ajw4790

Hi, I finally sprung for a Polar heart rate monitor for Christmas. Thankfully I have started to be able to wear watches again without intense wrist pain... I think the neuropathy progressed, so maybe not totally a good thing. Anyways, I have worn it a couple of times, but have issues with the chest strap digging into my skin and causing some sores to develop. Anyone else have this? Any suggestions? For one I am probably sensitive to the material. My torso is the one area I still sweat, so... Not sure... wondering if I was the only one? Also, thanks to those who let me know that the newer models don't have as big of an issue with electomagnetic interference from computer, tv, car etc. It was one of the major reasons I was holding out... My dads old one that I borrowed a couple of times had that problem.

Starting a list of products... Drinks Gatorade (G2 has artificial sweeteners) Powerade (not anywhere near as much sodium as gatorade) Accelerade Clif Shot Power Bar electrolyte powder Luna Bar electrolyte powder Electromix powder (no sodium) Gum Glee Gum (loses flavor fast) Toothpaste Tom's of Maine Toothpaste

Hi, I know many of us are unable to consume artificial sweeteners for a variety of reasons. Mine is migraine and increase of overall symptoms. So, I am looking for products that do NOT contain artificial sweeteners in a world where they put them in everything. So, I wanted to start a thread asking for recommendations and for people to post products they use that do not have artificial sweeteners. I am looking for a recommendation of gum without artificial sweetener... Also, I did not realize that most if not all common toothpaste brands contain artificial sweeteners, and have now worked to cut this out as well. Is there any other common products people may not be aware that have artificial sweeteners? Seems like I recently ran across another one and I can't come up with it right now... Also, has anyone come across any new products with Truvia instead of the artificial sweeteners? It would be nice if some of these products would use Truvia instead... That leads me to another question... Has anyone had a negative reaction to Truvia? How do most of us respond to it? Like we do for sugar? I also was hoping to come up with a comprehensive list of sports drinks/electrolyte drinks that do not harve artificial sweeteners. Recently some people have posted on products I have not heard much about, and hoped that maybe we can compile a list of products that people have found helpful. Thanks!!!!

Hi, ADA is just an act (law) not an organization or anything. Hope that helps somewhat!

Hi, I don't think I have had the burning... I have had pain, irritation from canker sores etc, and an itchy tongue! An itchy tongue is very annoying and sometimes it feels swollen... normally I guess it is an allergic reaction.

Hi, I too had thought that I few people here on the board had good results with Cymbalta. I recently started Cymbalta, I guess about 2-3 months ago now. I started tapering off the Wellbutrin slow (no longer taking) and weaned to a smaller dose of Zoloft. Then added in the Cymbalta. Suprisingly for me it has been about the med with the least amount of side effects. There was a month or so where whenever I came within 6 hrs of the next dose I started getting a migraine. But this is also right after weaning of/down on the other meds. I haven't had that problem now in weeks. I do feel it has helped some. Mainly in the ways it is hard to describe... better endurance, less dizziness, better heat intolerance (saw a big help here with being able to drink hot beverages again). I also have felt like I have little spurts of energy that I didn't have before. One negative is that I do think that it has raised my resting HR, so I do still get high HRs frequently. Cymbalta is also helpful for neuropathic pain, migraines (maybe), ANS stuff (HR/BP regulation), and cognitive issues. I do think that it can be helpful for some people. I should add that the diagnosis that they originally wanted to try Cymbalta for was the ADHD. It has helped some, more than others I have tried, but there is still a long road ahead there... Hope that helps!!!

Welcome! Your posts are all very interesting. I will have to look into this more later... I still am not sure the absolute best and conclusive way to test for gluten intolerance??? I guess you discussed having to go gluten free for a year, other than that what is the gold standard? I think I have had blood tests and checked when I had an endoscopy. I get confused because it seems everything disagrees with another source etc...

Welcome! Hope you are able to find some good drs. to help you out. You may want to try seeing a dysautonomia specialist. I guess your closest may be OH? See if your dr will write a referral and work to schedule an appointment. It can take 9-12 mnths sometimes to see a specialist. Even where you are located maybe try to see a electrophysiologist cardio. or neurologist that can help you more with the meds etc. Look for someone that deals with ANS disorders. Hope you find some more help soon!

Welcome! Hope you find some help with it soon!

Hi, I too think this is different than what most of us need. This is talking about retraining a healthy ANS, whereas most of us have neuropathy or damage to the ANS that retraining is not apt to help significantly. It is interesting though...

Hi, I too have intense reactions to changes in barometric pressure, humidity, and sea level. I haven't flown in a while, so I do not know... But, I am in Ohio and haven't gone very far west in over 10 years, so I can't compare. When I drove to Nashville, I had a serious flair, the sea level difference and humidity was AWFUL!

Hi, Have they looked at Reflex Anoxic Seizures?

Hi, My body will tense up and go into "fight or flight" type response if I was sleeping soundly and awaken quickly to the alarm. Also, could it have anything to do with losing fluid volume while sleeping? Would you benefit from raising the head of bed to minimize the amount of fluid loss to urine excretion through the night and first thing in the morning?

Hi, Did they say what kind of biopsy? It could be one of many, so I am not sure... nerve, skin?

