I'm so glad to have found this site as it has already made me feel so much less alone ! I am currently putting on a bit of weight after a huge weight loss (50% of body weight). I'm underweight and aiming to get a normal BMI. Since my weight loss my physical health has declined greatly and I've been getting some very strange symptoms. Many of these I've had all my life but I think since I'm undeweight they are all affecting me a lot more.
I have what I believe are many of the POTS/dysautonomia symptoms -
inability to stand for more than a minute or so - crushing chest tightness, light headed, syncope and presyncope
lots of blood pooling - hands and feet when standing
translucent hands/fingers - if i hold them away from my body I can literally see blood draining from them - coldness
extremely intolerant to cold - can't function at all if cold
loss of facial sweating
no appetite
extremely light and noise sensitive
postural hypotension
general low blood pressure
heart rate usually low 50's rises to 115 plus standing
some syncopal episodes (standing/one sitting at desk with outstretched arms)
I've noticed that some things make my symptoms a lot worse - caffiene was definitely a trigger for the low blood pressure lightheadedness and this has eased since cutting it out completely. I try to stay well hydrated etc.
Initially I thought a lot of the symptoms were related to the weight loss but even after eating normally for four months and putting on some weight they are all still there, some have worsened. I'm waiting on results of a 24 hour ecg/blood pressure monitor and had a brain ct scan the other day. Routine blood tests have all come back normal.
I'm not sure how best to pursue it with my GP, I already feel like a hypochondriac presenting with all of these strange symptoms. My quality of life is so poor at the moment and I'm off work which is so frustrating. Are there tests that I should ask my GP to refer me for (tilt test?)? I've not mentioned pots/dysautonomia to them yet...not sure how best to approach it....
Is there anyone on the forum that could recommend a private specialist in the west of Scotland who might be able to help with a diagnosis? I don't think I could handle any more "it's just anxiety" diagnosis.
Possible Pots/dysautonomia
in Dysautonomia Discussion
Posted
Hi there
I'm so glad to have found this site as it has already made me feel so much less alone ! I am currently putting on a bit of weight after a huge weight loss (50% of body weight). I'm underweight and aiming to get a normal BMI. Since my weight loss my physical health has declined greatly and I've been getting some very strange symptoms. Many of these I've had all my life but I think since I'm undeweight they are all affecting me a lot more.
I have what I believe are many of the POTS/dysautonomia symptoms -
inability to stand for more than a minute or so - crushing chest tightness, light headed, syncope and presyncope
lots of blood pooling - hands and feet when standing
translucent hands/fingers - if i hold them away from my body I can literally see blood draining from them - coldness
extremely intolerant to cold - can't function at all if cold
loss of facial sweating
no appetite
extremely light and noise sensitive
postural hypotension
general low blood pressure
heart rate usually low 50's rises to 115 plus standing
constant fatigue
constant brain fog
stuttering/word finding difficulties
burning sensation in legs
heat intolerance - become stuttery/leg weakness
supermarkets&shops - huge trigger, presyncope, tingling head, complete brain fog/confusion
Loss of shivering
very dry eyes
constant thirst
excessive urination
IBS symptoms/constipation
tingling toes and fingers
some syncopal episodes (standing/one sitting at desk with outstretched arms)
I've noticed that some things make my symptoms a lot worse - caffiene was definitely a trigger for the low blood pressure lightheadedness and this has eased since cutting it out completely. I try to stay well hydrated etc.
Initially I thought a lot of the symptoms were related to the weight loss but even after eating normally for four months and putting on some weight they are all still there, some have worsened. I'm waiting on results of a 24 hour ecg/blood pressure monitor and had a brain ct scan the other day. Routine blood tests have all come back normal.
I'm not sure how best to pursue it with my GP, I already feel like a hypochondriac presenting with all of these strange symptoms. My quality of life is so poor at the moment and I'm off work which is so frustrating. Are there tests that I should ask my GP to refer me for (tilt test?)? I've not mentioned pots/dysautonomia to them yet...not sure how best to approach it....
Is there anyone on the forum that could recommend a private specialist in the west of Scotland who might be able to help with a diagnosis? I don't think I could handle any more "it's just anxiety" diagnosis.
Any advice would be hugely appreciated
Pam