Chiari type 1, under care of neurologist, not responding to pain meds

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Can't sleep and I have my follow up appointment tomorrow morning. Any help or advice would be greatly appreciated.

I am a 30 year old female. I've had headaches from a very young age (16 ish ) and at the age of 22 I was diagnosed with nocturnal teeth grinding. The headaches were terrible. They would come and go as they please but they would go.

4 years ago I noticed that the headaches wouldn't go and was there 24 hours a day, 7 days a week (and it had been that way for the last 4 years). I also had spells of dizziness, general feeling of malaise, tingling feet (which has now proceeded to include hands and face as of last year), increasing unsteadiness, tinnitus, blurry and double vision, difficulty swallowing, extreme exhaustion, losing my hand coordination and feeling like my head was stuck inside a cloud or a fish bowl. I've also had insomnia since I was a teenager. The headaches are the worst bit of this. Its constant. It sometimes gets worse (worse on coughing, laughing, being upset, exercise, going up the stairs, bending down to open cupboards, sweeping the floor, running for the bus and sometimes worse for no apparent reason), sometimes it's worse on waking up. It doesn't feel better when I stand up, or lie down. There was nothing that would make it better. Sometimes this worsening would last for hours or days. I did not have any migraine symptoms (not affect light, sound, no aura, not triggered by foods ). Even at the best, the heads would be about a 5-6 on the pain scale.

The headache itself varies and I can't always pinpoint it. The pain varies. It can be anything to sharp shooting pain, to a a dull ache to an intense ache to a stabbing pain. Sometimes it feels like someone has smashed my head with a baseball bat. It causes the area around my eyes to hurt too. Sometimes when it's so bad I just want to crawl in a hole and not wake up.

I was sent to neurology who told me there was nothing wrong with me and that I had a migraine and it was the teeth grinding that caused it. They discharging me after a 6 mins appointment. I went back to my teeth grinding maxfax surgeon, who said it didn't sound like it was the teeth grinding. He referred me on to the pain clinic who decided I was depressed and after 2 sessions with the psychiatrist I decided not to go back. He was adamant that it was depression causing the pain and didn't actually want to listen to what I was saying. I also tried hypnosis. Since that I have been round and round the hospital. I saw everyone from neurology, to rheumatology to haematology. I even spent a night in hospital because of the severity of the pain ( I was discharged the next morning with the diagnosis of a migraine with migrane medications). I took the medications which I did not respond to. And I have been to emergency room on more than a few occasions.

I have been trialled on amitriptyline, topiramate, gabapebtin, propanalol, pregabalin, mirtazapine. Nothing had helped the headache in the slightest way. My last appointment was with neurology (I was re referred due to the persistence of my gp) last summer where they told me they were surprised I hadn't responded to any medications and basically told me not to come back as "there was nothing the department could offer me". They mentioned a headache specialist neurologist at a different city and told me to try to see him. My gp was lovely and sent me to him following which I was diagnosed with an 8mm chiari type 1.

There was no obstructions, no syringomyelia and the lumbar puncture was normal at 19. He wanted me to trial amitriptyline again but at 70 mg a day for 3 my months. Which I did. But I've had no relief. The headaches are just as bad. The amitriptyline did help with the tingling feet, hands and face.

Normal painkillers like paracetamol and nsaids don't help at all. Opiods make me feel sick and also don't help with the pain. Indomethacin sometimes help (on rare occasions). On a daily basis i don't take any pain killers.

I also had botox in my cheeks to reduce the teeth grinding just to make sure that the teeth grinding was not contributing to the headaches. That was 4 weeks ago and the headaches are the same while the teeth grinding has reduced drastically.

I have my follow up tomorrow to review how the amitriptyline has been and I'm just at the end of my wits because I just don't know anymore. Has any one got any advice?

Should I ask to be referred to a neurosurgeon despite having no obstructions and no syringomyelia?

Does anyone have a similar headache where the pain is just 24 hours? What has helped? I'm willing to try anything at this point.

It interferes with my life, to the point that I don't go to meet people most of the time because the pain is so bad, and I am an extrovert and when I'm in pain I quiten down and then people get really concerned as to why I'm being different. I don't really like sympathy so I just choose to avoid the situations if I don't feel like I can carry on being the usual me.

