Almost 2 years and its only gotten worse.

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Hello everyone. I was diagnosed with this condition over a year ago and it just keep getting worse. I was recently at the hospital in January and i was told my condition has got worse. I'm due back in June for a scan and I'm absolutely terrified!

​This has been one of the hardest things I've dealt with. My headaches have gotten more painful and intense, I get nose bleeds and pass out, I feel really sick and dizzy and its now causing problems with my sleep and college work.

I've been given several painkillers over the almost 2 years I've had Chairi but nothing is working.

​Does anyone have any advice on how to cope with the pain or just any advice at all ? I would be very grateful, thank you.

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  • Posted

    Hi, I really feel for you, I suffered for years and tablets didn't even touch the explosive head pain in the end. I had decompression surgery over a year ago and the symptoms are less, but I still have some, but I'm not too bad, as they say surgery is to prevent the condition getting worse. Have they suggested surgery.
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    • Posted

      Hi helen thanks for the reply! They just keep recommending scans and the problem is I'm claustrophobic so the scan really freaks me out. However i recently found out from my doctor i can play muisc inside the machine which i wasn't told by the hospital so that's made me feel more comfortable. I'm due back at the hospital in June for a scan so i assume they will talk about surgery then. But surgery has only been mentioned once and that's when i first got diagnosed.

      How was the surgery if you dont mind me asking ? I'm really scared about having it done.

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    • Posted

      I must be honest it wasn't nice recovering I suffered from lots of sickness and dizziness, but over the weeks it got better. Every one recovers different. I'm 61yrs, so I think a younger person may fair better. But i get up on a morning now and don't have the pounding I used to have. Hope they get you sorted.
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    • Posted

      How long did it take for you to recover ? I'm 19 and I'm at college and also make YouTube videos so I'm constantly busy. It's just a worry at how it will effect me.
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    • Posted

      Well I'm better for it and started part time work after retirement 2yr before.. It did take me 2 month before I felt really well. But my niece had a friend who had surgery and was back at uni in a month, so it's hard to say, it depends on what is going on and what they suggest. I had decompression surgery. I will say take your time and rest is important after surgery. I didn't know about this site when I had my surgery. I wish I had as I wasn't prepared really.
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    • Posted

      Thats brilliant, It's really helped my nerves talking to you. Would you say the surgery has helped overall ? You've been a fantastic help Helen you've made me feel a lot better about the entire thing.
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    • Posted

      Ah thank you, for me it has helped the head pain, but I have some dizziness which I didn't have before. From what I understand my condition wouldnt get any better at all without surgery to relieve the pressure. I still have numbness on one side of head. And I had trouble with my speech for a few days after surgery due to the nerves. My husband was gutted it came back so quickly, haha just kidding. You will probably get more comments on here and everyone is helpful. But anything I can help with I will try to answer x
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    • Posted

      So the surgery is definitely worth while. I dont think my girlfriend would mind me being quiet for a couple of days haha. Thank you so much Helen you've been an amazing help!
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    • Posted

      Get as much info off your neurosurgeon on scans ect... and ask questions as to whether they think you will benefit from surgery. Good luck
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  • Posted

    Hi Stuart, Helen had replied to you, we are  in the same boat, I was diagnosed in 2014 - since then I was given so many anti depresant and also pain killer but none of them are working - except topiramex that really help me a night time that I was not collapse as much as I used to be.., but the supplements that I take daily such as; grape seeds extract, omega 3 and also daily rubbing of magnesium oil each night has heped me a lot..and I stoped with all my medication..I wasn't keen to be operated..until I can't put up with mypain..and also reading in so many website such as this one..and learning from lots of patients such as helen, yeltzer..AND OTHERS WHO WERE GETTING BETTER DECOMPRESSION finally,, I took my NS advice..I am now waiting for my decompression..as my pain getting worse..not only that..is effecting my balance..my walking..my right body is just not right..also my concentration is not fully comprehend like i used to be..so..every one is different..but now..I really can't wait to have this operation..the pain is just unberabe..but we have to be positive..as its not the end of the world..we can get better after decompression..the goal of the operation is to clear the obstruction of the CFS..so that we are not getting this horrendous pain..also stop for getting even worse..so just be positive..make sure you read about your condition..ask so manu question..get 2nd opinion if need be...we all here will help each other just to share our experience... 
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    • Posted

      Hello thank you so much for your reply. It's making me feel so much better talking to people that are going through the same thing. I had no idea about any of those supplements or magnesium oil. I am really grateful that i found this website.Talking to you and Helen has also helped me feel a little more comfortable about getting surgery. It's also helping me understand my condition more. Thank you so much for the advice!
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  • Posted

    Hi Stuart, you have been given some great advice already.....I was diagnosed 7years ago and as the years went by my symptoms worsened and became severe........ I had a very successful decompression surgery in May last year. The recovery is rough, but SO worth it if the symptoms are ruining your quality of life..... I had terrible headaches when I laughed, coughed, sneezed, bent down, stood up, horrendous in the end..... It is big surgery so be prepared, ask lots of questions.....Pain meds didn't work for me either, as previously mentioned in other posts it is the CSF blockage that gives you the classic Chiari 'valsalva headaches'......my pain has gone and I feel very fortunate that the NHS took such great care in helping me get my quality of life back by having my op, it is amazing how they can operate on our wonderful big brains! Ha ha.......being positive is really important too and, trust me, you MUST rest after the op, everyone try's to do too much on a good day and puts themselves days back in the recovery.....lots of tlc is in order!....you mentioned you make YouTube videos......I couldn't look at a screen for at least 3 weeks, some patients were texting hours after the op, everyone recoveries differently!!.....hope this helps a bit.... Good luck 😷
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    • Posted

      Hello Hayley that's the exact same way my headaches are just now i feel like i can't do anything without one coming on. That's brilliant your surgery was successful! Hearing everyone's stories is slowly making me feel more confident about the surgery. Hopefully when i get my scan in June they can determine the best option for me. When it come's to resting i probably wont get a choice because my mum and my girlfriend will be keeping a constant eye on me haha. Who knew having a big brain could cause this many problems haha. Thank you so much for sharing your success story with me it's helped my confidence a little and I'm very grateful for that. All this advice and help will also help my mum and girlfriend get a better understanding too. Thank you so much!
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  • Posted

    Your so welcome, having been there myself, I am a mum of 3, I was so scared, but to know there is a surgery available to help the headaches, by giving the brain more room and stopping any further progression of symptoms, we must see ourselves as fortunate....my only other advice is to make absolutely sure you do your 'homework' on seeing a nuerosurgeon that specialises in Chiari, it is really important.

    The Ann Conroy Trust website has excellent information, worth a read if you haven't come across it yet.....glad you have 2 ladies to look after you if you decide to go for the surgery....have you had a full scan of your spine? Or just brain MRI? 🤕

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    • Posted

      Thank you I'll go give that a look just now. I think I've only had a brain MRI I think when i go back in June I'll be getting the scan of my spine but i have no idea. They kep changing my specialist so it's hard to kep track.
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