the4richards

KeXia, I bought a recumbent bike and love it. I also have a treadmill, but it's much more difficult. I looked up your machine on Bing. You can get it for 15% off, or $509 and free shipping. You make your purchase, wait (I think 30 days) and you get the 15% in a check. I've make some major purchases this way before. No problems.

When my symptoms first started I had huge jumps in both hr and bp(bp went as high as 195/110). After about 1 1/2 months, my bp started acting more like you'd expect to see in POTS (ie, dropping very low when I stand). I don't know why, but everything started to even out after a while. I also started out on metapropol 25 2x day, then to 50 2x day, then 50 4x day. I'm now on atenalol and less than 25 a day. I don't know if it takes a while for our bodies to fully react to the drugs, or we are just morphing into a new phase of dysautonomia. And I understand your stroke concerns. Both times I had to call an ambulance the EMTs said they thought I was stroking. Tests showed that my heart is very strong and normal. Just dysautonomia. Just. Sigh. Good luck with your docs.

I consider myself to have very mild symptoms lately, but bending over will get me every time. I have two 8 year olds and THEY must pick up their own stuff from the main rooms. I have them put it in baskets that they then take in their rooms. I can only stand the clutter for so long. (I don't even look in their rooms any more!)

I tried to do some research before I posted this question...but quite frankly, I just am not grasping it... You posted that you were diagnosed with "Hyperadrenergic Neurocardiogenic Syncope". I have heard hyperadrenergic in reference to POTS, but never to NCS. My question is, what exactly does hyperadrenergic mean? In laymans terms please since it seems many of you are so much more medically advanced and/or have been in the POTS world a lot longer than me. Just trying to understand some of the buzz words so I can grasp our differences.

I was also on meds during my TTT. I didn't expect anything to happen as I was well controlled and had never fainted in my life. Half way through they put a nitro tab under my tongue. I slowly started to black out. It was NOT a big deal. They ended up keeping me overnight however due to the severe "seizures" I was having after the test. They said it could be a symptom of NCS(neurocardiosyncope) after a faint. The seizure part was terrible and I was sick to my stomach for two days. I personally don't get the TTT. OK, so they made me faint with nitro. I still haven't fainted otherwise (although I get a little lightheaded when my bp gets too low while standing still). They didn't change my meds or do anything different after the test. It is a test I will refuse if they ask me to do it again.

Firewatcher, I have been experiencing similar symptoms lately. I am on a beta blocker. I had to cut it in half because it suddenly started working "too well". On the half dose I have periods of standing pulse of 65 that I translate to be about 85-95 without bb...which I would term normal heart rate. Prior, without meds my standing heart rate was 120-150ish, with meds never under 85. I am really tempted to just go off the bb, but I feel really good and I'm too chicken. I still get dizzy if I'm standing still for too long although during the periods of "normal pulse" I do experience a much better standing BP. Keep the Faith!

Firewatcher, I have been experiencing similar symptoms lately. I am on a beta blocker. I had to cut it in half because it suddenly started working "too well". On the half dose I have periods of standing pulse of 65 that I translate to be about 85-95 without bb...which I would term normal heart rate. Prior, without meds my standing heart rate was 120-150ish, with meds never under 85. I am really tempted to just go off the bb, but I feel really good and I'm too chicken. I still get dizzy if I'm standing still for too long although during the periods of "normal pulse" I do experience a much better standing BP. Keep the Faith!

I am currently experiencing very little POTS/NCS symptoms(although still can't stand still without bottoming bp) and feel the need to excercise more than walking. For those of you that can excercise, would you recommend a rowing machine or a recumbent bike? I don't have experience with either but could afford a mid-range product. The potsrecovery website (Dr. Levine's Protocol) suggests rowing machines are the best... Thanks.

My docs tested me while I was on my bb. Although my hr was very well managed, I still failed the ttt. They also did the 24 hr urine for catecholamine levels. I didn't know bb could affect the test!

lissy, My stmptoms sound similar to yours, although I am on a low dose bb now. I have also been doing great the last couple of weeks. The last couple of days we have had rain/cloudy skies and I have the brain fog, lower than normal bp, some dizzy spells, and have to rest more than normal. Still not anything like the beginning. So I have to agree...it's the weather and we can look foreward to good times again!!

So I went to an Endo. My 3 hour glucose test showed high fasting and glucose intolerance, but just a hair below diabetic. They still put me on diabetic meds. They also gave me a glucose monitor. I thought I'd use it a few days before taking the drugs. EVERY time I checked my levels (fasting or after meals) they were completely NORMAL. Then, I happened to take it after I took my bb. My levels spiked for 2 hours from 30-50 points. When I had my 3 hour glucose test I had JUST taken my bb (while in the waiting room). Now I have to find out if I should take Metformin(diabetes med) to counter-act the pots meds. Sigh.

Garrett, I take fish oil. If you don't like the "burping" you could try Krill, it's supposed to be better, but I'm afraid to take it because I have a slight shellfish allergy. I had my first "pots" symptoms in early March of this year. Since then I've started back on CoQ10, B complex, D, multi-vit, and a low carb diet. Docs believe my trigger was a virus and thus have been telling me it will go away. I am beginning to believe them.

