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Everything posted by Joann

  1. I would try calling again and getting another person to talk to. I think that scheduling tests is difficult but it can be done. When I went to CC, I had one day with a bunch of tests set up. But it took the scheduler a long time to get them scheduled for the same day and that also meant I had to schedule out a bit. At one point I said I was willing to come back for the one test, because I didn't want to wait any longer than what date they were at. The scheduler then managed to squeeze in the final test. I had the consultation prior to the tests on the same morning. But, I did have to make several calls to get it all straightened out. For me, the follow up info and care was more difficult to get. Tests were done, but I don't feel that it has helped me at all.
  2. Question, you have problems standing. Did you have problems with bending or lifting? Along with the spot below my right rib, I am having terrible pain/pressure below sternum and in my mid back (both in the middle and a line to the left of spine) when it is extremely bad, it goes up my left side of face/head. This is getting worse, until I can no longer even carry a gatorade without pain. Last year this is how my POTS symptoms began. I can tell I am very close to being at my worst.It will get to the point I will no longer be able to even sit or stand. I know it is something in my torso causing this. Could it be the kidney? I had been thinking of other things, like my back, hernia, pheo. I feel like it should be something they should be able to find easy, but the doctors keep shaking there heads. Tomorrow I am going to get my thoracic mri results, I am so hoping it will show something. The nurses have told me they didn't think there was much there but a bulging disc. But maybe that along with my scoliosis is causing it? I just know it is something that compresses something to cause the POTS and all this pain and pressure
  3. I like you get scared I will die. I know that I have something else going on along with or causing the POTS. Until I figure out what, I will be afraid these episodes could eventually kill me. Maia has given me hope that continually searching for the cause can give me the answers I need to get better. I honestly believe that an underlying problem is causing the POTS symptoms along with my other symptoms that other doctors just want to shrug off and say they don't know. I am currently looking into my thoracic back and another cardio test.
  4. That is so great. Can't wait to hear more.
  5. Blue, I am right there with you. My first 44 years of life, i never sat down. And yet now, I suddenly can't do much of anything and they all think I am lazy or crazy. Like we would want to be like this? They forget all the years we were doing everything for them and others. My husband actually seems to be getting it, but he still has trouble realizing that if I am not able to do things, he need to. I too feel guilty I can't do the stuff I used to and want to. My 12 year old was sad this week, because I can't take her or do much of anything with her right now. At first, she had the usual selfish mentality of kids, that I was ruining her summer, but later she apologized. I hate that not only is this crap messing up my life but my loved ones also! I wish I had the positive thoughts for you, but I just wanted to say I am with you. Hopefully, things will change for the good for all of us.
  6. So glad for you, it sounds like you are going to have an answer and a solution! This gives me hope that I will get there some day also.
  7. I too have this upper right abdomen pain, but mine is not usually triggered by eating. It is by movement, bending, lifting, squatting, But I do think there is some GI component because after it is triggered I have really bad gas. It is really intense pain and pressure that once triggered, seems to trigger very bad pots and bp surges.
  8. Can't wait to hear what they say. It would be great if you get answers really soon. And really unbelieveable, it seems like so many times it is a hurry up and wait game. Oh and you asked if I have had my kidneys checked,I did have one doctor say I should have the renal checked, but so far no doctor has. I will look into a urologist. I did see a kidney doctor about a year ago and he said "we could do a lot of expensive tests, but I don't think we need to right now. Continue seeing your endocrinologist, even though I don't think you have a pheo either."
  9. It is so frustrating. So many doctors refuse to think out of the box. But it sounds like you are going to get this taken care of. I am so happy for you! I have a similar issue. I am pretty sure my problems are steming from something that is 3 to 4 fingers below the sternum and also a little below the right rib. I give them exact location and yet they say there is nothing wrong here. This has been going on for over a year and a half. It has gotten more and more pronounced and I know this is the cause of most if not all of my problems. Just hope they find before I am on the autopsy table as one doctor joked recently.
  10. I have been told I have mild POTS and that many of my symptoms most be from something else, but so far no one knows what that "else" is. I am currently unable to do much of anything, except in a total opposite to most POTSies walk. Walking seems to be the only thing I am good at. Can't bend, lift, kneel, squat, do stairs, drive, etc.. I am able to sit, walk and prop up to sleep. I am glad I can do those three things, but things seem to be progressing and am able to do less and less activities. Because medication is somewhat controlling my bp while I sit and walk, they think its ok.
  11. I posted earlier in the year and just wanted to update, I can now do very little chores. Only things at counter level or sitting level where I don't have to bend or lift anything even a little heavy. Sigh. Husband has said to not do anything until we can get into the doctors to see if there is more going on POTS.
