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Joann

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Everything posted by Joann

  1. Sorry you are going through this. I remember when I posted asking if anyone had gotten better, you had said you were almost all better. I hope it is just a temporary thing. Hope you can get a doctor to see you. Maybe it was the cardio, maybe too much too soon? I am also in a bad time right now, its been almost two months and I am like you I can't figure out what to do. Mine actually seems like it is more than POTS related, but getting doctors to move is so frustrating. Went to CC last week and was told to give her two weeks to review all my old tests. Which means in two weeks she will tell me what we might do next, which will mean waiting while they set up those tests! In the meantime I am trying not to go further downhill, but this has a minds of it's own.
  2. I had seen your cartoon before and loved it. I loved it even more, since I have had to deal with more doctors that are like that. The technicians and nurses are often the ones that encourage to keep trying. I am so sorry you are dealing with all of your symptoms. I don't have the same symptoms as you but have the same problem, I keep getting test after test and no answers. On paper almost everything is perfect. I am the most optimal healthy level for inflammation, automimmune, etc... Yet I cannot function. I did have some months where I was getting better, went for tests close to two months ago and am almost back to square one . What is really odd, is that most of my problems are currently in my sternum and back in that same area. I cannot make almost any movement but walking? It is kind of the opposite of pots really. Although I also have pots symptoms. But I cannot carry anything (not even my purse), I cannot lean over to put my shoes on, or go up stairs and the areas are extreme pain and then all pots symptoms with high bp occur and yet no one can figure it out. To me it would seem something in that area is causing it, but trying to get doctors to look at basic things is taking forever as I get worse and worse. Sorry, I hope your appointment goes well and this is the doctor that helps you. and that you get to go outside and spend some time with your kids. Your first post you mentioned feeling useless. I feel like that also, just try to keep fighting, because your loved ones know you are doing all you can to get better.
  3. Agreeky -- there were two articles, I am trying to find the second one. This one is about hernias and women, but its not the one about hiatal hernias. Still it is interesting, I will try and find the other article. http://www.nytimes.com/2011/05/17/health/17brody.html?_r=1& I am having worse and worse pain with less and less movement, maybe its the hernia or maybe it is something in spine, I don't know but if it gets any worse, I will probably end up in er. I am trying to take it easy, and yet trying to keep moving.
  4. I don't have any answers for you, but wanted to just say. Last year when I was having many symptoms I had the scope and they found gastritis and a small hiatal hernia. I asked if this could be causing some of my problems and was told no. But I just read an article in the New York Times that showed so many of my symptoms caused by a hiatal hernia. It also stated that woman's hernia's can be more difficult to find and even small ones can cause big problems. So now I have to find a doctor to re-look at this. I am currently unable to bend, drive, go up stairs, etc... This article (which I will have to look for the link) also stated that it can cause heart symptoms and stimulate the vagus nerve.
  5. Sorry, I haven't heard of him. I just got back from CC, yesterday. Almost every doctor I have seen there (3 visits so far) has been very kind. I just have yet to get answers. I guess I can look at the fact that many things have been crossed off the list. I have only heard of one negative experience with one neurologist from a friend and it was not the name you mentioned. If you want info about that one, just pm me. I hope you have a great experience. I did see Dr. Jager and he was really nice and felt like he really listened, but after seeing him and having the tests in his department I have not been able to contact him or know what he would like to do next. I guess he is busy and the nurses guard him because of it. I did get a letter with the results, but I feel like it needs to be explained further. I am also seeing a internal medicine doctors, she is part of what is called National Consult. They kind of keep your case together and talk to all the doctors you see. Just frustrating I am really having so bad problems and it is the hurry up and wait. They took more blood (nine vials) and reviewing all my old tests on discs. But I feel like I am struggling to not get worse with no help. Someone on this board did say that CC is a good place to get diagnosis but then you take and get treated elsewhere. Not sure if this is true or not. I will say I am frustrated on some suggestions. I have been told to salt load, even though I have high bp. Also to use the compression socks, even though I told them the one time I tried them my bp skyrocketed (one hyper pots patient told me they do not work for hyper pots). Oh and a nurse put the wrong medication in so they thought I was taking a water pill and I am not! They also want me to go off one medication, even though I told them this is the one which seems to be keeping the bp lower. Sigh... That saying at least they are still testing
  6. 21 months and I am like julieph85. Not even sure I have pots. My symptoms don't really fit, but then some do. Doctors can't seem to agree either. Told I may have pots, hyperpots, orthostatic intolerance, with additional things they can't figure out. Oh and many of the doctors were trying to push me off to rhumie with fibromialygia. Saw the rhumie yesterday and he said I do not fit that at all. Testing for other things but said I still seem to fit the profile for a pheo tumor or something similar to that. Sigh... I began to have episodes that increased in frequency until I became totally incapacitated with this, after a a stay in the hospital I slowly got a little better and was to the point I thought I was getting a handle on it. This past 2 months I crashed several times and am back to pretty non functioning. No doctors can figure this out. Frustrating and scary.
