Newbie needing advice!

Hi everyone,

This looks like a really friendly community. I’m here to really ask for some advice please bear with me I will try to keep the story short! My Neurologist thinks I have “atypical” chronic migraine but due to Chiari like features he’s referred me to neurosurgery for a second opinion. This was months ago I’m still waiting.

In 2018 I developed a chronic headache, it lasted from November 17th through to April ish. I distinctly remember the day it started, it was my engagement party! There was no precipitating event although I was hosting a party that day so higher than normal stress levels. I had an MRI before it faded and Chiari Type 3mm was an incidental finding. Thought nothing of it, infact, at the time they didn’t even tell me about it!

Flash forward to 2021 and the date is July 26th. I get a migraine (suffered with them a couple times a year my whole life) and then once the migraine faded I was left with chronic headache again. I also noticed in the weeks leading up to it that I was getting pain but it was super mild and it would go away but there was that pre-cursor to it coming on and that was several weeks before the day it became permanent. I had another MRI and it was identical to before (3mm Chiari, but everything else is fine.)

So I wake up, I have a headache. It’s with me 24.7 in varying intensity. It seems to be better if I lie in bed as soon as I go vertical and move around it increases in intensity immediately. Sometimes i have a few seconds where it doesn’t hurt and then I feel it “go” in my temple and the pain starts.

So the question is how can I bet certain whether or not my headache is Chiari related?

Features of the headache:

  • I get pain on my forehead and temple. It feels like pressure pain OR it burns. Not at the same time. It also moves around. The pain is exclusively on the left side of my head.

  • I get eyeball pain, sometimes my only pain is my eyeball.

  • The pain intensifies when I do Valsalva like manoeuvres such as straining but if I do the Valsalva manoeuvre it doesn’t really change it.

  • I have no problem bending down which I have read is common with Chiari

  • If I shout it hurts and increases the pain/pressure feeling

  • If I throw my head around it increases the pain, particularly afterwards it will burn for a long time. Yesterday for example something made me laugh out loud I snapped my head back laughing and I felt pain increase and afterwards it was burning for a long time. I was rather stupidly demonstrating to the wife what hurts in bed (throwing my head around dramatically, I didn’t say I was smart!) and afterwards it was burning very strong as I lay there. Pondering life. :man_shrugging:

  • I feel pretty rubbish most of the time.

  • Stress is a huge trigger, generally being stressed = more pain

  • Painkillers take the edge off but don’t do anything for it (even codeine doesn’t dull it very much)

  • Sometimes it’ll hurt every step i take like the thudding of the feet increases the pain in my head with each footstep, other times it’s not impacted by my movement. The baseline headache feels the same though like I can’t tell “oh today i can’t walk without being in pain” but others every step I take jarrs the pain

Ok I have stop somewhere thank you so much for allowing me to write all this here and anyone that has reading this thank you so much. My questions would be:

  1. Has anyone similar experience to the above and had it confirmed as Chiari ?
  2. Has anyone had similar experience to above and had surgery for Chiari and it has improved?
  3. How can I eliminate / confirm Chiari as the source of my headache?
  4. Is sudden onset i.e. picking a specific date ever associated with Chiari?

Like many of you are surely feeling the same I am at my wits end. I can’t deal with it anymore (I of course can because I have no choice) but I feel like that. I’m in pain 24/7 and everything I’ve tried so far doesn’t seem to work. I worry for my mental health how long can I stay positive about it? I’ve had some tough times coming to terms with my chronic pain. The longer it goes on the more my anxiety about my 3mm Chiari increases as a source of the pain. IF it is that, I need to tackle it!

Thanks again sorry I wrote so much. I have no one in my shoes to talk to about this so thank you to anyone reading and replying :slight_smile:

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Can I be blatantly straight? You can’t be certain. Sorry, that may sound a bit rude, but it’s true.
I say this because, some dr’s will say if the tonsil is less than ‘x’ mm long you will not be symptomatic, but you can read through some people’s experiences where they’ve incidentally found a very large tonsil with minimal symptoms and yet others who report a small tonsil can have no end of issues.

Trying to pinpoint cause vs effect in regard to headaches is like trying to nail jello to the wall. I know because I’ve tried. I’d had a craniotomy and the dr’s view was ‘All fixed’, but it wasn’t. So I went looking for answers and for every Dr who thought they knew the answer, there was another ready with another diagnosis. It really can be an endless journey. Headaches can be notorious for having (so called) “unknown causes”. There was lots of 'Well, it could be… or ‘It might be…’ and enough medication to sink a battleship but I never have been able to pinpoint that cause vs effect.

From my experience, trying to define ‘headaches’ can be VERY ambiguous. Some people have set symptoms with repeated prodromes (Prior signs) and Postdromes (after effects), but then some can have variable symptoms and signs, some can have no signs. A bit like a kick to the back of the head from out of nowhere. I’ve had medicos try to measure my pain out of 10 (just after surgery I said 15, just WOW intense) the medicos thought I was exaggerating. The reality is that others can’t feel your pain, they can’t rate your pain, only you can but trying to express pain? I haven’t figured that out yet.

With neurology there is no ‘One-size-fits-all’, we’re all different.

Merl from the Modsupport Team

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Thanks for your response I don’t find it rude in fact I appreciate your candour! I’ve chased up my referral to Neurosurgery so I should get their opinion at some point in the distant future haha. I am interested in any experiences from anyone similar to mine, either Chiari impacts my headache or not but I can’t be the first to be diagnosed with “chronic migraine” but could be Chiari.

Just from the description of the head ache, it does not sound like the traditional Chiari headache (ie occipital pain). However, my experience with head pain goes farther than that. I too have been told I have atypical migraines. I get the impression that you get that label when your symptoms don’t fit into anything else but some label is needed so they can give you medication! I did not buy that so went on to other things. Please keep in mind that I had the occiput pain and surgery and went on to develop further head pain and strange symptoms.

The biggest thing that I found is that having Chiari caused me to hold and protect my neck to avoid further compression and symptoms triggered by head movements. This set up my neck, shoulder and upper back muscles with a lot of tension and muscle triggers. After surgery, I found a book titled “The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief” by Clair Davies. Buy the most recent edition as it has excellent symptom and condition groupings. This book is a lifesaver for anyone who has migraines, headaches, or weird symptoms where doctors do not know what is going on. Check out vision blurring and dizziness! I am not saying that muscle triggers are the cause of everything, but dealing with them sure helped out with a lot of symptoms.

WHile I would have liked to have had this book before surgery, Chiari is a continuing source of compression on the nervous system and other structures. You have weird things going on. Make sure the neurosurgeon’s office has your referral. Politely ask when a possible appointment would be, ask to be placed on the cancellation list. While you are waiting, it does not hurt to try muscle trigger work. Well, yes it can. Do not go crazy with it. Know that if you work an area and you get worse, that often indicates an area of concern that needs addressing but with more gentleness.

Chiari is a tough slog. Scaling back on activities was necessary on my part even though you end up not feeling productive. Good luck with navigating.


Ohh, you most definitely are not the first, and you won’t be the last. That title of “chronic migraine” in regard to ANY neurological condition is very, VERY common. In fact I’d almost call it the ‘default’ diagnosis. Could the cause be chiari? Well, yes it could. Could the cause be diet? Well, yes it could. It could be your posture, it could be work related, it could be related to ANYTHING. I have been given more diagnosis than I can count on my fingers (and toes). For many years I was told my pain was all ‘growing pains’ “Here, take a tablet…”, then it was all made out to be a psych issue, then came the “chronic migraine” diagnosis.

Some dr’s work on a A+B=C or Symptom A + Symptom B = Diagnosis C, but that’s way too simple. For me it’s more like A+B-CxD/E √F…and everyone of them is variable. If it was just A and B I could juggle those 2, manage around it all, but trying to keep 5-6 balls in the air at the same time… they’re all going to come crashing to the ground at some point, taking me with them.

There is no ‘set’ criteria for migraines, individual people’s symptoms can vary wildly. Some report light sensitivity, some don’t. Some report visual distortions, some don’t. Some report temperature fluctuations, some don’t and the list goes on. These variabilities can make the whole process of diagnosis a minefield to navigate. Some medicos use a set criteria for a migraine diagnosis. When reporting symptoms I’ve had medicos tell me directly "Well, that just can’t be happening…’ but it is, then been told ‘It can’t be that bad. You just have a low tolerance to pain…’ GGGrrrrrrr. What I have developed is a low tolerance to ‘know-it-all’ medicos, some of them have no clue how bad BAD can be. I use to call them ‘headaches’ but everybody gets headaches at some point in their lives. No, these aren’t just headaches, these are explosions of agony sent from the gates of hell. The type that drop you to your knees in a heartbeat. Some people have no clue such pain exists, I used to be one of them. Prior to my neurosurgical journey starting my girlfriend’s sister had severe headaches and (If I’m honest) I thought it was a “female issue”, Didn’t I get an education? Just WOW intense.

Could it be Chiari related? Yes it could. Could it be atypical chronic migraines? Yes it could. Could it be a combination of both. Yes it could. And this is what makes a clear neurological diagnosis difficult, it’s all brain related and for every patient the brain is wired differently. Little changes can have HUGE impacts for some and minimal impacts for another.

