So, I have been dizzy on and off since May 23rd. Before that I had the occasional classic migraine headache with a very short shiny aura beforehand. Never super debilitating - a day off work usually sufficed. But when I suddenly got vertigo in May everything changed. Numbness all over my body that came and went. Tingling in my limbs. The feeling of being on a boat. Strange/off feelings it’s hard to describe but I’m sure people here can relate. Weakness in my limbs on and off. Brain fog. Nerve stuff. Etc.
I haven’t been officially diagnosed yet; I see a neurologist for the first time in exactly a month. I’ve seen an ENT who has prescribed nortrip and I’ve been taking that for just over two weeks. Not sure how well it’s working yet; I have been super dizzy and nauseated a few times in the past two weeks but on the other hand the pain/pressure episodes have been less frequent and severe.
It does sound like a vestibular migraine so far, but I also had an MRI of my cervical spine and I have a small disc bulge which I understand can cause some symptoms too. The other thing is that sometimes I have these attacks or episodes of pain and pressure in my middle to upper back. They often seem to come separately from the dizziness and nausea but sometimes they are together. It’s the pain and pressure episodes that the nortrip seems to help a bit. But has anyone ever heard of migraines in the back?? It doesn’t seem to fit any description I’ve found yet but I am still new to this.
I’m confused and exhausted at this point.
I should add that I had a hearing test today which was fine and the ENT is referring me for balance testing (finally!)
If anyone has any comment whatsoever or just words of encouragement I would love to hear from anyone at all!
Sorry you had to come but you do seem to have hit the right place at least with finding an appropriate support group. Pleased to hear you are booked in to see another specialist. Best move is to try for a more definite diagnosis then go from there. You will find the Nortriptyline should help with any chronic pain. Despite actually bring a tricyclics antidepressant it and it’s cousin, Amitriptyline, have been used in small doses to treat any long term pain for decades.
No medics to diagnose on here I’m afraid but whatever the root cause of your own condition back pain can be a result of any vestibular condition if the balance is affected. If your balance is adversely affected in any way your body is thrown out of alignment to some degree and that can cause pain which often occurs in the back, Worked that out for myself years ago. I still get back pain on bad balance days. Of course not being able to stand correctly due to VM makes for the perfect storm because misalignment affects the way the spine communicates with the brain and that can throw the vestibular system into further chaos and we can then become even more off balance. So thinking about it which I’ve not really done ever before, what I’m actually suggesting is the back pain could be either/both cause and effect. Be interesting to hear what the specialist has to say. At least anything visible on the MRI is obvious and should receive prompt attention.
Checked out the archives here and surprise, surprise …. You are not alone, that rarely happens, somebody else has usually been there first!
When I have a particularly bad episode, I get unbearable upper/mid back pain that radiates down from the back of my head and neck. Sometimes it’s even more debilitating than the vertigo. Back and neck pain can absolutely be caused by migraine. I had it chronically for years and never thought much of it until my VM diagnosis. It turns out it’s not normal to be hurting all the time at my age. The things I’ve found that help are: Advil (it takes the edge off a little), a trigger point massage roller, a heating pad to lie on, and gentle stretching. Finding medication that helps control the migraines (at least some of the time) was also key for me.
I realize I should’ve introduced myself a bit better as well and said hello to everyone.
Hello everyone! I’ve been lurking for a while and reading and this group seems so supportive and helpful.
Dizzyqueen, thank you for sharing about your back pain. Your back pain seems quite similar to mine. I really need to look into a heating pad. Do you have a good one to recommend? A warm-hot bath helps me a lot too but I can’t always be in a bath!
Onandon03 thank you, what you said about our bodies being thrown out of alignment really resonated with me. I was looking in a full-length mirror the other day and I looked like I was leaning to one side from the waist up. I’m supposed to go to physical therapy soon so hopefully that’ll help.
I had a hearing test and I have balance testing coming up so I’m curious to see what those results are like. I think my hearing is fine but my test result says that my right middle ear is “Ad” rather than A so according to dr google something is too mobile in there - I have no idea whether that can cause or worsen dizziness so I’m trying not to speculate til I hear from the doctor.
Anyway, it’s nice to meet you all and thanks again for your replies and to whoever set up this forum in the first place.
