all4family

Were you on it everyday or almost everyday? I've probably taken...maybe 7 in the last 5 weeks. I hadn't taken one for 2 weeks until last night. Maybe this isn't the medication for me - I'd rather not be this tachy again and I guess I can get by without taking it for now since I went 2 weeks, anyway. My doctor said I wouldn't have any withdrawal from minimal occasional use - so I hope I don't. I try to be careful. Hi, I was eventually on it every day, but my medication was very badly managed. I began having severe reactions to it from the first time I took it. instead of recognizing the problem with the xanax they had me take more, figuring it would stop my severe heart rate and blood pressure fluctuations. Eventually a neurologist recognized that it was the medication causing it, now I had to withdrawl off of it. But almost on the first day of stopping I began improving. Even with the withdrawl symptoms. I am not trying to say that is what your problem is. Just to share my experience with you. We all know our own bodies, and you know best what you are feeling. And like someone else said it could be from something else. I hope you get feeling better soon. Suzy

Hi, Just from my experience with xanax, and it wasn't a good one. I had a lot of problems with it. I became much sicker on it than off it. When I had to withdrawl off it (it was prescribed for "anxiety" not dysautonmia) I met a lot of people who had only taken very small doses, and they did have reboun withdrawl. I had bad tachacardia continuously while on it, and it improved when I stopped it. But I am only telling you my experience. I don't know your situation, and I am certainly not a Dr. But if it happens again be sure to take note of what you took, and let your doctor know. I just wanted you to know that xanax does bother some people, and the people I know don't even have dysautonomia. I do hope you figure it out, and you feel better. Suzy

Hi Julie, I don't know what IgG is. The test I had was part of a paraneoplastic syndrome panel. It tests for immune markers against cancer. usually lung cancer. It is a form of dysautonomia. (that is the way it was expained to me.) It can occur with or without cancer. I really don't know how they tell for sure if it is occuring with cancer, but I was just happy they didn't mention cancer once to me. Some people with pots, and something called GI dysmotility (I'm sure you guys know what I mean I can't remember the exact name) I am going to an allergist on monday, because I have all over body hives. I seen you also have hives. Does the IgG have to do with allergies? Sorry I don't know an answer about the IVIG thing. Maybe you can tell me what IgG is. And do you know if it is common for people with dysautonomia to have hives? Oh. The one thing I can tell you is that the Dr who did the testing before I even knew the name dysautonomia said it is a neurological autoimmune disease that I had tested positive for . So I don't think it is the same as allergy markers. But I really don't know. Wish I was more help to you. Suzy

Hi Carinara, Thank you so much. I am so sorry it took ten years to find out what was wrong with you. I know what you are saying about the self trust. After being told for so long that I was the one causing my problems with my thinking I started to really think I would never be normal. Because as hard as I tried to get better by changing my thinking it never changed. The only thing that seemed to help was laying in bed. Then I got labled as lazy. I fought to not look "lazy". And really turned with anger on myself and my body. I was also told to go out and do things even if you feel bad. And I did. Going to the store during my vomitting period was awful because I had to carry paper towels or cups because I would puke all through the store. And usually several times. And once when a friends dog I was watching got out and wouldn't come to me I had to go running through the streets trying to catch it. My counselor at the time said see and you didn't have a heart attack and die. No but I didn't come out of my room for 2 months afterwards either. Being a single mother already pushes your body and mind past it's limits. And to take on the added burden of facing your "fears" that are not even fears trying to do what healthy people do. It is terrible what a mis-diagnoses such as this can do to a persons life. All because some doctor can't figure it out. instead of saying I don't know what it is. Maybe there is somewhere else we can send you to find out. It's easier for them to blame the patient. I know that all doctors aren't like this, but I sure wish I had found one that wasn't when I first became sick. I know a lot of the things that I did in the name of "getting better" made things much worse.. I so glad that the diagnoses changed your life for the better. It's funny. I've had people tell me you don't want a diagnoses. It's a label on you. But it was ok to label me as "crazy"! I thought I was strange for being happy about the diagnoses. But at least its not the things I thought it was before I knew. Like heart disease, and lung cancer. so I am glad to hear that the diagnoses changed your life. I know it will change mine too. It already has I am meeting a whole lot of wonderful caring understanding people who have been through a lot in life, and come out the other end better stronger people. Thanks for the encouragement, and sharing. Suzy

http://www.ada.gov/ heres the Americans with Disabilities Act home page...Maybe something there will help. Safe work environments should be available for all! Love the first 2 posts by the way! Suzy

