ajw4790

Hi, Yes, I saw a specific neurologist (PM for name if interested ), and he ordered these tests in both labs. I would not discourage anyone from going there. Overall, I thought it was worth it and that the tests accurrately displayed my "normal symptoms" in regards to what they were testing. I do not think that doing both TTT are necessarily "normal" protocol, because they had to call and check that it was his intentions to do both. I did not get the full cardio workup, so if you go there under cardiology to the syncope clinic I think the experience is slightly different. The tests I got in the cardio department are part of what they "normally" do (I believe). I feel that the drs, nurses, techincians etc. there are much more caring and A LOT more knowledgeable than other places that I have been. I was very impressed by the different tasks in different genres of medicine that the techs and nurses were able to do (they were doing/reading blood tests, performing the tests, proficient in using IV's and administering drugs, using the machinery, and noting and doing minimal analysis of the data (reading EKG strips etc).) I am interested if it sheds any light on anything that I did not already know, or I guess if not it backs up the previous diagnoses. Any questions just ask!

Hi everyone! Welcome out there to all the new people! Many of you sound quite similar to me. I will try to answer more of your specific posts later. I know that some people had said they wanted to know how my testing went, and it was just kind of different in general so I thought I would share. I spent a long day doing testing at Cleveland. I was in the Neuro. ANS lab for the morning and in the cardio. lab in the afternoon. (I did learn that at least part of the lab is called the Syncope Lab- someone had asked me if I was going there and I was not sure...) I did not get to see my dr. which I was told before I would, so that was frustrating. Also, I did not recieve everything in the mail and what I did not tell the whole accurate picture, so I was not really prepared for everything that I walked into. But, all in all I think it went well, and I really did learn that different hospitals/labs and drs do these tests quite differently. It is actually pretty amazing that there is such a difference. Going into the testing I already had a lot of tests done before including a TTT and QSART. They both were positive before as well and I was diagnosed with POTS and Small Fiber Neuropathy. I really did question going into the testing do I really need another TTT? Another QSART? The previous ones were about 1.5-2 years ago, so some time has passed. Also, this time I was ONLY off of my BB (Atenolol), and still on Cymbalta, Zoloft, Primidone, Neurontin etc. So, I wasn't sure how symptomatic I would be still on all these meds, and I don't really ever feel the BB does much for me, and I did not miss it these days I did not take it (except for during testing!!! ) So, I ended up having a QSART (which was done quite different than my previous one- I think this one was more in depth and "old school"). Then, I did the deep breathing and Valsalva tests (these were not too bad). Then I had the neuro. TTT. I had a neuro. TTT before. I thought they were both quite different, and my overall responses to them I felt was different as well. They only tilted to 60 degrees which felt weird, I was tilted to 70 degrees at least before. They also did not strap me in well. I did not feel like I was fighting gravity as much in this position. I think my BP was relatively stable at a normal measurement. My HR I think increased significantly (30+ bpm), but I do not think it went too high or as high as my previous test. I snuck a peek at the numbers they wrote down, but I do not have the results yet. They had what I think was a resident in there to supervise in case things got dicey (made me feel better ) The dr. said something like the analysis hasn't been done yet so I can't tell you the results, but we can see why you do not feel well when you stand. (this is while I am still on TT) I thought it was nice to have a dr. look at me so seriously and say something like that- that they can see with their own two eyes why things like this make me symptomatic! She was someone that I thought- Wow! I would like her to be my dr! She also described scientific processes well, by breaking it down and talking about cells like they were "characters" and added comedy to it. It was refreshing to see a dr. with GREAT bedside manner!!! In cardio. I had the blood volume test and ANOTHER TTT! (Yes, TWO TTT ) I was not ready for two TTT! The second though proved to be much different. It was a SITTING TTT. I stupidly thought sitting- that can't be too bad! (and they acted like standing no problem- this shouldn't be too bad). Not true! The blood volume part wasn't too bad- the IV started getting really painful when they were pushing all the meds in quickly. Didn't like having to lay still with nothing under my knees- my back kept spasming. Then for the Hemodynamic TTT they injected the radioactive tracer, sat me up to 60 degrees and let my legs "dangle" off the bed. First few minutes were not too bad, lightheaded, foggy, getting a little overheated, the WHOOSH all of a sudden I am burning up, felt I was going to puke everywhere, head spinning, very foggy feeling, very uncomfortable, and because of the test you have to stay still- I just wanted to get up and writh in "pain" and nausousness. I also was working on a migraine! It did not help the EKG machine was beeping like nuts- I was thinking, like what the HECK- I was just SITTING there! Is this for real!? Sitting makes me feel like this? After I started getting pretty bad and the monitor was going off they lowered my head (I think past "normal") and put my legs back up. Then they stood down there holding my legs up for like 5 minutes as I tried to return to normal. I know my HR shot up- not sure how much. But, the really cruddy feeling I think came from my BP decreasing quite fast- not too low (I've had lower and up and moving around), but it went from the 120/80 (ish) to 90/50 within a short amount of time. That was just NUTS! Then, I won't bore ya more, but I felt like crap the rest of the night and got so sensitive to all light, smell, movement, everything... it was pretty bad! Not fun at all!!! But, I made it back in one piece, so WAHOO!!! Sorry about my chattiness!!!

