Vascular Birthmarks Foundation Forum - View Single Post - Any members with vascular malformation from Ireland/UK?
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Old 10-16-2011, 10:14 PM
fiafo fiafo is offline
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Join Date: May 2010
Posts: 6
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Hi Kaykay,

Is your VM on your neck? I think that because of its location my VM is affected so much by everyday things.
It is always slightly swollen but it will swell out immediately if im talking (which i do with much enthusiasm.. i think if i wasnt so excitable my neck would have an easier time of it!!), it swells when im eating (particularly my jaw.. and i hate this because i like eating in company but feel self-conscious.. it feels like theres a golf ball sitting on my jaw), and it swells badly when im exercising, dancing, talking over loud music (i have difficulty doing this and my neck feels SO tight and sore, sometimes i have to give up and not talk on these occasions, the strain on my neck is too much. also my voice goes hoarse almost immediately.. i presume the VM is close to my voicebox??).
It also is so sore tight red and swollen when im angry, nervous or aggitated. And.. (the list goes on.. are you sorry you asked yet?!).. bending over to tie shoelaces etc, lying flat with no cushion/pillow is a complete no-no and so on.
its with me every minute of every day.. lets put it like that.
Oh, and Alcohol affects it alot and the next day i pay for it!

And to answer your question about getting up in the morning.. every morning is painful to a greater or lesser degree. at best im uncomfortable and feel heavy and stiff. at worst lifting my head of the pillow is agony and may take to mid morning for it to become bearable.

I think the hardest thing to deal with is that you can never predict what way it will go.. why is it that some days (very few, mind) its not too bad, and others its terrible.. i dont do anything wildly different. i know its very much linked into hormones, no doubt about it, but it seems to have a mind of its own. Its getting worse as the years go by.. i worry about times to come.

What sets your Vm off? Id be interested to hear. How do you manage it? Do you see a pattern in flare ups? I was emailed by a guy through this site who recommended cutting out sugar in the diet.. admittedly this i havent tried in the past (i have tried no alcohol etc) so im always excited at hearing new suggestions.

thanks, niamh
p.s forgot to say something positive!! I dont get fevers at all.
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