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About DizzyGirls

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  1. Dysautonomia and Dystonia

    Thank you both for your words of wisdom! When he diagnosed her with dystonia, I thought, great! A diagnosis! Then I thought, wait a minute, dystonia is a symptom. What's causing it?? So going on the fact he mentioned dysautonomia, we will start there. I asked her if she wanted to try one of the clonazepam that he prescribed. She said, "nope, I've got energy today and things to do!" It wasn't a lot, but she had some plants that needed tending and was going to help me clean out our back room. Even though she has trouble getting around, she doesn't let it stop her. I don't blame her. I just want to make sure that it doesn't get worse if we aren't treating it. She can manage around the house, it's not always pretty, but when she's bad she can just stay put. Just would like to know what part of the dysautonomia is triggering it and how to make it better. Hers is generalized, the legs, pelvis/trunk are the worst.
  2. EDS test/diagnosis questions

    We saw a geneticist at first, but he never committed to anything, only a possibility. After that we saw a neurologist at Stanford's Autonomic Clinic and he had no reservation about telling us that both girls have EDS type III. From what I've seen in my own family, POTS will be a lifelong issue, as EDS is not going to go away. Their POTS symptoms started in their teens and the EDS symptoms started, well, at birth. It's just gotten a lot worse the last couple of years for both girls. They are 19 and 21. I hope this helps!
  3. My daughter was just diagnosed with dystonia on Monday. She has Ehlers Danlos Syndrome along with her Dysautonomia. The neurologist didn't give us an in-depth explanation about why the dystonia, but he believes it mostly likely has to do with her dysautonomia. Another doctor that we see had said that she believes my daughter's Sympathetic Nervous System is a little "lazy" and only works when it absolutely has to. Thus why my daughter's dystonia is worse inside, than outside. Being outside, the body has to be alert and aware of it's surroundings, so her Sympathetic kicks into gear, but (for my lack of being able to explain this any better) inside the house it doesn't seem to be too worried. I know this is odd. Does anybody have Autonomic related dystonia? And, what are you using to treat it?
  4. Tachycardia

    My daughter's highest was 156, but I know that many here have had it much higher. She takes propranolol now and it is so much better.
  5. To those with craniocervical instability

    It's been 6 months since her surgery. We were told ahead of time that it would be a "monster" surgery with a "brutal" recovery. It has not disappointed. She ended up having C3-T4 fused. They went in through the front (anterior) to reconstruct the curve of her neck and fused C3-T1, they flipped her over (said it took an hour just to do that!) and went in through the back of her neck (posterior) and fused C3-T4. Bone grafts, titanium rods, plates, screws. She did have two neurosurgeons and their prospective teams as well as a hand picked anesthesia team because of her POTS. You should make sure they are really up to speed on POTS. She was in the hospital for 10 days and then acute rehab for another 7. It's been rough. She did well for a while. But, the last several months things have been getting worse again. A lot of muscle spasms. The knots at the base of her skull are causing migraines and really intense skull cracking headaches, and her muscles on the upper back and shoulders are really giving her fits. She had in-home PT for about 8 weeks after and did really well, then the PT got transferred and he said that there wasn't really much else for her to do at home. She needed to go to an outpatient PT. The problem was, one of her neurosurgeons was being really conservative in getting her out to PT and waited too long. Her muscles have all tightened up and are like ropes. Her upper back is very heavy now and solid from being fused. Takes a lot of strength to carry it. The pain from this is beyond what we ever expected at this point. We did find out from a spine site that after 3 months, there can be an upswing in pain. That was definitely the case for her. So, with PT, without PT, whose to know if it would have still ended up this way. Her younger sister has EDS, dysautonomia, and was just diagnosed with dystonia. We are thinking the older one has it as well. Hers follows the description of people with EDS and dystonia. Just read a really interesting paper on it. Anyway, I hope I didn't scare you. I just want you to go into it with all the cards on the table. Her POTS has not changed, however, from the surgery. Many of the neurological symptoms did, but some are starting to creep back. I don't want you to think your POTS is going to magically get better with this surgery. It will most likely get worse for a while because of the stress on your body. One of my daughter's neurosurgeons is from peds and he is especially aware of POTS, so he kept hers under control really well after the surgery. More than I can say for the PTs, but that's another story...... Good luck to you and if you have any more questions, please don't hesitate to ask!
  6. Purplish Legs

