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Debbie Rose

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Everything posted by Debbie Rose

  1. So sorry to hear all that you went through, gosh !! The raised welt could have been vascular-DUH-but of a specific autonomic root, so is very strange...and the latent response to exercise-also unusual, but I know you know how odd our conditions are...keep us updated Debbie
  2. I had very few side effects when I started mine, but was told to give it time and your body will adjust over the next month. I take one and a half pill now and I can not go without it-makes a big difference!!!
  3. ONE REGULAR SIZE TOMATO-FINALLY !! All the weird weather here and my over watering causing skin on tomatoes to crack , I gave up and neglected the tomato plants for a month and now have ONE ripe tomato-yeah me!!! LOL ! Live and learn Half my flowers succumed to the heat but my 2 favorites-Lantana and portaluca-both are heat tolerant and are thriving well with beautiful blooms
  4. Hi, Hanging on, Yes the humminbirds heart beat was so fast it was a "thrill" feeling to it. Buddy sounds great! Skye would surprise me occasionally with hiis own version of things. Once my dogs were arguing over a bone and I intervened loudly and Skye said "What's happening?" his own doing in the phrase-amazing. Well my hummers are fighting and chasing each other all over my front and back yard and I have 9 feeders out there...LOL..greedy little suckers...And I finally put out my thistle sock for my goldfinch and they are happily coming round now too-amazing colors!!
  5. Thanks for the information I don't think I will be pursueing it right now, too expensive,sad to say
  6. Good luck in your search. I go tomorrow to a neurologist for my headache evaluation and am hoping he has knowledge of CCI and CHiari malformation and the correct kind of MRI to evaluate it. I have a hard time with new doctors since all these years trying to get my diagnosis and all the doctors who said it was all in my head....but my headaches are getting worse and more frequent so I have to try. Debbie
  7. LOL ! Zebra Unicorn !!! I am a visual person and I can see her quite clearly. Does your daughter get any pre-syncopal symptoms so she can tell them to stop before she passes out? Or does it happen that suddenly? How can she hope to heal with all their pushing her symptoms of all her conditions to max! They need to learn more about her and "listen". Hope things improve soon Debbie
  8. I too have neurocardiogenic syncopy. Florinef .015mg has been a savior to me! For the first year I did very little more that sit reclined in my rocker/recliner and attempt chores in 10 minute increments. Acceptance came slowly but this website and these friends have helped me manage things realistically. I drink a liter of water first thing in am, along with eggs with lots of salt. I try to get 2 1/2 to 3 liters of water a day and keep the salt up too. On days (about every other) that I plan to do things-clean house, work in yard, go shopping, I wear compression clothes-not just knee highs but leggings and tops too. It helps stabilize my BP. I can manage for about an hour then I must sit/recline/rest for 20-40 minutes depending on how I feel. I eat small meals since I have gastropareisis and a weird sugar/dump/bloat thing too. After the first hour and then rest, I have to honestly access how I feel to do more, less or anything at all. It's a judgemet call. I try to nap in the afternoon and get 9 hours of sleep. I use a cane for balance when I am out and about. I have a peddler that I use in front of a reclined chair and started at 5 minutes 3 times a week and built up from there. Start slow, one small thing and then next time add a minute or 2 and listen to your body, do not push-it'll smack you down the next day....read alot and calm down and as you adjust, small things will start ti improve Good luck, Debbie
  9. So what doctor diagnosis EDS?? Debbie
  10. I have had to simplify it even more by saying-The part of my nervous system that controls my heart rate and BP and other functions is not working correctly My Mother is sympathetic and is OK with it as long as "she didn't cause it" The rest of my family along with many friends thinks its all in my head and that I am "lazy" until I explained the TTT results. I have lost alot of friends because you can't plan ahead with this.