@Lildizzy sorry to hear you’re going through it I also have had a huge increase in back and neck pain after developing chronic VM. I agree with @Onandon03 about balance compensation causing all kinds of stiffness and misalignment. I just saw a neurologist yesterday who examined my neck and back and said my muscles “feel like concrete”, so you’re not alone. Have you heard of upper cervical spine specialists? They’re NUCCA certified (national upper cervical chiropratic associaton) and my neurologist suggested seeing them to help cervical spine alignment issues that could be compounding/contributing to migraines. I have reversal of c4/c5 from whiplash injury and will be seeing a cervical spine specialist to help re-align. If you’re able to, for back pain I’ve also been doing very gentle stretches everyday and try to walk as “normal” as possible so I don’t get too messed up. Youtube has been a good resource for looking up stretches and gentle yoga positions (which seems like a mixed bag for VM sufferers) for balance related problems.
Just a little update — it turned out that I had BPPV, which the audiologist was able to correct. I still have symptoms but they are much more mild now, and the vertigo is gone (I have some dizziness snd occasional nausea because of that but no more vertigo when I lie down or put my head back… or at all!). Which of course is great!
After the balance testing and the BPPV treatment i felt a bit sad as well as relieved. In early June the ENT did a quick lie-down test and looked in my eyes for literally a few seconds before concluding that I did not have nystagmus and therefore no BPPV. So I was needlessly suffering from vertigo for over 3 months. So, if anyone has a doctor do the same thing then I’d advise insisting on proper balance testing as nystagmus apparently can be very hard to see.
I have also been doing some VRT, and I have seen a neurologist who gave me some neck and calf stretches to do for myofascial release. He suspects an old whiplash injury might be at least partially to blame. Overall, I am definitely doing much better. I have slacked off on the exercises though and my symptoms have flared a bit in the past week or so. I need to get back to doing the exercises regularly.
Pleased to hear you seem to have got it sorted. Am I correct in assuming you are no longer on the Nortriptyline or indeed any other ‘migraine preventative’ medication.
That’s good you saw a balance therapist and got to the bottom of the cause of your vertigo. I’m interested in what they said about your symptoms though.
Did they say these symptoms were from BPPV? Or did bppv cause a VM which gave you these symptoms. Glad you’re feeling better.
I am still taking the Nortriptyline. I would like to stop taking it but I’m worried that the more severe episodes will come back. I am doing much better in that i have mild dizziness rather than vertigo but I’m still having a lot of the symptoms (feeling of movement, pressure and pain in back, dizziness, visual stuff) but much more mild. I am able to drive and do “normal” stuff as long as I listen to myself and rest when I need to.
Some of my symptoms remain a bit of a mystery, i think. I think I mentioned that the MRI showed a disc bulge that may have caused some of the symptoms (the numbness is mostly gone now) and the neurologist thought that the myofascial lines issue may have been causing migraine attacks and other odd symptoms too. As I said, i need to resume the exercises he gave me - my symptoms have been in a bit of a flare.
I am also still doing the migraine diet (learned about from the dizzy cook) for the most part. I am strictly no caffeine and also watch sodium intake.
So the following things seemed to have help (continue to help):
Heal your Headache diet
Nortriptyline
Getting out and doing day-to-day stuff - driving, walking, stairs, going to work (I have a lamp in my office which seems to help)
Magnesium/B2/CoQ10/vitamin E.
I also read the book Rock Steady and found that one thing in particular was helpful: when I feel dizzy I focus on my feet on the floor and work my way up, focusing on the sensation of touch.
It has been a pretty confusing time, so I feel that my answers to the question of how am I doing and what’s going on, are still convoluted and confusing in themselves. I’m still not sure what happened (or continues to happen)!
I forgot to add the balance testing and BPPV treatment helped of course! I have had no spinning vertigo since then, although it often feels like I’m going to but then it doesn’t start. I still have dizzy/foggy feelings in my head at least for a little while almost every day. But I just keep doing whatever I’m doing at the time and use peppermint oil/eat ginger/take magnesium or if i have time, take a nap. Naps seem to help me; I know they aren’t good for everyone.
Thanks for the detailed reply which clarifies your previous post. So happy you have been able to implement a suitable treatment plan to which you are responding. Long may it continue to help you.
I also have had a huge increase in back and neck pain after developing chronic VM. I agree with