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Sticky Blood-Hughes Syndrome Support
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Migraines ... a pain in the 'you know what' or what !!! ?

I've been diagnosed with APS since 2006 and what a roller coaster ride THAT has been. It's been like a cascade; I'm just dealing with APS when I'm then told I have Rheumatoid Arthritis. I get used to that and then along comes Menieres Disease and hearing loss, oh and then lets not forget the vertigo and unsteadiness like I'm walking on a river of mud. With the hearing probs comes Tinnitus (keep hearing those cockamame bells along with the jumbo jets), can't sleep with it and get as irritable as heck. I'm only 48 but feel 108, I'm slowly catching up on Dr Who :). But what drains me more than all the hand & leg shaking, the forgetfulness, eye pains, joint pains and ear ringing ... is the migraines. Because I have a 7 year old daughter I have to keep going. I'm a single parent with no one else to help and when I have a migraine all I can do is do my chores as best I can. Thankfully I don't drive, but walking to and from school is quite hilarious at times as I can suddenly veer off to one side and nearly end up in a bush ... not in the road as yet. I've recently had my Atos medical ... and yes, like many others, I have been deemed fit for work. My appeal is going through and all I can do is wait now for when I am going to be called to court. Just wondered if anyone else has migraines that are all on one side of the head and can last anything from 24 -72 hours like mine do? They seem to be never ending and SO tiring.

42 Replies

Hello there, you tell a very familiar tale, is your care ok, is the communication good, with a good team? Hope things improve, do let us know how you get on. I hope that bush is not flat yet!!! Mary F x


Well, me thinks my GP knows more than the consultant but at times I feel as though I know more than all of them put together. I'm on tablets for this tablets for that and I see separate consultants for separate problems rather than ONE that deals with APS. At times I feel as though I'm going mad because I get treated as though I'm making things up !!! Even my Rheumatologist has moved my appts to yearly now as I don't think she knows what to do with me ... as for the Neurologist I have no idea when I'm seeing him. Why can't everyone work together? Me, I'm just plodding along and then because of the fuzzy memory and word stumbling I feel like a freak. At times I feel like I just want to go into a darkened room and hide under the covers in a corner. Thank heavens for this sanctuary ... I'm not alone and I'm not the only one being driven mad by this syndrome xxx


Where are you located, as maybe people on here could guide you to actually somebody with the correct skills for APS and the associated medications! Just a thought! Mary F x


I'm in Runcorn, Cheshire ... I see medical staff based at Halton Hospital and Warrington Hospital. Sometimes I feel like I'm being passed from pillar to post as people don't know what to do with me. I also feel that they think I'm making things up ... no way could you make this s**t up about APS ... and to be honest who would want to !!!!! Thanks Mary F xxxx


And you can also self refer yourself to the National Migraine Centre in London, I have used them myself, they also have a forum on this platform. One of my children had a migraine which lasted 15 months with dead legs and blackouts plus phonophobia and also vomiting, it did remove the terrible blocks on our care, Getting into St Thomas; was made easier for our family, plus of course I had a desperate dash to London Bridge and although hard up paid to see Professor Hughes, this smoother out all of care and improved my general lot! Mary F x


Hello Trey - I understand what you are going through as I not only have APS but have suffered from chronic daily headache since 1999. Its a condition called Hemicrania Continua and in the end I had whats known as occipital nerve stimulator bion implant to sort it out.

It sounds to me as though you need to be referred to a headache specialis because although migraines are all part of APS they can also be a condition that need to be treated separately especially if the pain becomes intractable and your quality of life suffers as a consequence.

Is it possible that you could be referred to London to see such a specialist from Cheshire? If so I can give you the name of my specialist as he is one of the best there is and will be able to not only diagnose exactly the type of migraine you have (there are a few) but also the correct medication or treatment and also work with your other specialists for your APS.

Please let me know if I can help further.


Hi Lynn ... I don't know about the referral as I still haven't got a follow up with the neurologist when he asked for the mri. My headaches are all on the right side of my head and I have right eye pain with it as well as constant ear ache ... all on the right side that's what makes it weird ... the hand and leg shaking is on the same side. At the moment I am on a number of tablets but the one they have given me for pain is Gabapentin 200mg twice a day and then 300mg at night. Most days I just have a fuzzy, woozie and mild headache. Other times it's like a dinosaur rumpus is going on in my head. xxx


Im not a doctor so this is just my thoughts but is it possible that your headaches are to do with your INR etc? - however one sided pain accompanied by same sided eye pain, radiating into the ear (feeling of ear fullness) tearing, redness, pain in cheek, teeth, etc could all be a sign of a type of headache known as trigeminal autonomic cephalalgias (TAC) of which my headache is one of them.

