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Everything posted by Joann

  1. Well I am in trouble if I am not suppose to drink apple juice and limes. I use lime a lot for flavoring and drink apple juice all the time!
  2. Thanks for your response. Well the doctors at Cleveland want me to get off the alpha blocker, they said this one could cause some hypotension, but I am having blood pressure spikes not drops, so I don't think this is true. Plus, when I got incredibly bad they first put me on metroprol 25 mg and it didn't do anything, in fact I kept getting worse, ended up in the hospital. Granted I was only on it about 5 days when this happened. But then they put me on this alpha (Doxacisn) and then 12.5 mg of the metroprol. I got a little bit better. Now I know the reason for the two at the time, was to treat a possible pheo tumor. Now that they have ruled this out, they want the alpha off. But I remember in the beginning when I took the metroprol, I would feel terrible for hours, but I kept taking it because I was so desperate. This fall they increased the metroprol from 12.5 to 25 mg. I am wondering if increase is too much, when I am either getting healthier or getting worse. I have gained weight and strength back, but when this happened I had come back from the testing at Cleveland, so that probably screwed up my system. I just don't know how to even try to get off the metroprol, at the time when I was only taking it one time a day, a doctor suggested I switch it from night to morning. Well at 4 a.m. I woke up sweating and bp and heart rate were super high, so I took it right away. I also can tell if I am even over an hour late for the dose, so how in the heck do I reduce the dosage? I am only taking 1/2 a tablet at a time, how do you split it smaller? Maybe i really need it ,but maybe it's just the rebound of it. So my next dose of metroprol is due in an hour. I have been feeling a little bit better this last hour. So we will see what happens when I take the next dose? I guess I will find out soon.
  3. Robert - My odd presentations. Well, I guess I am looking more like hyper pots. But I am having so many problems with my left side. Except for blood pressure and pressure/tightness below the sternum, all of my symptoms are on left side. Left side of face, on the left side of the spine on my head, neck and middle back. Left arm, sometimes (and currently) left sided pain either right below rib or right above hip, and sometimes left leg around knee. I am usual as that my problems are worse in morning, but hot showers usually make me feel better. Bending, stairs, exertion of any kind, sometime just certain positions make it worse. I do not get out of breath when I do stairs, but the above symptoms happen sometimes it will start immediately, sometimes an hour or so later. But bp goes up and I start sweating and get all the pain and tightness mentioned. The stairs cause extreme symptoms that can last weeks or end up in ER. I felt like I was learning my triggers but this recent one I can't figure out. It seems like my blood pressure is more of a problem than my heart rate. My heart rate will jump and it did on the tilt table, but even on that they said it was irregular. One doctor felt it indicated POTS another thought it indicated something was wrong but wasn't quite sure what, just that it was irregular. I guess because it was going up and down, but mostly up. I am beginning to think that the bp meds that I am on may not be working so well and may be causing some of the problems now. Now I had these problems before going on them, but now it seems like the symptoms are occurring worse an hour or so after I take one of them and lasting forl any where for 4 to 6 hours. Of course, the doctors want me to stay on that one and stop the one I think is helping me! Unless I am bed bound, I usually feel a little better if I am able to walk a little bit, I know for others laying down helps, but I don't do that often because it usually will make it so much worse when I have to get up. Some doctors felt that my main problem was my neck, and I do agree there is something going on there, but I don't think that could cause all the bp and digestion issues also. They are doing an MRI and MRA soon, to see if there any blood vessels messed up in there. I sometimes think there is something wrong that they are missing and that maybe they need to do angiogram. I am on a waiting list for Dr. Grubb's assistant but there is over a 8 month wait. Sorry this is so rambling, I am really feeling awful since the Cleveland visit, last week I ended up in ER for the first time in a year and today is just as bad, plus I am dealing with a crying teenager who thinks her life is over and my illness is adding to her terrible life! Lol.
