Intense leg & body heaviness/weakness?

Hey, everyone. I’m new here and would love to know if this is a symptom other MAV suffers have? It’s really concerning me…

I’m a long suffer of migraines, but was just diagnosed 6 months ago with vestibular migraines after waking up one day feeling like I was spinning and on a boat. Saw an ENT who gave me every test under the sun to rule out positional vertigo, as well as a CT scan. Everything came back normal. He told me he was very suspicious of VM and referred me to a Neurologist who agreed and started me on Topmax which I took for a couple weeks but stopped due to horrible side effects. Haven’t been able to get into my neurologist yet to start a new drug (appointment wait time was 2 months)…so I am currently untreated.

Long story short. Since this started I’ve had this sort of “jelly leg” feeling. But it was manageable.

I had my first huge MAV attack about 6 days ago and have been nearly bedridden because of the extreme heaviness/weakness in my legs and body. I just feel like I’m going to collapse every time I stand up, like a massive weight is pulling me to the ground. I’m so scared this feeling won’t go away…Has anyone else had this feeling with MAV?

Although this is an old post i wanted to reply for anyone lurking the forums that are just not feeling up to replying.
I have not been diagnosed so i can not say for certain this is mav however i have found all of my symptoms scattered throughout this forum. I experienced at my worst a feeling of pressure in my head on my left side. extreme off balance walking, spinning sensation. blurred vision in one eye as well as mild adies pupil(one eye dilating slower in response to light) to mild symptoms like side discomfort, warm sensations in my lower back ,leg weakness, brain fog, A strange gate while walking and small motor skill complications. none of my symptoms came with a traditional headache however at times i felt like one may be starting it is fleeing and never lingers and i am not experiencing any of this as pain. i have cut out caffeine completely and never reintroduced it. i did try cutting out other things on the migraine diet and reintroduced some with no negative effect however bananas did have a small negative effect so i cut them out completely also. my symptoms have greatly reduced but have never went away. i also am taking cannabis daily throughout this experience both through medicated coconut oil and smoking joints.

I’m also waiting for new meds to kick in, after terrible Topamax experience. And heavy legs today. Walking on a dock feeling as well. Get an appointment with someone else! Try other meds, supplements, diet. I’m nearly bedridden as well. Now getting worse. Not sure why.

I have described my legs exactly like that, “jelly legs.” For me it has started after being apartment bound for almost a year (this January) and only going out for a daily short walk and doctors appts. I assumed it was muscle weakness. I will also get the the heavy body feeling. At first it felt like an anvil was on top of my head, but lately it’s been worse, feeling like my body is weighted and about to splat flat on the ground. It seems to get like that after being exposed to extreme motion (like elevators) or extreme light and sound sensations (like stores).

I was investigated for MS because of the extreme heaviness in my thighs and the feeling that I would not be able to take another step. I kept on going because I was walking my dog and have just got used to this feeling which is worse when I am having some other of our horrible symptoms. I do try to ignore it but some days that is easier said than done.

I used to get the one leg is heavier or longer than the other sensation.

I wonder if this is a classic BPPV symptom, your brains response to upset signals from your inner ear. My rationale is that your brain aggregates data from your balance, hearing, sight, muscles, joints and pressure senses. If one of these goes significantly off from expected behaviour you get a range of interpretations from the brain, and one of those might be inappropriate conclusions about the status of your legs.

You may note that you can get other hallucinations from vision too for potentially exactly the same reason - i’ve seen totally stationary floor rock wildly in front of me.

The reason that BPPV could be the source is I believe the brain, so used to ‘clean signals’ from the very well protected inner ear on which it has become so reliant is amplifying potentially very slight disturbances to very big results.

This theory would explain the huge variety of symptoms we experience and how they fluctuate so much. And how they might ebb over time.

This is how vestibular suppressants might work as a solution as it is dampening the signals from the inner ear, thus also dampening a potentially corrupted/noisy signal when debris is involved.

The good news from this is that we should not be so panicked or anxious when this happens, it doesn’t necessarily mean anything nasty has happened to you, its just an artefact of the process and a bunch of otherwise harmless debris floating about.

Rather than use vestibular suppressants, one could envisage the brain habituating to more noise from the inner ear. I suspect this would happen naturally over many years of having this trouble.

The challenge for the brain and the inner ear is that being a fluid system with varying amounts of debris moving around in it, the range of possible scenarios is endless, so very hard for the brain to retrain. This might be the key to understanding why we have migraines - the brains executive learning function going beyond its useful boundaries - just a hypothesis.