Author Topic: Dysautonomia and Boat Ride ? (autonomic disfunction)  (Read 4216 times)

irish

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Re: Dysautonomia and Boat Ride ? (autonomic disfunction)
« Reply #15 on: May 21, 2012, 09:48:35 PM »
virgie, After reading all of this I am concerned about your friend. I don't know how you met her or if you have known her for a long time. What bothers me is that she doesn't seem to listen to you and sort of takes over your life.

When I read about going to an island alone I became immediately suspicious. I guess I would not want to go alone to an island that is isolated---especially when I am under the weather with an autoimmune disease that causes my health status to degrade rapidly in heat, humidity, stress, motion sickness.  It does read like a mystery. Makes me very, very leary.

All I can say now is that I am extremely glad that you have cancelled the whole thing. You most likely saved yourself a lot of pain and misery. I am afraid that this trip would have placed your life in danger for several reasons.

It is no fun to have to curtail the fun things in life, however, it is wonderful just knowing that you are able to pick and choose the events that you know you can tolerate. It is hard to be content with our lot in life, but if we can do this one thing it sometimes opens up other doors for us. Good luck. Irish

Virgi

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Re: Dysautonomia and Boat Ride ? (autonomic disfunction)
« Reply #16 on: May 22, 2012, 09:56:44 AM »
Hello Parched! Yes disatunomia really stinks -

HAve you had any side effects with Florinef ?

Virgi,

I was put on Florinef to help raise my blood pressure.  My blood pressure was running as low as 78/48.  I have had good results in raising my blood pressure.  NO side effects for me. 

Good Luck

Hello Parched ! I finally figured how to quote hahaha - Today I have the appointment with the cardiologist where I will take all exam results to him:

tilt table
stress test
holter ac
ecocardiogram

I will see if he prescribes Florinef - already googled it - Am hoping I dont get side effects !

Thanks for the info :)

I have been posting about Dysautonomia in this wonderful Forum Sjogrens World created since September last year and have gotten wonderful input !

When I thinkg way back - the low BP issue has been in my life since I was in 3rd grade, but just got diagnosed last Saturday ! So frustrating ! Mom would give me these drops to make my pressure go up (Etilefrine hydrochloride (a derivative of Etilefrine) - also remember taking Triaminic decongestant and fainting in the bathroom the next morning - I was about 7 yrs old ... Now its also SS and Fibro :S

I will finally be put on meds ! Wowwwwwwwwwwww

Virgi

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Re: Dysautonomia and Boat Ride ? (autonomic disfunction)
« Reply #17 on: May 22, 2012, 10:01:29 AM »
Hello Irish!

My friend and I met in college ... we were both very outgoing and adventurous! She married and is now divorced and wanted to visit my country and relax. Unfortunately she didnt listen ... and her priority was adventure :( and visiting a foreign exotic country. She is now making the best effort to change plans and accomodate both things:adventure and spending time with me.

I did make a big effort in trying to accomoadate my health to her plans, but it was turning into heck !! I hate it to spoil plans and have come to this point where once again my health alters life - but this is my reality and i have to accept it.

Thank you for advice :)

quietdynamics

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Re: Dysautonomia and Boat Ride ? (autonomic disfunction)
« Reply #18 on: May 22, 2012, 10:15:15 AM »

"When I thinkg way back - the low BP issue has been in my life since I was in 3rd grade, but just got diagnosed last Saturday ! So frustrating ! Mom would give me these drops to make my pressure go up (Etilefrine hydrochloride (a derivative of Etilefrine) - also remember taking Triaminic decongestant and fainting in the bathroom the next morning - I was about 7 yrs old ... Now its also SS and Fibro :S"

Wow...that would have been in the mid 80's. Your Mom must have gone through heck!!!

Wishing you well with the Cardio appt.  :)
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

irish

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Re: Dysautonomia and Boat Ride ? (autonomic disfunction)
« Reply #19 on: May 22, 2012, 10:35:08 AM »
Wow, very interesting to hear that you have had the low BP issues since she were a child. Makes you wonder just what the original cause of this issue is from. Heart issues associated with autoimmune problems or possible some undiagnosed vascular/cardiac issue. Time will tell.

Sitting down with your knees bent is probably your best place to me.

It is good to know that your friend is from your college days. Sounds like she sure didn't understand your health issues. I was leary cause so many times people make friends on the internet or just socially and the background of the "friend" can sometimes be questionable because of any long term family interactions. Hopefully your friend can find something that she will enjoy and at the same time allow you to participate without having to worry about overheating or passing out. God Bless the darn Sjogrens. I am always anxious for summer until the heat gets bad. Then I am in the house with the air conditioning. Take care. Irish ;D