Loulou

Katie, Hi. I might have to drive further if Dr. Thompson is not back soon. Are you seeing a dr mobile? Thanks for the info Loulou

Hey. Hope your all having better potsie days. Over the last couple weeks I have been having the worst episodes where I flush, become hot and get the worst clamminess ever, then within minutes I am cold. Normally I just get clammy on my hands and feet when I'm having very bad days, but it has changed. It is happening often throughout the day and I even wake up 5 or 6 times throughout the night. I am not sure why it is happening so much. I have my thermostat set on 69, and have very light bedding. There must be triggers that I can't see..... Do you deal with this issue? If so, what's going on and what help's????

I don't know if this might help you, but if I can get myself to the beach with my family, I go straight to the water and stay in it the whole time. Consider finding a way to be in the water. Maybe that will keep you cool enough. Good luck

Katie, Hi. I drive to Pensacola to see Dr. Randy Thompson normally, but he also has POTS and has not been able to see patients for sometime now. I need a doctor here in town. Three hour drives are too much. Jacksonville is a longer ride. thanks though Loulou

Hi. everyone, I want to meet other potsie's here in Panama City Beach FL. Also do you have a local doctor here in Panama City Beach FL. I have been driving a few hours to see my doctor, but the drive is hard. Who are you guys seeing? And how are you all handling the heat? Loulou

Tyler, hi. My family and even my best friend think my pots is BS. And yes, they say I am not right with God either. I have not prayed enough myself. Yea, I got a family just like yours. Hahaha...... So I understand what your going through. I was on 17 medications with side effects to them all, so I just stopped them and now the only meds I am taking is Vit D, B-12 injections and multivitamins. I do much better on protein and veggies myself. Still have some stomach issues. We have not found a cause for mine either. Still trying to find things that help from others in this forum and this is what has helped me the most so far. I cant afford the POTS Center in Texas, but they say they can really help and has cured some people with POTS. My insurance will not pay for it. Maybe yours will. Check it out on line. I hope you are feeling better soon. Also check out Pandysautonomia, hope I spelled that right for you. People with it have lots of stomach issues. Loulou

yes, I have the same issue with sleep, I am awake sometimes for over 24 hours because I can't fall asleep. Finally when I do, I feel like I never slept at all because I am still so tired. If I end up going several days without enough sleep I get arrhythmia, then I have to take something to make me sleep, and If I take something every night, it stops working all together.

Annamaus1977Hi, sorry to hear your not getting a diagnosis. Did they test you for Raynaud Disease? It cause hands and feet to be cold and turn blue from lack of blood flow. You should ask for a tilt table test if you think you have POTS, don't be afraid to talk to your doctors, it is your health, your the one dealing with these things daily. My body temperature is always low, so I think that is why mine are cold a lot. Also I have all the symptoms you have listed but 9,11 and 12. I will be praying you get a diagnosis and that you feel better soon.

I feel that people believe the things that they can see and because they can not see HOW we feel or see what is happening inside our bodies or see just how much we are struggling even when we are pushing it too much. MOST of us do not look as though we are on our death beds or are in a hospital bed with tubes coming out of us. Most people just think we are fine and are using it for an excuse not to do anything. My spouse is supportive, but sometimes it is too much for him too. My daughter just thinks I don't want to ever go or do anything. My brother-in-law thinks " it some fake made up disease that no one has ever heard of ", his words. The rest of my family is so unconcerned that not one of them has ever even looked it up on google to find out what it is or investigated it themselves. I have learned that the support that helps me and people that understand what is going on is you potsie people right here. I've learned more about this condition and that I am not alone right here. You all share what helps and your struggles too, you understand what is happening to me daily. This website has been and is my hope...

