dmadorin

She is on Neurontin for the headaches, and Florinef. She has had extensive neuro workups from two different neuro groups (including a movement specialist -- Dr. Abbie Collins, who really determined nothing), including MRI's, and nothing found. We originally started down the neuro path as her symptoms all began the day after she hit her head. The full body stuff actually started just as very mild tremor, which was still very concerning to us as that was NOT normal for her. She's completely 'with it' through these episodes, no spacing out, can't prevent them, and they last around 10-20 minutes. They seem to often be triggered by feeling cold (sort of like a shiver gone crazy!). No pain with them, other than if she smacks her heel down too hard or something similar. She's very hot and sweaty and tired afterward -- total body workout! "My Parkinson's-like neurotransmitter disorder is the cause behind my myoclonus, my tremors, my dystonia, and my POTS." -- so tell me more about this, if you don't mind. How was this determined? Testing? Doctor? Thanks so much! Debbie

Does anyone else experience the full body spasms/twitching that my daughter deals with? We believe it's part of the whole POTS/dysautonomia thing, but would love to hear from others as well. Her POTS cardio has never seen this. Our concern is that they are escalating in their intensity, and we don't want her to hurt herself involuntarily, while thrashing around! Curious about others' experiences with this, and what has helped. Thanks! Debbie

Lindsay (POTS) is supposed to have a filling done next week -- how do you guys handle this type of thing? Concerned that the numbing agent may kick off her symptoms -- what have you found works best? Thanks! Debbie

L (age 14) was diagnosed with POTS based on history by a ped. neuro. at Mayo in Minn., and we recently also saw Dr. Fouad @ Cleveland Clinic, who actually did some testing and said vasovagal syncope (TTT showed POTS, but she didn't seem to want to acknowledge that.....?). Anyway, finally, someone who gets it (though they each seem to only be concerned with their little area of expertise, not the totality of symptoms and the whole person). Mayo put her on Gabapentin, which has drastically helped her daily headaches, and Fouad added Florinef which was helping, but she was to stay on it for 3 weeks and then drop back to every other day and it seems like since dropping back she's struggling again (despite the fact that Fouad agreed she could go back to every day). She is really having bad stomach issues lately, not wanting to eat or drink much as it really stirs up the nausea and stomach pain (which landed her in the ER for fluids from dehydration a week and a half ago). Ped gave us Zofran, but that's not really cutting it either, and not an ideal long-term solution. Anyone else in the same boat? What helps with the stomach stuff? I've got calls in to both facilities, but am waiting on responses for their advice (if they offer any -- GI not really their area, so I won't be surprised to hear that kind of response, but hoping for something). It's really frustrating to have these docs so far away, and docs here locally are clueless, so how do you coordinate care? Who understands autonomic issues and treats the WHOLE PERSON? Thanks for any help! Debbie

Thanks everyone. We are in Denver. I did manage to schedule an appt today for Sept. with Dr. Fouad in Cleveland, but I've also read somewhere she is really good at diagnosing, not so good at treatment. Not sure that's the route to go....the goal is to get her feeling better.

Forgot to add, we also saw a neurologist who was also a pediatric movement disorder specialist, and she was basically stumped. Eventually called it 'enhanced physiological tremor' -- and have a nice life.

This was one of my daughter's first symptoms, which have escalated over the last couple of years. At first, you could hardly notice. Unfortunately, she gets the tremor all over, arms, legs, sometimes even trunk when it's really bad. Caffeine makes them worse, as does exercise. And, the weirdest part, for the last few months if she gets cold she gets strange twitching all over, almost like convulsing. Obviously not her favorite thing! Does this ring a bell with anyone else?

We're struggling to find a good doctor with experience in dysautonomia, who will see pediatric patients, as we attempt to get our 14-yo daughter a diagnosis. We've begun the process with Mayo in Rochester, but they have an 18-month wait. Not acceptable. Has anyone used Cleveland Clinic?

Still trying to sort out my daughter's symptoms and get a diagnosis, and I'm wondering if the headaches she experiences are common with dysautonomia and/or POTS? She gets headaches daily, of various types (pressure/head going to explode, sharp pains in the back of the head/neck, and ice pick type pain above ears). The length of time they last really varies, sometimes very brief, sometimes for days, but at least some form of headache daily. The neurologist we've seen has had her try a couple of migraine meds (imitrex and amitryptyline), but they don't help. OTC stuff doesn't touch them either. They are not migraines, per neurologist, but they are trying to say that all her other symptoms are part of a 'migraine syndrome', yet she does not have migraine headaches (some 'other' type of headache....). I find this hard to swallow as she has these headaches and many other symptoms daily, and I've not heard of people having migraines daily (nor has the neurologist we saw for 2nd opinion). Do her headaches sound familiar to those on the board? If so, what has anyone found to help? She also tried Propanolol briefly, but that made her even more lightheaded/dizzy, and then the generic Topomax was horrible for her -- seemed to cut down slightly on the frequency of the headaches, but the mood/depression issues were not worth that slight decrease in frequency. She basically just lives with them, as we can't find anything to help, and is not on any treatment plan at this time. Thanks! Debbie

Thanks, but we've tried. He does not see pediatric patients, though I explained the situation, the long wait in Minnesota, etc. Nope, no exceptions. So very frustrating!

Forgot to mention fast heart rate -- example: standing in the kitchen talking with friends and it was 144. Cardiologist last week noticed it jumped up when she stood up (by about 30 beats or so) but then he dropped that issue when he said it was coming back down right away (but what would happen if she kept standing there for 5 or 10 minutes?). We are scheduled to do an exercise test with him next week, so we'll see what that shows.

Hi -- new here and looking for help. For the last couple of years my 14-year-old daughter has been dealing with some of the same types of symptoms I'm reading about here -- and we are still looking for a diagnosis/treatment plan! It all started when she hit her head on the top of the window well on her dad's truck, and the symptoms started the very next day (too coincidental for me, I think it's got to be related, but two ped. neuro groups in Denver have said no, nothing wrong neurologically, including one of the top pediatric movement disorder neuros in the country). We have confirmed (MRI) nothing structural wrong with brain, spine, or heart (recently saw a top ped cardiologist as well). Help! Who do we see for this stuff -- as a pediatric patient? We've heard about Mayo in Minnesota and their autonomic/POTS program there, but it's a 15-MONTH wait. Seriously! We realllllly don't want to wait 15 months, but we're starting the process to get on the list just to be moving forward somehow. I've also read there's a Dr. Deal in Chicago, and will probably start pursuing that, but wondering if anyone has any information about that POTS clinic. Also, it would be MUCH easier to handle here locally, obviously. Has anyone pursued an autonomic/possibly POTS diagnosis in the Denver area in the pediatric realm? Her symptoms: headaches (daily, come and go, several different spots/types, but NOT migraines, and they can't find a medicine that helps), hot/cold inappropriately, nausea, tummy pain after eating, chest pain, tremors (almost constantly when awake), weird numbness/restlessness in limbs/trunk, dizzy/lightheaded to the point of feeling like she's going to pass out but she can tell and bends down/squats down so she doesn't (only has fainted once or twice). Sound familiar? Is the autonomic/POTS area something we should continue to explore? Thanks for any help -- this has been a very frustrating journey and I definitely get the feeling the docs think we're nuts.