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I went to a pots specialist today, which I thought was going to be a great idea. Finally talking with someone who doesn't think i'm a nut, and understands what I'm going through. But, after speaking with him and hearing him tell me that it may be years until I get better if I do at all. And that I'm one of the worse cases he has seen. Its devastating! And the worst thing was, that my mom was there and she started bawling.

I knew that this would be hard, but hearing it from a doctor hurt so much more. I can't stop crying.

I also found out that I might have been suffering from this all along, and a mild virus I had in Oct. put me over the edge. He has decided to change my midodrine to 10mg 3x daily, .2mg of florinef (trying again), salt tablets, and exercise. He mentioned that I am pooling REALLY bad, within a matter of minutes my hands and legs swell.

I just can't accept the fact that I'm sick, and things might not change. I hurt so bad. . .

Thank you for listening,


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The thing I hate about POTS is that there is nothing "definate" about it. The docs don't know too much about it, of course more than they knew years ago, but still.....Don't give up hope though, I know meds help out alot, you just have to find the right combo, doses, etc. but you are young and have soo much in life to look forward too, so let's keep fighting!


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Guest tearose

I am sorry Nicole.

You are in shock now but you will pull through! Ya just have to!

You are young and you have a full and exciting life ahead of you. You will find your way. You must! Don't let the weight of this get you down...for more than a short time....that's why we visit the potshole....learn to be resilient. Keep being hopeful. Keep asking questions and keep coming to our little corner of the eworld!

You are not alone.

best wishes, tearose

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I know news like that can be devistating but please still try to hold on to hope for a better future.

What about a second opinion? I know from bouncing around that not all doctors have the same opinion. I know the treatment plan probally won't change but it might help your piece of mind to see if another doctor feels the same.

It's just a thought. Hang in there I'm hoping the best for you and remember that we are all here for you.


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Nicole I can understand you sadness and fear/frustration.. but please know that you are not alone in this.. and that we here on the forum do understand what you are going thru..

I have been told many times by many different specialist in pots and in various medical docs that I have a very severe case of pots..the worst taht they have ever seen.. and some mysterious things going on.. that have yet to be figured out yet...

sometmes I cry.. sometime I get angry..sometimes I ask god why are you doing this to me??.. then i wonder what purpose that my life is going to serve living in such a messed up body... but once i get over the "shock" so to speak.. Irealize that however bad it may be now or get in the future.. that right now at this moment.. this is the moment that I have to live in.. I have to live my life right now at t his moment to the best of my ability..and take small steps at times to gain something back that I have lost..

I grieve when I loose something or someone in my life b/c of pots.. and miraculously something else comes along to fill that "void" of what I have lost b/c of being sick.. and sometimes it is a better version of waht i lost or something new alltogether..

I have gained tremendous support for people on this forum.. and have made some good freinds thru here as well..

so hang on Nicole.. I know it is so very hard.. you go thru your grieving process cry scream be angry.. but know that something will come along one day that will put a smile on your face and bring some joy and happiness..weather it is faith in god.. new found friendships.. a surpirse in the mail.. a call from an old freind or someone that you havent spoekne with in along time..maybe even treatment that will help you even alittle bit .... something will come along to brighten the storm clouds away..

and when you are in the potsy hole.. know that somebody is probably down ther with you.. and when there are feeing better maybe they will pull you up along with them out of the potsy hole..once I can finally pull my way out.. I'll be there to help!! or if i'm donw here with you.. I'll cry with you or curse this potsy body to h@#l and back right along with you!!

hang in there dear! I know its devastation blow to the mind body and spirit..but hang on!!

love and hugs


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Sorry you had such a tough day!! Right now you are trying to adjust to your life and you are holding out hope (which is great and we all have to do that). It's a really tough balance sometimes.

Try not to fear the future too much; you never know when something will come along to help you feel better.

It's taken me a long time to wrestle with illness in my life but I also want to say that even though in the moment you may feel your dreams have been dashed it doesn't mean you have no future. You will have to create different dreams and goals for yourself.

Allow yourself to feel your feelings, grieve your losses but then focus on what you can do and how you can rearrange your environment around you to best support you.

Chronic illness really does bring a unique component with it in my opinion, in that you have all these losses. At first you keep thinking you are going to get better so you don't really grieve them or even accept them. Then, you start to realize and accept that your condition really is chronic but you may still not know how to grieve some of these losses. Personally, I'm really struggling right now with the concept of how do you grieve the things (say the ability to drive for example) and honor that reality as it is in your life in that very moment and at the same time, in the other hand still hold out hope that someday things will change (in this example, that you could drive again). You know what I mean? We aren't "trained" to grieve and hold hope in the same hand. If you don't allow yourself to grieve and feel the feelings that are there then you don't honor those feelings but at the same time you don't want to say you are giving in or giving up hope.

Hope I'm making sense ----I feel I'm not expressing my thought very clearly.

Anyhow, hang in there and know that things will get better

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Sorry, Nicole. It's hard to be told these things- I was told the same thing in October 2 weeks after I started grad college, as my blood pressure began to flatline when I felt bad.

Your life isn't over- it just needs adjusting. Any dreams you have can still happen- you just need to think laterally to make them happen.

Did you know that many doctors believe POTS can just vanish? IT can just disappear in some people. I'm hoping I'm one of those people, an the people most likely to have a spontaneous recovery are those who acquired it after a virus- which I gather you did?

Pots is variable. It fluctuates. Most of us have spells where we get better, and spells where we get worse. I was riding a bike a month ago; yesterday I needed a wheelchair to get from my bed to the bathroom (and my room is ensuite!)

But like Tearose said- you just have to keep going. What else is there?

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So sorry you got such a response from the doctor. It does take a long time for most people to recover--and the worse you are by the time you finally get diagnosed, probably the longer--due to the fact that you are probably quite deconditioned. Please take "heart" (no pun intended!) in the fact that, according to that latest article by Grubb, et al, 90%+ of POTS patients get functional eventually with appropriate medications and physical therapy, and the younger you are the more likely you will recover. I also noted in the article the statement along the lines of "hope is a very powerful medicine." So I am sorry your doctor didn't express that. There is no reason I can imagine for you not to have hope. Please try not to be discouraged. Many of us have gone from being bedridden to being functional again (like me). It can take a long time and requires patience--thankfully this is not a progressive disorder--and we all can and should have hope for a better quality of life over time.

Take care,


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What a true blessing you all are. I'd be a reck without your support thats for sure, as if I'm not already.

I'm definately stuck in the grieving stage, heck I guess who wouldn't be. Its only been a few weeks since my diagnoses. I think that seeing my family in pain because of me hurts even worse than this illness itself.

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