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Birdlady

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Everything posted by Birdlady

  1. low vitamin D low B12 low homocysteine low potassium (not on florinef) high reverse T3 Abnormal TTTs (even while on saline IV, florinef and DDAVP) high NE upright positive ANA (1:320) speckled high CH50 complement high anti-histone abs inflammation markers are low I used to have low cortisol and high ACTH, but that is all healed now. Thank you Lord! I'm sure there is LOTS more. This is just what I could remember off the top of my head!
  2. Thanks everyone for chiming in here! I'm on my 13th year of POTS, so I definitely know the ever changing POTS. haha! It seems like things are progressing rapidly for me. I woke up with some vision loss in my left eye one morning and it's never returned, then add on the left sided weakness, pain and tremors and it really got me wondering. I definitely do not get flush or the itchy, blotchy skin. That's interesting a lot of you seem to have that component! The reason why I cannot get hot showers is because my HR will be 170 afterward and it feels like my heart is going to pound out of my chest cavity. The shortness of breath is unbearable with a HR that high, so I have to lie down and cool off. I'm not looking forward to Spring and then Summer. I don't have air conditioning.
  3. I agree with you. I don't' like to scare newbies on here, so I don't post on those threads. However outside of a miracle, I think things will only get worse for a lot of us. I have definitely gotten worse over the years. Yes my heat intolerance feels like a cross between of Parkinson's and Alzheimer's. That's a good way of putting it. I suppose with my recent vision problems, I have started to wonder about MS. But who knows... I guess I just wait and see what happens!
  4. Ok well I'm hoping this is just "normal" then. I suppose it's just a progression of POTS. I have had severe heat intolerance since I can remember (age 9?), but I never had these types of tremors with it though. I do get the normal jitters/shakey hands when I'm upright too long, but this feels much different. it is actual weakness. I also overheat in normal room temperature, which is so hard to deal with at times. I always say heat intolerance is hands down my worst symptom above everything else I have. I wear tank tops/short sleeved shirts all the time and only wear a spring coat out even when it's really cold. Today it is 44 and my body is having trouble adjusting. It was almost too hot for me. Ha!! We were driving and I had the window down so I could get cool. I took my coat off and still it took a long time until I felt slightly ok.
  5. Hey everyone. I'm not very active on here anymore these days, but I have a question for all of you if you don't mind taking a few minutes. What exactly do you feel or what do you mean when you say "heat intolerant". I'm starting to wonder if I'm showing signs of MS or if this is just another progression of POTS. If anyone knows the difference between heat intolerance in MS and heat intolerance in POTS that would be very helpful too. Lately for me, the left side of my face starts to twitch. My left arm and hand begins to shake almost uncontrollably . I have to hold my hand, so people don't see it. My left leg doesn't want to work well. Then of course add on rapid heart rate and I feel like a mess. Thanks so much!
  6. This is pretty weird...The other day I thought I was taking 2 phenylephrine cold meds. I have terrible sinus problems. Usually phenylephrine does aggravate my heart a bit, but I was suffering so much I decided to try it any way. Well instead I guess I grabbed an old box of cold medicine with pseudoephrine. lol Oops. An hour after I took it, I said to myself..wow this never made me feel good before like this. I felt amazing!...LOL Well I found out my mistake not soon after that. I was always so afraid to take that stuff because I thought it would make me more tachy, but I have to tell you I felt good. Like normal good. I have no idea why. It lasted a good 2 hours. I used to abuse ephedra pills many many years ago when I was 17-18. Not one of my prouder moments in life, but it never caused me any additional heart issues. Looking back, I think it may have made my POTS better... I'm not recommending anyone try this. I'm just telling you accidental discovery recently. I have not heard of anyone on here taking ephedrine. Not sure it's really a treatment option in POTS.
  7. I was told from age 16 to 25 that it was anxiety and stress from school, college and whatever other excuse sounded good. /sigh No one wanted to do any further digging. Hang in there and keep trying. I have no idea if a TTT is safe during pregnancy, so you may have to wait it out and decide later what to do with the SSRI. The only way I was diagnosed was by cold calling a doctor familiar with POTS and I told him to give me a TTT. I told him I knew without a doubt POTS is what I had. I was right. If it weren't for google I probably never would have been dx'd.
