Vestibular migraine: What symptoms do you experience?
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for the last two years have been: popping ears, nausea, vertigo at the beginning which seems to have gone away and been replaced by dizziness and light headedness, tingling all over head, severe headaches, weakness to almost numbness in my arms, and severe fatigue.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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I truly appreciate all your insight and advice Jennifer. Happy Holidays to you!
@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.
@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.
@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.
@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.
This link has a lot of articles on head/neck/jaw issues and vestibular problems related to spine alignment.
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.
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.
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
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.
Michelle from TX
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!!