Poohbear

Nope, I don't have this problem. I hope you are able to get some answers from your Dr though. Do your hands change color too (like red or blue)...wondering if it may be a circulation issue as well. Some of the POTS Dr's comment on hands and feet changing color.

I am so happy for you that you were able to get in. I send my best wishes for some answers and relief to your symptoms Please keep us posted on your progress and your experience there.

During the past year I've had more trouble with nausea but unlike most of you, mine seems to be in the middle of the night or in the middle of the afternoon. It doesn't seem to be correlated to what I eat and it doesn't seem to be tied in with the migraines or migraine aura. Who knows...I'm lucky in that, for the most part, mine has been manageable and doesn't last for too long a stretch at one time.

Just wanted to offer my encouragement to you! Sounds like you are under a lot of stress. The added stress may be part of what is increasing your tachycardia as well. Maybe writing a list of things you need to do and prioritizing them could help you. I know things can feel very overwhelming at times. Just focus on one thing at a time so you can try to limit that overwhelming feeling. I hope you will be feeling much much better soon!

I'm sorry you feel bad! Take extra good care of yourself. I hope you feel better soon

I have good days and bad days but most days have symptoms (they can be to varying degrees though). I too have a lot of trouble at night like you describe. My worse episodes at night seem to be correlated to out-of-balance hormones and my cycle. Getting these more in control has helped a lot but I still have exceptionally bad episodes at night. Lately I've noticed that since I've been going to bed much later and sleep later in the morning I don't tend to have as many of these middle of the night episodes. It could be coincidence but it doesn't feel like it....it feels like there is something to this I just haven't figured it out yet or understand it.

It would be even better if you were able to get an appointment with a neuro-opthamologist. I too have trouble with vision. Mine blacks out often when changing positions where everything goes black for up to 45 seconds. Other than that I sometimes have lots of floaters that are really bad. I also have migraine and do notice a correlation with migraine and the floaters.

Keep up the fight Morgan!!! I'm sending e-vibes or e-energy or something like that (not that it really helps but just so you know my thoughts are with you) It is sad what some members of the medical community do that actually harms people. I don't know if I've shared this story with you guys or not but almost 2 years ago my mother became ill, initially went to an ER (she and my dad were traveling out of state), they didn't do much for her but sent her on her way. Within 2-3 days of that she was confused and disoriented. My dad cut the trip short and they went home. He barely got her home before she slumped over and was unconscious. Took her to the ER and they kept her for a few days. Each passing day she got worse and had really odd behavior but all of her tests came back "normal" so they sent her home. I was livid because she was acting psychotic and couldn't be left alone. A day or two later she complained of chest pain so 911 was called. She got admitted. By this point she didn't know who family or friends were. The Dr's couldn't find anything wrong with her (no evidence of stroke, heart attack, electrolytes were ok etc) so they sent her over to a psychiatric unit. Again, we were livid because my Mom had never exhibited any signs of mental illness or psychosis. This was a sudden change that developed after a severe headache. By the time they sent her to the psychiatric hospital she was even worse off and the Psychiatrist immediately said he didn't know what was wrong and although her outward behavior seemed psychotic he knew there was something physical that had caused it. He got on the phone to have her admitted to the hospital side (vs. the psychiatric unit) and she went into a coma. My mother was in a coma for 3 weeks and it was only when she slipped into a coma that the "Dr.s" were forced to realize something was really wrong. She eventually came out of this but to this day we don't know what happened. They did all kinds of tests, genetic, chemical,drug and metal testing, hair samples to try to detect any rare substance or toxic thing she may have come in contact with. Nothing showed up. At first they thought she might have the human form of mad cow but that turned up not to be the case. In the end, the Dr's said it must have been some weird virus but she never ran a fever until the time she started coming out of the coma. Her blood pressure crashed on several occasions though and she nearly died a couple of times (she's had high blood pressure all my life). It was a really scary time and who knows what might have been prevented if the Dr's had taken her and us seriously from the beginning. Anyway, it is really scary that so many in the medical community chalk things up to psychological if THEY don't have the answer. Thankfully, there are some really good Dr's out there who don't do this and I hate that they get a bad rap but so many Dr's have ego's that are WAY to HIGH!

