MamaTrain

Naomi, I cant figure out who it is written by. At the end of the article there is a link but my server says it cant connect to it so maybe it's out now. I am going to print and save this one as it's very informative! KC

jread, I would think it's more about blood sugar than "hunger". Now I am not an expert but from what I understand when you let your blood sugar get too low (for your body) you release some glycogen and norepinephrine. If you are producing alot of "epi" for some reason that can make you feel hot I think. Small high protein meals is what alot of us do to keep blood sugar in check. Keep researching...it's the best way to learn things! Best wishes, KC

Alison, Can we chat in email? I like that better than personal messaging on here. My email is TheTrainStationMobile@gmail.com I look forward to chatting! KC

I know this article had lots of little tidbits that I had only heard a little bit about so that was nice! Especially the left side heart stuff. I swear in the beginning of my POTS I could roll over on to my left side and my heart would race to like 120 and then I'd roll over and it would slow down. I think it's all related! Thank you Krista for posting on Facebook!

http://www.drug3k.com/forum1/Heart-Diseases/Has-anyone-heard-of-Postural-Orthostatic-Tachycardia-Syndrome-223402.htm

Welcome Alison! I,along with many others I am sure, laughed hysterically when you wrote about your husband coming into the appointment with you! Now that was funny stuff! I think just about everyone on here has been told they had anxiety. Especially in the beginning. I finally asked my husband to go with me and albeit he does not have the credentials that yours does he did try to get them to listen to us when we said it's not anxiety! When I found my cardiologist, whom studied with Dr. Grubb so she knows alot about this disorder, she apologized for all those docs and said please don't be mad at them they just don't know any better! It was so nice to hear that our anxiety like symptoms are one of a physical nature and caused my body functions going haywire. Do you know about brain chemicals and how the work on the body? I would love to pick your brain! :-) Thanks for sharing your story and giving me the best laugh I've had all week! KC

. Also, I have measured her blood pressure and heart rate sitting vs. standing and there is hardly any change, so I don't think it is POTS or anything, but who knows for sure. She definitely has not had a tilt test or anything like that yet. Have you tried testing her BP and HR first thing in the morning? Take it when she is lying down and then when she stands. Take it at the 1 min point, 3 min and again at 5 min. That is when mine shows up big time. The rest of the day I really dont have that when I stand up. I was dx'd with POTS in January after 2 years of "mystery illness". I am inspired by your posts. What courage you both have and I am going to pray for your family! :-) KC

Sitting in church waiting for service to start and read your post. So uplifting to hear your daughter is doing well! May God bless you more and more each day! KC

This subject has been brought up before and I might have been the one to bring it up! You could try a search on it to see older posts. I want to try the 5-HTP again. I tried it over a year ago and I think I was just still too messed up to tolerate it. But it was like that with every new med or supplement! Start small and go up slowly is my only suggestion. Let us know how it goes and good luck! KC

Thanks Firewatcher! I will try those this weekend and see how I do. Naomi-I dont know what it is with the cold but some days I am "ok" and then others I am freezing all day long! I wear long johns, 2 shirts with a sweatshirt, thick socks and I will still need the heating pad on my legs to keep them warm! It drives me crazy and I'm so ready for 65degrees and above! Ok well not too far above because the problems just start again with the heat right? LOL!

It's that time of year again where I will need to be outside watching my oldest for Rugby matches. I absolutely love it but I have such a hard time in the cold. Last week we had a friendly match and it was 29 degrees outside! I had about 20 layers of clothes on and only made it about an hour before having to go into the car. What I notice is I do ok when I'm there but when I get home I get so very sleepy and can not do much of anything afterwards. Does anyone have any suggestions on how to prepare my body for the cold? Should I just plan on being a couch potato after every match? Your thoughts are appreciated! KC

K'sMom, I was just thinking on the way to work that back when I had my hysterectomy (before my dysauto) I had asked them if I could have a spinal instead of being put out as I had done horrible after surgery before and they agreed that it would be ok. It was very different but I must say I felt better than I ever had after any of my other surgeries. Perhaps Kay could have that so she doesnt have to be completely put out. Ask about it if you think it might be a good idea! Hoping your having a good day, KC

So sorry to hear surgery will be in Kay's future! I just asked my cardio about surgery/anesthesia and she said well hopefully it's planned ahead of time and we can prep the anesthesiologist that you will need much more hydration and very close supervision on HR & BP. Didnt sound too bad so I was more at ease about it. She did say if it was an emergency type of thing that hopefully someone could let them know about my dysauto before it got too far into treatment. I will now drill my husband on what to say in case of an emergency! LOL! Best of luck and stay positive! KC

Took me 2 years to get the "official" diagnosis but through all the wonderfully helpful people on DINET I had known it was dysautonomia for over a year before dx! I am trying to spread awareness here in my little town by talking to doctors and naturopaths when I get the chance. I hope it might help someone else with this not have to wait as long!