  8. I was having eye problems and went to my retina specialist, but he did not seem to care at all. I think this is why we tend to avoid going to the docs. We are treated really awfully, so why go in and get abused over and over again? About 4 months ago, I woke up with a blind spot above my center vision and went to the docs a week later. The doctor told me he had no idea what was wrong, but instead of running tests, he did nothing at all. Now I can't go back because I no longer have health insurance. So it's frustrating. I am very glad that your doctor did a detailed exam, actually showed some concern and was able to help you. When it comes to my eyes, no matter what I have going on with them, they just do not care. These are the best docs in the area too.
  9. I'm am SOO sorry this happened to you. Sadly many of us can relate and we have our own horror stories. Many years ago before I had any idea what was wrong with me, I went in the ER during the summer. I was having severe heat intolerance symptoms and had heat exhaustion but I didn't know that's what was wrong. They made me wait 8 hours... When I got into the room, they told me I was a druggy looking to get drugs. They did not want to talk to me at all. The doctor came in and said that he has seen this so much recently. People coming to the ER for a fix...I did not once ask them for pain meds or anything at all. I just wanted them to do some blood work to see why I was feeling so sick (I had POTS at that time, but did not realize). I guess I must have looked pretty terrible for them to think I was a druggy. My husband was with me and was well dressed. I had told my husband in the past how poorly doctors treated me, but he never saw it first hand. That visit was eye opening to him. The doctor proceeded to check my arms for track marks and was shocked to not see them. He told me I must be injecting in between my toes to hide them....They did no blood work, other than a pregnancy test (wow) and then sent me on my way. I started crying my eyes out because I felt hopeless. I refuse to even go to that hospital now. Thankfully at this other hospital I have been treated much much better, but I'm smarter about why I go. I only go when it's not POTS related.
  10. Summer is very bad for me. My house is not air conditioned, which compounds the issue. In the winter, I freeze and have goosebumps, but it's better than being in a constant state of heat exhaustion. Although I have found that even in the winter things can be tough. Most places turn their heat up and it's like 75 degrees in some of these buildings. I have to wear tank tops and short sleeved shirts most days when I go out because if I get overheated, I deteriorate rapidly. Last weekend I went to a small Christian gathering at a hotel and it got really hot in there, my HR was 145 and I felt like I was dying. The people there were amazing though, they turned the AC way up and put their coats on so I could get cooled down. Only after getting to the point of having goosebumps and shaking, did I finally feel back to "normal".
  11. Yes I understand what you are describing!! I also get the "staring" thing too. For me that happens when I'm not feeling well and I can't process everything that's going on around me. My brain would just rather focus on one thing than look around and process it all. I especially get this disoriented feeling when I overheat. I am missing some vision in my left eye now. My own eye issues started about 3-4 years ago , but I don't know what changed for all of this to start. None of it has cleared up and it seems to be only getting worse. Blah!
  12. I haven't had any luck at these "top facilities" either. At the place I went to, the nurse who took my history and symptoms, told me I was lying about my symptoms or exaggerating them because I looked normal as I walked back to the exam room... I was not exaggerating my HRs in the least. She insisted over and over again I was wrong. After my TTT that nurse had the nerve to come in and say, "well it makes sense you are so skinny now. You were right about your HRs". /sigh I never again went back. Even if I didn't get the same nurse, most of the visit was a disaster.
  13. I think I've said this before, but heat intolerance is by far the worst thing for me. It sets off all of my symptoms. The other day I got overheated in a room and the entire left side of my body started shaking, I couldn't focus on anything and my heart was 145 sitting.
  14. Cushings is the exact opposite of Addison's, so you have high cortisol levels. There are tests that can be run to check for cushings. Many docs are pretty ill informed when it comes to corticosteroid (pred, HC) and mineralocorticoid (florinef) use though...I took HC and florinef for over 3 years and never had Cushings. The only time I had temporary Cushings was when I was injected with 10mg of Dexamethasone and was orally taking 60mg of pred daily to stop a severe allergic reaction. My glucose was 300! lol Once I stopped taking it and it was out of my system, all was back to normal. http://www.mayoclini...DSECTION=causes If your doc thinks it's just from florinef, then perhaps he should try taking you off of it to see if the swelling goes away....You are on a small dose, so it seems unlikely, but as we all know, sometimes we react to meds in a weird way! haha We don't always follow the rule book! Good luck!
