Dysautonomia (Autonomic Dysfunction) Community
Bad news...been feeling worse and new symptoms
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Bad news...been feeling worse and new symptoms

I'm sorry to let you guys down but I never ended up getting any help because I'm in no condition to either, I wanted to visit a specialist in chicago but I won't be able to make it in this condition anymore, day by day I been getting worse, I really wish I could've gotten the info and professional help when I wasn't feeling as sick as I am now.

I been having new symptoms with the ones I already been having before I'll list them all now if I can remember: lightheadedness, fatigue, fullness in the head, tingling in the head and back, confusion (brain fog), ringing in the ears, increased heart rate, obviously low blood pressure, shortness of breathe. I also been feeling very warm lately and sweating a little bit, I get sore easily and my feet turn purplish when I stand up...

Things have been really getting worse for me I just don't wanna end up bedridden or dead because of some unknown cause, I know normally you guys would recommend seeing a doctor but I really am sure I can't get to one now these symptoms are just that bad, I also don't want to wait it out though because it could worsen it.

Oh yeah..yesterday was my birthday lol wasn't the best day but just letting you guys know (17 now).
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18 Comments Post a Comment
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Hello,
I feel very bad for you :(  

Happy Belated birthday :)  I can relate to not feeling well enough to even try to get help.  It takes perseverance and alot of work and feeling the way we do, it's overwhelming to think about tackling it.  I just wanted to let you know I understand.  Take a little break, catch your breath and don't give up hope :)
Stephanie
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Oh dear... I'm sorry to hear things are that bad...

Is there no way you could maybe have someone take you to a doctor if you can't get there yourself?
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Happy late bday!

I am so sorry ur feeling so bad. I understand being too sick to go.to drs. I go.through that and get even sicker just thinking about it. When I do my husband has to take me or I just couldnt go.
Do u still live with your parents? If so will they take u? I wish I could think of a solution as I truly know how it feels.:(
Also maybe a friend would go with u. U need support.
Beema
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Sorry to hear you are feeling worse. Also want to wish you a happy 17th birthday with wishes that things turn in a better direction for you this year.  

There are some things that could help you get to an appt so you can get evaluated.  
You want to keep your BP up and your energy expenditure down.  Staying well hydrated can help and drinking a pint of water can rainse your BP in 30 minutes.  Taking water with you when you go out is very important.  You need to drink water frequently.

If you are feeling totally washed out and unable to ambulate then you might need a relative to check out renting an inexpensive wheelchair for temporary transport.  There may be someone who has an old one that isn't used anymore as well.  The idea would be for it to be portable and lightweight.  You may only need to use it until you are feeling better.  This would allow less energy expenditure on the trip to the doctor.

Another idea is to ride to the appt. with a relative and either have your legs elevated on the ride or lay down in the back seat for transport.  You would need to get up slowly and have the car parked near the entrance then once inside elevate your feet again. Some people find using a cane temporarily can help with balance.  Remember these aids may only be needed for a short time if you get help and get on a regimen that works for you.    

I remember previously members of the forum gave you the telephone number of someone on another forum who is a good resource.  This person was listed as  very understanding and knowledgeable.  My hope would be that given this you will reach out for help from someone who knows of more resources. You deserve that help and support and just need to have faith and take that step.  We all need to ask for advice and help at times in our lives.  I am hopeful you will do just that.

I am hopeful you can get to a doctor by using some of the above methods.  You also need to let your doctor know you are feeling depressed.  Depression can make it harder to follow through with things.  Simple things can seem insurmountable.  A doctor will not
prescribe without seeing you however so you must work out a way to get to one without a huge expenditure in energy.

Let us know how it all goes.  Marie
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Well getting a ride to there isn't the problem really, also Its not like if I get to the specialist they're gonna pop a magic pill in me and I'm gonna be cured lol. I know I still should see one but it could take much more time just to find a decent treatment it's like I'll be their test dummy trying multiple medications. There are many tests though I never got done and it is a possibility they could find the cause if there is one.

