Chiari Online Support Group

New, been having symptoms since I was young

Hi Chiari Support Forums .

I have been having symptoms since I was young . I am 26 now , and my symptoms are getting worse . it is because of this I wanted to join these forums to see if this sounds familiar to anyone .

I have some other conditions including (now dormant for 15 years) epilepsy, and Ehlers Danlos Syndrome.

When I was 10 or 11 my mom noticed gait issues and this was when I had an MRI that noticed a syrinx in my mid spike. The syrinx is about 5 mm long.

Since I was 16 I then noticed very mild ringing in my right ear, and episodes of dizziness… both symptoms would quickly go away if I lied down. I had hearing tests done and my hearing was perfect… so they ruled out hearing loss as cause.

Then in 2013 I developed fast heart rate that would come out of nowhere. I had to be put on verapamil to slow my heart rate down. My ECG’s were irregular, I had an ultrasound of my heart, nothing wrong with the heart itself could be found.

The ringing in my ears got worse, and new noises overlapping each other appeared. I also noticed I had less energy than before which made doctors suspect a thyroid problem or vitamin deficiency. Those came back normal as well.

Then in 2018 I developed two new symptoms - muscle twitches and headaches. The headaches would come out of the blue and would be a sudden sharp pain towards the back of my head or crown of my head , and the pain could be so bad it’d put me into a daze even though the pain would last a few seconds. This got more often, now I have headaches every day and muscle twitches nearly all day. The muscle twitches are all over my body including eyelids and face, and feel like bugs under my skin, or electric shocks. These tend to come back at noon or in the afternoon and seem to appear at a similar time of the headaches.

The ringing in my ear is very very bad now , I also am getting fluid building up behind my eardrum, and sometimes water just pours out of my nose. Bending down causes pressure feeling in my eyes and head and when I stand up straight I feel very dizzy. I also get dizzy and back pain if I bend my head forward. Not sure if that is related to the syrinx or not.

Only things that improve symptoms are lying down and overhydration. If I lie down flat for about 15 hours and I wake up in the morning in bed the ringing will be gone but shortly after I get up it’ll start to come back again. It can go from a 0 to a 10.

I am also now having trouble doing even simple hands on work, and I am forgetting everything constantly. my family tell me it’s similar to my grandmother’s mother when she had dementia. this is concerning me as well as it is also getting worse. If I have been upright for too long I start to fumble with my words.

I had an MRI in 2018 (lying down, no contrast) and my neurologist said it was normal. She gave me migraine pills which made my symptoms 3x worse so I had to stop them.

I had another MRI two weeks ago, without contrast again. This time the MRI was after I’d been upright for 24+ hours so my ear was ringing loud, I was having hundreds of jerks and twitches, feeling sick, headache, etc. still waiting for results.

just trying to make sense of what is happening here. Can you have chiari even though the MRI looks normal? When I was younger ‘chiari’ was mentioned after the syrinx was found but nothing of it was mentioned again.

Welcome to the group. My 11 yo daughter was diagnosed with Chiari in August last year and most recently with EDS as well. She is very symptomatic and has nearly everything you have described as well. She does not have a syrinx but all the rest sounds exactly like her. I’m sorry to say that even with her diagnosis, we are struggling to find drs that understand or are willing to admit her issues are related to her Chiari.
I pray that you find the support you need here in this forum. Personally, it has been a blessing to us—especially me, since I am not the one who is sick, it would have been easy to listen to all the drs that have told me that it was psychosomatic. If not for this forum I am not sure that I would have been able to properly educate myself and her. Best wishes to you :purple_heart:

Thank you . for me the worst symptoms are the ringing that comes back when i get up, and the memory loss and overall just not being able to think clearly/getting confused easily .

would a standard lying down MRI be sufficient to rule out chiari if it looks normal? Or can there still be brain fluid blockage going on? I have a very small head so I was joking with family that my brain is too big for my head , but now i am wondering if that could be the case .

To be honest, from my research I believe that the existence of Chiari (technically defined by low lying cerebral tonsils) can vary greatly. What used to be only noted at 5mm or greater is now being challenged. In my opinion it’s the presence of symptoms, not the amount of descent that is important. Do you currently have a neurosurgeon? Are they familiar with Chiari? To us, that is the most important (as well as most difficult) place to start.
I will say that this is only my opinion. This site has a fantastic search engine where you can see many different experiences from people that have far more experience than I do. We are still at the beginning of this journey.

I’m currently under a neurologist, but not a neurosurgeon. The neurologist is convinced I’m suffering from ‘‘migraines’’ and she keeps giving me migraine pills that make all of my symptoms worse. I’m considering seeing a different kind of specialist if my neurologist still tries to give me pills that don’t work .

All my problems seem to slowly start after the syrinx in my spine was found. As I’ve aged/gained wait (I used to be very skinny, now my bmi is 22-23) my symptoms are worse and it takes longer lying down (about 10-15 hours) for all my symptoms to fully go away… and after about an hour or two they’re about 60-70% back again .

Thank you, I will use the search engine .

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Unfortunately, it seems very common to be diagnosed with migraines. Several neurologists have done the same for my daughter. She has tried every single medication that they have offered and every single one made her worse, not better. I would suggest that you continue to search for a doctor that is familiar with Chiari specifically. Best of luck :purple_heart:

Is there a reason why migraine medications make it worse? Duloxetine was the worst for me…My neurologist told me it’d eliminate the headaches and ‘‘all your other symptoms’’ and my ear was ringing 3x louder than normal, my twitches were so bad, i thought i was gonna have a seizure , and the headache turned into a constant pain that made me consider calling an ambulance. dont want to do that again…

next time I see a doctor or the neurologist again whichever is sooner, still waiting for new MRI results ill consider the neurosurgeon option.

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I’m not sure why the meds made her worse but the last time she took any, she also ended up in an ambulance! Then while hospitalized, they gave her a migraine cocktail with compazine that caused her a severe dystonic reaction. It was literally the most terrifying moments of our lives!
She no longer takes any meds. :confused:

I got a call today and my MRI results ‘‘look fine’’ according to the doctor . i am at loss now . MRI was lying down with no contrast

I’m sorry, I know it’s frustrating. Please keep fighting! You have to be your own advocate! Sadly, there needs to be much more education and research. I would still seek out a specialist :purple_heart: