ajw4790

Hi, When I first read your post I was thinking costochondritis. Google it to see if it sounds like a possibility. You can also do a search here on the forum, because that has been discussed some before. I don't personally have that pain, so I am not of much help. Sorry.

Hi again! Thanks for your replies! I am glad I am not alone! (although it stinks that others have it as well!) Mine was noticed on my arms. I think it is all over the majority of my arms, my legs (worst on thighs and behind knees), maybe feet? not sure with pooling etc., and I do think now that I paid more attention I have it on my abdomen as well. Most of it is hardly noticible, but it is there constantly. But, what is on my thighs and knees is the worst and very obvious. I am still trying to figure out if this has much significance for myself??? Who knows.

Julie, Hi, I did find in mentioned in a couple of threads, but it was mainly the same couple of people that posted. Also, everyones post I read still have it at the stage that it comes and goes. Mine is there constantly in some form. It does wax and wane though... One of neuros picked up on it. He was always staring at my arms, and I would ask him what he was looking at, but he never actually talked to me about it. I had to get the info. from his dictated note in my medical records I just picked up. I have never noticed it on my stomach, but that doesn't mean anything...

Hi! I have recently been diagnosed with having livedo reticularis (along with everything else! ). I was curious if anyone else had been diagnosed with it??? I did a search of the forum on it and did not find much mention of it. It has to do with vasodilation and vasoconstriction, so I figured that a few people with EDS etc. may have it??? Also, for those who have it- does it come and go or is it present year round, cold or not? Thanks!

Hi, I wondered why you chose those two meds over the more commonly used anti-depressants used in dysautonomia treatment? Not that those meds are not used, but they are not used as often. What about Zoloft, Cymbalta, Lexapro etc? I think they have less side effects and are easier to wean on and off of for most people. Just wondering...

Hi, If you are getting the TTT in the cardio. department, it is probably the sitting TTT that I described in my previous thread/posts. I didn't have a stress echo. I had my 2nd QSART (CC) in the neuro dept., it wasn't bad, but this one hurt worse than the previous I one I had. the blood volume one, I also talked about before. You just lay there very still and they inject you with the dye that tags the red blood cells, and it is recorded by the gamma camera type machine. I am not sure, but I think the heart rate variability test is one of the breathing tests. Just make sure to follow fasting etc. directions. Bring plenty of fluids/after testing foods. Have meds to take after if able to. Plan to go right back to hotel room after testing. I was light, motion, smell, and noise sensitive after my day of testing. As I said before the injections etc were not too bad, except for after the first couple it started to like bruise the vein for me, and everytime they did the rapid injection it hurt like crazy, but was done after the injection was over. It was better when the other nurse put pressure on the vein during injection. The worst was just laying so still for so long. It hurt my back... but that it is much more of a personal thing. Not sure what else infowise I can offer...? Hope that helps!

Hi, I agree with what everyone else has said. The acid symptoms does sound a lot like GERD/reflux. If you haven't already discussed this with your dr, try and do so. You could possibly try treating it with medication. For the sleep stuff, it does sound semi-similiar. I know some meds for me cause more vivid and weird dreams (and before I don't even remember dreaming...).

Ernie, I hope that next week you can get some answers! If they are not real cooperative maybe you can ask to see if they would be available after the study, if the results can be discussed verbally to you (if they won't give you a copy), why they said it would be available and now is not (which would be against your signed informed consent to be a subject-can make your results invalid, if you signed under other circumstances than the ones they are claiming). There are strict rules if they go against the informed consent/protocol you signed then your results are invalid and they could potentially lose the study, grant money, be fined etc... Hopefully once you are able to talk to someone "in charge" things will be straightened out!!!

Hi, All the different breathing tests or having to take many deep breaths etc. tend to all cause an increase in symptoms for me. I haven't had a PFT etc. but it would probably be normal. It is not the pulmonary system that is misfiring/causing the issue it is the ANS.