  7. Seattle Chris- I get the same thing you described. The blurry vision and yet you can still see. I get this more in the morning, sometimes right after I get up, sometimes a few hours afterwards. It is usually just one eye, usually the left, but it can happen occasionally the right. My eyes also are always bloodshot, but when I am flaring or this vision thing happens they get extremely red. It doesn't matter if I have gotten enough sleep or not. I have been to the regular eye doctor and they say my vision is fine and they didn't seem to care about the issues as long as I can see their chart. I figure unless it gets worse, I will add it to the list of odd things my body now does.
  8. So glad to hear of someone who has a good relationship with their doctor. I am on the wait list for Dr. Grubb's assistant Beverly. Just a heads up when I last called the wait for Dr. G was a year and his assistant was 8 months. I have been told that Beverly has been his assistant for 20 years and consults with him on all cases. Once you see one of them, you are automatically a patient of his and next appointments are not as difficult to get.
  9. MarkA- I had a tilt table test back in October. I was on my medication, so I am sure the results would have been even more pronounced. My heart rate did go up and my bp actually was going up and down. I was surprised, I thought it would just show my bp going up and then after a while leveling off, but it actually was up and down crazy. I did not have this test at Cleveland and so now the CC doctors think the medication affected the results. The thing is they do not seem to be listening that I had all of these symptoms for months prior to being on mediation. The medications are what lowered the bp enough that for a while I was functioning a little bit better. This past month and a half have been extremely bad. I am no longer driving, yesterday I attempted to have someone take me to grocery store. Loading the groceries from cart to check out triggered a worse flare and I can now no longer bend at all without blood pressure rising and pain in both my upper abdomen and back. I am going back to CC tomorrow to see two doctors, I am hoping one of them will take this seriously! One odd thing, I am able to walk the block fine, but any other type of movement, squatting, bending, lifting, some sitting will trigger episodes. Episodes will then cause me to be unable to function for days.
  10. I am so sorry you are having these problems. I don't know what to tell you, except I have somewhat similar issues right now. I get those high surges and begin to sweat and feel awful and then after get the shivering and shaking. I have yet o find a doctor to help me. I had this a lot last year, was getting somewhat better and now the last month and a half it has been awful again. I am getting these surges and went to ER twice, but now I am trying to wait them out, since they really aren't able to anything about them. When they get that bad, I usually have to lie down and hope it passes. Are you on any bp medications, if so ask your doctor if he may suggest taking sometihing when this occurs. The one thing they have said is it is okay for me to take a 1/2 of additional bp pill when it happens. I don't think it helps a ton, but can at least maybe keep the bp from getting even higher. I am also having them rechecking for pheo, because mine seem to be triggered by certain movements, like bending. Hope you get answers and I hope I get them too. I get very bad pain in my upper abdomen on one side, in my back and in my neck when these occur. Not sure if this happens to you or not?
  11. Looneymom, Thanks so much, I read this on my phone last night and I felt your hug. My phone is old school so, I can read things but not really respond. I feel so bad for you and your son. I have a 12 year old daughter and when I am feeling bad, my very worse fear is that she will get this. I cannot imagine what you are going thru and what your poor son is. I am sure you have been everywhere, but if you haven't make sure you try one of the children's hospitals and the pots specialists. I thinks some of those children's doctors have some great compassion and drive even if its not their speciality. That is what I am looking for myself a doctor that really wants to help me. I feel like so far, I really have not found one doctor that is in my corner. I am giving the doctor who is in charge of my case one more try this Tuesday. If I feel like she is not listening to me. I will be back to square one, lookiing for someone else. I know I may get a bad rap of doctor bouncing, but this is 20 months of my life gone.! My daughter says she doesn't remember me active. (which I think she is exaggerating). So the first ten years of her life, I took her and did everything with her. And I planned to do so much more as she got older. And now, I am lucky if I can go to one of her ball games! Let alone being able to practice with her or even take her to practice. Sorry forgot this is not an email. But I did just start seeing a therapist who deals with chronic illness and pain issues, we are writing a plan/goal of how to deal with pain, illness, fear, goals and dealing with unfeeling people. And yes I do feel my medication may need to be changed. I hope your son starts feeling better soon, and you find someone to help treatment. Thanks for all of your kind words and encouragement.