Hi dsdmom, Thank you, I didn't really ask him about the IVIG as the conversation was on the phone, and I was just so stunned I really couldn't think. He mentioned some drugs, but a large part of my illness was made SEVERE with different drugs I was tried on. And it was very evident from the way things took place that the drugs made it very bad. I became oversensitized to everything. even fragrance, and some vitamins. I get all over body hives a lot. And don't know why. I am going to see an allergist on monday to see what they can tell if anything. Thank you for the info on the mestinon. That is a drug he mentioned if the other stuff doesn't help. I am willing to try again, but last time I took something (it was an antibiotic) I had a reaction, took benadryle, gave me high blood pressure, 186/106, took an asprin, thought I was having a heart attack, had tests done with dyes and "more drugs". found nothing and spent the next 6-7 months in severe illness untill I finally started pulling out. So even though I am willing (just barely) I am happy that this doctor really heard my story, and understands, because for the first time since I've been sick it is the doctor wanting to try "other things first". I once told my mom I would eat poo if it would make me feel better. I proved it when I found out I have secondary hyperparathyroidism, and decided to get vitamin d from unflavored cod liver oil! I will keep in mind about the liquid if he does decide to go the drug route with me. And when I get more information on the IVIG I will let you know. Thanks a lot. Suzy

Hi Jennifer, Thank you. You are right. It doesn't make dealing with it easier. I somehow thought that I would get the diagnosis, and feel better. But I had a kinda bad day today. (But I smiled because I at least knew why.) The whole real word thing is so true. It's other people we want to believe it's real. We've known all along! Thank you for the welcome to the crazy, orthostatic extended family. (finally somewhere I fit in!) I look forward to sharing the love support and misunderstood understanding! lol I just love the humorous people of the world! Hope and healing to you too! Suzy

I am so sorry to hear that happened to you. As a mother you want to do everything you can for your child, and when you can't get help in taking care of that it is devistating in itself. But that just adds insult to injury when you are told you don't know your own child. No one knows your child better than you, and the doctors should listen if you know there is something wrong with your child. What are they going to say? Your anxiety is making your child sick?!? How frusterating. Thank you for sharing that, and I hope things are going better for your daughter now. Thanks for helping me feel I can vent. I have a five year backed up ventilation system! What a mess! Suzy

I'm trying to learn how to do the quotes without just hitting reply, but haven't quite figured it out yet. So sorry for repeating the whole thing. Hi again Janie, I am so glad to hear that about your mom. Happy Birthday to her! What a wonderful story of courage! It sounds like your family has grown from that experience, and I would bet that you have great understanding of her due to what you have been through. The hardest things in life can make us appreciate the smallest things more. I am so glad you are going to mayo. I would have never gotten a diagnoses if I hadn't gone to them. Do you have to travel very far to go there? That is so funny about explaining the illness. I haven't had that experience yet, but do have a local cardiologist due to a aortic valve leak. I can just imagine what he will say. I really get what you say about the permission thing. Just since I learned about it my family has tried to do things to make things easier for me. My mom even finally talked me into useing one of those carts in the store. I usually have to go in get stuff quick, and am so bad by the time I get to the register I can barely check out, and end up making excuses like oh gosh I'm so tired I've been running all day.(even though I just got out of bed, and was going to get back in when I got home.) I spent a whole hour in the store when I used the cart! I think that my family would do anything to help me if they only knew what to do, and now they can. I didn't know how to help me before. I just knew I couldn't do things like I had done before, so I gave up on having a normal life. Now I know it might not be normal, but it can be better. I'm glad that I'm not the only one who needs to lay down. I have laid on the ground, on benches, in some of the weirdest places and never understood why I needed to lay down.(I once went in a public bathroom when out in public and sat on the toilet and laid my head back for as long as I thought I could get away with it untill someone came looking for me) Yet I just knew I couldn't do one more thing without laying down. I even learned to clean my house in spurts. I'd do a little. Go lay down. Go back do a little more. Go lay down. And this was only when I started getting better. I was happy to be able to do that. Thanks for the offer of the PM. Haven't learned how yet, but when I do you may take the offer back! lol. And please. The same goes for you. PM me any time. Thanks for the support today. Suzy