  4. Since this is all happening at once, I thought I would ask all the questions in one post. So I went to Cleveland Clinic almost two weeks ago. I was on my meds and actually doing pretty good. If you have ever been there you know there is a lot of walking. I had no problem with the walking, I was carrying my heavy medical records and I was eating pretty good. Well, day two there was all testing, so no eating or much drinking. It was a 3-4 hour trip home. On the way home I didn't think much about it but I started burping. I took my evening dose of metroprol on the way home and then at home unpacked and ate. About 1 hour home I started to feel awful. Head pressure, problem getting up and bending at all. Blood pressure was a little bit funky (mine goes up). So the flare has continued. Off and on where I can't even drive to pick up my daughter at school some days. I now have times I cannot eat, which I know is causing some of the problems, I am having burning below sternum. The usual head pressure, and the back of left side of neck and head pain. Now its also in the back , in the middle near bra area (about where sternum pain is in the front). I go to work one day a week. It was my last day of the semester, so I went last Monday, even though I wasn't feeling especially good. I had gotten up and made my daughters lunch, but later when I was getting ready for work I started feeling worse. Anyways had to leave work early (not good when you have been told they may need to replace me if I can't work more). Had to call doctor. they sent me for the first time in a year to ER. I was having high bp, all the above pain, along with sweating while shivering, diahrea, and electric feelings in jaw and throat. I checked out okay, no heart attack. So I have been trying to take it easy since then. I have been having flares, but nothing like this in months. I am scared it will continue and I will end up like I was last year at this time. But one thing I am noticing is that when I take the metroprol(I take it in am and pm), instead of feeling better, I seem to feel worse about an hour or more after taking it. Maybe it is just coincidence, but I am wondering if anyone else has seen this. Obviously, its not the cause, but could it be making it worse. I do take an alpha blocker in am also, which the doctors are suggesting I get off of. I think I need to get up the metroprol, but I also know that will be very difficult. I am still not any closer to a definite diagnosis. Today, I am feeling bad again. I am having burning below sternum and on left side of rib, and in the back. My head feels heavy, when I stand up I feel like throwing up. If I continue to stand the nausea seems to subside. I am having pain on the below left rib off an on. I am not even feeling good sitting. I can walk, but not any other type of movement. I am getting scared and I know that doesn't help either. I am trying to push through this, I am scheduled for an MRA and MRI of my head and neck, and a heart monitor is suppose to arrive at the house soon. But I really don't know what else to do. How do you guys deal with the fear? How do you deal with the symptoms? And what kind of problems do you have with beta blockers? Sorry this is so long, I had thought about posting earlier in the week, but was trying to work through it. I don't feel any of my doctors get this at all. Oh one thing I am late at getting is my B12 shot, could this be causing all of this? I have some doctors say it looks like POTS but other say I don't present like most POTS. So, I worry this is not POTS (of course, I worry it is too), but something else
  5. Ramakentesh, could you explain your last comment a little bit. What do you mean by increased peripheral resistance but reduced thoratc stomach vasoconstriciton?
  6. Alex, I agree with you, I would consider myself better, if I could live a normal life even if it was on life long medication. I also agree with someone else on the post, I think finding the cause of it would help us get cured. Too many doctors just want to try and cover the symptoms and not look further.
  7. Good luck to you and your daughter, Bebe. I would make sure you mentioned something before the end of the appointment but can understand waiting to see what the doctor says first.
  8. I am so sorry to hear that robert, and I totally understand. I am struggling right now with some odd flare and new unusual symptoms and have no doctor to really discuss this with. My primary has stated she does not know what to do. The specialists I am seeing at Cleveland, have not yet found anything, and doctors do not seem to agree with each other. All say I am not a usual presentation, lucky me. I hope you find some help soon and that the rest of us do too.
  9. It was discovered that I was deficient in vitamin d and vitamin b12. I have been getting vitamin b12 shots for about 6 months. I am not sure if they have helped or not, but they haven't hurt me. For me I think I became deficient because I was having trouble eating/digesting anything, then they prescribed ppi's, which also can make it difficult for your body to absorb vitamins. So malnutrition and not being able to absorb vitamins probably caused my deficient. I am sure that made my symptoms worse, but weren't the cause. But once I was able to eat more normally again and gain weight and fixed the deficiency, i did become stronger and felt better in between flares. I am sure getting enough vitamins into your body will help you feel better, but not sure if it will help your POTS.
