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Hutch

i thought i had won

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About me male 27 years old, diagnosed at the age of 15 with dysautonomia right  before becoming ill. I worked out daily rode bicycle couple miles after school each day, I was 6ft tall 165 pounds ripped body never no drugs ate healthy. I had spent my whole child hood sick on and off I would catch stuff so easy as a child had mono at the age of 12 half  it was super bad for me, after that when I became set on being healthy. It wasn't intell I was 14 that I felt great looked great witch was short lived.  One morning I got on the school bus next thing I know someone is waking me up saying hey man were at school. I got off the bus thinking that's weird im never tired in the mornings. Chalk off being tired for pushing my self to hard, and id go to bed early tonight. by the time I got home I recall being so exhausted, I went straight to bed fell asleep didn't get up Intel it was time for school. I work up as tired as before id went to sleep, again I get on the bus I try to stay awake, but again someone wakes me up saying hey were at school. Its at this point its starts to go down hill fast. Im falling asleep in class no matter how hard I try to keep my eyes open I stand up to change classes I feel my heart racing as I only walk to class, weird I thought. With each new day symptoms increase to the point im very flu like sick feeling when I walked it was like one leg was now longer then the other off balance sensation turning my head quickly made dizzy and head aches heat intolerance super sensitive to smell stomach acting crazy  witch all happened with in a week.

finally I feel so bad I cant stand it I ask to go to the nurses office. walking down the hall I feel off balance heart racing I get there, she checks for fever no fever. I asked can you check my pulse she trys but says its to fast to count. She asked what drugs are you on I said nothing. I end up leaving in a ambulance, get to the hospital explain all symptoms they do blood work other the a high resting heart rate, doctor says there nothing wrong, your healthy. then goes on to say depression and anxiety can make you  feel weird. I blew up. I told him will that be great if I was depressed or had anxiety but like I told your nurse, Im not depressed and don't have anxiety, I explained to him im 15 look 20 tall tan good looking and with a built body im freshman in high school, and hot girls literally were throwing the self at me. as a 15 year old male what more could you want. I explained how I was loving life intel all this started. will long story short. I go home feeling terrible I end up following up with a family doctor again more blood work adll comes make normal she says your healthy as can be. I Said then why do I feel so d*** terrible. She ask you sure its not depression or anxiety, again explain the only thing I have to be depressed about is feeling sick and having to explain to doctors im not depressed is the only thing depressing in my life. I go home and at this point am always so exhausted and just felt so sick, I didn't get out of the bed I just keep feeling worse and worse after three weeks of this, I was to the point I was so weak my mom was helping me walk to the bathroom I lost around 20 pound. one day mom helps me back to the bed. I told mom we need to talk. I went on to say at this point I believe what ever is going on with me is going to be the death of me, and that I wanted her to know that I accept that. to know I wasn't scare to die. at this point shes crying begging me to go to the hospital, I said we have been there done that  and the only thing worse then feeling this bad, is doctors not believing or looking deeper.

she does some research and we end up in a children hospital were I was emitted. Here is were I met doctor Puri a children neurology specialist. He had five students he was teaching at the time, He comes into the room and had already went over my chart. I remember him asking me to stand and follow him to the hallway of course this was a hard task at this point with as bad as I was feeling, as I get in the hallway he stands there be side me, asked how I felt, I replied I don't no what words to say to explain how bad I feel and how much worse it is standing. he then looks at his students and says if you cant look at this young man and see he's sick and needs help. YOU have no business being a doctor. He than points out how blue my lips are while standing. Then helps be back to the bed and notes how color returns to my lips while lying. For the next three weeks it was like being on the tv show house, I had every test you could think of done, his students would come say I think you have this or that would like more test to rule it out. one of them was sure it was a rare tumor but test ruled it out. long story short after all things were checked. Doctor Puri diagnosed with dysautonomia witch he explains I have server orthostatic intolerance when standing. along with all my other symptoms he suspected it from day one but he explain before he would diagnose some one with this the proper thing is to eliminate everything else it could be. He also said he sees it a lot in young, adults who suffered a bad virius such as mono, witch believes that what caused this. From here over the course of the next week, Doctor Puri try's me on a couple of different medication's all of witch I had server reactions to. One was such a server reaction witch had doctors running around screaming at one another to get a doctor Puri on the phone it was liquid Dilantin that caused the scare. He notes that im highly sensitive to meds and have all side effects that may happened with a  giving medicine. He told me with this being the case. There's no medical treatment help, and with exercise and time I would see improvement or even a chance I could make a full recovery. only time could answer this and he wanted me to follow up with him every 6 months at his personal office for he could track my progress. I was discharged and sent home. There is  another 12 years worth of this story  of my life with dysautonomia. I wish I knew then what i know now. ( Im a terrible speller and this is probably a nightmare to read. with poor punctuation so im going stop here). If people want to hear the rest of my life story. Ill make a video on YouTube. as iv had to leave so much out of what little iv told so far. i think a video i could better tell my story of my fight for a life.  if you want a video leave a comment let me know  

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I watch people make youtube videos to raise awarness of POTS, dysautonomia and i think its great that people do that. I wish there are people in my place that can do that/start a community but its hard to even find any :(

If you can also make it, i think it will make a difference too to you and others :)

I got sick when i start junior high a few years younger than you 15. Infection and puberty goes along with it/makes it worse, i dont know which.

So its really sad that i have to lost so many things. 

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I pushed my body so hard trying have a life. In fact I never told anyone around about Dysautonomia. Because it seems no one who doesn’t have it. Can’t seem to be able to wrap there head around it. My girlfriend of 7 years just learned about 8 months ago. I’m so bad now I do believe my days on earth are numbered. All the pushing threw it, working with a heart beating crazy fast all the time.  Being so exhausted everyday couldn’t stay awake if I set down and just keep pushing threw. I’d be willing to bet I pushed my self harder than most anyone with Dysautonomia. The worse I felt the harder I pushed. I’n turns out my body seems to have said enough is enough,  my body crashed. I’m now worse then I’ve ever been, my heart playing a big row in that, have a heart monitor on right now, going see a specialist 5 next month but I’m having so many other crazy symptoms that I feel it’s all Dysautonomia related. But he feels heart could cause a lot of them. The worst new symptom I have is the feeling like I’m smothering for some d*** reason. I just ignore it but boy is it  a crapy feeling, 

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I have the smothering feeling too....and I live in louisville ky too...so if you want to get together some time let me know....it is very very hard to deal with...I too had mono when I was 13.....I wonder if that caused this or something else.....do you still see that first doctor that diagnosed you and if not why not ???? I was thinking of getting an appointment with him but wonder if it is worth it if he can't help me....I am already DX with this.....I don't know what to do now......yes I have had the smothering feeling too....at times...it is weird and freaky....and very unpleasant.....Private message me if you want to

 

 

 

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So sorry you are having such severe symptoms.  It sounds like you've had multiple times in your life with crashes due to severe symptoms.  This is not unusual with dysautonomia unfortunately.  You did not mention what medications have worked for you I don't think--have you been able to find anything that helps?  Does it help to increase fluids and salt, use compression hose?  IV fluids help many of us as well, especially when symptoms are severe.

Have you been tested for vitamin deficiencies?  Recent studies have linked some vitamin deficiencies to POTS, so it might be worth having that checked at least to rule it out.

Glad you will be seeing a specialist.  Let us know how you are doing.

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