Sticky Blood-Hughes Syndrome Support

Spacing out with extreme tiredness and unable to keep eyes open

When my daughter's daily headache gets really awful she is spaced out, with extreme tiredness which makes her shut her eyes even when trying to do a task and a times her speech is affected - does anyone else have this. The headache is there every day and ebbs and flows with it;s intensity and horribleness, and yes we are off to St T's next week! Mary F

7 Replies

My headaches dramatically improved when I went onto Warfarin and got the dosage correct with the INR at about 3.5.


Hi mary i hope she gets better i get the tiredness and speech issues but that is all the time i get sever headaches but these come and go i hope someone can give you answers



hi mary it must be hard to be positive when every thing is against the things you are trying hard to do, i admire your stamina, persistence, and love for your family. when i make this swim, i hope you are there to dry me off. as this would be an honor , i have no idea how far you guys are apart. but boy wouldnt be a good thing for x-mas to share pics , {just a though], i dont know how every one else feels ? but i am looking at my new extended family !!!!! thanks an good nite to you all me


Hi Mary

Its difficult to watch your kids when they are hurting so much and feel so helpless to do anything to make them feel much better.

My husband suffers bad migraines and as far as we know does not have anything else (would be a big coincidence if he did!). He has the same sort of symptoms as your daughter which I think are very common with migraine.

If after your visit to Tommies it is decided that she does not have APS or anything related. Please contact me as I am treated by the worlds leading Consultant for Headaches and have got to know him very well due to a trial I did with him. (won't go into details here) He would be the perfect person to help with your daughters daily headaches as if just that, is what he is the expert in.


Thank you and everybody for your answers.... my other child had a migraine in such severity that it lasted 15 months and 4 days 24 7. with virtually no sleep and daily cyclical vomiting and black outs with temporary dead legs or arms.

I worked with Dr Cohen's magnesium advice and also other things...and I did shift it... it is now making a come back. However my daughter has other distinct markers... ie HSP when she was younger, also a small heart valve and murmur etc etc and blotchy when younger! I have read everything I can get my hands on, regarding migraines, plus studies done in children's hospitals around the world... also the City of London Migraine Clinic etc etc who were more than helpful. The food Hospital Channel 4 did a programme section on child with similar, but milder version of my son's.... following what I had already done with B complex - magnesium and other things, my own research backed up with nutritionist and medical approval for it...however... my conditions started like this. I feel it is more likely in my daughter than my son... but they need to be watched anyhow... and certainly not by the hospital in my own area!


I find that at times, I get very tired and it gets so bad at times, I just drop off, but notice that around 1.30pm, I need to have a nap. I try and do all the jobs in the morning and I do not take too much of my medication as find that some of the pills makes me spaced out. My rheumatologist back in June said that once on Warfarin, then I will get rid of these funny turns, but afraid not. When INRs too low I go wierd!!!!


I'm right there with you Mary! Tiredness, spaced out and foggy to state it lightly! Once pure exhaustion hits, I hit the bed and usually sleep for coutless hours. Normally the sleep gets me on track for awhile :)


You may also like...