Hi, good evening, I’m new to this site. I have read some comments and useful information about vertigo. My story started 10 months ago in one of my yoga classes that I used to take at that time, I was doing my normal routine when suddenly the whole room began to spin fast and started feeling very nauseous and dizzy, since then I have had unbalance and dizziness 24/7 non-stop. I have seen 2 ENT doctors; 2 neurologists and I have also tried physical therapy where I have had the Epley maneuver performed in 3 different locations. The diagnoses have been varied, they tell me that I have BPPV, another doctor diagnosed me with Vestibular Migraine and tried different medications such as antibiotics to rule out any inflammation in the ear, betahistine, and other medications for vertigo but nothing has worked for me. I also had an MRI and a study of the balance and function of the ear, and everything went well. I am currently suffering from constant depression and anxiety because of this condition that I have not been able to return to a normal life for 10 months, one of my doctors suggests that I start with antidepressants. I’ve been doing various exercises at home to improve balance for about a month now, but it doesn’t seem to help at all. I would like to know if anyone has been in the same situation as me for so long what suggestions could they provide me as I am desperate to find a solution to these symptoms. I appreciate any comments.
My best advice is to try and see a neuro-otologist! I was suffering for 4 months before I was diagnosed and every doctor just kept saying it was anxiety which I knew it wasn’t. I’ve been on migraine meds now for just over a year, I’m still not back to normal but I saw an improvement in my symptoms after about 3 months. I still suffer 24/7 but not as bad but I hope I eventually make a full recovery as apparently it is possible…
Welcome to the forum and sorry you are here, I’ve also been suffering for 10 months, mine started after having a regular old migraine the day before. Walking home I noticed I felt off balance, trampoline floor, marshmallow floor sensation which has never gone away. As I have a history of migraine and my brain MRI was clear thats what my neurologist has gone with, VM otherwise known as Migraine Associated Vertigo.
I’ve seen an ENT doctor since who ruled out other vestibular disorders, like Meniere’s or Vestibular Hypofunction. I dont have hearing loss or tinnitus but I do get some weird symptoms in my right ear like I can hear my own voice inside my head sometimes and I’m very sensitive to sound in that ear. My left is ok.
If you’re in the UK your GP can start you on a very low dose of tricyclic antidepressants like Amytriptyline, Nortriptyline, which work very well for many people. Then there are blood pressure drugs, anti epileptics like Topamax and a whole host of others.
It really is trial and error to find something that works and you can tolerate. If its MAV we are notoriously sensitive to medications and you might end up trialling several, like me, or you might be lucky and the first one you try might be the one.
I think James, who runs this site got on very well with Amytriptyline which was the first one he tried. Not only can the antidepressants control the symptoms but they can help relieve the depression and anxiety that so often accompanies them. Anxiety feeds into the dizziness and makes it worse, thus ramping up the anxiety, then you’re trapped in a vicious circle.
Its very very common to feel anxious and the depression kicks in the longer the symptoms persist. I must confess I’ve had some very dark moments in the last year. And I know other members have felt the same. You really do need to get on something that can help with that. .
Be aware though that it can be a slow process and it will take time. I’m luckier than some that my symptoms are worse when I’m moving and non existent when I’m lying down or sitting down. If I never needed to move again I’d announce myself cured.
Have you any history or family history of migraines?
You are not alone! My vestibular migraines came on suddenly. I was fine and then I was watching the Olympics one night a year ago and I had a sudden attack of vertigo- the world was spinning and I couldn’t stand up and I was nauseated and had to climb around the floor to get anywhere. It all went downhill after that. I had an MRI, normal. The epley maneuver didn’t help. I’ve been through physical therapy, I haven’t had much progress. It’s been a year now. I’ve lost screen tolerance and since my job is screen based (I work as a copy editor), I’ve used up all leave and FMLA, I’ve had to resign.
