summer

Hi All, Imagine if you could get rid of one of your symptoms... which one would it be?

Well done! I love hockey. Wish I could go (and watch!!). So good to hear things are looking up for you. Thanks for the encouragement --we'll keep trying!

Wow, Morgan. That is a truckload of stress.... and pain. I'm sorry things are so hard for you right now. Why on earth did they not admitt you????

This is the part I struggle most with too. I have lived my life being hard working, consciensious, and honest. It has made me feel angry at times to be doubted, and belittled by doctors. It has made me feel angry at times that in addition to being disabled by this illness, I have been asked over and over again to prove it. I do try to deal with the angry feelings and move on. It's just too hard to stay there for long, but I do think we need to acknowlege those feelings. I don't ever look at people walking or jogging by and feel angry, though, because I believe we all have our stuff to deal with, and many of them perhaps do not have some of the great things in their lives that I do. They may be suffering in a different way.

Thankful, You have such a positive attitude. You are right that we must all look for contentment in the life and relationships we have. Sounds like you have lots of love in your life already. I was also thinking... we have had some of the most wonderful support/respite workers in the life of our son. They have given so much to him and give us a much needed break. There are many ways to be involved in the lives of children who need it. Take care and all the best to you and your husband! Summer

Had to add... this is key! You are right on. I try to look after the important things, but lots of things are left undone. My kids are happy, but my house is a mess! Summer

Hi Thankful, I rarely get a chance to check out the chit-chat board. Actually, I have a difficult time keeping up with the dysautonomia board! This is my first post over here, but I just had to chime in on this one. God bless you and your husband for your generous, loving hearts. How wonderful that you want to share your home and your lives with children and possibly even a child with special needs. I just wanted to say that if this is God's plan for you, you can do it. Is it easy? Of course not. Is it worth it? Sooo worth it!! I have the three best children in the world. One of them has autism. When he was diagnosed at the age of three, I spent a lot of time imagining what difficulties he (and we) would encounter. And we've encountered them all. But the thing I could have NEVER imagined was all the joy he would bring us (and lots of laughter - he has such a unique perspective on EVERYTHING). I just wanted to say that however it is God choses to bring children into your lives, He will give you the strength you need. Do I ever feel guilty that I am not able to be the Mom that is driving my kids all over town, and having sleepovers every weekend? Sometimes. But one thing I know for sure is that my kids are loved thoroughly and unconditionally - and they know it! They are happy children and are learning many life lessons about being compassionate, and doing their share around the house. They are also a wonderful way for me to get my mind off myself, and think about things other than POTS. God bless you as you make such important life decisions. Just had to add this because I feel my kids and my hubby are the absolute best part of my life. Summer

I'm sorry to hear your appointment did not go well. It takes so much out of us to go through testing like this. Being treated disrespectfully by a doctor makes it so much worse. I also had a TTT without meds. My ANS doc told me if someone truely has orthostatic intolerance, it shouldn't take more than standing to show it. Your heart rate increase is all that needs to be seen in the TTT. POTS diagnosis does not require a drop in BP. How long did the doc keep you tilted up? I was upright for 30 minutes with a sustained HR increase, but no signifigant drop in BP, and no fainting. Negative TTT or not, that is POTS. I agree with Thankful. You should have the results of your testing interpreted by another doc. Summer

Yes, yes, yes!!!! I am so glad to read the examples you guys have given. They sound as crazy as some of the things I have done. I don't try to explain the severity of this fog to many people because I am sure they do not believe me. I have been in stores shopping and then found myself unable to remember which store I am in, and which way to go to get out. I have "lost" my kids in my mind a number of times because I did not remember they went to play at a friends house. I have been in church and not been able to find a number in the hymn book. I have looked at my watch and not been able to tell what time it was. It truely is scarey at first, until after a while you realize eventually it will go away - then it's just embarassing. Anytime I have tried to explain this brain fog, people always say, "Oh yes, I must have what you have. I forget things all the time......" Summer

Congratulations, Lisa!!!! Your little girl is beautiful! I remember having significant chest discomfort following the birth of one of my children although I do not remember it being associated with shortness of breath. I guess I never really did know why it happened, but over a period of a couple of weeks it went away on it's own. I did not have a c-section. Summer

I wonder about this often. I believe I would have been diagnosed with POTS in my teens or early twenties if it were now... and I did improve. I went on from there to get my education, have a career, marry and have my children... I guess I would have been one of those who "recovered", although I was never totally symptom free. Now, after 20 years, a virus has set me back and I am probably more symptomatic than ever. Summer

