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Raisin

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Everything posted by Raisin

  1. I'm sure you are probably already doing this but my GI doc said at one point that we should be drinking water either along with the fiber or immediately afterward or else the fiber will just "get stuck" and cause more constipation. I wasn't going for about 8 days at a time at one point. But, as some others have said, sometimes the opposite problem happens for me as well. Now, I am having malabsorption issues but my pancreas tests came out fine. So, for me, it seems to be a riddle wrapped in a conundrum. Lol. I wish I could be more help! It is very frustrating.
  2. I don't know if this is helpful Becia but I had a root canal and the doc actually had the chair leaning back so my head was lower than my feet (not enough to slide out. Lol!). Anyway, I got this great relaxed feeling that came over me and in thinking about it later, I think I was finally getting enough blood to my brain! This, therefore, tells me again that I do need to live my life upside down. Well wishes heading your direction!
  3. Yes, that is truly an excellent question! I don't really know the answer either. It seems that for alot of us, each day can be so different from the next re symptoms. I guess I just go by my general trends. If I notice that I am trending downward for awhile, I would be more apt to do a doctor check in. Or, if I am noticing ing something very different from my usual, I may check in as well. But, my appts. seem to be in 3 month increments so I usually wait it out. I also get out of breath alot more, lately, though, and I have been wondering when is the point where you maybe go to the ER for a possible IV fluid infusion? It is a quandary for me also and I hope others answer this post too!
  4. How about....I didn't choose my underwear by the 'This is ER accptable' rule today! WTG!
  5. I think for me what helps the most is what Katybug and Angelloz also mentioned and that is trying trying trying to remain grateful. Good day, I thank God for being able to spend time with a friend or for being able to shovel some snow or being able to get the house clean. Bad day, I make sure to thank God for my cozy blankets and a roof over my head and a memory foam mattress. Lol. When in a storm, we only see the gray clouds and the rain and sleet that is slapping us in our face and stinging our skin, right? But, above the storm is blue sky. To the left and the right of the storm, is blue sky and white clouds. Everyone on this side of Heaven is struggling with something. We are all in this boat together. Sometimes, when the storm is too strong, we need to let the waves guide us instead of trying to steer our ships white knuckled and fighting. Humor has also helped me tremendously. If I am walking funny due to hypo perfusion , I just announce, "oops! Drunk again". I actually fell off my kitchen chair due to balance issues yesterday. I thought that was hilarious. I only fell about 12 inches. I saw a tshirt for Pots that said, "I am not passed out. I am hugging the floor." At times, I just choose humor over crying. It takes the fear away for me. Some times, I do allow myself to feel down. I just try not to set up camp there. If I set up camp and start roasting marshmallows, I am not in a good way. Luckily, a friend of mine told me he ate all the marshmallows. Therefore, there arent any left for me!
  6. So sorry for your feeling poorly Angelloz. I had super forceful beats before and a blacking out type thing which when I look back on it, it seemed more like a Bradycardia. I think GJenson may have something there with a monitor. Atleast then they and you could see what is happening when you are feeling so yucky. My vascular guy said to take my blood pressure when I feel awful but also to take it when I feel good to see if there is a difference there. I don't really have answers but I sure hope you are up and going again real soon. I am assuming that you will be calling the doc who monitors/treats your Dysautonomia. God Bless.
  7. Hi brilliantly crazy! Welcome. Make sure to let us know how your trip to Vanderbilt is going. All the best to you!
  8. I have not tried that jamesdavis1. I just wanted to say hello and I hope you feel better. I have read that the younger you are when you get pots, the better the chance that it will 'go away' in time. Prayers to ya!
  9. Yes Bigskyfam! God love him! Good luck Becia! It is one of those things that just has to be done. (dental stuff). I have Sicca stuff so my teeth are starting to need alot of attention. I also take Xanax and it helps alot. I was actually having work done for 3 hours! I didn't know I could keep my mouth open for three hours. In fact, I was quite amazed. Lol. All in a days work......
