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Relax86

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Everything posted by Relax86

  1. No lesions from Brain MRI/CT scan. Also MRI of pituitary - all normal
  2. Mine was the same...I don't have numbers off hand but low level positive for scleraderma. Repeat ANA at a later date was normal but positive for low C3 complement testing. My crappy rheumy gave me slip to retest this July. Monitor for changes. I'm actually feeling better and she also said if I was truly positive the testing would not linger back and forth but would be progressive. Good luck all
  3. THis is one of my only remaining consistent symptoms. I don't think it's a bad thing. I'm functioning at 95% (the last month or so). I was thinking it was the last symptom to correct itself before I make full recovery (wishful thinking).... as my blood vessels re-learn their job of properly timing vasoconstriction/dilation.
  4. I am generally a cold person now but not specific to extremities. Prior to POTs I would easily sweat. For several months during the course of 2012 I stopped sweating all together. I can sweat now but it's just weird, not my norm. My temp usually runs low. I was taking it for a while as instructed to chart adrenal function. I wasn't great at taking as specifically as the body temp test required but I did note I always ran low. Truth be told I never charted my body temp, so maybe it's my norm but I always feel uncomfortably cold now and that's new since this flare
  5. I have/had the same thing. Also can feel what seems like blood bubbling in my neck when I lay down. I put the head of my bed up 4 inches and it helps. I also take my time lying down...I start sitting up in bed, then I semi lay on some pillows then I slide down slowly over time...letting my blood vessels decide if they are going to dilate or constrict when they're supposed to. I breath in thru my nose and take long active exhales - not sure why I do this. Sometimes right sidelying makes it worse so I stay on my left or propped on a few pillows. Being on my belly with hands over head seems to calm my tachycardia but I don't know why and that doesnt even make sense to me because in standing - hands over head makes me OI. I don't think our blood vessels know what to do in dysautonomia - lay down slowly and try not to confuse them...hehe. I think the body can be retrained. It's scary though, and I also have low supine/lying BP. I pushed the worry aside and that helps. I chose to believe that nothing bad was going to happen to me, I just felt bad but will always wake up in the morning.
  6. I wish I could definitively answer exactly how I got better. But it seemed like hydrocortisone, salt, water, and Coconut water worked in the beginning. I wasn't seeing the boost of BP I needed to function so I added Midrodine for a short while. I went back to work before I felt well enough but I credit getting out of bed for recovery because it seemed like the more I stayed down the less my body could function up. I added no weight exercises in sitting. I usually felt worse after exercise but kept trying anyway. This flare came in Jan 2012, Started seeing some better days around April, weaned from HC and flared again in May...back on HC and got better by June. Over the summer was able to add more days of exercise and some light weight training. Added meditations, stayed on the forum for sanity and tried to make positive thoughts part of recovery. Today it seems like I have very different symptoms than a year ago. I'm not POTs but still have dysautonomia symptoms. My flares seem to be diet related. I didn't have food allergies prior to this thing but I do now. My body is very different today as compared to pre Jan 2012. It's just about wrapping my head around that, not living for my pending next flare. Correct any iron, Vit D deficiency, hydrate and listen to your body and the smart people on this forum. The more bloodwork I got to find answers the sicker I became. So I really consider testing very carefully. Good luck.
  7. I'm always right sided ear pain, neck pain, R hand is cold and R sided hand vessels pop way more than left. As for vision it's my left eye that's lost the most as noted during my last 2 eye exams. I noticed that also in the thread. I'm a Right sided amputee so I don't have R lower extremity symptoms beings there's no right lower extremity...hehe
  8. You never quit...good for you Puppy. A year makes a big difference in the life of a POTs flare....very nice to read.
  9. In my first bout of POTs I was prescribed both of those drugs. I recovered fairly quickly from round 1 (which was in 2009) WITHOUT using the drugs. At that time finding out that I was pretty anemic and VIT D deficient, and fixing those things seemed to get me better. The flare of 2012 I was diagnosed with low BP and I chose to only take the Midrodine. Once my BP came up then my HR mostly seemed to come down. I felt better, and my body seemed to re-train itself over time. It is worth to mention that I was on/off Hydrocortisone for most of 2012 as well. I used HC because I was dx with adrenal fatigue which is a controversial theory. My symptoms fit quite a bit of the criteria and I don't think I could have gotten better without using hydrocortisone. So my point which I seemed to get away from is that once the Midrodine raised my BP my tachy episodes improved.