Thank you so much for the support. and the kind advice. I am sorry you are having a rough day, and I hope you take some of that kind advice for yourself too. The rest when you need to, laugh when you need to, cry when you need to, was much needed advice. I will definatly be trying to put that into effect. I wish I could find a local Dr I feel comfortable with. The Drs where I live all seem to know each other, and my name became well known around here. I only have a few hours to drive to the mayo clinic though. The only promblem is for emergencys. But I won't worry about that till I need it. Thanks for the encouragement, and the boat to share. I've thought I was on a raft of craziness alone in the middle of the pacific for 5 years. Feels good to have some understanding company, instead of hungry sharks! Suzy

Thank you so much for your kind words. They brought me to tears. Were they able to help your mother at all? I am so sorry about that. I understand what you are saying about leaving ER in tears. The reason I quit going to mine (there is only one in my town) was because being a small town the first 3 or 4 visits they had peged me as anxious. I did ask if it could be anxiety. Only because I didn't really want it to be my heart. The drugs they gave me made me EXTREMLY sick. I couldn't even stand right. After being threatened to keep taking them (saying they would get a court order even though my only crime was frequent trips to the ER) I kept taking them. Then they tried to get me to stop coming, and once locked me in a solitary room not even able to go to the bathroom. Even though I wasn't a threat to myself or anyone else. I didn't even voluntarilly go in. Someone found me in a chair trying to get better before I finished walking home, and called for help. I was coperating with everything everyone asked me to do, and was never even a difficult patient. I would beg for rare testing, as at this point my illness was so extreme I couldn't keep any food down. I would vomit sometimes 50 times in a day. I had lost over 120 pounds, in less than 8 months. My urine was brown. I had a nurse tell me they would take my kids from me if I didn't "straighten" out. It was at this point that I decided I would rather sit at home and die with no help than to go through this anymore. It wasn't untill I had a second EXTREME episode that lasted for months on end that I sought help from the Mayo clinic. They renewed my faith in the medical profession. I am still nervouse, and never fully admitt how sick I am. But it is only out of fear from my past. Even when they couldn't find much on the tests they kept looking. I had a lot of little things show on tests, and a couple big things. But this explains all my stuff I think. So I am happy to have gone to the Mayo clinic, and hope you will be to. I am also returning to mayo to see an allergist on Monday. Which Mayo are you going to? I go to the one in AZ. I am glad to hear you are going there. Oh. I also get what you are saying about BP being told you took it wrong. I was real bad one day, and couldn't get up very well. thinking my bp was high, (because I figured that was my problem) I took mine. It was 76/35. I took it like 3 times, and it was about the same each time. I was told it was an error with my machine. That if it was that low I would be dead! (that was comforting) And when it was taken in the hospital and was low they repeated untill it came up to normal. and that was what they wrote down. (that helped.) Yes the feeling of empowerment over this "thing" that has robbed me of 5 years of my life and validation is what it is that makes me happy to have the diagnoses. You gave me the exact words to how I feel right now. Thank you. The Dr probably thought I sounded nuts on the phone, because I sounded so happy. But really after 5 years of suffering in silence it is a relief to get a diagnoses. An explanation of what makes me feel the way I do. A way to move on with my life, instead of waiting all the time for this "thing" to pass. Thank you so much for your encouragement. It really meant a lot to me today. Oh, and as for the person who said for people that are really sick. I am sorry he said that to you. He wouldn't if he had to walk even one day in your shoes. Suzy

Hi Everyone, I just wanted to let anyone who was interested know that I got the phone call this morning, that I had Orthastatic Intolerance. I am the one who posted the question about the Autoimmune disease. The blood test was the ACHR.neurol.gangl.AB. And it is the thing that led them to test me for dysautonomia. I knew for the past 5 years that what I was experiencing was not symptoms of anxiety. I had quite a hard time with my local Drs, ( stories to write a scarey movie on!) and got to the point I wouldn't seek medical help even when I passed out. (not that you have a choice when your out!) So thank you guys for the support and help with my questions...if anybody has any advice please offer, as having a "real" problem verses an "all in my head problem learn to calm down or ignore it",is all new to me. Oh...my doctor wants to try other natural things before the medication due to severe medication reactions. But said if they don't help we can try pyridostigmine / mestinon. But I feel better (emotionally anyways) just knowing that I am finally "allowed" to be sick. For 5 years I have had to try and hide my symptoms the best I could, because no matter what they were I was told it was in my head. I passed a kidney stone, and still refused to go to my local Dr. And let me tell you that hurt! Anyways thanks for listening. Suzy

