Vestibular migraine: What symptoms do you experience?

Posted by klhe @klhe, Aug 12, 2018

good day members,

Johns Hopkins diagnosed me with vestibular migraine a little over one year ago. Prior to that no one knew what I had and I saw ENTs, neurologists, and many other Dr.s. MRI of close to two years ago shows all is normal. However, despite a respite of feeling almost normal for three months while taking a new medication (Effexor extended release at 75mg.) all of my symptoms came back full force for what I call episodes, at least once a week, and lasting up to three 3 days in bed. My symptoms for the last two years have been: popping ears, nausea, vertigo at the beginning which seems to have gone away and been replaced by dizziness and light headedness, tingling all over head, severe headaches, weakness to almost numbness in my arms, and severe fatigue. I can feel like a pressure in my head at times. I have not lost cognitive functions: that only occurred when I took Topiamate. My internist wants me to see a specialist at the Mayo Clinic, but I wonder if anyone else has experienced what my Hopkins Dr. calls very atypical VM symptoms?

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erin38 | @erin38 | Dec 23, 2020

In reply to @jenniferhunter "@nrd1 My vertigo was caused by misalignment of C1 & C2 that were twisted or tilted..." + (show)

@jenniferhunter

@nrd1 My vertigo was caused by misalignment of C1 & C2 that were twisted or tilted and stuck that way because of a muscle spasm prior to my spine surgery for cervical stenosis at C5/C6. When the muscle spasm came on it started a muscle headache in the subopcipitals on the back one one side of my head, or it caused ear pain and jaw pressure. Then if I moved my neck in particular, looking upward so I arched the neck, that set off light headedness and the world looked like it was moving and spinning. I lost my balance and fell down during one of the episodes and there was nothing I could do to stop that from happening. It was like spinning around when I was a kid getting dizzy. If you dart your eyes quickly, it can give that sensation or when you are the first car stopped for a fast moving train that is passing by and you are trying to follow it with your eyes. It really looks like the world is moving and you have to lie down and close your eyes to help feel a little better because your balance is off.

Sometimes just sleeping helps, and that may be because of the resting position that the neck relaxes a bit. A physical therapist can have you lie on your back to put the muscles on slack, and feel the spineous processes that stick out to the sides to feel if they are aligned. If you put your thumbs behind your ears, and feel for the notch at the base of the skull, that is where the spine processes of C1 sit just below that. My PT showed me how to check this. You should see a PT about this rather than try to fix it yourself because if there is spinal instability, that can have a lot of risk of serous injury. The vertebrae can be realigned by stabilizing the shoulder blade on one side and turning the head away from that against resistance from your hand pushing against your head, but you need to know what your pattern is for muscle spasms. That gets your muscles to realign the vertebrae by contracting and moving them. My spasms started on the left likely because my neck is tighter on that side because I have thoracic outlet syndrome that is worse on that side. A physical therapist is the best person to help figure this out and to work on correcting it. The vertebral artery passes through the side of the vertebrae, and having them twist and stay like that will stretch it, and can alter blood supply to the brain. That is what happens with Bow Hunter's syndrome which is much more involved than what I experienced. Since my surgery, my neck has calmed down and vertigo doesn't happen anymore after a C5/C6 fusion. I can still cause a muscle spam if I strain my neck position,and get a slight headache on the back of my head, but I can massage my neck and get it to stop.

Here is a link with some information.
https://americanmigrainefoundation.org/resource-library/vestibular-migraine/

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I truly appreciate all your insight and advice Jennifer. Happy Holidays to you!

Jennifer, Volunteer Mentor | @jenniferhunter | Dec 27, 2020

In reply to @erin38 "I truly appreciate all your insight and advice Jennifer. Happy Holidays to you!" + (show)

@erin38 Thank you! You are welcome. I'm glad I could help. @nrd1 In answer to your other question about scalp tightness, I didn't really have that. If I had a headache on the back of my head or into my ear from a muscle spasm from my neck, it felt like I had hit my head on something and the pain radiated from there. We all experience things a bit differently, and sometimes symptoms could be a bit different for the same type of issue if they vary in intensity. For example, itching is a very low threshold of pain signals that is experienced much differently, and pain has lots of levels and types of pain before it could become severe pain, and all of it signals nerve irritation. It's OK if we experience things differently, and there can be lots of other health related conditions that can alter the experience too.

