New here - question about spasms

I’m new to this site and had a couple of questions that I was hoping rang some bells with somebody. My 20-year-old daughter has been having some very severe issues with muscle, tendon, blood vessel spasms, as well as nerve pain. I found an old thread from 2012, I think, and some of the people were describing the same thing, but my daughter’s is very severe. It all started with twitching and tremors and has escalated to horrible muscle spasms that will freeze her in a dystonic contracture that only an ER visit will undo. It has now added not only muscle spasms, but blood vessel spasms that either create a Reynaud’s effect or an erythromelalgia (Man on Fire disease) effect. The initial twitching and spasms weren’t horribly painful to start, but it quickly graduated to a 20 out of 10! The the spasms affect the nerves, which is one of the most painful aspects of all of this, as well as the bone pain that seems to accompany it also. The muscle spasms also affect her abdomen, as well as her internal organs (stomach, bladder, intestines). This also usually happens only at rest, although the residual of all the pain certainly carries over to the next day. It has been going on since June and has been getting worse. My daughter also complains that it all starts at a certain point in her neck. Early on, when her chiro would gently pull on her neck, the tremors would stop. It was the weirdest thing. Also, when this all first started with the tremors, we would put a warm rice sock on her neck and that would stop the tremors in her arms and legs.

A little background on my daughter, she has Ehler’s Danlos Syndrome, Dysautonomia, POTS, and had a tethered spinal cord (untethered at age 3-1/2). She also deals with chronic vertigo, had a lumbar puncture recently because there was thought to be a pseudotumor cerebri. Had bad headaches, visual disturbances as well as swelling of the optic nerves in both eyes and blurring of both optic discs. I am in the process of getting her in to have an upright MRI done, but it’s a slow process. Does this sound like Chiari to anyone?

Only thing I can say is to be 100% sure is to tell the doctor to get an MRI done on the brain and head. But from what I understand some with Chiairi also has ehlers Danlos syndrome but I’m unsure if they are related or just coincidence. Wishing you and your daughter all the best.


Thanks so much for the reply! I will definitely make sure that they get both the whole brain/head and I want them to get the cervical area of her neck, too. Thank you so much for letting me know. Neuro things are so hard, as many symptoms mimic other things, so how do you know what’s causing what? Age old question, I guess. Yes, there is a very high incidence of Chiari and EDS. They just seem to go together.

I have Ehlers Danlos and Chiari. Because of the connective tissue issues people with EDS have a high risk of also having Chiari. The opposite is not true. If you have Chiari, it doesn’t put you at a higher risk for EDS.

I use vitamins and herbs Magnesium and vit. B complex has helped get rid of sever head pain and muscle spasms. It helps repair the nerves the Drs. meds.
just irritated mine and made things worse.

Lora just a quick question how much of the magnesium and vit b do you take? And which vit b do you take because I know there different ones?!!!

Thanks for the suggestions! She does take Magnesium - 800 mgs a day! Probably not recommended for everybody, but her body handles it. She also takes a B complex vitamin, but no help with the muscles. Still taking both of these things, though, don’t know but it could be worse if she didn’t. She also takes about 8,000 mgs of D3 a day. Very good for you. Her readings were venturing on the low side when we were only taking 4,000 a day.

B complex I usually go to the herb and vit. store and look them over to see which one best fits for me.Same for magnesium, the magnesium that I am taking presently has potassium in it to.I have tried all kinds of meds. for headaches and they didn’t work my old neurologist started giving people my cocktail to try and help them. I quite going till now I think I have developed a syrnix.