  10. I wasn't sure how to vote. I voted about the same. But it has been a roller coaster ride. I was awful, then I was given some medications, and through a lot of fighting got somewhat better, then had crashes off and on, but in between the crashes I slowly rebuilt strength and was able to eat. I was recently thinking I was getting better, and knew what things I was unable to do. and was able to avoid crashes. Hah! Went for further testing about 2 weeks ago and that very night crashed. I have gotten progressively worse since then and unsure what in the testing caused it. Worse non of the testing is giving me answers . Spent Monday night in ER (first time in a year) on the advice of my cardiologist's office. I had to go, to rule out a heart attack, which I guess I am glad it wasn't. Sorry for the rant, just so dang frustrated
  11. I voted that I figured this out. But really, it was a combination. I spent about nine months, with doctors telling me I had a disease, anxiety, that I needed to treat that and I would be better, then they added I had a eating disorder. Even though, I told them I couldn't eat anything because I was so sick. I was told, GERD, anxiety and eating disorder. But, I got so bad I ended up being admitted for 4 days to a hospital, only because one cardiologist listened to me. I told them it changed from lying, sitting and standing. She actually took my bp this way for hours and then admitted me. The most validating thing was when she told me, "No, anxiety could not cause this. The FBI/CIA would want you if you could make your body do this" But she also, said it was beyond her realm. So got me on some bp meds and started the tests for pheo and sent me to an endocrinologist. Told me I would continue to have flares until this was figured out. I had made an appointment with a psychiatrist during this time, because another docter felt it was anxiety, and like another poster on here, I thought if that was what was causing it, then fine, just fix me. On the second visit to him, I told him about the hospital stay and he told me you have dysautonomia and he wrote it down and said give this to your doctor. Oh and you don't need to see me anymore. Those two doctors helped me on my way. The bad part is I still don't really have a doctor that treats me. I have met one cardiologist that did the ttt, and felt it indicated some form of POTS. But she also seems to only know what to do if you are a low bp POTS, and I am have high bp. I have just recently come back from Cleveland Clinic, but so far, nothing, I am not presenting like typical POTS. So I am just struggling every day. My CC tests seemed to trigger something and I am in a middle of flare that is worse than any in almost a year. I wouldn't mind so much, if they had provided answers I am just hopeful that CC doctors will continue to search with me.
  12. I too struggle with the high blood pressure surges. I have been classified as having some type of POTS or orthostatic intolerance by a tilt table test, but really feel my bp issues are more of a problem than the heart rate. When my surges come, I don't really get light headed, but I do get some odd feelings in my head it is not dizziness, nor headache, but it definitely lets me know I need to stop standing. When my symptoms are at my worse I always have high bp, but there are times when I have normal bp and I have terrible symptoms. So I guess, what I am saying that I think we all can have a variety of symptoms regardless of high or low or normal bp. I have often told people if I just had high blood pressure and didn't feel like I was dying I would be totally fine with it. It is the symptoms that come with the bp changes that are so debilitating.
  13. Dani, I feel for you. That is an age where they are on the go and don't understand that you can't keep up. As for the other stuff, I think many of us have problems keeping up. I can no longer do many of the things I did with my daughter, and I hate it. She is twelve, so she can do some stuff for herself, but this is the time I looked forward to being able to do so much with her and now we can't. Some times I have to watch her go with others and I am happy she is able to experience these things, but sad they are not with me. One of her friend's mom is buying concert tickets to an outdoor concert for Keith Urban. She has never been to a concert, I thought that would be anexperience we would have together, but I can't climb any stairs so the concert is out for me. She is so excited and I am happy for her but depressed for myself, plus its hard to trust another adult to take care of my baby. I know this is a safer type of concert, but I want her right by the side of the momma. As for the day to day stuff, I just try and do what I can. I have to keep hope that it will get better, if I didn't have that hope I don't know how I could go on. I think you have to just do what you can and try too not get to down. As for take out food, maybe you can get some easy to make ideas for food. When you do have good days, maybe makes some stuff and freeze it for those bad days? I admit my dinners aren't as great as before, but I have a staple list of go to menus for good days and bad. And there are some healthier frozen dinners out there now that are pretty cheap, my husband actually eats them for lunch at his work. Hope your flare stops soon, (I am in the middle of one myself). I think that is why I am posting so much. LOL
  14. Wow, I can't believe he did that. Well, I guess it shouldn't surprise me. I didn't know they could even do that. I wonder if you could report him to some board? It does sound like you are better off without him, but I also know its frustrating trying to find someone to help. I left my primary doctor of 11 years when she would not do anything but continue to tell me I just had anxiety and gerd, even though there was overwhelming evidence there was more going on. I currently have a doctor who has stated that she doesn't know what else to do with me. I know I need a new doctor but like you don't know who. Since I am currently going to Cleveland Clinic, I am going to wait until I have some info from them and then search out a new primary, I am going to ask them if they know of any suggestions for doctors near me. Maybe one of your out of area specialists could help you find someone nearby. I do like the idea of emailing doctors and seeing who responds. Katybug, wow five years to find a good doctor, well I am at 19 months, so I guess there is still hope.
