Neshema's thread about starting a new bb and feeling awful reminded me that I had wanted to see if people noticed a difference with weather temps - specifically heat and bb's.

So far, all I know about my condition is that I have POTS. I've been on propranalol for almost 2 years and it improved my high heart-rate. I was skeptical about it since I already run such low bp, but it seemed to help me meet in the middle for awhile...not too low bp/ not too high hr.

However, I've recently hit the wall with my bp.
For two days checked for hours to get my bp, but if its too low, my hand-me-down auto bp monitor will not read it...just gives me "error" message. Too low must be with Systolic in 60's and don't know diastolic as it just won't register. Anyway, I know meds stop being effective after awhile sometimes, but I was also wondering if the low,lows might be related to our heat wave. We were in the 100's for 3 days last week and upper 90's several days prior. The second day of the 100's I just could not function. That's when I couldn't get a reading on my monitor.

So, I've decided to go off the propranalol till I see my new doc. My hr is back off the charts again, and the nervousness/shaky feeling is turning me into my evil twin (no patience! noise intolerant, stimulation over-load), but knowing whats going on makes it somewhat tolerable. I am wondering though, whether the heat may be the cause of the low bp rather than complications with propranalol.

However, I've also gained 20+ lbs in the last year and can not tolerate that! So, I figure I'll see what the doc says, but am wondering 2 things...

Anyone else have the extreme low bp with heat even while taking bb's.

And, anyone else associate weight gain with the bb's. Just thinking it just slowed my whole metabolism down too much? I was much nicer, more patient and layed back (a slug)on bb...off the bb's I feel like I'm inside a pinball machine and all the noise and knocking around makes me mean- but alive. :~

Sherry, I'm going to throw a curve ball at you here. But PLEASE read this and take it to heart--someone once tried to tell me this on the list and I thought she was--well--different in symptoms from me.

NOT SO!!!

I too recently tried BBlockers--and at first thought them WONDERFUL! Then I started noticing low BP with now a VERY low pulse (50) when lying down.

And started getting symptoms when I stood again. So I tried often to take my BP and the machine couldn't get one. I figured it was again--too low. I even went so far as to get another BP machine--changed batteries--all sorts of stuff.

Finally, after standing 5 minutes and retaking it over and over it registered once. And BOY was I shocked! My bp --with the SAME symptons I'd had when it was low (except I'd added a headache if I stood too long) was --get this--171/151!!!!!! Pulse was 109--high--heart pounding--but it was NOT as high as I expected--instead my BP was!!!

BBlockers, I now find, can have this effect on some of us! Some ANS centers have stopped using them for this reason!!!

Beta blockers may NOT stop symptoms--but may instead morph them into displaying in a whole new way!

YIKES!!!

The reason the machince couldn't register my BP was NOT that it was too low--as usual--but that the top and bottom number were so close together it couldn't pick up the pressure points!!!!!

Needless to say I got off the Bblockers--slacking off over the space of a week. But am STILL now having this problem.

A freind from this list who called to talk one day also had this problem--and it took 6 WEEKS to get the bblocker effect out of her system! During this time she had to be VERY careful of standing for fear of stroke from high BP!!!

PLEASE! Assume nothing!!!

Keep trying to get a BP WHEN STANDING--you may have a new problem you don't expect!!! And may need medical care (or at least to lie down quickly)

Again, another list memeber tried to tell me this and I did NOT listen--would NOT believe it was possible for ME to have HIGH BP. But now it is!!!

Hope this helps!

Sandy, this is a bit off topic but you mentioned bb's stopping working as I've heard with a lot of meds with this illness. I was wondering if you had similar experiences with vitamins. As many on this forum I take a fair amount of vitamins but I often wonder if after so long they are really doing any good....should I stop them for a couple of weeks or so and restart them??

Donna

Long time no see guys...

I take 60 mg twice a day and my heat tolerance has gotten so low that I can not even walk from the car to the house some days.

Not sure if it is the beta or not, always just thought it was the condition.

I will say that when symptoms started, it wasn't for a year that the heat really bothered me.

Something to keep in mind. I just had an appointment with Bev I had to cancel, would have been good to mention.

Good question--don't have an answer tho am going to the doc today to get vitamin D results which "should' give me a clue on this. But I've only been on D for a few months--so I don't know if I'd show yet or not for this.