My vestibular migraines are currently being controlled with topamax, but I now experience debilitating traditional migraines with the screen intolerance. I won’t give up though. This happened suddenly and I have confidence my brain will be able to repair as well. I’m working with a Headache specialist on finding the right preventative and have been having botox treatments. There is hope. And our bodies can adjust to anything, believe me.
You’ve written my story. I wondered if anyone else had the dizziness for 24/7. (Since Aug 2022) I woke up one day and it was there. Never has subsided. I do some ENT testing tomorrow. This does not come and go. Now there is news that tinnitus - which I also have, may be connected to Covid and the Covid vaccines. I even did acupuncture and the therapist said she has seen many patients with dizziness as a result of Covid.
I took meds for two months which did not help. Had to wean off of them. Hoping to get a diagnosis and treatment for relief but based on what has been written in this forum, it doesn’t seem like that will happen any time soon.
I am very grateful that you have let me know about your experience, it is very important to me and I am very sorry to know that there are so many people suffering and fighting against this condition. I have been about to quit my job because there are days when I have very strong symptoms and it is impossible for me to do my job (I am a preschool teacher’s assistant) it is a job that I have to be super focused and active in. all time. This whole situation discourages me by not having a normal life and emotionally it affects a lot, I have learned to appreciate life even more since this situation changes your life in a second as it has happened to us, thank you for all the encouragement you have given me through From this chat, I sincerely hope that we can recover our health very soon, let’s keep the faith without losing hope that one day we will be well again.
Thank you very much for taking the time to share your story with me, I am very sorry that you are living this difficult condition for so long. I live in the United States, in Phoenix Arizona. I appreciate the information you have given me about antidepressants, I agree that sometimes it takes time to find a medication that works for you, I have tried 5 different medications for anxiety in the past. I am going to start a medication that worked very well for me years ago. I hope this time it will not be the exception. There are days when I find myself desperate because each doctor I see gives me a different diagnosis and I honestly feel that I am stuck between physical therapies and exercises that have been recommended to me to do at home and I do not see any progress. but I don’t want to lose hope that one day I’ll feel good again. Thanks to the members of this chat who have given me hope by reading their stories and knowing that you are not alone in this, there are other people just like us fighting against this condition. I wish to hear from you soon with very good news about your full recovery.
I am very sorry that you are also going through this difficult situation. We just have to keep looking for an answer since we have no other option but this forum has been very encouraging and informative for me. I also tried acupuncture and it didn’t work for me. My mom has suffered from the same condition for many years but her symptoms are different, they come and go sometimes, she doesn’t have any episodes for months or even a year and it doesn’t last more than 3 days. I have also read about vertigo that has been related to vaccinations as you mention, even my therapist also believes that it may be a related issue, since the number of people suffering from this same condition has increased. I wish you good luck and I hope we find an answer soon about what is happening to us.
Thanks for your suggestions, today I started to do my search for an oto-neurologist, I hope I can find a better answer to all my questions about my condition. It’s good to know that there are people like you who have been able to improve. Also today I started taking some supplements-vitamins that a person shared in this forum which helped him control the migraine and has been able to improve his vertigo symptoms. I have tried many things but I must continue and not give up in the search that one day I can recover my normal life. I wish you good luck with your recovery.
I’ve never had covid thankfully, but have had all my vaccinations and boosters. Who knows if my MAV is related or not? I had a booster in December 2021 and then in April 2022 I got this awful imbalance. Is it too long after the jab to be related. I cant ask any medics because as far as they are concerned the covid jabs are wonderful, which they are. However that approach doesnt help people in our situation. We need objective evidence.
Due to necessity the jabs were fast tracked and clearly long term possible side effects weren’t studied. I dont want this to become a pro or anti vaxx discussion but I admit I have wondered more than a few times if there isnt a link between my MAV and covid jabs.