  15. I have digestive issues when I am having a flare of POTS symptoms. This past week I had a flare, and with it I had nausea, couldn't eat anything without acid reflux and getting sick, plus horrible burping and gas (tmi, sorry). It all seems to be related. When I begin to feel better, I am able to eat more, my appetite comes back,, the nausea and gas and burping go away. When I began to feel better I ate more and gained my weight back and I was able to add some because I have always been to thin, also. I figured it would help pad me for the next flare. I do have some foods that do trigger some digestive issues that I avoid - caffeine (except for chocolate), greasy food (bacon and sausage are no-nos), carbonated beverages and I have been avoiding lunch meats and foods with nitrates, also heavily salted food because I have high bp surges.
  16. Racer, if the medications are working then its worth taking them. If they aren't making a difference than I would get off them. Probably the best way is to add one at a time and give it some time. If it makes a difference keep taking it, if not get off it and try something else. I have been given so many things, even before they knew what was wrong.
  17. Well I called his office for the preliminary test, like he told me to and I was told the nurse would call me back within 48 hours. Since this is Thursday, I figure there is a good chance I won't hear from them until Monday. If he is out of town, like someone suggested than I wonder if they will be tell me anything, until he is back. I get so impatient, especially during a flare. I am sick of the people around me asking me how can the doctors not know what is wrong with you for so long. Ugh. They way it is said you can tell they think you are plain crazy, even when they have seen me in the middle of one of these episodes. Plus I could kick myself for not being more forceful. He mentioned a 30 day monitor and this neck test and also two other tests. He said he was going to see if they could squeeze in some them that day, but when I asked about it at the scheduling desk after the appointment they said he hadn't given them any orders for them yet. So... I am waiting, I should have had them go back and ask about it. They should have done that without me asking, but as I am sure many of you have found many things don't get done unless you push for them. Now I am going to have to wait, and I really would like an actual diagnosis before I hit the 2 year mark! Yes I am really a whiner today. I will say that its the only place so far that doesn't seem to be fazed by all of the strange symptoms. Oh and one fun item. When I got my EKG done the tech told me he sees people from all over, he has had kings and queens and celebrities. One of his first days on the job, he met a celebrity. That is pretty cool. Those people have connections and money and they are going here, so I find that encouraging.
  18. Since they don't know exactly what is wrong with me, and I have high bp surges instead of low, he couldn't offer me much to do while waiting. He did say, I should try and drink more gatorade/powerade than water. I had been drinking equal amounts or more water, before. I try to avoid sugar substitutes, but I may need to start drinking zeros, cuz that much sugar can't be good. I had a bad experience to the compression stockings, so I guess I just have to wait for more answers to have more solutions. Oh, I am on two bp meds too. They were talking about maybe stopping one and I don't want to do that until we have more results, because I feel that they have helped me a bunch. I guess, my fear is the doctors saying they can't help me and don't know what is wrong with me. I don't mind making the trip, if they can figure this out. Both doctors I saw this time, did say that if these tests don't show anything they do want a special test for my neck. Its not an mri, I've had that. I think its called an mra, it could look at the arteries in the back of the neck. They said it was rare, but since I do have problems there and used to get my neck manually adjusted when this started, their is a slight possibility of some damage to them. I think having this knowledge and now feeling so bad , especiallly in neck, chest and head, after doing that blowing test, is freaking me out a little. They told me to wait until later in the week, but I so want to call today. I am trying to wait until tomorrow to call. I will probably be calling first thing in morning. LOL
  19. Krissy, wondering if you had your appointment yet? and how it went? I saw Dr. Jaeger last Friday. He spoke with me for about an hour. Then I went on for testing. He really seemed to be listening and didn't make me feel like I was crazy. He said I should call the office later this week to get preliminary results. Reading Trice125's response has me a little worried. I am hoping he gets back with me and follows through, he said we would do the scheduled tests and then probably do some more later to check for a couple other things. I really felt hopeful after talking to him and another doctor (Dr. Browning, she is part of National Council/Grand Consult). I had another doctor from another university make me hopeful on the first visit and on the second appointment I was so disappointed. So I am hoping for a much better outcome with Cleveland. I think one of the tests may have caused a flare for me. I am wondering if any of you had the test where you have to blow into a tube really hard and keep it at a certain level for a period of time, If you had it, did it cause any problems? My head and neck felt some pressure with this, but not bad, but about 4 hours later when I got home from the trip, I began to feel bad. Every time I got up, or bent over, the top of my head and my neck felt pressure and discomfort and I began to have pressure below my sternum. Plus nausea and burping and gas! I couldn't even go pick up my daughter at her friends house. Since then I am unable to do much of anything I am wondering if it is something in my neck. The doctors I saw did say they would like to have this area further checked (i have had an mri, xrays and ultrasound of caroid (sp? arteries). Anyways, just wondering how your experience went. I am still waiting, just hoping that they continue to be as great as they have started out.