Hi, I think this is a difficult one. I think for drs. they are not even sure of the best way. It totally depends on the individual and what there age, diagnoses are etc... But, I think the starting point is realizing that the assessments for "normal" people will not be an accurate or appropriate way to test us. For us our ANS is out of whack, SO the measurements that are used to assess fitness are those controlled by the ANS. So, the results are not dependable. So, I think it is really hard to tell. I think the best way is to go back to the thought process brought up by the article Low et al. describing quality of life is comparable to those with CHF or COPD. I didn't go back to look at the article, but do they use any assessments in their research that would be applicable? So, my thought is that you could maybe use the fitness tests that are used with these populations to assess our fitness level. For example something like the six-minute walk test may be appropriate. Then, compare it to the charts like you would for people with CHF/COPD and not necesarily "normal" people. I would have to go back and look to see how this would or would not actually work. But, I think to do a sub max fitness test is appropriate, but then assess it as if we were a CHF/COPD patient. Does that make sense? My thoughts are really struggling right now!

Hi, All the Polar ones (I believe) have the chest strap. I have both a Polar and a Mio (no strap-press fingers on two sensors when want a reading). I didn't like the Mio at all, but it was a cheap one. Plus much why I didn't like it was due to my tremor and neuropathy, so different for others. The Polar is okay, I don't wear it much. I don't like the way it seems to irritate my skin. I think I just have to figure out how to best wear it for me... Try a search of the board for a lot of previous discussions on this topic.

Sophia, Ya sound like me chapstick everywhere! My lips are always very chapped. I am not on Florinef or DDAVP. I also have aproblem with I drink so much and I don't like eating the chapstick, to find a balance between being able to use it and not having to taste it everytime you go for a drink.

Hi, I wanted to share this article that seems to suggest a link between a high resting heart rate and risk for heart attack/heart disease. This is a link to an article about the study. In my few minutes attempting to find the study online I was unsuccessful. Maybe one of the great researchers out there will be able to find a copy of the article? I am interested in more of the details and how this may or may not pertain to POTS etc. Just thought I would share! http://www.associatedcontent.com/article/1...isk.html?cat=70

Hi, You can do a search on electrolyte packets on the forum for previous discussions. My favorite is Electromix packets the are Lemon Lime with no sugar, but also have no salt (you can add your own). I like the no sugar aspect, the flavor, and it has helped many migraines and rough days for me. Gatorade comes in packet form. Beware many of the packets have artificial sweeteners, so if you don't tolerate them you have to read the ingredient lists.

Hi! Thanks again for the replies! I like the idea of calling to find a dr that specializes in something non-blood sugar related, so hopefully they have a wider knowledge base (or willing to go outside the diabetes realm). I did get my endo. blood tests in the mail. It was bare minimum info, but it said that it was all normal. So that is good. I will have to look them over better later, but they looked like they probably actually were normal. (Don't always trust those drs!) I also want to thank those who have PM'ed me dr. ideas! They have been great! I am always very open and welcome ideas! I am supposed to be being referred to a Rheumatologist, Dermatologist, and Allergist, but I have not heard anything in regards to actually getting referred to them. I also need to find an new PCP... CRAZY! Then the one dr. was talking cardiac rehab... more appmts! And I still need to go get a couple x-rays... it never ends!!! I am also supposed to be getting in to see Dr. Grubb. Jeez... mdcountrygirl, I am not sure what the syncope clinic is? Is that cardio? I see an ANS neurologist at CC. I had my first appmt with him in January and am returning for testing. I am having another TTT (hemodynamic-guess it looks at blood pooling) in the cardio department and then various ANS tests in the ANS lab including another QSART, pupil test, valsalva, etc. I have not seen anyone at CC in cardiology. Thanks everybody!!!

