Pots diagnosis after 25years of symptoms. Does CBT h... - STARS


1,141 members433 posts

Pots diagnosis after 25years of symptoms. Does CBT help?


I'm 39 and was diagnosed with pots following tilt table test after a GP finally connected the different symptoms. Also diagnosed with hypermobility spectrum disorder. I was told as a 15 year old that my fainting/seizures where psychosomatic and this diagnosis stuck with me. I knew I wasn't making it up but just had to get on with it! My two pregnancies were very difficult and I was unable to work as I couldn't stand up. Now I have a diagnosis and started medication which is helping but the fatigue is relentless. Most of all it is hard losing that diagnosis "it's all in your head" I struggle to tell people I have POTS and struggle to allow myself to rest without feeling lazy. I would like people's thoughts on CBT. Did it help?

5 Replies

Hi. I was just looking if anyone had posted about Autonomic dysfunction/ orthostatic intolerance and I saw your post.

I have hypermobile Ehlers danlos syndrome -hEDS- and most recently debilitating autonomic dysfunction which is a comorbidity to EDS., I suffer numerous disabling symptoms and chronic fatigue.

Like you I have struggled for decades with being left to 'get on with it' because Doctors didn't recognise my symptoms, until a couple of years ago.

It is demoralising feeling you're not being believed, thankfully having a diagnosis makes a big difference to change that but I can understand the affect of being made to previously think 'its all in your head'. Unfortunately that attitude of some Doctors still goes on when they are unable to recognise complex conditions. It still angers me.

Now that you have your diagnosis you will no doubt feel the same relief that I felt. Although the symptoms are still a challenge at least we can feel validated with a diagnosis, and to have knowledge of what is going on helps us manage the condition.

CBT helps to change the way we think about things, and this can help us to view those things differently. I haven't had cbt with a therapist or in a group, but I have done various cbt workbooks for anxiety. And I also try to practice mindfulness to be living in the moment. For me, learning to accept and adjust to how I am now has helped me to better embrace the life I have now . It takes time, and it is a constant learning journey. Be kind to yourself, and know that you're not alone.

Best wishes xx

OTPOTS in reply to Tillyray

Thank you for your response, my diagnosis has somewhat made me struggle more because I still feel like it isn't real and when I rest, I feel guilty. I struggle to tell people that I have a chronic illness and the struggles it causes but I am getting better at this. I have now discussed CBT with my GP and it has been suggested that I ask my cardiologist to refer me to ACTION HEART because they have a psychologist who can provide CBT. So that is the plan. I have also this week started a low dose of propranolol which seems to be going well. Thank you for your kind words and support, it is reassuring to know I'm not the only one going through this xxx

Hi, so sorry to hear that you have gone through this.

This is my first time on this page and reading your post felt like reading my own mind so I just had to thank you for making me feel a bit more normal!

I was diagnosed with P.O.T.S and hypermobility syndrome, among a few others, 4 years ago and I was also initially told that it was all in my head. It is awful that you had to deal with that response for so long.

I really struggle to give myself the rest time I need without feeling extremely lazy and extremely guilty/ anxious about the time wasted so I completely understand where you're coming from.

It took me a long time but I am only recently starting to realise that ignoring it, or trying to live life the way I did before, is not healthy for my body or my mind so I started CBT three weeks ago. Even just going to talk through life with POTS and change my perspective has been so helpful so far, so I strongly recommend therapy of any kind but I am no expert on CBT just yet.

Good luck with the new medication and CBT. I really hope that you find the right mix that works for you!

Thank you for your reassurance that I'm not the only one who was told it was all in my head and the psychological impact this has. My medication is going well and it is not long until I see the cardiologist and hopefully referral for CBT. Please keep me posted on how your CBT goes xxx

You're definitely not alone. I know how isolating it can feel. That's brilliant about the medication. Fingers crossed and if not there are many counselling places (that practice CBT) that you can attend, who simply ask for a donation of whatever you can afford so hopefully there is somewhere like that near you. I will, you do the same! Xxx

You may also like...