Freaked Posted February 27, 2014 Report Share Posted February 27, 2014 I have pretty severe POTS, as in after a year I still can't walk much or sit with my feet on the ground for more than like half an hour, so i just can't really leave the house. I've had so many scary episodes and weird stuff since this all started, and one weird thing from before it started, that I've become quite the hypochondriac. Every now and then I'll come across a disease that seems to 'tie it all together' and start getting afraid that I'm about to have a heart attack or aneurysm and drop dead. For example at the moment it's Takayasu's Arteritis (I've had low fevers, weird vision stuff, migraines, etc) and I'm slightly afraid that my stomach pains are (not kidding) an aortic aneurysm. I used to be the complete opposite of a hypochondriac, but I'm just so sick all the time now that I'm constantly reminded about my worries. I mean I just had two skipped beats in a row and now I'm afraid to move. And the longer it goes between tests, the more I think 'but maybe it was too early to pick anything up then and it's gotten worse'. Does anyone else suffer from this? How do you not worry about your health with all these weird symptoms and unanswered questions? Quote Link to comment Share on other sites More sharing options...
Alison Posted February 27, 2014 Report Share Posted February 27, 2014 How to switch off anxieties is such a hard question to answer. Is it partly because none of your doctors has taken responsibility in sorting out your health for you - you feel that you have to do it yourself? I'm only suggesting that because that is what I fel I have to do and what I feel many if the people on this forum have to do. I'm sorry your POTS is still so severe after this length of time. Quote Link to comment Share on other sites More sharing options...
dkd Posted February 27, 2014 Report Share Posted February 27, 2014 I had the feeling also that my lower abdominal pain was an aneurysm. I had my GP order an abdominal CT and it said that my aorta was fine, so that helped me to not worry about it as much.For me, I came to the realization that all my testing was normal, so I try to act as 'normal' as I possibly can. I also quit googling symptoms. There's so much info out there that I too was worrying about a lot of different diseases.It's hard to not look for an answer, but maybe there isn't an answer??? I don't know. I've pretty much given up looking Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 27, 2014 Report Share Posted February 27, 2014 Hi Freaked,My son did not respond to the POTS medications either. After being on the medications for over a year, our cardiologist starting running other test to check for underlying problems. This is a slow process but what we all noticed is that my son's symptoms got worse after illnesses and he would not come back up to the level of functioning that he was before he got sick. Is this happening to you? Do you keep getting worse after an illness and cannot return to the level of functioning as before? If so, then you may need to see an immunologist.The other thing that might help you is to make a list of all your symptoms and then put your worst symptoms at the top of the list. Symptoms that make your life unbearable. Once you figure out this, maybe you could share it with the doctor who is in charge of your medical care. They might could figure out what specialist could help you the most. If a therpist or psychologist is first choice then move on to see another doctor. Anxiety should be left off the list completely.Being sick for a long time can cause you to feel helpless and cause anxiety. My son was sick and I was the parent watching him go through all of it. POTS affects the whole family unit not just the patient. A compassionate doctor will see through any of this nonsense, so never give up hope on finding the right doctor. You just have to keep searching to find answers. I have no desire to see my son stuck in a wheelchair for the rest of his life and neither does he. Traveling to see a doctor is hard because he tires out easily but we can't get answers if we don't try to see doctors that can possibley help. Never give up!Rachel Quote Link to comment Share on other sites More sharing options...
Freaked Posted March 1, 2014 Author Report Share Posted March 1, 2014 Thanks for the replies! Yeah Alison a lot of my anxiety does stem from the fact that I don't have a doc who knows about my condition and I can talk to easily. My specialist is good but he's the other side of the city and I only see him every few months.The symptom list is a good idea looneymoon; I might try that. Quote Link to comment Share on other sites More sharing options...
UnderwaterThing Posted March 3, 2014 Report Share Posted March 3, 2014 Freaked, I can definitely empathize. The constant chaos of this condition is mind-numbingly frustrating and difficult to navigate. I have always had anxiety but it was manageable before the POTS started. Now I am afraid of everything. I'm afraid of the future. I'm afraid to try new medications or make changes. I'm afraid I'm going to lose my job. I'm afraid I'm going to not have health insurance. I'm afraid the patience and support of my friends and family will run out. I started seeing a therapist about 6 months ago to work on coping strategies and it has been incredibly helpful. If you have access to mental health support, I really really recommend. Being able to talk to someone about it is invaluable. They might be able to give you some strategies as well. There is definitely an emotional aspect to chronic illness that I think many medical doctors underestimate and stigmatize. Quote Link to comment Share on other sites More sharing options...
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