I have been diagnosed with Chronic Migraine with dizziness (Migrane Associated Vertigo) which is what A LOT of us here are diagnosed with as it is the diagnosis for our symptoms when the doctors can't "find" anything "wrong". I have been told that it could be hormonal in part.
DIAGNOSIS SO FAR: Chronic Migraine
HOW LONG WITH SYMPTOMS: Almost 2 years
Dizzyness/Unsteadiness: 24/7 feeling like my head is too heavy for my neck, or if I turn my head left or right, or look up and then straight ahead. Any pressure on the back of my neck causes dizziness. It feels like my head is full. i cannot get up from laying down without dizziness. If I try bend over and stand up - dizzy. If I do some stretching on the floor and try to get up, dizzy. My blood pressure is OK, if not on the high side a little.
Ear Pressure: Sometimes, and now I am particularly bad if I go to a higher elevation. I have a hard time de-pressurizing coming down out of the mountains.
Hearing Loss: No hearing loss - I went through audio and vestibular testing. I was having short boughts of high pitch squealing that lasted 30 seconds or so, but those have mostly vanished in the last month or so.
Head Pressure/Sinus Pressure: Always. Right now I feel like someone has a band around the back of my head at the base of my skull and is pressing right above my ears on either side. I also have this pressure in between my eyes and behind my eyes. Sometimes my vision is off, like I have the wrong prescription in for my contacts. Sometimes it's hard to focus and feels like my eyes are dancing.
Brain Fog: I really am having a hard time concentrating and am easily distracted.
Neck pain: My neck aches, as does my upper back. It feels like an hour long massage would help. The left side of my face sometimes feels like I am on the tail end of novacaine.
Anxiety: Of course - who wouldn't have anxiety feeling like this?
Shaking: I cannot exercise any more. Anything I do that takes any amount of muscle strain makes me shake. I cannot do a sit up/crunch, a plank, or lift a weight more than a couple of times without my muscles trembling.
Eye Pressure: (9) 24/7, constant behind eyes, dull pulsing pain, get sharp at times.
Sleep: I do not sleep well. I wake up several times a night and even if I do think I have slept well, I feel like I did not sleep at all.
Focusing problems (10) 24/7, my eyes jump around and its hard to focus on something near and then something far, eyes always want to focus on the nearest object. I call it "eye spin".
AURA Not sure I get this, but when I look at something bright and then close my eyes, I see a perfect re-creation of that object for a few seconds - such as the plantation shutters on my windows. If I look at the window and then close my eyes, I see that perfect image for a while, and I have funny spots that move around like blobs when my eyes are closed. They change shape, and are hard to explain.
After 1-1/2 years and all kinds of tests, I am told this is Migraine. Tried Verapamil, the migraine diet, Botox, acupuncture, steroids, etc. Now I am on natural hormone replacement therapy. Nothing is working.
Right am on my second short course of Dexamethasone and feel like my head is going to explode. It makes me dizzy.
My doctors are with the Mayo Clinic, so I am supposed to be getting the best care, but I am starting to wonder. Was something missed?
I had 2 brain MRIs, and than another with contrast to check my veins and arteries in my head and neck. I had a CT scan of my sinuses, a cervical MRI (that was the first one), vestibular testing, audiology testing, blood work (which showed my hormones were in the toilet), been cleared of MS, and have seen three neurologists, an ENT, primary care doc., etc. Been to physical therapy and am still doing acupuncture since it's covered by my insurance and its cheap.
The ONLY thing I haven't done yet is to be checked for TMJ. I did talk to a specialist but they are out of network and I don't have the $500 out of pocket money to spend being examined.
All I know is NOTHING is helping with this pressure and these headaches. How can none of this medication work?
Is there anyone out there like me that has actually found the problem and gotten relief?
I've been to the mayo clinic in AZ and they're useless! I suffer from chronic Migraine and take several medications. I have TMJ it is a contributer but not the whole reason. Recently i had a STAND UP MRI , and they actually finally after 15 years found something. 7 buldging discs in my cervical spine! ! ! !
the lay down one didn't find them. These are the reason for my pain.
I think its' something they haven't found yet, and go to another place because Mayo clinic SUCKS. I was there I know!! ! ! ! !
Get a STAND UP MRI which finds things the others don't. Get on some ELAVIL and GABAPENTIN. Use Imitrex. I need it everyday. that's just how it is. talk to me I'm here!
Fire the Mayo clinic!
Last edited by moderator2; 12-30-2012 at 09:31 AM.
The following user gives a hug of support to LianneMarie: Kevindc (01-04-2013)
The Following User Says Thank You to LianneMarie For This Useful Post: Kevindc (01-04-2013)
Have they done a hallpike and epley on you ? ( your eyes dance around ) ? you mean jerk around ? If so that could mean you have particles in your canals (in one or both ears ) ? I had the dizzy stuff bending over (when stuff was in my canals).
LianneMarie thanks a lot for STAND UP MRI. I never knew about that kind. I am in the same boat since January 2010. Chronic Migraine, 2 spikes, one in my back and one on my neck and plexopathy. Only yoga helps but sometimes I can not practice because of severe pain. I wish you all luck.
Please look into the sternocleidomastoid muscle in the front of the neck that runs from your collarbone to behind your ear. This muscle when restricted/tight and under spasm can cause severe dizziness and intense head pressure along with ear congestion/pain. Look into myofacial release. You have muscles in your neck that are spasming and referring pain into your head. Most head pain is referred pain from the neck muscles. Get an MRI immediately and also check to see if you have any bulding discs as one other poster mentioned and also see if you have the correct curvature in your spine. A straightened c spine indicates muscle spasms in neck. Try a muscle rub such as biofreeze to loosen up your neck muscles and get into a physical therapy regimine right away to release the neck muscles and straighten out your alignment.