caffeine and POTS & all alone

[sonya12]

I have recently been diagnosed with dyautonomia and POTS. I am a 41yrs old women, who until October was very active, worked and had a normal life. Now I have to watch how I eat, what I drink, med side effects, anxiety from not being in control of anything anymore. Is there a light at the end of the tunnel. MD here in South FLorida stated to me that I just have to deal with this diagnosis, and this is your life now. No HOpe????  I am wondering if you tolerate caffeine. I am having a hard time with this diagnosis, I feel all alone. Family not supportive, think its all in my head. Any suggestions??

[LivingInHope]

I have P.O.T.S., I.S.T., I.B.S., G.E.R.D., chronic migraines, and I.C..

For me, I'm not supposed to have caffeine, as it could make a number of things worse, including my tachycardia.  

I also have SOMEWHAT gotten used to the chronic nature of my P.O.T.S., having been diagnosed back in 2004, so know that in time, you too may basically adjust to your new situation.  Sitting on the edge of the bed before rising, a shower chair, avoiding certain medicines, etc. are all adjustments, so give yourself some time to get accustomed and meanwhile, I encourage you to take comfort that P.O.T.S. is not considered life-threatening and you definitely are NOT alone in suffering from this condition.

[dawnsc78]

I don't know that I can offer helpful advice, but I do now how you feel. People do not understand the disease. I have had people talk about me and joke that I am lazy. They have no idea how it feels. I went 32 years living a normal active life and then I got derailed with all these medical problems. I pass out multiple times a week. I have pain all the time, headaches, digestive issues, the list goes on and on. I can barely get the dishes washed before I feel exhausted. My whole life has changed and people made me feel crazy because of it. Thankfully my soon to be husband and parents are so supportive. My primary care doctor was also so supportive. She never gave up on getting me to as many doctors as necessarily to figure this out. I still feel like there is no end in sight though. I have had no improvement of symptoms and do not know how I will return to work, yet I have to battle the disability company that doesn't see a reason for me to not work. I am sorry to use your post to vent, I just wanted you to know you are not alone. It is a really tough diagnosis to live with. You may want to consider seeing a counselor, it is really therapeutic for me to go talk to someone that I do not have to have a filter with. Just venting to people that understand can alleviate some of the stress of being judged.

[miamijnt]

Hi, I am also in South Fl and just diagnosed with dysautonomia.Dont know if u are still on the board but would like to compare notes if you are?

[techiemom64]

great post!!

[techiemom64]

Hang in there, I understand how you feel. I was diagnosed with dysautonomia about 4 years ago. My doctor was much the same. He told me that he has patients that just learn to live with it, and that at some point I will have to give up my career because I would be totally disabled.
He was not much help. It made me turn to the internet and seek out forums like this to see what people are doing to control their symptoms. Through trial and error I have found what seems to help me best.
It is difficult for people to think there is anything wrong with us if they see us functioning fairly normally. Its not in your head!! It's  life altering,but there is hope! I found that it takes lots of balancing what you can do with what you want to do. I watch my diet carefully, have to get lots of rest and I have to say no to a lot of activities that I used to do because I dont want to have a major fainting episode!  Hang in there and feel free to add me as a friend!

[Bromley]

Almost forgot. For the most part, caffeine helps!!

[Bromley]

Hi. I am really sorry to hear about these diagnoses. I was eventually diagnosed with Ventricular Tachycardia, and it seemed like a lot to deal with.  Moreover, I can not say that I am an illustrative, good example of how to deal with such life changing circumstances, and I am no medical professional. And I am the type of person that people are apt to think when I say I am having problems that it is just in my head.

I must say that I do sympathize.  It can be difficult enough to come to terms with things like this, but it can be made even more challenging by remarks that seem to relegate you to some state of being totally "alone" in any sense of the word. Certainly, as a treatment option, this seems like complete nonsense to me.

I suppose that I am really in no position to criticize what your doctor is doing for you.  I would like to say though that I appreciated my doctor's tact with me.  Inspite of my discouraging ablation outcome, he suggested that I should live my life to its fullest.  I think I like this approach better that the "just deal with it" approach. For the most part my doctor had made me feel that is with me, that there is good medicine in many places these days to tackle or help "deal with" such ailments. So I do not feel alone.

As for family supportiveness, I hear you.  I think that even caring people can sometimes lack the ability to digest and process large amounts of information when it doesn't apply to them. It is so much easier to see things based on what they, not you, already have in their heads. Hence, how can they empathize when out of necessity you have done your homework?

[shaydav]

I feel all alone too and am having trouble accepting my neurocardiogenic syncope.  I am worse now than I was two months ago when I was diagnosed.  I hope others respond so we can find out what to do.