  12. Dani, I am so like you. Afraid to take anything. I need to start taking vitamin d again, and I have three different kinds here, and I am afraid to take any of them because I am afraid they will give me some reaction, and right now i can't imagine adding another symptom! LOL. Let alone all the talk of switching my bp meds!
  13. Dani, Please let us know how it goes. I actually have been considering it myself. I have a terrible phobia about medicines too. I am afraid to try new ones and afraid to get off the ones I am on, even though I think I do need to be on others. I have the fear for the same reason you do. I am going back into therapy to help me deal with this and and all the other POTS stuff I am having trouble dealing with, but the past therapists I saw really didn't understand this. This time I requested a therapist that understands chronic illness and pain. I wish I hadn't read lieze's comment, I would not have thought there would be effects to this type of therapy. I will try not to think about that! LOL
  14. Bebe, I am like you. Not really understanding how the SSRI's work. But both times I tried them (lexapro and the other one mentioned) I got extremely ill. More of hyper pots. Sweating, super high bp, chest pain, heart racing and yet no energy. I tend to think I have some type of serotonin syndrome reaction that was listed on the flyer as rare. I have had that my reaction listed on my medical papers so no one tries to give me those types again. I am wondering if maybe xanax may help me. In the past I used ativan, but I felt like it was just adding to my overall tired feeling and I didn't really help. Some one mentioned xanax, but to be honest, my anxiety would stop if this terrible "flare" would stop or at least if I knew for sure if what is going on is even POTS related. I am thinking I may have an additional issue. Anyways, interested in the description on how ssri's help some and not others.
  15. Well made it to the ultrasound today. Technician wouldn't say anything, just if there is anything seriously wrong they tell doc right away otherwise 3 to 5 days. So.... She did say I was a great scan because I am so thin and tiny. Also said my gallballer was extremely small. Asked if I had eaten. I said not since last night and she said she asked because normally the gallbladder isn't that small except after you have eaten, but maybe just because I am so small. Otherwise, I bet they will say nothing wrong. My dad took me to grocery store from their. Just pushing cart thru store gave me pain in back and sternum area. He told me it was just being weak. My muscles he said. But wouldn't I be out of breath and the pain is more like pressure and pain, doesn't feel like muscle or bone pain. When I told him I worried it was cardiovascular he said they would have found that by now and maybe I should try a sedative. Oh, was I mad and hurt. I am scared from being in so much pain and mad I am so sick of hearing mean comments.
  16. Dizzysillyak- I do have an ultrasound scheduled for Wed. But they are only looking at gallbladder and liver. I wish they would just look at the whole area. I have been to er, but it was before I had the pain below rib. When this began, it wasn't so obvious. I would just start to feel sick, the whole area seemed to get a pressure sick feeling and then i would feel nausea, hot, and bp and heart rate would increase. It would happen when driving, noticed side street worse (bumps probably), going from sitting to standing and vice versa. Then sitting sometimes would trigger it. With Pots I would have problem with getting up, but this was the opposite and pain is in back and upper ab. So anyways when I did go to ER they checked for heart attack and nothing else. I had someone tell me I should just relax and drink a beer and I would feel better, another told me to get some medical marijuana. So I guess they feel it's all in my head. I wish there was a magic pill or drink that would make me feel better
  17. No sorry, I don't know much games. I just finally broke down and got facebook. .I probably wouldn't have done that if I wasn't so sick. I do play a couple game son there.
