MamaTrain

As I see the list of replies piling up I can tell this is a common problem amonst us! Do you have a hard time falling asleep or staying asleep? Mine is always staying asleep. I can go to sleep at 10 and wake up at 3 am on the dot for like days and days in a row! So annoying! I have tried sleep aids but since the majority of them work on your ANS I always find myself with more symptoms sometimes even waking up with a racing heart and all that stuff! I would look into what has minimal affect on the ANS and go from there. I know Melatonin is on the what to avoid list on the DINET home page. Some say it works great so it goes back to what works for some doesnt work for all! Best of luck and if you do find something please share what worked ok? KC

I absolutley hate that feeling cause it will come out of nowhere! No wonder all the docs thinks we have anxiety...they just dont get how the ANS works!

I will read it and see if anything fits me! Thanks Julie!

Hello DINET! I'm writing today because I have been troubled by a returning symptom and a new twist to that symptom! I'm sure all of us when we start to feel bad wonder what we did to bring that on or bring it back in my case! Since the onset of my dysauto I have had muscle weakness. In the beginning it was relentless! I couldnt even stand for a few minutes and I would get this very small all over body shake starting in my back. For quite some time it had gone away and would only shake when I really pushed myself. Well now it's back again and it's bugging the crap out of me! The new thing that is with it is my torso muscles feel like I have been doing a 100 sit ups but I have done nothing! I never had this before with the muscle weakness. Could I be doing something while sleeping that is causing this sore feeling like I did a bunch of side bends and sit ups? The only thing that has changed is I stopped taking my estrogen and progesterone in March. The reason I stopped taking them is when I would take them I would get this terrible anxiety like feeling. It was freaky and just started happening one day out of no where. When I wouldnt take them I would be fine. So......any thoughts on this? KC

I was just going to post about salt tabs! I am wondering where you buy them at? My cardio said 4-6 grams of salt a day! It's a lot and I love salt!

I started to see a counselor to deal with all the emotions this disorder has brought to my life. The counselor said it's very common for people to need to see someone when dealing with such issues. It really just ***** the life out of you if you let it! I am at a better place physically so it makes the emotional alot better as well but I still have many, many "moments" everyday that I know is my POTS saying Hi just wanted you to know I'm stil here! I just make it a point to keep pressing on so I dont feel like I'm letting it get the best of me. Keep your chin up....this too shall pass! KC

This happened to me a lot in the beginning. My left side was always bad news buy if I rolled over to my right side it would slow down! Not sure why but its not just you! :-)

I would suggest being extremely hydrated before and after and make sure you ask for shots with NO epi in them! I have had Vicodin since having POTS and it was ok. Best of luck to you and let us know how you did! KC

I got the shot with no epi and it worked great! :-)

Christy, Is Cymbalta a SNRI? I have seen Abilify on the commericials but unsure what it does. Kudos for you guys for trying it! KC

I saw this on the POTS page on Facebook a long time ago. A friend of mine whos daughter also has POTS saw it and we messaged about it. She found out that they used the anti-anxiety medicine venflaxine (spelling?) which is the ingredient found in the drug Effexor. I told her that I had actually tried that way before I found out I had POTS and it made me feel terrible and they took me off of it cause they had never seen that reaction in someone. Little did I know that I am one of those POTS peeps that puts out way too much norepinephrine and that's what Effexor does it incresase the norepi! It may work for those who dont have that problem and need the extra norepi to raise blood pressure perhaps! Hope that shed some light on it! KC

I'm glad to see this post as I have been struggling on what to do about my job. I only work part time but it's should be full time for the amount of stuff that needs to be done in that 4 hours! I am really struggling with the pressure from my direct supervisor. I am being micro-managed and it's driving me CRAZY! Extra stress is just not good for people with POTS but others dont really understand how it affects us. When I am having a bad day I have to walk around the building we are in to get rid of that excess epi pulsing through my body causing havoc! Thanks for the post! KC

