DizzyGirls Posted June 30, 2016 Report Share Posted June 30, 2016 My poor daughter is just going through it. Last Friday she developed involuntary muscle spasms that started with her shoulder, then worked down her arm into her hand. It flip flopped, fingers moved uncontrollably like playing "air piano", it moved into her other arm, starting in the upper part, then working down to her hands. Her hands flip flopped, fingers moved, etc. It then moved to her legs, one and then the other. Finally, it crept up to her face. She's been working really hard to keep her head still lately as her vertigo has been bad, so this was not good. It lasted for about 20 minutes until the phenergan I had just given her right before all this started (hadn't had time to work to cause this) kicked in. I also had put ice packs behind her neck, shoulders, under her knees, etc. It seemed to calm them. The reason I chose ice was that she has had an issue with her neck and some severe inflammation and thought it would help bring it down. This was very late, so she finally was able to go to bed and slept all night. She woke up the next morning and was still a little jittery and very, very sore. I texted her primary doctor and he called right away. He thought it was a mix of the phenergan with one of her other meds. So he told her to take Benedryl. Worked pretty good, kept an eye (via phone calls) all day Saturday. By Sunday morning when I called to check in, she had begun spasming again. He said that wouldn't be the meds because she hadn't taken anything. I told him that there was an area in her neck that she could feel which nerve was triggering everything. Why it wasn't isolated to just that nerve, I don't know. But we had a neck x-ray taken yesterday, an appt. with her chiropractor (she's extremely knowledgeable), and her primary doctor on Friday. Anybody ever had this happen? Thoughts? Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted June 30, 2016 Report Share Posted June 30, 2016 Oh no! I'm sorry that this has started occurring. I don't have much to add - just wanted to let you know I'll be thinking of you guys - and also, maybe a visit to her neurologist might be something to consider. There is a Nerve Conduction test, Electromyogram (EMG) that measures muscle activity at rest and during contraction. Might be helpful if the x-ray doesn't show anything. EMGs test for inflammation of muscles, pinched nerves, causes of twitching and weakness. I had this done about 8 years ago because of weakness. Wishing you all the best! Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 30, 2016 Report Share Posted June 30, 2016 If you go on YouTube and search for POTS spasms or something similar, there are videos of POTS patients who experience spasms in their body some of which are quite severe. I don't really have any info on them and I watched them so many years ago I don't know if there is information in the videos but it's worth a try. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 30, 2016 Report Share Posted June 30, 2016 I also had involuntary movements when my POTS was severe. I remember that it was very scary. It was before I was diagnosed and I thought I might have something more severe than what I turned out to have. Specifically I had large tremors in my neck that would make my head nod/move at times, and I also had arm and leg movement during episodes. Every other cause was ruled out eventually and it seems it was due to severe POTS in my case. When my POTS symptoms resolved this was one of the first things to go away. However, my POTS specialist was insistent that this was not caused by POTS. He was very dismissive which was upsetting to me at the time. I think there are some things about this condition still quite poorly understood. That said it probably would be important to rule out other medical causes in your daughter's case including medicine interactions, etc. Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 1, 2016 Report Share Posted July 1, 2016 (edited) MomtoGiuliana ' s post reminded me....(sad that I wouldn't have remembered this all by myself ) I have developed fine tremors in my hands mostly, although occasionally in my lips and arms. They definitely fluctuate with the severity of my POTS symptoms. Some days I don't noticeably have them, while they can be quite obvious when I am having a bad day, up to and including not being able to hold utensils safely or being able to hold a cup to my mouth unless I use 2 hands. I have sent spoon fulls of food flying across the kitchen. I realize it's not quite the same thing you are describing but it is somewhat similar. I pass all neuro exams and it has been attributed to my POTS. Edited July 1, 2016 by Katybug Quote Link to comment Share on other sites More sharing options...
issie Posted July 1, 2016 Report Share Posted July 1, 2016 I have tremors too. I'm starting to think mast cell reactions are contributing. Maybe not completely, but a part of it. If the Benadryl helped - could be that connection. Issie Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 1, 2016 Author Report Share Posted July 1, 2016 Thank you all! My daughter does have mast cell issues, tests always come back high, even on antihistamines. Could be why her body likes Benadryl so much! My daughter told me (as we've had many discussions lately) that she had a lot of weakness in one of her arms before we left to drive down to our appointment at Stanford last November. It was a long drive for her, 3 hours, especially since her vertigo had been bad (as always happens when she is stressed). She also had it recently when she was especially bad a couple of weeks ago and thought she wouldn't be able to make an appearance at a graduation party for a friend. She did make it to that, but, looking back, not sure it was the smartest idea to go. Took a lot of medication to get there and it really set her back. Her vertigo has been extremely bad the last few weeks and it's on the heels of that, that the tremors began. Think it's looking more and more like this may be POTS related after all. Interestingly enough, when we went to the chiropractor yesterday, her hands and legs did start trembling so she could see what was going on. The chiro pushed gently on a particular spot in the thoracic area of her back and her hand stopped shaking. Just like that! Her leg started trembling, so she very gently pulled on her head to stretch her spine and it stopped moving. She put my daughter back together and it was better last night. Not sure what we'd do without our chiropractor. She's been amazing through all of this! I've also been in contact with her neurologist from Stanford and they are ordering a cortisol test and a thyroid test for her, too. Will have to get that done next week, due to the holiday. Thank you all! You've made me relax a little. Have a happy 4th of July!! Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 1, 2016 Report Share Posted July 1, 2016 Has she been evaluated for C-spine instability by a really knowledgeable EDS specialist or neurosurgeon familiar with EDS patients? If the chiropractic adjustments made that sort of difference, it may be something to check out. Spinal instability, especially in the cervical spine, is very common in EDS patients. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 2, 2016 Author Report Share Posted July 2, 2016 Katybug, Thank you! We just got back from visiting our PCP. What a waste of time! He had managed to get us through the weekend with the muscle spasms and all that, but when it comes to EDS/Dysautonomia/POTS he hasn't got a clue. He just sees all the meds. I will definitely look up cervical instability. I do know that you had suggested somewhere in one of my posts (I think it was you?) about cervical vertigo. It would make sense. Her chiropractor said that in looking at her xrays, at the top of her spine she could see a tendon/ligament (get them confused) that appeared to be very thick. It would be holding that part of her skull too still, while the other vertebrae were too loose. When my daughter was 3, she had spinal cord surgery for tethered spinal cord. The surgeon said that the filum was one of the thickest ones he had ever undone. Would say that the thick tendon/ligament that the chiro saw would go along with the thickened filum. We have been back in touch with Stanford, who, for the west coast anyway, has the only doctor who has any conception of EDS, Dr. Jaradeh. They are hard to follow-up with, but discovered that they do phone appointments. Think this will be our best option for now. Do you know that our PCP was even balking as to why we were asking for a cortisol test? Just write out the stupid form, will ya! You know, as soon as I started this thread, my daughter DMd her friend in the UK and asked her about it. She said, 'oh yeah, this can definitely be part of POTS'. A 16-year-old girl. If only these doctors knew what these kids and all of you know.... Quote Link to comment Share on other sites More sharing options...
