bellgirl

Don't cytokines play a major role in inflammations in autoimmune responses, too? So does this mean that the norepinephrine transporter isn't working properly, because of the cytokines' inflammation suppressing the gene SLC6A2's function in POTS. So how do we calm all the cytokines from going haywire, is the question?! Antihistamines...but if that is the case, then why doesn't this get rid of the symptoms? Is this also an autoimmune response in all POTS patients? We have about 150 more autoimmune diseases, or know about them, than when I graduated from nursing school 33 years ago....Why are our bodies attacking themselves?...Dopamine suppression explains the Parkinson like symptoms, too!! Just rambling, because I'm desperately trying to figure this out. I suppose if we knew all the answers, this would cease to be an issue...

You always have to be skeptical when someone is charging that much for a book I have listened to some of her videos though, and as Rich said, they are free!!

Hi and welcome...your midodrine is keeping your blood pressure raised enough to keep you from bottoming out, so that you don't faint or become too tachycardic, because that is what happens when your body is compensating for B/P's that are too low. You sound like most POTS patients in that you started with low blood pressure, and tachycardia. I hope that you will find out more when you go to Boston for further testing. We are all a puzzle and a mystery...Join the "musical mystery tour". That comes from an old album from the Beatles...lol... But seriously, wish you didn't have to be here. Great supportive group to be a part of, though...

Rama, Your personal messages are full. I already tried to PM you. Could you please send me that whole article on SLC6A2 Gene suppression in POTS. I would like to bring it with me to my neurologist in September. Thanks, and appreciate all your medical knowledge. So glad that you are on the DINET site to educate us all!! Joy, Kim

Have a good relaxing time on your trip Kayla and mom

I don't worry about vasodilation, because I started out with hypertension, anyway. I'm being very observant with all of this...That's why most potsies have to be careful with Magnesium, too, it lowers blood pressure. The only time my vitals are off is during exercise; I get tachy spikes, but otherwise my meds are working for my B/P and my heart rate.

So how do we turn it back ON....this is a great discovery. I want to know what we can do!!

Thanks guys We are going to the Gulf. I love the ocean, too, Puppy. It's easy to float in the salt water when you get tired

I'm better since I am now more balanced with my beta blocker, but I also started with high blood pressure, and I'm now on many supplements and vitamins that have increased my energy. I was deficient in D3, and the difference now is amazing...don't get me wrong, I still have my days and have POTS, but it is alot better You need to do research on supplements; I drink high vitamin and mineral drinks with protein; listen to your body; when your tired, take a nap when you can.

I love the water and swimming, but I can get cramping in my intestines. Going to the beach soon to swim. Plenty of fluids and umbrella for sure!! Glad you do so well in the water. I'm taking some anti nausea meds for a sail at sunset!! After a year on meds and supplements, I'm somewhat better, so I'm hoping and praying for the best on this trip with my hubby It's our 30th year wedding anniversary...

Yes, there is hope...don't give up...I'm finally somewhat balanced with meds after a year. I'm not on Florinef, though. Hang in there. I am 55

I take it mainly because it helps with heart pain. I have MVP, and my heart hurts at times. I also take it because it helps with fat metabolism to the muscles, gives you energy, and is considered an antioxidant. It also helps with neuropathy and brain function. I alternate my supplements, and only take it every third day Since I started taking it, my heart doesn't hurt anymore.

Yes, diagnosis and treatment were definitely a God send!! and a relief

It is supposed to be good for the digestive tract; it makes sense since it heals burns on the outside of our bodies. I drink whey protein shakes, and Boost.

This is wonderful...wow, you have an ethereal tone to your voice that you so very rarely hear! I really think you have a unique talent that you definitely need to pursue. I love to sing, too, and have my whole life, even in high school, and I wish I had your voice. It is very soulful and angelic.

Does it have aloe in it? I've heard that is good, as well.

Oh my...never heard of a blood pressure that high on a living person before in my life. I'm a nurse, and I would say an error Especially since the next reading was so normal...

I take Bystolic, and it lowers my heart rate, but also my blood pressure, too. It has a 12 hour half life, which is better than the rest of them, because no B/P is not a good way to be! No energy, but now that my body has gotten adjusted, I'm a lot better. I also are on some supplement that increase my energy, and try to increase my protein, as well.

