futurehope

To present a positive side to this, however, I have to share that his mother, my grandmother, lived to be 87. While there was no diagnosis of POTS or PAF or autonomic dysfunction, as I said in the previous paragraph, she was a classic case. They treated her for EVERYTHING. I think her receiving this treatment for all of these symptoms, as they arose, probably allowed her to live so long. And...she lived in her own home until the day she died. I'm sure she dealt with a lot of disability that we just simply not understand at the time, but you know, it didn't turn out that badly for her. Just for reference sake, my father with his strange problems lived until 86 years old.

Oh, Tearose, I can relate. It was difficult watching my dad because they just attributed his problem to being "crazy". The doctors could never find anything wrong. The good news is (though it's not really "good") is that when he passed, there was no pain. He just went. No pain pills. I'm glad for that. He had all his reasoning up until the end. The nausea was a constant companion. It would be nice if they figured us out before we aren't here anymore, right?

I noticed for the longest time that when I read about POTS, the articles usually mentioned a young onset and good prognosis. I often felt that they had NO idea about me, someone who began getting really bad at 51 years old. Seems the researchers do not look at our subset of "adult-onset" of POTS as much as they look at the teen onset. Have you noticed that? Any comments?

Have you been on the Reglan for long? I felt horrible taking it. I'm assuming you have to take it, right? Also, has your beta blocker improved the quality of your life? Are you seeing/feeling any benefit? Things I have done to improve sitting time: Any amount of walking exercise you can do can improve you. Do you exercise? Do you wear compression hose either 20-30 hg or 30-40 hg compression. Are you able to salt load in the morning like with V-8 juice? Are you able to tolerate any amount of caffeine like in a chocolate bar? It may help. Get up early enough so your body has time to adjust to the sitting - this may or may not help. Wherever you are, see if there is a place where you can put your feet up. If not, can you lean forward onto your hands which you can rest on your knees. If you start feeling too weird, get up and walk some. The above are things I have done. If I think of something else I will let you know. I totally understand how difficult sitting can be as I have the same problem. Sitting or standing are difficult for me.

Broken Shell, Your answer was so accurate and descriptive that it is worth printing and showing to a few people, including some doctors.

Food for Thought: Picture This: A perfectly healthy human being Who has plenty of money Who is good-looking Who is talented Who is idolized Some of the above people deliberately put something into their bodies to make themselves malfunction, stuff like drugs and alcohol. That's a human for you?! What's my point? You sometimes fall into a trap of "if only I had this" "if only I had that" I would be happy. Remember, there are people out there who have it all and are still miserable. You're chasing a dream if you think "something" is going to make you happy. You need to learn to be happy in whatever situation you are in, because the "things" you are chasing are fantasies. Stay in reality. It's the best place to be. Another thought to help to stay reality based: If you could see inside your body to see what all the anger, resentment and jealousy are DOING to your body: the negative impact, the deterioration of your immune system, the inflammation..... You might think twice before falling into the "poor me" syndrome. Unless your goal is to make yourself sicker. And I certainly hope that is not your goal. Okay, off my soapbox. Momtoguiliana, I agree with your wonderful comments.

My uneducated guess is that your adrenal hormone (cortisol) is the highest in the morning and the lowest at night. Your wife is probably sensitive to the effects of this hormone.

Amen, Sister.

A few suggestions: You could remind yourself that nobody is stopping you from going with your husband and sitting and watching, but only YOU know what you will feel like. So you made your choice. You are wasting precious energy with your anger because, again, you are probably doing all that you are capable of, and because you do not want to feel sicker, you've made choices. It is your CHOICE. You determine what you will try and what you think is worth risking a "setback" for. Granted, you have not chosen this ailment, but who has? It is now your choice what you do with it and how you respond. Until you breathe your last breath, you still have choices to make about how to live, and love to give to people or animals that need it. If you find yourself in an angry place most of the time, it may be wise to examine your "self-talk". If you say things to yourself like, "Why did this happen to me?" "I don't deserve this." "Why can't I be like anybody else?" you will bring yourself down in the dumps over the thing you have no control over. Will this self-talk change anything? Focus on what you DO have control over, which is your reaction and how you are going to live your life. I understand the anger, and, of course, people go through this when their life situation changes - someone dies, their job is taken away, their house burns down - but you must look forward or be doomed to live in the past. It's your choice.