Thank you all for the help. I just wanted to let you know that I did the testing today, and there was no medication used. The hardest part for me ended up being the valsalva manuver. ( I think that is right). I asked the woman if they would be able to "tell" anything on the test, and she said I think they will be able to find "something" I took that as meaning there is something to find on there. She also told me if you really have dysautonomia it doesn't matter if you are feeling good. The test is very specific and will see it. The one thing I did see was I looked up at the monitor once, and my bp was 77/something. But I really don't know anything. I am just happy to have done the test, and not been given any medication. Thank you all for your support and help. healing hugs Suzy

Thanks again for the info. I will be looking that book up. Nice to know there is so information out there, as I understand this to be a rare condition. Where is Dr Grubb located? I looked at the list of specialists, and didn't find any close to me. Although I am very happy with the Mayo Clinic, I don't know what will be happening after all the testing is done. thanks again, healing hugs Suzy

Thank you Ramakentesh. I do appreciate the information. The best place to learn is from others who are walking the walk. Is Dr Grubb a specialist? When I first learned about this I thought that was the standard, or at least many people have this blood test to determine dysautonomia. Thats why as I was reading here no one was even mentioning the blood test. So I guess I just wondered how it fit into the whole dysautonomia thing. I thought all dysautonmia was considered autoimmune. Thank you for the information. healing hugs Suzy

Thank you for answering. Yes I believe they know what to do. It is at Mayo Clinic in AZ, and it was a GI specialist that did the test. She refered me to a neuro at the Mayo also. I think he might be a specialist in dysautonomia. I understand the Mayo specializes in this stuff, so I am sure they do know. I just don't know what to expect, and I will have to travel for each treatment. But it is a small price to pay if it helps. Anyways thanks for the answer. healing hugs

Thank you so much for the information. I think I am confusing people because I keep forgetting a part. (sorry brain gets kinda slow) its ACHR.neurol.gangl.AB. and that is what she said is my body is attacking my ganglionic part of my brain, or central nervous system. I just have had so much happening its hard to remember and get it all straight. Thanks for the info on the IVIG also. does that mean you have to go to the DR for the treatment? I really appreciate the help. Thanks. healing hugs Suzy

That is the one. I keep forgeting to put the ganglionic part to it. Thank you. She did say there is no cure, but there is a medication for treatment. Is this still pots? or does it make it something different? Or is it pots with a twist? I am going to read this now. Thank you. healing hugs Suzy

Thank you for the help. I do know that it was part of a paraneoplastic syndrome screen, and that that is why I am having further testing done. I know mine was definatly positive. I don't think it has anything to do with hashimotos or mastayes Graves, because those were not mentioned. But that is very interesting that the autoimmune disease is so closely related to dysautonomia. My Dr said I have a neurological autoimmune disease. dsdmom can you tell me what IVIG is? I had to take 2 shots for each pregnancy for being RH-. I believe it was called rogahm. That is like an autoimmune thing. Is it like that? And if you know do you know what is considered a high level on this test? My Dr. (who by the way I am very grateful to because she told me she believed me when I knew no one else did) said I had a high level. It was something like 46 times as high as it should be. I thank you all for helping me with this. healing hugs Suzy

Hi, I just have a question. I have been reading a lot of things on here, and haven't seen anything about the blood test that I had done. It's a antibody marker called ACHR.neurol.AB. It measures if you have antibodies to the ganglia. Has anyone else on here had this test done? And if so where did it lead your Drs.? Or has anyone on here heard of this? I am just wondering. Anything anyone knows about this would really help me. Thanks so much, Healing Hugs to all Suzy

Meg, Thank you for the encougagement. I feel a sense of relief after so long of just not knowing why I felt that way, and feeling like I am the only one. I have been reading on here what others go through, and I finally feel like I am not all alone. I am glad that there are people who have had the tilt table without the meds. The Dr didn't say anything to me about meds, and knows I have some very serious problems with them, so I am hoping it will be without. Either way I will probably just ask not to have any. Seems it can be diagnosed without it. healing hugs Suzy

