Meemee

Hi again, so sorry to keep on posting, this is all just very new to me so I end up having lots of questions! I'm having a very hard time at the moment, which sadly I'm sure you're all far too familiar with. Every day I seem to be getting worse, I feel weaker and weaker and have become so slow and tired. Its making me feel like I just want to give up, every day is so hard. Its coming up to exams at university so I have to try and get myself to my lectures but I'm so mentally drained also with the worst brain fog! After all the tests I've had done its seeming less likely that they are going to find the cause of my autonomic dysfunction. Sorry if it sounds like I'm just complaining, I just wanted to know how to cope with all of this? You all have already been so helpful and I'm really grateful for this forum; it has made this problem in my life far easier to deal with. ❤️

Thank you for your response, I definitely need to improve my diet! I'm glad to hear it is treatable

Thank you so much for your message, I feel much better I'll try not to worry, I'm so glad you have found something that works for you xxx

Hi again! I have just seen a neurologist yesterday who suspects that I have a case of autonomic neuropathy. I am waiting to undergo some tests to confirm this. This has scared me a bit because I have heard that this condition isn't very treatable, especially if the underlying cause isn't found... I was wondering if anyone could reassure me; do you know of any effective treatment for autonomic neuropathy, or will I just have to grin and bear this for the rest of my life? Its having a really negative effect on my life already, and I'm just starting uni 😕 Any response would be really appreciated! Many thanks xxxx

No, but my doctor suspects it, just awaiting some tests now xx

Can't afford a blood pressure cuff at the moment sadly 😕

Hoping it wont get too hot where you are!

Sorry to hear you had such a disconcerting experience with the palpitations and such! Thank you for your comment, its nice to know I'm not alone

Thank you so much for this, I feel much better! Hope you are coping well

Im sorry to hear it is affecting you so much 😕 hoping you find a more permanent solution soon xx

I love the sound of cooling towels! Thank you for your help xx

Thanks for the advice, you have been very helpful xx

Same!

Hi again! Sorry to ask another question, its just I only get to see my doctor once every month and I keep on getting so many symptoms due to my POTs! I have found that at around 7pm every day I get incredibly tired and lethargic, and struggle to concentrate. I notice that when this happens my pulse is quite weak, when usually it is quite strong. My blood pressure varies often I was wondering if this is normal? I worry about how my pulse strength varies so much, so if anyone else suffers with this too please let me know! It would be hugely reassuring. Many thanks, I hope you are all well xxxx

I suspect I have hyper-POTs also, its awful isn't it! Seems I have many of the same symptoms as you 😕 I hope you find a good way to cope with this, good luck!

Thanks for your response, you have been very helpful! I will make sure I give that a go, best wishes

It must be, good luck with your surgery!

Yes I really struggle when I cook dinner too!

Keeping a log is a good idea! I hear that the inability to sweat is not very treatable so a bit worried about that... many thanks!

Ill suggest that to my doctor the next time I see him! Thank you

Im glad to hear you're not really struggling with this anymore hopefully that will be the case for me! Did you ever find that attempting to heat up then suddenly made you too hot?

Thanks for your response! I have another appointment in two weeks, so hopefully he can help me then sorry to hear that you are struggling with this issue too, I will give cooling my feet a go!

Hi! I have exactly these symptoms too! I understand how scary it is, just keep on persevering with the doctors until you find one that can give you a proper diagnosis and treatment plan. It seems impossible to find one but hang in there, you can do this

Hi! I am an 18 year old female that has recently been diagnosed with POTs. I am really struggling with a lot of the symptoms, but the one that is actually effecting me the most is temperature regulation. When I am outside i am freezing and my whole body is cold, but when I try and warm up my body overheats and stays that was for hours even when I try to cool down again. I just tried to warm up after being outside by putting a water bottle to my head, but now my entire head is burning up and my face is bright red, and I cant cool down. It has been an hour since. I also struggle to sweat. I am really scared at the thought of my body temperature fluctuating to dangerous levels. I was wondering if anyone else is experiencing this, and also how they deal with it? Is there any medication that can help? Can I come to any harm from overheating easily? Any help or advice will be greatly appreciated, as I am really terrified at the moment from this illness. Thank you!!

Hi! Not sure if this is the right forum to post on as I am new here! I am an 18 year old female that has recently been diagnosed with POTs. I am really struggling with a lot of the symptoms, but the one that is actually effecting me the most is temperature regulation. When I am outside i am freezing and my whole body is cold, but when I try and warm up my body overheats and stays that was for hours even when I try to cool down again. I just tried to warm up after being outside by putting a water bottle to my head, but now my entire head is burning up and my face is bright red, and I cant cool down. It has been an hour since. I also struggle to sweat. I am really scared at the thought of my body temperature fluctuating to dangerous levels. I was wondering if anyone else is experiencing this, and also how they deal with it? Is there any medication that can help? Can I come to any harm from overheating easily? Any help or advice will be greatly appreciated, as I am really terrified at the moment from this illness. Thank you!! p.s just realized that this is the wrong forum, not sure how to fix this so hope you dont mind!