If you think of Migraine as being one end of the scale of types of headache conditions on the other end of the scale in rarity is TAC's. A lot more is now known about not only treating Migraine especially intractable migraine but also some of the more rarer types of headache.

I think its really important to know if you are suffering on a daily basis what exactly you have got because if it is not a "basic" migraine its going to need some sort of specialist knowledge to get pain under control. This will be beyond most GP's and in most cases the local specialist which is why there are centres like those at the National which specialise in these conditions.

I am attaching a link to the Nationals Headache Group lead which gives a good overview of the work that they do. This is not the guy I see. He has now left there and set up his own Headache Group in another London Hospital but his name appears on all of the studies on this link as he lead them! He now spends 3 out of 4 weeks of the month in San Francisco leading a Clinic there and then has a week here.

If you think your headaches are more than just Migraine or "different" as I did, research TAC's and see if you think you fit. You will then have a better chance with your referral prospects. If it makes you feel better my path to this Neurologist took me via an ENT to another normal neurologist to yet another neurologist experienced in headaches of this kind and then to this guy! BTW Topiramate is what Ive been prescribed and it works well apart from the implant.



Thank you for the info Lynn, I'm a little pushed for time at the mo and the charge is gonna go on my laptop so when I get home I will read this again and in more detail ... thank you so much for the info and trying to help xxxx


Hi I have thankfully amazing care

Multiple pulmonary emboli in third trimester of last pregnancy - leaving me with abnormal transfer rate

Vertigo dizzyness loss of balance migraines (7 days worth last week) lost some of my vision in my right eyes for 48 hours last week left hemisphere as my gp called it - osteo arthritus slurring memory of a gold fish tinnitus throwing things across the room with involentry motions needing to be held up when legs and balance so off looking as if I'm totally drunk no numerical skills and now positive for lupus - sleeping 16 hours a day now :(

2 hours a day with my kids is just so heartbreaking I am lucky though I have a husband who cares not only for me but the children

I have had ATOS review (via disability benefit) they came to me. I have been confirmed as disabled haven't worked since 2005 when DWP signed me off work for 10 years - at the time I couldn't believe it but they knew better than me how my illness would progress.

Oh how I love my APS

Quite fed up with it really !

Do any of you have trouble keeping up with correspondance I cant consentrate long enough to get anything done ! hate the postman !


Hi ... yes, I have the trouble with the correspondence thing ... my table looks like a sorting office sometimes.

I've also said to my daughter that I have the memory or brain capacity of a goldfish and she told me off lol ... says I'm just forgetful lol and she gives me a sticker when I remember something she needs for school ha.

I've had 2 dvt's before I was pregnant, 1 when I was pregnant (the less said about that the bettter) and 1 after I'd had my daughter. Thankfully I've had none since 2005, as far as I know, because they changed me from Warfarin to something called Sinthrome. My INR has settled much better on sinthrome that on the warfarin but I still get the odd spike now and again for no particular reason. My personal best for going the longest time before being seen at the inr clinic is 8wks ... then I usually get a spike and end up back at square 1 again. xx


I'm sorry to ask but did you get a PE in pregnancy even though you were on aspirin and LMH injections? I'm just trying to understand it all as been diagonised through miscarriages.


Hope I was taking profalatic does of fragin :(

surprised everyone not least myself was close to popping my clogs (but local hospital sent me home 3 times before I went to my heam diagnosis in 2 hours as local hospital left me dehydrated clots spread all over both lungs ) labour went squew wiff too ....

But hey 1st baby pre eclamptic 2nd severe kidney infections 3rd although I didn't know it at the time clotting and lost sight in one eye but doc at the time said I had a bad case of pregnancy FOOL ... (diagnosis 1999 by very clever gynea whilist having routine laparoscopy for severe periods and ovarian cysts). 4th suspected clotting profalactic fragmin 5th profalactic fragmin the minute I found out I was pregnant - thats the one that tipped me over the edge - no aspirin

I had 3 miscarriages in early pregnancy in between but did not report it at the time as they were so early - all these babies over 15 year period


Hi I'm Sue & can sooooo understand what you have just said!!

I am always veering off into doorframes,bushes etc!!!

