all4family

Hi jjb, That is great that your daughter still functions at a normal level. That must be so hard for you to be sick and have a child who is sick also. And she is only 4 years old? I am so sorry. Your family sure did get more than their fair share of seizures. That is interesting that you have episodes that the nero thinks are seizures. What do you think? Which do you feel causes it? And if you don't mind my asking does your daughter take any medication for the seizures? And if she does has it made any difference? I sure hope you find find some answers for both you and your daughter about this. Take care of yourself. Suzy

Hi Maxine, I am so very sorry to hear of all you are going through. I don't have arrhythmias that I know of, so I don't have any advice, but want to say how very sorry I am for how you are feeling. I do get blurry vision, and have even had blackout vision where my vision goes dark with a circle of light in the center that keeps getting smaller till I can't see. I have also had that feeling like my heart was trying to stop, and a feeling like my heart did completely stop. followed by a feeling of my heart racing. I know when your heart is doing funny things it can be real scary, and I am so sorry for you. And I know how stress effects me. And both the stress of worrying about your brother, and the stress of having a virus is a lot for a body to handle! I really get what your are saying about going to the ER. It's like you know you should go, but you also think what are they going to do?!? And will it help, or make things worse? But you do have to take care of yourself. I am glad you called Dr. Grubb, and your pcp, and I hope you are up and feeling better in no time. Please take extra good care of yourself, and be extra kind to yourself. You deserve it. Healing Hugs to you. Suzy

Well I am real glad you didn't get mis-diagnosed. I love what you said "brain farts still abound"! Thant is so funny! Suzy

Hi Ernie, I also have trouble breathing, and a chronic cough. Mine is all the time though. Not just in the cold. But someone else made a good point to me. It's hard to get enough oxygen when your heart is racing so fast. I also had 2 pft's, and both were not asthma. The inhaler did not improve anything for me. What did the pulmonary dr that did the test say? Suzy

I'm going to have to look to see if I can find that article. I had an EEG done while I was in the hospital last June. They did all of the strobe light flashy stuff to see if they could make me have a seizure (which I've never had mind you). The results indicated normal brain waves during all the flashy stuff but that I had some other unusual spikes I think toward the end of the test. They wanted to hook my up and keep me in the hospital for another three days, and since I had already not slept for the three nights I had been there and was otherwise being discharged, I declined the invitation. I still have it on my to do list to get another referal and have that test repeated. When I flair I often get that feeling of confusion, but it doesn't last long enough to go and get to the hospital and hooked up. Which is probably why they wanted me to stay as an inpatient. I think I read that they do have some eeg systems that you can wear as an outpatient ... kind of like you would for a holter monitor. This is an interesting post. I'll have to bump this follow up on my to-do list and get it over with. Hi again Earth Mother, I don't know how, but I missed your first post. They were going to do the 3 day EEG on me also, but I also declined. I think I just didn't want to be diagnosed, and have the choice of taking some drugs that I knew would make me worse, or losing my license. Please if you do decide to get the test done let me know how it comes out. I don't know if this will end up being something they will have me come back in for or not, but at least if they do I have the other test results for the dysautonomia, and armed with this article I would try it again. At least it is not invasive! Thanks for finding the article. Suzy

Thank you EarthMother, I am going to copy this in my documents, and save it so I have a copy in case there is ever a question again as to what is causing the abnormal results. I really don't want to be diagnosed with epilepsy especially because the medications that work on it make me more sick. I really appreciate you finding this for me.

Hi Cath, That is really interesting. Thank you for sharing this with me. I think it is also very interesting that you had that while sitting up. I had mine while laying down. The second one anyways. I don't remember as well on the first one, but I think I was laying down. I have a sort of spacey feeling in my head all the time. It becomes worse, and severe when I feel faint, or actually faint. What a great thing that you didn't faint or they might have though it was a seizure without all the jerking movements. And I really know what you mean about the feeling like you want to lie down but can't. I had tried to explain that before, but just got told I was depressed. "people who want to give up and lay in bed all day are depressed." So it's good to hear it from someone else. That is quite reassuring to me to know that others here are also experiencing "abnormal" findings on EEG's. When I talked to the nurse she said "huh, this test shows you have seizures, but he didn't prescribe anything to you. That made me nervous until I got the letter from the neurologist in the mail that said that while my test is abnormal it doesn't seem to fit in with the usual ruberic of seizures. So I really do agree with you that there is something strange going on that isn't epilepsy. I was so afraid that I was having seizures that I stopped telling Drs. that I was fainting. Untill I did it in the middle of a crowd, and got hauled off to ER! Thank you so much for your reply. It is very reassuring to me! Hi Flop, Thank you for the reply on the neural ganglion. I am having a real hard time with this test, because most information I find on it is about paraneoplastic syndrome. They do mention it with pots. But most articles concentrate on that. So I don't get much understanding of how it effects me. And I am a informationaholic! That is so interesting about the TTT with the EEG. Do you know what testing centers? Thanks so much for the reply. Suzy

