Debbie Rose

TCP, So sorry to hear about your future needs of cortisol and hormones, it all sounded very scarey Hope things calm down soon Debbie

TCT, WOW,,so sad to hear, but at least you now know what was causing your symptoms what is the next step? Is surgery required? Debbie

I agree with Sarah, So sorry you are going through this. There may be a sleep apnea or other obstructive apnea going on. I recently received the diagnosis and am trying to get used to my new best friend-my CPAP machine Debbie

Years ago when I was first being affected by the heat (when the doctors thought I has MS) I found these "cooling clothes" in the MS magazine. A vest with pockets for ice packs-I use this when I get into a car in summer time. All are based on cold water soak, then wringing out excess and had wrist bands, neck wrap held on by velcro and head band/handkerchief for your head tied behind.....oddly they keep you cool yet not wet-"evaporative cooling vest-don't remember the name-remember a polar bear on ad. I wear compression clothes from chest to toes for good functional days and less if I am not going out and about, or standing for very long. I bought from Tommy Copper and got some good "sale" items...otherwise they are very expensive. Was at Walmart the other day and found some "Danskins" capri for good price and solid support too

SO Happy for You !!!!! Great News !! Debbie

Hi All, As hard as we all work to understand what is going on with our bodies and why it is happening and how best to manage things, don't forget how your mind is being affected. Just having these symptoms and the frustration of it all-testing, misdiagnosis, medications, doctors difficult advice-"exercise?? But I am so fatigued!! " We have a right to be angry about all of this but who has the time.? So we suppress until it builds so high we "POP" and a spurt of rage occurs, or irritability or sadness AND IT IS OKay!!!! Its normal and as long as it is "self limited" it will pass. As long as you are safe and others around you are too, its OK to get emotional...sometimes its cathartic ,too Just thought I would put that out there Recently, I was found to have hypomanic bipolar depression-I had NO manic episodes, just anger and irritability and deep dark depression. After some evaluations the diagnosis was made and I was correctly medicated.I am 62 and have struggled with depression since puberty. Last year for the first time in my life I felt "JOY" and I was happy for no particular reason, just was. So I wanted you to remember our minds responses to stress, crisis, physical change and acknowledge it Debbie

Recumbent !! Love those wheels ! but how to you see where you are going?? I have a "peddler-just peddles on a stand-which I use in the reclined chair position (with peddler on the floor) and I can also place it on the table for arm exercises. The temperature outside is too hot and humid plus we have hills here that are in the way, on the return to the house-when I am worn out-so biking is not good for me. What are Lorna Jay's?? I wear compression knee highs and leggings as well as a top-full body compression-feel (and look) like an overstuffed sausage!! LOL but no one sees me. How are your sats at rest? Laying,sitting,standing?? Do they change with BP and HR?? or only with activity? What does your MD say about your sats?? another underlying condition? Just curious, in trying to connect the dots Take your time and start slow and briefly at first-accumulate time by spreading it out throughout the day if it helps with your breathing. At first I could only do 10 minutes every other day and it took me 8 months to get to 40 minutes 5 out of 7 days-on good days. On bad days I do as much as I can but don't push it-if I am dumb and push, I regret it the next day-and I am stubborn so I have had many a dumb day LOL!! I hope things get easier for you soon Debbie

Alot of great ideas!! I try to get there a day early to recover from the travel and schedule breaks as well. And depending on the weather and temp, I make short trips to see things but avoid crowds. And I too have lots of water, and a snack and have a wheelchair with me in case it is needed. And I also spend an additional day resting once I am back home. Debbie

oh,oh !! DO you have any compression stockings?? Knee highs? anything? My compression stockings, pants (capri and leggings), and shirts (tank, short sleeve and long sleeve)has allowed me to do more in upright position than I did before. I know they can be pricey but well worth it. Debbie

Are you drinking plenty of water and lots of salt?? I only ask because I sometimes forget if I don't have it right next to me and by day 2 of less fluids and salt, I am extremely weak. Debbie

So sorry you are suffering so.......do be careful with strong laxatives until you are sure there is no obstruction. My GI felt I had gastroparesis when I went thru a similar situation. Oddly enough I went on low carb low fat diet and when I stopped the whole wheat is when my bowels stopped. Who knew such a simple daily intake could affect the intestines so! Went on benifiber daily and back on small amount of wheat fiber to fix the problem but it did take a while. Hope you find a easy solution Debbie

