I think I have chiari? Need help

[starstorm1313]

Hi I am going to try to put a long story into a nutshell here.  Btw, this is my first post here it anywhere for that matter. I am 34 and have had three children. My third having been born in Dec of 2011.  I haven't been "well" since.  I have suffered from the so-called "classic" migraines since the age of 7. I have always been heat intolerant.  I have had IBS type issues most of my life but never officially diagnosed with such.  I have had uneven pupil dilation since my teens which did prompt my first MRI but evidently they found nothing or nothing worth mentioning atleast. So lets just say I have had several chiari malformation type symptoms and dysautonomia type symptoms all along.  After the birth of my first child in 2004 I started having daily headaches, all in my forehead and over my left eye.  Attributed them to stress and heredity as my mother also suffered terrible migraines and a host of other problems that were never correctly diagnosed.  Her mother had them as well and died at 43 from apparent heart disease.  I say apparent because I found out from my dad this year that my mom's mother had like nine brothers and sisters all who dropped dead before the age of 50. So after the birth of my second child I was having pain in my upper middle back along with headaches etc. Then my mom passed away suddenly at 54 years old and I was the one who found her and that's when my "anxiety" began. For two years or so I had anxious feelings that seemed like they came from no where. Like I couldn't take a deep breath,  heavy chest and short of breath. Blamed it on stress again. Then I unexpectedly got pregnant a third time in 2011 and had terrible "anxiety" that landed me in the ER once, bouts of dizziness,  low back pain that was awful and what seemed to be sciatica issues but never had any shooting pain down legs.  All three kids were delivered vaginally with epidurals but the last epidural went up instead of down which caused me to feel the delivery and probably to try way too hard to deliver him quickly!  I haven't been right since.   I had a terrible issue with my right hip about two months after last delivery and then the pain under my right shoulder blade began. It was an annoying, bad at times off and on pain at first then set in painfully permanent shortly after.  It's now been 8 months of solid pain, misery, and worry.  I definitely see a pattern or flare up situation.   I spent three solid months trying to figure out what was wrong with me.  I never even heard of chiari malformation,  syringomyelia,  dysautonomia,  or arachnoiditis until last year.  All of which I suspect I have. My mother had mitral valve prolapse which I always thought she had been born with and knew nothing about and evidently neither did her doctors or she. She was dx'd after having both kids and having meningitis twice.  She told me she was finally dx'd with mixed connective tissue disorder but now wonder if she had EDS.  I have suffered through some very disturbing neurological symptoms since May of last year including new onset of cataplexy including total collapses, possible narcolepsy,  dystonia type symptoms involving whole body and ones just involving my thoracic, chest and abdominal areas.  I have had several episodes of what I call the unwarranted panic attack from hell where out of no where my heart rate spikes to 140+ and my BP spikes to 164/105 or something crazy ( ER caught it at 117/100 a good twenty mins into one of these) these attacks were always lengthy,  brought on by nothing, ended in cataplexy and happened when I had little to no sleep the night before.  I have had one incident of almost complete paralysis down right side of body, I had my eyes clamp shut and my jaw etc stop working for four hours straight.  I am currently having another round,  a bad one, of POTS type symptoms my blood pressure changes with any movement and my heart rate is all over.  Like my BP will drop upon immediate standing and hr increases by atleast 30bpm but my BP will continue to rise as long as I stand etc.  I am having massive pressure up sides of my neck a deep ache and pain down through spine between shoulder blades.  I have burning pain up spine which feels like a hot rod being run through my back starting at lower thoracic and ending lower cervical. My neck is stiff and sore.  My vision goes funny. Having some ringing in ears sporadic burning up left of face, back of head,  neck, arms,  stomach and breasts.  I have some pins and needless in feet I get very cold in legs and hands and nose and face but also get very hot sometimes.  I am absolutely miserable angry and worried especially with my family history.  I have had problems with anger and rage and being overly emotional.  This current bout of immense pain and torturous BP issues is going on nearly a month now and I am getting angry with feeling this way and with the world.  My spine is very tender about the place you get an epidural and my spine feels swelled out or something.  I also have nerve pain throughout upper back and shoulders and down left of spine, feels like electricity and seems to pulse with my heart whenever I stand or bend over or pick up something.  I am at the end of my rope with all this going on for so long without stopping.  Granted the symptoms change but all the pain and fatigue and "sick" are constant.  I don't have any health insurance and no way to immediately afford any and things just get worse. My back has spots of total numbness the pain in my joints,  legs back and neck are only getting worse. Guess I just need some advice, support and understanding as my family really doesn't believe me,  thank goodness my kids and husband do!
Sorry for the long post and I am pretty sure I left something out lol

[selmaS]

  We have a link here for the trails.....this is an older thread but the link will get u in and u will have to see what is available now.

http://www.medhelp.org/posts/Chiari-Malformation/clinical-trials-are-recruiting-now-/show/706710

[starstorm1313]

Thank you. I have been wondering about trials. I will start looking A round and hopefully I can find something all I know is that There is a definitely something going on And I need to find some help somehow. I have applied for Medicaid But I was denied.  

[selmaS]

  No worries....even if u r dx'd and find u  do not have Chiari u r always welcome here...and I hope u continue to let us know  how u r doing.

There r clinical trials that u can apply to be part of and all the testing is of no cost to u,...

And try going to a clinic to get a dx....many Chiari Drs give some time to clinics in the hospitals they r associated with,...u get the same care.

  Is there a way u can apply for Medicare or Medicaid?

[starstorm1313]

I do not have an official diagnosis nor an MRI because I don't have insurance and have no idea what to do.  My diagnostic mission started at a gallbladder problem and after months of careful hunting searching and digging all roads have led back round to chiari malformation and related issues.   I have found nothing that even remotely comes close to describing the type of pain I have and the host of other symptoms and problems I have experienced over the past months.
I forgot to say that I have also had scoliosis since age three.
Thank you for welcoming me to the forum :)
I know no one here can tell me what is going on for sure I am just very alone angry and frustrated. Hoping for some advice on what to do if uninsured and for some ears to vent who may understand what's going on.
Thanks for the support with my mom
She was also sick and in pain for most of her adult life and doctors blew her off over and over until she was quite depressed and addicted to prescription drugs and she died never knowing what was really wrong. She was never validated or given the help she should have been given.  I want a diagnosis for me as much as I do for her as I believe there is some strong genetics at work here. Also for my own kids especially my daughter. Maybe I can save them from the guessing game when they are older.

[selmaS]

Hi and welcome to the Chiari forum,

First, let me express my deepest sympathies on the loss of your mother,and the fact that you found her that must have been very difficult for you.

No wonder you have stress, but Chiari can also cause anxiety and heart palps and some of the related conditions like POTS and EDS can affect the heart....not all with these conditions have heart issues, but it is something that should be checked,....as should sleep apnea.

Sorry after reading all of ur info I do not recall u having had a MRI or a Chiari dx....I would suggest u try and get a MRI of the cervical spine or brain or both....if they see a chiari malformation or low lying tonsils,...ask about a CINE MRI.

Then testing to rule out other conditions that have similar symptoms, and related conditions as well.

Know that u r not alone, and that u need a true Chiari specialist to help u once u have a dx.