Anyone familiar with this type of migraine? I feel so alone.

Thanks but I have the results. My last one was in August. They're all clear. I've had 2 MRI, 1 CT, and 1 MRI of entire spine. 

I agree with you about being our own advocates. I really am mine, that's for sure! 

Too young to have so many issues. Stress can make us ill and worse. Hope you have many ways to find your center and meditate to relax. 

Oh your gonna laugh. I have a migraine helmet that is designed to help migraines. I got it for x-mas last year. It really works. Has calm cooling light and pressure message, soft music and blocks out all the outside noses. It sound crazy but can helps a lot. See on line for more info. 

Gabapentin gives me a migraine it makes it worse. That's just my reaction. I seem to be sensitive to many medications. 

Hopexxxx😊

Maybe you should patent those! Lol I didn't know they existed. I'll look online.

I haven't tried it yet because I'm sensitive to them too! Ugh

Thanks for all of the advice!

They actually do have PMs! I'll message you

Oh wow thank you! It honestly hurts to turn my head to the left its so sore on the back of my neck. That seems to be where that nerve low. I asked about occipital neuralgia but she told me no. Im constantly using heat and rubbing my neck and shoulders trying to loosen whatever is going on. It makes my jaw tight and everything! If I push in a few spots back there, all the tension goes away and it's like instant relief. 

Thats crazy your MRI missed it! I was told by a physical therapist tho that x-rays only pick up stuff out of alignment like that. I'm glad you figured it out! I'm definitely going to keep it in mind. I feel like my neuro thinks I'm crazy at this point. Bless the doctor that was smart enough to do that x-Ray on you! 

I believe the MRI is more soft tissue focused. The MRI and x-ray of my head may not have included right at the base of my skull as it attaches to the Neck, where the C1-C5 vertebrae, the C5 then connects to the spinal vertebrae.  I too had limited mobility in my neck.  My PT measured that when I turned my neck to the right, I could only turn it 10 degrees, normally it should be 45-55 degrees.  When I turned my neck to the left, I was 25 degrees.  My c1/c2 got out of alignment from my overall poor posture - working on a computer, phone, and was compounded by my soft saggy bed.  My neck overnight just snapped out of alignment.  I woke up that morning with bad neck and shoulder pain and a headache.  I got to moving around, getting on with my day, took the dogs for a walk.  After grocery shopping, I loaded my bags into the car - and I felt really weird, and had a hemiplegic migraine and landed in the ER.  Your mention of the jaw tight is a classic symptom of neck issues, along with a long laundry list of others.  I was just at my neck dr, for a follow up and while I did not have jaw issues, he was telling me what he listens to from his patients, and he mentioned this along with others, lets him know it more in the neck than the spine.  Those spots you mention are those nerves and muslces that can sit on the migraine and headache paths.  My neurologist (high-regarded) could not see past this be neurological (brain), but once I got to a neck/spine dr., he mentioned his neck patients are migraine and headache sufferers.  You can either cause a headache by pushing on those, or in your case, find relief.  I had a bit of both given the hour or day of how I was feeling b/4 my neck was corrected.  I'm wondering if you may (also) have an impignment somewhere along the c1-c5.  Heat and massage therapy were my saviors once my neck was correct - granted, my PT and massage therapist had to be very careful as again the wrong amount of pressue and they could trigger a headache/migraine, but needed to calm and rest everything down and back to normal.  Today my PT continues to lenghten stretch my neck from any compressions and does massage trigger to calm everything down.  are you posssibly in the US?   I'm in Illinois

I'm in Pennsylvania, actually. What tests do you recommend I should have that you did as well? The x-ray with mouth open?

I know you're not a doctor but I appreciate your advice and it's worth a try at this point!

Like even right now, my jaw is so tight that it gets hard to speak. I was told a few years ago by my dentist that I grind my teeth but I haven't noticed me doing it lately so I don't think that's it. And I have Ménière's disease which is an inner ear disease so I sit with my head cocked to the left a lot. I do it out of habit because of the vertigo it gives me. I know that can't be good for it.

In general, I wake up with a headache in the morning at least 3-4 days a week from my neck/base of my skull hurting. So I'm willing to give things a try. I'm quite sick of them.

Hi, good to hear you that you are in PA - as you can at least get to a big city hospital if/as needed. It may be worth also following up with a dr,. as Temporomandibular joint (TMJ) could be the jaw issue if they find your neck is okay/aligned.  Given the muscle-sketetal issues in the neck/base of your skull coupled with the Ménière's disease, you may find best help and diagnosis with a neck/spine (non-operative) orthopedist. A good one can literally place their hands on the jaw, back of the skull and neck and feel around.  Mine saw right away my issue.  As for the x-ray b/c I was in so much pain and didn't want to wait my appt. to roll around, I found an Urgent Care - the good ones that are affiliated with a hospital.  I called up and ask if they performed x-rays and had a Radiogist who could read it.  In my appt, I complained of my neck/base of skull pain, and that I had limited mobility and it was crunchy when I turned.  He order the radiologist to do 4-8 x-rays.  I stood and held 7lb bags of sand in each hand down at my sides.  they took a neck x-ray looking for the c1-c5 vertebrae separation, from front, side and back of neck.  The bag were then removed and repeated the x-rays and then 1 from a front view with my mouth open.  The radiolgst and dr conferred and they read me the results, gave me a copy and I shared this with my neck dr.  He was also able to feel my neck and literally see the cocked head/neck while we talked.  Best wishes and I hope for you a resolution.  On another note, for the Ménière's disease - have you ever done Physical Therapy for it?  They may be able to help with your balance - and give you tips and tricks for mitigating the effects of vertigo.  I learn a ton with my PT, aside from the stretching, neck streghthing, etc. he helped me with balance, concentration, focus, and staving off tension headaches, deep breathing methods.  I used ever one of those techiniques while I was going through the difficult time during my neck correction, massage theraphy (painful). Now things are turning back to normal for me I do not need them as much, but use them when I need.

I asked my dentist about TMJ and all he said was there's nothing they can do for it. So I was like "okay then? Thanks for all the help" (sarcasm lol).

Actually, in doing my vestibular exercises I have to turn my head back and forth. I, too, hear a crunching noise when I turn my neck. It's when I turn my neck to the left and I've told my PT about it but it was disregarded. I'm sure she didn't do it to be mean but because it probably doesn't seem like a big deal.

I've never heard of the bags of sand, that's actually really clever. I already feel like my shoulders are bags of sand as they feel weighed down all the time.

Thank you so much for all of your help, I really do appreciate it. I'll talk to my PT but she's pretty young so I'm not sure what advice she'll be able to offer me but it's worth a shot.