  10. Ahhhhhh...yes.....bloating. It can be caused by so many things! I would recommend discussing with your doc. I have endometriosis which can apparently cause this. I have also had air in the lining of my intestines before with this (painful). It can also be from irritable bowel, gluten intolerance, lactose intolerance, lack of proper gut bacteria as well as good ol broccoli. Some really yucky things are female cancers such as ovarian or uterine cancers. Ergo, while it is probably from diet, IMO , I would give it a mention to your doc/docs. No harm in it really, eh? Maybe they can prescribe a great probiotic or something to alleviate the discomfort. With our autonomic nervous systems going awry, it may be something we just have to live with but I hope there might be something out there that might help you! I also despise bloating. And bloating with compression wear on is very uncomfortable indeed!
  11. So I see a new dentist and it was so precious because he said he wanted to know about my illness so he grabbed one of his old med books and he said something about it being caused by tuberculosis. I was like, "what?!" i was unable to speak because my mouth was wide open for repairs obviously. He copied the section for me and I just read it at home. There is a Pott's disease in there and he doesn't know apparently that I have Pots Syndrome. So, 1) I think it's awesome that me dentist took the time to try to look my stuff up. 2) there is a Pott's disease that has nothing to do with Pots Syndrome and 3) if he thought it was caused by tuberculosis than I am surprised he didn't walk into the room with a Hazmat suit on. Lol. Thought you guys might like this story.
  12. Yes, I suppose we all understand the duct tape! Lol. I am wondering some of the same stuff as you are I think. Why can't we "fix" the hypovolemia? What is going on that won't allow it to get back up there and/ or stay there? Now, my blood glucose seems to be having a heyday it seems so I am trying to track that myself to bring to the docs. Sorry to hear you were back at the ER. Did your alarm go off on your monitor from Jaeger or is it a different kind? I had to call in when mine went off. I know it was supposed to beep when hr was over 150. I think it was smart to keep Jaegers monitor on. Nothing wrong with two! Lol. You must have had sticky pads all over you! If you are in a hyperadrenergic state, I would think that it would take the body awhile to feel better even if you were fluid infused. I was thinking of going there the other day when I was breathing as if I have copd. I was wondering if we should use the ER like a gas station where we pull up and get hooked up to an iv. That would be kinda cool actually. Maybe there could be a pots drive up. I always have to keep a sense of humor.......Hang in there. I really do think you will have a good outcome with all these upcoming stuff and you will be feeling sooooo much better. I wouldn't say that if I didn't feel that way. I think it will be a tough time but well worth the effort for you. Prayers. S
  13. Don't worry young one! It's because I am too oldddddd apparently. Why not due to my age? I don't know. He mentioned something about it was because they were in the steroid class? He may be comsidering other factors as well that i am unaware of. He is very smart and his brain is full of info at all times! Pardon my ignorance. I am having alot more trouble with my breathing, though, when upright and hypo perfusion symptoms, etc. so I was going to tell him next time that I don't feel like my blood volume is up to par currently for sure. Of course, that is just a self diagnosis. He also told me last time, though, that Mayo is now recommending 10 grams of salt per day and I don't believe I am achieving that. My blood pooling when they did the test was 40% just upon sitting up and my blood cell mass is too small (whatever that means). I know he and Dr. Browning and everyone else is totally on your case and they are going to fix you up! Maybe I am just an old jalopy with worn parts that can't be replaced.. There is always duct tape for me!
  14. Hi Sarah! My blood volume was down almost 15 % (14.8 something?) as well. Dr. Jaeger didn't say anything to me other than two things. 1) lots o salt and fluids and 2) he said he didn't want to prescribe some of the volume builders because of my age (48). I don't know why my age makes that big of a difference. I was planning on asking him that next time I see him just out of curiosity.