I too lost my potsie buddy (REO, my 13 year old boston terrior) about two months ago. I am sorry you too are dealing with such a big loss as well. People may not see our health issues nor know when we are struggling, but my little buddy knew exactly what I needed before I did. He pushed me the days I needed it and snuggled with me when I had to rest. He guarded me in the shower and would scratch around the shower curtain when he knew I'd been in there too long. They do so much for us that we don't even realize. I will keep you in my thoughts and prayers. Again, I am truly sorry for who you have lost.

I begin with clammy hands, if I ignore my hands, then I will flush and sometimes become nauseated. I always have Tachycardia, but I can feel my heart pounding in my ears and I feel like my heart could come out of my chest when I am close to syncope. My lower back will begin to hurt. The rest is all like over heating, if I wait this long to stop then I end up getting cozy with the floor. I really just have to pay attention to the clammy hands. One really weird thing that happens is that my bra feels like it begin to tighten around me like a vise and a my chest feels so heavy that I can not fill my lungs with air.

Always hoping, Hi. I am not sure about the hows or if we are all the same on the very low B12 and Vitamin D. I have not been able to stop mine since I have started, each time my doctors decrease the frequency and dose my levels drop right away. The one thing that I do seem to get improvement with is powerade, I try to drink at least 2-32 oz bottles a day. I have gained a little weight with them because of the sugar in it, but it does help some. The more hydrated I can keep myself the more energy I have. Thank you for posting.

E Soskis,Hi..Do you know why your ferritin was so low. Were you not getting enough protein in your diet? Good luck with your doctors getting your levels back in normal range. I hope your better soon. I just think it we question every little thing maybe one of us will find the link that is causing our pots. Thank you for posting.

Dr. Reveals is the doctor whose webinar I heard about Iodine deficiency. He has a book out about detoxing. I want to get it and take it to my doctors and ask if it is safe to try and get their opinion on the matter, and also get blood test to find out if I have other deficiencies that could be making things worse. I get B12 once a month and a huge dose of Vitamin D every 2 weeks. I was getting IV infusions for dehydration. They seem to help for a few days but I was unable to do it 3 or 4 times a week. check out this Dr. Reveals Iodine information. Thank you for posting.

My B 12 and Vitamin D are low. Blood tests were done when I was dx'd with POTS, (only because most POTS patient have low B 12 and Vitamin D). I wonder if all our Vitamins and minerals are low. I heard a doctor talk about symptoms of low Iodine and most of us potsy people have ever one he listed. I wonder if we should be tested to check all of our vitamins and mineral levels. Has anyone in our forums had them all tested? If so, how were yours?

Yogini, I was misdiagnosed with inappropriate sinus tachycardia originally. I was treated with toprol for many years before a new cardiologist diagnosed me with Pots. Once again, I have a another new cardiologist, who is the top rated cardiologist in my area, who told to stop taking it because it dulls the bodies ability to compensate with all the potsie changes our bodies have to make. My symptoms did gradually become worse over the years, and it seems to make since looking back. So you may be right, maybe it is only bad for some of us and not others. I looked back through old post and read a few others who have been told not to use toprol as well. I'm going to texted my pots doctor and ask him what I should do. Thanks for your post.

Hoop311, I was originally diagnosed with inappropriate sinus tachycardia by a different cardiolgist and was treated with toprol. My symptoms were there but I was always able to keep going. Over time,while on toprol my symptoms became extreme. So I wonder if my new cardiologist is right.

Thank you

I've tried many meds as well, I have too many side effects to benefit from most used for pots.

Sorry, I left out a word in the subject. My cardiologist said that people with pots should not take toprol because it dulls the body's ability to compensate for all the potsie changes that happen within the body. I know what's its for. I was on a high dose for 9 years before I was diagnosed with pots. But I wonder if he is right. I was at my worst while taking toprol.

I will be praying for you.I hope its a good visit for you..

He says it dulls the body's ability to properly compensate for all the potsy changes that our bodies need to make, I wonder if I just had tachycardia one day and then pots came with the toprol. I hope this not why I now have pots