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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 vagus nerve is damaged and causing Eat Syncope as well, but haven't had testing yet. I'm sorry I don't know the issues of the newer members here including the author of this thread. However I think anyone having any type of seizure activity needs further work up. My issues could very well be instigated by the fact that I have a very minor Chiari malformation, but on a flow study I have diminished and abnormal spinal fluid flow. What led me away from pure dysautonomia is that mine seems to be secondary to a Mitochondrial Disease. 99 plus percent of people with any type of mitochondrial disorder have at least one symptom or type of dysautonomia. Mitochondria effect everything. In children with Mito disease seizures of all types are the norm. I will start a new thread with what has been found on me in the 2 years I haven't been on this forum.
  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 spot check her when she's acting funny.
  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 with a fever. I personally would take her to the ER or at least Urgent Care tomorrow, whatever you can get in to fastest. There are forms of Syncope that can cause seizures, but as far as I know straight POTS doesn't cause these all by itself. Again just my opinion but with how sudden all this came on and how it's progressing I would think the POTS is being secondary to something else such as a virus or central nervous problem. Keep us posted.... Sorry I can't offer more.
  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 the minute my hands feet went totally tingly numb and my vision went dark. But being flat made really no difference only that it kept me from passing out more, but in the brief times I tried to crawl to the bathroom or door I passed out 3 times and then once when the paramedics got me up to get on the gurney. What was strange is that laying flat out when they got here my pulse was 117 and thready. I don't remember what they said my BP was, I was very disoriented. With all the joint pain you are talking about have either of them or you been tested for the HLA-B27 gene?? Has your son been looked at for ankylosing spondylitis??? It's something some of us seem to have in common as well, it's just another link into connective tissue problems. My shower things seem to be from water temperature, but I'm not sure. My cousin with this fell through a shower door before she was diagnosed at age 14. Has she just eaten when this happened??? THere was a very interesting mystery diagnosis once about a lady who had Food Syncope or East Syncope, can't remember exactly, try googling it. Hugs to all.......
  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 thought I saw what was a minor Chiari Malformation. How did I know..... well I have all the symptoms so I started looking at MRI pics of Chiari Malformations, doing measurements and making marks on my images. So then I brought it up with the Neurologist I saw at the time. The report said nothing, but he put the disc in and said sure enough it's very very minor, not really measurable but it's there. I've since had 3 other Doctors agree. The problem becomes when other Neuros don't look at the images and only the reports, or when they don't believe in "minor" Chiari problems. Or how about when the Radiologists differ completely in their opinions. My 3rd was read by an interventional radiologist, he saw the Chiari as noted, then the 4th radiologist didn't "no chiari malformation seen in 4 MRI's". The point however is that I sent my both Reports and Images to a leading Chiari center and they think it's significant enough with my symptoms to order specialty testing and a special type of MRI. Even there though I know I'm going to have an issue, because if you read enough about Chiari and read stuff on the web pages of the 2 top leading facilities the only way to really get a good view of how bad a chiari mal. is to perform an "Upright MRI" This makes good sense to me....... GRAVITY people..... GRAVITY makes a huge difference. But the special MRI place is doing mine.... yup lying down.... so we'll see and I will question them until they zip my lips. The health system is broken, and I don't mean in the sense of the way it's done here in the US. I mean it's broken in that Doctors have the ability to control our lives. Why do we have to interview to become a patient and then lose the ability to have any say or control in our health. It's like interviewing for a job, you get it, and then you can never question the boss..... accept the boss is getting paid, not us, and it's not the boss's body, that belongs to us. Get everything that pertains to YOU, it's yours, it's your life and your body. I am very very BAD about confronting Doctors in person. I have no problem with writing letters. There are sooo many things that go wrong. I went to the ER in May, got bloodwork, they said it was FINE. I got my results later that week.... HIGH Platelets, HIGH white blood cells, HIGH Lymphocytes, LOW Neutrophils. HIGH Creatinine. Don't know how that's FINE........ it was bad enough that my Docs made me re-do the labs to get a CT because of the HIGH Creatinine. The HIGH Platelets and HIGH WBC's were bad enough to have my Hematologist order a Bone Marrow Biopsy. MY PCP is very confused on how I left the ER being told I had a virus...........yeah right, a virus that starts with low blood sugar. We KNOW it was either a Mast episode or Adrenal Crisis. My PCP just said I don't know how they can say Virus, with a Virus it's usually your Neutrophils that are HIGH, not your Lymphocytes. With KNOWING comes POWER...... I found my Chiari Malformation.... I found the Doctor and ordered my TTT which got me my POTS Dx..... I found my Parathyroid problem..... I found my Insulin problems. Everything that I do have in my diagnosis folder, was by my own POWER, research, and finding someone to do the testing. The way this works is NOT right. What happened at my Birth will forever be a mystery as my records are gone. I'm 31 and just now that I'm sick is my Mom remembering things about my birth. We knew I was born blue and hypoxic but that's all she was told. Then she was told I had Neuro-Motor Incoordination which kept me from walking until I was almost 2. That Diagnoses does NOT exist, plus it was ignored that I had more skeletal problems than just a weird left foot. Now she's remembering that they kept me from her for 6 hours. That they kept us overnight without telling her why. Now that we are suspecting MITO, the fact that I had trouble feeding for the first 18 months is coming up. The fact that I have tooth and jaw deformities was never an issue before now. We just discovered that I have a sacred dimple. My Mom knew it was there but never knew what it was. Apparently it's a big enough deal with a borderline Chiari that my Mom should have been told about it when I was born and she wasn't, that it should have been thoroughly checked. Only now at 31 years old is my PCP asking to see it and making sure that it stops and isn't a Fistula.... Good thing it's not, because that many years with a Fistula could have been really really BAD. Enough of my Rant.......... Dani you have a private message
  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 that Good??? Last time it was at the Pharmacy, I turned and looked in the mirror...... If this looks good I would HATE to see what bad looks like. Maybe that should be the saying....... "If THIS looks Good, I would hate to see what Bad looks like." Or how about....... "This is what chronic illness looks like" Ok it needs to be more clever..... I'm all out of clever............ anyone???
  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 bladder. Hmmm I wonder how I will feel during the test next week. They are doing Neuro Dynamics on me to test the function of the nerves in my bladder. They fill your bladder up with a sterile solution..........how much you want to bet my body will decide then is a good time to pass completely out???
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