We are always worried about meds and our POTS aren't we? I never taken either but if I was contemplating I would be more concerned about the codeine cough syrup since that seems more likely to effect the nervous system. I have taken Vicodin and didnt have any issues. It may be just one of those gotta try it and see but I know how scary that can be when you are already sick and the last thing you need is your POTS going haywire! Best of luck to you! Get well soon, KC I may sound like a broken record to some but I still think Elderberry extract is the BEST stuff for keeping viruses away or stomping them out when you do get one. I have been using it for over a year and it works miracles for me!

I noticed on that list of Rare Diseases that "Dysautonomia like disorder" is listed. What do they consider dysauto like? Interesting!

It may sound crazy but in the beginning of my onset when no one had a clue what was wrong with me I bought thouse Sea Bands wrist things for motion sickness. I thnk they helped a bit and there was no medicine side effects. There is also a med called Meclizine HCI that you can get over the counter for motion sickness/dizziness. I believe it makes you sleep like Benadryl but not sure! I hope she feels better soon I know how much that can affect your life. Prayers to you and her! KC

I was just having this conversation with someone here in my town who was asking me about dysautonomia and POTS. She asked "well is it rare?" and I replied "I dont see how it can be that rare when I have found out 4 other people in my town have it!" I am seriously wondering about this now! Crazy stuff for sure! KC

Thanks for the link Firewatcher! I wasnt expecting the pictures! LOL! Good thing one of my sons wasnt just standing right here in the office they probably would have flipped out!

Wow you guys this is pretty interesting. I have been chatting with my Mom telling her that research is showing a connection between autonomic dysfunction and fibromyalgia. She has never had the POTS symptoms but she has been diagnosed with Fibro. Where I am a bit confused is my problems seemed to all come to a flaming head when I mistakenly took my sons Ritalin for my thyroid med one morning. I was in the ER that night and still felt like I was having a heart attack. They said it was a panic attack...I said "for 12 hours"? I have never been the same since. I do not believe I fit in the hyper POTS category either which I know can be linked to a problem with ridding excess norepi out of the system or something to that effect. I did read some articles about hyper POTS that linked it to fibro as well. Once I think I know something I feel like I know nothing! I do not know if my Dylan will develop POTS but I have been concerned about it since this happened to me. He seems to be growing well and isnt skinny by any means. His other condition keeps him less active as sports are hard for him. What is thought to be "puberty" exactly? I mean my older son who is 16 had underarm hair and all that by the end of 5th grade. Dylan is in middle of 6th and I still dont see any signs of hair growth. What do you guys think? KC

Firewatcher, This is a GREAT question! I too have a son who is on meds for attention issues. My son is 12 and a half and I know puberty is coming. I worry about him because he is the one who has issues all along. He has been diagnosed with Developmental Coordination Disorder also known as Dyspraxia in some countries. He was put on the meds because they believe the DCD makes it hard for him to process information and after awhile he just checks out cause he is tired of trying to keep up. I believe his whole system is out of whack. He does well on his Ritalin so I dont know. I have bad feelings about just having him on stimulants period but this whole POTS thing has me worried. Are you more concerned with the new med possibly triggering POTS? KC

Hi Tinks! Welcome to DINET! You will find alot of wonderful people here who will indeed help you out alot! I dont know your story but I hope it was a relief to have a diagnosis as it is for so many of us who struggled to get one. I would say for the BP reading to make sure you take your reading 2 times to make sure your number is accurate. I would sometimes do it 3 times to make sure that was really my number! I also switched from a wrist cuff monitor to an arm cuff one. The wrist cuff ones are good but they are farther away from the heart and can give you lower readings according to some of what I have read. Since I switched I noticed my BP was a little higher than I thought it was from the wrist cuff. I think your puffy hands means it's working and making you retain water which seems to be an issues with us dysautonomics. Hope you have a great week and look around the forum and especially read all the stuff that is on the home page of DINET. Very helpful stuff there! KC

Hi Sarah, My doctor who uses naturpathic medicine in her practice just gave me licorice root that is supposed to act like Florinef but not so harsh. The type of licorice and the dosage really matter but it's worth checking into if you want to! She gave me something called Licorice Plus made by Metagenics. I am supposed to start with 1/2 tab for 10 days and move to 1 tab after if I can tolerate. Every treatment is like a dice game...you just have to try it and see. Unfortunately, some can make your life a living nightmare til they wear off in your system. Been there, done that way too many times! :-) KC

You will probably see a trend here with the small meals, low carb and high protein. I shoot for 100 grams of protein a day and 120-150 carbs. My downfall is chocolate....I absolutely LOVE it!

Thankful, I feel like a complete idiot but I didnt even know there was a newsletter! I have rarely even looked at the main page of the DINET site as I always come here! I will need to read all of them now! I am wanting to start a support group and it would be a good resource to use! KC