POTS and extreme pressure in head, could I have Chiari?

[NoFluxes]

For over 3 years now I've been suffering of pots while doctor after doctor none could figure out the cause and none could find me a proper treatment. I developed the head pressure around the same time as the Dysautonomia started, and both kept on worsening with time. Here I am 3 years later and I'm near bedridden and the pressure is very extreme now that its causing horrible headaches that I cant fully relieve and I can't sleep well anymore. Sometimes I'll feel out of breathe and I'm always weak and lightheaded, nauseous and I know I have trouble swallowing (I've had this swallowing problem since the age of 12 though). Being upright is the absolute worse for me, the POTS put me at risk of fainting and drop my blood pressure and heart rate due to the blood pooling while I still have this pressure to worry about.

I currently DON'T have a regular physician or any kind of specialist besides a dysautonomia specialist who's been making me wait more than 9 months to go back... I'm only 18 years old right now but I've had both these problems since 15, my family is going through financial problems and because the fact my dad is unemployed my medical attention was pushed back all the way until recently but I'm still trying to find a doctor soon and only soon not in 1 or 2 months away when I might be possibly dead! I'd say nearly all my symptoms fit in with this condition but I have had an MRI done back when the dysautonomia/pressure first began. However the pressure was very very mild back then and would only effect my while I was standing and usually only standing still. The neurologist I was seeing told me my results looked just fine.

I wonder if I really do have Chiari Malformation why didn't it show yet 3 years ago or whatever or maybe the doctors didn't quite see it. Regardless I need a doctor now and I need to get an MRI done because I'm worried I have this and I know my risks are pretty high with having POTS and especially the intercranial pressure. I went to the ER a few days ago to get this pressure checked out and they came back with my cat scan results saying everything looked normal besides sinus blockage which I've been put on prescriptions for and it has worsened my pressure now.

The chances I have Chiari are a lot higher than having pseudotumor cerebri (PTC) but I need to get checked out regardless and I hope soon because I feel like my life is at risk right now. I should also note sometimes my heart will start pounding very hard randomly and sometimes will slow down and it feels like I'd lose my breathe until it returned to normal state. Also if I'm upright a while I begin to rash up in certain areas becoming red/pinkish and really warm too it only usually happens around my whole face but I've seen it happen near the chest and neck many times, sometimes my arms and legs as well. I hate the fact doctors make me wait for an appointment when this is an emergency to me and not to mention its been put on hold for way too long already, I thank the sweet person who told me about these conditions because it might have gotten me a lead to something and if I do have Chiari then maybe I can still improve my life and possibly get rid of the POTS if its a secondary.

Because of my poor health I've been out of school for the longest time because its too difficult for me with all the symptoms, I can't work either and I wish I could at least be on disability for some income. I want to get better so I can live a normal life like others can and there's a very special girl that I wanted to meet someday that lives states away....

[selmaS]

  HI and welcome to the Chiari forum.

I am glad u came over to the forum.....

The heart palpitations u mentioned could very well be chiari, but I would suggest u go to a cardiologist and get checked...as along with Chiari and POTS, Ehlers-danlos is another syndrome  many of us get and there are many types and one affects the heart...so, do not let this go...be sure to mention it to ur Dr and get a full work up.

   "selma"

[linnielou232]

I feel your flustration in finding the answer's.  When they didi the MRI did they actually look for Chairi.  Getting dx'd is something that has been difficult for most of us here with Chairi.  I know for me it was almost 2 yrs.
Just wanted to let you know your not alone, and I pray you will find a Dr. that can help you.  They actually have to be looking for this in order to see it.  I had Dr. look at my MRI and said thing's were find.  Keep us updated on your journey, and hope you will find answer's soon.