Hi, I agree about trying the BB first, if your dr agrees... there was maybe a reason they wanted you to do it this way? Also, I was wondering how you know it is the high HR that is causing all the problems or if the high HR isn't the response to what is causing the symptoms. I guess I just wanted to point out that it may not be as straightforward as that, yes sustained or quick spikes in HR make us symptomatic, but is there anything else going on? I just know that I have learned to listen to my whole body and not rely on that one number. If your symptoms have increased/you are feeling worse, look at what has changed in that time period? You mentioned there are a lot of other things going on, could stress be wearing you down and leaving your ANS on high alert the majority of the time and not allowing yourself a break? Depending on what all is going on try the basics, making sure you are getting plenty of restful sleep, staying hydrated, eating properly, ensure electrolyte balance, taking meds according to dr direction on a daily basis, take time for yourself to rest during the day, take care of yourself, and try to find any ways to relieve stress that work for you. Also, exercise at a low level as able to. Also, the latte in the morning is likely spiking your HR so maybe try to not drink it until you are at work or something. It is possible that the caffeine may be doing more harm than good. Remember it is a stimulant and raises HR and is a diuretic, so it lowers your blood volume if you are not replenishing properly. If in the US they do have to make reasonable accomodations so that you are able to work there without a seemingly easy task like getting into the buiding making you feel worse. They may require a note from your dr. to prove disability and then for you to tell them that according to the Americans with Disabilities Act I am entitled to reasonable accomodations to allow myself the ability to work here without making my disability worse or making it to the point I am unable to work. If they say it is unreasonable then, you may need to consult with a lawyer. Also, does your employer have more than 15 people as employees? If not, ADA does not apply to them. You could look into talking to the owners of the building or the city (whoever owns the nearby areas) to see about adding more handicapped parking. Hope that helps!

Hi, Welcome! I am not sure how much I have to offer on these topics, but I was curious if they knew the cause of the stroke and if that mattered at all. When I hear stroke and seizures in such a young child I tend to wonder if there is a metabolic/mitochondrial disease component? Things like MERFF/MELAS etc. It sounds like you are seeing a lot of great drs. that know what they are talking about so they will hopefully be able to get to the bottom of it. I also wanted to add to make sure she continues to see some pediatric specialists (endocrinologists/neurologists etc) because no matter how good of intentions of the adult specialist drs they tend to forget the pediatric side of things, because they do not often deal with it. Best of luck and welcome!

Happy Holidays!!! Merry Christmas and Happy New Year!!! Hope everyone has a great holiday season! Hopefully symptoms will stay to a minimum for all and that everyone is able to stay as far away from the hospital as possible. Best wishes to all!!!

Hi, I will think more about it later, but wanted to add that you can get a basket/bag with pockets for the walker to put the reacher/grabber into. I know others like shower chairs etc. I will think about it....

Yea! I hope they continue to be helpful and understanding! Maybe they can even be a good resource for other helpful drs/treatment! I wish there was more of those!

Hi, I had just a couple thoughts I was wondering if they looked into etc... Any compromise to vertebral artery? What you said about being on the TTT and your response made me think of that. Also, Thoracic Outlet Syndrome? Hope you find answers soon! Just be careful, and if there is instability probably avoid chiropractors etc. until you know more of what is going on.

Hi, Frustrating! Part of it depends on how high/low they were. Also, what meds etc you were on. You said this was during an inpatient visit, so they may have thought that for the circumstances that you were in that they were " normal" enough? Were you on many meds? Have an infection? For the chest x-ray, was that comparing to x-rays that were performed in the same way with the same views? I wonder if it makes a difference btwn drs. reading the films? Did you ahave any trauma (car accident etc) in that time period or anything to hurt your back? Depending on the changes it may be a lot for 7 months, or it may be a minor difference, and more of a difference with the drs and what they were looking for. I hope that you can find some answers soon and that it turns out that these things are minor in nature, so that you don't have any long term affects.

Hi, Sorry, I don't have much insight from the bowel discussion aspect. So, is it like a combo of gastroparesis (ANS malfunction) and then EDS causing too much elasticity? I wonder if they do things like botox etc. to help with issues like that? And it likely wouldn't be helped by a gastric pacemaker either? Other meds? Foods to stimulate digestion? Exercise? Not sure... Did want to ask if your gall bladder had been fully examined (beyond ultrasound), because I have heard from Bev etc. that people with dysautonomia tend to have dysfunction of the gall bladder that is not seen via ultrasound, and that most of us have it to a degree. Also, I have to say I totally identify with wearing anything beyond my normal shoes with good support, wrecking havok on my feet. I wore shoes with little support, thick wedged soles, and plenty of room in them... so not even spikey narrow heels! But, 2-3 days later my feet are still sore. Also, I kept have my ankle go out and my foot would fall sideways while wearing them, I came close to twisting my ankle like three times. So frustrating! I could not wear heels on a daily basis! I hope that you can get some kind of relief soon!

Happy Birthday Melissa!!! Hope you are able to go home soon and that things are calming down!

Hi, How are you taking your pulse? It maybe that some of the beats are so faint that you may not register them if you take it manually or even with a BP machine. Make sure that your fluid intake is good and try to move around as mush as you can to get it up. Did you start a new med or accidently take too much of one you normally take. I am not a dr. but if you take a beta blocker normally you MAY not want to take it if your HR is so low.

Ernie, Happy to hear it went well!!! I know it isn't related to your recent stay, but I have been wondering how everything has been going with your family and the research study? I hope that everything is going well and that they will find something to help your family!