  20. Totally understand your fear. I am afraid of trying new things and afraid of coming off current ones. I have some doctors that want me to stop my current and try something else. I have had bad reactions to new meds and the few times I have been even late on my current, it has not been good. I guess, only we can decide if it is worth the risk. If we think the new medication could reallly help us or not. For me, I am currently waiting on some tests and some more doctors opinions. If we can figure out what I actually have wrong, then I will be more confident on trying other medications. I wish you the best, I totally understand the fact that when you have felt sooo bad, you never want to do anything to make it happen again.
  21. Bebe, I think you should make a list of things you want him to test for. Your doctor is there for you and you know what, if you don't push for it, it will never get done. It would be awful to find out you have something that could have been treated and you suffered all this time, because no one looked at it. And yes, I have some symptoms that fit one thing and others that fit others. I honestly have thought what is wrong with me, is different at different times. I have often wondered if there is something wrong in my neck that is causing all of this, I have thought angina, pheo, hernia, hyper pots and goodness knows what else. Who knows, maybe I have a couple of things wrong. I have often wished I had certain things, just so I would know. And I think I have gotten somewhat better, but only because I am slowly seeing some triggers and patterns. I don't think what is wrong is better, just my avoidance of things. So sometimes I think we may need to take a breather from the search, but I think you have to get back up and keep trying. Especially if you have insurance, if you do, go for the tests. Even if it just eliminates things, it still helps you in your search. I will say this last bunch of tests have kicked my butt and my symptoms are back with a vengenance, kind of scaring me. But, if they help me figure this out, it was worth it. Hopefully, I will no more in the next few days (and hopefully symptoms will subside also). Bebe, you seem very organized, bring a list of symptoms, a brief history of how it began and is currently. A list of doctors and tests you have had and a list of your questions and tests would like to talk about
  22. yes get your copies. I have had the same results on one test interpreted differently by three different doctors. I also had to request my records to take with me to Cleveland and read through some of the doctors notes. There were so many that were wrong. Things that i hadn't said, one said my mom had something that my dad had, one made it sound like I was living with my parents, when I am married and have a child. And many symptoms were just plain wrong. I agree with Katybug, it is like they were talking to an entirely different person! So I would ask for copies and then ask question and do your own research on results. I am sure there are some great doctors out there, but it is your life and I am learning we need to depend on ourselves and not blindly on them.
  23. Bebe, it sounds like your daughter is feeling better? No more feeling like she is going to pass out?
  24. There are natural hair colors available. I have a friend who uses them and says they work just as well as the others. I wish I looked good in grey, I do not. I look old and sallow, and its not just my opinion. I think everyone is different, but I think I will be fighting the grey, as long as I can. I will say when I am feeling extremely bad, I could care less how I look and let it go.
  25. Miqual, My cat. numbers were high also, but not triple. I also had a MIBG scan. The technicians at the test said they were not suppose to tell me anything, but they felt that I would have answers, that they were having spots light up. Then my doctor said it was inconclusive that both of my adrenals were lighting up with uptake. They then did a ct of the areas and said there were not pheos. I have been put on two bp's that are suppose to suppress a pheo, if you have one. I was also given a blood test and they said that means I do not have a pheo, but I have also been told that if you are not in a flare it won't show. They are now talking about taking me off the bp's and seeing what happens, and trying other bp meds, because they feel it is something else. I am totally afraid of going off these meds, because prior to going on them, I could not do anything, I was sweating and pounding and unable to get out of bed. Since then I am not normal, but I have days where I am able to do more. On this site, there are many that thought they had a pheo, but ended up not having one. Some of them ended up being diagnosed with hyper pots. Even though I have been having problems for 19 months, I am still searching for an actual diagnosis. I am getting closer, I think, I am currently going to Cleveland Clinic for many tests. We can't offer medical advice, but I think saying you may want to get a second opinion before having anything removed, if they are not sure, is okay to say. . I have heard that living without adrenal glands can be rough, even with hormonal replacement. But if you have a definite diagnosis then you know you need to have them removed. I am sure some of the more medically knowledgeable will able to tell you more.
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