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Everything posted by Joann

  1. I have never been good at handling cold and always loved the hot weather. Since POTS has come along, i still cannot handle cold, and still enjoy the heat. The only thing I noticed is that the high humidity bothers me a little bit more, but whether this is from POTS or getting older, I am not sure. I have been known to wear sweats and a hoodie when everyone else is complaining about how hot they are. Not sure if this matters, but I have high bp and not bp.( you would think that would make me hotter?)
  2. Hugs to you. Sorry about your experience. I can totally relate, as most here can. I was just talking to another DINET member about how I cried the whole way home from an appointment when told I didn't have a tumor. As to further testing, at the very least it rules things out. At the best, you figure out what is wrong. As long as you have the time, money and perserverance you should keep trying.
  3. High bp. Episodes where I would feel awful pressure and tightness below my sternum. It would then hurt on the back of the neck, side of face, left arm. When it go really bad my head would feel like it was being pumped up with a bicycle pump and explode. My entire body would get tight and sweaty, I would feel sick to my stomach. BP would go crazy high. After episodes I would have to go to the bathroom, be shivery and sometimes body would shake/tremble uncontrollable and be exhausted, kind of like the feeling you have from mono. In between these episodes I was having terrible trouble eating, sleeping, pretty much everything. Ugh...
  4. Hi Bebe, Sorry you are feeling bad. I am sure the water could be curbing your appetite. I know for people trying to lose weight they suggest they drink a glass a water prior to eating, so... I know you are feeling poorly, but one thing that helps my aches and pains and often helps me feel hungry is going for a short walk. This doesn't cure me, or help me with all my other problems (which you know about), but if I walk the block a couple of times, my appetite seems to come back. And maybe this is tmi but helps with any bathroom problems. LOL. I guess getting the circulation moving helps your body in a variety of ways.
  5. I just want to thank you for posting the information you have recently. I am getting closer to the hyper pots diagnosis. And the information you have given is very interestig to me. For me I usually go to the ER and they keep me for a few hours. By lying down and getting saline or just the lying down and bp meds, my bp goes down, of course when I stand up it is bad, but they don't care about that. So they tell me I can go home, some will say we can keep you in observation for the night, but I usually just go home once I know it hasn't turned into an actual heart attack/stroke.
  6. This has been happening to me for close to two years and I still am not used to it. I wish I could say it is just POTs, like some of the posters but, I feel like I am dying/having a heart attack and try to be calm and breath easy but still wonder if one of these times it will be the end! I do not get short of breath, but I get the intense pressure below my sternum that builds and then goes up and into back. The left sided pain in neck/head, sometimes back, shouder and left arm. If it is a really bad episode my head will feel like it is going to explode from the pressure. Oh and another crazy one, intense pain in my leg, the back of it usually it is like a line of pain behind my knee down my calf, the last place to happen will be the upper leg. I get the sweating,nausea and super high bp. For me, it will sometimes go down if I sit or lie down, but I don't do that unless it is really bad, because when I have to try and get up again, it will be even worse. Once I get one of these episodes, any little thing can trigger it for a while. I hope I get some more answers and some type of management of this. A year ago, it was triggered and it sent me to the hospital and for days I couldn't even lift my head with it starting up. In fact, I turned my head on the bed and felt just as bad. Not sure if the medications helped me eventually get over that or it was just time ? Like an idiot I went up three lousy steps yesterday and it triggered one of these episodes. I am still having after effects from it. My leg is killing me, my foot is getting off and on tingling and numbness, and the left side of neck, face, shoulder are sore and throbbing. My bp has gone down, but I am taking it really easy. In fact, sometimes after one of these episodes my bp actually goes lower than normal! I have had many heart tests and my heart is strong, but I often wonder if there is some vascular issue, but have been told they don't think so. I also have wondered if a tumor is being compressed, but doctors are leaning towards hyper pots. So reading these posts, and hoping my episodes will become more controllable and I will also be able to just think or say " it is just my POTS". For right now, in my mind I am usually going " Stay calm, think calm, but OMG I am DYING!!! Why can't anyone stop this."' LOL obviously, I really need to work on this.
