DizzyGirls Posted March 1, 2019 Report Share Posted March 1, 2019 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. Quote Link to comment Share on other sites More sharing options...
JimL Posted March 1, 2019 Report Share Posted March 1, 2019 I have a friend with epilepsy and a strobe light will set him off. Are they sure it's not epilepsy? Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted March 2, 2019 Author Report Share Posted March 2, 2019 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. Quote Link to comment Share on other sites More sharing options...
WinterSown Posted March 2, 2019 Report Share Posted March 2, 2019 It's definitely overload. Vibrations are one of my biggest triggers. If you have a doctor tell you that sensory doesn't include feeling vibrations then get a different doctor. Has anyone talked to you yet about Sensory Processing Disorder? Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted March 2, 2019 Author Report Share Posted March 2, 2019 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. Quote Link to comment Share on other sites More sharing options...
WinterSown Posted March 2, 2019 Report Share Posted March 2, 2019 I get full blown attacks. I faint, I go lay down, my arms and legs suddenly curl like I've become a human letter 'C, feels like jolts going through my whole body. I make sounds ;-(. I really don't think anyone should put a restriction or limitation on the possible effects this has on your children. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted March 3, 2019 Author Report Share Posted March 3, 2019 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! Quote Link to comment Share on other sites More sharing options...
JimL Posted March 3, 2019 Report Share Posted March 3, 2019 Time of day seems to matter for me. As the day wears on, the symptoms will come on faster if I am up intermittantly. I try not to be up on two feet more than 30 minutes and try to do less and often have to. if I lay down, my heart goes back to normal. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted March 3, 2019 Report Share Posted March 3, 2019 My sister in law has had different types of "seizures" over the years. The first set she would drop what she was holding and stare off into to space for about 5 minutes. Lasted about a year. The second set she would lose consciousness and actually shake. Was very scary. Lasted a few months. Each time doctors said no seizures. EEG was normal. They said it was psuedoseizures. And it was caused by stress. I think the doctors were full of it. Keep fighting for your girls. If it is due to autonomic malfunction, then it will hopefully cycle away soon. Hope they feel better soon. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted March 3, 2019 Author Report Share Posted March 3, 2019 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? Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted March 3, 2019 Report Share Posted March 3, 2019 6 hours ago, DizzyGirls said: 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? Don't know. She has so many things wrong and the diagnosises don't sit well with me. The big thing is she has MS. She also has celiac (blood test positive), small fiber Neuropathy (biopsy confirmed) and gastroparesis (test confirmed). So autonomic dysfunction wouldn't be out of the picture I guess, but she has never been diagnosised with it. When she lived near me they treated her like a hyperchondriac, since moving out of state she has gotten a lot of her diagnosises, but I still don't think they have found exactly what is wrong. I don't think she cares a whole lot at this point though, as long as she can function. I hate when doctors blame everything on anxiety or even being fat. A lot of doctors dismiss female's symptoms. Not sure why that is, but it always made me feel like I was crazy. Quote Link to comment Share on other sites More sharing options...
JimL Posted March 3, 2019 Report Share Posted March 3, 2019 38 minutes ago, StayAtHomeMom said: Don't know. She has so many things wrong and the diagnosises don't sit well with me. The big thing is she has MS. She also has celiac (blood test positive), small fiber Neuropathy (biopsy confirmed) and gastroparesis (test confirmed). So autonomic dysfunction wouldn't be out of the picture I guess, but she has never been diagnosised with it. When she lived near me they treated her like a hyperchondriac, since moving out of state she has gotten a lot of her diagnosises, but I still don't think they have found exactly what is wrong. I don't think she cares a whole lot at this point though, as long as she can function. I hate when doctors blame everything on anxiety or even being fat. A lot of doctors dismiss female's symptoms. Not sure why that is, but it always made me feel like I was crazy. I didn't have all these problems when I was fat. Now that I've lost the weight I have problems. Go figure. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted March 4, 2019 Report Share Posted March 4, 2019 9 hours ago, JimL said: I didn't have all these problems when I was fat. Now that I've lost the weight I have problems. Go figure. A friend of mine had a doctor tell her that the bone bruising she has had for 2 years (after a fall) was because she was fat. She is really heavy and she has had doctors walk in, not even introduce themselves and talk about her weight. She walks out without saying a word. Quote Link to comment Share on other sites More sharing options...
JimL Posted March 4, 2019 Report Share Posted March 4, 2019 30 minutes ago, StayAtHomeMom said: A friend of mine had a doctor tell her that the bone bruising she has had for 2 years (after a fall) was because she was fat. She is really heavy and she has had doctors walk in, not even introduce themselves and talk about her weight. She walks out without saying a word. Compassion is a tough one for a lot of doctors. My wife says with the spate of problems I've been having she'd rather me be fat. Here is a before and almost after. I've dropped another 20lbs from that thinner shot. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted March 4, 2019 Report Share Posted March 4, 2019 3 hours ago, JimL said: Compassion is a tough one for a lot of doctors. My wife says with the spate of problems I've been having she'd rather me be fat. Here is a before and almost after. I've dropped another 20lbs from that thinner shot. Wow! Congrats on the weight-loss. Out of curiosity did you hit a mile-marker age when your problems started? Quote Link to comment Share on other sites More sharing options...
JimL Posted March 4, 2019 Report Share Posted March 4, 2019 23 minutes ago, StayAtHomeMom said: Wow! Congrats on the weight-loss. Out of curiosity did you hit a mile-marker age when your problems started? I don't know what mile marker age is. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted March 4, 2019 Report Share Posted March 4, 2019 7 hours ago, JimL said: I don't know what mile marker age is. For instance mine started when I was 30. A friend of mine discovered he had diabetes and high blood pressure at 30. My husband started have cholesterol and blood pressure problems at 35. It is just those mile markers of age; 18, 21,25,30,35,40... Quote Link to comment Share on other sites More sharing options...
JimL Posted March 4, 2019 Report Share Posted March 4, 2019 1 hour ago, StayAtHomeMom said: For instance mine started when I was 30. A friend of mine discovered he had diabetes and high blood pressure at 30. My husband started have cholesterol and blood pressure problems at 35. It is just those mile markers of age; 18, 21,25,30,35,40... I just turned 57, so no. Quote Link to comment Share on other sites More sharing options...
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