I thought this "spell" of being hyper adrenal for two years had just drained me some--and once I gothting back to narmal levels then I'd just need to supplement a bit to keep them there. Seems that's not so. D went for teens--to 57 (a good reading!) back to 20's--even with sun and continuing to take 1-2,ooo units per day-- in the space of 2 months?

I will say this. The body response to having enuff "d" is to darken skin with melatonin(tan) to slow absorbtion. At first when taking 50K per week I noticed I was tanning quickly in the sun--getting very brown (new for me!) inside of a couple of weeks--which is an expected side effect of D supplementation.

Now I just noticed yesterday that I'm very white again??? But still going in the sun daily and still taking D???

But I am taking less now--(tho more than when I first slacked down). Which sort of tells me maybe I'm still not getting enough--even though I'm now taking 2-3K per day AND getting daily sun it seems maybe not to be enough?

Again, I am to get test results on D levels today--tho blood was drawn two weeks ago now (these tests are the "send off" kind.)

At this point I'm just trying to get a "fix" on how much I need to stay in the normal range so I can start osteoporosis meds I badly need.

Seems I need LOTS more than you'd exepct? Have no clue why. GP is confused to the point of not beleive lab results? My guess is next he'll decided I'm not taking vitamins that I claim to be taking. This dis-belief has cost me one doc already. If it comes up again, all I know to do is to offer to come to the office for injections?

I really don't know how to deal with these docs, folks! Any ideas?

Oddly, since you mentioned this, the doc noticed that one D test showed lower--tho I'd been on vitamins? He re-did it two weeks ago thinking the lab was wrong?

LOL want to bet that's not the case?

My body can do 100 impossible things b4 b'fast!!!<chuckles>

jacobsen,

I am on the propranolo as well. The heat really messes me up. The other day my bp starting climbing after I stood up. Stayed standing for another couple of mins and it was still going up. I stepped outside with my monitor, stood on my porch and my bp spiked even higher. High blood pressure and low blood pressure you feel the same. Either one could have happened to you. I know there are times that I will check mine and my heart feels like it is beating normal. (chest not pounding) and my heart rate is 120 or higher. Heat has a huge impact on us with this condition. I live in florida so it gets hot here too. Last few days its been nothing but rain from this storm fay so that has been a challange as well. I get symptomatic with rain too. But I wouldnt come off the bb's because since you didnt get a reading then your bp could have been high or low. Even when my bb spikes up I still continue to take my bb because in a couple hours I will have low bp. You will only mess your body up more by coming off a medication and then going back on it again when you need it. Trust me I know I experienced this by stopping my midodrine and florinef (doctors order) and then when my bp crashed too it again and within 10 mins of taking it I went into hypertension. So I wouldnt recommend you stopping the bb. I guarantee it has something to do with the heat. Ask many of us who lives where it gets 90's-100's.

Hope this helps
Misty

Hello Everyone!!

Growing up I enjoyed the warm temps. but ALWAYS got a headache after returning indoors and never knew why. Never really questioned it either! But was so sick of getting sick! So,I was excited, but sad at the same time, to find out why. I do not sweat!! Sounds odd I know, but it is true! I found out by having a Thermo.Sweat Test done. I now spend the summer months mostly indoors and am looking forward to the snow!! I take Florinef and Cortef which together have helped me a great deal!! I been taking both meds. together for a few years! Hope this helps someone!!

Thanks for the replies.

I guess I'm just going to see what my new doc has to say...I'm scheduled for a visit on the 8th. So excited to see someone who is versed in this condition. Don't know much about him for sure yet, but in his bio it says that he schooled and did his residency in Toledo, Ohio. That's where Grubb is so I'm hoping....

Misty, I moved from AK to get out of the constant cold. I could never get warm and was always miserable. Now, in OR we have actual seasons! I love the heat, but have discovered that it doesn't love me! I love the feeling that my "core" is warm as it seemed like I was an ice-cube before, but on those super-hot days, boy I just feel like a total slug. Luckily most of summer is not that hot here!

Sandy, Thanks for the info on the reverse affect of bb's. I had never considered that my bp could be high! I just went in the room to check...set the pump pressure higher so if I'm up there it will read it...but, that's not the case at this time. I was 82/60 fairly normal, but too low. Not the low, lows though! However, I will keep the pump pressure up so that it can catch the upper pressures if that were the case. Wondering though, since bb's (in my understanding) are actually prescribed for high bp and I'm only taking them to regulate my hr, how they can cause high bp. And, if YOU don't take bb's now, do you still have high hr and what do you do about it?

Thanks all!

sheri