Ok, this new symptom is driving me absolutely nuts- spine tingling, especially at night. Has anyone else dealt with this? It’s like my whole spine has little invisible spiders crawling down it. There’s a bit of a numbness feeling too, especially at the base of my spine which sometimes spreads down my right leg. My right leg is also often weak. I’ve already had two MRIs, one brain and one upper cervical spine, and 2 CTs of the head. The only thing found in my c-spine is slight reversal at c4 & c5 from an old whiplash injury. My brain MRI was clear except for a shwannoma tumor that was later removed from right sphenoid sinus. So I don’t think it’s a big scary indicator of something, but it’s still causing a lot of anxiety and is making it hard to sleep at night. Specifically interested if people who were at some point, or still are, mostly confined to bed from VM/MAV, have experienced back problems? I’m wondering if its being caused by how long I am not on my feet. I walk as much as I can everyday but because I am still waiting on getting symptom control (first neuro appt in a couple weeks), I am just unable to get up much at all. Tingling/numbness and weakness are fluctuating 24/7 symptoms for me and this new back/spine symptom is just really pushing me over the edge
Ants. I always describe it as ‘ants’ crawling about under my skin. Don’t recall ever having it all the way down my spine just the back of the neck and down maybe level with you can can feel the top of my shoulder blade. But, yes, very familiar to me. And general tingling, almost shivering some describe as ‘goosebumps’ or almost shivery, ‘about to go down with the flu’ type stuff. Again, very familiar on a daily basis over years.
Numbness. I’ve had periods of weeks of being bedridden and yes numbness. Don’t recall back pain though I’ve found I get a lot of that once I’m back upright. I always blame that on the fact balance not good after an attack one doesn’t stand correctly and poor posture results in back pain.
An ‘old whiplash’ injury. That could be the culprit for VM. We get many similar on here and a long delay such as to not even suggest a connection isn’t uncommon either.
ha, well I don’t feel so alone in my analogy now. It’s pretty unsettling. I haven’t felt the shivering I’ve seen described on here. My muscle spasms are more of the very acute visible muscle flutters/spasms that, at least for the past few days, have actually been calming down (fingers crossed).
And yeah, I’m sure the balance issue is totally affecting spine alignment. I continuously have this huge knot now off c2/c3 that loves to cause tension headaches.
The whiplash question has been intriguing me too for a while now. I couldn’t sleep until 6:00am last night (morning. ugh) and was actually doing some research on VM and whiplash. There definitely seems to be a good amount of research into the correlation. I’ve been thinking about setting up an appt with an upper cervical spine specialist. They’re trained in extremely gentle, adjustments of the c-spine that supposedly can have pretty significant results.
I sometimes have the feeling of ants crawling in my left ear. One time it was so bad that I saw a doctor who looked into my ear, but could not see anything.
As for back pain: If I don’t move every day, my back starts to become painful. Are you able to do some stretching exercises? They always help me.
I had this recently (both back tingling and back pain) during a nasty bout of Gastritis and apparently acute GERD.
Bear with me on this:
The stomach area is highly innervated and pain and irritation from inflammation there fans out across the body especially the back and arms.
You are especially at risk of this at night when supine and most of all if you’ve eaten or drank late.
Just a thought and relates to my recent Post here about a possible link with MAV (Trust Level 2 required - earned by sufficient positive, active engagement with the forum): https://mvertigo.org/t/reflux-revisited-advancing-the-role-of-pepsin/20940/2?u=turnitaround
Might be worth ensuring you don’t eat (or drink a lot) past say 6pm and have a smaller evening meal to see if that improves things. You are definitely advised not to eat anything at least 3 hours before going to bed but in my experience it is worth being more disciplined than that.
If that improves things then this might be related to your digestion? Anyway can’t harm you to give it a go?
@Katharina Oh, crawling in ear feeling sounds terrible Stretches is definitely a good idea. I started doing a couple for sciatica a few days ago and it does seem to be helping with the pain. I’ve also been having a couple better days and have been on my feet more in general. I’m not going to get my hopes up that I’m “getting better” as an overall trend but I do seem to be in a bit more of a remission phase for the time being. Last time I was feeling better it lasted 10 days before I crashed again.
