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About DizzyGirls

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  1. JimL - yes, it does matter on the time of day. The later it gets, the worse they get. The more my oldest (with the vertigo) is up and around, the drastically dizzier she gets. StayAtHomeMom - Yes, that's what they are saying. One doctor even had the nerve to say it was anxiety. I jumped down her throat in a big way. No way was she getting away with that one! Got a message back from her beloved neurosurgeon to see if he can help guide us. Was your sister in law's autonomic?
  2. WinterSown - Sounds like the effects it has is completely dependent on the person. Our chiropractor is always saying everyBODY is different. It is so true!
  3. Have you ever heard of it causing convulsions though? I had actually looked up Sensory Processing Disorder this morning. There's some long articles out there on it. How on earth do you fix it? I'll check out the link you sent. They keep saying psychogenic. I think more autonomic.
  4. No, they aren't 100% sure. But, the way they talk about their seizures, they've got their minds made up. My daughter had an episode today on the way home from a doctor appt. It was either the bright flashing metering lights on the freeway, or someone's blinker signal, those kind that have the 3 flashers in a row. Doctor we saw earlier today said that the EEG was only a brief glimpse into her condition. A commercial, if you will, but she is a movie.
  5. My daughters have been having a real hard time lately and we are not sure, neither are the doctors, of what is going on. The more I think about this, however, I am coming back to Dysautonomia. So here's what happens: flickering lights - cause my youngest to flutter her eyelids, become unresponsive and, if not removed from the situation, goes into convulsions. My oldest gets the fluttering eyelids, unresponsive, then mild tremoring/convulsions. They have both had EEGs and didn't show anything except said it looked psychogenic. I've really grown to hate that word! But, here's the kicker, it's not just sight, it's sound as well. A helicopter flying overhead for too long, too much commotion, loud noises and low bass noises. It doesn't stop at sight and sound, it goes to vibrations, too. The rumble of a low motor or machine, and earthquake, etc. My oldest daughter's response is usually severe vertigo, and my youngest has been convulsing a lot. It's all exhausting. The oldest spent last weekend in the hospital because we couldn't stop the vertigo and she was tremoring a lot. They were rolling her down the hallway to have a CT scan done, and the length of the hallway caused her eyes to flutter a lot, then her arms started moving. They bypassed the CT and got her straight to the back to be seen by a doctor. Have a seizure, that's one way to get in quick!! They are really hypersensitive to all stimuli, so much so that they can't really go anywhere or do anything without having a big attack. Wouldn't want to have one of these in public, that's for sure. I've heard the term pseudo-seizures, photosensitive epilepsy, and Sensory Processing Disorder. Both have the same issue, but their local neuro (who is usually a really good guy), seems to want to blame the youngest daughter's on psychogenic issues. This is definitely not all in her head. Well, it IS in her head, just not her mind. The oldest, they don't know what to make of her, but are trying to get her into a long-term video EEG. This is proving to be more challenging than we had expected, however. Everyone is scheduling out into May. Has anyone ever heard of any of these things happening? Just seems like everything that they see, hear, or feel illicits a drastic reaction.
  6. Thank you both! Haven't bought it yet. Still researching. You caught me in time!😁
  7. Has anyone had any experience with the Vecttor Electrical Stim Machine and Dr. Rhodes? He is from Texas, a podiatrist actually, but has done extensive research into the Autonomic Nervous System and has invented this machine that has helped people with CRPS and the like. Actually found out about him through someone that had actually been effectively helped (cured) with their CRPS with this machine, instead of the other way around. Had a long phone conversation with Dr. Rhodes this morning, and he actually knows more about the ANS than any other doctor I've dealt with, and I've dealt with many! Before we make a very long and difficult journey, I would like to do my research and hope for some feedback.
  8. I'm wondering.... has anyone here been diagnosed with epilepsy? My oldest daughter has a referral to the Epilepsy Clinic at Stanford because a very well-reputed cardiologist thought outside the box and wants to investigate the possibility of my daughter's vertigo being a type of seizure. I recently discovered that my youngest is getting "flicker vertigo". Our LED candles in one of the rooms was causing what I think might be an absence seizure. She gets real tired, can't talk, her eyelids will flutter a lot, she stiffens up, and then when she starts coming around, is kind of tachycardic. Thought this was POTS at first, but I'm thinking otherwise right now. I looked up Flicker Vertigo and her reactions are a textbook description, but, oddly enough, my daughter said it isn't like her regular vertigo, however. She said it's different. Both girls have EDS and POTS and was curious if there are any other POTSies out there who experience this.