  10. Postural stressors, and being sedentary can predispose people to back pain ~ especially mid back pain. Unless I misread the post it would be hard for me to believe you could palpate 3 pinched nerves or suspect pinch nerves based on what sounds like trigger point pain. Getting xrays of the right part of his spine would be a good start. Good luck.
  11. I got better Dave. I feel most of my days I'm now at 85-90% me. I've even had a few where POTs/dysautonomia feels like it's behind me. Today for instance instead of feeling occasional moments of normalcy I had occasional moments of POTS. I can't pinpoint exactly how I got better but if I go back in my posts here on the forum I can see the slow transition. It took over a year. I'm happy with my progress, have to embrace it and try not to worry about the next time. I recommend finding forum folks whose symptoms mirror yours and gently stalk them....lol. I read tons of research and did some trial and error. I tried to really listen to my body, which seemed to be misfiring and seemed very foreign to me. I knew I was in there somewhere. Keep the faith. Good luck.
  12. If I had to guess some POTs pts might be more prone to tendonitis due to being a little more sedentary and deconditioned. So when you do try and move a little or move the wrong way, or repetitively the soft tissue is not as prepared as a typical healthy person. Tendonitis happens to everyone and for lots of reasons....but if I'm thinking of POTS and tendonitis - this would be my guess
  13. I nutribullet all the way: Kale, kiwi, coconut water, kashi good friends cereal and strawberry kefir and chia seeds. The recipe doesn't seem to affect my POTS and as for the nutribullet - best invention ever. So easy. If I ever get better I'm mixing coffee, ice cream and vodka.
  14. So sorry for your loss and your sickness. The forum helps in many ways. There are people who can identify with portions of your story. Sometimes that's how the healing begins
  15. Tonight I'll stop thinking I'm an amputee and maybe tomorrow I'll wake up with 2 legs again. Trying to push myself - hehe. I'm a way better amputee than I am dysautonomia patient. Honestly, how can you not constantly think about symptoms of POTs - it's every day, all day. It is nice to see new potential findings.
  16. Thanks all. I bought it but haven't tried it yet. I stopped taking advil last Thursday in preparation for trialling excedrin. I bought it but I'm afraid. Also I've been feeling decent. Accidentally found out that night time work outs - literally the last thing I do before I get in bed - correlates with elevated BP's for me. Usually - if my morning BP is 90/60 or better my day is very tolerable. That being said, I might try the excedrin if I get a migraine or for menstrual cramps during my next cycle. I am afraid of tachycardia. It's the symptom I tolerate the least. I usually get tachy if my BP is low. I won't get tachy with 2 cups of coffee so I'm hoping that I tolerate the excedrin and gain some vasoconstriction as well. We shall see.
  17. I rarely get sick, catch colds and can't remember ever having the flu. Pre or post pots. But I do know that when I mentally fall apart - with a sobbing cry (silly, I know) I actually have no POTS symptoms for several hours. Also, recently been playing around with a short 15 minute weight training session just prior to bed which has made my AM PB's jump up to 111/63 vs 99/50. If we're talking about symptoms that temporarily disappear. As for my autoimmunity I had to fire my rheumy - shopping for new.