  18. Thanks I wish a bunch of us on this site lived near each other. Misery loves company! No really, to have someone who understands what we are going thru and to be able to help each other during our bad times. I know once I find someone who can figure out what is going on I will feel so much better. I mean even if they can't cure it. To know why something is happening and/or know what to do when it happens, what to avoid. That would be such a relief. Right now, I am stumbling in the dark. Never knowing if anything I am doing is actually helping or hurting. I try to think back at what worked last year and I don't really know. The meds must have helped. Maybe the vitamin d and vitamin b12 (maybe not though). The only thing I do know is to continue to drink and try and force myself to eat (I have not done well with this) and keep walking short distances many time a day. And keep hoping someone will help me figure this out. In the beginning my husband didn't really believe I was that bad, then he knew it, but just figured I would get over it. His was of dealing was denial and leaving when possible. Now he has become much more helpful, but still cannot cope with the bad times. I wish I had his positivity, he always tell me that the doctors will figure it out. They just need time. Well I have given them plenty of time! I do have an appointment with Dr.Grubb's office, but that will probably not be until fall.
  19. Snowdrifter- thanks and I may take you up on pm you. Ryan- last year they did do an ultrasound of the area to check the aorta. My father and grandfather both had aortic anueryisms. My dads was caught in time and my grandpa had two the first was fixed, the second he chose to die from, he was in his 80's and refused to go thru another surgery. The surgeries are pretty intense and back then even more so. So anyways, even though these are more often in males, I do have the family history. They say that it looks fine. Now some people are telling me if it was dissection it may not initially be seen. The only good thing, is last year it was really bad, but I had gotten somewhat better. I don't think it would get better, but maybe. I have had a MRI/MRA of my head/neck recently that showed nothing. At the time I asked them to do the back also, since I have scoliosis and wondered if maybe that could be pinching on something. But they said no. Last year I did have the 24 hour urine in the hospital (a 4 day stay) and I did have some high values, but they were not double or triple the amounts so they said I needed further testing. Now I did have an MIBG scan last summer and the techs felt I was going to have answers, but when the report came back they said inconclusive, that the high uptake on the adrenal glands may or may not be something, Then the CT scan, and they said no. Months later, when I was doing better I had a blood test which they said meant I didn't have one. But. I thought I had read that if you are not in a flare it may not show, it has to be while you are doing poorly (like now). I do wonder about this. Because my triggers are stairs, cannot do them at all! Bending, now that had gotten better, but now no bending. Try living without bending. No fast aerobic activity (running, jumping, etc...) And lately the action of siiting and sometimes getting up and now any car rides, makes me think something is being crushed/irritated whether pheo or some thing else. I wish they could put you in the hospital and just run all the tests. Also when they want to fool around with your meds, they should have you inpatient or have some one with you. The hospital that did the tests only do about 12 a year so I want another doctor to look at the results. I planned on getting them Friday but then had a huge episode that was brought upon by putting my daughters clothes away. This was something I could do one month ago today! MomtoGuiliana - I have been re-trying the breathing and meditation. And I wish I had a doctor/nurse that I feel is helpful. If I call the cardiologist I have been seeing lately, they will say go to ER or try this new med. One nurse said they usually send patients like me out, when I asked what she meant she said they don't know what to do with us and send us to Dr. Grubb or CC or.... My primary said she has no idea. The CC doctors are hard to get a hold of and I think they were hoping for a clear POTS diagnosis and now are not sure where to go, I have told them I need some help no matter what. If I had a doctor that I felt was in my corner that would be so great. Bebe, - Thanks I used to take ativan but it didn't seem to help and I figured why muddy the waters so its been over a year since I have had it. I was wondering about xanax. I also called a therapist to talk about the chronic pain/illness and fear. I am suppose to see them later this week, I have read all of the panic and anxiety books in the past. About ten years ago I had a bunch of physical symptoms that were ruled panic, (now I wonder) so I went thru all of the books, therapies, etc.. Last night was the worse in a very long time. The neighbors were in the backyard watching playoff game on big screen and I was trying to visit even though I felt terrible. I went with one neighbor to her house and she has 3 steps, one steep and I swear just going up them triggered my bp and heart rate. I started to get left sided chest pains. I breathed deeply and the rest of the time I felt worse and worse, with my back hurting me. Finally I went in the house and took my bp it was 140/101. The 101 scared me and I told my husband I was sorry and I had to go in. It went down while I got ready for bed to about 130/95. But pulse rate super high too. My back was killing me. It could be some messed up nerves but I keep freaking its a dissection or heart attack. Crazy i know but. I am peeing vast amounts that are more than I am drinking. I got up at 3 a.m. and when I went back to bed I knew it was bad so I took bp standing and it was 156/97 heart rate 115. Just from out of bed! So I took an additional 1/2 beta blocker that I was told I could. I felt terrible the rest of the night but taking my normal dosages in the am and lying down for a while it has gone down some. But I feel awful. My back is aching burning in those spots, if I bend I get intense pain, in my upper abdomen and back. and I am having some pain in my hips too. Just making pancakes which takes about an hour caused that. So I am sitting in my front room not sure what to do. My mom says too much sitting maybe causing my body to decline, but I have been going out walking. She feels this isn't enough, but when I ask what I can do, since anyother stuff sets it off. She has no clue. I have a twelve year old who I am trying to not freak out in front of her. My hubby is not home, so I am just praying it doesnt get worse. Sorry this is so long. I just feel like I have no where to turn. Even if I have to go to ER the close hospitals are little and don't know what to do. So do I drive an hour and will they even do anything.? I am trying to wait out the holiday weekend but wonder why, cause who is going to help me then? Did I tell you this, my sister in law who lives far away told me to look up a "certain" religion to use mind over matter and to get a prescription for marijuana!