  15. Funny seeing this get bumped up! As of yesterday I am now 3 months cured of Addison's. I got prayer for my body and I no longer need to take HC. Seeing one thing leave has given me a lot of hope that POTS will too! woohoo!
  16. I live a bit north of Pittsburgh, so I'm not sure I will be able to make the drive. I haven't been driving much lately with the winter weather. However I will keep this in mind for sure!! Thanks for posting.
  17. You can try looking straight up at the ceiling while in an elevator and see if it helps. Some elevators are worse than others for sure!! I helped my brother move in and out of his dorm this summer and that elevator was AWFUL. 3 times going up and down and I felt like I had been on a boat all day long!
  18. Yes absolutely my personality has changed. I've had POTS for a long time too. In some ways I don't even know what my personality would have been like without POTS because I don't think there was ever a time I was completely normal. aahhhh!! There was a period where I grieved for what I did not have and for what I had to give up.... I had to let go of a lot of things I used to do. I think it's great that your family understands you. So many are battling significant others, friends and family on a daily basis because they think we are lazy or making up our illness etc. The biggest ways POTS has changed me is that I used to be adventurous, hated routine, loved exercising, working and laying out in the sun. Now I pretty much am the exact opposite. Sometimes I have the issue with noises and lights, but I really don't have that symptom on a daily basis. I really don't know if that's something you can push through or not. But I do tend to push through every single day. My HR will be 170 and I just keep going for as long as I can until the shortness of breath gets too bad. I don't like to compare or tell others to push through though because I don't know what it is like in your body. Only you know what you can push through!! I think it is important to find some peace with yourself. You may want to find people in your area to talk to who understand chronic illness. I haven't found online friends or forums to be particularly helpful to me... No offense to anyone here! It's just not the same as having someone to talk to in person. I don't really connect well with people online as many think my typing sounds "mean". Lots of emotions are inserted into my text that simply is not there. /shrug I'm sorry you are having a bad time!!! Lately I've been reading about healing testimonies and it's really exciting to me. I don't know what you believe in, but that's where all of my energy has been going for the past 5 months. I was already healed of adrenal insufficiency, so I keep continuing on for POTS to leave. Reading and seeing people being healed of incurable illnesses by God is amazing, encouraging and makes me hopeful. Take care. *hugs*
  19. Hey Mytwogirlsrox, I am asking a few questions for a friend whose account isn't approved yet to post on the forum, so bear with me! hah!! She is in a similar situation where her HR increases a lot when she first stands but then levels out. She's not sure if she has POTS either. She wanted to know the following... How high does your HR go before it starts to drop? And how fast does it drop after you stand? Thanks so much! Cheers! PS I'm happy to hear you are doing so well! yay!
  20. Yes this illness has taken a lot away from me. I've been sick my whole life, but it got bad about 12 years ago. I know that docs aren't going to help me anymore. I've been doing the natural and conventional medicine route for over 8 years now. I ran from doc to doc looking for a breakthrough. Looking for a lab test to finally show something. I'm done. I'm not telling others to do this. Just telling you where I am at right now. Within the last few months, I accepted Jesus as my Savior and healer, so that is where I am at. It's gonna be amazing when the biggest curse in my life will become the biggest blessing and miracle! <3
  21. Congrats! You are beautiful and I LOVE your dress. It's very understated and elegant. Hopefully you will bounce back sooner than you think!
  22. Leydengs, What you are describing sounds like tinea versicolor. It is a fungus and mighty persistent too. I get it on my chest and back of the neck, but even after using nizoral shampoo, it never fully goes away. It can be itchy, but not usually. Depending upon your skin tone it can either make your skin pigment lighter or darker. Mine is darker than my skin tone because I'm so pale and can't go out in the sun because of my heat intolerance. I actually have a really bad flare up at the moment. Probably the worst ever!
  23. i hate bananas, Did you just make a post about another type of rash? Or maybe I'm confusing you for someone else. You might want to look into chilblains. What you describe sounds very simliar to what I got when I went on BB's a few years ago. They can hurt and itch at the same time and feel better when cold. Hot water or warm temperatures makes them very painful. There is nothing you can do about chilblains. They have to run their course, but it's good to rule out any other underlying issues that might be causing them. When I had them, it was all from the BB's.
  24. Naomi, You might want to read this website. High calcium is never normal. http://www.parathyroid.com/
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