Hi, For me it depends if I was fasting/dehydrated etc. if I was I will feel a lot worse. Sometimes it is not all that big of a deal. I do think somewhere from a dr or something I did hear about you can get a negative autonomic response from a blood draw, due to it is invoking a stressor on your system. I think most importantly is to prepare for the test by making sure you have ate and are hydrated. Then, try to not worry or stress about it because it will only make it worse. I wonder if because it was performed at work you were more apprehensive about the blood draw and what it may do? It may not have even been a conscious thing. But, who wants to have a bad reaction at work? I would feel better having a bad reaction at a drs office, so they can see my response, and I probably don't really know anyone there! Also, even though it was less blood remember that our symptoms/reactions change on a daily basis due to a multitude of factors (hormones, hydration, glucose level, weather, etc....) So, it may have just not been the best day to have any blood drawn...

Hi, I am not sure of all the causes of facial flushing, although I do believe there are many. The differ though in where the redness occurs, for how long, how quick came on, what you were doing (cause of flushing), hives present, itchy rash... etc... So, not all is necesarily MCAD with POTS, but for some people it may be a cause. Other things to look at are stress, allergies, strong emotional response, adrenaline surge etc... I am not entirely sure of the cause and what you actually define it as, but I have known people (I can think of one professor in general) that I noticed that flushed frequently with a rashy, almost hive-like flush over all of her face, neck, and upper chest. She would get it immediately upon standing up in front of our class of 40 people. It was a daily thing... if she was teaching, she had this flushed/rashy thing going on. She has been a professor for a while, and did this even after knowing us a couple years. But, I do think it was related to anxiety and an adrenaline response to being up there in front of us teaching. So, I could see where people with dysautonomia could have a like reaction with adrenaline surges and increased anxiety(from surge and other symptoms) etc. Not sure if my rambling helps?

Hi, I do believe that with many people you can have the initial drop in BP (syncope) and then as a compensatory mechanism the BP shoots up in an attempt to "fix" the situation. It may "overshoot" above your norm for a little while until things even out again.

Ernie, Hi! I had wondered if you had heard anything yet from your Mayo adventures. I did not realize (or remember) that you were going as a research patient. That is awful that you are having such a hard time getting your results from all of the testing. I hope that soon you will get them to release the results. I am not familiar with the rules with all of this. It does make sense though that you have the right to your medical file. Not sure if that helps you though. Have you discussed the matter directly with the drs. you saw or the nurse of those drs. I have had a lot of difficulty with getting around receptionists at times, and they tend to have no clue! They just spit out the script of info that they are taught to say. I hope that someone soon will listen and understand how important this is and help you! Do they say that you will be able to get the info after the research is over? To travel all that way, and for this to happen... I am speechless... I am SOOO sorry!!!

Hi, I wish it had gone better for you! Maybe as frustrating as it is you may have to take even smaller baby steps to be able to get outside and do that kind of strenous work. Between the up and down and valsalva manuever making things worse when you do things like pull stubborn weeds or pick up anything semi-heavy. Does not sound fun! I know in retrospect have come to realize that this is why so many activities such as this were always not apealing to me. I too am frustrated that the weather is nice and I don't have any energy etc. I felt bad this morning a laid down for a nap, which ended up being- well not a nap! I slept all day, woke up once or twice, super groggy- falling all over the place, and bad pain in my abdomen that made it hard to move. I just wanted to go grocery shopping! Urrgghhh!!!! Hopefully you will be able to give it another try soon! Take small baby steps and work your way up. Try to modify what you would normally do to conserve energy and avoid a lot of position changes etc. Keep hydrated and take a lot of breaks.

Hi! Welcome! Hope that you find a good specialist soon to give you more answers!

Hi, Thanks for sharing! This is interesting... I think this would to me. I did FINALLY get a script for a sleep study. So we shall see! I thought that the most interesting was that on some of my latest test results they used the terminology- impaired symathovagal balance. Interesting....

Hi! Wow! Congratulations! I am glad that taking the chance to see him again paid off in your favor!!! I hope this leads to more answers in the near future, AND better treatment! Because it sounds like the previous was about the worst that they could prescribe! That is awful that everything was just making you sicker! Jeez!!! Hope that this leads to appropriate treatment in the very near future!!!