  7. thanks for the encouragement. Well, if I can get my health under some type of control I think I need to try this. I am losing my job because of my health and maybe I can try to use this to make some money and make me feel like I am doing something that is contributing to my family and life. Sigh But right now, I feel too upset to really write, my health has been so much worse and as many of you experience no doctor really seems to be able to help. I have been told they feel I will soon be diagnosed with hyper pots, but they also think there is something else going on but again they can't figure it out. It really stinks. I have been trying to maintain what little health I have, and then yesterday I did something I shouldn't have and it really set me back. I am hoping it is just temporary, but afraid it will make things go on a further back slide. I went up and then down 3 darn steps, I can't figure out if it was the steepness of them or what? But I honestly felt like I was having a heart attack. I do two into my house and it is usually fine but the neighbor has three and stupid me I went up them. Now my one leg is aching so bad and my head is still hurting a day later, Oh and even doing my little steps now feels icky. I was able to walk my block for hours this weekend at our block party, selling 50/50 tickets and just chatting with everyone. But three steps make me feel like I am dying!!
  8. Trice, Like you I have been to the C Clinic and had similar reaction to it. One good thing that happened there was a lot of testing was done, even if for me it yielded no results, I at least have those tests checked off. My primary does not know what to do, but she is willing to follow a treatment plan, if I ever get a firm diagnosis and treatment plan! LOL. I actually had an appt with her today just to check at what has been happening. She does give me suggestions and she gave me her opinion on suggested medication and I guess I use her as a sounding board. I also brought an old test up that was worded odd and she told me it showed I had kidney stones! I never had them before, so she is sending me to a specialist because of this. Ugh. Like you traveling is difficult and expensive, but if there is a specialist out there that can help me, than it is worth it. I do have to stop sometimes because of money and travel. And to be honest, I took a break the last few breaks from calling doctors, even though I am doing pretty bad right now. I just couldn't handle anymore doctors, I figured I have been bad for this long, a week or two won't make a difference. I guess you have to decide what works for you. I know I have to find someone to help me or I am not going to be able to function and that is unacceptable. My hope is to find that person no matter how far away and hopefully they will work with me and a doctor that is close by.
  9. Sarah and Janet, thanks for the info. I will let you know what I end up taking and how it works The thing is right now, like many of us, I have something else going on, my symptoms that are the worst may not even be pots related and i really want to concentrate on them and not add more possible problems with medication switching. This will sound so odd, but I cannot bend AT ALL without awful results, I also cannot lift almost anything with same results. I have had ultra sounds of abdomen and mri of middle and upper back, and while it shows some issues they say nothing that should be causing this. I went three weeks with avoiding doing pretty much anything and I felt ok, pots not very bad, of course, you cannot really live much of a life having everyone else do everything. This week I tried sitting and bending over to get some stuff off the floor and it is back to being extremely bad. Even sitting in certain positions will not trigger it. And it is not just pain, but all of the lovely bp issues and gi issues and ugh.. The "It" of course, is unknown. I know if the doctors figure this out, it will resolve a lot of my hyper pots symptoms too, as they usually happen at this time. But so far no one can figure it out! I had this happen last year before my current medications, back then I didn't see the triggers as clearly so I was much much worse, but yet now the triggers are more intense when they happen. So I am worse when it is triggered but better in between because I think I am avoiding triggering it a little better. I actually had gotten somewhat better and for several months was able to bend but not lift things. Don't know what caused it to get better or what caused it to get worse. But I can't imagine the beta blocker switch helping this. And the thought of dealing with the possible side effects with everything else going on has me freaked. It sounds like Clonodine is the thing that really helps the hyper potsies for reading all of your posts.
  10. I p.m. you with the info I had about CC and Dr. Browning. If you need any more info, please pm back.
  11. Kimbellgirl,You are right, the money is relative. Guess I just am questioning if this change will really make much of a difference. They are all beta blockers and I know each is different but wondered if this could really make a big change. I hate trying new things, I know I will never know unless I try , but I it seems like I have bad reactions more than good reactions to things. Sigh.
  12. I saw Beverly Karabin at Dr. Grubbs office this past week. She is pretty sure I have hyper pots, and some other issue going on and I will have two more tests to determine this for sure. I am currently on metroprol along with a alpha blocker. She would like me to switch to another beta blocker. And eventually switch my alpha to clonodine. I know we can't give each other medical advice. But can people with hyper pots tell me their experience on bystolic or labetalol? She mentioned bystolic first and said this is the newer one and has the least amount of side effects, but that it is expensive, she said if it was too expensive she would probably suggest labetalol. Well even with insurance bystolic is expensive, my husband said if it will help just do it. But if they are all about the same why not save 40 or 50 dollars a month on one subscription. and get the cheaper one. To be honest I am totally freaked about switching any of my meds, but know I have to try things. Could hyper potsies here share there experience with these medications. Thanks so much
  13. Yes understand what you are saying. I don't even know how many doctors I have seen in the last year and half. Some of those doctors I have been referred to and some I shopped around and yes, I am still searching for a doctor or team of doctors that will really be able to help. I have seen many nice doctors that have told me that they know something is wrong, but that is not in their realm. And I have met some awful doctors who just don't care. It is so frustrating and ping pong ball is a good way to describe it.
