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Help!!Want so bad to get a hold on this!!


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OK, so I have been to the ER 16 times in 3 months with all the symptoms of POTS. Finally diagnosed last week and I still can't get a hold on this. Today I was sitting at the computer and stood up and had a cramp on the left side of my chest and at the same time felt like I was going to pass out. I am ok now but I cried after this episode.Got all ready to go to the ER again but taked myself out of it. I was just there a week ago and saw Cardio on Monday. I was doing so much better today until this cramp thing and now I do still feel dizzy and out of sorts. Can someone tell me how they get through all this without running to the ER every time you feel bad????

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Hi Amy - Sorry you have been feeling so bad today and over the past 3 months. POTS is really inconvenient, but once your doctor gets your symptoms somewhat under some sort of control, trust me, you will feel a little less scared and not so much have that impending doom feeling like you are going to die. I've come to terms with POTS, realize that I probably will never be symptom free and live one day at a time. Some episodes are scarier than others, but usually by having your doctor adjusting the dosages on your meds or somestimes taking you off of a med, it will help you. I hope life gets better for you and that you can try to enjoy the holidays,even a little-just think-even though what we have stinks, there are so many people who have things alot worse and are terminally ill, whereas we may not have the best quality of life each day, but try to appreciate the small things you can accomplish right now and don't get too caught up in what you cannot do now- You cannot control what your autonomic nervous system is doing or not doing. Take care-Have a restful Sat.night Beth in NJ :)

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Sounds like you did a terrific job today with the chest pain. Pat yourself on the back. No pun intended. Becoming aware of our body sensations without letting them frighten us is a big part of this healing journey.

Sometimes for me it helps to ask the doc real specific questions like ... how many skipped beats in a row are OK before I should call for help? (In my case he told me to completely forget about the ectopic beats no matter how many. Easy for him to say ;-) Or if I am in terrible pain, how long should I wait to see if it passes. He gave me two different answers depending on if I had a fever, or not, if the pain was new etc.

As for other abnormal/normal things for us POTS people, I really love MightyMouse's four day rule. If I recall correctly she once posted that she waits four days with a new symptom before call up her primary physician.

I began a serious sitting practice (breathing meditation) a couple of months ago. I do 20 minutes in the morning, 20 at lunch and another 10 in the evening with my family as a group. What I am coming to notice is that things pass. Sharp pain down my back. Breath, Breath, Breath ... it changes, it passes ... breath, breath, breath ... hot flashes race down my arms, pulse rushes to 122 ... I notice it and let go of any "mind analysis" and return my focus on my breathing. Everything passes ... trusting that is an adventure.



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Amy--great questions. Sorry you are having such a rough time right now. I also went to the ER numerous times, so certain that something was horrifically wrong and always so surprised and disgusted to be told that I was probably anxious. ER trips are thoroughly exhausting too.

I agree with everything that has been said.

Ask your doctor under what circumstances you should go to the ER.

Be prepared for a long haul of uncomfortable and sometimes frightening symptoms before you start to get better.

Don't hesitate to call your doctor about any new symptoms you experience.

It may help to keep a written daily log of symptoms--so you don't forget to discuss all of them when you do finally see your doctor in person, and so you can track frequency and intensity of symptoms over time. Also, writing sometimes simply helps with the emotional processing of your experience.

Breathing and meditation exercises are generally beneficial. (If you want guidance, try *Spontaneous Healing* by Andrew Weil).

Be kind to yourself. You are going through something that is really hard. Of course you feel afraid or despairing at times. Allow those feelings, but also believe that you will get through this and you will get much, much better.

Take care, Katherine

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Amy ~

I don;t have much in the department of advice, but I can DEFINATELY empathize. I too am just afraid i'm going to DIE. it's the worst feeling ever. since we are both newbies, I guess knowing is the key, so we have to just try and learn as much as we can about how to take care of ourselves and handle this. Anyway, I just wanted to say I totally feel your pain. Good luck.

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