Hi houdinicat, yes that is exactly what it is like an icy burning stinging and alternates with burning hot sometimes. I am soooo relieved to hear it is a pots thing, because the one on my chest is quite disturbing. Come to think of it when the neurologist was checking me for dysautonomia he put something on my foot and said this should feel hot. I nodded as it did, then he put it on my other foot, and said hot again. I began to nod yes then said no it doesn't feel hot. He had to leave it on there about 30 or 40 seconds before I felt it. I have been to a chiropracter, but stopped going because I was getting worse problems with my pain and joints popping so I thought I better not keep going. Thank you for sharing that. jjb, I looked up raynaunds, and the picture didn't look anything like my hand. Although my hands as well as other parts of me do turn blue. My veins beome very bright blue occasionally. And when I'm not feeling good one or both of my hands turn blue. I know neuropothy is what diabetics get so is it also a pots thing? Thank you for sharing. Suzy

I just had to say I am soooo glad I am not the only one afraid of the gastroenterologists. I have been avoiding that for 5 years now, and have a appointment for a EGD no sedation on February 17. I have been doing everything I can to think of a way to cancel without offending this Dr. as she is the one who did the right testing on me to get me this diagnoses. She knows I don't want to do it, and is trying real hard to get me in there. I have stopped vomitting again. So I don't really think I need to go. But I had stopped vomitting once before too. Sorry I know this wasn't about the subject. I hope you are able to get your weight back on. I know how that feels. I also know how the other end feels oh well. Suzy

Hi Jan, yes...I agree there are so many chemicals in our world. I never even realized it untill I became sick. I never used to get bothered by chemicals, so just didn't think about them. It's funny, because I just got through reading the ingredient list on the back of a macaroni and cheese container that my husband was going to eat. I had a hard time finding words on it that even sounded like food! I have had to change a lot, just to get functioning again. First I had to get off all drugs. And when I did it I really wasn't sure it was going to help, because the doctors were telling me it wasn't the medication that was making me sick. As a matter of fact they didn't believe me that I was taking the medication (the one for anxiety) because they said if I was that I would be feeling better. So one dr even did a urine drug test without my consent, and guess what?!? I was taking my medication. Funny they usually use those to prove you are on drugs. Not to prove you won't comply with drugs. He was acting as if I had a court order to take them or something, and I didn't. Total invasion of my rights. And the worst part was I had done nothing bad. I was just trying to get medical care because of how sick I felt. But I am happy to say I did get off the medication, and it did make a world of difference. I am still not well like I was before, but I am hopefull it will eventually fade away. (I know I am getting the idea don't hold my breath right? Even the Dr that diagnosed me gave me that look.) I have to use special soap and shampoo. Nothing with fragrance, deffinatly no msg. I just suffered my second very severe rash due to eating a food with msg. And I had read the ingredients, but I guess I was just feeling foggy, because I didn't notice it. My daughter read it again. I guess it would have been nice to tell the allergist this. But that would have been too much info. I am very glad you have found some good neuros. I know they say that neurology is so complex, because they just really don't understand all the workings of the brain. So if you got some good ones that are really trying that is just so great! What does the NRT test for specifically? I'm glad your not eating that bad stuff. Its just good advice for anyone healthy or not. Have you ever tried juicing? There are a lot of health benifits from fresh juicing. I certainly notice a difference in how I feel when I keep up with juicing every day. I wish I could say it was a cure, but it can't hurt thats for sure. Yes I agree with you on the vaccines. I got a flu shot for the first time because of all the hype about bird flu. I also got my kids one at their Dr the same year. Their Dr said the kids one she has has no mercury in them. But the one I had just got from my Dr did. I started becoming sick after that. And you know what the worst part is? Both me and my kids used to be real healthy people. Every year people had the flu, and I would never even get a cold. I didn't even know what the aching muscles of the flu felt like. EVERY SINGLE year since I got the vaccine I have gotten the flu. And so have my kids. Just wish I could go back and change so many decisions I made in my life. But all I can do is move forward. Now I need to find out how I can legally avoid getting any more vaccines for my kids, because I really don't want them to go through this, and even though I don't have proof that is what started it I am pretty sure of it. Well I hope your test goes real well. And I hope you get the answers you need. Let me know how they go. You can send me a pm. I will keep in touch, thank you. Suzy