  18. Anyone ever use this med regularly to treat symptoms?? I have ear pain, lower BP (way worse in the am), and lowered immunity. I weaned from hydrocortisone which really worked for me, and replaced with 2 advil in the am and 2 in the pm. Just for an anti-inflam help. My menstrual cycles are bad but last one was dangerous. I was wondering if the advil was thinning my blood. I did use Midrodine successfully for a while but seemed like my BP can some days normalize in the afternoon and then even a little midrodine would be too much. My veins in my hands won't seem to behave and when they light up I also have OI. I'm looking for anti inflam, vasoconstrictor, pain reliever. Kinda watching the thread of people trialling sudafed but I'm easily tachy and afraid. Anyone have success or find this didn't work?
  19. I say let the Doc enjoy his life of ignorance...the chances of opening that persons eyes are slim and it makes us feel crappy to have to defend our dysautonomia. Some Docs want to grow...this doc sounds like he/she just wants to be right. Also, does Wellbutrin put weight on people? I have interest in trialling something new for my current symptoms but I don't have the option of weight gain.
  20. Brilliant. I think these Doc's can't imagine the tiny things that trigger us. And might not believe that they do. If I didn't know any better and I listed to myself I might just dismiss me as anxiety.
  21. There could be tons of POTs people who are not overachievers/Type A's, however those of us who are POTS and are overachievers hit the forum to look for answers. I think it's the type A's that show up to the forum rather than the type A's that actually get POTs... At the end of the day being type A didn't really do me any favors.
  22. Good feeling, I'm sure; great news!!!
  23. I had my follow up with the Rhuemy and she disappointed me. Said my + ANA was something to watch (I'm fine with that), said my lowered immune system was also something to watch and could mean nothing (I was sort of wondering what are the "somethings" it could mean). Lastly she asked me what provokes my symptoms currently. And I said lying flat seems to be one thing. So she watched me lie flat, watched the veins bulge out of both my hands (usually is mostly right, this day veins seemed to perform for the Doc) and my PB dropped, HR ramped. She got scared and sent me out the door. She said dysautonomia's are really tough, she'll keep an eye on me to see if I'm any of her diseases (???) and go from there. She wants me to see her hubby (electro cardiologist) who helps some POTs people with those issues. I am actually cardiac cleared and I said as much. "Thanks for thinking of me for your husband. I"m sure he's great for the people who have POTS for those reasons, I'm kinda not that girl... also thanks for flaring me with that scary look on your face. Here's my $10 copay. See ya again - never" I might give up on Doc's for a while or try a rhuemy that has more guts. Can't tell what I want from day to day. I'm meditating for now. So the short answer to your question is I don't yet have an answer.
  24. I might be making a return to midrodine. The veins in my hands have been pretty consistently pumped up, blue and burning. As the blood flows down into my digits it's not in my brain making me light headed and feeling like my head is gonna pop. I've had some pressure in the one foot I do have (Im an amputee). Haven't really checked my BP lately. I might track it a little for the next 2-3 days and if it's low - I'm jumping back on the Midro band wagon. I had good luck with it before in raising my BP which in turn lowered my HR. Also, when I read about people using abdominal binders I almost can't breathe thinking about it. I have such a terrible tolerance to just having my arms crossed and resting on my belly in standing. Any abdominal pressure - even the wrong jeans makes my HR increase almost immediately. So I feel like I need peripheral help. Why?? I have no clue.
  25. One thing that I did that seemed to help me a lot - is I stopped having blood work. It's not a recommendation but something I did after deciding that so many blood tests were just not positive enough. A certain percentage of my symptoms went away once I gave my body a chance to regen some RBC's (took over 2 months). I made the decision after having so many blood tests "near normal"and no real findings from hospital stay. I was anemic and had low hemoglobin which I understand is iron storage. I also had a test that showed possibly low blood volume. At that point I felt that my RBC's were either being destroyed too soon or not regenerating quickly enough. I'm female with heavy menstrual issues. In my case reducing the bloodwork and managing my iron stores, levels and blood volume was helpful. Good luck to you. Lots of info here. Take care...hope to see some recovery for you soon.
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