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What topics or points of interest are you interested in and would like to see addressed in detail? For example POTS and aging, a general overview of POTS etc? Please share your requests here. Thanks. 

 

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This is a certainly a loaded question because the answer always seems to depend on what I'm feeling in the moment. 

I'll start with maybe safe and proven exercise methods. 

If possible, maybe common questions about some of our worst (or most concerning symptoms) answered by experts in the field (since most of us don't have access to doctors who even understand the condition). 

Maybe also printable information about the condition that we can bring to our doctors that might explain things better than we can. 

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   I agree with the safe and proven exercise methods. I would also like to know some good POTS flare ups remedies/things to make them more tolerable.

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1 hour ago, POTSius said:

I would love to know more about less common treatments. Maybe things that work really really well but for a minority of patients.

 

Yes, good topic. IVIG helped me but it was a 6 month trial for a different diagnosis. IDK how to get it now. 

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  • 2 weeks later...
On 3/1/2021 at 5:44 PM, CallieAndToby22 said:

I can't sleep, taking lots of meds and not helping. 

Also, how do I get blood flow to the brain and retain it? 

If you don't mind I just wanted to ask with your cancer treatment did you have to be put under anaesthetic for anything? I know you have said about having seizures and was wondering if it was anything to do with anaesthetic. That's when I got really bad after a operation 

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2 hours ago, Nin said:

If you don't mind I just wanted to ask with your cancer treatment did you have to be put under anaesthetic for anything? I know you have said about having seizures and was wondering if it was anything to do with anaesthetic. That's when I got really bad after a operation 

No, I took a pill called Jakafi at a very high dose starting out, then lower dose, all in all for 3 months. But I have had problems with Brevital an anathestic, it caused seizures in me as well. Do you know why it does this? 

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No, I took a pill called Jakafi at a very high dose starting out, then lower dose, all in all for 3 months. But I have had problems with Brevital an anathestic, it caused seizures in me as well. Do you know why it does this? 

I started having seizures after a 3rd operation for some reason....I still haven't figured out why. what triggers your seizures? Do you have mcas?? 

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@PistolAny and everything Covid as a topic. Experience about people who have had it, vaccine info/reactions, mitigation strategies for the vaccine etc. I think we are all interested in this. 

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20 hours ago, Nin said:

No, I took a pill called Jakafi at a very high dose starting out, then lower dose, all in all for 3 months. But I have had problems with Brevital an anathestic, it caused seizures in me as well. Do you know why it does this? 

I started having seizures after a 3rd operation for some reason....I still haven't figured out why. what triggers your seizures? Do you have mcas?? 

Well it really got bad after cancer treatment, but basically I'm having dystonic / autonomic seizures which means I'm not getting enough cerebral blow flow or circulation in my Brain. I don't know what happened with cancer treatment but I already have a compromised immune system and it really destroyed it even more and I've never recovered. The Common Variable Immunodeficiency (CVID) runs in my family; my aunt has it so bad. 

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I've been thinking about this whenever someone bumps an older thread. Some of them are five or ten years old and populated by posters I've never seen before. My assumption is that a lot of these people have improved to the point they don't even want to think about this place anymore. 

Is it possible to seek out recovery stories from some of these people? (I'm choosing to be positive and assume that is the case in most instances.)

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