Dear Carinara, What a terribly sad day for you and your family. I'm sure you will miss Tami very much. Take good care of yourself and know that we are thinking of you. Sincerely, Summer

I also have had that same urge to kick myself on the way home from the doctor's office. The truth is that often I do feel better - relatively speaking. If I am not at work, able to rest whenever I need to, and control my own day and level of activity I feel much better than when I over exert. I am about about 2 years into POTS now (at least this more severe POTS), with my diagnosis for about a year. I think over time we get so much better at knowing our limits and listening to our bodies (when we can), that whether or not we are conscious of it, we do all we can to feel better. But over and over we find out that "better" is not neccessarily "well again". I have been the same as you over the past 2 years - not wanting to complain to my doctor all the time. I am generally a positive person and I like my doctor. As strange as this sounds, sometimes I feel a little guilty for not getting better because he has tried very hard to help me. Not only that, I really do want to be getting better. So I think sometimes I give the wrong impression and this does not help me in the end. I am learning this slowly. I find it hard to answer his question "So, how have you been doing?" I want to be positive, but for my own good I must be truthful.

Hi Katherine, Sorry this is causing problems for you too. If I figure out something that works better for me, I'll be posting it!!! Good luck with school. Some people have said that the brainfog tends to be worse at the beginning of POTS and that it can improve over the first few years, I'm still hoping for that! summer

Do you know if people with reduced bioavailability of nitric oxide neccessarily have elevated CRP in bloodwork?

My ANS doctor mentioned this but said that I was not hyperventilating during the tilt (they were measuring that too), so he did not think that was the reason for my decreased cerebral oxygenation. Your posts have been really helpful! I have started to do some reading about low flow POTS - it's sounding a lot like me. Do you know if people with low flow POTS have more cognitive difficulties? Thanks for all your help. Summer

Thanks Flop, That helps. I wonder how our doctors decide which BB they will perscribe for those of us with POTS. I wonder if one type is perscribed more often than another. Summer

Thank you so much for your post. That is really helpful info. I do have a lot of visual symptoms - snow, floaters, stars along with my brain fog - and migraines. Looks like I've got some homework to do!

I almost never faint (I have very rarely). With me, I get lots of warning if I'm going to faint and so I can almost always sit down, lie down, squat or whatever to prevent fainting. I am sure that fainting is not part of the diagnosis. When I had my TTT I was upright for 30 minutes with a HR of 140 - no fainting- but feeling like I was going to any minute --Yuck. Summer

Hi Sue, I think that you're right that the "POTS overdrive" while standing has something to do with it. In the study I mentioned at the beginning of the thread, the researchers were suggesting that, in POTS, the adrenaline released while standing actually causes the blood vessels in the brain to constrict, so that even though the BP should be enough to supply adequate blood to the brain, the constriction of the vessels in the brain prevent enough blood from getting to the cells. This results in symptoms of low perfusion (ie. lightheadedness, brain fog, visual changes, etc.). The study I read was from 1998 and I'm not sure if this theory is still current. I think it would explain a lot. I am also wondering if that vasoconstriction could be made worse by BBs which seem to make vasoconstriction worse in other areas of the body.

Always good to hear about the good days That's the "bright side" to this type of illness - we learn to appreciate the little things - a day without dizziness (or at least only a little dizziness)! Best wishes for tomorrow!!

Yes. You're right that we do all seem to react very differently to different meds. I guess it truely is a trial and error thing for us. Maybe I should try a different BB to see if I might have less brain fog. I'm still wondering about cerebral vasoconstriction. Is this the reason for decreased cerebral oxygenation in POTS? Is this why we have symptoms of hypoperfusion even with a stable BP? Has anyone else ever heard this?

Thanks for the info. I'm definitely going to look into this more!

I almost always have this super-sensitivity and skin pain in my left shin area. It gets worse after a warm bath or on a warm day. I usually don't have it in my feet so I don't know whether that could still be caused by small fibre neuropathy (is small fibre neuropathy always in the feet?) When I have migraines I get it on one side of my face. Sometimes my migraine seems to come right down into my cheek, but I also have "skin pain" in my face. I really don't know what causes it so I'm very interested in your answers.

Wow. That's interesting. I was not aware of BBs being selective or non-selective. The BB that I am on is also non-selective. I guess I'll have to look into that more and see what the differences are. You're right! That's a terrible trade-off to have to make. Thanks for the reply!