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CharmedLinz

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About CharmedLinz

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  1. Hello All, I'm a long time member here but been away, too many illness things going on and I only have so much energy. Findings have led me away from pure Dysautonomia. However Chaos asked me to check in especially for this thread, so I will attempt to post here as much as I can. I also am presumed to have Convulsive Syncope. I actually have POTS, Neurocardiogenic Syncope, and most likely Convulsive Syncope. I know those don't go together but don't argue with me, these were findings by Dr. Grubb last December, and also my normal Dysauto doc in Birmingham in January. We now also believe my va
  2. The best way to diagnose symptoms being caused by a minor chiari is with a CINE MRI, it looks at spinal fluid flow. Mine was diminished, so even though my chiari is borderline the doc I saw ranked me a 9 out of 10 for symptoms. What area of the country are you in??? Normal neurologists usually over look it or don't believe borderlines cause problems. I will post pictures of mine a bit later today.
  3. There are many Dysauto Docs that routinely prescribe this med to try to "tame" the hyper adrenaline some of us get. My Doctor is one of those, and I must say it has helped over the past 2 years or so. I'm careful to not take too much, though it really has no effect on me. It really just levels things out a bit. I take a 0.5mg 2xday, another on some really bad days.
  4. I couldn't answer the poll questions. It takes way more numbing on me & I'm still not 100% My endodontist did root canals & used 9 ampules. By law that's the max he can use in a single visit. That was on top of 4 halcion which did nothing. It does go along with connect tissue disease
  5. Huh.... Interesting indeed. I have the exact opposite reaction....why does this not surprise me. I've always wondered why Tattoos don'e bother me at all, and actually put me to sleep while having them. Feels like a massage. Now I have a SFN diagnosis through biopsy, pretty severe, showed up in both sites of biopsy I now wonder if this is why I really don't feel the needles, just a pressure. The last one I got was a year and a half ago......no big deal. Though recently I also didn't feel a thyroid biopsy. Never felt the SFN skin biopsies. Lumbar Puncture didn't phase me.
  6. See there..... I knew someone would add some input that I had forgotten. Thanks Sue..... Sue and I share the same type of blood sugar problems. She's right, I completely forgot.... During extreme low blood sugar episodes my Mother has said that I make no sense when I talk. I also shake uncontrollably and my muscles spasm off and on. Blood Sugar problems are pretty common, or seem to be, with POTS or Autonomic Issues, so that could be part of it. You can get a pretty decent blood sugar monitor at any drug store or even wally world for about $15. Strips are expensive but might be worth it to s
  7. Ooooh My I'm sorry you are going through sooo much sooo fast. My Cousin was originally diagnosed at 14, about 15 years ago, hers hit fast too and she also was a soccer player who had to quit everything and almost died of weight loss before being diagnosed. She's doing ok now, not great, but ok. I'm sorry to scare you.... there are a lot of symptoms that can be explain by Autonomic Problems, but these episodes you are describing now with the incoherant speaking and weird doings and fixed pupils......... I'm not a Doctor or anything but those could be some type of strange seizure, especially wit
  8. Oh no Christy I'm sorry.... it's tough enough with 1 sick kid let alone 2. Up until February I had never actually passed out. Now I've lost consciousness 3 times in the shower, while sitting on my stool. I don't think I "fainted" as I didn't have the feelings of getting faint. Just found myself keeled to the side and the water cold and not remembering what happened. Since then now I'm not allowed to shower alone, my Mother sits in the room. During my ER visit in May what was very scary that prompted the 911 call was that I was passing out while lying down. I knew to get down on the floor th
  9. Well you can keep it in the FUNNY zone and just pretend like your tipsy from some yummy adult beverage..... LOL I feel tipsy in the head a lot.... it's a horrible feeling, in that it never ends. Sorry I have nothing helpful to add.
  10. Ooooh boy does this topic hit close to home......as it seems for most of us. I totally agree..... KNOWLEDGE IS POWER!!! You shouldn't be afraid to see what's on your MRI..... though I do understand that it can be unnerving since I see a lot of things that to me look "oooh that can't be good"... but I don't know what I'm looking at. So... Pick something to look at, research images on Google..... gosh Docs should sue Google for putting images out their for patients to research. This is why I say I agree with the POWER part. I've had 4 MRI's.... On the 2nd one before I was diagnosed with POTS I t
  11. Ok No offense PuppyLove............ Leave it to the "youngster" of the group to come up with the best phrase!!! What was that show.... "kids say the darndest things". I LOVE it Puppy........ Gorgeous might be an over statement..... though I have noticed most of us with pictures on here aren't lacking in the good looks department, including yourself. But even soooo add in the Gorgeous part and it adds an extra laugh factor.
  12. I think we should all come up with a very clever saying that we can put on a Tshirt and wear to Doctors Appointments....... If I hear..... "well you look good".......... one more time I'm going to SCREAM!!!!!!!! Every time I hear that my Mother is with me and after we are out of ear shot of whoever said it, I turn to her and say, "REALLY???" She says....... I think that's just the response people are comfortable with, or to try and make you feel better it's just automatic. Maybe it's the lighting...... She says I don't look good to her, pale gray, black sunken eyes, pasty and sick..... How is
  13. Oooh I hope everything goes well for you both. One thing I would ask about with the teeth problems and ear problems, just ask about them checking the AIRE gene. I just had mine done and results aren't back yet, but it involves the Thymus gland, AIRE actually stands for Auto Immune Regulator. She sounds lot like me as a kid only hers sounds more severe. With her ears too, has she ever had vestibular testing??? Fingers crossed
  14. Hmmm, I'm wondering there could also be an "opposite" effect in that mutation. Mine the exact opposite, I have extremely HIGH choesterol, 349 at last check. Yet I eat NO Fried Food, NO Meat, NO Fats. I also have Malabsorption of fat so I don't absorb it which makes no sense with the HIGH.
  15. Had remembered seeing this thread today when I accidentally ran across this article. http://en.wikipedia.org/wiki/Micturition_syncope So we might not pass completely out, but read under "causes" sure sound Dysautonomia like. I don't really get lightheaded, but if I wait to long to go, which is a lot lately since I've lost the feeling in my bladder almost completely, then my first clue that I've waited to long is I start feeling yucky and faint with head pressure and dizzies. Get to the bathroom and it soon subsides. Though it takes longer as now it takes me a good 30 minutes to empty my bladd
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