skiberthoud

thanks for this post...it made me giggle because I know exactly what you mean. This used to happen to me, too, and I wondered the same thing. sorry I have no answers for you...but i feel your pain!

Sorry to hear you are having these worrisome episodes. My episodes have some similaritis. Sometimes mine seem to happen without postural changes as well. I also experience the nausea and cramping, HR and similar BP changes. And yes, the hot flash - rip my clothes off! I haven't experienced the chest pain. I imagine that can be really disconerting. I have had the tingling, but I also get head to toe muscle twitching and tremors. My episodes seem to last 1-5 hrs. As far as answers, I have none. But you asked for stories, so know you are not alone. The inconsistancy is what I find so hard to deal with - and I hate being constantly in tune with how my body feels. I hope you are able to find some reassurance and peace. Take care of yourself...

Hi Sue1234 - thanks for the interesting subject. Sorry to digress from the discussion, but I noticed you mentioned a change in your urine color - just made "porphyria" come to mind...don't know if it fits but had to throw it out there

If you go to any Durable Medical Equipment company or pharmacy (one that sells DME) then you will be able to find one. They are not the same as the back support and they are a different material than a body shaper. Invacare is just an example of one company that makes them. They run about $20-30...fyi.

I think that if you are nervous you should get it checked. Take as much stress out the situation as you can! and I hope you have great trip...keep us posted

Communication is key to any sucessful relationship. If there can't be honest, open communication, a healthy relationship can not last. That means that "expectations" need to be discussed openly. We all have expectations of the other person, but very rarely do we tell them. There is a wise proverb that says, "Expectation postoned is making the heart sick." My husband and I had a long distance relationship (we were friends and then i moved and realized i missed him too much...) and while it can be hard, it can work as long as you openly communicate, about everything! I hope the best for you. I hope you find peace in whatever decision you make!

I can add a little. My neurologist, although I am firing him shortly, also has done/ is doing much testing to try to find an underlying cause. He did the usual autonomic testing, LP to check CSF, EEG and is sending me for neuropsych testing to see if my history of concussions/whiplash injuries is factoring in. I hope that if you choose to see a neurologist it is a good experience for you!

TLC's Mom, unfortunately I don't have anything to help. I just wanted to tell you that I'm so sorry that you and your daughter are dealing with this. I understand the frustration on a personal level - I can't imagine it if it was one of my children. Your daughter is very fortunate to have an attentive mom like you! Keep up the fight! There are many moms here that will have a wealth of information and support for you! I hope and pray that you are able to find some help and relief for your daughter. Is Mayo an option for you?

So sorry you're crashing, and sorry for all that stress that precipitated this dreaded event. Just remember that this, too, shall pass. Unfortunately it stinks when you're in the midst of it. I will tell you that I have also had an increase of symptoms (not a full fledged crash) after an adjustment. That's not the usual for me, though, but it has happened. Sounds like Ashelton80 is a good resource on this subject. Mack's mom brought up the valuable point of water. Definately a good idea. Any time tissue is manipulated it can have a dehydrating effect on the tissue. Also, anytime tissue is manipulated, waste/toxins can be released. Water is then our friend to both rehydrate and help wash that waste away. I hope you are feeling better soon...and maybe you can find an Atlas Orthognal chiro closer than four hours from you! (Ouch, Ashelton80, that's a drive!...I guess it's feast or famine because I have two within a half hour from me...haven't tried them yet)

Elizabeth - thank you so much for your reply! I really appreciate it! I hate just picking a name out of a book....

Hey all you fellow New Englanders. I need to find an endocrinologist and I hate just picking a name out of a hat. Any suggestions for me? Who do you see and why do you like them?? Thanks so much for all your help!

I've always been a fairly low maintenance girl. However, yes, unfortunately I've even become even more low maintenance. I know I don't have quite as many limitations as many of you, but I have gone from being someone who was up, showered, dressed and out the door, kids in tow, first thing in the am. Now sometimes I'm making lunch and have to remind myself I haven't showered or dressed yet. Last year I wouldn't dream of dropping my daughter off at school without being showered and dressed, even though I didn't get out of the car. HA! How things change! I still try to put make-up on if I'm going out and actually getting out of the car. My tip is following Carmindy's 5 minute face! Makes all the difference in the world and it doesn't even have to take the whole 5 mins (depending on the day)! That's my tip. Love her website!

Thank you, Nowwhat! I appreciate you sharing that with me!

