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helane
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My story is probably similar to many others...

Since I was a child I could not stand heat, strong lights, screaming around me etc. I would also regularly faint - every week - in church. :) I heard many stories - that I am weak, lazy and so on. At the certain age I realized that I am not that lazy and bad as I had thought. :P Fainting did never stop, heat and standing intolerance neither. My sensitiveness to stimuli - I realized that what is concerned "too sensitive" for modern society was a norm for thousands of years. I probably would hear an animal approaching me - my "normal" friends would not. :blink:

Anyways... in the meantime I emigrated. Fainted while copying immigration documents, cut my head really badly. My new family doctor wanting to know my life story questioned me for half an hour... and I have to admit - he was one of the best "things" that ever happened to me. Making long story short - diagnosed me with orthostatic intolerance and hypotension. At the moment I am diagnosed and that's all. Don't tolerate pills well (some allergies etc) and because of retention of fluids cannot take salt tablets either. Usually I deal fairly well but there are days and months when I simply want to give up or just get a disability so I can work when I really can. When it comes to psycho somatic part of OI - I am not depressed, neither have anxiety above the norm. In my case it seems to be mostly physical.

Well... any questions, any advice & help - please free to answer the post.

Helane.

PS. English is my second language so forgive any mistakes. Also could anyone explain to me - is postural hypotension the same as POTS? I am new to diagnosis and still a bit confused.

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Welcome Helane! Very nice to have you here. If you use the search function at the top of the page I think you might find lots of answers to your questions. I know it was very helpful to me when I was first diagnosed!

I think the term Postural Hypotension would refer to a sudden drop in Blood Pressure when standing. Postural Orthostatic Tachycardia refers to an abnormal increase in heart rate upon standing. Many of us have both, some have one some the other.

I'm very curious where you imigrated from? Your english is great! We have many members from around the world here so you should feel very at home! Glad you found us!

~Roselover

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Hello Helane,glad you joined us.Hope you find lots of helpful informations and new friends,I certainly have!

Hugs Pat

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Hi, Helane

Welcome to the board.

Fainted in the church? :huh: I can imagine it... :( I fainted in the school?s church so often that the doctor certified that I had to stay in the class while all my friends were going to the church... :P

I had other episodes of faintings... Making me understand that it was my problem and not caused by the church... :blink:

Glad that you found us! I am sure you will get excellent information from other?s experiences, support and help. (I did)

Feel free to ask, it will be a pleasure to answer :)

Love,

Tessa

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Guest tearose

Hello Helane and welcome to the family! :huh:

It is wonderful that you have a doctor who you feel support from.

I too went some time between diagnosis and finally figuring how to treat my POTS. I also get swelling from salt so my sodium intake is limited. It is a daily challenge. I do find electrolyte packets helpful and I use compression pantyhose to help me get through each day. Have you tried these? What are you doing to manage your symptoms?

I also use a seat cane so I can go out in the world and not worry what to do if I start to feel weak or dizzy.

Your english is fine!

best regards,

tearose

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I am originally from Poland.

When I read some of your stories I am happy I "only" have a postural hypotension and LBP. In the end it is just some symptoms that I can control if I can control environment, not a disease. I am quite tall so it seems to be connected with my height as well. My heart goes to all of you with much much more problems then mine.

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Welcome Helene,

Glad to see you had a good Dr. who was able to diagnose you. Hopefully with many of the self help measures listed, you can help yourself without the meds since you say you are unable to tolerate them. (me too for the most part).

How tall are you? BTW, you English is super! <_<

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Guest tearose

helene, dzien dobry! Bywam studenka v Polca!

my goodness it seems like a lifetime ago. Nie pamientam fisco....

see, your english is better than my Polish!

anyway, here you are family and we are good at figuring out how to communicate with everyone so fisco pozontku!

Dowiedziena!

tearose

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Welcome!

Just one thought to add to the previous replies...if you have been fainting since childhood, then your doctor might be able to find the cause, if it is genetic/familiar or if there is malformation detectable on an MRI x-ray. This might help you identify possible treatment routes. Many of us get it after childhood (teenage years or adulthood)...I think usually in late onset cases it follows a viral infection or accident involving whip lash action in the neck. But, for the childhood onset, (those of you who have childhood onset, plz correct me if I'm wrong), seems to me from reading pplz stories, they generally have the kind of abnormal nerve formation that is visible on an MRI scan. It could help to know how. It might not really make a difference in the end, but some ppl can get surgeries in the neck that can help.

Anyways, welcome to the forum!

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well... even if there is a cause and i can get it fixed with a surgery or two... nah, i don;t think so. had three already in my life, exhausted my limit. <_< i am happy the way i am and to be honest on some level my PH is a blessing - it makes me to slow down, so i don't run through life and miss the stops.

tearose :) you made me smile today.

your polish not so bad either. can give you some lessons if you want... by the way

gdzie studiowałaś? co? i kiedy? ;) pozdrowienia. ucałowania. h.

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Guest tearose

chiest'

studiowala Nauki Politicni i stosunki mienzianadowi, v Warszawa..nowy szwiat.

dobra nots!

Now my brain hurts! I think I will need to practice both my vocabulary and spelling!

I studied both in Wroclaw and Warsaw. What town are you from? It was an exciting time in the development of private enterprise and government change in Poland. I wonder if you were even born when I was a student there <_<

Where was your POTS diagnosed?

again, welcome,

best regards,

tearose

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Guest tearose

It truly is a small world. The same building, that is amazing!

Are you able to manage your POTS and do something during the day? Like work, or read or whatever?

I hope you will learn from here, how to get the most of your life without relapsing.

As I mentioned, I use compression pantyhose, have you tried these?

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many welcomes! and as many others have said, your english is grand. better than some for who it is their first language in fact <_<

i'm part polish - my grandfather grew up there. he was in the polish underground in world war II and had to escape to england after the war where he met my irish grandmother and where my father was born. but enough of my family history. i grew up on kielbasa & pierogi & crucziki (sorry for wrong spelling) & other polish foods & used to make pierogi & crucziki myself when i was in better health. i can't eat at all these days but pierogi would be one of the first things i'd have if that ever changed! my polish skills are limited to foods & singing (stola) but my polish heritage has been a big part of my life growing up.

so glad that you found the forum,

:) melissa

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Hi, Helane:

Welcome to the group! I'm so glad to hear that your symptoms have been pretty manageable for you. Many people on this forum have been told that their illness was psychological, but later, doctors that took the time found the physiological causes. Know that you are among friends who understand and believe you. :)

I'm afraid I don't know any Polish, so pretend I'm putting a very cool Polish sign off right here. :lol:

Deucykub

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