Chiari Malformation Community
I'm back after a year. Flustered.
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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I'm back after a year. Flustered.

I have been off this site for almost a year now. My doctors thought most of my problems were being caused by my Meniere's Disease, because the NS said my Chiari was "too minor" to be causeing anything.
They have me on Diamox and Lasex which has helped a lot with the vertigo and motion sickness for a long time, but now I'm starting to get worse. I'm getting multible headaches throughout the day and I get the light headed feeling every time I bend over, stretch or even just move my head too quickly.

I thought I would be a loving sister and help my baby sister move from her third floor apartment. I could barely get the dresser out the door and it took us close to 40 minutes to get the dresser down the two flights of stairs, because I had to sit down multiple times to keep myself from passing out and/or vomitting. This was weird because I'm in pretty good shape.

I cant read for very long or work on puzzles with my sister without getting headaches which I guess are coming from the way I hold my neck maybe? I dunno.

My vision goes in and out now. Sometimes I can see perfectly fine without my glasses and other time my vision is so bad that my glasses wont even help...

I'm even getting sick in the shower. I don't know if it's the way I'm holding my neck or the heat in the bathroom, but it make me light headed and sick to my stomach to the point where I have to sit on the floor to finish the shower!

Can heat and humidity make a Chiarian feel worse then others?
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620923_tn?1393294254

Hi and welcome Back!!

It is very possible u have related issues to chiari like POTS....and symptoms can be made worse with strain such as trying to lift furniture.( a BIG NONO!)
While the hallmark of POTS is an excessive heart rate increment upon standing, patients often exhibit numerous symptoms of autonomic nervous system dysregulation, and research by the Mayo Clinic suggests POTS is a limited autonomic neuropathy (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). Many POTS symptoms seem to be caused by an imbalance of the autonomic nervous system's control over blood flow. It is the autonomic nervous system (ANS) that regulates the needed adjustments in vascular tone, heart rate and blood pressure upon standing. Some of the messages coming from the autonomic nervous system tell the blood vessels to relax or tighten. In people with POTS, the system seems to be out of balance and blood is not going to the right place at the right time to do what the body needs (Fischer, 2007).

The heat from a shower can trigger someone with POTS.....do ask ur Drs to check u for this.

   "selma"
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1372667_tn?1307677663
Hey Selma! I've never heard of that. I will have to look into it. I just went back to thinking about Chiari because I have not actually seen a Chiari specialist yet. The NS a saw was just a common NS I was sent to by my family doctor because he and my radiologist saw the small Chiari back in 2008.
There isn't a specialist that I know of in Oklahoma and I dont have a lot of financial support to actually travel to see one on my own yet.
The NS said that I have Chiari but it was way to small to cause any symptoms at all and of course my parents believe him.
Do you still think I should try to see a Chiari specialist or just let it go?
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620923_tn?1393294254


Heather, if u look at the LINKS page in the Health Pages there r non profit groups that will fly u to Dr appointments and surgery...and places like TCI in NY and the Chiari Center in WI both have locations for families to stay at a reduced price (NY at $25 a night!!) U would have to call and check as prices may have changed that was 2 yrs ago now but still...

The problem with most Drs is they do not understand that those with a smaller herniation can have more issues then those with a larger or longer one....if it is long and thin it will not obstruct CSF flow, but a shorter wider one can cork it up and cause a lot of issues.

U should deff see a chiari specialist and let them guide u as to what is going on and how to proceed.

   "selma"
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1372667_tn?1307677663
Thank you Selma. It's nice to have people to talk to about it. I know my parents care and love me, but they dont understand how that NS could not possibly know what he's talking about. It's hard when I talk about Chiari or the problems it may be causing and hear them say that the doctor said you have one but it's not hurting you. I get the feeling that they think I do it for attention. :(
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620923_tn?1393294254

  Did u read the poem at the top of the forum by Dr Oro? Print it off and let ur parents read it.... it could open a few eyes as could asking them to join the forum  : )

    "selma"
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1687929_tn?1319429611
I am glad I read this post. I did not know a wider shorter one could cause more problem. It is very important I believe everyone with a chiari see a specialist. I haven't had my chance yet but I am trying my hardest with no insurance to figure it out but that's my goal. Heatherbelle I hope every thing works out and you get to feeling better. Definitely don't lift furniture selma is right that is a big no no! I have scene all sorts of doctors since I was 13 for these symptoms and just got diagmosed in jan at 22 because I was rearended by a dumptruck and got an mri so I won't be satisfied till I see a specialist and get the truth.
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1372667_tn?1307677663
I know the feeling of seeing tons of doctors. I've had tons of problems since I was about 11. I also have very mild CP, Meniere's Disease and HORRIBLE acid reflux on top of all the symptoms that my Chiari is possibly causing. I would call my parents a lot in elementary school to come get me because I didn't feel well. My parents and teachers thought it was because I'm naturally a shy person and didn't want to be in school until I was in high school and was still having that problem. I have a specialist for everything EXCEPT Chiari now. Like I said earlier, my parents believed the one NS that said my Chiari wasn't anything to even think about and there isn't a CM specialist in my state. I am 22 and still in college (because I cant handle a full course load physically) and sadly very finacially dependant on my parents. I don't really have the money to travel to a specialist on my own at the moment, but I'm looking into every option I could possibly find...
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