I live alone and can very much relate to your fear. We are all different so I don't know what will work for you or what you find most helpful. I will just share some things that have helped for me. 1-If I'm anxious or have a panicky feeling and it seems to be a general fear (for example, "What if my heart starts racing, or what if...") then I try to remind myself that MANY times I am really okay. Sometimes bad things have happened but I remind myself that I've always been able to handle them. 2-If I'm having a particularly bad day I make a plan ...I need to call a friend and ask them to come over, or call a friend and tell them I'm not feeling well and ask them to please check in with me every hour or two (or whatever your need may be) just to make sure I'm okay. This helps me because I know (living alone) that someone else will know relatively quickly if I'm in trouble. 3-I also do what Roselover mentioned...keeping the items I know I need or will most likely need close by at arms reach. I now live in a smaller apartment as opposed to a 3 bedroom house but particularly on my bad days I have all my phones plugged up strategically placed so that there is a greater chance than not if I need a phone one will be easily accessible. 4-When my anxiety seems to be high yet my body is not acting up too much I then know that, for me, it's a much bigger "mental" battle (that's NOT to say it's in your head ...just means it may have to be approached differently). If watching tv doesn't help get your mind off of it then maybe you could find something else to try to take your mind off of things...write a note to someone, do some research on the internet, take a bath, play a game of solitare...something that might not require much physical stamina but yet engages your brain so that hopefully you can divert the attention away from the anxiety. I also notice that if I have a "safety" plan I feel much calmer. I keep track of what friends are in town, which are traveling on business so I know who I can call, I have a phone nearby, I try to always have some food I can just grab and eat that I don't have to prepare etc. Dr. Phil once said, don't play the "what if" game unless you are going to complete it. This has really helped me. When the "What if" statements come I make a plan and it does reduce my anxiety. Then you have to keep reminding yourself that you are going to be okay (I know this is easier said than done sometimes). Hope something here will help you!!

Has anyone on the board participated in this study??? If so, would you be willing to share your experience? I look forward to hearing more about the tests and the results. I would think if this info is accurate that the Mayo would be contacting some of us to participate in trials??!! The latest thing I saw from Mayo (Dr. Low) was a study about Mestinon but many of us have tried. Some have had success and some have not but certainly not 99%

Congratulations!!! I'm so happy for you!

Just a side note reading some other posts... I don't wish this condition on anyone but after reading some of these posts I realize I'm not the only one struggling with just basic "daily" activities. For a few months now I've gotten to the point where I just don't have the energy or stamina to take a shower every day. I even have a shower chair which helps a lot but I still can't manage every day. I live alone so most people never know or realize this about me but I've still felt embarrassed by it. It's not like I'm gross or dirty....because I lay around much and don't do anything. I guess I get discouraged sometimes over the "little" things like this and I was kinda feeling "less than" about myself but you guys made me realize I'm not the only one struggling with this kind of issue. Sorry others have to go through this but glad I'm not alone!

I'm still trying IV's at home on a more regular basis to see if I get improvement. I've heard so many people say it really helped them so I'm a little disappointed that to date, I'm not getting more relief with it. I certainly would not discourage you from trying it though. So far, it seems when I am having a crash I respond really well and get relief from the IV but if I'm having a routine, run-of-the-mill "I don't feel well day" then they don't seem to help for more than 1-2 hours. I think it's worth you trying if you are able to!

Mymommydidntloveme Morgan, Mine didn't love me either so maybe that's why my potassium drops and I pee too much during those times and my blood levels get all messed up. Seriously though....I know you are probably totally exhausted but are you able to maybe write a letter to this "psychiatrist" or to the board that liscensed him and declare below standard of care. Document your therapist (who has worked with you where this idiot has not) has established that depression is secondary to chronic illness, maybe print an article or two about POTS where it states many patients are misdiagnosed with anxiety & psychiatric illnesses to back you up. And at least demand that you not be responsible for his charge? Hope you're able to get some rest. What's next for you? Are you waiting to go to the EP to see what they say next?

I know you'll give this your best and am glad you have this opportunity! Good luck!!

Morgan---WELCOME HOME!!!! But....I'm so mad for you!!!! I was about to go to bed but now I'm so angry I don't think I can fall asleep too quick. Well, the best advice I could offer you, but I don't know if it's possible for you, is to find a good psychologist. Hear me out on this one.....this is what worked for me. I found a psychologist (it does seem that their word carries more weight in issues like this than a social worker, LPC etc) who listened to me, did her evaluation and spent several session with me. Then she wrote a letter that I demanded be placed in my permanent medical record that essentially states that while I do have some depression, anxiety and some issues I'm dealing with that all of them are secondary to my physical condition. It is my physical condition that causes heart rate fluctuation etc. I supplied her with info on POTS and she totally "got it" and has been my biggest advocate. I have had NO LUCK to date with psychiatrists but I am in search of a neuro-psych to see if this will make a difference. Just so you know, in case you need some validation, I have episodes similar to what you are describing although mine don't last as long as yours. I can have tachy in the rate of 130-150 for a day or two with no break but when I have the "seizure like activity" it usually only lasts a minute or two. I am able to hear and understand everything around me but unable to respond. I was told they are subcortical seizures and thus do not show up on EEG's. When I have really bad autonomic storms my potassium always drops and nobody has figured out why. Seems like I read in a research paper a while back the theory is that when the body is under stress it uses potassium and that might explain why, in episodes, we loose potassium. I think I would have been tempted to tell the so-called "Dr" something like, "I don't pass out intentionally, I don't get sick intentionally but there are other things I do intentionally" I would have said it with a sinister end and let his imagination run meanwhile, I would fantasize about destroying him! Hey....you should have used my earlier suggestion about collecting the packets of sugar and when he asked what you were stressed about you could have said, "Well, I'm afraid I will leave here and not even have a cup of sugar" Or...you could play with their mind..."well, I don't know Dr. What were you thinking about before you walked in this room? Did you fear maybe you don't know what you are doing? Maybe the thought occured to you that you don't even know that you don't know what you are doing? What are you stressed about? UUGGGGHHHHH!!!! Yikes!! How awful. I'm glad you survived the ordeal and are at home. PS--I've experienced the "political" stuff too. Recently the home health nurse wanted me to go to an infusion office because the home health nurses have such a hard time getting a vein and they though infusion office might be better. They wanted my Dr to write orders but my Dr wouldn't because it's a hospital close to my house but not one he has privileges at and conversely, the hospital doesn't want to acknowledge his order even though the cardiologist affiliated with their hospital all tell me they send patients like me to my Dr. It's all politics...everybody wants the money regardless of what's best for the patient or how far you have to travel to get care.

