Lost. Need advice.

Dom · June 4, 2023, 4:22pm

Hey guys,
I need your thoughts.

So, as I stated before my illness came in drastically sudden. And there is a lot of things that have changed, symptoms that improved, symptoms that worsened, other symptoms that went away, and new symptoms that emerged. But there is one thing that never changed, I still don’t know what the hell is going on and it’s a wild goose chase.

I suspected my heels, brain, vestibular nerve, digestive system, immune system, neck, eyes,… etc.

But over time I ruled out some of the above. Now I can’t get the idea of this being a structural issue outta my mind.

I believe it has to be one of the following that’s been ruining my life: Cervical ligamentous instability, vertebral artery dissection, TMJ.

My old symptoms were: headaches, photophobia, phonophobia, trampoline walking sensation, gravititional pull sensation, nausea, constipation, tinnitus, insomnia, interrupted sleep, difficulty speaking for a long time, a little bit of a brain fog.

My current symptoms are: headaches, upper cervical pain, TMJ burning pain and tension, rarely nausea, rarely gravititional pull sensation, and difficulty walking bc of the headaches I get whenever I try to walk (running is fine tho😂)

My symptoms are very intense in supermarkets, hospitals, clinics. That’s weird ik but it is what it is.

Now I’m very lost and disorganized like my post. I need some guidance, some thoughts. Lots of questions in my mind that need to be answered: if it’s a TMJ problem, what should I do? Could it be fixed? How do I even get a doctor to think of TMJ as a real issue? And if it’s a cervical ligamentous instability, how could I know which ligament is injured?

Excuse me for writing in such a disorganized way. But it is really way more organized than I am now.

turnitaround · June 4, 2023, 5:05pm

You are going to find it next to impossible to get a definitive answer in this space (and in any case we can’t diagnose here).

The medicine simply isn’t advanced enough to be sure of an exact cause.

The engineers in us want to find a solution, know the definitive answer, but the systems here are simply too complex.

The only thing you can rely on is:

the treatment protocols are tried and tested and help people improve significantly.
time usually helps massively as there’s almost certainly a big dollop of spontaneous recovery.

I’m certain mine had nothing to do with TMJ to begin with but I experienced TMJ at one point during my long recovery process. Very strange, and apparently nothing to do with the initial problem.

I have a suspicion TMJ might have occurred because for some reason my Eustachian Tube started to get ‘sticky’ and this subtly changed the tensions needed to control my jaw position, but I will never be sure. Another very likely reason is the “relaxation exercises” that were given to me by the psychotherapist who was assigned to me involved muscle including jaw clenching as a way of encouraging a “relaxation phase”. Just ridiculous when looking back upon it!

I suggest sticking with VM/MAV protocols and being patient. Very, very patient, because it can take years to get better (but you get better nevertheless).

DizzyandConfused · June 4, 2023, 6:57pm

I think we’ve all been there, even those of us who’ve been given a diagnosis of MAV, there’s always that doubt, that maybe something has been missed or not tested. In my case I’ve gone from thinking my neck is responsible. I have hypermobility in many areas, not least my neck. The heavy head and feeling like my neck can’t support my head has been one of my constant symptoms.

Yet I’ve had a neck x ray which showed no misalignment and a brain MRI which showed no spinal cord compression or impingement. Some chiropractors believe people with hypermobility can have cervical neck instability, which certainly mimics many of the MAV symptoms, yet mainstream medicine seems to disregard this as a thing.

I also have Fibromyalgia and wondered if my symptoms were due to that but it seems unlikely. I’ve never had balance issues and I’ve had Fibro for 18 years. The tendency of doctors to blame everything on Fibro because it gets you out of the office was one I was at pains to avoid. I insisted on a second opinion as according to doctors Fibro is responsible for climate change and world hunger and its a dismissive, lazy attitude.

You can literally torture yourself reading medical websites and forums. I know because I did it. You become hyperfixated on yourself and your symptoms. It becomes a full time job and takes up so much time and energy. I found myself becoming someone I didnt like that much, I felt I’d become self centered and self absorbed. When you’re unwell and don’t know why you tend to focus on yourself way too much.

One good piece of advice I read on here is be bored with your symptoms, stop letting them control you and what you do. Stop focusing on them all the time, get a diagnosis, start on some meds, try some of the supplements like magnesium and co enzyme Q10. Try not to avoid doing things because they make you dizzy. Avoidant behaviour can be a tough habit to break.

Get some good quality sleep, try the migraine diet or cut out well known triggers like caffeine and cheese/ chocolate. And try and reduce stress and anxiety. Stress seems to be a very common reason why some people get MAV.

Dom · June 4, 2023, 7:51pm

I’m really trying to ignore them. But it’s just hard. I’m 23. I got my first job after grad and I lost it one month later bc of this goddamn thing. Meds don’t seem to be working. I took Lexapro and Tegretol and it just got worse. I’m trying supplements. I know life goes on and we have to keep going but I’m trying to get rid of that hard mode that’s been turned on. Anyways thanks for your response and thanks for the advice.

DizzyandConfused · June 4, 2023, 9:02pm

I tried 7 meds before I found one that worked. Venlafaxine has really helped me. I didnt know if my symptoms were MAV or PPPD, there’s a lot of overlap. But the SNRI class of antidepressants seem helpful for both and certainly in the US Ven seems to be considered the gold standard for migraine disorders.

Timothy Hain is considered one of the leading doctors in this field and he’s a big fan, I found its really reduced my visual vertigo. There are dozens of migraine preventatives out there.

sheepdog_lord · June 5, 2023, 2:29am

This type of thinking is not going to get you anywhere – trust me, I’ve done it and it caused me to get worse before I got better.

Dom · June 12, 2023, 10:23pm

Then what’s a better way of thinking?

sheepdog_lord · June 12, 2023, 10:35pm

its not your job to rule out particular illnesses and resort to trying to figure out what’s wrong with you by yourself. Leave that up to a doctor you feel like you can trust

Dom · June 14, 2023, 12:48am

You wouldn’t believe it. But I live in a country where medicine is underdeveloped. Medics here don’t take you seriously if you don’t have a very obvious problem in their traditional scans. I went to 4 ENTs so far and they all just checked my ears with their otoscopes and dismissed me as an ear patient. Neurologists just look at my unremarkable brain MRI study and dismiss me as a patient basically. We don’t have different specialties like you do for example we don’t have neuropthalmology or neurotology. We just have the very traditional neurologists and neurosurgeons.

I’d be more than happy to find that doctor but he has to believe in my condition in the first place.

sheepdog_lord · June 14, 2023, 2:14am

which country are you located in? You might want to take advantage of some kind of telehealth program…you just really don’t want to be your own doctor. no good will come of it

turnitaround · June 14, 2023, 6:43am

Talk to your local primary health care doctor and ask if you can try low dose Amitriptyline (10-30mg nocte) to see if that improves symptoms. You won’t need a dose any higher than they might prescribe to even aged patients. Show them Hains website. That might bring some significant neurological relief at least. That might at least address getting your life back. Then you can tackle the wider question more calmly and travel abroad if necessary.

See:

I’m not suggesting (or telling you) you have MAV, but the treatment protocol is used for a broader range of patient diagnoses, is conservative, and worth a try.

Amitriptyline is particularly good for those who can tolerate it as:

reduces (or eliminates) dizziness
reduces (or eliminates) nystagmus
reduces (or eliminates) nausea
reduces (or eliminates) anxiety
improves motion tolerance
can help sleep

And you may only need to take it whilst things calm down in your vestibular system, whatever the cause.