  12. Just shy of 5'7".I have always been thin. I used to weigh between 115-120. If I got under 112, I would become ill. When this hit me, I dropped to 100. Took over a year but I got myself up to 124, I thought having a little extra would help, if I got sick again. I guess that was a good thing, because I am having problems again and my weight is dropping, last time I checked I was around 116. I have had the ER experience that others have had, where anorexia is thrown around.
  13. Lemons2lemonade - I understand those times when it seems like it is too much Before this I never realized what pain and issues someone could live with. I honestly thought you got ill and you went for help and they helped you! You are right climbing a mountain has nothing on us. I often think if I ever get answers and help to return to much of my normal self, I will be able to conquer unbelievable things. We will have our pity parties and our down times, but we have to try and pick our self up. I have to admit I do not and will not embrace those scary times, maybe it is wrong but I fight them. I hope you feel better
  14. Jackie- thanks for the suggestions. As for the pain medication, they cannot give me pain medication because they are not sure what is causing this. It is really odd, I can be totally fine standing and walking, but if I have to lean forward to do something, the pressure is unbelievable and continues to build. If it happens too much I will get pain that stays in area also. Primary is trying to get someone to look at me sooner, I am just trying to make it through the weekend. The problem with the specialist, is I don't even know if this is a gastro problem, could be anything.
  15. Well, I called my insurance 24 hour line and they said call your primary again. I did and I am waiting for her call back. I told the receptionist the specialist can't see me for 2 months and I am getting worse and that the pharmacy filled a prescription I am allergic to. So I will wait for her response. But my primary will do lab work, otherwise she refers you to other people. MomtoGiuliana and Jackie M - honestly in the past two weeks I have often felt like going to ER. The hospitals nearest to me are really small, so I am thinking the next time I go, I will go farther to a larger, research hospital, maybe they will help. I also have to wait to have a ride there. Sad, isn't it, my family wants me to try and wait this out. I don't know what we are waiting for, a miracle or for it to get bad enough to be taken seriously? Thanks for suggestions
  16. I know I have commented before, but I am currently having some major problems, primary can't figure it out and has told me to see specialists. Of course specialists can' t see me for a couple months. So I am waiting until my symptoms are bad enough to go to er. I know that sounds terrible, but I am getting worse and worse at home and I know it is not going to just get better on its own. I would love to go to ER right now, but I am sure they would release me after running a few things. So when it gets so bad that it may be life threatening I will go. Currently, I cannot bend at all or lift anything or I get intense pressure and pain between my breasts (below the sternum) and under the ribs, it can also go in the back around the same place. The pressure builds and I feel like I will not be able to breathe. Each day, I can do less movement and bring it on. But no one seems to care. I called the Cleveland Clinic doctor that I have seen in the past and feel like I was getting the brush off. Sorry, but I am so disappointed with the medical field. I am just waiting to get worse, to hope to get some help.
  17. For me the problem is getting up from lying flat. When I sit up I get tons of pressure and my blood pressure goes sky high.
  18. Have you lost weight? If you are thin your periods can lessen, plus stress can do many crazy things to your body. My cycle has actually become more regular than ever since I have been battling this. But I am having other odd things, I am a bit older than you both are and I am having grey hair coming in like crazy and hair loss. I have been told this is because of the stress on my body. When ever, am feeling bad, I lose more hair! So anything is possible. Also you may need to check your iron and vitamin levels.
  19. I try to never lie flat either. The few times I have for a test, my bp goes crazy high and have crazy surges for quite a while. I would love to try tilting the bed 6 to 8 inches, but unless you have your own bed how can you expect your partner to have to sleep like that too? Instead I use tons of pillows, and my daughters pillow pets to support me in a half sitting/half laying down position.
  20. Thanks. This is so crazy. I called the doctor and left a message, plus sent an email yesterday and she has not responded. That really makes me mad. The nurse I talked to, who was giving the message to her told me, it was my decision about going to ER. She said if the pain began to continue and not stop or I started to vomit or have bad headaches I should definitely go in. This morning I tried to carefully lean down to get something out of a dresser drawer. I stood up and pain and intense pressure below sternum and ribs. Then pressure rises through upper body and head. I was then left with the pain/tightness/pressure below the sternum and ribs for quite a while.I felt like I wasn't going to be able to breath, and something in there was being squeezed or caught. My bp went up some, but not too bad. Of course, it was such a little movement, one wouldn't think it could cause this. It was the most intense scary feeling. It feels like I am not going to be able to breathe. In the morning when I just drank some warm water, it happened to a lesser extent, the pressure and intense feeling. Then I burped and it became a tiny better. I have a feeling I am going to end up at ER, because each day seems worse and able to do less and less. Just wish someone would help me, without having to be so bad you have to go to ER. If this had happened a year ago I would have gone to ER a long time ago, but I am so used this that I hold off knowing they won't do anything unless you are super bad, and even then probably not much. I feel so alone dealing with this. Oh, my sister in law asked me yesterday, if I thought stress could cause this? A yea, I am anxious so I can't bend? Such support. Thank God for my parents, who live near by, I don't know what I would do without them. My dad came over today to wash my kitchen floor, and vacuum and help me with some things I can't get off the floor. Yet, I was able to walk the block, I guess because there is no movement of the upper body?
