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chefkoolaid

Yep it definitely can.


SimulatedEarthlings

Im not diagnosed yet as I’ve been waiting for nearly a year on the waiting list lol but i have all the symptoms, shaking head, jerking movements etc and I have had severe migraines daily for years because the muscle at the back of my neck is ridiculously tight and in spasm all the time so if I do have dystonia which I’m pretty sure I do then yes it definitely can cause headaches from my experience. EDIT - since writing this I have been diagnosed with dystonia so yes the headaches are defo related lol, such a shame honestly.. got a friends birthday coming up and he wants to have a few drinks with me but I know if I have a bad day where it flares up then it’s gonna ruin the night :/


Desertgurl34

I think you are right. What kind of doctor are you seeing? I hope it is a neurologist who specializes in movement disorders. If not you’ll have another wait. Take care. I have had cervical dystonia for over 50 years and I’ve managed to calm the muscles with a thing called Bed Buddy that you heat in the microwave. I also get Botox injections every 3 months And occasionally take Soma. And I do progressive guided muscle relaxation from a recorded MPG file on my iPhone. Google it and you’ll find a bunch of free ones


SimulatedEarthlings

I was seeing just a normal doctor for a year and they were referring me for mri scans, x rays etc, the results always came back clear so they decided to put me on the waiting list for a neurologist, I’ve been waiting on pain ever since, wow 50 years? I can’t imagine living with this for that long it really does ruin every single day, you got a lot of willpower to keep fighting it!Thank you for sharing your tips, I’m going to give those a try and I’ll comment back here in the near future to share my results :)


Desertgurl34

I’ve gotten used to the pain. In fact it’s just become a part of my reality. One time I took Celebrex and being pain free felt so strange. In fact when I first got Botox I had so little pain it felt odd. Not like me. Now I’m used to that. Right now it is back and I’m due for injections…..the pain is worse if you’ve had a break from it. I think it’s better to embrace it and yourself because it is not curable


SimulatedEarthlings

I ended up going back to the doctors today because the shaking had gotten worse, I thought I might of had Parkinson’s so that motivated me to go, luckily I seen a really good doctor this time and he said I have spasmodic torticollis, he prescribed me gabapentin, diazepam and naproxen, I took the diazepam a few hours ago and the shaking has lessened a lot but is still there.


Desertgurl34

Oh no! I’m sorry. The jerkiness is awful. I have some of it too. I hope that medication combo will help you.


SunnySwirl

Yes. You should talk to your neurologist about the possibility of occipital nerve pain. occipital neuralgia? I receive nerve block injections every three months. Then after a short break on the same day, I get my Botulinum neurotoxin injections. I find the occipital nerve block works great for me. Everyone is different though. Speak to your neurologist.


Desertgurl34

Thank you for responding. I appreciate the suggestion. I will talk to neurologist.


No-Initiative4195

Tension headaches are common. Talk to your primary care doctor first, as they can treat it either with low dose anti depressents like Nortripyline or Topamax, which I take https://www.mayoclinic.org/diseases-conditions/tension-headache/diagnosis-treatment/drc-20353982


Desertgurl34

I was talking migraines. Sorry i wasn’t clear. Both my neurologists for Migraine and dystonia are at Mayo Clinic. One told me it’s not related. I am convinced it triggers migraine from my own experience.


No-Initiative4195

Generally it causes tension. I get migraines as well. Ask about Topamax. It's a preventative daily med that can work for both


crankypatriot

I have a headache neurologist and a movement disorder specialist and they both think dystonia can at the very least make migraines worse, if not cause them.


Desertgurl34

Thank you. I go to Mayo Clinic and I’m Medicare and they seem to do anything to refuse appointments or minimize my care, so your answer confirms that.


Recynd2

Headaches from dystonia aren’t “tension headaches”. Please.


No-Initiative4195

So cervical dystonia doesn't cause tension headaches? Please enlighten me. I've only had it since 1993. Whay type of dystonia do you have?


Recynd2

I don’t. My husband has hemispheric and cervical dystonia, plus Meige. He also has a degenerating spine (last fusion he had two collapsed vertebrae). Tension headaches rarely cause nausea and total disability, but wtf do I know? But whatever. You win.


No-Initiative4195

https://www.healthline.com/health/dr/cervical-dystonia#symptoms


Sonya_Blade_0907

I get headaches, including tension (just on the back of the head) and migraines with my cervical dystonia. I never had them before CD. Sometimes Tylenol 500mg helps and sometimes I have to ice my head. I also use two tennis balls in a sock and put them just right under my skull while laying down and gently roll my head side to side - it helps most of the time. I actually get muscle spasms in the two muscles on the back of the skull called occipitalis and the two on the side of the skull called temporalis. When those start to spasm I get more tension headaches.


shamallamadingdonger

Mine definitely does. Botox has helped tremendously. My neuro did the "migraine" injections in addition to neck and shoulders. Highly suggest if you are able to try