Help! Headaches ruining my life

Hi, I was diagnosed with Hughes in 1998 after suffering a stroke. I have suffered with the most horrendous migraines since 1993. I am now getting desperate for some help/advise as my migraine headaches are now almost constant - I NEVER have a day without pain. I live in South Africa and almost feel Doctors here don't know quite what to do to help me - Steroids have little effect or give me no relief. The best they came up with was Imigran Injections but at R400.00 (Approx R$38.00) each I just cannot afford to take these once a week let alone every day . My INR is also kept quite low - around 1.7 - 2.0 despite taking 7.5mg of Warfarin daily. I suffer from regular TIA's . My life is total incapacitated by this condition and I am desperate- please if you can give me some advice if you can - I'd be so grateful

30 Replies

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  • Hi Pene,

    Not sure I have any answers as 'm in the same boat but wanted to say you are not alone. Could you persuade the Drs to let you try a higher INR above 3 to see if that helps? I think but not sure that mine ease when my INR is around 3.5 but it is so rarely that high that I'm not sure. Below 3 and a heap of other nasty symptoms jump in.

  • Thank you so much for your advice = will certainly get my INR Raised.

    Lol

  • Hi Pene. I really sorry to hear that you are having such problems. I really think that you need to talk to someone that has more knowledge about APS or you will need to get the information from the HSF website about keeping the INR at a higher level (3-3.5) in order to hopefully help with those migraines.

    Unfortunately what you explain is something we hear about quite often on hear and you will probably need to educate your Doctor if you cant get to another that is close by with better knowledge. I think raising your INR in the first instance will be the key to see if it helps your headaches before sending you off to see headache specialists.

    Im sure there will be other people who will come on and perhaps suggest someone in your area who you could go and see. Im sorry I cant be more helpful. Please let us know how you are getting on x

  • Thank you so much for your advice - I will do!

    lol

  • Hi there, there appears to be something here, with contact info: apssafoundation.co.za/APSVD... - maybe you could find some more localized and specialist info: Mary F x

  • I have sent my contact numbers to Pene. Thanks Mary xxx

  • Great stuff. Mary F x

  • Hello Jane

    I have not contacted you cos I did go to apsfoundation.co.za and found I was being treated by the only Rheumatologist in my area. He has agreed to raise my INR and has doubled my warfarin dose to 15mg daily. I am so cautiously optimistic as I have been feeling better already - not even a week with raised INR - haven't had it tested yet will be doing that next week : ) I am still getting the odd headache but they are not so intense and definitely not continuous. I am SO grateful for the advice - this may be the turning point in my life. Thank you so much.

    Keep well and take care

    Love

    Pene

  • So glad things are working out and you are starting to feel better x

  • Oh What good news Pene! Thats the sort of news we like to hear. Its what we call a result!!

    Hope you continue to do well :-)

  • Hi Pene. Get in contact some time, even just for a chat. I am so glad you beginning to feel better. I am closing the foundation as I cannot afford to keep it going, but will always be here for support. Take care hon xxx

  • Hi Pene. Give me a ring whenever you feel like a chat. I am closing the foundation down as can no longer afford to keep it going. But, I will always be here for support. I look forward to chatting to you. Take care Jane xx

  • Thanks so Much Mary!

  • Hi Pene

    I'm really sorry that you suffer bad headaches, I know what it's like. My health background is a bit different to yours, suffered TIA's and was told I had vasculitis and treated for this, also told I had SLE and then APS. Depending on who I see the heading of the letter says different diagnosis. But I suffer with a pretty much constant headache which some days I can ignore but on others it can be debilitating. The neurologist says that I have muscle contraction headache and under his recommendation I saw a physio, who said I don't have this and wrote to him but he still says I do, the rheumy treats me for vasculitis, SLE and APS. In a morning a normally take two paracetamol and cocodeamol to take the edge off a and i try not to take anything else if possible. I've been given different things but I've found that what does work is tramadol, but this become addictive so I don't take it regularly. It really works for me but it can make me a bit spacey so when I've decided to take it I will normally only take two together and not take anymore that day plus I won't take any for the next few days(unless its gets too bad).

    There has been lots of press about the regular use of painkillers actually causing headaches so twice in the last three years I have stopped all pain medication for two weeks (I told my GP I was doing this so he was aware) and all that happened was my headache got worse!

    Maybe try speaking to your GP and see if he will offer tramadol or if he has any other suggestion.

    Lets us know how you get on.

    Louise

  • Louise your story is like mine was. In the years before diagnosis I often took 8 paracetamol per day, or up to 1800mg of ibuprofen ( yes that figure is correct and my GP let me) how I did not get an ulcer I will never know. And yet it never went away but I did not know why. This went on to me being 44 when I saw the Prof and got warfarin. If at some point you got a diagnosis of APS were you ever offered treatment? You say you are treated for 3 things, what do you take?

  • Hi Jade

    I ended up in hospital in 2008 and 2009 after TIA's and was told I had vasculitis and SLE in the October of 2009 I had three pulses of cyclo and then in January 2010 I had rituximab. A research dr came to see me when I was having the first rituximab infusion and took some bloods asked loads of questions and I was then told I had APS. My daily meds are azathioprine, steroid, warfarin plus 4 blood pressure meds, and insulin (I'm diabetic too my immune system really dislikes me). My INR target was put up to 3.5 to 4.5 but I was still getting headaches so earlier this year they dropped it back down to 2.0 to 3.0. Have you found that your headaches went once you started on warfarin?