  21. Everyone is unique, some find medication helpful, some don't. There are a lot of therapists out there, just because they have a license or degree doesn't mean they are for you. Sometimes you have to go thru a lot of frogs to find a prince. If you can find a therapist that you connect with it, they can really help. Dealing with my illness has caused me anxiety and I have tried many therapists. One therapist told me to eat brown rice and lots of vegetables. Another told me, something happened in my childhood, that made me think I didn't deserve to eat or live! No, I wasn't able to eat, because it hurt and I was ill. But I have found a therapist who I finally feel is listening. Maybe call your insurance company they often have suggestions. Also there are many non medication treatments. It is really tough but you have to do what works for you. In the past I would wear rubber bands on my wrist and snap them to get my mind off things, count backwards by 7 or 9 ( I am really good at it now) and many other things like that to get my mind from staying on a destructive cycle. Remember small steps, can turn into many.
  22. Thanks looney mom. I think the vitamin d went down because I hadn't taken any supplements over the winter, it probably went down, then when this "thing" got re-triggered, I ate very little and it probably really dropped. What is odd about the vitamin d, is I love the sun and even at my worst I was outside in the sun and yet my vitamin d was really low. Tonight I just started re-taking the 50,000 iu pills, once a week. I am hoping I don't have any adverse reactions. Last year, I think I was really achy after taking them and someone told me that meant it was working. I just can't imagine that low vitamin d caused all of this. My primary doctor doesn't think it is my gall bladder but wants me to have a hida scan and see a gastro. She said if I can make the episodes happen, she doubts its gall bladder, hernia would be more likely, although not usual. I will say she is willing to continue to look. She does not want me to have anymore ct's and I agree with her, I don't want to be exposed to more radiation than needed. She is also checking for a carcinoid tumor and wants the other doctor to re-check for pheo. She also said I might need to see a surgeon to see if they could see if it a hernia or some type of tear. I have gone over all the things that happened at the time this started. The day before I think I tried and carried my then 11 year old into the house. I have wondered if I could have damaged the vagas nerve or something in that area? Thanks for your suggestions. The last few days have been especially bad, so I am hoping they figure it out soon.
  23. Julieph85 I understand, I don't feel like I have POTs either. If I do, I know I have something else also. Even for those that have POTS or dysautonomia, that is not an answer, I think we all deserve to find what kind or the cause. I too refuse to be pushed under the rug and told to just try this medicine, when they don't even know what is really wrong with me. I have been told my blood volume is pretty close to normal and yet they want to do things for low blood volume. Why? I have high bp surges and yet they want me to do things that those with low bp would do. Why? When I do question them, I often get no answer. One that really annoyed me was " You have to work with us, we need to rule things out" I listened to them knowing they were wrong, tried going off my current medication and I ended up crashed in bed. So I learned from that, the doctors don't know best always, it is our body and we know what we are feeling. They can suggest we try or do things, but we need to decide if they are right. Right now, I am having intense pain in my upper abdomen, below my sternum and in my back. I cannot drive, or bend or pretty much do anything but sit, or walk and they are trying to tell me I have POTS. POTS would not cause the extreme pain and pressure in these spots. I know there is something wrong in this area and I am determined to find someone to figure this out. Sorry, I am ranting, but today was a tough day and I am so frustrated with not being listened too by so many doctors. The nurses and technicians tell me to keep looking, but most doctors don't seem to care or understand how bad it really is. I was told by a nurse recently that I was too nice and that I also describe it too calmly. Basically she told me, don't worry about them thinking you are crazy, you are your advocate and tell them how really bad it is and insist on being listened too. I will let you know if it works, I just sent a long email to a doctor at CC. Before I would have been afraid that I sounded panicky or crazy, but this time, I described it with symptoms but also how it has exactly limited my life.