Hi! Thank you all for your responses! Welcome to those who I have not said "Welcome" to yet! Thanks Jenn! Your post was funny! It made me laugh! Katja, Thanks for the info! I will have to look at the link! Sounds interesting and like it may pertain to me. I have lost pretty much all the hair on the sides and back of lower leg and just about all of the thigh. But, what confuses the drs. is that I still have hair on my toes. Lets see... I was going to mention a few other things, what were they? Oh, yeah to add to the nice week I got the card in the mail Fri. telling me that I have been driving on an expired license since Jan 1! Whoops! I didn't know it expired this year. Honestly it has been the furthest thing from my mind. So, I had to pry myself out of bed, to find they close at noon- less than an hour. Rush to get there... Complete that... Had to write check. No money in bank, rush to bank to get money in before check bounces. Bank is in front of grocery store, so decide I need to get my meds and some groceries. So, did all that with minimal fluids, not eating, and not yet taken my meds. Jeez, that was interesting! I also saw one of my neuros last week that wasn't too bad. I didn't get much help, but I felt for once she kinda listened. Also, she has started to talk about POTS like she now may actually understand it somewhat!!! She was talking about Toledo, papers published, and Dr. Grubb. Before she had no clue, so I actually was impressed. She said she also has another patient with POTS. Other than that she agreed after next weeks testing to try and increase the Cymbalta. She also in her round about way indicated that there MAY be cardiac rehab's in the area familiar with POTS that I may need to look into. So, at least that appmt. wasn't so bad. I have testing in Cleveland this week. We shall see how that goes! Thanks everybody!!!

Hi everyone!!! I haven't written/responded a lot recently due to being busy and semi-fed up with all things medical (I think many of ya'll know what I mean ). But, I had some questions etc. so I thought I would post. Hopefully later I will be able to go back through to respond to others, there have been many interesting posts etc. I am thinking about trying the tumeric! Sounds interesting! Question: Does anyone else always have brisk reflexes during a neurological exam? I do, and have for as long as I remember. It seems to always suprise the neurologists, but I don't think that they see it as a problem or that it means anything. I am not sure that it really means anything either (not worried about it), but I wondered if many of us have brisk reflexes or if it is just good ole' quirky me??? Question: I know I have asked before, but there are more new people, and I am still trying to find answers. Does anyone else have PATCHY hair loss and sensory loss??? Not in the "normal" glove and stocking pattern. Neurologists say it is NOT part of the small fiber neuropathy, and that it is probably endocrine or autoimmune. Endocrinology says that it does not look endocrine and all my tests are normal. I have not seen a rheumy in a while, but FINALLY (I think) have a referral to one. (Man, that was difficult, they do not refer to rheumatology easily here at all!) When searching online the only thing that I have found that would fit diagnosis wise with the patchy hair loss is hypopituitaryism. I asked endo, and they said that all my tests do not show that. I also saw on Mystery Diagnosis (I know it is not the most accurate source!) a young adult that had many of the same symptoms, fainted, slept all the time, patchy hair loss on legs etc. But, endo. thinks I am crazy when I ask about it. Does anyone have hypopituitaryism? Or anyone know any other causes of this type of patchy hair and sensory loss? Okay, my rant!!! So, I saw my endo. I have been pretty much told by all other drs. that endo. is my last shot to get answers. So, I really want them to take me seriously and listen, and try to reason out what may be going on. But, instead they (yes, THEY... I see a fellow who is overseen by a resident- so, I have to deal with both! ) When I got referred to this endo. the dr. wrote the referral to investigate hypoglycemia. So, that has been the focus... which is fine, but they won't look at the whole picture. They are super focused on blood sugar, and refuse to pretty much discuss or look at anything else. They have somewhat looked elsewhere, but it was like pulling teeth to do so! So, the last time they tell me that it is my fault and the ball is in my court, because I don't have an extensive log of my blood sugar to either rule it in or out as a problem. So, once they decide whether or not it is a problem, THEN they can look at other things (they say ). Until, then pretty much everything is BS... (blood sugar or ya' know ). They are so linear thinking it is SUPER frustrating, for them it has to be referred for "A", so work on "A", rule "A" in/out, and then move on to "B". I mean do they realize "A" and "B" just might be connected??? To make things more frustrating the thing is my hypoglycemia problems have leveled off and have been pretty non-existant since being on Cymbalta. So, I have NOT been having issues with hypoglycemia. SO, I have not been testing it, because why poke myself when I am not symptomatic??? It puzzles me because most drs. would look at you like you were absolutely NUTS if you continued to "dwell" on blood sugar if you were not symptomatic, they would just brush it off, and say that's great, and move on. I mean why waste time on something that is not an issue right now? I mean, most of the drs. I have ever met, would totally close the hypoglycemia topic and move on, and probably try to do whatever so that they don't have to follow me very close anymore. So, I am annoyed with endo. and do not know what to do?! I guess where I am at is the did run just a couple of small blood tests, after my constant questioning. So, I need to get those back, and then otherwise I am testing my blood sugar and guess I will have to send them an extensive list of my finger pokes! They don't want to see me for six months, which means I probably won't see them again with everything... (many reasons- one that I may likely not be in town in 6 months, so a great help that is!) Make things worse... I saw them in their little office looking my direction whispering and laughing! I am glad I could entertain them! SO... Does anyone in the OHIO area know of a good endo that knows how to look at the pig picture and may even be familiar with dysautonomia? I was thinking that there must be someone at Cleveland Clinic or somewhere. I guess to sum it up... I am frustrated. Feel like I didn't get anywhere. Not feeling a whole lot better for a while. Feel like I am getting passed off constantly, and feel like a ping-pong ball. Urrrgghhhh!!! I am sure there is more, but this is already too long!!! Thanks, for reading and I would absolutely appreciate any help that anyone can offer!!! Thanks!!!!!