  20. I used to love coffee, but about 10 years I started to have reactions to it. Heart pounding, red face, anxiety, all that lovely stuff. May be related to pots, or just be a sensitivity to it. My brother and dad have problems with it also. Not my mom though, she drinks pots of it everyday. I used to drink decaf, but too many of them have caffeine in them too. I think Folgers is the best 98-99% caffeine free.
  21. So this is one of my problems. FEAR I have been feeling extremely bad again. I haven't felt like this in a long time. I wasn't cured by any means but I was able to do many things I hadn't been able to last year. I would avoid certain things and would still have some bad days/weeks. But now I am really getting bad and I am getting scared that this is more than POTs. Yet, I have to wait to have things checked.No one seems to really care, how freaked out and in pain and limited I am. I cannot bend not even a little and I get bad pain, below my right rib, more near the sternum. The pain has one spot that is intense but it spreads to the whole area and also my back in that area. When this happens my blood pressure skyrockets. Yes, I know it could be from the pain. But this continues for hours, and sitting will make it worse. I get sick to my stomach and just feel overall awful. I usually have to lie down. Yesterday, lying down wasn't helping as much. Today, my husband drove us to a store about 2 miles away, the drive seemed to cause me problems and then just pushing the cart and putting stuff in cart made me feel bad. So now I can do very little. I got out of the shower and even walking seemed to cause some pain. I am making my self keep walking, because I am scared I will end up like last year and not be able to even sit up. I get scared its an anueryism, an organ ready to burst, a pheo tumor. I just get plain scared. I have tried finding some meditation sites and try to calm down, but then it will happen again and I freak. How do you deal with the fear and pain? I am a very educated person, I know fear is not helping me, but I just can't get a handle on it. I wish I could just go to a hospital and ask them to figure it out, but as we know that is not how it works, i will only have that happen if it gets even worse.!
  22. Just wanted to chime in, my friend just saw Dr. Grubb this past month, so he is in his office. He may not see as many people as before. I know there are health issues in his family. But his assistant Beverly , is seeing people also. I have been told that he will consult with doctors over the phone if they call him for help. Your doctor could try calling him to see if he would review your tests and give your doctor suggestions. Again, that is what I have been told. I asked the nurse at my cardiologist office, if he still did that and she said no. But my friend who went recently, said she called Dr. Grubbs office and they said he still did.
  23. It's odd, but I tried to eat really healthy when I was really sick and it did not help me. I finally needed to gain weight really bad. So I decided i didn't care if it was fattening food or not. I discovered for me, that i feel better when I am eating protein. So unlike others, meats are something that really help. Now I do buy mostly lean, organic beef and chicken. I also do eat sweets. I just avoid things I know bother me. Carbonated beverages, alcohol , greasy food, extremely salty food(I have the high bp ), and some dairy seems to bother me. To gain my weight back, I ate hostess King Dongs (I know they are called King Dons too), and ice cream bars everyday. I am not saying I don't eat fruits and vegetables also, I've always fed my family healthy. But for me I need some protein and fats in my diet. Oh, and I do eat carbs, I always have had a craving or them, I haven't noticed a problem with eating them.
  24. Concierge medicine, is like buying a membership. You have to pay the doctor a monthly or annual fee to him/her. Sometimes on top of any other charges, and they often do not take insurance. So you probably would have to be well off to have one of these. But because of this they have fewer patients and spend more time with you. Some will go to specialist appt. or even meet you at the emergency room.
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