geneva

Hi Tearose, I have been away from home for a few days without PC access so I am just catching up on news. Sorry things didn't go as well as they could have but sounds like you are taking care of yourself. I will keep sending those positive thoughts as you await your results.

I love mine so much I have 3 of them!

I had bad experiences with Florinef. My doctor in the hospital started me on 2 full tablets and I became so much worse but he said give it 2 months to let your body adjust. This is the worst advice I have ever gotten, but at the time I still believed doctors knew best. My bp would shoot well into what they called the stroke zone and then hours later bottom out....it was a nightmare but incredibly, I stuck it out for the 2 months. When he finally agreed we should try reducing the dose I began to improve. Over the 3 years I took it I reduced the dosage to 1/4 a pill a day which I could tolerate and it did help some with sodium retention. The nicest surprise came 3 weeks after I stopped it completely. My body completley relaxed and I no longer have that 24 hour a day wired feeling or sense of dread. The lesson I learned is that while it is good to take meds that may help, trust your own judgment about dosage (I ask for children's dose) and trust yourself on whether the drug is more harmful than helpful. You are in the best position to know how it is/isn't working. good luck with your decision.

Hope your day was tolerable Tea.

I was put on lopressor -- a tiny dose -- in the hospital 4 years ago and my bp bottomed out and the dr. was shocked. He switched me to Atenolol. It worked great for the tachycardia but even at a tiny dose, I had a terrible time with my bp dropping. I stuck with it for over 2 years and then stopped and manage without a bb now. I think my variety is hyperadrenergic, although I have not had tests specifically for that, and I have read beta blockers are not good in that case. So, I guess given the nature of one's dysautonomia, bb can be good or not. Also, there are so many different ones and it takes a lot of trial and error to find what works individually.

Tearose, I also want to add my positive thoughts for you. Hopefully you are getting a good nites rest tonight and will be well rested before you start your day tomorrow. I know you have your POTS bag carefully packed so no need to remind you of anything to do or take with you! I'll just say TAKE CARE.

I also order Jobst from Ames Waker. I would just note that if you are very slender, thigh high may be a problem. At least it is for me because the tops are not tight enough around my thighs and I have tried several brands. I have a pair of 20-30 that I wear around the house because I can get in and out of them easily and keep my 30-40 for when I am going out--it takes me a long time to get in and out of them, even after years of practice!

Oh, Danelle, please strike "I am probably just a weak person" from your thinking. You are NOT....I repeat, you are a STRONG person. I know the scared feeling you are talking about because I had it every day for so long. I tried all the things that have been suggested above but I still would sit for hours, obsessing over is this the ONE time I really SHOULD go to the ER? One doctor would tell me that I would need to become "adjusted" to this feeling being a part of life and the other would say, don't sit at home and die of a heart attack because you thought it was "just" POTS. I would get so confused trying to figure out which advice to follow when I would have a day like you had yesterday. And, I am alone a lot of the time and that definitely makes it worse because you have nothing to distract yourself from thinking about your heart. I would call someone to come over whenever I could and ask them just to be in the house. I also agree about going out, anywhere there are people, like the library for example. I never thought about visiting the ER as Runnergirl said but that is pretty clever!! For me, when I went off Florinef after 3 years, I found that my entire system calmed down and these episodes are not as intense for me. I just tell myself --hey, remember when this happened a 100 times before? You didn't die, so chances are probably good, I will survive this one too. So far, so good. But, of course any time your symptoms are different it is always a good idea to get checked out. wishing you a peaceful day DAnelle.

Nina, with all you have going on, especially in the last month or so with your meds and health, I am surprised you did not cross the overwhelmed line long before yesterday. You really do amaze me. Glad that Tearose has taken you under her wing and cracked the whip to get you back on track! Take care as you cross the finish line on that second paper...then why not call out sick tomorrow and recover a little balance before you climb the next mountain.

The timing of your post is amazing because in the last month my right eye has started this twitching and driving me crazy! I wondered whether it might have something to do with all the allergies in the air but I guess maybe it falls in the POTS bucket....like all the other weird things. Glad to know that no one else has found this to be something more serious.