Hi, I am not familiar with it, but I think you have to be very careful, especially with claims like they make! Watch what you put in or do to your body. Make sure that before you take anything, even if it is "natural" that your dr. okays it. You want to make sure it doesn't mess with your current meds or treatment.

Hi, Chiming in a little late, but wanted to say that I too have always sweated an extraordinary amount on my core (underarms and back), but at the same time can have cold hands. But, at least I used to, frequently have the extreme sweating without the cold hands. For a while my hands seemed like they were one of the places all my body heat escaped, I used to never have cold hands. Now they are ice cubes!

Hi! I am glad it sounds like you got quite a bit of good and useful news at your appointment! I hope that some of the things he prescribed help you out!

Hi, Wow, some of these stories are scary! I am one who has an lidocaine insensitivity, meaning it takes a LOT of it to get me numb. Some of this is supposed to be linked with a potassium insufficiency, but have not discussed this with a dr, so am not sure... I have had these large amounts of lidocaine etc. make my ANS go crazy, rapid HR etc. So, it can do it to you, but most drs for some reason can not comprehend this.

Hi, How are your exercises going now? Just start slow and work your way up. So, you may do just a couple of each for a while and then work yourself up to doing 10-15 reps. As far as "normal" exercise prescription goes if your goal is endurance you should work up to doing 12-15 reps of each exercise. And then if able and want to add another set, you can add another of 12-15 reps of each exercise. You could also do something like 1 set of each exercise in the morning and one in the evening. Or do half of your exercises in the morning and other half at night etc. In other words do them at YOUR pace, and don't over do it. Start slow and in increments and work your way up.