  9. I agree with Pistol (well said, btw!). I would not move because you and your family members have POTS. It doesn't matter where you live because it's not environmental. There are people on this site from all over the world and we all have POTS. I do not, but my two daughters do. Theirs is caused by Ehlers Danlos Syndrome. Others have autoimmune issues (my daughter has both). Some people find help in adjusting their diet, sometimes our diets are adjusted unwillingly through MCAS, gastroparesis, etc. Winter is hard, even here in "sunny" CA (ha ha, it's dark and rainy!). Hang in there and God Bless!
  10. We went to Stanford, as they have the only one on the west coast of the US. My daughters' insurance covered it because there were no Autonomic Clinics within the providers that they contract with. So, in their case, they had to make an exception and cover it. Yes, it was well worth it. We saw Dr. Jaradeh, who was phenomenal! I didn't have to really tell him what was going on because he could see it by looking at the girls. They both had tachycardia just walking in the door, loose joints (diagnosed both with EDS), blood pooling, etc. Of course I had to give him their medical history and symptoms, but didn't have to explain how they were affecting them. That was such a relief! Now, all this being said, I would not continue with them for follow up. His PA, who I thought was really good in the past, has made some poor recommendations since that first visit. Dr. Jaradeh doesn't do follow up, he's just too busy. We had to wait about 5 months for our appointment, but I've heard since, that the wait time is about 13 months. The girls had the TTT as well. It has been an invaluable resource as our current cardiologist, who is very POTS savvy, asked if they had ever had testing done and where. I told them yes, TTT, and Stanford. His reply was "excellent". So, it is worth it just for that alone. It gets you in a lot of doors.
  11. Like StayAtHomeMom said, autoimmune. I would have your PCP run an ANA test to see if it comes back positive. If so, the titer should be checked as well. My daughter was having fevers like that for quite a few years. Her ANA came back high enough for the Rheumy to say it was a "true positive". He gave her the option to try Plaquenil. It has gotten rid of those fevers. They can really make a person feel bad. She has suspected RA.
  12. How is your son doing? My daughters have had vertigo for 10 years. Both seem to be caused by dysautonomia. The Epley manuevers and related ones don't help at all, instead they make it worse. My daughter passed out while PCP was trying to do the Epley on her. He couldn't figure out why she wasn't responding to it! Their vertigo isn't inner ear based, it's autonomic. My oldest daughter's is most likely a mix of migraine related vertigo and autonomic. My daughter has the same reaction your son does when standing. Her BP tends to drop. She's on Metoprolol right now and her POTS is much better. Vertigo is still very bad right now, however, but she has after-effects of multiple spinal fusion last year and it does affect the vertigo. I hope your son gets better soon. Vertigo is so extremely debilitating. If he hasn't tried something like meclizine to calm it down, he might give it a try. Benedryl works for some people too, just makes you sleepier!
  13. My daughter's ANS testing came back with a lot of things out of whack, but when she has labs run for other things, a lot of times her blood work comes back completely normal, even though it's very clear that something is wrong, i.e. bladder infection, RA. Her new rheumy was commenting that her labs came back low, which he said was good. No immediate organ failure, no inflammatory markers, she wasn't complaining of pain in her joints, etc. Well, what he doesn't know about my daughter is that she doesn't complain until her pain is at least a level 10! She shoved her hands out to him and said, "well, my hands have been hurting some." She had nodules on her joints as well as swollen joints. He went, huh... there's no markers indicating this level of inflammation, but yet you clearly have inflammation, even nodules. I'll give you the option to try some plaquenil and see if it slows things down. It's been helping some. Just because you're labs didn't come back blaring, doesn't mean your POTS doesn't exist. Could very well have been the tech running the test, as well. Where did you have it done?
  14. You might tell the next doctor who disregards you like that.... "the absence of evidence (according to her) is not the evidence of absence." Both of my daughters have issues with food. Both of them are lactose intolerant and one is now gluten intolerant. Food also does affect her POTS. She's also got MCAD as well as EDS, Hashimoto's, and possible RA and/or lupus. Just because that doctor hasn't put 2 and 2 together, does not mean it can't happen!! That just irritates me to no end! You hang in there and know that you've got a ton of support here. I couldn't have made it this far as a caregiver without their help.
  15. Sometimes my daughter takes melatonin if they persist. She can also get bad tremors as well, which takes something a bit stronger to control. Hers are most likely due to her severe myofascial and muscle spasms from her c-spine fusion last year. If you have things like that, a warm rice sock helps tremendously. Also, if you have pain that's uncontrolled, that's a definite trigger for her as well. It's miserable, though. Hope you can get this calmed down soon.
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