I think it stands for electrophysiologist.

Rama, Are you a researcher? You often seem to have a lot of information and you are articulate in sharing it.

My favorite description to explain this to someone is: "Sorry, my brain isn't working right now."

Silly me. Our blood circulation probably is deficient in our head and neck especially when upright. This probably affects healing (of nerves) in the area. Just my uneducated guess.

I had no idea of a problem under an existing crown. A routine x-ray showed decay (they showed me the x-ray) under the crown. Dentist did major drilling to demolish the existing crown, fill the new decay, and build up tooth for a new crown. At 3 week mark, the tooth still bothered me, and I was hesitant to put a crown on (the tooth was probably cracked by the drilling). I had a $940 root canal. The tooth felt even worse. One week later, returned to endodontist who did a second root canal on it in case he had missed a root - he had not. Tooth continued to hurt. Endodontist told me to wait 6 weeks to "see" what was going on. At this point, pain was radiating up the side of my face to the upper arch and to my temple. At 6 week mark, tooth still did not feel right when pressing from outside to inside on it. Endodontist said it was a probable fracture to which there is no remedy except for an extraction. I researched on the internet to convince myself that it was a probable fracture (wish I knew about it before I spent $940 on a root canal). Had the tooth extracted which sent my pain to 50 times worse. It's been an experience. I have no idea if it was really cracked, or my "sensitive" nervous system needed more time after the redrilling and/or after the root canal to stop the pain?! Now, I seriously wonder how I can survive a tooth implant? Anyone had one?

oh Julie, I can so relate. The pain is a killer. It radiates around the jaw to the ear and up to the temple. I refuse narcotics as well. They make me sick. But I have been living on massive doses of ibuprofin with some tylenol in addition. I hope I didn't have a tooth pulled for pain that would have disappeared after another month? I had waited 6 weeks.

I do not.

Thanks for the response. I can certainly relate to what you said. I seem to take longer recovering from anything.

I'm noticing something else about myself. I had a problem tooth - long story - which I finally had extracted, one week ago. Instead of "curing" my problem, the nerves in the area remain inflamed causing pain and forcing me to take pain pills. According to my oral surgeon, this is not unheard of for a lower molar. I think, after looking back on this "unending tooth saga", that my facial nerves get traumatized easier and take longer to come back to baseline. Is this another symptom of POTS? Is my nervous system malfunction contributing to the longer than normal recovery to a routine tooth procedure? Any thoughts?

Very observant comment. I tend to agree. Reading these postings is an eye opener. On the one hand, we are told that if you have onset at a young age, your chances of recovery are higher. On the other hand, MANY on this thread DID have symptoms at a young age (including me), and still have symptoms. I'm back to my usual conclusion which is, doctors do not know. Really now, I do not mean this thread to be a downer. Why? It is obvious to me that doctors DO NOT know how your symptoms will progress or not. Bless the hearts of those doctors who have the fortitude and stubborness to keep trying different methods to get us to a better place. I DO remain optimistic that once the researchers understand the malfunctioning body system(s), they will be able to employ more useful remedies. I look at it like the early stages of understanding diabetes, or multiple sclerosis, or Alzheimer's. Each one of us has to make daily decisions about what we can handle or what we need to avoid. It becomes routine to think this way. We are all making the best of a situation. But my signature says it all:I have Futurehope. POTS and all its variations will be understood more and more as time goes on. BTW, I do not want to discourage anybody from figuring out the cause of their POTS causes like MCAD, Ehlers-Danlos Syndrome and others. If a cause for your POTS can be found, they can target the need better. To people with Ehlers-Danlos as a contributary factor to POTS: How do YOU view your POTS? Has it improved? Has it stayed the same? Has it worsened? Or have you learned to cope with the malfunctioning body parts enough to improve your quality of life? The above questions to EDS patients is the kind of questions all of us will be able to answer once we know more about the malfunctioning body areas. There is always hope and I do not want people to ever loose sight of that.