Merl from the Modsupport Team

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@mrbenn, Everything you just described is what I go through on a daily basis, I have Chiari Malformation 1, in Sept 2018 I had the decompression surgery at the University Hospital of Cleveland. It was a 3 month healing process for me and I was able to go back to work and things seemed so much better. I was getting my life back, then Oct of 2020 I started getting my symptoms back after 2 whole years of being pain free. My migraine, neck pain, dizziness, blurry vision, eyeball pain, ringing in my ears etc all came back. My neurosurgeon doesn’t think it’s anything to worry about, he said my MRIs are normal, I’ve seen my doctors since and they all blame it on severe panic disorder which I know is a major symptom of Chiari. I’m not typing this to scare you, every single person is different and I hope you will get well and maybe yours is just migraines. It’s just a very scary feeling. I do have good days though also. I know I’ll be ok, keep us updated on your symptoms. I believe you will be ok too. :relaxed::relaxed:

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Sounds like you recovery had similarities to mine. My neurosurgeon also said that MRI looked good and was good to go from his perspective. Unfortunately, my quality of life (pain and funny symptoms) did not agree. Muscle work and sensory processing work has helped enormously after doctors washed their hands of me. Headaches, neck pain, dizziness, and vision problems are now resolved and it was not just time and rest. Doctors did continue to insinuate that mental health was a problem though psychologists and neuropsychologists did not agree. On both sides doctors were saying I was fine when I was not. Finding the middle road with high quality physical therapy was my answer.


Aww thank you for your response I am trying to piece together all the possibilities :slight_smile: I’m sorry you’ve had to go through all that! May I please ask what your mm Chiari was if you don’t mind sharing? Mine is 3mm with no crowding. Although still waiting to have that confirmed by Neurosurgeon second opinion! I am really trying to piece together the puzzle here and make a informed decision if i am recommended for decompression surgery also :slight_smile:

I do suffer with anxiety I have been through two rounds of CBT (after my second therapist it’s been a lot better). I struggle with Health Anxiety due to the myriad of problems and scares I’ve had to face over the years!

I’m not sure on etiquette to reply to everyone separately but thank you all so much for your replies, please keep them coming they are so helpful for me.

Good morning my name is Roni Jo I have a Chiari Malformation also I was born with it all obviously. I’ve had 7D compressions and I had to have it or else I probably wouldn’t be walking right now. I used to faint and pass out at work when I was getting ready to get in my car when I was at home so they had to do something. They put a shunt in with the mechanical mechanism to regulate the amount of fluid that would go into my spine from my brain into my abdomen. They had to remove it and another surgery because they couldn’t regulate the flow of the spinal fluid. Now that I’m 60 I’m having issues with a lot of UTIs. So now we’re not sure what we’re going to do because the doctor said they can’t take the shunt out because of the way it was put in.

Not to backtrack but they didn’t even find my Chiari Malformation until I was in my 30s and I went into my family physicians office and I was crying that my head hurts so bad I couldn’t take it anymore so they sent me for an MRI when they compared to an MRI from 10 years prior they noticed that my curate was there they just never saw it before. I think they told me my key already was somewhere between 11 and a 12 in the protrusion and it was blocking majority of the spinal fluid that was going into my spine from my brain. Well I think that’s more than enough information at this point but if you have more questions I’m sure I can tell you I still go to the neurologist and the neurosurgeon the neurologist gives me shots of Botox in the back of my head and a couple in the front I have no feeling at all in the back of my head. I’ve had half of my teeth polled because they keep writing out of my head because of all the medicine I take. I would say be your own advocate because no one else is going to do it for you. Again talk to your neurosurgeon and your neurologist if you can get them in the same room together that would be my recommendation!

Oh I’m sorry let’s talk a little bit about medicine I take gabapentin, topamate, tiazadine, Ursodiol, I have a liver problem that I inherited from my grandmother and I take a lot of Advil and Tylenol which I’m not supposed to take I take Emgality once a month I take that shot I’ll give it to myself and I go to a chiropractor three days a week! Thank you Roni Abdella

@mrbenn - your story sounds similar to mine! I have suffered with migraines previously every now and again but then I had one which then left me with a chronic headache which didn’t disappear - after MRI scans they also found I had Chiari malformation. Following my appointment with the neurosurgeon, he advised to try and sort the ‘chronic migraine’ part out medically first to see if/how the symptoms changed, as the surgery for Chiari is not always the complete cure!:frowning:

Are you currently taking any medication? As small changes in medication can make big differences too - I have found even taking different brands of the same tablets make my head pain worse! Sounds crazy but I spoke to my neurologist and they told me that is how sensitive our heads can be!!