  15. Take hope EMartins. I found that my neurologist at the CC is the one that is more involved in (as others have stated) trying to figure it all out. The autonomic testing helps them steer their own tests regarding the search for a cause. Having both docs involved kinda forms a big picture. They may also suggest other types of docs as well depending on your symptoms. For instance, I have a GI doc helping with my chronic nausea. Take it one step at a time. I wish you well on your journey and keep us posted! This is a great place for information and support.
  16. Thanks Corina! That is my Mastiff puppy Stella. She is a comedienne.
  17. Thanks Corina! Yes, I rested and I do feel better. What is so funny is that I was finally able to figure out how to get my picture on here and that lifted my spirits. Now, I can start my fort attack planning. First I will need the blueprints of all the physician's offices. Then, I shall devise a hot air balloon ride over the exact office where I will drop my questions in a vacuum sealed contraption......the possibilities are endless. Lol.
  18. Hmmm...I replied but it isn't here. Maybe I logged out before it posted. Sorry! katybug...thanks for the advice. It is good to "pre ask" so to speak! And Bellgirl, thanks for making me realize we all do this in some way at some time. We are not alone. And, yes, I would think a Lyme rash would be a good point to bring up! Lol. Maybe you can text a photo of it!
  19. Ps. I don't see this doc until the spring again. Trying to phone with a question is like trying to break into Fort Knox. I'm tired.
  20. Hi everyone. I am really disappointed in myself. My neurologist ordered a transcranial Doppler ultrasound because I have bad leg ataxia when I have been upright (sitting or standing) for awhile. This, of course, was done while I was laying down. There was only 29% stenosis (mild I am assuming) bilaterally in the carotids. It also mentioned I was in the upper limits of blood flow velocity for my age range. I am really angry with myself because I should have asked for the tech to do this while I was at least sitting up. I think he may have seen a whole different picture re the blood flow velocity if I had done that and if i was in the upper limits already, it wouldnt have taken much to throw it into the abnormal range, right? Why didn't I do that? I remember that I just thought I didn't want to be a difficult patient. I feel like a real loser because I didn't have the guts to just ask. Now, I feel like it is just another wasted test showing nothing because I was laying down! I am sitting here crying because I didn't stand up for myself. How can I get the help I need if I don't do things correctly for myself? Help please. Sorry to be a bummer.
  21. Besides meds, there are a few things that have helped me along. Small meals are important, stay away from major sugar and carbs (French fries kill me yet I am known to still get them on occasion with no willpower) . Hard to digest foods can be a problem for me such as lettuce. I wish your cousin well. I also take Promethazine for nausea. Sometimes it helps unless I am too far gone on the nausea scale. But, it also makes me sleepy and seems to calm my central nervous system down.
  22. I am so sorry you are feeling down. I think we can all relate to that! I had to giggle at the naked comment though. I had some severe pain tonight and all I could think of was, " oh no! My hair is a mess! I can't go to the ER like this! It is always good to keep a sense of humor around. I have also had those quit breathing in the middle of the night things. Very scary. I did a sleep test but the doc gave me something to help me sleep and so I slept like a baby the whole night. If you do that test, I would suggest trying not to take anything so they get more of a natural idea of what you are experiencing. Luckily, mine have disappeared. Knock on wood. God bless.
  23. Yeah Naomi. My eyes are in the extreme dry eye category as well. Maybe it is exactly that. I do have an eye appt. in November. I will see what the Opthamologist says. He will probably just look at me with that odd look that we have all seen before. Lol!
  24. Welcome Franziska! I think Katy is right, Especially when looking at medications. But, it seems everyone needs the extra water/fluids and salt (unless hyper pots with the salt) . It is easy to get overwhelmed so just take it a step at a time and make sure to get plenty of rest as well. Welcome aboard!
  25. Well, thanks everyone! I will try alot of blinking to see if the dry eye thing is causing this. It happened yesterday in the late morning so I do t think they were too tired per se. Maybe I should try fish oil also. Worth a shot!
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