As for working, a big part of being a worker is being predictable. Yes, most of us can do certain things on "good" days. It's the fact that we are unpredictable that makes us unreliable as workers. As for the doctor seeing me on a "good" day, my doctor has seen me on both "good" and "bad" days. On bad days he will see a narrowed pulse pressure after I've been standing a while. After all these years, he knows better than to think I've improved permanently. Good one day. Bad the next. He is familiar with POTS and understands.

You definitely have a point about going to doctors less. Bless you for everything you do and for plugging away for your daughter's sake. You're my hero.

I commend your doctor. That is the only time I have heard any doctor say that. It took guts for him to be realistic. He must have thought you could take the truth as he saw it. But, I doubt he really knows what will happen. The truth is, you are all heroes in my book. You push forward with limited knowledge, and do your best to get the most out of life. As far as I'm concerned, doctors do NOT know what will happen in each individual case, especially in us cases that are first diagnosed later in life. I say that because when young, sudden cases appear, doctors seem optimistic that the people involved will improve. Well I wasn't young when diagnosed, and my onset wasn't sudden. I really did not mean this thread to be a downer. I just wanted a "reality check" as regards to the subjective data that I see on this forum....we all used to be able to ......, now we can't.

I think we get so used to denying reality on a routine basis in order to "push" through a day, that we are usually "in the mode" of denial on a routine basis. This is of necessity, since we would stop in our tracks and do nothing if we "listened" to our bodies. Our bodies do not work properly, but we do the best we can. We're all heroes in my book. Now, as to what you tell a doctor, whether it's reality based or not, my neurologist has found a way around that subjectivity... When its my turn to go back into his office, he puts a blood pressure cuff on me while I'm still seated in the waiting room in order to take my blood pressure/heartrate. I then go back to his examination room and he has me continuously stand and he takes my BP at intervals. He can usually tell by my heartrate and blood pressure readings how I'm doing. IOW, he uses the objective data from the blood pressure cuff and pulse, as well as what I say, to determine my status.

After reading the postings on this forum about how many (me included) used to work and have now "progressed" to unemployment due to disability, why do I often read that we "get better"? Obviously, if I look at the entire span of my life, I've gotten worse. I've felt "better" on occasion, but the general trend is down over time. Why and with what research do they say that some "get better"? They do not even know that much as to the different causes of POTS and what to do about it, yet they can make a blanket statement about how we might get better?! I've told my neurologist just what I told you, that if you look at the entire scope of my life, I'm obviously getting worse, since I used to be able to work, to ...., to .... to .... fill in the blanks. My life is drastically altered, in sum. I guess I'll answer my own question.... the ones who got "better" are not on this forum. I don't know how statements like "POTS can improve" can be made by professionals who really are in the early stages of acquiring knowledge about this condition? Do you see what I'm saying? Many of us have "progressed" from baseline to "not working". Shouldn't those unofficial declarations be indicative of what I've concluded..... that many of us POTsys are getting "progressively" worse? Do you have an opinion? Do you see what I'm saying?

I thought I'd add my 2 cents in here. Haven't I read somewhere that Ibuprofin (the stuff we sometimes take for fevers/pains in the U.S) can help POTS patients feel better? I'm asking because some people use Ibuprofin during an illness. Also, don't you think that a person under stress (because of fever, pain or traumatic life event) secretes more of the stress hormone, cortisol? Cortisol can raise your blood pressure. And while we're at it, isn't supplemental cortisol used to suppress the autoimmune response? I have no idea if I'm right. I just thought I'd put these ideas out there.