pickledfairy

I notice my legs feel like there is a combination of itchy, tingly, and burning sensations going on...at the same time they ar ered and blotchy as well as swollen. It reminds me of when I was a kid and would get out of a warm shower when the bathroom was very cold and I would tell my mom I had the "hurting itches"...now it happens whenever I am upright in one postition for too long or when I am sitting at the computer for too long. Sheridan

Jacquie, I worked as a child life specialist with pediatric oncology patients before getting sick and tricks and tips for taking meds became my speciality (just think of a four year old having to take 3 tabs of prednisone 4 times a day...all I can say is it is yucky!) Anyway, one trick to help a medication be more smooth would be to wrap it in a piece of your favorite flavor of fruit rollup....it makes the pill slippery as soon as the water hits it. I know it is a bit of a pain, but my kiddos used to tell me it covered up the yuckiness and also made it "slide down the shut" better. Hope this helps!! Sheridan

You got it right Sunset...I had to eat the eggs. I was able to sit for the scanning part, as standing was too hard. It was very easy and painless. Sheridan

Rhada, I'm sorry I'm not sure if any medications can effect the results or not. I had the test the for the first time to see if I was having any break down of my muscle tissue (which would give you high result). All my doc told me at that time was there was no muscle tissue breakdown and at the time I wasn't savy about getting my lab results for myself and just moved on (it was actually pretty low). Then when I was at Mayo it was run along with a battery of other tests and I didn't realize it had been done until my internist pointed out that I have had two results that were low (the original and one at Mayo). So, we just retested it again on Tues. I believe the test is only specifically used to watch for muscle breakdown and thus a high result ( I believe it is used as a definitive test for Muscular Dystrophy), but it has been seen to be abnormally low in people with some connective tissue diseases. So, since I haven't had a positive ANA yet and have many symptoms of a CTD, my doc wants to keep track of the creatinine kinase level to see if it can lead us to a dx of a CTD in the future. I hope this helped. Sheridan

Thanks Daninglight....I have tried most on the market with no luck )when I am going through the symptoms I am now that my doc think may be due to a connective tissue disease of some sort) but I have gotten some new ideas from this thread...so thanks for the replies all! Nighty Night (yeah right) Sheridan

Rahda, Here is a link that explains the CPK blood test. http://www.nlm.nih.gov/medlineplus/ency/article/003503.htm Here is one to the article my doc mentioned in regards to low creatinine kinase and connective tissue diseases. http://www.ncbi.nlm.nih.gov/entrez/query.f...p;dopt=Abstract Hope it helps, I am still trying to understadn it all myself. Sheridan

Does anyone have trouble with perscription sleep aids? I am haing problems with insomina as I have before, and was perscribed Ambien (5-10mg) and even when I take them I still am up until 4 or 5am, not sleepy just dazed and confused feeling. Does anyone else not respond to a sleep aid?

Well, I had an eventful appointment with my internist last week. She looked over my labs from the past year (I just moved back home to Maine from Memphis in Sept. and started seeing this doc) and she thinks there are couple of roots we can take to further explore these symptoms. She said it is not normal for a 29 yesr0old woman to be having the severity of night sweats, hot flashes and joint pain I have been having. My thyriod panels have had something high or low each time it has been done, so she is redoing th epanel to see where we are now. She suspects there is something autoimmune going on as well, especially since my autonomic neuropathy is post viral and my symptoms (other than POTS symptoms) are waxing and waning in nature. I have also had a number of CPK labs that have been abnormally low (which no on told me) and she said this can be the case in people with some connective tissues diseases. She strongly suspects that all of my symptoms are caused by a mixed connective tissue disease or lupus...but said that it may take a number of these flare episodes before we get a true positive answer. She has also decided to recheck my plasma cortisol levels and also wonders if it may be a vitamin D deficiency. It sound slike we may not have a quick answer, but she is determined to figure this out. So, off to the lab again...fasting....and my veins are horrible even when I fluid load....ugh! Sheridan

Melissa, Just wanted to stop in and let you know I continue to think of you daily and I am sending warm thoughts of healing and strength.