Migraines I get often even tho' they said they would ease once on warfarin?! Been on them for 11 years now!

I hope you win your court case too as we all are going to have that bridge to cross :( I'm hoping to go self employed next year but can't work for someone else as I'm 'unreliable' & the money I receive helps me pay for the gym so I can get myself from a-b reasonably well most of the time! Without the gym I'm back at square 1 :(

Let us know how you get on x



I have 5 children and I never remember anything they need for school My husband is the only reliable person in this house Unfortunately I am not a candidate for Sinthrome as my target INR is 4 :( - even then I drop like a stone often ! I never go more than 7 days without a reading

I provided a blood sample on 11th for a new study and I am so hoping that someone finds a resolve to this before my daughter is of age would hate for her to go through the same as us.

I cannot go to the gym lost so much muscle power cant even carry a shopping basket have been the same for approximately 4 years my two young boys carry all the shopping 10&9 the strange looks you get from people thinking I am a cruel mother -

I have started swimming and the two littlemen cheer me on for each length I achieve - again strange looks surround us.

I am very disappointed with my boys school 3 years ago I asked them please could I go on a school trip with our youngest highlighting that I didn't know how long I would be fit enough to do a whole day and as I'm sure you can guess I have never been picked if only they apprciated how inadequate we feel.

My husband has re trained in the hope we can generate an income as we are at risk of losing our house all down to me being unfit.


What do you take for your migraines ???


HI. I have been diagnosed with APS, but am not on medication. It was suggested to me by a British medical site that anyone with autoimmune conditions try going off gluten.( I live in the states). I have been off from gluten for more than two years. Most of my symptoms continue with the notable exception of the headaches which would turn into migraines if I could not get them under control. This was an unexpected and greatly appreciated benefit for me of going off gluten. You might want to consider it, as you know who debilitating they are. Best wishes to you.


I'm already on a gluten free diet as I am a Coeliac and have been since I was 33years old, which has been the last 15years.; Thank you for your input haley x


At the moment, the gaul, I am on Gabapentin 200mg twice a day and 300mg of Gabapentin at night. If it doesn't work then they are putting me back on Amitriptyline ... which I am not looking forward to. :( xx


Hi Trey, I am in Australia, I also suffer daily migraines and am struggling with my GP and nueuro to come up with manageable pain relief solutions as i have had strokes and seizures so most meds I cannot take , i had been on amitriptyline before, it did not agree with me for lots of reasons,my gp could not get my doses right and had me almost sedated i was constipated, and dehydrated and put on 30 kgs very fast, i was put on it for depression and neuropathic pain from the paralysis caused by my stroke, i didnt suffer migraines then, good luck to you, every one is different it may be helpful to you. Kris


Hi Kris ... I like you am struggling with my gp and neuro trying to find medication that actually works. Y/days migraine was so debilitating and was quite a banger that I felt my head would explode. I'm waiting to go back to neuro (he's on hols at the mo) and when I get the letter from him I will find out what the next stage will be. I like you do not do good on amitriptyline (zombie mode) and like you I was put on it for the neuropathic pain and depression but I felt more depressed and tired on it and wasn't very good at stopping the migraines. I do hope you find medication that works for you and thank you so much for your information xxx Trey xxx


Hi have I got it right you are not on any blood thinners (Warfarin etc)

I have had only a few migraines, thank God.

I suffered from really bad dizziness for years at its worse I had to crawl. I was put on betahistine 16mgs x 3 a day brilliant couldn't live without them, Your Gp could prescribe them I don't think their are any side effects I take them and I am on Warfarin.

they are not for migraines but ? might work on your dizziness

Good luck



I have been on Sinthrome (a blood thinning drug) since 2004, the year my daughter was born. The INR clinic changed it from Warfarin as my hair was falling out too much and my bloods would not settle on it. and I'm still on sinthrome at present my inr level is 2.5 to 3.5. I am also on Betahistine 16mg tds but I still get really bad vertigo attacks and have fallen a couple of times. APS is not my only problem but is the root cause of all of the probs, so they tell me.


yes... I have at least 3 to 5 migraines a week. I had them as a teenager, then then went away for many years, then reappeared in my late 30's just once a month to now - a lot. I live in the states and have tryed many meds. What seems to work now is Topamax everyday so they are not so often and so bad, and the ONLY med that stops them or at least lets me be able to half live is RELPAX. It is a triptaphan BUT the only one that works for me. It's still hard to live your life - but it takes the "ax" out of my head feeling.