Just wanted to say you will be in my thoughts and prayers. Can you call the office where the procedure is to be done and ask them about them more about the contrast dye? Ask them what percentage have a reaction to the dye and what the most common side effects are. Also, remember, it can be complicated because some people with dysautonomia are prone to their body not responding properly so sometimes, the injection of the dye causes a response (either from the jolt of being stuck or from the anxiety) and then you have a spell but you don't know if it's from your body reacting to the stick/anxiety or if you are really reacting to the dye. Try to breathe deep, listen to music, ask someone to keep talking to you....whatever will keep you calm. Web MD might offer more explanation on the dye if you do a search for it. Good luck and I hope they find some answers for you!

I too have had this symptom. I don't know if it's related to Dysautonomia or something else. For me, this will happen frequently for a period of time and then subsides (usually for several months at a time). It comes and goes in my case. I have noticed that since doing PT I don't have this as much.

Melissa, I know you are disappointed and discouraged right now and nothing I say will make that different but I hope you can feel the (((hugs))), comfort and well-wishes being sent your way!! Unfortunately, you have to go through the emotions yourself to work through them and I know how unpleasant that is. Wish I lived close to you so I could treat you to lunch, a movie or something that would lift your spirits! I know the pain of trying to face reality and sometimes it really does bite!! I think you are doing the right thing though and I also believe that you will, in time, reach the goals you set for yourself. Hang on and treat yourself to something extra comforting and special this weekend. TTFN, Poohbear PS... "Rivers know this: there is no hurry. We shall get there some day." Winnie the Pooh

I don't know if this is an option for Morgan, but at this point, since she is in the hospital....I wonder if she can request her Dr to call the Mayo clinic and tell them they've got her in the hospital and he needs their input regarding the EP study and surgery. I am so afraid that if they do ablation she will get worse instead of better. It might be good if she could get the "experts" opinion and Mayo may take her since she's in the hospital.

Thanks for updating us! Please let her know we are thinking of her. Sounds like her experience is frustrating so far.

I'm glad you are able to get some of the help you so much need and deserve! I hope it will ease your burden and give you some peace so you don't have to deal with that kind of stress!

There is a reference to the article you are talking about on Dinets Newsletter (I believe it was the spring addition). It is interesting indeed. I don't get facial flushing but my thighs will get a red flushing frequently. About the time that research came out I was at Mayo in FL and had some allergy testing done. In the past year I've become intolerant to more and more foods and get an allergic reaction so they decided to do some allergy testing. The experience was quite odd. I had an allergic reaction to the CONTROL test so that stumped them initially. In the end the Dr. said this, in combination with some other things I was experiencing, were indications that my body was EXTREMELY sensitive (both inside and out). They determined that most of my food allergies are what they call oral allergy and not systemic (meaning, likely they will never cause a fatal reaction affecting breathing etc). They agreed I should stay away from the things that give me these reactions. The allergist said there is some kind of connection between these symptoms and what they call Mast Cell Activation Syndrome (which is not the same as Mast Cell Activation Disease). He says it's a new category and they are still trying to define within the medical community exactly what Mast cell activation is. For now, it appears my body just wants to attack anything that is new or different (not necessarily what may be "bad" for my body but just what is different). This makes sense to me and explains why meds, new foods etc cause horrible autonomic reactions. I'm finding if I take a tiny dose of a new med or a food I haven't tried in a while and slowly each day increase a little extra my body learns to tolerate it okay. I think in time they will see there is a connection in some of this with people like us

Traci, I don't want to discourage you but the Mayo in Arizona does not have an autonomic lab so they will not be able to run most of the tests you would probably want to have done to figure out what's going on with you in terms of Dysautonomia. Of course I hope you have a good experience, I just don't want you to pay all that money and be disappointed if you get there and find out they can't fully evaluate you. I ended up having to go to the other two Mayo locations.

Gwendolyn, Just a thought....if you are really shy and have difficulty discussing symptoms with your Dr, would you feel comfortable checking off a list of symptoms and maybe highlighting the top three you want to discuss with your Dr. Make a copy, keep one for yourself and take the other to the Dr for their files to review and discuss with you? You could use the following link and print off page 4 of 5 and fill this out http://www.mc.vanderbilt.edu/gcrc/ad_cente...estionnaire.PDF Good luck!