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Everything posted by Joann

  1. I ended up in the ER after taking Lexapro and also when they had me try Celexa. My bp went through the roof. Both times I was incredibly ill, After reading up on it I believe I had a seretonin reaction that is listed on it as being rare but a possiblity. Each of us is diffrent. I will say I have been diagnosed as having hyper pots, and another (larger) undiagnosed problem that may make this an issue others would not have.
  2. Yes, When I am feeling really bad, I burp awful. I also will have lots of gas. It doesn't matter if I have eaten or not. I will have it happen as soon as I get up in the morning and it can happen even after drinking a little bit of water.
  3. When I first got sick with all of this, I dropped a ton of weight because I was unable to eat, because i felt so bad. My doctor tried to tell me that my only problems I had were gerd and anxiety. Once i got so thin, that other doctors noticed aand I mentioned it to her I was unable to eat, she then tried to say my problems stemmed from a eating disorder!. I got another doctor and after getting extremely worse, I was put on some blood pressure medications and slowly regained weight. I will say I got somewhat healthier when I regained my weight but it did not cure my "Pots" or other problems. I even attempted and was able to add about 8 lbs heavier than I ever was. This did not help my symptoms either. Now my jeans are just tight and I am trying to get back to my pre-pots weight. I think my blood pressure medications slow my metabolism and I am unable to exercise so this is becoming a challenge. But when it all began I was very healthy and active.
  4. I agree with Looneymom about the sun and the pet therapy. Anytime I go outside, even when I have to force myself out there helps my mood and seriously who can resist a pet. A dog or cat may make you smile and laugh but if not that it will at least snuggle with you and make you feel loved.
  5. Not sure what she is able to do physically at this time. You said she is getting professional help and that is good. A good counselor/therapist can help. Just having someone to talk to can help, especially someone who is not judging. Is she able to sit up or go anywhere? I ask because just getting your mind off it can help. Having friends over to watch a movie, or if she is able to go to a movie? Something that she can still do, a craft? An example I went to my daughters softball games this past weekend. Now I wasn't able to drive there, or carry any of the things or even set up my own chair. But I was able to watch her games and talk to the other people and it felt great. The people around me have no idea how incredibly debilatated I am, (some probably think I am lazy and let me husband do everything) but just being around other people made me feel so good. Yes, sometimes I would get upset about the things I wasn't able to do there (at one point I got really upset because it was an indoor tournament and we thought for a moment our only viewing of her field was upstairs which would mean I would not be able to see it since I cannot go up more than two steps but they were wrong). The point is find something she is still able to do. It ***** and we are stuck with it 24/7 if it is the only thing you are thinking about it will drive you crazy. It doesn't mean you are giving up and not fighting this but you are giving yourself a break from that.
  6. Well, it took a day of many phone calls to pharmacy and my doctors office but I finally got another bottle of the generic type I have taken in the past. As usual something that should have been easy was not. My doctor's office dropped the ball and did not call it in prior to closing, even though I called to check 1/2 hour prior to closing. I was told that I needed to give them time and that they would deal with it after closing time. They actually said" we wouldn't leave you hanging" and then did!!! I can laugh now, because I had one refill left at the old pharmacy and I was able to transfer it to the new pharmacy. But I could have been without the medication for the entire weekend thanks to them!! Within 6 hours of taking the old bp med, my bp went down. I am still dealing with some issues but not sure if that is because of this or my other problems. Still at least my bp is not as high as that 24 hour period! I think brands do matter, especially for those who have really sensitive systems. I know people who can miss their bp medicines and are fine for a day, but I am late by a couple of hours I notice it!
  7. How was Mayo for your hyper pots? Did they get you on a treatment plan that has helped.? I have high NE also, Dr. Karabin (Dr. Grubb) diagnosed me with hyper pots. I had a relapse and have been able to work or do much of anything for nine months now.
  8. I actually will be glad if that is the problem because I can at least get back on (I hope!) the other brand and start to feel better. I was worried about this happening and everyone told me I worry to much. My family will say that I caused it by thinking it, but really I wasn't even thinking about it yesterday, I had a doctor appt. on a non blood pressure issue so my mind was on that issue.