Hi ajw, I'm real glad you grew out of your seizures. And I'm glad you don't take it for granted. (people who have been sick can really appreciate just feeling well, or at least better, like no one else.) I am so happy for you. Hi jjb, sorry about the seizures your daughter has. When you say spikes and waves are they on the same test? Mine was abnormal on the left side of my brain for both tests I had 3 years apart. On one test they were sharp patterns, but constant. And on the other they were slow patterns, but constant. I didn't get spikes which is why I don't think they think it is seizures. It is just a constant abnormality. Do you know on your nephew what they said his was abnormal from? Thanks for sharing. And I hope your daughter will outgrow her seizures like ajw. Hi Miriam, thank you for that information. Yes it does help me a LOT. I will be spending the rest of the day looking for that article, or one like it. I feel the (brain fart) feeling almost constantly. It improves sometimes (when I'm laying down usually) but never goes completly away. Is he saying the diagnoses of seizures? Or something else? Thank you so much for sharing this with me. And I do know that everything is not pots. But for me ALL my symptoms started at about the same time. I have so many of them, and tests that are off, but no one really knows why. That is why I am hoping to find answers and solutions. Unfortunatly my symptoms got much worse with most medication, and I don't know what treatments if any I can take. So maybe it is like a RUSTY needle in a haystack, even if I find the answer, can I really use it. Thanks again for sharing this info. take care. Suzy

Hi ajw, Thanks for the thoughts. I don't know what Raynauds is, but I will look it up. I do have a pinched nerve in my neck, wonder if that would cause it. Thanks for the "speculating" will look some stuff up now. Suzy

Hi ajw, Yes the blood test was positive. High levels too. And no they didn't feel it was seizures.(neither did I). They said it is unclear what is happening. I guess I am trying to link all that has been happening to me to this now. I am wondering if maybe the antibodies to the ganglia could case that, or just plain lack of blood. So did you just outgrow your seizures? that's great if you did. Thanks for the response. Suzy

Hi, I am just wondering if anyone has had abnormal EEG'S? I had 2 that were abnormal, and they didn't know why. Said it is clear that it is not normal, but do not know the cause. I also had the blood test ACHR.neurl.gangl.AB, and am just wondering if there may be a connection. Also am wondering if others have had abnormal EEG's, and what the cause was determined to be. Thanks so much. Suzy

Hi, I have constant head pain. All over pressure, and I get migrains too was told some of my vision issues were migrains. I get a pressure pain behind my left eye. My muscles on my neck hurt always. and the base of my head swells a little and hurts. So sorry you are hurting so bad Jennifer. But we couldn't come shoot you. We would miss you too much. I hope you get feeling better real soon. healing hugs to you. Suzy

Hi Hollie, yes it is so strange isn't it? I am just so relieved to know someone elses has experienced this. When it happens all over my chest all I could think was it must be a heart attack! Thank you for sharing it's good to know I'm not alone. Suzy

Thank you EarthMother. At least I know I am not the only one with it. It always takes me off guard when it happens. Like my son's hand was a little damp, and he touched mine, and it started then, and lasted for a couple of hours. So frusterating though. Suzy

Hi Jan, Thanks so much for the hugs and understanding. I have to confess I had to look up the word deity. That is just wrong! And too many do see themselves as superior people. (at least from my experience.) I went from being a person who never goes to a Dr. to going all the time. So my experience mostly relates to how I was treated when I became sick, and they thought it was all in my head. I probably did share too much, but the problem is I really don't know what to share. I don't know what one thing might make a difference in diagnoses. I went for so long thinking I would eventually die from this and never even know what it was. I don't know what it was that led the doctor that tested me for the antibodies that led to my diagnoses. So I try to get as much information accross as I can. I just figure they can take what they need and leave the rest. When the resident was asking me questions I just answered them. The one Dr I really needed to ask questions to stunned me by giving me a diagnoses. So when he asked me if I had any questions I couldn't think of even one! I do the stuttering and stammering thing (unfortunatly) all the time. I have improved though after coming off of medications. It becomes much worse when I am nervous or upset which I was. I am not getting the whole mast cell thing yet, but I am still soooo new to having this diagnoses that I don't get the whole pots thing yet either. But I was alreay going to an allergist, for my rashes, and I kept finding more things on it that applied to me that I decided to mention it. I have always known that somehow the medications either caused, or triggered this thing I had. At first I thought it was just one or two, but then I would just keep trying more and more, and got sicker and sicker. The first time I remember having very strange symptoms was a couple of weeks after a flu shot. I had never had one before. Then one thing led to another, and I was trying drugs, and getting sicker and sicker. When I came off the drugs I improved. Never to where I had been before, but I was at least partially functioning. Then I took a antibiotic which caused a problem which led to another med...etc. etc. etc. I love the idea of doing things naturally because of this. I am so happy you found a Dr. that can help you that way. There are some natural Drs. in our area, but I don't really see any Drs. right now on a regular basis. I basically wrote them off. The only ones I see are for diagnosing purposes, and I really don't know where I am going after that. I do juicing, at least I was when I was feeling good enough to stand at the juicer, and wash the procuce, and then wash the juicer. But I do want to start it again as it did give me some much needed energy. It sounds like you have a great Dr., and are getting a lot of benifit from it. That is so great. What area are you from? Thanks so much for the support. I hope you keep getting the help you need. Take care. healing hugs Suzy