    Louise

  • Hi Louise

    Thank you so much - I have had Tramadol & Tramacet, and neither really helped - the most relief I get id from Indicid Supps 100mg - not pleasant but anything that will help! I know its addictive but how I wish I could get morphine to use at home - not only in hospital! Guess they know its not a good idea.

    lol

  • hi pene having such a low inr would be the first place i would start. The dose of warfarin varies for us all but its the inr that makes the difference not what dose it takes to reach an inr that means you have less headache. I do feel your frustration hun and how miserable your life must be waking with headache and going to bed with a bad head ;-( you need to take control get as much information as you can to take to your doctor and ask to trial an inr above 2.5 to see if that makes a difference take care hope you feel better soon kxx

  • thanks Kathy

    You are right - I think the Drs freak out because it takes such a lot of warfarin to get my INR up -but I will get it up.

    lol

  • Sorry to hear about your horrid headaches. I suffer too and knkw how debilitating they can be. I keep a diary and have now got an appointment with Prof Hugjes to see ehat he thinls abput it all! I hope you can get some answers soon. x

  • Oh how I wish I could see the 'Master"! Unfortunately I live in South Africa - but will keep trying - another member has given me her number to try get a referral to someone who knows!

    lol

  • Hi Pene as soon as I saw the INR you are kept I felt that was a probable cause of your headaches. I know most docs believe that with an INR of 2 you are safe from strokes. However Prof Hughes says that for those for whom headaches are a major problem they an INR of over 3. I was set at 3.5-4.0 however I manage headaches well at about 3.2, but should I drop below 3 all my symptoms come back and headaches with a vengeance. Please ask your doctor to consider raising your INR to see if that helps.

  • Thanks Jade - seems that its common sense that my INR should be much higher to every one but me! Thanks again

    lol

  • Hi Pene

    I suffered from very bad 'Classical Migraines' (prismatic zig zag blindness followed by a very bad headache) until I was diagnosed with APS. Prof Hughes set my INR target range at 3.8 to 4.2 and I was free of migraines and most other symptoms for 7 years, unless my INR dropped below about 3.3. Then the migraines suddenly on Christmas Eve 2009 and continued until I was put on initially 10mg now 20mg of Amitriptyline, which has stopped the 'classical migraines' completely.

    Best wishes.

    Dave

  • Hi Dave

    Thanks so much - I do take amitrityline =50mg daily but seems my INR is much to low - gonna try get that up and will see what happens - thanks again

  • You are very welcome Pene.

    Good luck with getting your INR up. many APS patients need to be around 4.0. I also take 75mg of Aspirin per day too.

  • Hi Pene I,ve had this too , and I have a constant battle to get them to keep my i.n.r.3. or above, it certainly helps,but I,ve had t.i.a.,s too and the last one made me il for some time and has affected my eye sight , but strangely after 20 years it stopped the migraines. But I still take great care with my diet ,( little fatty food and frequent fish meals) plenty of fluids, and to stop me getting "blocked up" , I am prescribed up to 10 bisacodyl a day. Also plenty of exercise walking. And I no longer drink coffee AT ALL this has lowered my blood pressure. Really all just suggestions, any of which might help you. I was diagnosed with a.p.s. 20 years ago, and it took me a long time to find out these things. I really hope it helps you..

  • Thanks so much - must admit I;m so tired most of the time I do no exercise at all. I live alone so its easier just not to get out of bed at all for days on end! really bad I know but hey who's watching! I will try exercise a bit more, I do have a low fat diet - when I eat that is - I have a really poor apatite Unfortunately I'm terribly allergic to fish so that rules that out! Thanks for the advice - I will try!

    lol

  • Hello Pene, I can really appreciate the situation you are in, that was me not long ago. I have had migraines since childhood and tried just about anything you can think of to make them stop. Most things have not worked very well or not at all, but triptans work, like Imigran, but there are newer, better triptans on the market now. The problem is, like Louise said, if you take too many triptans you will get withdrawal symptoms and more migraines. You certainly wouldn’t want to take Imigran every day! I have also tried stopping all medication for up to 2 weeks, in the hope that some of my migraines were caused by too much medication, and that I would then get better, only to find I got worse migraines and was no better afterwards.

    I used to have 15-20 days with migraine every month, year in year out. In 2006 I started taking Topiramate, an epilepsy medication also used for migraine which you take every day. It has to be initiated by neurologist. That significantly reduced the severity of my migraines but not the amount. Then I was diagnosed with APS, put on Warfarin and eventually got a target INR of 3-4. That reduced the amount of days a bit. But it was when I switched to Fragmin injections I really saw a dramatic improvement in my migraine. The last few months I have only had 3-4 migraines per month and only light attacks lasting 3-4 hours, which is like nothing compared to the 18-24 hour long terribly painful ones I used to have.

    There are side effects with using Fragmin long term, but for now I have been allowed to use it since it treats both my APS and my migraines. It is under review and I keep a detailed migraine diary. Treating migraines is a lot of trial and error, what works for one person isn’t necessary going to work for another but without trying you won’t know. Try to get referred to a head ache clinic, they might have something else for you to try, but your haematologist might be the best one to help you after all. I would suggest you print off Professor Hughes recommendations for target INR for APS patients, take them with you for your next appointment with your haematologist and question the INR target set for you. By raising your INR you might see improvements with your migraine too.

    In addition to all this, stay well hydrated, keep a migraine diary and also write what you eat and drink. Good luck, take care :-)

    Helene

  • I have had headaches and migraines everyday for years. I thought they were due to weather changes but after coming on this site I realize it must be APS. I have had the injections that didn't help any 2 times. When I started coumidin they vanished. The headaches are returning though. My INR was 3.4 last week.

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