yogini Posted July 2, 2016 Report Share Posted July 2, 2016 If your daughter has been diagnosed with vertigo,has potential mast cell and is taking medications, it could be one of several causes. It could be POTS, it could be something else. I've had POTS related spasms and mine don't sound like what you are describing. Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 2, 2016 Report Share Posted July 2, 2016 I didn't know about the tethered cord. That's a big EDS complication too and often comes along with people with spinal instability. And while we're talking about it, this is all making me wonder about chiari malformation as well. So, one big question would be, can you get a doc to give you a script for an UPRIGHT MRI with views in flexion and extension of the neck, not a regular mri. (They have to specify that they want regular, flexion, and extension views.) It's the gold standard for diagnosing cspine instability and chiari. Many docs will say it doesn't give significantly more info. My mri looked completely different from my upright mri. And it makes sense because gravity and the weight of your head and body completely change the posture of the spine when you are upright. Have you joined the forum at www.ednf.org? They do not have a published physician list on their site but they are pretty organized behind the scenes and have people that run support groups and maintain physician lists by area of the country and also for other countries as they are international also. If you get on their forum and ask for doctor referrals in your area, they are good at getting information to you. You might find someone who can help more with this issue. If that fails, you might ask Dr. Jaradeh if he will consult with Dr. Clair Francomano (geneticist, Baltimore, MD) or Dr. Fraser Henderson (neurosurgeon, Greenbelt, MD or Chevy Chase, MD). They both specialize in treating EDS patients and are sought after internationally for their expertise. Of course, that's all if you feel like you need more than you are getting from this doc. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 2, 2016 Author Report Share Posted July 2, 2016 Thanks Katybug, sounds like I have a lot of research to do! I know that I've been on the Inspire forum, I think that is the one associated with EDNF. If it's not, the forum administrator is from EDNF. She mentions Dr. Francomano a lot as well as Dr. Henderson. I looked into an upright MRI for her once, but was having trouble with the insurance wanting to okay it. We have kind of restrictive insurance, so we can't go everywhere. Would imagine those cost a lot, too. I'll look into it again. Could be that our chiropractor could write an order for one. There's a thought. I'll pop on over to the EDNF forum and see what I can find! One more question....have you ever heard of anyone having any success with something called prolotherapy? Just curious.... Yogini - thank you for your comments. Yes, my daughter has a lot going on. It's been really difficult to narrow down what is causing what. I do know one thing, though, somebody has got to figure some part of this out to give her some relief. Going to have cortisol and thyroid test run next week. Am guessing the cortisol will come out high, but maybe not. Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 2, 2016 Report Share Posted July 2, 2016 Yes, the Inspire forum is the one associated with EDNF. I have heard of prolotherapy but don't know much about it. I actually heard of it on the Inspire forum. If you do a search on there, you should find some info/feedback on it. Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted July 3, 2016 Report Share Posted July 3, 2016 Katybug I am glad you brought up Chiari because as soon as I read about the tethered spinal cord I was going to bring it up as something to be ruled out. with that said, Chiros can be great but until Chiari is ruled out I would be very very cautious about any neck adjustments or alignments. I have a small Chiari (herniation of the cerebellum tonsils into the foramen magnum) so have done quite a bit of research on this. Chiro adjustments are contraindicated for Chiari as they can increase the herniation. Manual neck traction in my case is fine and can help with cervical dizziness however. It has helped me. Good luck! Y'all sure need to catch a break! sending hugs ? Kaitlyn Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 5, 2016 Author Report Share Posted July 5, 2016 Hi Kaitlyn - thanks for the hugs!! When we were at Stanford, the doctor looked at her MRI and ruled out Chiari. That being said, the MRI was not an upright one and, from what I've read, Katybug is right and that it needs to be an upright. There is one about an hour or so away from us, but not sure about the insurance. That's always a challenge. My daughter made it through the weekend, barely. Her pulse is still high, around 120's. I can tell her adrenaline is still pumping. She'll probably crash tomorrow. Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted July 6, 2016 Report Share Posted July 6, 2016 it makes sense that upright would show the extent of the herniation better. Terrible to have to worry about insurance issues besides. Good Luck to you all, I hope you get some relief soon - I will keep you in my thoughts! kaitlyn Quote Link to comment Share on other sites More sharing options...
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