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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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