I'm currently on a low dose beta blocker 2x a day. With meds my laying pulse is btwn 50-54 and my standing is btwn 88-110. Well, today for 3 hours my standing was 66-68!!!!! It's up again now, but I'm hopeful. Does this happen to anyone else? Could I actually be on a road to recovery? I don't know how to think. I'm actually giddy.

I had the same thing happen on Monday. I took my bb but my hr and bp both went up pretty high. I realized that I took my morning bb with breakfast and it wasn't absorbed properly. I have to take mine on an empty stomache (no food 2 hrs prior or 1/2 hour after). I was fine with the next dose. I hope your problem ends up as easy to fix.

I tan easily, but have always gotten tiny water blisters on my arms and the tops of my hands. Just recently I began having a reaction to the cold also. Cold urticaria. If my hands/feet/face get cold I get hives and I get the bright red rash on my face like from the heat. You can test this one yourself by putting a piece of ice on your forearm for 5 minutes. Check it in 15 and see if you have a hive. Mine looks like a pancake. I can get it even if I'm just cutting up cold meat for dinner or peeling an orange. Nobody can tell me yet if it's related to pots in any way.

On a side note... Being a newbie to meds, I didn't understand the importance of taking pills on-an-empty-stomache or with-food. IT IS VERY IMPORTANT. I took my bb yesterday with my breakfast (first time) and I believe this is why I had my setback. The bottle says on empty stomache. So my pills became less effective due to the way they were absorbed by my body. Ahhhh...the things we learn.

The last couple of days I have felt WONDERFUL. Seriously. Like pre-pots. Then, while I was helping my 8 yr old daughter with her math my hand started siezing and I started the uncontrollable shaking. When I took my sitting bp it was 165/85 and my hr was 115. The last few days I have been hovering in the 110/70 and 60 range. (My highest at other pots moments has been 200/110 and 185). But I have not had a HIGH spike in over a month. I managed to calm down and my body settled down(with the help of 1/2 a xanax). A couple of weeks ago I cut down on my bb(to 12.5mg atenalol 2x a day) because my bp and hr were too low. Maybe I went too low? They started me out on 100mg a day but I have had to slowly cut it back because of the bp/hr lows. Does anybody else have "moments" with high bp when it is usually low? My kids (two 8 yr olds) ran over to me and started praying (bless their little hearts). My son was crying and wanted to call 911 because of the shaking. Of course this is my husbands late night. He normally shields them from this part of pots. Ggrrrrr. This is so frustrating. I thought maybe, just maybe I was beating this thing...

Thanks Firewatcher. I needed a kick in the pants. I just made an appointment with an Endo....

As I read (search) posts I keep seeing that POTS can be secondary to diabetes mellitus. Is this good or bad? Is "secondary" significant? Potentially curable? How do they know? Can anybody explain what that means or point me to a website/link/publication? And no...I have not been to an Endo...my primary doesn't think I need to see one.

I get this and have had it for about 4 years. Doctors cannot find a reason for it happening. Mine are mid cycle and the "contractions" can last on and off for 5 days. They can happen anytime of the day but most typically happen as I'm going to bed and wake me up a couple of times a night. They've been so bad that I've thrown up (yuck..sorry). I've considered a hystorectomy but I'm 48 and pray every month for menopause, although I'm just starting peri so I doubt it will be very soon. Meanwhile, I use heated rice bags, and tighten my muscles as much as possible with mini-crunches (it seems to tire the muscles out faster). I'm on an ovulation pain website where a lot of the women talk about "knife like" pain and other colon issues when they get their pain.

Reading your posts has made me realize what a baby I've been lately. You all have so much you're going through and you still have time to "help" each other through the every day relentless ordeals of your situations let alone getting through them yourselves. My problems are nothing compared to what most of you have and I pray (don't know if I can say that in the forum), but I am and will continue to do so for all of you. You are inspirational. God bless.

I have recently been diagnosed with POTS and NCS as well as a couple of blood clotting disorders (predisposing me to clots), hypertension and today type 2 diabetes. I don't get it. Three months ago my doc gave me clean bill of health (with the exception of high cholesterol). Now everthing is going to h--- in a handbasket not to mention the onset of anxiety (which I NEVER had before). Why is everything hitting at once? I WAS a healthy 48 year old (a bit overweight) but active. Could it be perimenopause? This is crazy. One step forward, 3 back. I feel the urge to throw in the towel. Ugh.

Three weeks ago I had a severe attack of high blood pressure (195/110) and increased pulse(185). After 3 trips to the ER, my doctor put me on 50 mg atenalol twice a day. That worked great when I was at the height of my "attacks", but now it's way too much. I cut it down to 25 and I still have a resting heart rate below 40 and my bp frequently gets below 100/50. I should have taken a pill last night, but was scared to. I ended up having another episode last night with elevated bp and pulse. The doctor is unwilling to diagnose POTS but has diagnosed NCS with a positive TTT. How do they treat the standing pulse rise without affecting the resting rate and low bp? Question: Does anyone else have these kinds of syptoms? Do you just live with it? Take meds? When I have an attack my BP and pulse rise quickly, I get extreme shakes, pain in my arms(almost seizure like), chest pain(although not too bad), blurred vision. Mostly just scared out of my mind and afraid to be alone. Sorry for the consfused post. I'm confused.