  11. I have had weakness in my legs and hips for years and was diagnosed with neuropathy, and need a cane when out and about just for balance. I also have numbness in both legs so it makes it difficult to walk too. SO a Neurologist-as stated above-who understands neuropathy, is important 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
  12. I imagine the therapists just aren't figuring in her Dystsie and are pushing her as they would a "normal" (no such thing) person. Have you had the time to talk to her specialist (for dys) about what is going on?? Maybe she needs to build up to it more slowly at first considering her response. Glad to hear her pain is less now Debbie
  13. Dizzy Girls, Did your daughter have the surgery?? I was curious if they found more when they went in? And was the MRI a standing MRI ? I have been reading alot since I read your comments on cranio-cervical instability and alot of people mention that Chiari is less likely seen in typical laying down MRI, yet it is very evident on a standing one...Just a thought I ruptured 2 discs in my neck C-3 and C-4 way back in the mid 1980's and I think that was the trigger for my issues. Also there was an OPRAH show back in the 90's talking about Chiari and I had a MRI done then, but laying down, and it was negative. But I wake up with a headache in the occipital area every morning which may fade on some days or get worse thru-out the day. And they talk about the "bobble-head feeling" and I can attest to this feeling too. Alot of the symptoms of Chiari match POTS (I have the cousin-NCS) and so it is hard to say. I also think I have a mild EDS (if that is possible) I would love to hear how your daughter did Debbie
  14. Right side sleeping has always helped me Question....Anyone go to get checked for sleep study-this not only checks for sleep apnea but restless legs as well. And with POTS and the autonomic system, there is a type of apnea that is called "central" sleep apnea related to central nervous system and not all all because of short neck or overweight and other reason "usually" assumed by apnea. I tested positive for sleep apnea-but I have my Dad's short neck and with a slight weight problem I have a double chin which all can cause the apnea....Once you get used to it_ - IT IS AMAZING !!!! I sleep soundly for 4-6 hours before my bladder wakes me, and then back to sleep for 4 or more hours, and no restless legs either. Just a thought
  15. Fitness Kelly- thats where my german pinscher's growl and bark come in handy-put him on a leash and go out to porch-they don't last long. I have great faith in my own religious beliefs but hate it when I get solicitors coming to speak about theirs-want to put up sign that says "No Religious conversions here, AMEN!"
  16. I have experienced Dis associative episodes since I was a teenager, and brain fog seems very similar to me....I described Brain fog to my sister as "Sitting in the chair with coffee on table and TV on but I am staring out at nothing with no thought process....every 10 minutes or so a thought comes-I should be doing something_-but then the thought fades away" I can be like this for a few hours or entire days when really bad. I never feel exactly out of body but close to it. My true episodes of disassociation does have me drifting off and out to another place-but at 62 they are not often anymore...then again, I was finally diagnosed with hypomanic bipolar (also known as bipolar depression) and started on Latuda a year ago and don't recall a disassoc episode since then-huh! Well there ya go
  17. Hi Farmgirl85, I too eat small meals and low carb/sugar meals. I used to be a sugar addict but am now a reactive hypoglycemic if I eat something too sweet all alone my sugar can drop extremely low.. So if I want something sweet I will have a hard boiled egg or baby bell cheese and have a "small" amount of chocolate (my weakness) Long before I knew what I had, and after being diagnosed with fibromyalgia I could no longer take hot showers without cutting the shower short and collapsing onto my bed short of breath and tachy. I can get chest pain just sitting in my chair and I ignore it now unless it lasts more than 5-8 minutes. I take half of a 0.5mg clonazepam for the chest pain and my anxiety episodes-and it does help It does sound a bit like gastroparesis too, which along with the numbness and tingling and dizziness all go together. My GI guy did not feel I needed testing as the symptoms were right on for the diagnosis Hang in there and go slow with your dietary changes, our bodies are sensitive to changes too
  18. Tried pot in the 70's to early 80's, then I had a child and became a responsible parent-"Snicker, haha, oops, yeah"....but I don't know about some of the side effects besides making me mellow. I am a bit overweight and struggling to loose weight so the "munchies" would not be fun.... and I am single and too fatigued, et. al. to date let alone start a relationship and that stuff back in the day made me "crave company" if you get my drift (LOL) so I wouldn't appreciate that side effect either....so no, not intrested in seeing if it helps