I, like you had sudden vertigo. I had been working out hard and one morning I woke up and had unbearable vertigo. I went to the local ENT and they said I had Meniers. They gave me three cortisone shots into the inner ear. That did not help. I went to Vanderbilt (prestigious school / hospital in Tennessee). The ENT there also gave me cortisone shots into the ear. He then sent me to a neurologist about VM. None of this worked. My vertigo would last for 10-18 hours. I could not get out of the bed. I could not move an inch for fear I would vomit. I too was depressed and did not have a good outlook on life. My wife saw a Facebook advertisement for a chiropractor who mentioned vertigo in his ad. I had nothing to loose. His specialty was the Atlas bone at the base of the skull. I thought at first it was a snake oil salesman. I was wrong. I have had vertigo once in two years and that was due to vestibular neuritis. The vertigo never ended so I knew it was something else. I was given high dose of prednisone for two weeks and that went away. I also have him adjust my jaw (TMJ) and that also helps. I would definitely talk to a chiropractor and see if he specializes in vertigo.
Hello, good afternoon, thank you for your response. This information is very valuable to me, since at this moment I don’t know what else I can try to feel relieved. I have been going to the chiropractor for about a month for other health conditions other than vertigo, according to the doctor he has also been treating me for vertigo but I have not seen any change in my symptoms. Can I ask what was the doctor’s diagnosis in your case? Why did they prescribe the prednisone?
My chiropractor adjusts my atlas bone. It is the bone that sits the top of the spine under the skull. First, he has two “bathroom scales” side by side. He has me to put one foot on one and the other foot on the other scale and look straight out. If your atlas bone is line up properly, the weights should be almost identical on the scales. Each should read half of your body weight. When I first went to him, he took x-rays of my spine and skull at different angles. He showed me how the atlas bone was tilted. On the scales, they were off by 30 lbs. on one side. This was my initial visit. To adjust the bone, he had me lay on his table on my side and he gently pressed behind the ear several times. The pressure he used would go up and then taper back down. After several rounds of the adjustment that day, he had the scales within 2 lbs. of each other. I basically felt nothing and thought he did nothing. I thought I was out $400 for the first visit. I woke up in the middle of the night and the whole side of my face burned. Since then I have never had the debilitating vertigo as I did have. He keeps making the time in between visits longer and longer. I am up to one visit every 3 months. The name of the chiropractor is Dr. Austen Sheumann at Horizon Spinal Care. The one time I had vertigo since I have been in his care wasn’t related to the atlas bone. It was vestibular neuritis. Inflammation of one of the vestibular nerves. Totally different feeling. It never stopped. You would feel like you were always falling forward. I could still function through the day, unlike the previous bouts of vertigo. That is why they gave me the high dose of prednisone for several days. There are still days when I will have a weird feeling on the side of my head like it is going numb. I take 1-2 dimenhydrinate (Dramamine), but they are far between.
Ajovy or Aimovig injections, a 6 day round of prednisone pk, mezcline, corztine eardrops on which ever side is effected. It took me 2 yrs to find a neurologist who cared and same for ENT. Just keep pounding the crap out of every neurologist u can until u find one that will help you. In todays world u have to insist on help, even beg, cause noone is going to be your advocate, like in past years.
I don’t know if it helps you, but when my VM started it lasted for months and was really severe and debilitating. The symptoms were slightly different each day. It took a while to diagnose (vs BPV). Over time I have found (I’m pretty sure anyway) that I have triggers including red wine, that I avoid completely. Also, changes in barometric pressure (rainy days) triggered them. I started taking nortriptylline daily (really low dose), and sudafed when I felt one starting and that helped a lot. A scopolamine patch helped for very short term use only. When they started, I felt like it would never end, but now haven’t had symptoms for a long time. Someone recommended the book “heal your headache” but Buchholz and I found this very helpful. Just wanted to send some encouragement.
I took take Sudafed when I feel one coming on or beginning and it would help. That’s weird because my doctor didn’t understand why that would help. Is there any basis for Sudafed being helpful with MAV?
I’m not really sure why it helps except that it is a vaso constrictor much like caffeine.
I wouldn’t rule out any possible relationship to the vax and dizziness. Just my opinion.