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When Do You Decide This Is As Good As It Gets


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I wonder if anyone else asks themselves is this as good as it gets? Let me clarify by saying I am lucky enough to be able to work part time, I just do not have the energy to do much else. I do go to the grocery store, usually with my husband, but not a "normal" type of life by any means. I haven't tried alot of meds, but I am almost to the point where I do not want to try any more meds. I take a beta blocker, florinef, for the pots and now supposed to try ritalin. I do take other meds for other things. Is there anyone maintaining on no meds for pots? I did talk to a guy in my area who is able to work full time, but has a computer job. He takes no meds, but feel bad most every day.

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This topic has come up before - read some old posts when you have the time. I have definately struggled with this issue. I too can work part time but I am not like I was before. So the battle is to balance acceptance with with still trying to get well, being in the moment but still hoping things get better, becoming comfortable with what is but pushing for more.... When to accept a symptom vs. when to try a new med. etc. The is no easy path to figure this out. It is an ongoing process as we redefine ourselves and our relationships in light of our chronic illness while not being defined by the illness. Counseling has helped a lot - I recommend it.

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Today before I came on here I asked myself the same thing. Someone who thought they were helping said, 'maybe your going to have to say no to your dictors and not go to some appointments." I was shocked, and thought, you just don't get it!!!! Then I went to my wonderful cardio this morning and found out my plummary function tests hadn't come back normal this time. This time they bring back the question of chest wall weakness. Now we had something on an xray and my postural signs are now showing Paradoxical Hypertension. Breathing is now very difficult. I think my diolostic dysfunction feels like it is back. I'm so tired of all of this.

I came home and pass out from fatigue, when I got the name of the the person to contact to start a support group for pots. I can't believe the day is over and I didn't follow up on that. Grrrrrrrrrr, I'm in the middle of my MAST cell work up, but have been sooooooooooo sick I can't get in with my urine. A trip in takes a full day. I need to go back to the neuro in the city, and now I'm tooooooooo darn tired to be poked and put through more tests plus weaned off all meds to get a baseline. I'M TOO TIRED!!!

I have hydration tomorrow and they can recheck my lungs as my cardio was in awe. He had only had one other pt. with Paradoxical Hypertension and I'm allergic to most agents you would normally use. My list of questions was a mile long They are always WONDERFUL TO ME!

Sometimes, I laugh and have one friend that we say it is better if we never go to he doctor. Then we never know what is wrong with us. lol

But I'm on a mission...I do want to, no I am going to start a local support group in my area. How else can I learn if I do not have these things happening to me. At least some of them and I've been through a lot.

Wish me luck and if you live near Newton Wellesley Hospital I'll let you know when we get approved.

Bellamia~

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I wonder if anyone else asks themselves is this as good as it gets? Let me clarify by saying I am lucky enough to be able to work part time, I just do not have the energy to do much else. I do go to the grocery store, usually with my husband, but not a "normal" type of life by any means. I haven't tried alot of meds, but I am almost to the point where I do not want to try any more meds. I take a beta blocker, florinef, for the pots and now supposed to try ritalin. I do take other meds for other things. Is there anyone maintaining on no meds for pots? I did talk to a guy in my area who is able to work full time, but has a computer job. He takes no meds, but feel bad most every day.

Good question. Have you gotten to the bottom of the cause of your POTS? The reason that I ask is that there are some specific treatments depending on what is causing/contributing to your symptoms.

In my case, it's probably a combination of connective tissue disease & mast cell activation disorder (MCAD.) I can't do much about the connective tissue stuff, except be aware, and monitor for aneurysms/dissections.) The MCAD DX, however, was eye-opening. I found out that beta-blockers make me much worse and antihistamines make me much better. Had I settled before I found out that piece of the puzzle, I would have cheated myself from being as well as I am.

Have you always been sick? is it post-viral? Do you have connective tissue symptoms? Be sure that you've explored WHY you are the way you are, before you settle.

Julie

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You can plateau and take a "breather" for a while and still not settle. I am allowing myself that plateau right now. I have reached an acceptable level of function vs. symptoms----for now. I read about others going for a run, working full time and doing aerobics and am quite honestly jealous. I also know that some of those things I will never do because I have never been able to do them. What is difficult is remembering what I used to be able to do and accepting what I can do now. Accepting limitations is the hardest part since I tend to be a very "gung-ho" person. Maybe you just need a break from all the doctor stuff. Take what you can get for now and see if it improves. :o

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Be sure that you've explored WHY you are the way you are, before you settle.

