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vemee

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Everything posted by vemee

  1. Add another symptom to my list, I never heard of prostratitis but the symptoms are similar to what I experience every now and then. The prostrate checks out normal during physical exam and blood tests. The last blood tests showed a slight indication for kidney disease. My blood pressure also rises when I stand and I have severe pooling (44% drop in circulating blood volume). Fatigue is almost everyday, periods of insomnia due to what I call adrenalin rushes. Brain fog, light headiness and confusion. Bloating and I put on weight very easy perhaps due to lack of activity (I use to be very active) but I wonder if I could be developing cushings disease. I also can not keep my ferritin (sp?) above the lower limits without taking supplements. The level stops dropping shortly after stopping the supplements. My wife thinks I have a tick borne disease and there may be something to that or maybe some other infection but getting tested is like pulling teeth. When I ask to be tested they keep giving me the cheap test that is not that accurate, supposedly lyme disease is not that common in this area ( however, I have known several people who have had it.)
  2. I can't say if going from celexa to effexor in one day is a good idea but I would recommend she have her serum norepinephrine levels checked before going on effexor. There is no use increasing those levels if they are already high in fact it could be detrimental if they are increased too high.
  3. It is probably the virus that is causing more problems than usual. Also you've got to remember that he has only been on midrodine for 2 weeks or so and it has not had time to fully run its course. While he is waiting for the medicine to take full effect he is still going to be susceptible to all of the environmental things that make pots so enjoyable. The fact that the doctor said his vitals have improved due to the midrodine is encouraging because it shows that the medicine will work with his system. I can't predict what his final status will be but it should be better than it is now. It took about 1 month for my daughter to feel a lot better and that was in cooler weather. She was still making improvements after 2 months on the meds. So don't get too discouraged, you are just at the beginning of the healing process and he just went through a major physical stressor.
  4. After rereading my post I realize I never made the point I had intended to make, instead I went off venting about the negative things that have happened to me and I apologize for doing that. I do believe that medical doctors use the mental health diagnosis too much and that it is an easy out for them. We get pushed onto the psychiatrist who has to assume that the medical doctors have done a complete job of eliminating all physical causes of a problem. I was trying to say that I got involved with mental health because "nothing was physically wrong with me". My psychiatrist was always there for me and supported me, when pots started to get severe we discussed the fact that the medical doctors would claim I had anxiety and nothing was wrong. He decided to treat me for anxiety so that if the symptoms persisted then we would know that there was a physical cause. The sad thing is that even with that preparation the medical doctors refused to accept that it was not anxiety.
  5. I have heard from several nurses that doctors do not like patients who do research on the internet. They think all of their patients are too stupid to filter out what is not applicable to them. They love stories of women who want to have their prostrates checked. I was tempted to walk into that doctors office and ask for a pelvic exam since men also have pelvises but the sarcasm would escape him I am sure. If I had not managed my own care I would have never been diagnosed I had to figure out what might be wrong with me and find doctors that knew enough about the subject to confirm the diagnosis.
  6. Maxine, I remember you speaking about that nurse earlier. I hope she isn't still bothering you. She really sounds like the psycho type.
  7. The name of the blood test is plasma free metanephrines and it is suppose to be the best test for diagnosing pheos.
  8. I received the results for some blood tests today from my primary provider. The blood work did not show anything too unusual but the shock came up on the patient information where it says sex, there was an f next to it. I assume it means female since if it stands for frequently that would be totally untrue (just ask my wife).
  9. I wasn't diagnosed with a pheo but I did go to NIH on the suspicion that I had one. Nothing was found and my chemical tests came back negative. Did they do the blood test on you that is suppose to be 99 % accurate? It has been out for a couple of years but I don't know if it was out when you were at NIH.