Hi Bendy, I was a telephonic health coach first at a health center, then from home. And then they decided we all needed to be case managers with all its requirements. The level of anxiety was what brought my potsy NCS to become intolerable. On the phone with a client is no time to get tachy, short of breath,dizzy and forget all the questions you have to get answers for. And the harder I tried the worse it got. No longer able to work now....glad to hear you are still hanging in there Debbie

Darn !! Thought I had a good,medical reason to start smoking again ! My BFF used to use excedrin every morning for her caffeine boost some 20 years ago...it was aspirin, caffeine and something else if I remember it right. Unfortunately, since I had stomache issues, it burned the crap out of it so regular caffeine drinks had to do Occasionally I still crave a smoke, but the vasoconstriction the nicotine does can affect the vascular response in the heart as well as the "vessels" so be careful. Debbie

Esse- Any updates?? Debbie

So I have had a bird peck into my tomatoe for liquid which provided me with enough guilt to act. I am usually good with my bird feeders-both seeds and thistle and nectar-but this year I only put sugar juice out once and nothing else.....now I feel so bad and so I pulled out the feeders for my Hummingbirds and cooked up some sugar juice, then let it go sour and not refilling them. The tomatoe being pecked was a signal of just how desperate my hummers were. Well, they are happy campers now!!. I have put out 5 feeders at different points around my house. I get these very bossy males I call "Nazi's" that chase away other hummers but he can not watch ALL of the feeders All of the time. This has worked well for the most part. Later in summer there may be a female that acts that way too but only once her nestlings are weaned and they hatch at least 2 broods a year I love hummingbirds ! They are nervy birds who will "chitter" their opinions at you if you are not fast enough with replacing the feeders and the "ballet" they perform when 2 males (or females) are fighting is amazing to watch. And if you have a red shirt on you may find one approach you with ardor too. I placed the feeders in windows so I can always see at least one feeder. So what is your favorite birds?? Any particular butterfly that is unique or particular beautiful in your area?? Interesting trees? What beauty of nature sooths you? Debbie

Bendy-Great time to garden...its also great for those necessary bug sprays since the bees are asleep, too I have given up on my tomatoes-guess they just don't like my raised beds....the soil is correct and I fertilized every time it was due...but nope-all have cracked that were close to ripe and a few have been pecked by birds....I will keep watering (from the bottom so I don't contribute to the cracking) and see how the rest of the summer goes. Still in the high 90's AND ITS JULY!!!!! I am afraid what August will bring-oh wait-hurricane season !! LOL !! On a good note, most of my flowers are doing OK, a few flowers....Last year I planted one annual because I simply love Lantana. In Maryland it is an annual.....COlor Me Surprised!!!! They came back this spring ! one is a golden yellow and the other is the multicolor leaves on one flower-lavender,pink,violet,mauve-my favorite. And my Shasta daisy's are blooming along with my daylilies. Another favorite for ANY garden, ANYWHERE!!! is Portilucca--its a succulent that handles Texas temp and humidity!! My Mom grew these all over her back yard there-multiple colors to choose from-had to buy one for this year too So how is your garden going??? Anyone?? Anyone? Debbie

And so it is halfway thru July and the temp has been brutal !!! Now in the high 90's-97, 98 with humidity making it feel like 105-107 and my poor plants are suffering!! My tomatoes in raised beds and pots are dry but if I over water the skin breaks...and they are not quite ready to pick yet either. I spend time at dusk watering my flowers but they are just hanging on too...and I can't be out there more than 20 minutes. I guess this idea has its flaws and its not even August yet Debbie

I was diagnosed last year but feel I have had it for over 8 years with my first symptoms of extreme heat intolerance with severe fatigue following a baseball game-temp of 78 degrees F. It worsened while under the stress of working-became stressful with new "Changes" of job being difficult to meet. I think I had an adrenergic response every day I tried to work. It got better when I went on disability but ANY stress can make it extremely bad. I have a good day or 2 then 3-5 bad ones...that's about my routine. I try to continue my routines despite the ups and downs. Always hydrated,salted,trussed up in compression clothing,eating small meals along with daily exercise....but this has been my norm"" for a year now...which is better only because I have learned to manage it. Unfortunately I never have good weeks, never have had?? whichever LOL...my memory/brain fog persists,along with fatigue, HR and BP issues. Dizziness is rare now IF I wear compression clothes and get up and down slowly. Lately, if I sit too quickly my heart will pause and slow to 20 beats a min for about 10 seconds-I feel like I am passing out...but then my HR goes back to 45-55 bpm-its normal resting rate....something new...but my heart studies are all normal-HaHa. Anyway, that is me Debbie