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  • Posted

    OMG, the level of incompetence is simply incredible!!!  

    I continually hear about the obtuse viewpoint of these Neurologists and Neurosurgeons who IGNORE Chairi symptoms and diagnose migraines, depression, etc. NEVER, EVER let one of these doctors blame your symptoms on depression until they have FULLY INVESTIGATED!!!!   If you have an MRI which shows you have CHIARI 1, and it extends 8 CM, [u]you need decompression surgery!!!  [/u]Many of these Doctors haven't kept up on diseases and since Chiari is very rare (It's on the website for RARE DISORDERS) they don't seem to have a clue what they are doing!! Where do you live? We need to start keeping track of where the stupid doctors are located so you can AVOID THEM!!!!  

    A) Get a different doctor.  Someone meets with you 6 minutes? I would refuse to pay them and report them to their superior. Believe it or not, These docs are NOT GODS, although they think they are and they are ACCOUNTABLE to whoever is in charge. If you call up and complain to the OFFICE MANAGER or whoever directs the clinic, you can get in faster!!!!   Get in to a Neurosurgeon and get surgery scheduled!!!!!! You shouldn't have to live with all of that pain!!!  An 8 mm herniation is plenty enough to make you in need of surgery and most of your docs are QUACKS!!!  

    B) Get an MR CISTERNOGRAM. This is a Magnetic Resonance Cisternogram, Not a CT Togography where the inject Dye. It is also called a Cine MRI.   The Cine MRI would show if there is Cerebral Spinal Fluid (CSF)  blockage. Given your symptoms, I would imagine you do have CSF blockage and they are pretty inept to not have referred you for this test.   If you have CSF blockage, you will have to have Decompression Surgery to fix it.

    ****Get copies of all test results so you can research everything. 

    C) YOU HAVE CHIARI- THIS has been confirmed by the one MRI!! IT DOES NOT SHOW IF THERE IS AN OBSTRUCTION!!! THESE DOCTORS ARE IDIOTS. MRI's are FLAT!! There is no way to tell if fluid is moving. That is why you need the CINE MRI. 

    If you think about this logically: You have a large brain and the skull is too small. So part of the brain is being pushed against the brain stem and part is being squeezed through the foramen magnum which is the hole in the skull where the spinal cord comes in. If your brain is going through the hole, that displaces fluid..Cerebral Spinal Fluid.  So, since your brain is being squished, that can account for a whole slew of symptoms!! 

    Here is the Common Symptom List:  

    Severe Headache and Neck Pain---Most Common

    Dizziness

    Vertigo

    Disequilibrium

    Visual disturbances

    Ringing in the ears

    Difficulty swallowing

    Palpitations

    Sleep apnea

    Muscle weakness

    Impaired fine motor skills

    Pulsatile Tinnitus

    Chronic fatigue

    Painful tingling of the hands and feet

    Scoliosis

    Numbness in extremities

    Memory loss

    Back pain

    Nausea

    Gag reflex issues

    Neck pain

    D)  YOU can do a search and find more information about surgery,  but I can't post a link to it, as they will delete it. I would suggest searching for anything titled Chiari Decompression Surgery. There are several sites out there. They describe the surgery.  They also have videos. 

    E) I had surgery June 2. It is a 4-5 hour surgery. They lay you flat on your stomach and have your head positioned through a hole. They will make a slit in the back of your head, pull aside muscle and tissue and then on the bone, they cut out a small area. This is to open up MORE room for the brain. They may also cut off the top of the cervical vertabrae. My Neurosurgeon also cauterized the tonsils so they would shrink up into the skull. Then they attach a dura patch to the hole where the bone was and lay everything else back down. Post surgery, I was on lots of painkillers and remember limited amount. I was in the hospital 4 1/2 days. After leaving the hospital, you will be weaned off the painkillers and will be able to go to the bathroom- I also had a walker. Your leg muscles get really shaky and you have to strengthen them back. The worst thing I had was nausea from the painkillers. I got some nausea meds for that. Then you just REST and REST and slowly build strength back up. I took Hydrocodeine for pain and had ice packs on my scar. I was able to go fly on a plane three weeks later.