  14. Alex,I had the same reaction to Lexapro and Celexa. I am hyper pots and am afraid to try anymore anti depressants. Each time I had terrible symptoms and ended up in ER.
  15. Hanice, Thanks, I have thought about it, just don't know if I have the discipline. I love stories and books, I am a librarian (just to messed up to work right now).
  16. Corina, You mentioned the pressure, that is my problem. I am afraid to go in the water, because I felt awful when I did. My whole body got that intense pressure feeling like I was being compressed and my bp went up so high. (I have high bp problems, not low). I had the same reaction when I tried compression stockings. How do you get over those feelings and get in the water?
  17. I could pm you about my experience, but mine was similar to trice125.
  18. I wish I knew of a place that would do upright MRI's or CT's or ultra sounds. Everywhere in my area insists they can only be done laying down.
  19. I totally lucked out, which doesn't happen to me often! I was told it wouldn't be until October or later and I got a call Friday that they had some openings in August! They said they just go through the list and if you don't answer they keep calling, I am thinking many people are away for the summer, lucky for me I am feeling too ill to be out and about having fun. LOL. I will ask about this. I think my friend said it had something to do with our hyper sensitivity or our over reactive system reacting to this compression and over shooting with our blood pressure and heart rate (does the overshoot cause to release more NE or ? I still have issues understanding the NE and POTS). But again, not really sure. I just know I don't really want to try them again.
  20. I tried to wear compression stockings once. I immediately began to feel bad. I stood up and my bp went up to 150/100, I think my heart rate was around 125. This was while on two blood pressure medications! I took them off and it calmed down some. My bp went down to 130/90 in the next hour or so, but it took a while for my bp to come back down to my "new" normal and I felt bad for quite awhile. It will sound crazy but my legs felt ok at the time this happened. Instead it was my upper body that felt the rush of tightness/pressure (chest, head upper arms,back, neck) but the next day and for several days after wards my legs (especiallly my left knee) hurt. I have been told by my cardiologist to try them again, and by another doctor to try them. But they never say why. I have had the test for low blood volume and my test came back almost normal, just tiny tiny bit low. So why compression. I also have high bp, now low. One of my friends who sees Dr. Grubb, said he told her that hyper pots do not need compression stockings, and it may make things worse for them. It is so frustrating! I went to CC and was given the suggestions for compression stockings, increase salt and increase fluid. When I asked about the stockings and the salt increase while I seem to be hyper, I never get an answer. I am waiting to see Dr. Grubb's Beverly and hoping they can explain all of this to me.
  21. I actually asked if I could be partially propped up for the mri and was told no. To do an accurate check of my back i had to lie flat. then she let me a have a little thin pad for the top of my head, which did nothing. I have to wait til Wednesday to see the doctor who ordered the test, I tried seeing his partner and she was the rudest person I EVER met. I won't go into the whole story, but basically won't review tape because I am not her patient and said the radiologists report doesn't indicate anything that would cause this (although it does say I have several bulging discs in the thoracic spine, but not herniated). I cannot bend or carrying anything. I tried sweeping and it brings pain in my upper abdomen and then pressure and sweating and in to my back. I don't think my problem is exactly like yours,, but then who knows some of my symptoms are similar. I don't know of anywhere nearby who will do these tests upright.
  22. Sorry, I don't have any advice. I have had the opposite problem with losing too much weight.
  23. I was actually going to start a new discussion when I saw this link. I am currently on doxazosin and metroprol. One doctor wants me to switch doxazosin to clonodine. I am so afraid of medicine changes, has anyone had experience with these. I tried to research the differences, but I am having a little trouble with the difference between alpha 1 and alpha 2. Could someone explain this. I have episodes of high blood pressure, actually this is more trouble than the high heart rate. I have to admit I still am afraid they have missed a pheo tumor which is why they put me on the current meds I am on. Any info or suggestions would be appreciated.
  24. this may be a little different, but I would feel like my legs had magnets in them and were being drawn down to the ground. They were so heavy to lift. Sometimes my spine would feel like this too.
  25. Wondering if this is part of my problem. I have not been able to bend or lift anything. I get such pain and pressure below my sternum, right rib and in my middle back. The doctors look at me like I am crazy. Today, I couldn't even lift a half gallon of juice without this happening and of course, my blood pressure shoots up super high when this happens. Maybe it is from tight muscles? I have been afraid it was vascular, or my spine. So far no one can tell me. The gastro is the only doctor that seems to be interested in finding answers.
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