Chiari Online Support Group

Wondering if anyone has experienced this

Hi so I was wondering if anyone can shed some light on my current situation im sooooooooooo tired like all the time I try to push through but always end up having to stop im flat out getting through at least one day without a nap.Also my heart beats super! fast for no reason at all when im tired like if I bend over to pat my dog bam!!! heart beats super fast if I walk litrally a metre to the kitchen sink its like I have started power walking or jogging It bothers me because I feel weak and like I just need to lye down and go to sleep im so tired I just! want to get through one day without a nanny nap im only 25 this year it doesn’t make sense im 2 years post op and I thought I would have a bit of bounce in my step im trying really hard to keep going and seeing the positives but im just so tired.How can anyone live like this let alone have a career I should be running rings around people twice my age but im not I feel like an old person.

I am constantly fatigued as well. I had my second decompression the end of 2016 and a cranioplasty last December. Have you ever had a tilt table test? Some of your symptoms sound possibly like Dysautonomia. I have Neurally Mediated Hypotension and I know a lot of Chiarians have POTS - both are types of Dysautonomia. Anyhow, a tilt table test will tell you if you have a form of it and that can cause fatigue, irregular heart problems, etc.
Getting 9-10 hours of sleep helps me to function better the next day. I am a special education teacher so my job is exhausting in itself. On tough days/headache days, I have to come home and take a 2-3 hour nap as well. I also have an accommodation that if I am not doing well that day, I can leave at 2pm. Having accommodations through the ADA can help you maintain a career. Hang in there and know that others understand what you’re dealing with on a daily basis.

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Yes I have often thought that it may be dysautonomia or POTS how do you get that looked into though I go to the doctors and every time I feel like im digging in the dark I would like a test to be done for all this but don’t want to go into the dr to test for everything there is something wrong I feel it but how do you pin point where its coming from I feel like a hypochondriac I have done a bit of research and I don’t want to seem like I know everything because I don’t but what I really want to know is it actually ok to go to the dr and say ‘‘I would like for you to test for this because I have a strong feeling it may be this’’.I don’t want to waste the drs time or resources.Is it worth digging to find the truth or should I just keep napping and deal with it.

It is a cardiologist who performs the tilt table test. I don’t see any problem with asking your doctor for the test. They work for you. You can tell him or her that you know some people with the same conditions and you were telling them the symptoms you have and they suggested you have the test to see if it may be a type of Dysautonomia. The other important thing too is to stay hydrated. Good Luck!

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It is known amongst Chiarians that it is not good for us to bend over, or to do stuff above our heads, carry anything or pick up anything over 25lbs. I know that when i bend over at the waist for a min, and come back up. I am very dizzy, face feels flush and heart beat is like strong and in my throat, head kinda feeling. I always hear my heart beat in my right ear. Also not to drink out of straws or smoke because of the suction. The fatigue has been known to be a side effect of CM1. I’ve been told decompression works about 75% of the time from neurosurgeons. Which won’t even see me. I’m not a candidate for decompression surgery. I hope I could help some.

Sorry, I do feel the tiredness. It will come outta nowhere sometimes. And it’s like I could just lay down and go to sleep althat instant.

Goodness! For 10 years, the only thing I was diagnosed with was Chronic Fatigue Syndrome. I tend to call it a ‘paralysis’ because when I have relapse days, the ‘Fatigue’ is so strong, I can barely move and can become totally incoherent. I know a lot of the weakness comes because the cerebellum - which is the part of the brain in charge of muscle coordination - is what was oozing out the bottom of the skull in the Chiari “Squish!” :no_mouth: During my decompression surgery, my neurosurgeon actually removed a little bit of my cerebellum. (He said, jokingly, “You won’t miss it.”) The weakness gets to be so profound, I can control almost nothing! It is scary. On those relapse days, I have to stay home - do nothing but lay on the couch and watch TV… waiting for my coherency and coordination to return. Usually it does, but it takes about 24 hours! Odd.