debi in Fl with APS


Hi Debi ... I too, like you had migraines for years and then they went away when I was pregnant. Within 3 years of my daughter being born I would get the odd one every now and again. Now they have increased at such a rate over the last 2 years, I don't know whether I am coming or going. I'm hoping a different medication can be found for me to take instead of Gabapentin OR Amytriptiline as I've tried the latter before and I just couldn't function on them. Not a good thing when you have a 7yo in the house and a single parent. xx


trey bon

To begin with I was prescribed amitriptoline 10mg (felt away with fairies)

Moved to nortriptoline 10mg (not so far away with fairies but still yuck)

Now taking Lamotrigine 200mg twice a day worked REALLY WELL for most cognitive problems well mostly and migraines managable however over last 8 months migraines and cognitive skills problems came back with a vengance so added proprananol in the morning 40mg but migraines still rearing their ugly heads last week head felt like it was going to explode :(

There is one last drug they can try and I'm meeting with my neuro on 8th to swap over

proprananol calmed my racing heart down a bit too...

I think that nothing will stop these migraines I just think they make them more manageable but LAMOTRIGINE is bar far the best for control I have found so far

Maybe you should ask about it ?

I will let you know how the new drug works once i have been using it a couple of weeks or so.


Hey thegaul ... I had an 'exploding' headache y/day and today my head is very fuzzy and my head is 'half banging' if you know what I mean; it wants to turn into another migraine but it isn't forming. My legs don't work very well today and have tripped a couple of times. Have not fallen yet, like I did with the last migraine ... still getting over the bruises from that and don't want any more. Please do let us know how the new drug works out, I'd love to be able to go to the drs and say 'can I try this ... ' worth a try ... Take care xxxx Trey


Yes.. I also do proprananol - its an high blood pressure med BUT it is to keep the blood vessel normal.. its a preventative. Again the ONLY med that works at the 1st sigh of migraine is RELPAX. ask for it...not one LIKE it...but this one only.

debi in FL w APS


I had a letter from the neurologist today and it stated 'as your mri scan appears normal, which is reassuring, will see you as normal on 22 May 2013'!!! Now THAT is what I was not expecting. So now I will be seeing my gp on the 24th and hopefully be able to get some pain medication that will actually work ... so I think I will be asking if propranolol and if that will work. Really feel like I'm banging my head on a brick wall and no one cares, or is listening. :(


It is noral for MRI's to come back this way - They know that nothing can be seen on scans but in the same breath know that all patients report the same symptom ! I belive it may be due to white matter surrounding brain but dont hold me to this - My MRI's (once every 3 years) have alway come back normal !

Lamotrigine works for migraine ! I have just become more syptomatic hence introduction of propananol

My migraine related problems caused me to lose sight in my right eye for 36 hours a couple of weeks ago (really couldn't move you know when your head hurts so much you can't stand up face donw in a pillow time

which hospital is treating you for your neuro care ?


Walton Neurology (Liverpool). Thankfully I'm seeing my gp next week and can get the tablets changed.


i have just left hosp after 3 days after being admitted with a migraine,, they did a CTscan and thankfully it was clear but have a letter to go back in for a more intense scan,, they called it something but i forgot,, i have APS but the migraines are taking over my life,, i could quite easily overdose on painkillers trying to get rid of the pain, its dredfull,, i wouldnt wish it on anyboby x


Sweett - Many of us feel the same way I'm sure !

At least when you have the full on migraine you know what it is but when it has past the my head is going to blow up stage that feeling where you are in a bubble and have severe brain fog and not till this has past do you realize its still the bloody migraine -

Its like your brain turns off for days on end !

Got 3 letters here that need replying to they have only been here for 5 weeks and I haven't even opened them yet brain seems to have been mush for 2 months This so gets me into trouble forgot a parking ticket that is now £202 and just can't fill in form :(


Hi just had to leave a comment..I call my migraines (the four day hell) I sink on day one knowing whats ahead, day two and I start to push myself to do more chores than I'm probably up to, anything to distract me from that constant pain, by day three I'm literally banging my head just to give me a change from the monotony ! Day 4 complete exhaustion and finally relief..I go through this at least twice a month. Coupled with the giddiness which can last up to several days, my daily fatigue, my aches and pains etc etc etc..its hard to keep positive..but like you I too am a single mum and we simply have to get on with it.

