symptoms

[ReneeA37]

Just diagnosed with Chiari and wondering what symptoms people initially had when diagnosed and what they become over time.
Also, for years I have had headaches, but my symptoms have changed rapidly over the last 4 weeks, is it normal for progression to happen so quickly??
I feel like I can't think or process quickly and am often confused, is this normal or the anxiety of just finding out I have this condition?
Anything anyone wants to say would be appreciated as this is new and scary.  :(

[selmaS]

   Hi.....try  to  avoid  lifting, bending  things that  cause you  to  strain....even  a  stool  softener  if  you  have  issues .....

  Also  take  notice  if  your  pressure increases when  you  are  upright  or  laying  down  it will help  your  Drs  with  knowing  which  direction  for  treatment.

  Good  Luck  on  the 30th....and  Have  a wonderful  Christmas !!

[S_Chaney]

And be careful when doctors try and tell you some ailment/symptoms you're feeling isn't associated with Chiari.

Chiari puts pressure on the cerebellar tonsils and the brain stem. Most doctors remember the tonsillar symptoms but neglect the brain stem compression aspect. Which tome is very odd since the brain stem compression can cause an unlimited number of symptoms. Every sense or control from head to body passes through the brain stem and is subject to being affected by it.

[ReneeA37]

Thank you for all your responses, I am just SO overwhelmed right now. Seeing the chiari guy on the 30th. Is th ed anything medical or natural to help relieve the pressure. This has come on so fast, not coping well.

[baccalynnwv]

For your public speaking... until you really make a decision about whether to continue, maybe you can come up with a joke you can crack when you lose your words or what you were talking about. I find that usually helps me when all of a sudden I completely forget what I am talking about right in the middle of a sentence. Then after I get a laugh, I seem to relax and remember what I was talking about. This is happening more and more to me though. :(

I don't think anyone can predict how it will progress with you. You might have to take it day by day depending on how you feel.

With the heavy thinking, are you at a computer desk looking up and down from paperwork to computer - or moving your head in many different directions while you are contemplating? That could increase the headaches tremendously.

Do you have your MRI report or summary from your doctor or Chiari Specialist? Have you had a full spine MRI to look for a syrinx? If you have craniocervical instability - the movement of your head will really effect how you feel. Your MRIs and doctors can give you a good idea as to if you have this or not.

[Elisaandbucky]

Hello Renee, I have read the responses you have gotten above from Selma and and Baccalynnwv. Like both of them, the worst of my symptoms are throbbing pressure headaches, pressure behind my eyes, and constant neck pain. These symptoms are worse during menstruation. Bladder issues are the newest and scariest symptom. There is no predicting or regularity in this for me.

Public speaking can be challenging enough, without memory issues and recall. I can only imagine how your difficulty with this affects you. Are you speaking regularly for your job? I am a teacher and I read aloud my lecture notes over and over to help me with recall. If you are able, get extra rest, which always seems to be helpful for me.

[selmaS]

Yes Chiari does affect us and will slow us down. Memory, recall and sometimes a word is lost.Doing puzzles and such can help. For me getting overly emotional at work was a huge red flag. We all get affected slightly different

[ReneeA37]

Thank you for your comments. It sounds like and from my experiences so far you never know what to expect from day to day?!
Question my headaches seems to get much worse after heavy thinking times or when I need to process and make fast decisions. Is this normal?
The slow thinking thing is really a concern too, I feel I may have to stop my public speaking I do and my job?!!
I'm worried, it's so nice to hear from others..,

[baccalynnwv]

My physician and neurologist thought I had MS at first.
My symptoms are varied. Headaches of course, neck and shoulder pain/stiffness/weakness. Sometimes my vision looks like I am looking through water. Double vision on the peripheral. Weakness in the legs. Throbbing pressure headaches, pressure behind the eyes. Bladder issues. Numbness and strange tingling or hyper sensitive sensations or patches on my legs. Face goes numb or tingles. Slow thinking process. Hard time finding words, or cant get the words out. Swallowing problems - mostly with liquids.

And some days my typing is horrendous, even without auto-correct! LOL

[selmaS]

  Hi  and  welcome to the  Chiari  forum.

  It is possible to feel very  anxious  after  getting  a DX  of  Chiari  as  it is quite  scary.....but  Chiari  and some  of  the related  conditions  can be  a  cause  too.,

I use  to have  heart  palps  all  the time and  since  my  surgery  I  have  not had  them.....

  Anything  can cause  symptoms to  flare (worsen)  coughing, laughing....riding  in  a car  on  a bumpy  road.....stress...having  the flu.....


Chiari  symptoms  cycle  and  sometimes  once  we  get into  a flare  it  does  not feel  like  it  will  end.....

  Make  sure  a CINE  MRI  is done  to look  for  a CSF obstruction  and MRI's  of  your  complete  spine to rule  out  related  conditions  like  Syringomyelia,disk  issues, tethered cord, and  other  testing  for  ICP,POTS  and  Ehlers-Danlos....sleep  apnea....


Educate  yourself  on  Chiari  and  ALL  related  conditions  and on  Drs  to  find  the right one  for you.