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Debbie Rose

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Everything posted by Debbie Rose

  1. Oh Yes, Internal heat !! I live off of freezer pops !! They cool me down. I am way past "hot flash" time but its like a really bad version of it. And my temp goes up 2 degrees when it happens. My electric bill is crazy this summer Debbie
  2. I had burning of my feet years before I developed the parathesia-numbness, tingling and loss of senstion of bothe my feet and 1/3 up my legs...they tell me it "could" be my dysautonomia but since I have alot of back issues it could be that too. Have not ha EMG to fine tune it. Its a bother but not worth the out of pocket $$ to find out why
  3. Meant to post this in early June Debbie
  4. Hi ALl, Its been a while since I have followed here, been dealing with different medical conditions. I broke my foot and was in a brace and no sooner that came off I developed a UTI and once that was fixed, I developed pneumonia. The Xray that confirmed it showed a possible neoplasm. I had to wait 6 weeks before second xray could be done. That was yesterday-and the "opacity" is still there. So next step is Cat Scan and then a Broncoscopy and biopsy. I have been fortunate to never been in hospital all these years so I needed some advice. Has anyone had any odd reactions to Cat Scan dye/contrast??? How about anesthesia response? Precautions? Warnings? In the past I have had issue with the lidocaines as I absorb them more quickly than others;but otherwise no other issuess before. I would really appreciate any assistance you could provide Thanks Debbie
  5. My CNS has been holding its own as long as I don't do anything stupid. And I was feeling good about my progression of exercising too. I progressed in walking to almost and sometimes a little more than an hour walk. This is on sidewalks so it is uneven and at times there are hills to go up. Then I suddenly get foot pain and it slowly gets worse...go to Ortho and they think its stress fracture and BOOT me!! Just happened to have bone density test scheduled and it comes back with both Osteoporpsis of my thigh and back bone with osteopenia noted in wrist and back! OKAYYYY! Now on fosamax even though I have always had plenty of calcium rich foods in my diet. See Ortho after 5 weeks, wants 2 more weeks in boot....ok... And suddenly I come down with a Raging UTI !!!! For the first time in several decades...so antibiotics and force fluids, vitamin C (already doing) Then finally out of boot, no UTI and things are fine. Get into my compression capri, t-shirt and stockings for my visit with specialist(for CNS) and all goes well but I end up wearing this all day. Body not happy. I am post menapausal ladies so you understand changes that happen in "the nether yayya's" I was miserable for 2 days, go to GYN and besides the obvious there is also a yeast thing going on...get med and off I go and feel better. The Clinic at Duke I go to for my CNS is always very crowded, cardiology, heart transplant, EP studies-you name it. So 3 days later I have scratchy throat and a tickle,goes into cough, congestion, headache, low grade fever of 99.2 (but I run 96.8-97.3) and the cough gets worse, congestion no matter what I try ( within my limitations) So what is going ON!!!!! Do our immune systems tank after a while? This cold started friday and its worse ! I think I now have a sinus infection....so is this something I need to look into? Has this happened to others? I would appreciate some knowledge and advise, please
  6. Somewhere in my memory of anatomy I seem to recall that it has to do with the position of the major blood vessels going to and from the different heart chambers and that is is quite normal. If my memory serves...hope that helps Debbie
  7. Brokenlittleteapot- Welcome to our group! You will find lots of help and info from a lot of friendly people. I too have NCS and it is a tricky condition but each of us experiences it a little bit different which makes it so much harder to manage> But hopefully you will find some answers and friends along the way
  8. Welcome!! It sounds like you are doing alot of the right things. Work slowly at building up stamina. I started at 10 minutes every other days and built from there. It took me almost a year to build up to 50 minutes of slow walking 5 out of 7 days, but it has helped me feel better. But I also follow a regimen of fluid intake, salt intake, medications, spacing out my activities-limiting the times and giving my body plenty of rest between active moments. Everyone experiences dysautomonias differently but you have found the perfect place to connect and find friends and facts. Hope this helps
  9. Blizzard-MCAS !! I just reviewed the web site you tagged- WOW!! My first "episode" was being stuck at a baseball game in early May with temp in the 70's but full sun leading to a reaction I thought was heat exhaustion and had to go to MD-She thought it was MS and thus started my research....5 years later TTT positive for NCS but alot of my symptoms could be MCAS as well. So an Allergist is who I should go to for diagnosis??
  10. The first 2 years after the initial flare and thru the diagnosis of my dysautonomia-NCS, I have had the breathing issues you describe. I still do to this day as my meds start to wear off or in the eve when I am tired. Its a common part of dysautonomia for some of us. I take deep breaths to compensate and do a bit more yawning-especially once I am in bed and lying down. I have sleep apnea and so wear a CPAP which was difficult to get used to as well. Sorry you are going through so much, I hope this info helps
  11. Blizzard-I take a high dose of vitamin D-5,000 one day and 10,000 opposite days. I have been doing that for years and my range fluctuates between 38-58 on my tests-which is mid-range. I started Calcium with Mag+ and Zinc in January. p8d-MY immune system hasn't been challenged lately because I rarely go out. However in March I was feeling better on some days and ran errands, which caused exposure to others plus dragged my immune system down-live and learn Pistol- Sometimes I am so concentrated on the physical, I forget the emotional. I have been under tremendous stress lately trying to re-submit forms to continue my LTD from my employer while waiting for a date on my SSDI court appearance. That could have drained my immune system right there, thanks for the reminder Always-thanks for the well wishes, they do help