@turnitaround I’m definitely open to GI problems as a culprit or compounding issue. I have IBS and have been pretty interested in Gut-Brain theories. My mom has a history of chronic migraines pre-menopause, fibromyalgia, and ongoing GI problems. And when her fibromyalgia acts up (which I’ve read has some overlaps with how migraine operates) her GI problems act up too. So the connections makes sense to me. I do eat very close to going to sleep and currently have a terrible sleep schedule. I’ve had awful insomnia (both in getting to sleep and in waking up in the middle of the night) since this whole VM illness started, so I can imagine a better sleep schedule and meal routine could help. I’ll try making sure I eat earlier in the evening and see how that affects me. Thanks for the suggestion
It is great to hear that you are feeling a bit better @OffBalanceOffGrid. Don’t be too pessimistic about the remission phase ending soon. Last time it has lasted for 10 days, this time it may last for 15 days and the next time for even more. The mind is very powerful, if you tell your mind “I’ll be bad again after 10 days”, your mind might oblige and you’ll feel bad again after 10 days. But if you think “This time the remission phase will last even longer”, it might.
Good point, @Katharina ! I’m a pretty cynical person (one of the reasons I live hidden away in the middle of the woods lol) but I definitely agree that the mind and body are powerfully linked. I’ll try to come up with an encouraging mantra for myself
I’ve had similar experiences. Between episodic and chronic VM I suddenly developed ‘something’ eventually classed as IBS but retrospectively I class it as all part of VM. Again connections made sense to me when I remembered as a child I had something that could well have been abdominal migraines. On here we’ve discussed this in detail before. There are specific threads on this. I’ll link if I can. Btw from what I’ve learned from participation in Tai Chi digestive issues are the result of stress. Gastritis was one mentioned specifically @turnitaround
Mantras are good. Never thought I’d ever say that. I always looked aghast at yoga folk as I’m another cynic but no I’ve subsequently proved them to be good.
The part about abdominal migraines as a child is really interesting. I remember abdominal pain starting for me around age 6. It was pretty chronically awful, but I don’t think a cause was ever found after doing ultrasound, etc. Could be abdominal migraines was the case for me too. Now that I have chronic VM, I can definitely look back on my life and see where this may have been presenting in various episodic forms all along.
I only skimmed the rest of the thread so please pardon if this has already been said, but I read somewhere recently that the tingling is “sensory aura”. In any case, I mainly replied because you mentioned walking but otherwise not being up a lot. If you are sitting a lot, please remember to elevate your feet! Lie down and use pillows to elevate feet to heart level daily. Good luck!
Surely this is a very bad idea if it is stomach related? (See my post and linked post above)
With MAV you usually want to be elevating the head in any case?
May I ask your reasons for suggesting this strategy? To relieve backache? People with heart/blood flow conditions are advised likewise. People with GERD are generally advised to sleep sitting upright virtually, on three or more pillows. My mother-in-law suffered both and slept many years in what could only be called a ‘V’ shape when viewed from the side. Always looked so uncomfortable to me and gave her terrible backache. Relaxing with the spine gently extended is a better way to ease tension I’ve always found.
Page 5-7 onwards maybe?
My only reason for suggesting it was the blood flow safety. Although I said lie down to elevate feet, I wouldn’t suggest sleeping that way. However, if it is contraindicated entirely, then walking may be the only way OP can encourage the blood flow from the legs. Edited to add: Or massage for legs?
@TFeech Thank you for suggestion, but I’m not worried about my blood circulation. I have no circulation problems thankfully and normal blood circulation has no problem with flowing against gravity. Prolonged bed confinement (not just rest), especially wherein one can not move much or at all can definitely result in general loss of tone, including affecting the strength of the vascular system, but in my situation, I’m more worried about how my back is being affected. On a good note, the tingling and other symtpoms have been more subdued the past few days so I’ve been generally more up and about
I get these sensations almost every night since my accident. I have reversal and radiculopathy at c4, c5 and c6. The orthopedic surgeon wants to do fusion surgery, but I want my head injury/migraine/VM addressed first.
Anyway, I’m usually up 3-6 times a night alternating ice/heat on neck/back. I do gentle yoga stretches some nights when it’s really bad.
There is more information related to this under a topic called “Body Vibrations” that you may want to check out.
I hope I copied this link OK: Body vibrations
I’m not sure if mine is coming from my neck injury or migraine/VM, but I can definitely relate to the spinal sensations especially at night.
Oh thats definitely interesting (and awful sorry you’re also suffering). I wouldnt be suprised at all if its a contributing factor/compounds a central nervous system condition