  9. June I would check with your doctor to see how to safely cut down on the medications. You have to decrease some medications very carefully. If she is like me I am extremely sensitive to any little change.
  10. I picked up my prescriptions earlier this week and when it came time to refill my weekly bottles I discovered my doxazosin was totally different! The pharmacist assured me that it was totally the same just another company they changed to because of cost. Yesterday I took the new pill. Later that night I began to not feel so great, but I decided not to be a worry wart and go to bed. This morning I woke up sweaty, head and back throbbing. Got up and my bp which has been pretty controlled lately (around 110/75 pulse around 80's) was now 156/100 and pulse was 110! I have two of my old pills left, so I took one of them today. I am hoping to begin feeling better as the hours past. I am waiting for pharmacies to open up to see if there is one around that will carry the brand I have been taking. Has this happened to anyone else. I know the fillers are different, but I really think the medicine dispensed differently and didn't last as long, no matter that it was suppose to be the same dosage.
  11. I have hyperadgenergic pots. I tried thigh highs per my doctor at the time and had to take them off pretty quick. My bp goes up and when I put them on I began to sweat and my body began to get so tight. Sure enough my bp sky rocketed. It took quite a while for it to go down after I took them off. My one leg game me problems for several days afterwards. That doctor at the time wanted me to try them again and keep them on longer even with my problems. Even with insurance they cost over $100.00 and I am not going to order them to feel that way. At the time they knew I had a form of pots but weren't sure if I had hyper, low flow or? I have since been told that these help those with pots but that hyper pots people do not react the same as pots people. I think they help those with low flow, low blood volume. For me the problem is probably the fact that my body over reacts to changes and pushing the blood up caused my body to totally over react and push my bp up further.
  12. I am so happy for you and your son. I hope this is the road of recovery for him. I get B12 shots once a month, I started once a week. And even though I still have many problems, I will say my energy level is really improved and I feel like it makes me feel better. If I am late for mine I feel fatigued and I think have more electrical zaps than without. Wishing you and your son the best and Happy Holidays.
  13. I have blue cross/blue shield also. I have been fighting for a year for them to pay for my tilt table test. They denied it because they said it was not medically needed since I don't faint. I am hyper pots so I don't faint instead get hypertension crisis symptoms. Of course u can't talk personally to the board just customer assistants. My doc wrote a letter and said to call if they needed to talk to her, but they denied without calling. I think they hope people give up and just pay it, well I am not! Oh and the test showed that I am a crazy mess, so how can that not prove it was needed!
  14. Had an ultrasound of abdomen and a ct scan of abdomen and pelvic this past summer. It was suggested a hida scan to double check, but I am not having too much problems with eating it is more with movement. The tech of the ultrasound did say my gallbladder was extremely small but maybe just because I am a small boned person.
  15. Katybug, I was typing a response to Medicgirl when you sent your reply. Thanks for the suggestion I will look into that doctor. Honestly, I am willing to go about anywhere to get some answers. I have had xrays in the past so I don't think it is the rib, plus it feels like it is below and under this area. For a long time I thought it was a pheo or something wrong with a blood vessel but so far that is not showing.