I am on disability-long term from my job-going thru the SSDI stuff with Neurocardiogenic syncope. I think there is a hyperadrenergic thing too during stress at work. My brain fog was so bad by May 2015, I could not do my job well and was fearful of making that mistake that would end my job. I can't read unless I can read the book in a day or 2-still once I put the book away I completely forget what I read. I am lucky, my sister enjoys reading to me and will remind me of characters and plots as we go along. But I have all my bills on auto-pay since I can't trust my memory and my sister helps alot-lives with me. I tried to use post-its but I would forget to read them after I posted them-LOL!!! what a mess. I was on provigil for years to help with focus and concentration since I didn't want (was fearful of) amphetimine type meds. But I started to get severe headaches as I came off the med in the evenings so I stopped it. We can only do the best we can with what we have Debbie

Last year I was very heat intolerant but have worked out a better plan this year. I wanted to garden a little more, besides just tomatoes, and so I have been working at this. Now that it is July, I get up early-7:30-8am and get out there before it is above 85, some days I can manage 20-30 minutes (other a lot less) then go inside to hydrate and cool down. Once it is >85F I wear a wet towel around my neck and only work in shady areas and some days I can do 15-20 minutes....it is worth it to me because in March I started this process and was very mindful of the temperature every day and worked only when temps were under 80 in the beginning, but able to be out longer-especially on my knees-sitting on my feet (best position for me symptom wise). Now that the garden is established, I weed or water/fertilize in early am or later in evening-after 7pm for short periods. And it works. But each of my days is carefully managed, time and temp wise. I have cooling vest, headband,wristbands and scarf to keep me cool when getting into a hot car-the worst feeling and symptoms- before air conditioning kicks in, and they are very helpful here in NC. I am still more fatigued at end of these days versus days I don't garden but I feel accomplished and able to enjoy the flowers. Hope this helps PS-is mid 90's most days now in afternoons here in NC (Raleigh/Durham/RTP area) Debbie

I had a numbness episode on left side of my body years before any diagnosis,in hospital and all tests were negative-NOC-no "obvious" cause-LOL...Have had cervical disc issues for years now ('84) and so I attribute numbness of hands/arms to that. I also have lower leg numbness, left more so than right and all the docs say "yeah its peripheral neuropathy" but no one concerned as to cause. Again, I am old with lumbar and thoracic spine issues-so may be the cause....So I deal with the numbness-the arms and hands come and go, but the left leg numbness is hard because I can't always feel the floor-I use a cane for balance, in case. Oddly enough a neurological things like numbness is not going to directly affect the heart muscle from my understanding of things and from what my docs have said. I too have had several heart function tests-all normal...its confusing how our body reacts some time Debbie

I have dry eyes and other symptoms of connective tissue disease but my lip biopsy (that I requested) was negative. But too, I have Neuro-cardiogenic syncope and not "pots".....what ever that means. I gave up on diagnosis' a while ago because of cost and ( have no idea how darker letters occurred-lol) now just treat my symptoms and follow my EP doctors suggestions. Exposure to hot temp being outdoors always raises my body temp for several hours. Same goes with cold indoors temp will lower my body temp....anyone else notice this?? Glad the plaquenil worked. I too have joint pain and fatigue but I am 62 and family history of arthritis and I was diagnosed with fibromyalgia in 95 (think my POTS symptoms started then,really). It was the popular diagnosis in the 90's....I can't work because stress causes my increased heart rate, anxiety, drops my BP,makes it hard to breath- I think I have hyperadrenergic reaction when this happens but have not been diagnosed as such. I was just happy to get "A" diagnosis from the tilt table and no longer deemed "crazy and all in my head" Debbie

Fludrocortisone was great for me...it stopped the drop in BP when I would stand-still does drop but not as bad. I have had headaches all my life but did not notice an increase being on it and no drastic side effects are noted. I do admit to occasionally forgetting to take it and I am weaker and dizzier with bigger BP fluctuations when I forget Debbie

I was diagnosed with Fibromyalgia-very similar to CFS-back in 1995.Fatigue has been a plague to me for so long!! My TTT showed vasal/vago syncope or CGS (cardio-genic syncopy) a relative or sub species of POTS,but with most of the POTS symptoms Debbie

Wish I could write poems....nicely done. Daily I do one of 3 brain activities-one is a computer game of "Spades", the other is Majong on my computer and the third is Sudoku-going from easy to hard in difficulty....some days I can do any of these well. Recently, with the heat and doing things outside a bit, I am failing every attempt...but at least I know why-temp here in NC in the 90's and humid right now. Debbie