I usually get a total of 70oz of fluids in a day (roughly 50 of gatorade, 4 of carnation instant breakfast, 8 of chicken buillion and about 8 of skim milk) unfortunately due to the gastroparesis I am virtually only getting this in, no solids, except for a few bites here and there. Sheridan

Wow! Those pics are amazing! I remember when we had a 3 day ice storm here in Maine when i was in college....everything shut down and because we lived on a "nonessential" road we were without power for over 14 days, it was a good thing we had a wood stove for back up! Keep warm and stay safe! Sheridan

Thank-you for responding everyone, it means a lot to get new "ideas" when I am suffering so and thought that the POTS and autonomic neuropathy would be my final diagnoses. I will be sure to ask my neuro as well as internal medicine doc (I see my internist Wed.) about further Lyme testing as well as any further testing for possible autoimmune related illnesses. I am thinking I am going to push for further cortisol testing and possibly more 24 hour urine catches to see if my cortisol levels are up again...my docs in Memphis thinking I had Cushing's disease is what brought me to Mayo where I was ultimately dx'd with POTS and nueropathy...so it can't hurt to further explore this avenue too. When I saw my neuro (an autonomic specialist) in Aug. for the first time he thought we would be on the "upswing" by my three month appointment (at the end of this month) I guess that is not going to be the case. I am trying to come to terms with the fact that this may not be as quick of a recovery as I had hoped. I miss working, I miss my patients, but I know that in my current state I would not be of any help to them....I guess I am just mourning the fact that I may be on disability longer than I had ever anticipated. Anyway, this has gotten lengthy...thank-youso much for your support. I really don't know what I would do without this site and the love that I feel from the people here! Sheridan

I have had a reoccurance of symptoms that I had when I first got sick, they haven't been a problem since August, they just seemed to go away on their own. For the past three weeks I have been dealing with insomina, severe joint pain (mostly on right side), night sweats, and flushing. I talked with my neuro today for or weekly check in and he said that these symptoms are not a result of my autonomic neuropathy or POTS (which is still not fully under control either) and cannot offer any explanation as to why they have come up again. Does anyone else deal with these symtoms and do they wax and wane like mine have? An EP doc I saw before my dx swore that there was something autoimmune going on despite negative ANA and Lyme titers and said that autoimmune illnesses can take their time to appear fully. I also had very high plasma cortisol levels the last time these were a problem, but the testing at Mayo ruled out Cushing's. I have made an apointment with my internal medicine doc, since my neuro doesn't think it is related to the dysautonomia. So, if anyone can shed some light on their experiences it would be helpful. I guess I just don't want to think about something else being wrong with my body the POTS and autonomic neuropathy are enough!!

So sorry to hear you are in the hospital again. You are in my prayers. Sheridan

HAPPY NEW YEAR!!!

Hi Kexia, I keep track of my orthostatic vitals twice a day and then at the end of the day I jot down what I did that day as well as what symptoms I have been experiencing. I have a blood pressure program on my computer that allows me to keep these readings as well as average them, put them in charts and it has a space where you can write comments daily. I print it off and bring it to my doctor's appointments. I also keep them in a word document so when I am not in Boston I can send them to him via email. It is a lot of work sometimes, but it has worked for me especially since I am 3 hours away from my physician and we are still trying to find a combination of meds that works for me. He loves the reports and says that it helps him to see what my day to day life is like. I have to admit that I am a bit anal retentive, and love to have everything in order and this helps me to feel that way in this craziness that is my life now that i am dealing with autonomic neuropathy and POTS! Good luck finding what works for you. Sheridan