    You aren't allowed to lift more than 5 pounds for several weeks and will probably need help with kids, if you have any, depending on what age they are. 

    F) After surgery, you will likely go back to see your NS in 5 weeks for a check up. After my surgery, I had vision back, balance back, dizziness gone, headaches gone. But you may have some residual effects which don't go away- which makes sense since your brain was squished. 

    Anyway- Take my advice and get a different Neurosurgeon since the one you have sounds awful. Also, CALL the person in charge of the DOCTOR OFFICES and complain. ALSO PESTER PESTER PESTER!!!  I had to pester to get my MRI Cine scheduled and Pester to get my Dr. Appt Scheduled and PESTER to get my surgery Scheduled!!! 

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    • Posted

      Thank you for your reply. I'm the the UK and the health system is slightly different here. While I appreciate that it's free, sometimes you do wonder whether doctors would care more if they weren't so overworking and underpaid and overstretched. 5 mins appointments are quite common here actually 😂

      I'm going to go to my review now, and see what is being suggested. I'll keep you updated. If nothing positive comes out of today then I will pester my gp to send me to the neurosurgery team.

      When I was first told about the chiari a few months ago, I googled it and when I read about it I felt that this was everything I was experiencing and some of the symptoms that I didn't think we're significant were all explained by the chiari.

      And thank you for the surgery overview. It's helpful to know what to expect if that becomes an option.

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  • Posted

    Hello Kayennat,

    I am pretty much having all your symptoms. Only I don't know if you are experiencing stiffness in the right neck, I can't turn my neck, I feel like I have permanent whiplash. Also, I will sometime have body spasams that mimic siezures. Which I am taking Topomax and Imetrix. I was taking Amitrypline for 2 years but it was because of my IBS issues. My symptoms very everyday. It's really tough in the mornings. I have anxiety of just thinking about how I am going to feel the next day. My primary doctor prescribed me Valium to help me relax and sleep. Doesn't do help me at all. Last night I got 3 hours of sleep. I'm tired. This has just started for us. I think about how many people have been living in pain with this condition. I like to add that in 1999 I almost died from an appendix rupture. I went into septic shock, while in surgery one lung colasped and other filled with fluid. I was in ICU for 7 days fighting for my life. I have a 10 inch scar on my stomach and the thought of having brain surgery and hospitals terrifies me. I also like to add that I don't like to attract sympathy too. I have turned into a homebody now. I don't like people staring at me and wondering why I am not walking straight or my head is tilted to the side. These days I am feeling really insecure. I'm normally an outgoing person.

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    • Posted

      Thank you for your reply. I have major neck stiffness on my both side. I've had 2 hours of sleep and now I'm having to get out of bed to travel for 2 hours for my neurology appointment. I'm in the UK and rescheduling appointments can mean waiting another 3-4 months. So I'm just going to suck it up today.

      What was worse about dealing with people was that I never knew what to say when they asked me what was wrong? I would just say a headache (bear in mind that the doctors practically told me I was making it up for 4 years) and then people would start with the headache advice (which I know came from a good place but it was the most unhelpful things like eat healthier, exercise more, get out of house more, don't think about it, have you tried this tablet) and the answer is I have tried everything possible. I am glad I stuck to pestering the doctors even though I questioned my own sanity constantly. Having the diagnosis made everything I was feeling real and now I know I wasn't making it up if that makes sense? So even though the symptoms are no better than before, having a label on it makes me know I'm not a crazy hypochondriac.

      Changing into a different person is scary. I sometimes don't know who I am anymore. I don't recognise the person I see staring back at me in the mirror. It's just easier to not have to explain that to other people.

      The change in

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    • Posted

      Hi there, I had decompession due to the symptom such as yours, I destested surgery and duggs, however after the pain was so unbearable, I have no choice for changing my mind and have the surgery. THE BEST THING i have done. I am now free of drugs, start getting my life back, it will take time to heal (I am on my 4th month pot surgery) Believe me... there is something you should appeciate once you have done your surgery like I do...I cherish each day of my life now, as remembering the worse health of my life prior my surgery, even though my back still feel pain and ache ..its something that I have to be patience. BE POSITIVE !!!!, there is a light at the end of the tunnel. I probably the luckiest and successful one, so do you....make sure you have the wright NS. Good Luck..just remember..lots of them have had successful decompression do not join the club any omre, which is a shame...they could share their success story to you all ...
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    • Posted

      Sorry to hear about your situation!! Don't let Chiari take over your life! Be a Chiari Warrior!!!! Today I decided I was tired of being tired and I got on my bike and rode downtown to the pastry shop. No crashes- I took it slow, but they didn't have the pastry I wanted so that was a huge disappointment!!! What I'm trying to say is that if you can rally yourself and get out and be rebellious, it may make you feel better!!!