    Just a thought on putting on compression stockings. This only works if they are the "toeless" kind, but after my daughter's spinal fusion surgery this summer, they taught her an easy way to put the stockings on. Take a plastic bag and put it over your foot, scrunch up the stockings, and slide on over the bags. Pull the stocking legs up from the toes to get the bags off your feet! Suppose you could leave them, but that would be a little sweaty!
  7. Purple blotchy legs

    My daughter's skin does this, too. Her doctor called it livedo reticularis. Looks like the same thing.
  8. Benzodiazepines

    She's been on valium about 2-1/2 years, before that she was taking lorazepam. Right now here valium dose is about 27 mg. She is coming down from 35. We are slowly breaking the tablets up and needing less. Don't know how low we'll be able to go.
  9. JB246, welcome to the forum, and well said.
  10. Benzodiazepines

    Like WinterSown, my daughter takes the diazepam for her vertigo. How low we can go all depends on her vertigo. It's a very scary thing to go off of the one thing that made all the difference in the world as far as her vertigo. But we will very slowly keep plugging along. My daughter has MCAS as well, and when her vertigo is bad, sometimes she will take an extra Benedryl instead of increasing her diazepam. With MCAS, we find that her body really likes the extra antihistamines. Helps to keep it calm. She had an upperGI endoscopy where they also did some motility testing while they were there. The second medicine that they used to stimulate her small intestines gave her a bad reaction. Face got all blotchy, throat was starting to swell... nurse ran and got some Benedryl and shot it through her IV. In about a minute, all was well again. Kind of scary, though.
  11. Benzodiazepines

    Tapering my oldest daughter off of diazepam. Going super slow. Right now POTS symptoms aren't being affected by it.
  12. I think you are right about the fact that alcohol depresses the central nervous system, and, therefore, giving you some positive results. My daughters have that kind of effect with anesthesia. My oldest has a procedure coming up that she will need anesthesia for, so she is looking forward to it because it might bring some of her symptoms back to baseline and give her a little respite until they kick in again a few days later.
  13. I was just doing some reading on pyridostigmine/Mestinon. I think my youngest daughter might have Lambert Eaton Myasthenic Syndrome (LEMS) and they use that medicine sometimes to treat it. However, I don't think she would be able to take it because there seems to be the general consensus that it is hard on the GI tract, already has problems with that. I'm not sure it's LEMS, but it's something like it if it's not. With LEMS, as opposed to Myasthenia Gravis, you develop Dysautonomia. I don't have any experience with it, but am curious what you find out!
  14. Pots relapse constant dizziness and vertigo

    I would stay put. With vertigo thrown into the mix with POTS, you should stay down for a couple of days, at least. You can't push through vertigo. Believe me, my girls have tried. It has to settle on its own.
  15. Showering and pots

    My daughter had major surgery about 5 months ago (multiple spinal fusion) and she had to go to a rehab facility before going home. This place was great! The occupational therapist came in about 7 a.m. every morning and filled up a small tub with some water and poured bath wash that you don't have to rinse off in the water. She sat in her bed and was able to wash as much of herself as she could and then the OT or I would help her finish. It doesn't do her hair, but dry shampoo works well for that. Even though you aren't in the hospital, it might be easier to grab a tub of water and crawl back in bed, then you can rest and warm up after without having to move. But, slide the tub aside, you wouldn't want an unwanted bath!! Hope you can get a handle on your symptoms soon!