budd-chiari

hi, i was diagnosed with budd-chiari in june 2012, went through a really bad 7 months, but stable now.i had tips procedure done in sept 2012 and feel so much better now. im on warfarin for life but only problem i have now is i cant sleep at all at night, my legs feel like heavy weights, nobody knows what is causing it. im sure i would feel so much better if i could just sleep .

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  • Hi Lisa - Roxy

    Like you, I was diagnosed with Budd - Chiari, in my case in 1998. It was only resolved last April by a liver transplant. Until I accessed this site, i had not spoken to anyone who shared my condition! So, I just want to let you know that there are people ' out there ' who know the trials and tribulations of it.

    Regarding your sleeping pattern, I had the same issues between diagnosis and the first mesa-caval shunt in 1999. With me it was constant spasms in my legs that kept me awake. A hypnotherapist ( yes, it got that bad ! ) was convinced that it was due to the trauma I experienced when waking up on the table during a TIPS procedure ( which was unsuccessful in my case ). I know now that the symptoms were due to the liver pressure that the shunt corrected. The lack of sleep can lead to some unpleasant thoughts and feelings that can not be just 'managed in my experience.

    I wonder, do the symptoms go away when your legs are covered in water, such as in the bath? If so, would aqua cream help? It's great that you feel so much better, but 'not knowing the cause' tells me that you need to be seen at Consultant level to find out more and get answers.

    All the best,

    Nick

  • hi nick, i have told doctor and consultant about this many times, they just say they dont know whats causing it. im off to see doctor tomorrow and got to see consultant at birmingham on 13th march so will mention it again. its driving me mad !! ive also been to see a hypnotherapist for my sleeping. only seen him once but seeing him again on wednesday, i will try aqua cream, thanks again

    lisa

  • Dear lisa-roxy,

    So sorry to learn that you are not sleeping well at night due to your 'heavy legs' - it must be so frustrating for you, to say the least.

    Nick has provided you with some good advice, in that you should return to your Consultant as soon as an appointment can be arranged , to discuss your symptoms. Your disturbed sleep needs to be nipped in the bud if possible. In the meantime, please speak to your GP for advice. You may also want to investigate some more 'natural' ways to help you sleep, and maybe applying some hot (or cold?) water bottles to your legs at night may alleviate the symptoms. Have you tried putting a couple of pillows under your feet to elevate your legs, to see if that helps at all?

    I hope you manage to see your Consultant very soon.

    All good wishes to you, and please feel free to email me directly at: sarah.tattersall@britishlivertrust.org.uk

    Kind regards,

    SarahTattersall

    Patient Enquiry Officer

    British Liver Trust

  • hi sarah, thanks for replying.

    i shall try hot and cold water bottles, never thought of that.

    i do use pillows under my legs when i sleep but not working very well.

    will be speaking to my doctor again tomorrow and seeing consultant in birmingham on march 13th so will tell them again !!

    thanks again

    lisa

  • Hi, I had this problem in May, just before I was diagnosed. My consultants told me that it was a combination of swelling (ascites) and blood pressure. My problem went away when I slept with my legs almost vertically above me. However, I know that's quite uncomfortable generally. The only other solution I found was wearing compression leggings- like the ones runners wear. Maybe this will help.

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