Jennifer, Volunteer Mentor | @jenniferhunter | Dec 27, 2020

In reply to @nrd1 "@erin38-I have had brain MRI. I first experienced tingling on scalp and a sense of “fullness”..." + (show)

@nrd1 I think myofascial release physical therapy may be able to help you with the scalp tightness. There is a lot going on with the head and neck and jaw muscles. Here is our MFR discussion and a link to lots of detailed articles about related physical issues. If you haven't consulted about your cervical spine and had imaging, you may want to do that do in case spine alignment could be causing the ocipital headaches.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://myofascialrelease.com/find-a-therapist/
https://mskneurology.com/category/jaw-head-neck/

@seekinginfo | @nrd1 | Dec 27, 2020

In reply to @jenniferhunter "@nrd1 I think myofascial release physical therapy may be able to help you with the scalp..." + (show)

@jenniferhunter-thank you for your detailed input. I appreciate the time you take to explain. It started with feeling like I got hit in the back of head with a baseball bat. Could not get head comfortable on a pillow. It felt like cement when I laid down. I have had xrays, MRIs. All show “normal” which of course I am thankful for that. All of the physical therapy, such as massage and MFR, say my C2 feels slightly twisted forward. This feeling has slowed moved up over my forehead and into eye area. They want to throw meds at me, of course, while I am trying to get to the root cause. It is 24/7. Does not go away. And I’ve now developed vertigo with it upon looking up. The stress of the sensation only causes more tension and guarding, so it’s difficult to release the additional stress it’s caused. I greatly appreciate the links you provided. Thank you.

Jennifer, Volunteer Mentor | @jenniferhunter | Dec 28, 2020

In reply to @nrd1 "@jenniferhunter-thank you for your detailed input. I appreciate the time you take to explain. It started..." + (show)

@nrd1 You are welcome. I would encourage you keep working with physical therapy because a muscle spasm that twists a spinal disc can be treated and the problem may be resolved. I know for myself, if either C1 or C2 is twisted a little forward, it causes the occipital headaches by stretching those muscles and tension, and that progresses to vertigo if I would look upward because that also stretches the vertebral artery in the vertebrae and looking upward then compresses it. Thanks for confirming that is your experience too. If I feel a headache at all, I will lay down to put the muscles on slack and check my alignment of C1 through C4. I'm fused at C5/C6. I can realign my neck very gently because I have worked with my therapist on correcting this. I had muscle spasms and thoracic outlet syndrome making my neck too tight on one side. I address all of that tightness with myofascial work, and it works. I have a lot fewer problems with this since I had spine surgery and my neck spasms have calmed down. Any neck therapy can be a risky business, so you have to work with a PT who is an expert, and not a chiroprator. I can still provoke a spasm if I have my head turned for too long, like watching TV if I don't have my body facing forward with my head, and then I stop and correct it, and massage out the kinks.

Here is our discussion about myofascial release.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
This link has a lot of articles on head/neck/jaw issues and vestibular problems related to spine alignment.
https://mskneurology.com/category/jaw-head-neck/

2young460 | @2young460 | Dec 28, 2022

Hello, I know this is an old thread but I am hoping someone is still looking at it. Last May, after an upper respiratory illness, I started having what I thought were episodes of motion sickness. 8 months and $25,000 in med charges later, I am still not well and don't have a diagnosis. My "episodes" are now waves of pressure rising and lowering in my head almost constantly and sometimes for an added bonus I walk with a drunk stagger, and since everything else has been ruled out (MRI normal, CT normal, ears normal, ENG normal, not vertigo, not meniers, not aied, etc. ) they are guessing Vestibular Migraines. They started me on Topamax 2 weeks ago and no improvement yet. Can someone please give me something to go on? Any advice is appreciated. Thank you.

Colleen Young, Connect Director | @colleenyoung | Dec 28, 2022

In reply to @2young460 "Hello, I know this is an old thread but I am hoping someone is still looking..." + (show)

Welcome, @2young460. I'm confident that members @nrd1 @jenniferhunter @erin38 @uldiver @klhe to offer their experiences with vestibular migraines with you. Because you mention upper respiratory illness, I'm also going to tag @sueinmn on this discussion as she has experience with both lung conditions and vestibular issues.

dmmeyers62 | @dmmeyers62 | Feb 8, 2023

Hi I was diagnosed at Mayo for these migraines with the same symptoms. I also have peripheral neuropathy and fibromyalgia. They put me on doloxtin 60mg. I was on gabapentin but new doctor is helping me get off it because of so many side effects. It’s hard to deal with at times understand what you are going through. Dawn

chellbie70 | @chellbie70 | Feb 8, 2023

In reply to @dmmeyers62 "Hi I was diagnosed at Mayo for these migraines with the same symptoms. I also have..." + (show)

Hi Dawn,
I was put on Gabapentin 300mg as a back up medicine for Epilepsy, my question is to you, has your Physician talked about long term effects from taking it, I have been on it for 9 years, and was wondering how it has helped you? I feel sometimes it’s over powering with my pain meds I take at night, some mornings I have trouble getting up and moving almost like a hangover feeling and I do not drink, only a glass of wine at Christmas.
Sincerely
Michelle from TX

chellbie70 | @chellbie70 | Feb 8, 2023

In reply to @2young460 "Hello, I know this is an old thread but I am hoping someone is still looking..." + (show)

Hello my name is Michelle, I also have suffered migraines since 2005, my family physician put me on Rizatriptan Benzoate 10mg and it really has made a huge difference on my Migraines, before I would have to leave work and be in bed up to 2 days, I can take up to 3 between 3 hours apart, one tablet usually dose the trick and not in bed sick and in huge pain for 2 days. I sure hopes this helps you!!
Michelle