Headaches and aps

I have aps and currently on 300mg aspirin but have always suffered bad with headaches and migraines but my doc seems to think they r nothing tobdo with aps, but improved when she increased aspirin. The last 6 months or so i havent had a single headache free day and suffering memory problems, ive had a mri which she said is fine but said herself that aspirin is no longer working for me but wont put me on anything else. Ive now been put on topamax for headaches but have had awful side effects but every doctor ive seen at my local hopsital say that aps does not cause headaches. does anyone else with aps suffer with headaches, if so what do u do to help xx

14 Replies

  • APS most definitely causes headaches!! And lots more, too!!

    I hope you can come off that terrible topamax soon (its one of those you need to taper off of) and maybe you can convince your doctor to trial you on some anticoagulant since the aspirin isn't working anymore?

  • Well -you do tpye some, now dont you ?? what is topamax??is it like a steroid- or more on the asprin line ????? jet

  • Ive just stopped taking it without telling the doc as i cant bare the side effects another day, its worse then living with the headaches, but thank u for your comment x

  • DON'T Do this!!! You need to taper off the Topamax, not just stop abruptly!! VERY DANGEROUS!!

  • My Consultant which I was under told my GP to put me on Gabapentin 100mg for Migraines as I have continuous ones in which I take 2 in the morning and 2 at night in which it takes away about 95 - 98% of the pain away. I use the occasional paracetamol to numb the little pain what is left which help.

  • How long have you been on the Gabapentin and have you noticed any weight gain? I gained a ton of weight on it years ago and its a common side effect...

  • I have been on these for about 18 months. I can't seem to loose it. I was of work about 3 weeks ago with a chest infection for 2 weeks and I managed to loose 7 pounds. Once better I started to regain weight.

    I have used weight watcher calculator to try and loose weight, I have even cut down what I eat at work and eat fruit and cut down at home, now I just play it by ear, if I want Ice cream I will have it as long I am not greedy!!!!

  • They are wrong and your are right. You need to be referred somewhere with the expertise, such as St Thomas' or a consultant recommended on here by several people close to your area. Mary F x

  • Claire- you need to get the info on a.p.s. , alot can be gotten from this site and bring it to your dc . and say now you read this , even offer to read it to them ,if thats what it takes OR like Mary says ,just get another dc. dont take unnessary chances!!!!------------------------- jet

  • I had a headache for what was probably years. I was told that there was no reason and it was migraines. Not much helped. My doctor told me I need to seek mental help because it was due to stress. Three months later I had an occular stroke. As soon as I went on Heparin then Coumadin in the hospital the headache(s) ended! Most definitely headaches are a main complaint of Hughes/APS. I took a baby aspirin for the longest til I had the stroke.

    As Mary said...you need to see a doctor who has knowledge of APS.

    Hang in there and do what you have to do for yourself! :)

  • Claire,

    Who did you see?

    I was told headaches were rebound from migraines and MRI ok. St Thomas looked and diagnosed cerebral aps on warfarin now, headaches gone when inr good.

    Take care


  • Yes yes yes headaches are most definately part of APS. My first memory of making an issue of my permanent headache was around the age of 10 when the school nurse came and my mum came too. They both said I was lying and that I could not possibly have headache everyday. I spent until I was around 44 trying to get relief every migraine treatment, lorry loads of pain killers and tranquilisers, anti depressants, therapy, diet changes etc. Until I saw prof Hughes who said aspirin first, then fragmin now warfarin. I do now get headache free days. headaches have been the bain of my life. So yes you are right.

  • I have had many many headaches since I was a teenager. If I didn't stop them they became (just kill me, please) migraines. I went off Gluten 2 years ago as suggested by a functional neurologist who sees patients with autoimmune conditions. My headaches have almost disappeared. Going gluten-free is totally do-able and is really not a hardship, just a change. Do yourself a favor and try it!!!!

  • As far as I am concerned, headaches were one of the major symptoms, I was eventually given Warfarin and I have looked back, I know if my INR is below 3.0 because my headaches come back. Persist and ask if you can just trial it, to see if it helps.

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