Asmaa

Hi @Sarah Tee @MaineDoug @Nin My GP said he will call me and connect me with the right Neurologist and order the right tests for me but i haven't heard from him for over a week. I think he has forgotten about me or doesnt know what to do. I have also emailed 2 neurologists using the original referral and they said they would get back to me with an appt date and havent heard from them as well. This has been over a week too. im calling them but it keeps going to message bank. Almost impossible to get help for this. I dont

@Sarah TeeThank you for your reply. I visited my GP today and told him about the waiting times. He was very understanding. I also showed him the results of my at home NASA test which he found interesting. He has admitted that he doesnt know much about POTS but said he will help me as much as he can. I also gave him a list of useful blood and urine tests he can request for me. He took copies of the list and said he will research and call me back with the referral. Hope he can help me. I felt uncomfortable telling the doctor what I needed and apologised for it, but i explained that I am desperate and the quality of my life has been destroyed. And there is so little understanding of this illness that I need to take control of my health to get better.

@MTRJ75 Thank you for giving me some hope about the paraesthesia. I was afraid it would never go away. I agree that I need to find a way of coping a little better.

My Symtpoms continue to get worse and more scary. I've gone from feeling tired, dizzy and nauseous to having scary out of body experiences. Last night my paresthesia got so bad that I felt I had all these insects crawling over me I thought I was losing my mind. I've been getting body trembling, extreme anxiety, feelings like I'm losing my mind, my heart pounds, my arms feel weak and its like my body is trying to jump out of my skin. I don't know how much longer I can take this. I really think that I'm either going to end up with a mental health crisis or my body is just going to shut down and die. I just want to escape this nightmare and I dont know how. The medical system expects someone to wait months for an appointment but what does a person do in a crisis? Ive been patient for a year waiting for things to improve but its getting worse and worse. I cant take this anymore

@Sarah Tee why is Blood Volume Testing and Transcranial Dopple2t Tests important?

@MomtoGiuliana thanks for your reply. I guess i want to make sure i dont have hyperadrenergic POTS. I had previously been taking Zoloft for the last 5 years and in January this year there was no more of it in the country. I tried the generic and after 1 week my heart rate hit the roof. So I stopped and waited about 3 months before I could get Zoloft again. After my first dose the heart palpitations were strong so i stopped and ive been too scared to take it since. But i really need it because i havent been coping well. I thought maybe i have hyperadrenagic POTS because SSRI have some norephinephrine activity which was making it worse. Im in a situation where im too anxious to take an anti anxiety medication. Isnt that crazy?

Hi everyone, I just did the CDC at home test measuring Blood pressure and heart rate. I think I may have POTS. Can anyone help me interpret the results? 5 mins lying down: BP 96/57 HR 72 1 min standing up: BP 98/68 HR 101 3 min standing up: BP 96/66 HR 98 5 min standing up: BP 98/67 HR 104 7 min standing up: BP 101/66 HR 102 My heart rate did increase by > 30bpm at some points and my blood pressure diastolic reading increased by >10. Would the increase in diastolic mean I have hyperadregenic POTS. Any feedback would be much appreciated. Regards Asma

To have a diagnosis of POTS does the heart rate need to go up significantly each time a person stands up? Or can there be times when the heart rate doesnt go up and times that it does when in an upright position?

@MaineDoug Thank you so much for your feedback. Its really great to read about people getting better. My suspected POTS/dysautonmia started a few months after I got Covid. I seemed fine and then i just crashed. I got very bad GI symtpoms and neuro symptoms and racing heart and palpitations. Im currently looking for a good neurologist in Sydney. Ill keep you updated. Regards Asma

Thanks Sarah, My weightloss is due to me not being able to eat so many foods or large meals. Large meals and plenty of foods seem to make things worse. I eat mostly protein and vegies and fruit. I ordered a BP machine. I know i have some sort of dysautonomia but probably not POTS. My heart rate is extremely random not just on standing up. Like right now i am sitting in bed and its over 100bpm. Ill join the facbook group you suggested. Can we stay in contact? It would be nice to have contact with someone who understands.

Thank you both Pistol and Sarah for replying. I plan on purchasing a BP machine. I live in Sydney Australia. I contacted Dr Judith Spies room but was told she only accepts referrals from a specialist and not a GP and the wait is 12 months. Any recommendations?

Hi Everyone, I'm pretty sure I have Dysautonomia. And I cant get help from doctors. Can someone please help me make sense of my symptoms? Had symptoms for last 11 months 43 year old female. - Heart rate increase when standing - sometimes my heart rate is fast even when I am lying down. It can happen randomly throughout the week -dizziness and nausea -loss of sensation in fingers, hands and arms -increased anxiety and agitation -I have very low blood pressure when sitting but it goes up when I stand. - increase heart rate after eating/ weight loss -wrinkled fingers -extremely loud tinnitus This is destroying my life. I suspect may have Dysautonomia or POTS but I dont know which type. Can anyone please give me some insight? Please help - Asma