Sticky Blood-Hughes Syndrome Support

Hughes syndrome n migrains

i have hughes syndrome and very bad migrains makes me feel very unwell and weak, they last along time. how does it make you feel and how long does yours last.

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Mine vary very much, and so so do those regarding my children, sometime longer than two weeks! Other times improved. Mary F x

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i seem to go through stages of getting them not so bad then very very bad. keep getting these headaches all the time worry me, should i be worried, ive spoke to my doctor and he says their migrains.

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What treatment are you presently on. Migraines are a very important feature of Hughes generally improve a lot with adequate treatment. I take warfarin and mine were improved considerably.

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im only on warfrin and naproxen for mine, some times i just get pains in my temples and it aches ive been told by my doctor that this is also migrains.

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I still get severe headaches that will cause me to do doing nothing physical that day, and sometimes longer. They are currently getting longer I think. I think I get a precurser of fogginess, forgetfulness and confusion just before I am going to get a severe headache. For a few days, I get very mentally muddled and then WHAM the headache starts and I'm in for something different every time. I can't count on the courtesey of any kind of habitual thing so I can just plan on being down for a certain amount of time. It's always a unique surprise as is the severity. I am lucky that I have my own pain control. If it truly gets unbearable I can take Vicodin and combined with Fentanyl it will put me to sleep. Still, I then lose days, which have become way too precious to lose. My doctors would prefer I take Vicodin as a prophylactic twice a day, but it is a highly addictive drug and I am already addicted to Fentanyl for life. That's a lot of opiates. If I take Vicodin as a prophyllactic now, what will I have to do for pain at 65?and then 70? They almost imply I won't have to worry about it. But I worry about it.

Smiles and warm wishes,

CanaryDiamond

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i have a lot of migraines and they vary some i can go sleep n wake up the next day with it and can last up to a week or i can have them just a day but the doctor will only give me paracetamol which are no good because there not strong enough and dont get rid of the sickness

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I have constant headaches, daily and have had them for years now. Occasionally I get a headache free day and I get a glimpse of normality.

My head feels like it is going to explode, My hearing and balance is affected. Paracetamol does nothing but mixed with codeine I get some relief sometimes. The drs just shrug them off and are no help and the pharmacists give me a hard time every time I go in for the codeine.

So most days I get very little done and I feel like this is no life at all and no one will help!

I'm sure my DH thinks I'm just bludging as i look fine .... but I struggle to function.

When i first started on warfarin it seemed to help for a week or so but since my INR is constantly fluctuating it doesn't help any more.

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some times mine are not full blown headaches but just a pain in my temple with a burning sensation, is this also migrains or somthing else.It makes me feel very sick n gives me foggy memory and also vertigo with it. The headaches scare me alot incase their TIA'S.

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I'm amazed and appalled and stories of GPs handing out paracetamol or codeine for migraines. They're never going to touch a migraine!

I have sumatriptan and synflex on prescription. Synflex is actually quite an old-fashioned drug. It was given to me by a doctor in Malaysia when I came down with the mother of all migraines there and only narrowly escaped hospital. But the synflex worked. Sometimes I only need 1 tablet to stave off a migraine, sometimes I might need about 6 in a day. Sometimes I combine them with a sumatriptan if the synflex on its own isn't working.

Perhaps mentioning these drugs to those ignorant GPs?

Oh, and my migraines can last a day or several days.

Hope this helps ...

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Thanx for the info i will mention it to my doctor.

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Since about Christmas last year i've been plagued by the headaches. Migraines are intermittent but i can tell when things are progressing because my nose goes numb and i ger a disjointed visual. The pain sweeps under my left eye and i get quite nauseous. I don't have specific support from my GP for the symptoms of Hughes, they bumped me on to my local hospital who bumped me on to St Tho mas's. At the moment i am trying not to take anything for the headaches (other posts refer why) and Migraleve for the migraines but they dont really do that much. Waiting on next appointment outcomes before i do anything else. I hope you start to get some relief for your migraines soon.

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Thanx for the info that helps alot.

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DID I WRITE THIS???? Yes - they are awful. I have to take medication - IMITREX or RELPAX . I am also on Topamax & high blood pressure med to stablelize the vessel. Does help. Take Butterbur and B2 & magnesium. Don't just lay there and take it! Try everything! You are not alone!

debi in Fl w APS

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I guess I should have said "wrote THAT" - because it sounds like me

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I too am appalled how many docs still only give paracetamol. Clearly they do not know what it like to suffer so badly. I suffered for over 40 years and warfarin changed my life. I'm not saying I never get them but I get days without and am better able manage them, I take ibuprofen and still use old fashioned smelling salts, though not often but they do help.

To all of you suffering on paracetamol ask your GP's for sumatriptan I know people who have great success with it.

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I take sumatriptan and find they are helpful. I was interested, Lissylou, to read that you get a numbness in your nose-me too, and then it spreads to my jaw and I can't speak or eat or drink! I also find as an attack starts I lose co-ordination, first in my hands and then in my legs and feet, I then can only walk with the aid of a walking frame, just sliding my feet. I have to lie down, take a sumatriptan and sleep for several hours. That usually eases the attack but I may be yucky for several hours afterwards, too. My GP has referred me to the "Headache Clinic" at the Walton Centre (the neurology unit at Aintree Hospital, Liverpool,) first appointment 12 Nov. to get advice on preventative medication instead of just taking tablets when an attack starts.

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My migraines kick me for a few days usually. I'm allergic to codeine. Tramadol interfers with the anti seizure meds I have to take. Tried to come off the antiseizures and that was another experience altogether. When I have an aura I have to take a maxalt wafer (not cheap at around $22 for 4 wafers). They work well IF I catch them early enough. Sometimes, however, the migraines come without warning or I wake up with one fully blown.

So for me it's paracetamol and maxalt.

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Hi, If you have our illness (HS/APS) I think you should put up a new question on our site and tell a little more about yourself and where you live.

This post is 5 years old and ev new facts about migraines and our illness have developed.

Best wishes from Kerstin in Stockholm

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