Asmaa Posted July 1, 2023 Report Share Posted July 1, 2023 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 Quote Link to comment Share on other sites More sharing options...
Macho319 Posted July 2, 2023 Report Share Posted July 2, 2023 @Asmaa You have to keep going on. Life will always have it's ups and downs, but as long as we are alive then we have to enjoy every minute. I know it can be EXTREMELY difficult and most people don't understand us, but you have to keep trying. Listen to some good music, watch a funny movie, just zone out for a bit and think good thoughts! Always think good thoughts 🙂 Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted July 2, 2023 Report Share Posted July 2, 2023 At one time, I had really bad paresthesia too. It drove me to the ER more than once. However, this has lessened to the point where it's essentially a non-issue over time. There's hope on that end at least. You may be one to benefit from one of those brain retraining programs. It didn't cure me, but at the very least it has helped me a great deal in how I deal with a lot of it. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 3, 2023 Report Share Posted July 3, 2023 @Asmaa, I’m so sorry you are going theough this. I’ve felt despair many times. I’m not a strong person. I cry. I complain. I wish I could disappear in a puff of smoke. But somehow, every time I think I can’t go on, I manage to pick myself up and keep going. Waiting times absolutely suck. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 3, 2023 Report Share Posted July 3, 2023 @Asmaa, do you have a supportive GP? If not, it’s a good idea to start looking for one. You can ask in the Facebook group I suggested. Also, if you have any friends or acquaintances with chronic health problems, you could ask them. Having a supportive, caring GP can make a big difference, even if they can’t do much while you are waiting for specialists. Quote Link to comment Share on other sites More sharing options...
Asmaa Posted July 3, 2023 Author Report Share Posted July 3, 2023 @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. Quote Link to comment Share on other sites More sharing options...
Asmaa Posted July 3, 2023 Author Report Share Posted July 3, 2023 @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. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 3, 2023 Report Share Posted July 3, 2023 3 hours ago, Asmaa said: 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. Dont apologize, you did an awesome job! When I first became symptomatic noone ever even had heard of POTS ( they spelled it pott's disease 😂 ). I went online and typed in tachycardia and high bP and slowly but surely I found what ailed me. I printed out articles and took them to my wonderful GP. He said " looks like we know what you have but I dont know how to fix you! ". He referred me to the autonomic specialist I wanted to see and while waiting over a year I saw - and fired - 4 cardiologists of various degrees of ignorance and dismissal. When I saw the specialist he not only confirmed my diagnosis but over the years helped me find the right treatments. ( This part can get tricky because it takes a lot of trial and error ). All I can say is that you are doing exactly what you need to do right now. Hang in there, there are so many people here that were in your shoes and we all made it. So can you! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 3, 2023 Report Share Posted July 3, 2023 58 minutes ago, Pistol said: Dont apologize, you did an awesome job! When I first became symptomatic noone ever even had heard of POTS ( they spelled it pott's disease 😂 ). I went online and typed in tachycardia and high bP and slowly but surely I found what ailed me. I printed out articles and took them to my wonderful GP. He said " looks like we know what you have but I dont know how to fix you! ". He referred me to the autonomic specialist I wanted to see and while waiting over a year I saw - and fired - 4 cardiologists of various degrees of ignorance and dismissal. When I saw the specialist he not only confirmed my diagnosis but over the years helped me find the right treatments. ( This part can get tricky because it takes a lot of trial and error ). All I can say is that you are doing exactly what you need to do right now. Hang in there, there are so many people here that were in your shoes and we all made it. So can you! Off topic, but there IS a Pott disease - at work, people enter that one by mistake all the time. It’s tuberculosis of the spine, so quite different! https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjW2J-svvL_AhULFlkFHb9ECsAQFnoECBMQAw&url=https%3A%2F%2Femedicine.medscape.com%2Farticle%2F226141-overview%23%3A~%3Atext%3DPott%20disease%20usually%20results%20from%2Csubchondral%20plate%20is%20usually%20affected.&usg=AOvVaw0JWhpTwM3-IoqMdF9M1oxD&opi=89978449 Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted July 3, 2023 Report Share Posted July 3, 2023 Hang in there! It can feel so lonely BUT you are not alone, WE understand and feel your pain. We’re not going anywhere. We all help each other. Keep fighting to be heard and don’t stop until you get the attention and care you deserve! Things will get better. Quote Link to comment Share on other sites More sharing options...
Nin Posted July 4, 2023 Report Share Posted July 4, 2023 On 7/2/2023 at 12:58 AM, Asmaa said: 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 I just wanted to say I feel you. The fact you've gone back to your gp it should speed things up. Don't lose hope. It's just so unfortunate how long we have to wait, I'm in the UK and pots waiting time is awful Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted July 5, 2023 Report Share Posted July 5, 2023 How are you doing Asmaa? I wanted to share a resource which is helping me a lot! It’s called “The Insight Timer” and is available on App stores. It’s an amazing compilation of free breathing exercises, meditation, vagal nerve exercises and so much more. It’s made a real difference in my life, I hope it can help you as well! Regardless, I’m thinking of you and wishing you the best! Quote Link to comment Share on other sites More sharing options...
Macho319 Posted July 7, 2023 Report Share Posted July 7, 2023 @MaineDoug thanks for sharing this. I will definitely check this out! You guys are all great!! @Asmaa hope you're doing better. We are all rooting for you!! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 10, 2023 Report Share Posted July 10, 2023 @Asmaa, I’m glad your GP visit went well. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted July 11, 2023 Report Share Posted July 11, 2023 I agree with Macho, you are all GREAT! Everyone here makes a difference to me every day! Thank you. Together we are strong! Quote Link to comment Share on other sites More sharing options...
Asmaa Posted July 14, 2023 Author Report Share Posted July 14, 2023 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 Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 14, 2023 Report Share Posted July 14, 2023 @Asmaa, I’m afraid it can take a while to get things moving. It can take a week or two for referrals to get looked at. Take care and try not to stress too much. It sounds like things are moving in the right direction. Quote Link to comment Share on other sites More sharing options...
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