Heartbroken

Thanks for your reply CallieAndToby22.

Thanks WinterSown. Yes I do have sensory overload and I have tried many different techniques with no success.

Unfortunately, I am super intolerant to all meds affecting (central nervous system). Thank you though.

Struggling in the same boat. I am sorry I have no clue. Hugs to you and your daughter.

No, I always use the wheel chair service like you.

In my case, it is a combination of things, such as lights, noises, overcrowd and others. 

Hi all, 

I know that most of us if not all of us experience brain fog, as it is part of Dysautonomia, but I just wonder how do you all react to travelling through different altitudes especially by air? I get the worst brain fog where my brain will not process information appropriately.

I get (Temporary disturbed cognitive functions). My memory will betray me on the simplest things.

I am a complete mess at airports. No wonder if I look suspicious🙄

Thanks Pistol. 

Are we allowed to print it out and distribute it among our PCP team (Case managers and others)? the registered nurse with my PCP is about getting on my last nerve. She knows nothing about Dysautonomia and always tries to imply that my symptoms are only from anxiety. 

I agree with Pistol on the 3 factors. I usually use lukewarm water not hot water. It helps a little.

Scout, sorry to hear that. I am in the same boat. I have CFS along with POTS. How is your Thyroid? 

OK dear, take your time. Thanks

Dear Pistol,

Due to my insurance and financial situation I don't have much options. Both of my PCP and cardiologist are old school and both about to be retired, they are both in the same medical facility (Also the ER and the case manager). I somehow convinced my PCP to refer me to Vanderbilt for follow up (because I was seen there in the past), but my health insurance did not approve it (I called them and tried to convince them, they said NO with an aggressive voice. 

Do I have an assertive personality that could go with me? no, I have nobody, I always go a lone to Dr.'s appointments.  The last time my cardiologist told me I look good! Also he never told me verbally but he wrote in one of my reports that I have (Autonomic dysreflexia) (I read that at home, I can view my medical reports online. I was scared and called my PCP and told him that I am aware of having (Autonomic dysfunction) but not (Autonomic dysreflexia); He said so what? they are the same!. The same???? is this a mind game or he is out of his mind? I said nothing because I was shocked. It is true that I have had some neck and spine injury in the past but no Dr. had diagnosed me with that despite CT scan and MRI.

I am thinking of writing a detailed letter explaining all my untreated chronic conditions but I don't want to send it to my PCP neither to the case manager (She is not my case manager, she is all patients case manager). 

Should I send my letter to my health insurance or to whom? 

Thanks

Thanks p8d for the suggestions. I am already a member of my state's Facebook group. Unfortunately no medical college near me. I am very helpless. 

p8d,

I am glad you have found a good PCP. 

Both of my PCP and case manager are clueless about Dysautonomia. They both heard it for the 1st time from me, they asked me to repeat it couple times. I really need to be taken more seriously. I am tired of switching and changing doctors.  

No he doesn't, once he saw those words, all he did he got rid of me and now I am with the new provider who is worse than him, I asked him to refer me to Vanderbuilt but he refused. No I am not thinking of disability because I need one more year to get retired. 

I definitely agree with you, but those few words scared my Primary physician, He switched me right a way to another provider.

One of my reports from Vanderbilt says: (Medically complex challenging patient). Anyone else? 

Thanks Pistol. 

I am excluded due to Hypothyroidism. 

I haven't decided yet, but I am thinking about it to volunteer. 

Anybody know about an active clinical trials about POTS?

Thanks.

I am sixty and getting worse.

Thank you gackedo and Pistol for both of you.  It is so hard to have this invisible debilitating illness.

Thank you guys for your replies, I really appreciate it. 

Pistol, My Vitamin D and thyroid with Synthroid last week were normal. No clue about ferritin and Vitamin B12. I will ask my Dr. next time.

yogini, good point. You may be right because I still feel the forceful ponding sensation with every heartbeat although it runs in the fifties and forties. Also my BP spikes up at times (most of the time is  88/49 but sometimes 16/110).

I was diagnosed with hyperadrenergic pots in Vanderbilt, I had that for decades. Now, since I have been taking Synthroid for my Hypothyroid, my symptoms have changed drastically. Bradycardia replaced Tachycardia. Low blood pressure replaced High blood pressure. Hypoglycemia has gotten worse. Zero energy replaced low energy. Mental fog, GI problems, weight gain, Migraine, heat and cold tolerance, presyncope, muscle and joint pain are much worse. It feels like I have a new strange body. 

Please help. Some people here know much more than some health care providers, especially about POTS. I apologize for my long post.

Peace and love to all.

Dear Delta,

I was on Propranolol for more than 20 years, but for some reason it lost its effect, that is why doctors switched me to Atenolol. The other thing you mentioned (taking your Propranolol first in the morning) will not work with me, because my lowest BP and HR are in the morning.

Thanks for your sincere reply.