… So I’d like some detailed input on anyone’s experience or words from drs on this. I feel almost alone with chiari & drs help but seem to not have time time to bother… Last night I had what I would call a chiari attack… Slowly increasing to blurry vision in my left eye, tingly/numb left hand to whole arm, then my throat mouth, and whilole left side of face became numb, then a aching headache on my right side. After about 15-20 mins its all goes away. Now the next day, I’m fine but when I cough I have a pulling/aching sensation on the right side of my head… This happens maybe once a year to me. does this happen to any of you? Is this just typical chiari symptoms…or am I continuing to have mini strokes… I doubt it… I’ve had 2 mris in the past 3 years they would have found something… Right? Thanks for your words and time. I know it’s best to speak to a dr but honestly I feel it’s just as if not more helpful to seek input from others with the same condition.
Have you ever been check for Factor 5 Leidens Gene Mutation? I have symptoms very similar to yours. I was prescribed Inderal for headache prevention and it seems to have really helped with the sudden onset symptoms. I have never been diagnosed with a clot but Factor 5 puts you at an increased risk. they can do a simple Reactive Protein C level test if your insurance doesn't cover genetic testing. I have wondered myself if this complicates or worsens Chiari symptoms myself...
Please discuss these symptoms with your Dr. I would also advise you to go to the ER when you experience there "attacks.". The symptoms you are explaining are very similar to my TIA's or mini stroke symptoms. Please be safe. You and your health are very important.
I get “attacks” too. I have always felt so alone with this that I just thought it was normal. Compounding this is that I get hemiplegic migraines on top of the chiari attacks. The migraines last about a month so those are problematic and confusing too. I have spoken to drs and get blown off most of the time. I feel for you and agree with everyone else that you should report everything. It took me almost 7 years to be diagnosed with chiari and hemiplegic migraines. I hate being the squeaky wheel with my drs but felt I didn’t have a choice.
I feel the same way you do about going to Dr's every time I have an issue because I know they will send me home and say I'm fine and look at me like I have two heads when I describe some of my symptoms. I have gotten the numbness in my face a few times to where my left side of my face and limbs are numb. I've gone to ER and was fine. I have them every once in a blue moon but I feel your pain. I thought it was a mini stroke too! Scared the crap out of me! I just feel these days that what if I did have something really wrong, how the heck would I know?! So basically I just try and ride through it and let it pass, or there had been times where I take a Xanax and relax because it would give me a panic attack cause I would get so scared. I don't take Xanax anymore. It actually makes me feel worse now so I try to distract myself by watching something funny so I can laugh rather than cry over my crazy symptoms. lol I hope you are feeling better and hope this helped a little. I know how frustrating this. I have been getting so many new symptoms lately I don't know what to do with myself!
Oh!! im happy that someone brought it up hey, cuz ive also had these attacks but ddnt know how to discribe them to anyone, im very used to them now....jessie521 i realli hope its nthng crious hey..
I have those episodes about 3-5 times a month but they normally last all day. Your problems are guaranteed to increase as you age. I am almost 23 and became symptomatic when I was like 8 years old. Everyone is different but I'm sure every ones symptoms has gotten worse over the years. And some maybe better with the surgery. The thing you have to remember is be open with your doctor even if its something small they need to know. Also try to reduce the stress you are around, reduce some physical activities if it puts a strain on you but don't fully reduce your activities because that can also harm you. When you notice these problems starting write down what you were doing before it happened and when it occurred also write down all the symptoms and detail them specifically for your doctors. keep a data sheet so you know and track whats happening otherwise a doctor cannot rule out every thing and they cannot fully understand whats going on unless they know what is happening. Good luck and hope you get to feeling better.
I have gone to the drs after one of these “attacks” and they don’t seem concerned. I don’t know what to do.
Yes, it’s usually after stress and after doing something physical. It is not often… Maybe once a year, if that. I always have random numbness and tingling. I’ve told drs about these … Which was why I had an mri to test for mri… And then they found chiari… And that’s it.