Hi Emily, it is amazing how dirty those filters can get!! Ours were changed 6 months ago and were pretty dirty so we are going to start inspecting them at 3 months. Mold is what bothers me the most too and we have had a very raining winter so I know that has been a contributing factor to how I have felt. I do think the air purifier is making a difference but wouldn't you know that the day we got it, we had a cool front and haven't needed either the heat or a/c!! But, we are headed back to the 80s the end of the week so it will get a real test. WIth the central heating/cooling off though I do NOT have that awful fatigue just my normal POTS wish-I-could-sleep-better-tiredness. I have adjusted to the ozone smell by turning it on for short periods of time and letting my delicate system figure out that it is OK. Oh, how fun to do things the POTS-way (LOL).

HI Corina, it is wonderful to hear from you again, but please do NOT ever feel guilty when you are not up for posting....everyone understands that around here. Of course, most of us are worriers so the absence of veterans is missed! I am so pleased to hear that you have support people who are on your side and will not give up on you. That is so important in managing a condition like ours. I hope that the doctor you will see next month can help develop a plan of action for you that will allow you to improve from where you are right now. Is this doctor nearby or do you have to travel to visit him? I can imagine that going into a rehab facility will make it difficult on your family but if it could give you any imroved quality of living, I feel sure they would be willing to make the sacrifice. It has been said many times here, but it is so true-- you can best help others when you have taken care of yourself first. Rest well and I hope you will keep us posted on your doctor visit.

Jan, thanks for the details. In our house the return and supply vents are all in the ceilings which are 10 feet high. The new air purifier has been on for about 5 hours. It is called the Fresh Air model by ECOQUEST. I don't know ANYthing about the technology other than what the company provided which is it works off UVX lighting and something called Radiant Catalytic Ionization. What I am unsure about is the Ozone it releases into the air. The material states it is a low, safe amount similar to fresh outdoor ozone levels. The ozone has a smell (not bad) and you can turn that aspect off and it still works on the RCI aspects. Since it has been on we can both feel our stuffy noses open up so I guess that is a good sign. I have asked the company to send us some information regarding the safety etc. My husband is going to be our guinea pig tonight and go back to the bedroom and turn on the unit in question while running the air purifier....I shall remain safely on the other side of the house until the results are in (LOL)

I would like to add my wishes to those who celebrate EASTER...have a wonderful holiday with family and friends.

Michigan Jan, thanks so much for your reply and suggestions. I will ask my husband if the coils were checked. I did the technician check the heating function as well because in the last few weeks we have had times where 1 day the heat was on and the next the A/C. One thing we didn't do was change the filters BEFORE we turned the units on for the first time....will make a note to do that. We are going to start changing the filters every 3 months from now on and see if that will help. I am glad to have your input on the duct cleaning. Our technician said he saw no evidence of needing to have it done at this time. I will see if my husband is willing to climb up the ladder and do the cleaning you suggest (I'm not too good on ladders!). We are going to hold off full duct cleaning because have told us it makes things worse for ahile. About 6 months ago I started the hot water cleaning of mattress pads and sheets every week and dusting down the room. I don't do the bedspread however since it requires dry cleaning so I will have to think about that. I am certainly continuing to learn more (than I might want to know) about central air conditioning and heating (LOL) we ran the "good" unit last night and while I slept well, I have the fatigue this am although not as severe. We had a cold front come in overnight (68 degrees is a cold front for us) so I am hoping we won't need to run the A/C today or tomorrow. Jan thanks again.

Well, the news from here is yes, we really are still in the 80's and inside our house last night it was 77 so not so pleasant!! I do have a cool vest but made do last nite with the old fashion kind of fans. The technician arrived this afternoon and listened carefully to what has been happening and with my husband looking over his shoulder and asking questions every step, he could find nothing wrong with the central A/C and heating units. They open everything up, checked the ducts etc but no answers. He seems equally puzzled and is going to speak with his boss on Monday and ask him to call if he has any other ideas. The biggest mystery is an occasional smell of "petroleum" from the problem unit because a roll of tape was accidently left (yes, can you believe it?) when the units were installed over 3 years ago. They found this last summer when I had to move out of the house in the middle of the night because the smell made me so sick. In the meantime I spoke with an air quality company today who I got from our insurance co. and they are going to send someone out tomorrow with an air purifier unit -- I think ECO-Quest is the manufacturer and they will let us use it on a trial basis for 1 week to see if we think it helps. Also they'll set up a test to gather samples for bacteria, mold, mildew (if present). If the purifier doesn't help, then we will bring in someone who can do all the air quality analysis tests. I hear this is very expensive so we are hoping that we find answers before then. I am too tired now to research Jan's messages but will do a search this weekend. Meanwhile, we are running the 1 unit and staying in the guest room....it's kind of fun to be a guest in your own home!! thanks for your support and ideas. P.S. yes, Emily I really am the hallmark girl!! I wanted you to look ahead and think good thoughts...so glad you are better.

