, where the mind is not necessarily anxious during sleep but the body is on high alert due to all the sensory problems that come with MAV.
You are in good company here, I also went to the ER thinking I was going to pass out or die. Although anxiety is part of the problem, its mostly a sensory problem associated with either vestibular dysfunction, migraine, or a combo of both. The amount of “strange” things you can experience makes you wonder if you are actually on a psychoactive drug, losing your mind, or have some exotic medical condition, but no, it’s probably just MAV. But still, it is good to get all those tests done to rule out possibilities.
You will get better, but it will take some time. I am almost 3 years in and feel very close to fully recovered. You are very lucky to be talking to healthcare professionals about treatments for MAV so soon after your initial attack. I didn’t hear of MAV until about 1 year into it, which I believe is why its taken so long to get out of it.
I was correctly diagnosed many, many years ago with Meniere’s disease. About 10 years ago I was ALSO correctly diagnosed with vestibular migraines without headache pain. The best advice I can give you is to find your triggers - keep a journal for awhile and see if you can find a common denominator for the episodes. My triggers for Meniere’s are salt, caffeine, stress, heat and fatigue. My triggers for Vestibular Migraines are florescent lights, stress and fatigue. If I avoid my triggers as much as possible and take my prescribed meds, I am controlled and symptom free.
Best of luck to you,
Have you used this protocol? Has it been helpful for improving the dizziness? I just started this protocol so any feedback helps.