Oops to test for ms.
they tested me for same no ms just chiari as well but all many drs will do is give you the run around and pop you with pills sorry you had to join this group of people. Ask for a cine mri to check if there is a small flow blockage sometimes you will qualify quicker for the surgery. Many people say the surgery has helped them but being its a once a year issue with you they may just monitor your chiari until it worsens.. Also find a doctor that deals with chiari specifically.
I used to be borderline until last year. But if you get the feeling of pressure when you cry or a feeling of you're going to pass out, then yes, it is the chiari. Anything from crying, laughing, or playing with me kids for me can put me in a episode of pain/pressure to even not being able to feel a limb each attack is different none are the same. If you are borderline my only advice is get a recheck every 3-5 years unless symptoms get worse. Being yours is small symptoms just keep a check on the herniation and I haven't experienced high bp mine is always too low. Everyone is affected differently all you can really do is go off your gut feeling.
Be sure you find a specialist in the chiari field unless you are very herniated the mainstream medical community will not take you serious.There doesn’t have to be a great herniation to have life altering symptoms.I know the feeling of being taken to lightly for 27 yrs I suffered with chiari with no relief except for relieving me of money,no help just lots of guessing.I could not get help even though there was a specialist near by no one would tell me about him even though I asked them about finding someone in the field of chiari.It seems most NSs think they know how to diagnose this condition they just don’t,they don’t do it to cause us pain but never the less it does cause us to go for years without help.I would say find a speacialist!!The lonely feeling is part of dealing with Dr.s that might mean well but we need more than good intentions we néed help,with a specialist the chiari can be ruled out or diagnosed,with other dr,s you may be in for a long journey.
you got that right Lynn. Been getting the run around since i was little. My mom remembers he first time I went about my legs hurting during P.E. and the pressure I was feeling the dr's back then tried to say, "she is just lazy." Then came the full blown migraines and blind spells from the chiari I loved this statement, "its all in your head." Finally got the diagnoses at the age of 16 by the one doc that said I was a mystery patient that he didn't understand and that he has never heard of the combination of symptoms. Thankfully some of us get persistent drs. Unfortunately the most recent comment by my doc your sure not a boring patient, I enjoy you, you help me learn about something I have never treated, after that I started searching for a new doc. lol Most docs are more for the money, so watch out for that and get reviews on the dr's.
Be sure you find a specialist in the chiari field unless you are very herniated the mainstream medical community will not take you serious.There doesn't have to be a great herniation to have life altering symptoms.I know the feeling of being taken to lightly for 27 yrs I suffered with chiari with no relief except for relieving me of money,no help just lots of guessing.I could not get help even though there was a specialist near by no one would tell me about him even though I asked them about finding someone in the field of chiari.It seems most NSs think they know how to diagnose this condition they just don't,they don't do it to cause us pain but never the less it does cause us to go for years without help.I would say find a speacialist!!The lonely feeling is part of dealing with Dr.s that might mean well but we need more than good intentions we néed help,with a specialist the chiari can be ruled out or diagnosed,with other dr,s you may be in for a long journey.
I had a CINE MRI and hoping i find the results it’s been 3 weeks, I have been working so much they are closed before I can even contact… My NS told me my symptoms are from chiari… But those “attacks” are kind of scary they don’t hurt at all just like an oh myyyyy moment lol. It’s very hard to find anyone that is specialized I have a good NS but that’s it… I’m still trying to find a neuro but I can’t afford time out of work for a dr appointment.
My little boy is only 4, so he can't really explain how he feels all the time. He was diagnosed with chiari when he was 6months old. But I have noticed here lately he has been falling a lot some days. I ask him how he is feeling and tells me fine. But I still worry he may have his off days to from chiari. At his last MRI the dr said everything looked good and was that was best MRI he has ever had. My question is, has anyone had the decompression surgery which he had, the Dr tell them that everything looked good & think they were cured from Chiari? Everything I read says there is no cure just relieves symptom's.