Julie, I really like what you are saying here ... but what do you suggest when your doctor pretty much laughs at you when you bring in new ideas for the cause of your POTS? Last time I was in my POTS doctor's office I asked him about running several tests, including Lyme, and he actually told me that I was "chasing after a leprechaun at the end of a rainbow" trying to figure out WHY I am so sick. :o

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Yeah, they used to say that Giant Squid didn't exist until they caught one! :o Your doc sounds tired of looking. Every disease has a cause, whether we can do anything about it once we've got it is another story. I'll go leprechaun hunting with you anytime! :o

I think maybe he's too used to dealing with adolescents with POTS who most of the time seem to outgrow it. I don't really know how many cases he has of adult onset POTS/NCS that he is treating. He's very kind, seems very knowledgable, but is also very quick to just throw me more meds every time a new symptom comes up. He had me on eight different prescribed meds at one time (I never told him I wasn't trying all of them - it just seemed like overload, how would I know what was working and what wasn't?). Now he's completely useless to me while I'm pregnant, and he's admitted as much to me. In fact, at my last visit he said, "Well, come back and see me when you are done nursing in five years (not a big fan of the fact that I'm still nursing my four year old ;) )." :o

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I guess I'd write him off unless you get markedly worse. Actually, he doesn't seem up on the latest research...granted he can't possibly be as obsessive about it as we are if he doesn't have it. :o His attitude would have kept us all blaming bodily humours and curses for our ailments. :o

I do understand his concern about your nursing, but from a different perspective: he can't possibly give you anything that might help for fear of it passing into your breastmilk and giving it to the baby. I had to nurse my second son for an extended period because he is anaphylactic to dairy. I could not eat any dairy while I nursed him either, since the protein passed through. ;)

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I ask myself that but I'm not giving up!! I plan to keep searching for a better quality of life!! If I don't have the energy for it this week I'll wait until I do!! I will remain eternally optomistic though that all my hard work, praying, and determination will eventually make a difference! This can't be as good as it gets for me!!

Brye

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I do understand his concern about your nursing, but from a different perspective: he can't possibly give you anything that might help for fear of it passing into your breastmilk and giving it to the baby. I had to nurse my second son for an extended period because he is anaphylactic to dairy. I could not eat any dairy while I nursed him either, since the protein passed through. :o

Oh, I understand his perspective as far as prescribing meds to a breastfeeding mother. I never took anything that Dr. Hale did not recommend for a nursling (I talked to him personally about each medication, and when I started all of my meds my three year old was already down to only a few short nursings a day). I have no problem at all sacrificing my own body to be without meds for my new baby ... nursing is *very* important to me (and my little girl! ;) ). It's a lot different taking medications with a newborn nursling versus a four year old. :o

He's actually a nephrologist first ... POTS specialist second. He's the doctor mentioned in this article ... http://www.bendbulletin.com/apps/pbcs.dll/...05310408/-1/rss. I can not for the life of me find another doctor in Oregon who knows anything about dysautonomia. We drive four hours to see him. :o

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Sugar, we're goin' down swingin'!!!

This is a GREAT question. I ask myself it every day. I should feel settled by being able to work FT (even though its miserable), but I'm not settled.

I've had new damage in the last year with tonic eye and decreased hearing in my left ear.

If I don't keep pursuing a better way of life and a more complete diagnosis, I'm afraid of that this will just progress.

Every time you don't feel good enough to pursue a better life is exactly the moment you have to pursue it and for that reason.

Kits

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Be sure that you've explored WHY you are the way you are, before you settle.

Julie, I really like what you are saying here ... but what do you suggest when your doctor pretty much laughs at you when you bring in new ideas for the cause of your POTS? Last time I was in my POTS doctor's office I asked him about running several tests, including Lyme, and he actually told me that I was "chasing after a leprechaun at the end of a rainbow" trying to figure out WHY I am so sick. :angry:

Time for a new doctor. Seriously. You probably do have to take a break from most meds during pregnancy and nursing, but AFTERWARDS- you deserve the best life you can possibly have.

I have learned so much here & from my son's doc at Johns Hopkins. When I see my doc, I print off studies to support my ideas, and tell him what tests or meds I want to try. I can't say he always reads everything :D , but he's willing to treat my symptoms and let me safely try various meds, etc in an attempt to get me to feel better. Many here (me included) don't have a formal ANS doc. You just need a physician, who is sympathetic and respectful.

I couldn't pull up the article you linked us to regarding your doc, but it seems to me like he's resting on his laurels. If you have relatively NEW symptoms, there is a REASON why. If you've had symptoms all of your life, that possibly points to a different cause. Exploring the cause of your POTS is your choice.

Best of luck with your pregnancy. Very exciting & exhausting :P

Julie

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My Take On It

No, I do not ever ask myself if this is as good as it gets? Personally speaking, I have no idea if I will get better or not, so I do not ask the question. I doubt any doctor knows exactly what will happen to me either.

What I do is:

1) adjust as well as I can to my present reality ..... I've learned much on this forum.

2) pursue other avenues of treatment if they seem reasonable..... Again, this forum is invaluable.

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Thanks for all the responses. It was interesting to see that alot have pondered this question. My current dr thinks the cause of my pots may be what he calls biomechanical, meaning that because I have had alot of neck pain and muscle knots from fibromyalgia, he believes the cranial manipulation will help, and it has, but of course no one knows how much or for how long. It makes sense to me because the cranial nerves that control hr etc are are at the base of ones brain. Sometimes I think I could work full time, but since we have been doing okay financially, my husband doesn't want me to push myself too much. I have been for counseling re: the dealing with pots and how it changes your life, but he thought I was dealing pretty good, which was nice to hear, and of course this website has been more help than most anything.

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