I had a bad attack in January of extreme imbalance and hyperacusis, could barely walk, uncomfortable sensations on left side of face, severe head and neck ache (felt like migraine from the back of my neck right up to the back of my eyes. This was the first time I ever felt like this - it lasted about 3 weeks and went away.
In August it came back worse than the first time, lasted most of Aug, then went away for a few days. It came back in the beginning of September, not as severe as the first two times and it has come and gone a couple times since then, again not as severe as the first two times but nevertheless itās very obvious and itās affecting me.
In between episodes Iām feeling much better except for symptoms Iāve had for some time (dysphagia, motion intolerance, slight gait disturbances). Is this a typical pattern for Chiari? Meaning it comes and goes and in between one is somewhat normal? Iām never 100% but in my good times Iām probably close to 85%.
From my experience, thatās very normal. I can ride shotgun to to my stepsonās college football game 3 hours away with no carsickness and scream like a crazy persons when I get there amidst all of the noise and chaos one day with just a mild migraineā¦but feel like death a week later ā¦barely able to tolerate light through the windows or noise from TV while lying in bedā¦stumbling as I try to talk 10 feet to the restroomā¦ repetitive spurts of vertigo ā¦numbness and pain. Unpredictable and difficult to explain. So now I donāt. Iām rarely 100%, but I take advantage of every day that I can get up and push myself to take advantage of the @Wake Upā Win!! I think everyoneās experience is different. Please be careful not to struggle with validating your experience. I dealt with that for some time and it only increased my stress level as I tried to justify what I was going through ā¦leading to more flares. Most people just donāt get it. It is what it is. Whatever you feel at any given time is normal for your condition. You are okay.
Dear Janey, I donāt know how long youāve been having symptoms. I went 10 years before I was finally diagnosed correctly with Chiaris. The first 6 years, the symptoms came and went - usually in 6 month increments. Thatās why I ended up seeing so many different doctors - 'cuz the symptoms shiftedā¦ from cardiac events to IBS to headachesā¦ on and on. Butā¦ eventually, ALL the wretched symptoms became permanent - the last 4 years was total agony without a second of relief. My neurosurgeon told me that the sooner you have the decompression after the onset of symptoms, the better the chance of full recovery. (preferably no longer than 2 years after symptom onset.) I am now 6 years post-surgery, and still have some permanent symptoms. (Like re-occurring paralysis, BP drop, loss of gag reflexā¦)
I believe it is - my son started with symptoms at the age of 8. We did not know what it was was - it went on for about 8 months then stopped - when he was 11 years old it started up again - at the age of 13 it started again and then we discovered chiari - he had surgery and had an awesome 3 years then it flared up at the age of 16. he was so angry and confused - he did not go to school for a year - he is back at school now and seems ok - I wonder why - I thought his could be hormone related but have no idea - we just live with it. When he is about to get flu - we all tiptoe around him and the dog hides under the coffee table
The input so far is true because there are many aspects of Chiari. I am 9 years post op and have had some symptoms reoccur in the last year. I felt a slight settling of the brain in May of last year; which was not painful at all just a little surreal. And as it goes I have not had much luck in finding a neurosurgeon that cares to listen or not behave in a verbally abusive manner.
What I found out at the Mayo Clinic in Minnesota from a neurologist was that the sensory system of the brain is malfunctioning and at this time there is nothing that they can do; they find this in about 20% of their patients. He advised me to see my primary care doctor and to ask about Cymbalta or Savelle.
My primary care doctor is a Doctor of Internal medicine and she has been great. The Cymbalta helps the misfiring nerve endings to calm and it has lessened pain and I can feel the definition of my feet and hips and am back more to my normal mobility. I also have done chiropractic care for 20 years and that takes a while to take affect, but is well worth the commitment.
Sinus and allergy issues, caffeine, growth and hormone changes,and some nutrients that affect heart rate or increase metabolism can cause issues as well.
This website is still fairly new to me, but I have found it extremely beneficial in helping me to not feel so alone with having Chiari. From what I understand a person studying medicine is finding this Website helpful to their studies and that is promising.
Dear Linda, Wow. What you said about symptoms returning post-op has me alarmed! I was (briefly) told by my neurosurgeon back in 2012 that my surgery was āno guarantee that Chiari symptoms were gone for good.ā Although he couldnāt give me any actual case samples. So, even though Iād heard that the decompression wasnāt 100% a fix-all, I never heard of anybody experiencing anything first hand. Until you! So - now Iām full of questions! I am 6-years post-op - but Iām also nearing 60 yrs of age. Does getting older increase the risk of Chiari symptoms coming back? (I donāt want to ask you how old you areā¦ so this is a āyes,ā ānoā question.) Iāve also gotten involved in a rather rigorous athletic hobby (track & field race walking), and often wonder if extreme physical exertion might not exacerbate old symptoms. Soā¦ other questions: What do you mean that caffeine can cause issues? (Prior to surgery, I hated coffee. Now - post-surgery - I suddenly LOVE coffee and canāt get enough. But, should I be concerned?) And - how could you tell your ābrain was settling?ā What does that feel like, exactly? Like I said - at my age, it seems EVERYTHING is settling!!!
Hi, and thank you for your responses. I finally see the neurologist this coming Monday. Itās been a 2.5 month wait for this appt, I didnāt think it would ever get here. I only hope he doesnāt blow me off as every other doctor seems to have done. Iāve been going back and forth to doctors for the last 10 or so years for headache/vertigo/dizziness/dysphagia and feeling generally unwell and they all seem to think Iām fine.
Right now Iām feeling okay (which is only 85% of my best). Not that I want to feel bad, but I wish I could be feeling a little more symptomatic for this appointment so he could see me at my worst. Not that itās helped before . . . . at one appt I had to be practically wheeled in and the NP said āmaybe itās the humidity.ā
I get pain around august,september,october and November right through summer it hits me like a tonne of bricks and I feel its because of the change of season it messes with your hormones and makes pain tolerance very low.Im from Australia and where I live its tropical humid this time of year so I get extra tired/headachy and I have noticed a pattern over the last 2 years my head also swells up and when I miss sleep cause of the heat its worse I get very dark circles under my eyes and its at its worst when I first wake up in the morning.
I will be 61 soon and had a passion for riding bike. I liked to push myself which gave me confidence and a real ego boost. I do not believe my age was a factor of finding that my brainās sensory system is malfunctioning; it was because I had over exerted my body which ramps up your central nervous system.
We were born with this condition and it needs to be managed not challenged. Though I loved the ego boost and that my friends and family were pleased with my biking I now know better.
Caffeine ramps up you central nervous system as well and some nutrients can do the same and for me it is niacin; my heart rate will increase abruptly to 145 bpm.
For myself the brain settling is not painful it is just a unique sensation of a sliding at the base of the skull.
My intentions are to protect the good I accomplished through having a painful brain surgery and respect the wonderful doctor who opted to help me and perform what I feel will one day become a common procedure.
Hopefully you find success in whatever you choose to do.
Thank you for your response Beth and best wishes.
That is exactly how it happens to me. I never know how Iām going to feel when I wake up. When I was first diagnosed with Chiari I had a headache every day for 3 months with nausea eye twitching and right sided weakness. That went away. Then I had awful dysphasia and motility esophageal issues. That went away for almost 2 years and now the dysphasia has been back horribly for 3 months. Itās very episodic for me.
Whatever you feel at any given time is normal for your condition. You are okay.