  10. I'm sorry I saw this topic because it makes me want to vent about all the stuff I've gone through with the mental health people. Back in the early 90's I was trying to find out why I was having fatigue, brain fog and mental clouding. The doctors told me there was nothing wrong with me and it was probably anxiety/depression. At the same time prozac was being hyped as the cure to a grumpy world so I went to a counselor to see if I had hidden depression. I did not feel down in the dumps in fact my life was on an upward swing at the time. I was told I was severely depressed and sent to a psychiatrist. After trying several different medications without results I had a reaction to either a norepinephrine uptake inhibitor or a steroid I was taking for my lungs. At the time we blamed the steroid but after learning about my high amounts of norepinephrine I wonder if that was the culprit. Any way I was in clinical depression for over 2 months and had to stay home from work. I don't want to drag this out too long by going over the past 15 years just suffice it to say I bounced around between different psych drugs. When the pots became severe and I tried to get a diagnosis for my problem all I ever got was "it's anxiety". Even when I had a heart rate increase of over 40 bpm on a tilt table test I was told there was nothing physically wrong with me and that I was depressed (This doctor was even more mocking than the others). It wasn't until I went to Cleveland Clinic where I was taken seriously. My psychiatrist was supportive during this process and had pretty much ruled out anxiety since he had put me on meds to combat it and I was still having problems. He also supported me in my quest to get a pots diagnosis and even said that specialists feel they have to say something so they are quick to grab the mental health or overweight excuses. Sometime after diagnosis my new pcp and I thought we would try to reduce the norepinephrine levels so after consulting with Dr. Raj at Vanderbilt and my psychiatrist it was decided to get off of cymbalta, switch to lexipro and take clonidine. I had a reaction to the withdrawal from cymbalta and became very agitated. I went to the er on the advise of the psychiatrist's nurse to get voluntarily admitted so they can monitor my meds. The ER was a disaster, instead getting to the psych wing in a reasonably timely manner I had to sit on a cot in the middle of the er for 4 hours waiting for whatever. After 4 hours I tried to leave, was tasered and quickly sent upstairs where I was involuntarily committed, declared to be bipolar ( my normal psychiatrist was out of town at the time) and heavily medicated. As a result of being put on haldol for several months I developed a blood clot which broke up and gave me multiple pulmonary embolisms in both lungs. It has been 2 years since all that happened and my psychiatrist gave up his outpatient work so he could focus on his hospital work. He allowed me to get off the antidepressants and to reduce the tegretol to a minor dose since the drugs were only doing harm and no good. When he left I went ahead and got off the tegretol completely and I feel great. No depression, no bipolar nothing but pots (well I feel crumby with that but at least not mental). I went to a counselor after my psychiatrist left to decide if I really was bipolar; she talked to my primary care doctor and then told me all of the negative things he said about me like "I spend too much time researching things on the internet I can't possibly understand". Her point was basically to show that I was too stupid to question my bipolar diagnosis even though I found research that showed significant drops in norepinephrine cause agitation and even violence. That and other statements indicated to me that my pcp did not really take my pots seriously (he never did anything to treat it but he complained I tried to manage the direction of my own care by wanting to go to Vanderbilt). I dropped the counselor or rather she dropped me because she wanted me back on the drugs and I dropped the pcp since I felt that if I brought anything up to him he would just roll his eyes and think I had just found something else on the internet. I am not even going to mention anything about depression to the new doctor.
  11. Thanks for the info on beta blockers. I just got back from my doctor when I read your post. I'll have to bring it up to him on my next follow up.
  12. I feel like I am suffocating lying down at times. It has been worse since I was put on a beta blocker. There are times when I feel like I need to take a deep breath and have to make several attempts before I can take one.
  13. I don't think it is just pots. There may be several conditions that could cause this but the one that sticks out in my mind is a pheochromocytoma which is an adrenal tumor. This condition is not that common but it does mimic pots except you get symptoms while lying down as well as standing up. There are some links about pheos on this site and even though they are tumors the large majority are benign. I'm sure others will come up with more likely answers. It would be a good idea to talk to your doctor about your symptoms but be prepared to argue against the panic attack diagnosis.
  14. Yes I experience this also. Just recently I went for a ride with my wife and I could barely hold my head up. Same thing happens with my arms if I hold them up too long. I think it is a blood flow issue and the muscles aren't getting enough blood.
  15. I found the comment about the aberrant breathing during the vasovagal syncope to be interesting. When pulling on something such as a starter cord for a weed trimmer I would start to black out and my breathing would change. I could never observe the type of breathing because I was too involved with trying to stay conscious. I have about 3 different ways to pass out and I have been able to observe what was going on in 2 of them but the one with the weird breathing is a mystery to me. I don't believe it is hyperventilation but instead it seems to be that I am holding my breath.
  16. I know how you feel. Being a man it is expected that I be the one who gives up my seat. I usually do unless I am already feeling bad and just don't care at that point.
  17. Someone one in another thread recommended the book "Just Fine, Unmasking Concealed Chronic Illness and Pain" by Carol Sveilich. I read it and it is a good book that covers what we all feel in dealing with chronic illness. It is hopeful and gives positive direction without being unrealistically cheery. It was a good read for me because it showed the feeling of loss and guilt I experience is not uncommon in people with chronic conditions. I know you said in the last thread that difficulty breathing was normal for you so I don't want to belabor the clot thing but I did become concerned when you said your leg looked bluish other night.