But yeah I'm not ready to go out again I'll have to hope with time I improve, 1 year ago when I went it was a lot easier but the doctor I went to sucked so I didn't get the help I needed.
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So sorry you have to deal with this :-(
I live in Florida and was getting sicker and sicker and had an appointment at the main Mayo Clinic in MN and had to reschedule it because I ended up in the hospital for a month due to a bad medication response. I then had to suck it up and have someone, the same someone who already was paying for my trip in the first place, take me because one of the meds they used to counter the medication reaction made it unsafe for me to travel alone at 35.  
Why is this important? Because I "know" that had I kept doctoring with the 8 doctors here in FL (not to mention the ones who saw me in the hospital) I would have died, I was so mismanaged and over medicated (with the medications making things worse mind you) that I was rolled into the Mayo (I was able to walk until I went into the hospital) and could not finish a sentence without forgetting what I was saying or repeating the same thing over and over like a stuck music.
I did not know how I was going to fly across the country, and then do long days when I couldn't even do basic things a 10 year old could do. I just did it.
Chicago is not that far from the main Mayo clinic and they look at you as a whole, and I did not get a "magic pill" but I got better, knowing what was really wrong was empowering.  Knowing that I was in some of the best hands in the medical world helped, knowing I was not dieing did me more mental good then I can even say and finally I got better because I had some basic instructions.
The best (and hardest) advice I got was sit up, don't lay down...it makes you feel better but makes you WORSE and get a home PT to help you do some exercise, wear the darn hot uncomfortable compression hose and increase your sodium LOTS.
I am not saying this is what you need to do as we all are different EXCEPT we don't often get better doing nothing  but get worse as it sounds it happening with you.
(I know you must be thinking this lady does not understand how bad I feel and your right but I know how bad I was and thought it would be easier to just die but I am a mother, just as your life is just beginning we have to LIVE)
I wish there was a magic pill but I haven't found it and we don't have a one size fixes most issue but we can and do get better (and sometimes we get better and worse at different times)
Don't give up and consider talking to your parents about seeing if you can be seen at the Mayo Clinic, they don't treat you like a test dummy.
Take care!
KAV

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A lot of us haven't had extensive testing.  Unfortunately quite a few people here have gone through this looking for a diagnoses and taking a long time to get one.  One thing I have learned from this forum is if you look for what has worked for others you often find a path at least that points the way to treatments that can work for you too.  

I wish there were a magic pill.  I think for a few there have been something similar.  I heard of two women so far who had conditions that when rectified lost the autonomic dysfunction.  One person too had a complete blood transfusion for a specific problem and  was cured.  Those are rare but for sure extensive autonomic testing can explain more about why each of us have arrived at this point and point to treatment.

Most of us don't live next door to an autonomic testing center and even if we did it is a huge expense.  If insurance is a problem or being under insured there are trials at the NIH you might qualify to be in and they pay for transportation and testing.  I think being underage you would need signed consent.  

I think we have all experienced going to doctors that were less then helpful.  It happened to me about three weeks ago for a side effect I am having with swallowing.  I had to research more and find a doctor who could be helpful.  I saw a new one this past week and she exceeded expectations. So I would encourage you to ask others about doctors in your area and research them on the web and make your decision that way.

I hope you feel better and are up to going out sometime in the future.  Marie
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Looks like I'm on my own now, I have no support at all anymore, every time I mention I need to see a specialist and that I'm getting worse my dad or whoever else in my family doesn't take it seriously enough. Might not be able to do anything on my own though...
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I'm so sorry you're not getting any support or help at home.  Is there someone at school you can talk to about it and get some help there?  Hang in there :)
Stephanie
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School? Maybe 2 years ago when I was still going, I dropped out long ago because I was unable to go in this condition, even lost homeschooling due to bad doctors.
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Again I think the resource you were given in your last post, the woman on dinet, would be a place to start.  She might know of some options in your area.  Your legal right is to get schooling as well.