Hi, I am just wondering if this is a part of pots? I get these feelings on my skin mostly my hands, but also on my chest, neck, face, and legs. It feels like a block of ice is on my hands. It especially happens when someone touches my hand. It feels like my hands, or wherever it is, has been plunged into ice. It is like the stinging burning you would get if you left it in the ice. I used to think I was having a heart attack or something when it was all over my chest. Suzy

Hi Ernie, I am so sorry for all you have been through. It is hard enough to have a physical problem bringing you down, but to have to deal with all the other stuff on top of it is just so sad. So very sorry for your pain. Thank you for the explanation for the Genetic pots. I am thinking that my dad had the same thing, but just did not know it. Wow that is a lot of people in one family to have this. I sure hope you get some answers, and help soon. Suzy

Hi, After getting sick 5 years ago I began vomitting continuously throughout the day. I was on xanax. I was told I had anorexia due to rapid and exessive weight loss. After getting off the xanax, and discovering I could eat, and not throw up when laying down I began gaining weight back. I was scared because I had been told that if I kept losing weight at the rate I was, I could die. But the weight came back on almost as rapidly as it had come off. I read somewhere (maybe on here) that with ANS problem nothing is the norm. Even though most tend to have trouble keeping weight on I would think (and this is just my own thinking here.) It depends on how your nervous system is being effected, and how the drugs you are taking effect your nervous system. Because I have been on both extremes on this, and it seemed to center around the xanax for me. Or maybe just the not vomitting part because I was laying down. I still have to lay down to eat, but I gain weight very easily now. But I would rather have that problem than the constant vomitting! Anyways good luck with it, and I hope you find an answer. Suzy

Hi Katherine, I just want to say I am so sorry about your sisters loss. It is so tragic that it happened and I can understand wanting to understand why it happened. Your sister and your family will be in my prayers. I had pre-eclampsia with my first pregnancy, but no abruption. I was on bed rest for 3 months. I had a early mis-carriage for my second pregnancy. I think it is a good idea doing some type of research into this, but at the time of grief you and your family are going through may not be a good time as you all need time to heal. Again you are all in my thoughts and prayers, caring hugs, Suzy

So this probably wouldn't work if the cause is autoimmune? I will get an exercise ball, and try anyways. The worse that can happen (I hope) is it won't work. Do you just bounce up and down? My world usually looks like it's bouncing anyways. Maybe it will look normal this way!

Hi sara, thank you. I am definatly able to do some of those, but was not sure on the elbow one it looked like the arm was all the way backwards, mine doesn't go that far. I've had a poppy elbow my whole life, and have always been flexible without stretching. I could do the splits when I was younger, without stretching. But if I did it now I'd hurt my self because the joint inside my leg always catches and pops. It's terrible to go through life not knowing you shouldn't pass out. I didn't pass out a lot, except once when we had a contest who could hold their breath longer. I lost! But I was always feeling faint or woozy now that I think back. We would go to our outdoor swapmeet, and everyone in my family would get mad at me because after 10 minutes of walking and the sun I felt like I was going to faint. I had to find a shady spot to sit, and missed out on the fun. We just decided because I'm a red head I don't tollerate the sun very well. I'm glad you got a diagnoses, (finally caught that elusive zebra) and hope that means help or treatment for you. It just seems like these conditions can't be treated very well...I am going to go check out the endf website, and see if it might apply here. It's amazing I went from trying to "change my thinking so I would quit making myself sick" to finding all you on here who have gone through so much of the same as me....Thank you for the websites, and I will definatly be looking into it. I'd like it if my body would quit hurting so much. Suzy

Hi, I've had similar symptoms to this. I had a lot of issues with twitching in my face, and my tounge would click in my mouth all the time. I still get some leg twitching, and the face stuff if I'm feeling very bad. I also had severe muscle weakness and still do. I believe I was muscle waisting, because my urine was dark rusty brown. Most of these symptoms have improved since I got off of xanax, but had a second attack after getting off, and taking some other non related medications. I had breathing problems much like what anna is describing,but also accompanied by severe all over chest tightness, with my chest and arms, and frequently my whole body becoming numb almost dead feeling when I sleep, or lay still for very long. I usually have to lay in bed about 5 min after waking so when I stand up I can hold myself up. I don't know if it is pots? Or related to the medications for me. Or something else all together. I hope you get some help and answers for this, and am so sorry for your pain. Suzy