Thanks, Issie. That's sound, logical reasoning to me. I know that no matter how hard we try, perfect health is unattainable at present. I look forward to seeing what perfect health feels like in the paradise soon to come. And Lieze, I do believe that a lot of our problems are caused by our environment and some of the poor choices we have made as humans (both as a whole and as individuals). I think there is a correlation between immunity and our issues. Even though, looking back over my life, I seemed to have little hints/symptoms since I was a kid, it wasn't until a virus last winter that my symptoms got really bad. I also really believe in the "rain barrel" effect. Once the barrel is full it overflows. Between ignored food and environmental allergies, years of lack of sleep, increased external and internal stress, a rotten environment...your body can only handle so much. But yes, there is hope, and that's what keeps us going!

Food - my nemesis! It can be very overwhelming to try to figure the whole food thing out, especially when you feel lousy and you have family, work, an/or whatever other things eat up your time and energy. I have always had mild food allergies and for the most part have ignored them. I've always know this was a bad idea, but nothing made me sick enough to want to change things. I will tell you that twice I have done elimination diets and those have been the times in my life that I've felt the best. Of course, one of them was actually done for the sake of my breast feeding infant who was riddled with allergies and reacted to what I ate, so I didn't pay too much attn to me when adding foods back in. The second time i didn't really want to face the music because I felt so good and it took a long time to get back to feeling "not so good." I also have to tell you that this was before I had my onset of major pots symptoms. I am planning on having a food panel done in the next month or two (once school starts and i have perhaps a little more time and brain power to devout to myself). This is what I figure: don't know if foods are contributing to my symptoms outright. What i do know is that when you have foods your body is allergic to it creates an immune reaction. Why add fuel to the fire. Staying away from foods that you are sensitive or allergic to can only help. As to how much they effect other symptoms...i'll let you know! I just want to do my part to help myself feel as good as possible. Thanks for bringing up this fun topic!

Thanks, everyone, for your support. Even if I don't belong here I want to stay because there's such a great and interesting cross-section of people here! So much knowledge! Most have you have so much life experience to share! KeXia - an immune mediated disease is one that occurs from an abornmal immune response - typically with your immune system over-reacting. Potsgirl - funny thing is that I did see someone recommended on the website's list. I like him, but I get the feeling from him he's limited in his interests and if you don't fall into his box he's not too interested. I could be wrong...we shall see. As far as traveling to another clinic...I'm not sure how I feel about it. At this point I'm not sure I "need" a definate diagnosis mentally. I'm curious to hear your opinion on that. This is my take: I'm going to work with my PCP, who so far has proved very helpful, to get me as healthy as possible. I figure that if we rule most other things out and work on improving my immune system, adrenals, etc... and I can get to a point where I'm consistantly functional then I will be happy. I think I can be ok assuming i'm pots positive. What do you think? Do you feel that it is very helpful to have the official diagnosis? This is open to anyone's comments. I'd love to hear some personal opinions...

When I called for an appt with neuro they said his first available appt was in jan 2011 (this was last month). So my pcp called the neuro and i had an appt within 10 days. Just a thought. May or may not be helpful for your situation. I hope things turn out well...

Sue1234, as far as the Bentyl...it does seem to be opposite inpact on acetylcholine and it's receptors as mestinon. I also see, however, that it's used to treat a variety of issues that are also related to your ANS (parkinsons for instance). I've seen others on this forum that have/ do take Bentyl...maybe they'll have some good input for you. As far as the mestinon, it has helped with my other GI issues. I was vomitting almost daily before, and now it's only occasionally. I didn't really have constipation, per say, but I did have abdominal discomfort and the feeling that I needed to have a bm all the time (even if i had just had one) and those feelings also went away. For awhile I questioned if the mestinon was really what was making it better so i titrated down my dose and all the unpleasantries returned. Of course, that's just how I react to that medication. We're obviously not all the same.

sue1234, I'm so sorry you are so frustrated. I don't know that I can be of much help. I also had that bad bloating...painful and like i was going to burst at any moment. I know how miserable it is. I'm glad you were able to find relief before and I hope you can again soon. For me I know there are certain foods that make it worse - I don't know if you've found that true for you as well. My neuro tried me on mestinon and i can't believe how much it relieves my bloating. even though it doesn't help with all my symptoms, just to have it help with the bloating is so worth it. I'm so sorry...I hope you find someone to listen and act on what they hear for your benefit!