  16. MedicGirl, thanks for the suggestion. I have a primary but she is based out of a small hospital and has told me she doesn't really know what to do. She has agreed with my travel for POTS doctors and said she will help locally with their suggestions. I keep hoping I will find a new primary close by that is willing to search more. I am thinking maybe a younger new doctor may find this as a challenge. That or a natural/homeopath doctor, just not having much luck finding that doctor. But I am happy my current primary at least acknowledges I have physical problems. Thanks again
  17. Hi. I am having a problem that I am told is not from my hyper POTS, but none of the doctors seem to know what it is or what type of doctor might help. I actually think this is causing some of my hyper pots. I am having intense pain below my right rib about 4 or 5 fingers down from the sternum, it prevents me from bending, lifting anything or even driving, doing stairs, even being a passenger in a bumpy ride. Anything that causes compression or pressure or movement in this area. It is not just the intense pain it also brings extreme pressure to this area and into sternum and the surrounding abdomen area, it can then cause pain in the mid back and moves up to left side of neck, and my bp then goes crazy high and I sweat. For a long time afterwards, sometimes for days, I will have this and my pots symptoms. When it occurs it actually builds as time goes by. I have had ultra sounds and cts of the abdomen and pelvic area in the past 2 years. Recently I had ultrasound of kidneys and renal arteries something has shown up and they are re-doing this test (I am waiting on results) but I was told that they wouldn't cause the current problems. I have had MRI of my thoracic back and neck ordered from a internal medicine doctor, he said there were some problems but shouldn't cause my symptoms. They have checked for pheo tumor also. I have seen gastro's, urologist, pots doc, primary. Does anyone have any suggestions. I know there is something wrong in my torso. I know it is more than just a muscular or spine problem. Maybe the spine is hitting some nerves and vascular vessels? So who would look into this? Is there some type of doctor that looks at not just orthopedic part of spine but the entire torso, the nerves blood vessels and spine? It also seems to cause gastro problems after it occurs. There are so many specialists out there and each one I see suggests another type, I am bouncing back and forth and as you all know each specialist takes forever to see. In the meantime, it is getting worse and I am unable to do most things.It is difficult to get normal people to understand how bad it is because as long as I don't forget and do something to cause it, I am able to stand and walk and talk to people. Since they see me walking outside (to keep my from becoming totally inactive which will make the pots so much worse) they think it is not a problem. Sorry this is so long, I just don't know who to go to. Thanks
  18. It just stinks the way we have to wait and wait for help. I have recently discovered I have hydronephrosis (swelling of my right kidney) and mild to moderate stenosis of left renal artery. My new pots doctor had ordered the test to rule things out (I found out I also have hyper pots) and told me to take the tests to a urologist who now wants to re-do the tests. Why? I even brought a ct scan of my abdomen and pelvis area that another doctor ordered about 5 months ago and the doctor said her computer is slow and she can't read it. Really? and still insists it would not be causing my current problems. My current problem being I still cannot bend at all, lift anything or even drive along with the pain I get huge bp spikes that occur before and after the pain so it is not just from the pain, in fact today it is even hurting when I get up and walk! If it isn't causing my current problems I really don't want to worry about some new problem until I solve my debilitating issue. Why would I have to re-do a specialized utlra sound that was done less than 2 months ago! The time, money and discomfort that it causes seem ridiculous. I don't even know what kind of doctor to go to anymore, and the sitting and waiting while you get worse is just terrible. I hope you get your surgery soon. Sorry for the rant, but our health care system just stinks. Each specialist just shuffles you out to another and no one wants to look at the "whole" problem.
  19. Sarah, I used to go to chiropractor before this all started. I had a bad neck and scoliosis so I would go a couple times a week. Sometimes I have wondered if this contributed to my problems, a few months prior I suffered a pulled nerve in my left arm from my neck adjustment (it happened right after an adjustment). . After I got really bad a neurologist told me to never let anyone adjust my neck again because it is too dangerous with my issues. She did say if I choose to have my back adjusted to just be careful. Since it hadn't helped me in the beginning of all this stuff, I have chosen to stop it. I loved going prior to all this it really helped my back and neck pain. I think it all depends on the person and the doctor. good luck just be careful with the neck area there are so many blood vessels and nerves in there.
  20. Rich, I had the QSART test and it came out fine, so I might need to ask for a biopsy instead. Sorry don't want to take over someone else's post but I am sure others are interested in this too. I thought the QSART was the big test, so I wasn't aware of this biopsy test.
  21. Lynnie, so sorry you are a having a tough time. I don't have a inspirational story, but if misery loves company I am there for you!. I am also trying to find a cause and course of treatment. Just recently went to a POTS specialist who now wants me to see her boss, because although she sees thousands of POTS patients my case has her stumped. In fact, she is now questioning if I even have hyper POTS, and instead have a vascular/structural problem! It has been two years, I got a tiny bit better but then 6 months everything went bad again. I am told that the current doctor I am seeing is a great doctor and that they will not give up. So I guess we just have to hang in here and keep bugging the doctors until they help us. The good thing is we have this site to come to.
