Connect
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for the last two years have been: popping ears, nausea, vertigo at the beginning which seems to have gone away and been replaced by dizziness and light headedness, tingling all over head, severe headaches, weakness to almost numbness in my arms, and severe fatigue.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?
Like
Helpful
HugInterested in more discussions like this? Go to the Brain & Nervous System Support Group.
Connect
What doctors have you seen? I know how frustrating it is! Trust me.
@jenniferhunter -I have seen 2 neurons headache clinic at a University.
Spinal Surgeon at a University.
Physiatrist
Chiros. Massage therapy
Issue is. I was believe I was misdiagnosed when I was complaining of ear fullness. ENT diagnosed me with sinus issues, causing me more harm with that diagnosis. So I have now lost faith in Western Medicine, because I am now dealing with iatrogenic issues along with the minor head issues I was dealing with. So it’s now complex to pinpoint.
@erin38-sorry I didn’t see your other post before I responded. Thank you for the advice. I will try that.
I have been to many doctors. I had something very minor for a few weeks. Saw an ENT, who only wanted to operate.
I was told by the neuro, that I probably had cervicogenic headache prior. But post sinus surgery, triggered more head issues/pain.
I’ve tried many different physical modalities.
My head feels like it’s chronic tension. But I don’t believe tension migraine causes vertigo. Perhaps if muscles in neck are very tight. The occipital muscle spindles are very powerful. It’s so hard to pinpoint.
@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/
Thank you. I appreciate it. Can you tell me if when you had these headaches you experience a scalp tightness? Almost like nothing is aligning right when you lift eyebrows, and scalp?
I've felt tingling on my scalp and in my right ear. Nothing with tightness of eyebrows or anything like that. Have you had a brain MRI?
I completely understand. I think people get misdiagnosed ALL the time. I don't have a lot of confidence or faith in some doctors either. I have seen some thorough doctors and some lazy ones who don't want to investigate or take the time and patience to figure it all out. There are good doctors out there BUT hard to find.
Don't give up. Keep searching for answers. You will get them but may take some time. There's someone out there who will help you. Please also know that there are TONS of us out there also searching for help and answers. You are not alone.
Thank you. The only reason why I ended up here on this forum, is due to Western Medicine error. They disrupted my whole body system function. So I look to others now who may have insight. Before western medicine doctors convinced me I had a problem, that I didn’t have, I truly knew the body. All bodies have innate wisdom to heal if given the right treatment modalities, by the self first. I normally would be able to get myself out of this. But the innate wisdom has been disrupted by doctors. This might be too deep for some, but it’s the truth. I’m now left with having to go to people for something I never would have developed on my own, so I have no way to describe it or have it understood. Once doctors get involved they make it more complex than it needs to be. I appreciate your advice.
@erin38-I have had brain MRI. I first experienced tingling on scalp and a sense of “fullness” in right ear.
I now have complete and full tightness through entire scalp forehead face down to Occiptial area. I pull and tug on my scalp all day for relief. Lifting my eyebrows cause a restriction into the back of my scalp. Can’t look down or read for lengthy periods of time. Now have sound sensitivity due to the guarding and tightness.