Thank you all for your replies. flop - I don't have the numbers from the test. I asked him to send them to my PCP and she will email them to me. Should have just asked when I was there, but I was a little overwhelmed when he told me that my heart was just reacting like a deconditioned heart or an anxious one. Anyway, what he told me was that my HR supine was 70 and that it went up to the 120's right after being tilted. He said it then went down and came back up and it did that a few times, as if i was just nervous. But since by the end of my time up it was back down to normal then it isn't pots...he said that my HR would have started lower and continued to climb and would be higher at the end of the test. He told me my BP was "fine" the whole time. I am curious to see for myself because things were pretty blurry and spinning when I got tilted - good thing for being strapped in! i do check my bp daily and it's consistantly inconsistant. i'm usually around 118/68 supine and then standing sometimes i drop to 109/60 and sometimes i go up to 145/90-110. chaos - thanks for your experience. funny, i did go to a dysautonomic specialist that was highly recommended. It was all very quick - qsart, val salva, deep breathing test, crainial dopplar for blood flow, skin biopsies and TTT - in and out in an hour. The TTT was 10 min sup and 10 min tilted. issie - you're right. I agree. I am glad for no neuropathies. I haven't really been tested for much of anything. I went to my PCP about this in June (at that time i wasn't having daily symptoms - just big episodes) and she did your typical blood work and 2 24 hr urines and the plasma blood test to rule out a pheo. Shortly thereafter I started having daily issues, and my GI issues involved lots of nausa and vomitting, constant bloating and the feeling of needing to have a BM ALL the time, even if i just had one...so off to a GI specialist i went. She saw me for maybe 10 minutes, said "I think you have pots - go get a tilt table test," did a blood test for celiac (neg) and off to the dysautonomic specialist I went. So yes, the journey is just beginning. I do have an excellent PCP and we're going to pow-wow. Thanks for the tip on looking for an electrophysiologist. And yes, I will be getting all my records. I'm beginning to see how important that is. I have to say that I am feeling much better about it today. Honestly, nothing has changed except that I have the positive news of no nerve damage. And the sun is shining today!

So I had my autonomic testing today. Where to begin? Ok, last month I saw this neurologist for the first time and he said he very strongly felt I had immune mediated dysautonomia so he set up testing and started me on mestinon. I noticed positive results from the mestinon right away, but it cerainly didn't stop all my symptoms. So the sweat test determined that i "sweat like a man," 3x more than the normal woman. He was just happy that i was sweating. Nothing else was abnormal. Of course, there was the TTT...my HR went up 50+ beats at first then kept oscillating up and down and eventually by the end of the 10 mins was back down to its orignal rate. Therefore I was told that i have no nerve damage (he said it would only be an issue if it went up during the 10 mins, not from the beginning). OK, so this is good news, but i don't understand...what's wrong with me. Does that mean that I don't have dysautonomia? What's with the tachy that is a daily occurance? The nausa, vomitting, other GI issues (which by the way are virtually gone will taking the mestinon), dizziness, full body tremors...that's all what? So I left there upset with no answers and no where to go next. I thought I had finally figured out where I "fit." Oh well...I will keep living each day like I do and enjoy them. I keep saying that an illness doesn't define the person and I guess that's a good thing becuase I can't even define the illness! I will be following up with my PCP in a couple of weeks - we'll see where we'll go from here. Any thoughts for me would be appreciated! You all seem to have a wealth of knowlege and experience and I'd love to draw from that....Thank You!

Sue1234 - didn't read your post yesterday, but I'll go back to look at it. Have you tried hydrating more in morning? Any sucess? I just thought of it this morning and hope I remember tomorrow to try to see if this theory is valid...

Same thing here. Getting up and making my bed will put my HR in the 150's (without moving fast). I'm always much more tachy in the morning. I have a new theory I'm going to try out. I'm wondering if it's because I "dehydrate" at night and as the day goes on I "rehydrate." I'm going to try drinking before getting up in the morning and see if there is a difference. Don't know, but it's worth a try. Curious if others have found things that help. I'm just glad that my heart gets happier as the goes on

Welcome! I'm sure you will be able to find hope and help from this forum. I commend you for your positive attitude. I agree that it is entirely helpful! Being negative helps nothing. I hope you are able to find a doctor who is knowlegable and helpful and that you are able to find things that help you maintain the best quality of life possible - your attitude will do much for that! Keep that bike there - it defines you more than your "illness."

Well, first I don't have a formal POTS dx yet (my AFT is this week!) but yes, lots of vomitting here. I always have vomitting during my "bad episodes." Earlier this summer the nausa and vomitting was a daily occurance for me...always with food and sometimes otherwise. I also had lots of gurgling, bloating and discomfort. My neuro put me on medication which has significantly reduced those issues for me. I still have nausa daily but the vomitting, bloating and discomft are only reserved for really bad days. I tried papaya (tablets) to help with the bloating, but it didn't really do much for me, but it might be worth a try. Sorry you are dealing with this. It can be pretty miserable. Know you are not alone in the green zone...my sympathies