Hi Jacque, Glad to hear it went well with Dr. Novak, I like him too. Although I was diagnosed with POTS at Mayo, Dr. Novak (with looking at some of the small fiber studies that were done) and in light of my other symptoms (i.e. gut problems, bladder problems) also diagnosed me with autonomic neuropathy, saying that he believes it is what is causing my POTS. At first he thought that I would be "on the up swing" in about a month, but now after my admission (and three months of medication trials), he is saying that this is"more severe than he first thought", so we keep plugging along, at least he is willing to work with me and ntot give up when the drugs that are used the most aren't helping! Well, I guess that explanation got convoluded, but from what I gather, like Sunfish said, the neuropathy can cause the POTS symptoms. Sheridan

I had been dealing with horrible nausea for months and finally mentioned it to my neuro. He told me to find a gastro back home to see what's up and he would refer me if need be (I have an insurance where usually i can self refer) He especially wanted to see if it was caused by my neuropathy or because of my previous history of ulcers if all of the new meds were flaring them up, or if it is a combination of the two. S, Like other have said I think it is a good idea to mention it, it may help to give him the big picture of all of your symptoms. Sheridan P.S. I had the EGD on Monday (doc says where my stomach and small intestine meet is hamburger...pretty right? and I have the gastric emptying study today...will keep you posted. Good luck Friday Jacquie!

I actually get it both ways...in the winter from cold outside to heat indoors and in the summer from extreme heat outside to air conditioned cold inside. I am pretty sure it has to do with the body not being able to regulate its internal thermometer when faced with extreme temperature changes...gotta love ANS disfunction...I never realized quite how much it does regulate until it stopped working :!! Sheridan

Thank-you for starting this post Willows.....Happy Holidays to you all and I wish all of you a very happy, healthy, and exciting New Year!!! Sheridan

Well, although it is not affecting my HR yet, perhaps there will be other benefits. ...too bad I'm single! Thanks for the link I am going to go try to wade through and reread it.

Thank-you so much for your replies, Dancing Light and SunFish. In regards to IV fluids, believe me I am very happy to try any and all medications...no matter what they were originally used for ...before looking into the options of IV fluids. Having worked in pediatric oncology before getting sick, I have seen the horrors that oportunistic line infections can have on the body and have no desire to deal with that unless I have to! I am glad that you are feeling better SunFish and I truly appreciate your hard fought wisdom and honestly on this topic, it means a lot. Thank-you. Sheridan

Thanks for all of the kind words. Believe me I will be quizzing him on Friday when I talk to him! No changes in HR or dizziness so far...but I wi give it until Friday.

Hi Jacque, I see Dr. Novak at BMC. As for how the med is supposed to help the POTS...I am still a bit confused. He said that it works in conjunction with the Mestinon and that it should help the blood vessels to I think he said dialate. He hopes that it will help with the leaking of my vessels. Since I have autonomic neuropathy, hypovolemia and POTS, perhaps it has more to do with the neuropathy or the hypovolemia than the POTS symptoms. I am to take my orthostatic vitals twice a day and then call him on Friday and he said he would then decide if I should stay on it. I must admit that when I have looked up the med, it seems to have side effect that are counterintuitive to managing my symptoms (i.e. tachycardia, high blood pressure, dizziness). So, to be totally honest I am going to have to quizz him further to truly understand.

Hello All, I just returned home from a 3 day admission at BMC to try to get my POTS and neuropathy symptoms under better control. After a "fluid challenge" (where they literally sqeezed in two liters of fluids over a half hour) my orthostatic symptoms responded a bit (HR still increased to over 120, but did not get to 170 as before) and this is with drinking 56+ oz of water and gatorade that day. My autonomic specialist said that I have a type of POTS that responds better to IV fluids than oral due to how much my vessels leak. Does anyone else have this, or experience this? Unfortuately, he is reluctant to start IV fluids due to the risk of infection from the line and is trying another drug first. I am also pretty tachy at times while resting (90-100) Which leads me to my next question. I was just started on Yohimbine (which he said could make my hypertension worse but he is hoping it will affect the extreme tachycardia) which the pharmacy insert said was used for erectile dysfunction....yes I can hear the jokes now !! Has anyone taken this drug and if so what affect did it have on you? I tried to do a search for it on the forum, but only got a couple of articles mentioning it had been used in the past. Thanks for any comments, I appreciate it.