  19. Ashc, I too love birds and had a parrot for 8 years that talked and was very special to me. Hi, Hanging by a thread, I too had a parrot- a little blue Quacker-a bit bigger than a conure (bff has one). I had had him for 8 years with no problems and then suddenly within a year (2 years after symptoms of POTS , and my suspicion of MCAS) I became allergic to his dander. I was heartbroken.! He too talked "Momma", "giva a kiss" followed by smootchy sound, " I'm beautiful Skye", and "Skye's a dirty bird " was he wants a bath, "Hiya cutie" and so much more. I loved him so, he enjoyed hanging out on my knee or shoulder and was such a comfort when I had no other options but to sit still. When he would try to get an ear ring or a button I would say no and blow in his face...he would growl in response !! so funny. He knew my other animals names and he out lived 3 of them and it would be so sad when he would call them (they would come to him) and I knew they would not come. I re-homed him to a bird sanctuary where he is loved and because he is such a calm quacker compared to some, he helps calm the others. They have 3 aviaries-one for their huge birds, one for regular size parrots (Skye and conures and similars) and a small one for the parakeets. They really care. I actually had an opportunity to hold a hummingbird years ago when I lived in MD. I had an acre of open land and yet my hummers would find me. One early May day I was re-filling the feeders and I saw my cat sitting in the garage looking down at a small mound on the garage floor. It was still somewhat cool out and the garage floor was cold. When I went in to look, there was a small young hummingbird lying there ( he didn't have any tail feathers yet) unresponsive. I quickly picked him up very gently-he was truly as light as a feather-and placed him in my palm and took him outside. I took a dropper of the nectar and slid it on his beak and at the same time I made sure I was in the sun. Withing 10 seconds I saw his tongue flicker out, then he lifted his head and drank again. He started to warm up and shook his head, looked at me, then flew off. I swear my heart stood still for a moment. I named him stubby and would often see him at the feeders. Such special moments to hold on to Hope you are staying cool Debbie
  20. Wintersown, I do love the butterflies and bees. I think I will turn my tomato patch into an herb garden...that makes good sense. Next year I will do tomatoes in the ground and can spend the fall preparing. I finally had one decent tomato from my 4 plants.! Between their splitting with over watering (raining) and birds pecking into them it has been sad. I have a neighbor who mows, edges and tidy with a blower afterwards-all for $40-I am very grateful. Hope you are staying cool. Buffrock- OOOOOoooooo blueberries !! I love then-you must live in the North. A neighbor in PA had a horseshoe shaped blueberry garden with a cement bench to sit and enjoy your harvest Well, here is hoping for an early fall!! Debbie
  21. I take clonazepam for my "anxiety" and chest pain that goes with it, along with fast heart rate and some shortness of breath- I take half of 0.25mg and it works fine. This usually comes on when I am just sitting, watching TV, not thinking of anything at all. It is weird but it works so-"there ya go" I have never had anyone explain why it works but hey, I'm just glad I have one diagnosis (NCS)-took long enough just for that....so I have not explored MCAS or EDS yet
  22. If you read the older forum topic and go further and research "depersonalization/derealization you will find it (I found it under the Mayo Clinic) listed under disassociative disorders and similar in nature. I have disassociative episodes from time to time, and less often as I get further away from the events of my youth which caused them. I spent over a dozen years when I was younger (I am 62) working things through and learning to cope. These conditions or symptoms should be discussed with your MD-specialist or PCP (GP) and possibly follow up with a therapist since they can help with coping mechanisms and tricks of the trade to manage it when it occurs--which is VERY helpful....It can be so confusing and scarey to have these feelings and it really helps to talk Hope this helps Debbie
  23. In 2009 I developed chest pain while experiencing a stressful day at work. In the Er my heart rate sitting in the stretcher was 42 and the alarms were going off and I felt fine.And all the tests were negative. And all thr workup was neg too Debbie
  24. Well my idea to get up at 7:30am to do some yard work is no longer a good plan....even though the night temps are in the mid 70's there is moderate humidity that persists making it feel much hotter. Luckily except for deep watering every 3 days IF there is no rain, there is little else to do. It is a bit better in late evening if there is a breeze. But its not yet August.!! We have had 97-98 degrees days for days in a row for weeks now. And the humidity is not at its peak yet. In August we get 80-90% humidity compared to 50-60% now. Yikes!! This saturday we have a reprieve of 84 degrees and so I have a day or 2 to put in my micro-irrigation system that waters each plant individually (not the entire area) so no weeds to pull. So then, my summer will be even less heat stressed Debbie
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