ajw4790

Yeah, I think I have a lower BP laying down as well. I think that it may have something to do with why I didn't feel better (actually worse) with raising the head of my bed. Has this been going on a long time? It does sound a bit like an allergy. Have you used a new fabric softener or something? Is the swallowing difficulty only laying down or throughout the day? I hope you find some answers! It does sound like something worth talking to your dr. about.

Wow! That does sound very low! I hope it continues to go up and you feel better! I think it is definitly important to consult with your dr. and continue to monitor it. If you have more problems you may want to consider the ER. Has anything like this ever happened before? I hope you feel better soon!

Let's see I randomly come up with others... * don't wear black (or very sparingly, because it is very easy to get overheated) * the little hand warmer packets that hunters etc. use to keep your hands warm in the winter * other ice/hot packs as well * an remote control car starter for the winter (I am hoping Santa will bring me one!) * keep extras of everything on hand because it never fails that I start to feel bad and unable to go shopping when I run out of stuff * a cordless minivac- so don't have to lug out the huge vacuum for little messes (Santa is bringing me this one!! ) * wireless internet- so you don't have to sit in one particular place to surf (my current situation- santa is also helping with this one!) * Insulate your home/ apt. to reduce drafts- those tend to make me feel worse * I second the Smart Water/Vitamin Water (I haven't been able to find the flavored Smart Water) Also, Wild Oats/Whole Foods tends to have them cheaper (their brand) * I also like the little Capri Sun packs of their sports drink * Berry Almond Lunas and Peanut Butter Pretzel Clif Mojos I am sure later I will come up with more...

Hi all! In a couple of weeks I am supposed to get Neuropsych testing to determine whether or not I have ADD... I am not very familar with it and was curious if anyone else has had it or knows what it is, and what it is all about? I am not really into having some dr. get into my head! Thanks!

Happy Birthday Nina!!! Sounds like a fun present! I totally beats going around in circles! (I am good at that too!)

Hi! Yeah, fatigue can be pretty brutal! I am actually not even sure that I really know what it means to have actual energy anymore! I have had pretty bad fatigue etc. at least since some time freshman or so year of high school, over nine years ago! Some days can be a lot better than others, and sometimes it is close to impossible to move and do much more than sleep (or try to) all day! I have yet to find the secret. I would love to know it! I know it is different for everyone. Hope that you can at some point in the near future get some form of answers and relief!

Mary, Sinus Tachy is a rapid heart beat. So, do you currently take anything like a beta blocker? I think that would often be what to try for tachy rhythms. I think that the anti-depressants also can lower heart rate (one of the reasons why many of us take them). Other than that there are anti-arrhythmetic drugs, but most of them are for arrhythmias so I don't think that is normally what they would use to treat it. How tachy did you get? Hope that helps!

Hi! I currently am not really having that problem, but I think that I did used to have somewhat of the same thing. For years it seemed like I sweated like crazy, and drs kinda laughed at me and didn't understand when I said that deoderant wasn't working for me, and I had to switch brands all the time etc. I also had you know the lovely pit stains etc... I do still have I guess what is excessive sweating especially at certain times, but it is not at all like it used to be. I think it has changed as the autonomic neuropathy progresses, and I think to a degree the meds probably have changed things somewhat. So, I have no pearls of wisdom, other than it is really annoying and don't wear white! I never found anything that worked... I guess meds may help, if you talk to your dr. ??? I wish you luck, I know it isn't fun!

Sorry I don't have any words of wisdom, but I just wanted to wish you luck! I think a second opinion makes sense, and I hope it goes well and is helpful! Sounds like an awful lot to deal with on top of everything else! Hang in there!

Hi Lisa! Welcome to the board! I hope you are able to find some help and support!

I wish him the best! I hope that the treatment works!

I'm glad you made it! I hope the return trip is better!

I think I would see anyone that was willing to see and help me. Ideally they would also know what they are talking about!

This is interesting! Thanks for the info! Tearose: What kind of magnesium do you take? Also, what kind of electrolyte packets have you found to work? Thanks!

Waterbaby: Where at in Ohio? It sounds like an interesting road to explore... For the oral doses of B1 what kind are we talking about? (like a pill of pure B1 or all B vitamins?) What brands are good?

Hi all! Over a month ago my ANS neurologist ordered a bunch of blood tests. He didn't really tell me what for, and when the results came back was real nonchalant and said all looks good your B12 is just a little low. So, I figured to just work on making sure to take vitamins (which continues to be my plan). Anyways, over the weekend I got the bill... Almost four thousand dollars in blood tests, thank goodness for insurance!!! So, I just had to see what in the world he ordered and what was tested. I guess I was given the full report, but it was a lot shorter than I figured. So, I guess they were just really expensive tests. I looked some of them up but really don't know a lot about what any of them mean. I just figure he said they were fine so they are good. I am always a bit curious though when some come up high or low and they just seem to shrug them off. I guess they were close enough. So, he really didn't seem to want to go over them, so I was wondering if anyone had any knowledge of the RBC Folate, because mine was almost 200 higher than the normal range? I think it has to do with the B12, but I wasn't sure if I should change my diet in some way? It just seems pretty high. I also didn't understand the Serum Lambda Free Light Chains (which was low) and Serum Kappa/Lambda Ratio which was high? Alpha galactosidase was also high. I know that a lot of people on here are familiar with some of these tests, so I was just curious about what others knew because he didn't go over them with me. He said they were fine, so I am sure they are, I guess I just would like to have some idea of what they mean, especially for four grand! Thanks for your help!!!

Yeah, I am not sure if I get what you describe. But, I know that both bending over and squatting down to pick something up can both exacerbate symptoms for me. (and make me feel totally awful)

Hi! I am not sure, but I think I kinda know what you are talking about. But, for me it kinda occurs when I am feeling awful and the room feels like it is moving (including the floor), making it seem not level. I think a lot of it is my eyes adjusting, and normally it comes on with other symptoms, which I also think feed into it (nausea, lightheaded etc.).

Decreased migraines and helps with heat intolerance

Good idea! Let's see... * plenty of water- take with me EVERYWHERE * fans etc. to move around air and cool * dress in a lot of layers * heater fans vs. central heat because can move around and control better, is also less overwhelming * little to no heat in the car, so don't start the day out feeling awful * getting up and moving around frequently * sleep! * I now see salt packets in a whole other light, they are convienent little packets of salt to add to anything! (not the annoying thing on the bottom of the bag ) * Post-its- I have to have an endless supply to constantly write myself notes (because I am very forgetful! ) * Remember and actually take vitamins (I am bad at remembering!) * Gatorade I will have to think about it some more!

Good luck! You sound well prepared. I hope it goes well! You will have to let us know how amtrak goes!

Sounds interesting! Possibly dangerous for some of us. I think I would likely hurt myself! But, I am a wimp!

Hope things are getting better! Hang in there! I like your sense of humor! (I guess it helps to have a good one with everything going on.) But, I did like your analogies! I can understand exactly where you are coming from.

Jeez, that is very tachy! Does that happen a lot for you? Sounds awful! I was curious about your ecg watch. I had recently been thinking about if any at home monitor existed to monitor HR/BP/rhythm to try to track symptoms etc? What kind of watch do you have?

Hope your appointment goes well! Good luck!