  18. I can't give you a whole lot of advice about your supine bradycardia but I have seen Dr. Fouad. She is very knowledgeable and should be a great help to you. She does a lot of diagnostic testing and research but I do not know how she is on follow up. Cleveland Clinic has a hotel just across the street from it that is pretty reasonable. The concierge at the clinic can also be helpful; call them and find out if they can coordinate your stay so that any tests Dr. Fouad runs can be scheduled during the visit. You want to try to avoid a wait between your initial appointment and any tests. Also they can find out how long until the results are available so you can decide if you need to wait in Cleveland for the results. I experienced bradycardia years ago where it would go down to around 42. The doctors weren't concerned but they did not try to explain what was going on either. It is good you are going to Dr. Fouad to get an expert's opinion.
  19. If you go to Vanderbilt you will have to stop some meds, they can tell you which ones you will have to stop.
  20. I agree with Ramakentesh if nothing is happening with your local doctors you need to go somewhere that specializes in pots. You can go two ways with Vanderbilt: the first is as a research patient which might get you in faster, the second is as an outpatient to the autonomic clinic. As an outpatient you will get your tests back quicker that as a research patient but I believe the wait for an appointment is several months, it has been over a year since I heard anyone say how long they had to wait for an appointment. As a research patient you could be involved in studies that last over 2 weeks. The doctors that conduct the research studies also run the autonomic outpatient clinic. You also might try the National Institute of Health which is conducting studies on rare diseases. Pots is on the list of what they are studying but it is hard to get accepted into the study. Cleveland Clinic is also a good place to go as well as the Mayo Clinic.
  21. The bluish color of your leg last night may mean you have a blood clot. Do you feel like you can feel the affected vein? it might feel like a hard cord. Do a google search and compare your symptoms with the ones they list but remember blood clots don't always present with all of the symptoms and some times they have none. I know a fever can be a symptom but even that is not listed on all sites that talk about symptoms. I used to be a firefighter/emt and have had several cases of people dying from pulmonary embolism without showing evidence of them. I am not trying to scare you but I think that with your leg looking blue you need to see your doctor or go to the er. I am not sure that your legs feeling fine today is a good sign or if the pain from a clot can be intermittent. I hope I am just over reacting and that nothing is wrong but it would be better if you got this checked out.
  22. You are right blood clots can't go from one leg to another. If you develop a fever, have difficulty breathing or other symptoms that are not normal for you get to a doctor but if it just seems like the same type of charlie horses you have had before you'll probably be ok. And since you got me hungry for garlic bread keep eating garlic. I was thinking about pots pooling causing blood clots and I think there is a relationship for some people. If a person who has pots also has an abnormal clotting factor such as factor 5 then they are at greater risk for clots. Factor 5 is genetic and is not a result of pots but they always tell people with factor 5 not to cross your legs, sit longer than an hour or do things that lead to blood pooling in your legs. It would probably be a good idea if pots patients with a lot of pooling got tested for the clotting factors. The problem is that insurance would probably not want to pay for such an expensive test when it was being done as screening.
  23. Isn't it nice to have a doctor praise you for your research instead of insinuating you are not capable of knowing what you are researching? Dr. Abdallah is a great doctor, your son should start noticing an improvement in a couple of weeks.
  24. Since your leg has been swelling it might be a good idea to see a doctor as soon as possible. You may end up feeling silly if it is just a cramp but it is better than the alternative. I had a blood clot that started at the bottom of my foot, it felt like I was walking on a pea. The doctor of course said it was nothing (there is never anything wrong with me). The clot then moved to my calf where it felt like a cramp. Actually it felt like the after effects of a cramp and lasted for a day or 2. I developed a fever and went to the er where they found multiple blood clots in both lungs. If I had waited longer I would have died. Not the best solution for curing pots. I don't know if pooling caused by pots can cause clots, I have a genetic factor (factor 5) which makes clotting more likely.
  25. I agree with Earthmother leave this guy and don't ever tell anyone you were there if you have to give a list of physicians you have seen. He wasn't even listening to you and the gun questions means he was thinking you were a danger to yourself and possibly others. I don't know what you can do to change what he puts down on your record, if there is something I would like to know because there are a lot of "just anxiety or depression" diagnosis I would like to change. I am in the process of changing doctors because my former doctor felt I was taking control of my care and going off in another direction. He was not treating me for pots in fact no one was treating me for it, so I tried to go to the outpatient clinic at Vanderbilt but he was against it for some reason. I went to a counselor for help in dealing with a chronic disease who talked to my doctor and then told me everything he said. I thought she was unprofessional by revealing what the doctor's opinion of me was but at least I found out how he feels. He would not have been happy I've started going to a pots specialist. He also told the counselor I spend too much time on the internet researching things I can't possibly understand. So I am too stupid to participate in my own health care. The counselor agreed with the doctor so they are both fired.
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