  12. My CNS has been holding its own as long as I don't do anything stupid. And I was feeling good about my progression of exercising too. I progressed in walking to almost and sometimes a little more than an hour walk. This is on sidewalks so it is uneven and at times there are hills to go up. Then I suddenly get foot pain and it slowly gets worse...go to Ortho and they think its stress fracture and BOOT me!! Just happened to have bone density test scheduled and it comes back with both Osteoporpsis of my thigh and back bone with osteopenia noted in wrist and back! OKAYYYY! Now on fosamax even though I have always had plenty of calcium rich foods in my diet. See Ortho after 5 weeks, wants 2 more weeks in boot....ok... And suddenly I come down with a Raging UTI !!!! For the first time in several decades...so antibiotics and force fluids, vitamin C (already doing) Then finally out of boot, no UTI and things are fine. Get into my compression capri, t-shirt and stockings for my visit with specialist(for CNS) and all goes well but I end up wearing this all day. Body not happy. I am post menapausal ladies so you understand changes that happen in "the nether yayya's" I was miserable for 2 days, go to GYN and besides the obvious there is also a yeast thing going on...get med and off I go and feel better. The Clinic at Duke I go to for my CNS is always very crowded, cardiology, heart transplant, EP studies-you name it. So 3 days later I have scratchy throat and a tickle,goes into cough, congestion, headache, low grade fever of 99.2 (but I run 96.8-97.3) and the cough gets worse, congestion no matter what I try ( within my limitations) So what is going ON!!!!! Do our immune systems tank after a while? This cold started friday and its worse ! I think I now have a sinus infection....so is this something I need to look into? Has this happened to others? I would appreciate some knowledge and advise, please
  13. I was recently diagnosed with osteopenia and osteoporosis which surprised me because I drink milk and eat cheese and yogurt almost daily and am on supplements. They say long term use of steroids can cause it. I was on fludrocortisone for 3 years before switching to midrodrine, could that be a cause???
  14. My Brady was occurring before my POTS diagnosis (actually NCS) and that was part of why they had a hard time diagnosing. At rest I am 45-55, so my HR of 120 was HORRIBLE for me considering my resting, and my BP would drop too. It took a tilt table test to define it. If I go from standing to lying flat my heart actually pauses and I briefly feel like I am passing out. But the body is a remarkable thing and has alot of "safety" built in. Not that I go from standing to lying abruptly at all, now that I experienced it, but sometimes I forget. So I still have my symptoms, I am on midodrine now-which helps. Was on fludrocortisone but its effectiveness wore off. But beta blockers lower my BP (tried it decades ago for migraines) so I stay clear. I have clonazepam for anxiety/chest pain
  15. I get the "soul-crushing" fatigue right after exercising with tachy and shortness of breath. The HR and breathing go away with 30 min of reclined sitting but the fatigue lasts all day
  16. So sensory overload is a POTS thing ??? Thank goodness!! I thought it was a mental thing. My sister,when she gets "chatty" can tire me out in the worse way. Thankfully she has learned over the years just how far she can go. And I generally pay extra for the grocer to shop for me so I can just pick it up-crowds are horrible!!! And family gatherings-my brother get so loud when they talk politics and stuff- I just want to leave the room!! Well good to know I am not crazy
  17. From what I understand SSRI's need to be tapered off to prevent Seritonin "Storm" please follow a doctors advice on this (unless switching to another one)
  18. I usually take a bath but used to love a nice hot bath-now I will do a hot soak but then turn the water lukewarm to wash my hair under the faucet and rinse off. It is still an exhausting process and have to admit I do it less often now so I have more energy on other days
  19. I started out with recumbent biking with a simple peddler and did well. Then in January I started walking with my neighbor. She has a bad back so we both go slow. Over 8-10 weeks or so we were walking for 50 to 60 minutes-thru the neighborhood and averaged around 2.5-2.8 miles in that time. I finally started feeling good about walking and even looking forward to it. Then I started to have foot pain on the outer aspect. I rested for a week but still had pain. So I went to an orthopedic clinic and they "thought" they saw a stress fracture at the end (near the arch) of one of the foot bones. SO I am in a boot for 2 weeks. GRRrrrr. But I too had extreme fatigue once I sat down after my walks and it was completely debilitating for hours. But I made an effort by afternoon to try and do a few small chores and did manage it. Hopefully, once I can walk again, I will try to go more slowly with my progression and see if I can stop the developing fatigue. By the bye-I had bone density test and found to have both osteopenia and osteoporosis-oh yeah
  20. What meds do you take? I take my midodrine before I get up and wait 30 min and get up slowly
  21. Finally!!! My Wisteria has finally bloomed for the first time ever!! I have been babying the plant for 4 years and this was the year it is happy enough to bloom. There are only a dozen or so but it's a start. YEAH !!
  22. So, just a question-have you been ruled out for MS? Multiple Sclerosis? or any other myelin degenerative disorders? Debbie
  23. Maybe not totally related, or not at all but I had severe headaches daily that would come on as the day wore on. I do also have migraines-have had since puberty. Sometimes Maxalt helps some of the time if I have caught it early enough. Other days I hide under the covers with a heating pad and just whimper-sometimes it can go on for days. However I also discovered something that has taken yers for me to learn. I have always been slightly anemic-not bad-just one or 2 points below normal. Each year the recommend iron after my GI studies find nothing. However my stomache does not appreciate the pills and the liquid is "ugly" and so I was never good as consistency. But a few months ago-before the holidays I spent 2 weeks diligently taking my iron and BAMMM!!! my daily headache went away. So since then I have been religious about taking my iron pills and my blood work shows I have a healthy HGB and HCT. My other issues of "ferritin stores" was too expensive to do, but I know I feel better and thats what's great Also lack of enough fluids and dehydration can also cause a headache for some. Just some info Debbie
  24. Do Not worry on that which can not be changed

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