can I get some input ?? Is this chiari

Posted , 5 users are following.

I'm desperate and severely depressed for answers as I've been suffering with these symptoms for over a year and doctors haven't been acknowledging them at all.

I know Nobody on the internet can diagnose me but I would still like some input from people who are very familiar with chiari and the symptoms here are my symptoms :

- headache at the base of my skull (brainstem) especially when I am exerting myself like going up the stairs. Sometimes it's not even a headache just an odd feeling

- off balance feeling all the time. Not exactly dizzy just off a bit off

- EYEBALL HEADACHES.. i feel pain above/behind my eyes. I push on them for relief sometimes

- EXTREME FATIGUE, I'm always always lethargic and tired no matter how much I sleep

- pulsing sound like heart beat in head when I'm laying down

- EXTREME FORGETFULNESS, HORRIBLE MEMORY, CANT CONCENTRATE AT ALL I'm not exaggerating I feel like my cognitive ability has decreased dramatically

-courseness in voice. I'm a young female and my voice has gotten deeper

I know these kinds of posts are really annoying but I just need some feedback from experience chiari suffrerers, do these symptoms match? Do you know or anything else this could be? The weird off balance feeling in my brain stem area is especially puzzling tome..

THANK U SO MUCH for anyone who has any inpit

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4 Replies

  • Posted

    Hi aman some of your symptoms do sound like chiari but it's hard to get a diagnosis, have you had an mri scan? I had pressure headaches for 10yr before it was picked up and that was by accident. Mine was brought on with coughing, laughing straining and after sleeping. I eventually had decompression surgery 3 yrs ago, the pressure isn't as bad but I'm left with dizziness and nausea first thing but subsides with medication.. Everyone has different experiences with this.. I would push for it to get looked into as I was passed back and forward. X

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  • Posted


    I'm so sorry you are symptomatic. The best thing to do is to schedule an appointment with a neurosurgeon.  They can order a MRI of your brain and check for the Chiari.  Unfortunately, most general doctors and even neurologist may not help you.  They aren't knowledgeable of Chiari.  Chiari can affect eyes, hearing, balance, stomach, neck, and just about your entire body.  Good luck as you search for answers.  Chiari U.K. On Facebook is a good resource too.

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  • Posted

    Dear Aman,

    I fully understand how frustrated you are at present, it is true though, lots of health care professional/s have a lack of knowledge about chiari, however if you are living in the UK you may contact Ann Conroy Trust, you speak to the nurse there who is very helpful and able to read some chiarian patient's testimonial... prior to decompression I have all of your symptom plus blacked out, Imbalance, back pain, dizziness, absence minded (forgetful), but after surgery, I got back pain and yes, unable to concentrate that long, there are lots of words I some time unable to come out even though I and my friends//families know what I am about to express.., , if you still feel letargic try to get magnesium or any kind of supplements that c ontaint magnesium and selenium, multi vitamin also great, change your life style, by drinking lots of liquid (2 ltr) get chia seed from the health store mix in your yougurt or even put in your cereal..try to eat more fruits, if you can slice half cucumber each night soak it in water (1 ltrs) put it in the fridge drink it the nextday glass by glass, walk 5 - 10 minnutes just slowly (dont brisk walking) try to get a knap if you can even its only 10 - 15 minutes then try to go bed early 9 or 10...sit down in A QUIETE time take a deep breath..5 minutes that will relax you and you might sleep well, so you feel less fatigue..I was house bound prior the surgery I had to resign from work, but I am on recovery period now (1 year now) I am out of medication...if my back got really bad..I spray it with magnesium anddo yoga..and rest...but there is a light at the end of the tunnel, praying is also good...stop taking any meat with nitrate, fried food, any soda they are all bad for you, reduce the intake of alcohol and smoke, I am sure if you try taking this step by step in a matter of 2 weeks you feel much better..when you go to see your health care professionals, make sure you read all about your ondition, write it down how do you feel, when seeing them, talk to them ask them tohelp you however you neeed to explain it to them that you have read all the information about your condition, and you feel that you you fully understand how they are, however express to them how worry you are..and ask them how could they help you..ask them to refer you to the NS who have extensive experiences on hiari, hence looking and discuss with Ann Conroy Trust is good, if you are in the US then MAYO Clinic is fantastic..

    Good luck..lest us know who you are getting on

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  • Posted

    You'll need an MRI of the head and neck to confirm Chiari and rule out any other type of lesion. If you've had one already you could likely ask you doctor to look at it.

    I have something called idiopathic intracranial hypertension (IIH for short) also known as psedutumor cerebri and benign intracranial hypertension. My first sign was visual, blurrig vision and seeig falling stars. Some people experience brief moments where vision greys out, not everyone does. I experience pounding in my ears that goes along with my heartbeat. An off whoosing sound in the ears and head like blood rushing. Major headache in base of skull that moves up the back of the skull, entire occipital region. Stiff neck, shoulders, spine. Memory loss especially shirt term can be related. my memory and concentration are becoming the bane of my existence. If you speak to a doctor about it be aware that testing is conducted my measuring the fluid pressure of ceribrospinal fluid using a meter while conducting a lumbar puncture.

    Chiari can cause IIH, but then they would call it secondary intracranial hypertension because they know the cause.

    I hope you find some answers. It can feel hopeless at times. Just know that you're not alone with chronic pain. If your doctor or neurologist doesn't seem to care then you may need to move on. I've seen 3-4 neurologists before finding one I actually liked and who gave a flip about how I was feeling and functioning.

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