  24. I am posting this in chit chat because I don't think this is dysautonomia related. I know we are not doctors, but any suggestions would be great This is a problem I started out with 20 months ago, it is the beginning of all my problems and for a while it had gotten somewhat better and now it is starting to get extremely bad again. No doctor has been able to help me, nor do they seem to care or realize how awful it is. I need suggestions on who I could turn to or if any one has heard of anyone with these symptoms. Triggers bending, squatting, kneeling, leaning to far forward, stairs, lifting legs too high over something, exertion (sex, bike riding, running), driving, sometimes sitting in a bumpy car, after a episode, even sitting a certain way. What seems to not trigger it, walking or laying down. Wait that is not true, It seems if I lay down flat, getting up from that will trigger it. Also cannot lift hardly anything! I do not get the pots symptoms of faintness or out of breath. When it first starts it just feels tight, pressure below the sternum. The first few months I would then get pain in the back of the neck, then would get sweaty and have to burp and run to the bathroom. I discovered my blood pressure would go high then. It got worse and worse.Started having pain also on left side of face, neck and left arm. But long story a little shorter. This spring it began again, at first I didn't realize what was happening, because the pressure and bp rises would happen after the incidents that I didn't realize it. Like after I had gone grocery shopping and put groceries away. Then I would sit down and it would happen. Now it has gotten to the point like last year, maybe a little worse. I cannot bend down to get anything, and all the other above triggers. I get pain and pressure below sternum and also just below the right rib. I actually will have one spot that actually will hurt to touch when it happens. My back around the same area, below bra line near spine will hurt, sometimes all around spine, sometimes to the left of the area. When it gets really bad it can then spread to left side of face, neck etc... When it happens it lasts a long time, even sitting or laying down don't make pain go away completely. It can last for the day or longer and then I am unable to do even more than before. My bp will go extremely high. Oh and it will get like hyper pots then, where sitting and standing the bp will go up a lot, sometimes the heart rate will go up sometimes not. Oh and I get gas and burping after these triggers and often have to pee much more often after this. So I have been careful this week and bp has been nice and low. Anytime I do a tiny movement I stop before it gets too bad. Today, I went to grocery store with my dad, and he did almost everything, I did nothing. We got home and I was just putting some things away, carefully and bam pain and pressure in sternum area, back area and even in side of head. This was 3 hours ago and it still is bothering me and bp isn't too bad. A little higher than normal and my heart rate went really high for me when I tried to walking after this. I do have a small hernia, but the doctors say this isn't it. Although I did read an article about hernias causing problems for years. They are re-checking for pheo. I have had heart tests, but worry that maybe there is a blood vessel being pinched or blocked. Maybe an angiogram would show something. My doctor did say she would review old tests to see if kidney renals had been checked. Could it be something in my spine, a crushed nerve. I cannot imagine that muscles would cause this? I have had ultrasound of gall bladder and liver, aortic area. Could it be something more in hip that refers up to areas? I am able to do less and less. I am trying to not be afraid, but I don't feel like the doctors are really doing anything. I am on two bp meds since this started, and I do have symptoms of hyper pots, but I really think that something else is causing this and if it can figured out my pots will go away or be more manageable. The bp meds were the types to surpress pheo. My doctors want me to go off the one that I started secondly and seemed to keep bp down. I tried to stop it one day and by 2 pm. I was up to 170/100. Now I refuse to go off it. Oh, many blood tests the only ones that are bad once again like last year are low vitamin d and high norepinephrine and tiny high repinphrine. Over the winter i was able to do bending again and some lifting, nothing heavy, so it got a little better before getting bad again. I have no idea what I did that made it better, except I avoided all stairs and I still do that. Sorry this is so long, but I figured people on here have had to deal with many odd things, who better to give ideas. I honestly can sit, stand, walk, lie down and do some things at counter level. Oh, and I am using little 2 lb hand weights to do some arm exercises while walking one lap around my block and one 3lb for stationary lifting. Seems anything else causes these problems. Last year, this triggered what i consider the pots symptoms where I couldn't even sit up. Thanks for your help.
  25. I am sorry you are going thru this. I have some of those same feelings. I am a mom and wife too and have had a resurgence of symptoms these 2 months. I really don't know what to offer you as advice, everyone seems so different. Just wanted you to know that there are some of us that understand and that all we can do is our best. Just love your family and do your best, try not to beat yourself up about what you can't do. That is something I am battling with. I guess we have to live one moment at a time and try not to think too much about the future. About exercise, I don't know. I know for myself, that I have to make sure I do something every day even at my worst, or I seem to lose strenght; but I also know that if I do too much I will pay for it. I am trying to force myself to eat and drink to keep strength and I have found my vitamin d levels have fallen greatly again. So you may want to check your vitamin levels too. I hope things turn around for you too.
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