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1399250 tn?1436943297

Back... and I'm still worsening

I'm here to basically straight out say I need help, a way to stop myself from worsening... I'm down to a few weeks left before becoming fully bedridden probably. I try to put up with my symptoms while being upright but they are too painful, I feel way lightheaded, out of breathe, nauseous, warm, tingly, full of pressure in head, confused, out of energy, weak and more...I'm also at great risks of fainting but I'm more concerned about the symptoms because that's what truly forces me to stay lying down

Regardless, nothing helps me feel better but a lot of things do make me feel worse, I know I have a form of dysautonomia already I was diagnosed a while ago (getting diagnosed isn't the problem) I been to many doctors and the best specialist in Illinois and have tried nearly everything. Although a cause was never found for my illness, I have been on medications like florinef and midodrine, I have also tried to fight my illness by exercising but it continued to worsen with time. I am out of ideas and soon enough will be out of time, my only doctor might be ignoring me but she wasn't able to help within the 5 months I was seeing her before.    

I also understand dysautonomia doesn't kill but it does indeed weaken other systems including the immune system , if I become bedridden not only I"ll need support in general but I also need to stay healthy while being prone to catch new illnesses easier...
8 Responses
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1399250 tn?1436943297
Unfortunately my dad doesn't have the money to take me to another state to see a specialist, or even if I wanted to go to that mayo clinic I still can't even do that... Uh I made an appointment with the only other physician who "treats" dysautonomia in my state and she's making wait until February... while my other doctor is making me wait until January. I've given up on my illness already and I can't even trust these doctors making me wait.

Just wish me luck that I don't become bedridden.
Helpful - 0
875426 tn?1325528416
Well, I do get migraines, which can be a problem accompanying dysautonomia.  I think I recall you had some sinus issues in the past though?  Did they make sure those were totally cleared up?  

Have you had a mental evaluation in regards to the confusion?  Have they checked your oxygenation level in your blood?  Is your hemoglobin in normal range?  

I at times get really warm from my racing heart.  In the past, I also had some times where my knees get really hot and turn red and my feet would turn red too.  When you feel really warm, have you ever taken your temperature to see if you had the fever it felt like you did?

I think it is a smart thing to get  a referral to a center specializing in dysautonomia.  I believe Christy's suggestion is one to seriously consider.  You have to determine you want help and to not wind up an bedridden invalid if you can do anything about it.  
Helpful - 0
1399250 tn?1436943297
I am concerned about my pressure in the head issue, I need to know if this is a common problem with dysautonomia for everyone else or this is something unrelated that needs to be treated, either way being upright with the pressure gives me HORRIBLE headaches and confusion, on top of that I become really warm as if I have a fever, my doctor was going to send me to a neurologist to get it checked out but I do indeed wonder why I have this issue.
Helpful - 0
1399250 tn?1436943297
Hmmm I don't remember and I can't exactly think well anymore, she seemed to focus on my blood pressure only though, I do remember getting an EKG and ECG done though, the tests were basic ones, MRIs and cat scans were done a while back also, also regular blood tests and checking my blood pressure.

I am not wasting time on regular doctors again, if I'm going anywhere it has to be a specialist or at least one that knows of dysautonomia... Some of the cardiologists and neurologists I been to in the past told me that I was "fine" and would grow out of it with time, all those doctors have only worsened my situation so far.

I don't know for sure if it weakens the immune system, but regardless as a person I've always been one to develop diseases my whole life.
Helpful - 0
Avatar universal
My son was in bed for a very large part of everyday.  He has not been in school for most of the last 3 years, but....... We are currently at the Mayo Clinic going through the Pain Rehabilitation Clinic for teenagers.  Many of the kids here have POTS.  It is a very successful program and gives kids back their lives.  My son is doing AWESOME in this program and will return to school the day after he gets home from here.  

They teach you many ways to handle your symptoms and one is he is not allowed to talk about his symptoms.  When you think about and dwell on your symptoms, they become worse.  Your brain lights up and focuses on the pain/symptoms,etc...  Some of the kids who started this program much worse off than my son, have left here walking, being able to run and smiling and having fun.  Please look into it, it is amazing what they are doing here for these kids.
Helpful - 0
875426 tn?1325528416
Where did you read that dysautonomia weakens the immune system?  I'd never heard of that.  I believe you were the young man whose father fairly recently got medical insurance, right?  How many doctors have you seen since he was able to get it?  What tests did that best specialist in Illinois run?
Helpful - 0
1399250 tn?1436943297
Last time I checked I didn't have asthma so I probably don't, as far as fatigue I don't know really, I just know its one of the weakest symptoms compared to the pressure and others.
Helpful - 0
Avatar universal
Do you have asthma too? What is your heart rate. Maybe you also have chronic fatigue syndrome? I get really fatigued from it and I'm frustrated too :(
Helpful - 0
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