I am also awaiting my court dates for the atos tribunal, its been over a year since my medical where I scored 0 points ! I visited St Thomas' and it was mostly very positive, but my results were negative that day and I was sent home with new meds. I've been taking them for 4 months and still hopeful for an improvement. Even though I suffer this way and have experienced 6 pregnancy losses as a result of APS I was told by the Dr in St Thomas that my APS was mild, he's the expert..but having been plagued with these symptoms all my life I can only begin to imagine what it must be like to have severe symptoms ! I have written to my Dr at St Thomas for his support in my tribunal but I haven't received a reply of any kind in months...it's all such a lonely and difficult path to walk ! but onwards we have to go, you are not alone, we are all quietly united. I hope this site gives you the support I have received from it..thank God for it at times :) Oh by the way I take paracetamol with caffeine and if anything helps a little thats the one for me..I think caffeine opens up the capillaries so that everything flows better..i'm not advocating caffeine..it just seems to work a little for me x



It is normal for your Anticardiolipin/anti beta 2 glycoprotein 1 antibodies to fluctuate

That doesn't mean you are negative for Antiphospholipid ! to class as having APS you have to have 6 months worth of results showing raised antibodies then you can be and should be confirmed as having APS no matter what the results say

I have had negative periods but I have APS

(SNAPS) Serum Negative antiphosphlipid syndrome

Currently my levels are low - I am provided with copies of all my results by my super duper doc. Who has educated me over the years what each test and result mean .

My GP has also researched the condition so he can help me through this torment of a life I am the only APS patient he has ever had.

I AM VERY LUCKY in this regard !

You should really speak to someone about prescribing you with something for your migraines ! a pain mediator

Sending You Love and smiles


Thank you for taking the trouble to respond..I was diagnosed with APS by Proff Raegans team in St Mary's early MC centre in 2008 after years and years of enduring alone. After 6 mc's I decided to stop trying for more babies especially as my last attempt ended in an emergency life threatening ectopic hemorrhage. I was obviously discharged from the MC centre then but because I haven't had a clot other than the ones that prevented my pregnancies to develop, I have been kind of floating around, suffering in silence. Was glad to reach St Thomas eventually as my symptoms are restricting my quality of life big time, fingers crossed for the new meds to kick in soon, and hope to GOD I win my appeal ..I will talk to my GP AGAIN !!! about the migraines and giddiness..have just come off crutches with sprained ligaments as I fell in my garden due to a giddy attack..but knee much improved now..thanks again for your words !



Ask for a referal to a neurologist ! Be ademant don't take no for an answer if he/she gives you agro highlight the fact that they have a duty of care ;) You must tell ATOS review about your fall and always go to the hospital so it is recorded it makes such a difference on the paperwork

I have had really serious injuries that lay me up for months because I am impatient and don't wait for my husband to help me (Or I'm being stubborn and don't want anyone to help me) x


Thank you again, how kind of you to comment again ! My Dr is away on hols, so going to wait until hes back on Monday and go from there. I will definitely ask to be referred. I did go to A+E with knee and had physio and yes got everything documented for ATOS. I have my appointment with my welfare officer on Tuesday, which I've waited over 2 months for !!!! Unfortunately I live alone with my 12 year old daughter and basically have no choice but to just get on with things..obviously on my bed ridden days I just can't do !!! But otherwise I just have to. I probably take hours to do something that would normally take ten mins, but we get there in the end, thanks again


Hours tell me about it !


I've had my tablets increased ... Gabapentin has being increased I've the next 4 wks from 700mgs a day to 1200mgs a day ! Then if I still have migraines then my tablets will be changed.



I got my new migraine tablets today - Neurologist said they are the only ones that deal with the auroa (is that spelt correctly?) symptoms ??

flunarizine anyone else using them ?

He added it was not licenced in the UK so I can only get them from the hospital - Thing is !

Side effects 1 in 10 have weight gain so I really have no intention on taking them struggle with my weight on a daily basis in my world my weight works on a 3 year cycle

3 years big three years small - Guess which cycle I'm on at the moment :D

Roll on October 2013 !!!!!!

I think I would be better using my current coping mechanism pillow and duvet in the dark with silent children ;)

And no one cooking


Hi the gaul ... I really do hope that your new medication works. Due to another medical problem (my inr being too high and me having two bleeds in my left leg) I've had my gabapentin increased to 600mg three times a day. I still get the headaches but they are greatly diminished but I still get the aura, vertigo, audio earache and visual disturbance in the right eye.

Good Luck with your tabs and loving the positive outlook to Oct 2013 xxxx Trey xxxx


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