You are so welcome. I am glad I was able to share my experience. Are you coming from canada? I am not sure about the laws, but do know of some people who have "winter tires" but I don't know if that is what you mean. Good luck. Suzy

Thank you so much. I am glad to hear that. There are a lot of tests I wouldn't do due to the meds. I have waited for 5 years for a "diagnoses" that explains all my symptoms together. Not that I really want a diagnoses of anything, but it sure would be nice to understand whats wrong. Would relive a lot of "what ifs" of not knowing. Like "what if" lung cancer as that is common with the paraneoplastic syndrome. And I know for a fact I have issues with my heart rate and blood pressure being very erratic. like VERY high, and VERY low. And my local Drs would tell me either when it was low...76/38 (and trust me I was feeling very bad) they would say it was a error with the machine. Even though I took it 3 or 4 times.And when paramedics couldn't get a blood pressure they would just keep taking it untill they gave up and told them at the hospital they couldn't get one. I was told if it was that low I would be dead. Or if it is very high h/r (I love this one h/r of 170) well you must just be anxious, since you've been here (laying down) your h/r is fine. In fact it is so good I wish mine were that good. (Trust me I wish it too.) So this test really does mean a lot to me. It means the difference between me getting local medical care or Drs who just think I'm anxious and making my h/r and b/p do that. I even said to one Dr who said we all know why you are here (after passing out on my face in a large crowd). And I said back to him so you are telling me that passing out is from anxiety? He said with you yes. So I have special medical rules made up for me. I feel so special! As for the meds. That is very reassuring to know. I was told I couldn't be allergic to everything. And really coerced and (I hate to use the word but it was what happened) threatened into continuing to take medications. Even though I had horrible all over body rashes vommitting that started with the medication, and eventually stopped without it. They would just tell me I was "afraid" of taking the medicine. I didn't know fear turned your urine brown, and made rashes. And I would tell them I am just very sensitive to medicine. But they would tell me you can't be sensitive to everything. In the hospital someone was injecting nausea medication into my arm, and I could feel it burn all the way in. As I felt it burn my heart started racing and the moniter that I was on took off beeping. I asked what she was giving me, and she said I needed to calm down. I was way too anxious about getting medication! But she called another nurse in while they both made themselves look busy, but were really watching to see if my h/r would come back down. I had told my Dr about the swelling and she couldn't help me for 2 days. and if you've had an ear infection you know how painful they are. I couldn't sleep for 2 nights. and by that time all the other swelling was gone. But my ear was swelled completly shut. They couldn't get an odoscope in it. So the diagnoses of ear infection was made solely on the basis of the severity of the swelling. It's really nice to know that all these symptoms that I have been told for so long were in my head other people have. Not that I am happy for anyone being sick. But I became a shut in for 2 reasons. One just being unable to do almost anything, and two not being able to get some help for my symptoms I just decided to hide them. I began to lie to the Drs. and told them I felt fine. (didn't want to be accused of being a hypochondriac) And lie to everyone in my life. I would tell them I was just tired and healing. I went on and on again. I am sorry. I guess it just feels good sharing these things. Thank you for the support, and just a place to vent this stuff. healing hugs Suzy

I am sorry to hear that. I know my local Drs didn't help me at all, thats why I went there. For me I had a lot of testing, and seen a lot of specialists, and my last bill was around 9000.00. But I would of sold everything I owned to get the help I have gotten there. I sure hope you can find a way to make it happen. Good luck to you. Suzy

Hi there, I did actually watch your video, just yesterday. Then came here because of your video. Although I had been here before I decided to join yesterday. Thank you so much for making the video. It helps people so much as we are learning about these diseases we have to be able to learn more about them. I don't think I have "textbook pots", although my hr does climb usually about 50 upon standing. But I have such a huge list of symptoms that it would make any Drs head spin. But my hr does come back down a bit sometimes. Never to where it was when I was laying though. I don't think they would have a problem with me not taking the meds as I have really demonstrated more than once a complete intollerance for medications. Does it matter if after your HR goes up say by 50 or 60 if it comes back down say to 30 or 40 above your resting one? then back up again? I guess I would just like to take these tests, and be done for a while. Maybe learn something to feel better and get back my previous life at least a little. Anyways thank you. healing hugs to you Suzy