Hi Tearose, I am sure you have had a long and exhausting day. I just wanted to let you know I am thinking of you and hoping that you got answers today to whatever is going on and that it was positive. I look forward to hearing more but for now, hope that you are getting a lot of rest and will feel stronger tomorrow.

MM, your instincts were right, as usual but good to have the doctor in agreement. I must say that the idea of a diuretic seems counter to what we always need to do which is drink, drink, drink. Be careful, it doesn't do too good of a job! Hope it won't take long to get the steriods out of your system.

Thanks everyone for your input. To answer a few of the questions, yes my husband changes the A/C filters every 3 months -- we used to do every 6 months when we first moved in 3 years ago when the house was new; we do have the carbon monoxide alarms and faithfully check the batteries. I even tested it when I first noticed the problem this week. My husband has checked the attic-- where the fan is located-- throughly for mold and can't find signs or any water leakage but we may have a professional come out. I am hopeful, however, that the A/C technician will be able to pinpoint the problem when he comes out tomorrow and we won't have to look further. It is very warm and uncomfortable in our house tonight. I gave my husband an ice pack and personal fan and we are making do because I refuse to turn the units back on. I would rather deal with the heat intolerance than the other problems. He jokes that he is going to pitch the tent in the back yard tonight to sleep where it is cool!!! Opus you mentioned the ducts being cleaned and I had thought of this but I have heard that it may be worse after having this done. I noticed you said only a few days so I guess that might be doable. A friend had it done and then had to fully clean everything where "stuff" fell out of the vents. That feels a little overwhelming to think about but maybe I will look into it and see what type services are available. Also, I have heard mixed reviews on air purifiers to put in your room. Those of you who have ones do you find they work well? I know they can be pretty pricey but if they work it would be a good investment I suppose. thanks again for all your ideas and support. I will let you know if we find out anything tomorrow.

I don't have long standing days either but my best time of day starts at 5 pm. I really look forward to the early evening.

WOW EM, what a great article and explanation...thanks for sharing.

This last week I felt like I was in a deep potshole and may well have been but here's the thing...we just started running our A/C (I know many of you still have snow on the ground but it's in the 80+ here!). Anyway, I have felt a very debilitating fatigue (more than the usual) and have spent most of the time propped up in bed on pillows reading and resting. Not so strange with POTS I know, but my husband noticed it this weekend as well. He reported feeling like he was drugged, he was so tired. He is out of town this week and feels fine. 2 nights ago I decided to move to another part of the house to sleep which runs off a different A/C (I also turned the one for our bedroom off). After a little while the fatigue was gone and for the first time in more than a week I felt better and had energy again. However, I got a scratchy throat and my lymph node under my chin swelled up making it painful to eat. So 2 different A/C units with different symptoms. I don't think it is directly POTS because 36 hours ago when I turned all units off I have not had ANY of the same symptoms. I have called for someone to come out and inspect but already they have suggested maybe it is just my allergies...no, I don't think so! I am so puzzled by what is going on. It just seems too coincidental that when I turn the units off I feel back to my "Pots-normal" self but with them on these other symptoms are hitting me. Any thoughts? My husband is going to buy the really good filters and change everything out this weekend and hopefully the service company can find the problem but what else can I do?

Nina, interesting about the narrow pressure because I have that a lot of the time but hadn't really thought to much beyond, that's interesting. Glad the med worked for you. Hope your dr. will be able to find something out at your visit.

When I first attended a yoga class the instructor had us do a neck roll and I immediately felt a "snap" and severely pulled a muscle. A week later I read in a book that neck rolling can and does often cause more damage than benefit particulary for people recovering from an injury or chronically ill. I would stay away from the rolls -- it was painful for me for weeks!

Dayna, good luck with your tests today and welcome to the forum.