  22. It really sounds like you need someone in your corner.Someone you can talk to. Honestly, I am seeing a therapist when I am physically able to get there and just having someone to even cry and complain to is a help.Also after I am able to get out some of my fears and frustrations, we then try to think of some things I can do that make a difference in my life. For instance, I listed the next 4 or 5 things I need to do in my medical search for answers and we gave me a time line to do them. For me this helps hold me accountable. Because when I get really bad, I also avoid things, like today, I need to get my papers ready for my appt for next week and I am on this site instead LOL. But I have given my self a timer when I must work on it for a set amount of time. Usually once I start, then I want to continue, it is just starting it! It also sounds like the environment you are in is not good for you. What is keeping you there?
  23. I totally understand how awful it feels to not be able to do what you want and to feel like their is no hope. I battle this too. Like Melanie I was super active and athletic just two years ago and now I cannot do much of anything. But I do think we have to never say never. Have hope that you will be able to fly again. I am not a normally optimistic nor pessimistic person, I would say I am a realist. One would have never thought we would be where we are today, we have to keep even a sliver of hope, that just as easily we could get better. I am hyper pots also, along with some other issues I am trying to get help with. Someone said something to me that has made a huge difference. Think about that person you love the most (for me it is my little girl), now think if that person was battling what you are battling. Would you accept the care that you are receiving for them? For me it was no. I would have been calling and knocking down doors for her. That person said that is how you have to fight for yourself. You fight for yourself and for all of the loved ones who need you. If my daughter was sick I wouldn't care if I made the doctors mad for arguing or calling non stop, so now I have to try and do this for myself. My insurance restarts next week and I have to try and do this. Also, my undergrad was in psychology and sociology. And I have to say that I don't think you have had very good therapists. Yes, they could agree with you that you have every right to be depressed but they shouldn't leave it at that. They should be helping you find a way to work thru it. I have seen a therapist and she agreed my problems are because of my physical problems and my reactions are normal for what I am having to deal with. But... then she said I am here to help you deal with this and just having someone to talk to can help at least a little. I know everyone says don't focus on what you can't do but on what you can do and honestly I am not especially good at this. Because really most of the things I want to do I can't. But if I think about what I can't do constantly I do find that it is worse. For me I try to spend some time not thinking about it and I know that is hard when you are feeling miserable and not able to do what you used to do to take you mind off your worries (for me I would run, clean or do errands when I had problems) but sometimes talking to someone about their day, watching a ball game with a friend, or even watching Ellen can at least get your mind/spirit a break. And if there is any way to help another it makes you feel great. And it can be something really simple. Maybe someone needs help creating a document on the computer? I helped someone create a document/chart and they were so happy and I felt great and it took my mind off my problems. Any way, I hope you are feeling a little better. Maybe just knowing that many of us struggle with this too. OH, and my suggestions might not work for you everyone is different, I don't want you to feel I am telling you what to do, just suggestions that I am trying to use.
  24. Like other posters, during flares I look pretty darn awful. Lose more weight, pale, hair loss and hair is just yuck, and people say they can see the pain in my face and eyes. I usually have some dark circles below the eyes. Oh, and my eyes become even more blood shot and the whites of my eyes seem to not look so white. But other times I have begun to look better, when I am feeling better I gain some weight, begin to look better and take an interest in how I look (because during a flare who has the energy or cares about how you look). Had someone ask if I was feeling better because my hair looked so much healthier and my coloring was better "skin was glowing". Of course, then the current flare began and my hair went kaput! But even when I am gong thru a good patch I still don't look like I used to before this. I have always looked young for my age but these last 2 years I have aged a bunch. People who don't know me well, think I look good. Doctors will say you look good and those doctors that know me, think i look great in the summer, but then the one said maybe its because you have gotten so much sun. So my tan makes me look healthy?
  25. I was actually worse later that day after my TTTest. Not sure why, but that night my bp and heart rate went sky high every time I tried to stand. This happened for several days afterwards. The doctors didn't really know why. I have had this happen with other autonomic tests also. I will leave the office okay and within 4 or 5 hours get really ill. I am wondering if it is because for many of these tests we lay flat for a while and at home I never lay down completely.
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