Headaches while asleep

[Elaine77c]

Hi All

Does anyone else get headaches just when they are asleep? You may ask how do I know if I am asleep - I have to get up to go to the loo, so half awake and headache always present then, but not during the day. Get blurred vision and floating grey bits in front of my eyes in the day, but not headaches unless INR so low I am having heparin injections as a safety net until it goes up. INR not stable, in fact up and down like a yoyo, but I don't think my body gets on with Heparin so no alternative until the new anticoagulants are available to me. The headaches at night don't interfere with life as such -just wondered if I am alone in getting this symptom.

Thanks

Elaine

[MaryF Administrator]

Hi, my youngest son had migraines so severe they were 24/7 and continuous and even if he did go to sleep would wake him up. Two Aspirin a day plus the addition of other medication has broken them up quite a bit, nothing worked until the Aspirin! All supervised under a paediatrician! MaryF

[Elaine77c in reply to MaryF]

That's interesting, before they got my INR to go up at all I was on Clopidogrel - they said to stop it when started Warfarin and got really bad headaches so went back on Clopidogrel until INR got up over 2.5 - didn't want to give it up then but they were not happy for me to be on a anti-platelet and an anticoagulant together. I have Topiramate to stop migraines too, but I think anti-platelets have a place even with warfarin.

[MaryF Administrator in reply to Elaine77c]

Well with him, myself and my daughter plus one other son, there is no Warfarin, Aspirin only and some Plaquenil at the moment, although this may of course change.

MaryF

[Manofmendip]

Hi Elaine

Why do you think that Fragmin disagrees with you?

The Mineral Hospital in Bath support my GP and I in me being on it instead of Warfarin, which seemed to stop having any effect on my symptoms. I'm on Fragmin and 75mg Aspirin too. I was in the Aspirin when I was on Warfarin as well.

Best wishes.

Dave

[Elaine77c in reply to Manofmendip]

Hi Dave

Was on Heparin (not Fragmin - the other one, can't remember the name, does it begin with C?!), for about 3 weeks, did not feel too well on it, and had a strange fever like episode which left me with severe arthralgia - my joints have never been the same since - now it may just have been coincidence but that it happened whilst I was on Heparin but it means I now don't trust it. While I was on it I actually emailed my consultant as I was worried that Warfarin wasn't working, didn't feel Heparin was and I didn't know what else they would give me if none of the anti-coagulants would work for me! Anyway, the Warfarin levels went up and I could stop the Heparin and then started to feel better - still have joint pain now though. I haven't yet made the move to the Min as I do think current Consultant does quite well and I do like her - of course if I feel my health is compromised in anyway I will be off like a shot!

Thanks

Elaine

[Manofmendip in reply to Elaine77c]

Hi Elaine

Clexane do you mean? Maybe Fragmin would be different to Clexane and could be worth a try.

Who is managing your APS? I now go to the RNHRD (The Mineral Water Hospital) in bath, where we have also set up our patients' group 'APS South West'.

I agree with APsnotFab about going to see Prof Hughes.

Keep in touch.

Dave

[Salty]

I need brand plavix (failed conversion to generic when it came out) and LMW heparin to control my symptoms

[Elaine77c in reply to Salty]

Hi Salty

Yes I remember some useful conversations with you about this at the time when they first took me off the Clopidogrel - I have been ok with just Warfarin up to now, as long as it is high enough!

Best wishes

Elaine

[Elaine77c]

A few months ago I was very disheartened with my Consultant - well not her, it was one of the Senior Registrars, - but since then they have really been supportive and helpful, so I have held off making a private appointment. If these night headaches continue I will mention them at next appointment and then may make a decision about private. What worries me is that I could have another stroke in the night and not notice until I wake up and it is too late to reduce the damage or something - possibly over the top level of anxiety there, I recently went to GP as thought I might be having a heart attack - but in the end they decided it was probably acid reflux/heart burn or something!!

[Lure2]

Hi APsnotFab,

Hope the tachycardia will improve like the Syndrome X

I do cardiactest also. I have no pain when exercising though. Too high pulmonary hypertension and also diastolic dysfunction. I had pain for one hour some months ago with a duration between the pain up to 1 - 1 1/2 min. That when I was resting.

Take care and good luck that you will improve.

Kerstin