Sorry, correction to my previous post, propanolol is inderal, not atenolol, but the half life is only about 6 hours like the atenolol, which means you need more of it more often for it to be effective, so this could also be a part of the problem for you. Bystolic has a 12 hour half life, which is so much better for me. Ask your doctor about this, and maybe it could be of some help with your tachycardia.

I had blood work for Sjogrens that was negative...Is it only a lip biopsy that definitively gives you a proper diagnosis? Glad you are getting some answers and are scheduled for more testing. How do they test for small fiber neuropathy...take nerve samples? I had a nerve growth on the end of my nose that was biopsied, and when I asked my neurologist why I had nerves growing on the outside of my body, he just shrugged, so now I'm curious...

POTS is unpredictable, hence dysautonomia, even with meds. Everyone is different. Sometimes I'm symptomatic with changes in my vitals, other times, I'm not. Every time I think I may be figuring it out, I'm thrown for another loop. Is someone with you, so if you really get into trouble, you have an advocate? It is definitely a balancing act with medications, as I am now seeing Lemons reply. Sometimes they work, and sometimes they don't. Right now, I'm feeling better, so my husband and I are planning a trip to take advantage of some good days. I hope that I don't change when I get there!! Listen to your body. You need a certain amount of exercise, but we only have enough energy to do so much. Are you overdoing it, maybe? I find if I pace myself, I am a lot better. It also takes your body time to adjust to medication changes, kind of a rebound effect after your body has gotten used to you lowering your dose of midocrine. That could be it. As long as your heart rate isn't really low at the same time as your blood pressure, I think you will be OK. My heart rate was 50 standing one night with a blood pressure of 80's/40's, and I thought I would die in my sleep, but I didn't. But that was also when I decided that I needed to change beta blockers. That was when I was on atenolol, (same one you are on but a different name; it was too short acting for me), and now I am on bystolic. I am somewhat "normal" now, but when I exercise my heart rate is still all over the map. Any where from 50- 180's most of the time. Take your vitals when you are lying down, sitting and standing, and after exercise. Normally my blood pressure now runs 90/50, sometimes 80/40, and my HR is somewhere from the 60's to 100 when I am not exercising. If you have low blood pressure, as long as you have some tachycardia, you should be Ok, but if your heart rate and blood pressure plummet together or go sky high together, I would suggest you getting someone to take you to the doctor. As long as one compensates for the other, that's your bodies way of trying to balance you out or function properly. It's complicated. Hope you find a balance, because it can really make a difference .

It's good to get away, even if you suffer the consequences. I always say, I'm not going to let this get the best of me. I mean that wholeheartedly!! Puppy, you are a fighter, too... Sorry it didn't go as planned, but life is like that even without POTS!! I was on vacation at Disney once before POTS, giving a young 18 year old German boy CPR, and he didn't make it. I couldn't even communicate with his father, other than to hug him when the paramedics arrived. There is a purpose in all we do, and doing is better than staying at home all the time . I know there are some here that can't even get out of bed, because they faint. That's a different situation, for sure. That's not what I'm talking about....You keep going girl; don't let it get you down. You've got your whole life to live...Go for it!! I like Corina's quote of Abraham Lincoln; "The best thing about the future is that it only comes one day at a time." Hugs

Tom, I had a virus that triggered mine, and had high blood pressure initially, binocular defect, pitted edema, weakness on right side, which has resolved, hand pain, lungs bleeding, several falls, and abdominal pain, then started having ear problems, tinnitus, eye tearing, dizziness/vertigo from tachycardia and irregular heart beats for three more years before I was diagnosed, so it was a long process for me, 13 years in all. When I started running into curbs, and damaging my car, I finally went back to the doctor. It was definitely time...welcome back, and sorry you have to be here.

Thanks...this is helpful

The only time I was really bedridden was when I had 2 episodes of vertigo that lasted for several days each time. My heart goes out to you....that was a horrible experience. Hope you can start doing small exercises even in bed to get yourself going again. I agree with Sif that if you are deconditioned, it makes it so much harder to get out of bed. There are recumbent bikes that you can do lying down. Are you on any medication for your tachycardia?