Help with pain medication

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I've been recently diagnosed with cm1 and after years and years of my doctor thinking I was exaggerating I've finally got an answer. The specialist have prescribed me amitriptyline for the headaches but it is useless and makes me very groggy although doesn't help with sleep. My doctor still is only prescribing me a low dose of co codamol and I'm in agony. I have a 5 year old so I can't be in bed or resting. Even moving around is excruciating and it isn't fair my daughter seeing me cry in pain. So I'm wondering what other people have been given to help with the pain. I'm waiting on an appointment with a neurosurgeon so it's a waiting game now.

Thanks I'll be patiently waiting on a reply x

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8 Replies

  • Posted

    Hi,

    I had surgery in Oct 2014. I took similar meds with no relief. I wish like so many I could say a special word and this pain would go away. Some people have had the surgery and the pain went away. I hope you are fortunate. Let us hear how things go.

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    • Posted

      Hi apple62 I had decompression surgery in November last year ad slowly recovering but they are now wondering if I have hydrocephalus cos all my old suppliers new ones have come back so wsiting for follow up mri. Have you heard of chiari support uk I am one if the admin team and it's tun by Karen Kerr. The group is fantastic for anyone who has been diagnosed or recovering or living with chiari. Look the site up its really friendly and fun too x jaquie clark x

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  • Posted

    Hi there I had decompression surgery following a a diagnosis of chiari malformation. My gp at that point only gave me co codomal it I have been on amitriptlyne following surgery and hated it. Gp are very reluctant to give out anything stronger. I know exactly how you are feeling it takes long enough for you to believed. My advice to you is to get your gp to chase your neuro surgeon referral I guess you have had a ct scan to identify the chiari. You will also be required to have an mri. You may be sent to a neurologist first to discuss your opinions especially around medication. Mat I also suggest that if you are on facebook you search for chiari support uk it is a closed group and a great source of support and inforamation I am one of the admin but if you request to join anyone from the admin team will add you Karen Kerr set up the site to help people like use cos ot is a very lonely world having chiari malformation. The site us so friendly and will help you through the next stage of your life. Till then take codine and paracetamol alterntatively it won't top the pain but ot may help a little have you asked about tramadol I take this and yes was a little spaced out at first but thst soon styles the difficulty there is you cant dive till the dr sas your safe to. Seriously though search chiari support uk and you will never be alone and can ask as many questions as you like

    Take care jaquie clark x

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    • Posted

      Thanks for the reply. I have seen a nuerologist and have had my mri just waiting to see the surgeon. I will ask to join the group now thank you. X
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  • Posted

    Hi Orlaith,

    I've been on Amitriptyline for years, it does take about a month to really get into your system and start working. I  am also prescribed very high doses of co-codamol and ibuprofen for pain control (I have had decompression surgery).

    You will probably have surgery and for me it helped enormously with the head pain but I still get it sometimes plus other related pain. I find that if I take the prescribed dose of all three medications just before bed time, I get a reasonable nights sleep so can cope through the next day without any meds until bed time again. It does make me sleepy but I will still wake up if needed (my son was just a year old when I had surgery so I had to get up in the night). Take care, I hope your appointment with your ns comes through soon.

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    • Posted

      Thanks for your response. I've been on the amitriptyline for around 6 weeks with nour relief if anything the pain is worse. I am only being prescribed co codamol 15 / 500. I think that the doctor thinks I'm just looking medication to get high because I'm in my 20s but I just want the pain away. The nuerologist prescribed the amitriptyline and even then the doctor didn't want to give me them rang me and said as much. It's in the morning I feel the after effects of the tablets trying to get the child ready for school and I'm exhausted xx

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  • Posted

    Hi there,

    this message to eveery one as well - please try to write it dawn how you feel - when you see your Health care professionals share with them - express about your condition, put yourself into their position - as well as put themselves in your positions, explain it to them by utilising: F-E-F-H (Fact-EXPRESS- FEEL-How):

    1. The FACT that your condition is horrendous...etc..etc

    2.You had EXPRESS previously about this....and still have not found any solution

    3.You FEEL that no one understand or sharing about your condition..you understand how busy they are, still they have a duty to loook after their patients by supporting them to their best ability to improve the QOL (QUaity Of Life) of their patients

    4.HOW can you help them to help you AS A P....

    Those terms I have used it myself.and guess what: all of my helath care porfessionals were really fantastic..ALL OF THEM.., 

    I suppose if you are incharged of your own health and proactive to read and learn about your condition (watch you tube, contacting Ann Conroy Trust, joining this website) then at least you learn about something..

    Be assertive..if you can manage by medication carry on doing it - surgery should be the last option - I tried for 2 years ...but in the end, I could not be managed by the drugs, so surgery .there I went..and when I woke up from my decompression  the pain was gone, I am still under recovery period (8 months ago) still not driving - still not back to work (at the nd of the day:HEALTH is very important ...!!!) the issue with lots of chiarians..they go back to their normal life so soon..I will listen to my helath care professionals..minimum 18 months to be able to go back to 90% .I change my life style - do yoga each day at home (10 minutes) or walking...physio..massage...so slowly ..slowly I am getting better - I do not have any drug anymore...I put on weight bcause previously I have: Topiramate, Gabapentin, Tramadol, MAgnesium SprAY..YOU NAMED IT..BUT THEY DID NOT HELP ME .INSTEAD I PUT ON 3 STONES..I AM TRYING TO LOOSE IT NOW..BUT BELIEVE ME..you will get better..

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  • Posted

    Hi totally understand how you feel I have cm 1 . I have tried most pain relief and only one that helped is co cocodaml 30/500

    4 hourly

    The main help I have found until I agre to surgery is to avoid triggers , bending , taking things gently etc

    Sorry not much help but thsts how I m dealing with it , vile condition thst it is

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