Hi, Sorry that you had such a rough time! I think it is wonderful whenever anyone is able to help and volunteers to participate in research (and be a lab rat!)! I think that it helps us all immensly, and I hope to sometime also be able to assist in some research to give back as well. So, foremost be proud of yourself for sticking in there and being the lab rat! I wish that drs were more understanding and sensitive at this appointments. They do need to understand that their lab rats, are actually HUMAN and not rats, mice, rabbits, or monkeys. He should have been more vigilant and understanding of your other medical history and how other drs have been doing your treatment protocol and why. I am not trying to give him an excuse, but sometimes for research the drs have to stay blind to some factors- I am don't think this was the case here, but not sure. Also, sometimes the research protocol calls for the patient to be blind or to not do certain things (ie talk too much on certain topics to patient) because if it possibly messing up the results. I don't think this was the case here, but ya never know. And after all that he wanted you to come back for another one of HIS research studies... that was the icing on the cake! The nerve!!! I also agree with bringing this up to a patient advocate or the dr themself. I, myself, although introverted have no problem telling people when they are treating me unfairly, because I am human, and I have rights. We should never have to actually be treated like lab rats, that is why they have the review committees etc for research. I have been treated unfairly be drs in the past, sometimes I will put up with what I can for an appmt or two, but if it is an ongoing thing and nothing positive is coming from the situation, I have called them out on it and discussed it with them. On dr. told me if I wasn't going to exercise, they couldn't help me and that I needed to find another dr. So, sometimes it is just indicitive of how much that dr is not a right match for you. But, in this case I think that the dr. is forgetting the big picture, and may need a slight deflation of that round object on his shoulders! I hope that you get some more compassion and helpfulness from participating in this research!

Hi, Before I read many of the other responses the only thought I had was more of increase in ANS symptoms in the form of vasomotor rhinitis. I figure if our ANS symptoms can increase with our time of the month that if you are prone to vasomotor rhinitis symptoms that these may increase as well. Mine wax and wane, and I haven't observed a pattern before, and this month I had a cold, so not a very useful observation period. Vasomotor rhinitis triggers for me are exercise (or sustained activity like cleaning), eating, hot or cold environment, etc. Although this may not be what you are describing I thought I would bring it up.

Goodness! That sounds HOT and miserable! Summer that was along the lines of what I was thinking they have 114 degrees F and here we had had the -12 below zero a couple of weeks ago that was also quite miserable... We need a way to find a 'happy medium'.

Is anything else different now with your cold? Maybe your BP is higher because of the cold? Are you drinking a lot more or anything that could also cause an increase in BP?

Hi, If you are lying flat on the table that can cause that kind of reaction when you get up. I too have that kind of reaction when I get up due to lordosis of my lumbar spine etc. So, if you can when laying like that put something under your knees to help your back out.

Hi, Just wanted to say I feel your pain and frustration with lack of and disorganized sleep patterns. I don't have exactly the same problem. But, I am always a night owl, which messes me up constantly. And then with weather changes, time of the month, etc. I can go for days with little to no sleep. Some days all I can sleep are in 2-3 hour spurts. It gets very annoying and wears me down. I don't have any answers to what helps or doesn't. For me I try to find what is triggering me to wake up or not be able to sleep and eliminate the trigger if possible.

Hi, As far as too young... there is not really an age that is too young... babies can have GERD... I started having noticiable ongoing GERD issues after my appendectomy at 15 y/o. So, I was young and still have it. I have had a lot of trouble with repeated frequent burping etc for years. Some meds make the reflux unbearable... For me the GERD is dependent on so many things. It is in part due to dysautonomia and my ANS system being out of whack. It is also due to meds, and whatever all happened after surgery to make my GI system so annoying.... But, it can be totally separate from dysautonomia if the GERD is caused purely by stress, foods you eat, and other lifestyle things etc. But, it can still occur in some of us even if we cut down on all of the triggers. If it is related to your dysautonomia then it will likely flare when other symptoms act up as well. Also, I think GERD is relatively common in those with EDS (which can be a precursor to dysautonomia).

Hi, I just wanted to add an answer to what the QSART is for. It tests for small fiber neuropathy (autonomic and sensory neuropathy). EMG tests for large fiber neuropathy (motor neuropathy). I didn't have the other sweat test, so no stories... I had a breathing test, but I do not think the one you all mentioned. So, sorry I don't have much else to add.

Hi, I was just wondering if anyone has been diagnosed (or found to have on examination) anisocoria (diameter of pupils not equal)? If it is an ongoing symptom and not something that happens once an a while (ie. normal), if can be a sign of many things, including neuropathy. I am now realizing that I had this at the last drs. visit and probably have it most if not all of the time. It probably explains some of my weird eye issues... So, was just curious if other people have had their drs notice this and order further tests on it? I think I am scheduled for one test in regards to this, but don't know a ton about this to what it all may mean or how treatment etc. may differ because of it? Any experience? Thanks!!!

Hi again, Yes, I outgrew the seizures luckily. But, seizures run in my family, so I am not taking it for granted... Many of the drs. I don't think believe that the EEG's come back negative, I think that they had thought I was having seizures.... Who knows?