Hello DINET! I am inquiring about neuropathy for my best friend who has been suffering with some very disruptive symptoms. Here is what she has been dealing with for the past month: started off with all over body itchy/sensitivity on the skin that would make her want to itch it tops off feet/shins and tops of hands felt like they had a cold sensation like icy hot was on them one incident where top half of body was very hot but lower half was not moved to a burning sensation on arms, lower legs, parts of back feels somewhat anxious but thinks it's from worrying about symptoms She has seen a neuro and they have her on 200mg of gabapentin (Neurotin) 3 times a day, 1000mg of B-12 and are going to be testing her nerves with the EMG & NCS testing protocol. Does anyone have any good suggestions for her? What are the side effects some of you have experienced from the gabapentin? Any info would be helpful! Thank you so much! KC

Lieze, I am so very sorry you are having such a difficult time. My sons are older and it's easier for me but I do understand being overwhelmed. The hardest thing to learn is that you cant take care of anyone unless you take care of yourself first. I think your husband needs to lend alot more support but it sounds like he has his own issues so that may be difficult. Someone else suggested reaching out to family and I hope there is someone you can turn to do so. There are other womens groups out there that may be an option if you feel like you really dont know what else to do. Keep your chin up...you are doing better than you think you are! KC

Hi Jodie, I hope you get some answers from your stress test! Passing out on the treadmill can downright dangerous! Just out of curiosity have you taken your BP before and during exercise? I was shocked to see mine goes down and not up like it's "supposed" to. Just wanted to ask! KC

BellaMia consider yourself hugged but with hand sanitizer just in case! LOL! Seriously though, I swear by something called Elderberry. I have it in a liquid form that has an eyedropper type top and I put some in my smoothie every morning and some at night. It's a powerful anti-viral and I have not been sick with anything more than a slight head cold for over a year. When you do get sick if you take it like 4 times a day your sickness is cut in half! Highly recommend and I have never had a reaction to it. Wish you the best! KC

Thanks Firewatcher! I still find it odd that this is a "rare" disorder when now 3 other people in my town have been dx's with this! KC

This used to happen to me everytime I climbed stairs in the beginning. I think when you have to climb stairs it puts more of a strain on you. I think my blood pressure would go down sort of dramatically causing this to happen. Just either sit down immediately or keep telling yourself you're going to be fine until you can sit or lie down. Sorry that happened to you today...I really do understand! KC

I called my doctors office and asked for a referral to a neuro here in town! It may be they will say you're doing everything already but I need to know is this the cause of my dyauto!! KC

Thanks for your replies guys! I'm glad I'm not the only one wondering about this! Sallysblooms- What is Lipoic Supreme ALA? I'm willing to try just about anything once and if it works that would be a plus all around!

Hi Guys, I was researching neuropathy for my best friend and found an article on the sub types of neuropathy. I was shocked when I read this as it sounds EXACTLY like dysautonomia. I found this Mayo article and wanted to share it and see what you guys think. I wanted to add that I have been doing this for 2 years and I honestly never had this referred to in any of my reading! KC Check out the article.... http://www.mayoclinic.com/health/autonomic-neuropathy/DS00544

As far as I know it only for the dx of Hyperandrengic POTS. My TTT NE level was 540 and I still was diagnosed with POTS. KC

Not sure if this will be of any help but my cardio told me not to smoke marijuana because I would pass out. She said it's a vasodialtor and would lower my BP too much. I never have either but apparently some people have thought maybe that would calm them down when they are in the hyper state like too much adrenaline going through you! KC

Oh Janie I hope it works out for you! If you can stand it try to muddle through. I remember when this all first started for me they gave me Buspar and it gave me the most freaky anxiety I had ever had! I quit taking it...maybe I should have stuck it out a bit! Keep us posted! KC

Good Afternoon Lauren! Have you correlated this to your monthly cycle? That seems to be a trouble time for most of us. I have been using hormone supplements to balance my hormones and it has helped quite a bit. Perhaps you could look into getting your hormone levels checked. Hope that helps a bit! KC