To get help you need to reach out.  We can give you pointers but you have to pick up the telephone and make the call.  I understand you are feeling down.  You deserve help tho and someone to talk to.

There are some videos on POTS available on line others have mentioned.  I think they are designed to show what this is like that might be helpful to show to your family.  It might help them understand better. Often times it is not that people don't care but they don't understand the extent of the problem and how it effects you.  Often times their take on it makes them think that urging you to just snap out of it is somehow pushing you in the right direction.  They see it as support.  They need more education.  Once they do understand and you find a way to a good doctor more will fall into place.  One step at at time.  Find one thing you can do to improve you condition and try that step. If you try to look at it all at once it can be overwhelming.  Pick out a smaller goal for yourself and try for that one.   Marie
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Did you look at the youtube channels I told you about that feature other young people with POTS?  If so, maybe you could pick a few of those videos to show your parents to help them understand better?

I hear your frustration and I would likely feel many of the same emotions if I were in your shoes.  I'm having a hard time of thinking of ways to get you past this impasse without you having to take action yourself, though, impossible or pointless as that may seem to you at the moment.  If you think it would help to have your parents talk directly to someone who knows more about this, maybe you could consider calling the number at DYNA and asking for a number of an understanding adult that might be able to help your parents understand better what you are going through and what your needs are right now.  

Do you have a printer attached to your computer?  If so, we could work on digging up the threads here on MedHelp that talk about other teens with dysautonomia and maybe you could print out some of those to show your parents to see how much it has helped them to go to specialists who understand this stuff, and how serious it is taken once they get to a knowledgeable doctor.  Have you printed out anything on dysautonomia for your parents to read to help them try to understand (or sent them links if they use the internet)?  
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   Sorry you are feeling so down..But rightfully so!
Please keep your chin up and positive thoughts and Faith will bring you through this :)
Sometimes our lives seem so bleak and symptoms unending like the plague this I know!

  I will agree w/ Marie that Dinet is a good avenue as well as You Tube.
take Care. Thoughts and prayers are w/ you.

~Tonya
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I don't need any support groups to be helping me, I'm fine...well not really but I realize my problems and I don't ignore them. I'm trying to get an appointment made with a specialist nearby still, I'm getting a lot worse though so the longer it takes the harder its gonna be later to get help.
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I am glad you are still trying to get the appt. with the specialist.  Having someone close by that understands and can help will be invaluable.

I hope that comes through soon for you.  Marie
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I signed up for the group everyone is talking about and I realize my problems and I don't ignore them.  The support group isn't there for people who are depressed wanting to complain about their problems.  It's a way for you to talk to people your age that are going through the same problems you are.  It's a way to talk to people that understand what you are going through (which is seems like the people in your life don't understand so it might be nice).  Also, do you have any friends whose parents you know that would be willing to drive you to the appointment, if your parents aren't?
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What friends? And my dad probably will be able to drive me there yeah but its gonna take some convincing.
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I know young people who because of inability to be mobile do most of their communicating by computer.  They have a wide variety of friends on line and this is their main connection with them.  The internet can instantly connect you with others going through similar things.  They have also gradually learned of groups to connect with in their areas but that didn't come first.

patient 915 has joined a group that helps her connect with others their age group who understand what they are going through.  This is invaluable.  Being understood, hearing about things that work for them and how they deal with life is just a goldmine and will be helpful and take away  feelings of isolation.  IT is nice too to have friends on line.

I myself have a fairly uncommon diagnoses.  There is no one near me with it and I don't get out much.  I so much appreciate having friends here on the forum  I can talk to an get ideas from as well.  I hope that you can experience similar.

I am glad you think you will be able to get your Dad to drive you.  Again the video may help him understand better.  I will hope that appt. comes through soon for you as it is a great first step.  Marie  
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