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Posted

I have had dizziness problems when I was a toddler up to now (I am 16, male). It is usually just random times or suddenly when I get up. And I fainted and fell down a bunch of times. But this has never become really an extreme problem. I can still do very active activities most of the time.

For a few weeks these things have been happening at a pretty extreme level, less on the past year, and a little bit my whole life. But the dizziness has not been happening more or less frequently so it might not be related. There are these times when I randomly start shivering and it has nothing to do with how hot it is, and I get cutis marmorata all over my arms an hands. A couple of days ago around the beginning of the day I almost could not breathe. I was not able to walk straight and kept bumping into things, and my voice was so broken I could not talk at all. My ears had the feeling when you are on an airplane. It was so bad that I at one time thought that I needed to go to the hospital immediately. Thankfully, it started to get just a little bit better where it was on and off for a few hours, and my blood pressure was measured once and was super high. The next few hours it got better and I was laying down the rest of the day because I was extremely nauseous, but I did not through up.  Other times when I have had my blood pressure measured recently it was extremely low. 

A year ago my blood sugar was almost 500. 30 seconds later it was over 300. 30 seconds later it was normal. Every other time I had my blood sugar measured is was normal (around 90-100). I don't have diabetes. Was this a problem with the blood glucose measuring thing? I wasn't feeling bad at all.  Sometimes when my blood pressure is very low or high I am feeling perfectly fine.

I also have pretty severe speech problems. When I was really young I didn't have any problems with it but since I was like twelve it started to get worse. This video is very close to how my voice sounds: goo.gl/a6k4eW ("Faces and Voices of FD" on youtube) Over the past few weeks when this has been getting so bad I sometimes can not even talk. It is so annoying, at school I am constantly trying to make my voice sound normal, and I don't talk most of the time but I wish I could talk more.

So I think some of this kind of sounds like Familial Dysautonomia. Most situations would probably be diagnosed a lot younger though. There are at least a million other unrelated health problems that would take way too long to explain, I have a doctors appointment once every two months. I had a doctors appointment yesterday and am going to like three follow up ones in a few days. Most of these things I forgot to bring up actually. It was mostly about my blood pressure changing, and problems with growing and puberty (I look like I am ten or something).

Another thing that has been happening only in the last few weeks, I accidently closed a door on my arm and it did not hurt even a little bit.  I don't know if I am imagining this but I feel like my pain perception is a lot less than it used to be.  I was also a few times crying a lot but no tears were coming out.  But sometimes tears start coming out of my eyes randomly for no reason.

I am wondering if these type of symptoms can be explained by some other kind of dysautonomia, or some other kind of sensory and autonomic neuropathy, or is it unique to FD? Although I am Ashkenazi Jewish on both sides of my family, the main thing is that some of my other problems I didn't mention here which are probably from some kind of genetic differences but couldn't possibly be caused by this, so I am wondering if it could all be connected somehow? Is there anyone on the forum with FD who experiences these symptoms?

Posted
On ‎1‎/‎20‎/‎2018 at 2:00 PM, yusername said:

Another thing that has been happening only in the last few weeks, I accidently closed a door on my arm and it did not hurt even a little bit.  I don't know if I am imagining this but I feel like my pain perception is a lot less than it used to be.  I was also a few times crying a lot but no tears were coming out.  But sometimes tears start coming out of my eyes randomly for no reason.

 

I'm pretty sure if you had closed a door on your arm you would remember the feeling. I closed a door on a finger and it hurts a lot. So if you think you're imagining this maybe it was a dream or you have a problem with your pain management system (whatever the name is), in my opinion.

Posted
On ‎1‎/‎20‎/‎2018 at 3:53 PM, whoami said:

I'm pretty sure if you had closed a door on your arm you would remember the feeling. I closed a door on a finger and it hurts a lot. So if you think you're imagining this maybe it was a dream or you have a problem with your pain management system (whatever the name is), in my opinion.

Even right now actually, I feel like I cant feel pain that well. When I just wake up sometimes I don't think I can feel pain at all.

Posted

The blood sugar issue, lack of pain, lack of tears, and the voice issues are not normally associated with dysautonomia - at least not in any literature that I have read.  The other symptoms are consistent with dysautonomia, but could also be explained by other things too.

Posted

Most people here on this forum have POTS and/or NCS.  FD is also a form of dsyautonomia but there are other organizations and doctors that would have more information than on this site. You might want to google and reach out to them.  You could have more than one medical condition (not unusual for people with dysautonomia) and a doctor can best help you sort it out.

Posted

I can relate to some of your symptoms but not all of them. I have hyperadrenergic POTS and my BP fluctuates between high and low. I also have the problems with tears (dry or abundant), dizziness, nausea off and on, breathing problems, balance disturbances. The other problems you describe I do not have. But everyone is different. Hve you been evaluated for Dysautonomia? 

Posted

You indicated you forgot to tell the doctor some symptoms. I can relate! I sometimes leave the doctor’s office thinking “Darn it! I forgot to tell the doctor about that important symptom or event!”

My suggestion would be for you to:

1. Write down the most important symptoms before the appt and take the written list with you to the appointment. Just say “I was afraid of forgetting something important so I wrote it down.” I’ve never had a doctor object to me doing this. 

2. Take someone with you, such as a parent or other trusted adult relative, to be your eyes and ears. It can be hard to remember every little thing the doctor or nurse says. It helps to have a responsible, trusted person with you whose job it is to LISTEN and help you recall the tons of advice/instructions you can get hurled at you in five minutes with a doctor. My husband is a very smart man and he has me accompany him to certain medical appointments to be his extra set of eyes and ears. It can be a wise thing to do.

As far as dysautonomia, all I can tell you is that both I and a niece definitely have been diagnosed with it. Another relative is suspected of possibly having it. Don’t know if that makes it “familial” per se. I’ve had my symptoms for 17 years and for myself I can say that my symptoms do evolve very gradually as time passes. 

Hope that helps. 

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