Hi! Welcome! Sounds like you have been through so much! But, luckily it sounds like you came across a good dr that was able to give you a POTS diagnosis. Which is a good start, but if he was the one that just made it sound like a kidney stone and that it will just pass, it will probably be a good idea to find a specialist. I am not real familiar with FL, but there is Mayo Clinic at Jacksonville that I have heard of people going to. Also, you can look on DINET's website for other drs in FL. With your medical history you may end up finding that you may have to travel a ways to someone that is very familiar with dysautonomia, like Dr. Grubb in Toledo, Vandy, Mayo, or Cleveland Clinic. I also would say that for you you may find the most help with a neurologist and not a cardiologist. Not to say don't see a cardiologist- do see one. But, I think a good neuro. may be the most helpful. It sounds like what you are experiencing in due to the neuropathy caused by Guillian- Barre. POTS can be caused by small fiber neuropathy that affects sensory and autonomic systems. So, finding out more about the current state of the neuropathy and what all it is affecting may be the most helpful. But I am not a dr... Hope that helps! I am foggy brained at the moment....

Hi, I looked up internal tremors some. It looks like they can be caused by may things, including being a form of Essential Tremor. Other causes include low blood sugar, hormone imbalances, thyroid problems etc. Don't know if that helps any?

Hi, I wonder if it is caused by potassium supplementation, or an overall electrolyte imbalance? If you have not had recent blood tests it may be something to look into. Hope you get to feeling better soon!

Hi, Thanks for ya'lls replies. I do think that the numbers should show something... I also looked back at a GTT I had 4-5 years ago and my glucose #'s were like 83, 124, 74. They are a lot different now!!! Oh, and I did call and got the endo. to call me back and asked her how it was normal etc. And she just described that it was a normal response for someone my age... blah, blah, blah... She did say though that it would not be inconsistent with reactive hypoglycemia, if I continued to have a lot of low blood sugar readings. I don't know... They are not helpful. And she didn't see any problem with the insulin levels... As far as the fibromyalgia... I don't think it is anything I am going to pursue now. I was just curious of others experiences...

Hi, I have an Essential Tremor that I treat with Primidone- BB's did not work for me. I have had this since I was very young... 10 years old or so. It also runs in my family. Also, for those who experience these tremors on and off and are worsened by orthostatic stress, there is a type of tremor called Orthostatic Tremor. I also get this and it is different from my ET. When I get OT my legs are VERY trembly, and I look insanely nervous.

Hi, I got more of my results back. It does say that I have normal blood pressure while supine, but that there is supine hyperkinetic circulation. Also, there was borderline supine venous pooling... So, for one I don't understand how you can have all three of these... it seems counterintuitive... ????? Also, I know that for me lying down does not solve everything... I guess this is why. But, it seems odd to have so many abnormalities SUPINE, when I thought that we were supposed to be more sensitive to upright postures...????? I guess this may also be part of my problem with sleep... I wonder if there is ANY good postition to be in? (if not supine, sitting, or standing... maybe I need to hang upside down like a bat??? ) Anyone else have so many issues supine???

Hi, Sorry I really don't have any answers or insights. I personally don't have this kind of problem. Has your meds changed? I know when I am on Neurontin etc. it can sometimes dull the cramps, so it sneaks up on me as it wears off. I think with endometriosis that things can be very irregular and change constantly. I think a lot of it depends on where the tissue that "escapes" (for a lack of a better word right now ) goes and how it attaches to whatever etc... For that the best way to find info would probably be to google it and maybe even find a forum/support group that can halp answer your questions. I hope it gets better soon, because it sounds miserable!!!

Oh, my! That must have been scary! I am glad that you were in such good hands and that everything has turned out well. I have not heard of anyone having a stroke before during a TTT, but it makes sense that if you are stressing the body so much, and you have a disease that predisposes you to this kind of event that this could occur. I would think that it is more likely that for you POTS is brought on or worsened by the small vessel disease, and not that POTS/dysautonomia makes you more prone to small vessel disease. Hopefully now that you have this extra information and what sounds like great drs. that you will find some helpful treatment!