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    • Posted

      Awe thank you for that. I can occasionally manage to do somewhat like that, it's few and far in between. I'm just worried that I won't be able to hold down a regular job and do normal people stuff. I've been feeling drunk when I walk avoid sometimes and have such slurry speech. I'm 30 and I feel like everything is over in the way that I expected and wanted. Maybe it's time to have new expectations. 😫

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    • Posted

      Awe thank you. It's nice to hear of people who's had positions outcome. Everything felt like such doom and gloom! I've been referred to the chiari neurology now. I'm in the UK and unless you're dying then referrals take months because our health services are so overstretched. I'm going to be getting botox injections in my head soon to see if that helps while waiting for neurosurgery to see me.

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  • Posted

    Follow up. In my review I saw a new registrar and not the consultant neurologist. She was awful. She hadn't read my notes, she didn't know what medications I've had, she made me tell her my whole story again and after which she said I think it's a migrane. I was so annoyed, angry and frustrated. It was like she hears nothing that I said. I told her I disagreed and it was most definitely the chiari. She replied she doesn't think it is and when I asked why she has that opinion she mumbled and said it doesn't really fit into the chiari pattern. She had call in the neurological consultant who is such a lovely guy. One of the best doctors I've met. For reference it is Dr Brendan Davies at Royal Stoke Hospital. I've seen him twice before and he made the chiari diagnosis. He listened to me and that in itself was a change from all of the other neurologists who had seen me before.

    He suggested to trial botox injections in my head while he refers me to a chiari neurosurgeon. Which i think was a fair plan. So now need to wait for those 2 things.

    In the meantime since coming off the amitriptyline I've noticed how drunk I feel sometimes with slurred speech and slowed brain function. And my travel sickness is awful (I feel travel sickness sometimes even if I'm not travelling. Does anyone else feel that????)

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    • Posted

      If you have an MRI stating you have Chiari, I can't figure out why these doctors are so stubbornly against that diagnosis!! Botox!?!? I've taken Amitryptiline in the past but I don't recall any problems coming off of it. Venlafaxine and Nortryptiline, on the other hand- don't go off them cold turkey! I stopped taking them after I got home from surgery as everything made me feel nauseous!! I had to take anti-nausea dissolvable pill to keep the nausea down. You can have some really bad reActions coming off antidepressants!!! Which they never tell you it's an antidepressant- I was taking the Ven-- for hot flashes and the Nortryp for neuralgia in my head.

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    • Posted

      Hah. I did go off cold turkey. I couldn't be bothered with it anymore. I've had really bad withdrawal symptoms but to be honest no more worse than what i usually deal with 😂

      The registrar doctor, sigh, she was awful. Didn't want to listen to what I was saying. And she was telling me to try migrane medications that I've tried within the last year.

      I don't think doctors know what to do with this chiari patients? She told me it was ONLY 8 MM so not that big. I gave her a few dirty looks following which she literally ran out of the door and brought in the consultant.

      The consultant wants to try the botox Because he said he feels like I have nore than one type of headache going on (a chiari one and a non chiari one). Which seems like a reasonable thought. S

      Because I'm in the UK referrals to other departments can take months (3-5) if it's not urgent, so I'm happy to give the botox a go while waiting for neurosurgery to call me in.

      I'm surprised they don't tell you that it's an antidepressant. My doctors were very upfront about it. But I do find the some doctors don't like to label medications like that because some patients are less likely to try a medication that's an antidepressant for say neuralgia (which may or may not be beneficial).

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    • Posted

      When they put me on Nortyptyline for neuralgia, I called them up re it being an antidepressant. They just said it is used for other things. Although, if anyone needs an antidepressant, it would be we Chiarians!!
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