APS and cluster headache/migraine

Hi,

Have any of you any experience with aps and cluster headache? I've had it for about a year now and was diagnosed with aps about 6 months ago, after about 10 years of testing. I was told when they started me on warfarin that I should expect my cluster headache/migraine to dissapear. 6 months later and it's stille very much there. I'm down to only one attack a day, though. My dr's don't have much experience with aps or cluster headache so I feel like things are a bit left to chance when it comes to trying treatments. Figuring things along as we go is okay, but not when the treatment isn't sucsessfull.

18 Replies

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  • What is ur INR? It may not be high enough most people on this site have to keep theirs at about 3.5/4. I learned this when I joined out of frustration because even on warfarine I was having TIA'S. I find im best if my INR is about 3.8/4.3. You need to find an APS specialist, which is hard if u live in the US but you need a dr that understands APS!

  • chlowy are you based in the UK? If so I can give you some specific information as I too have Hughes and a primary headache disorder which is being controlled.

  • I am based in Norway, They are fairly stright when it comes to INR treatment here. My INR is currently aroung 3.0, as soon as it hits 3.5 they lower my warfaring doses. I've tried to locate specialist here but can't find any. I'm treated by my GP, with yearly check ups with an immunologist. Witch itsn't very helpfull.

  • With a primary headache condition like Cluster headache it is also linked to your Hughes. I have Hemicrania Continua which was intractable. I was treated with everything possible but nothing worked. Eventually I was put in a trial and had an occipital Bion implanted which worked a treat. During the years I had it I had a stoke and my APS was diagnosed. I was eventually put on heparin. Then the Bion died and I was showing signs of absences so they had to explant the Bion. Everyone thought there would be a return to pain but there was not and apart from one time when we played around with my heparin dose I have been in remission. The heparin is thought to be controlling things.

    I would advise you get referred to a Headache specialist who can work with your APS Dr's on this. The key will be adequate Anticoagulation because the brain cannot cope with the sludgy blood. If you can afford to come to England I can give you details of the best headache specialist in the world to see privately which you can then take the advice back to your local Dr's.

    I'm sorry there is no easy fix and how difficult it is. I've been where you are and appreciate how difficult things can be.

  • I'm happy I stumbled upon this page, makes a bit for sense of things for me.

    They've talked about maybe trying to give me a shot of botox in the neck, this is suppose to help with cluster. But I'm very skeptical to inejct that into my neck. Other then that I'm using bloodpressure medication with some effect.

    I would actually consider it, at least check out how much it would cost my. A trip to the uk isn't too expensive, so it would probably depend on how much the specialist would cost me. At the moment I'm willing to put in some effort to get my life working again. I've got two young children and they need their mum to function.

    As long as I'm able to find a fix that works I'm happy. Anything else is a bonus at the moment.

  • I think you should do this in stages or you won't know what is affecting what and also consider what you can achieve locally.

    My suggestions are these. PM Lure2 (Kerstin) and get her to send you the name of her APS specialist in Sweden. If you could get you GP to perhaps contact him, as language issues would not be an issue, then that may prove helpful in allowing you to start to increase your INR level to at least 3.5. You could also ask for LMWHeparin to be prescribed if your INR falls below 3.

    Secondly, I would get your Thyroid properly checked out. By that I mean FT3, FT4 and antibodies as well as Vit D, B12 and iron. If all these are not optimum you will get symptoms and Thyroid and Sjogrens runs as a trio with Hughes.

    If you can do that and it shows benefit for your headaches you may be able to avoid treatment for the cluster headaches. I've heard about Botox but you need a skilled person who knows what they are doing. They may not be needed if you can get the INR situation sorted first. If not get back in touch with me via PM and I'll get the cost details of seeing the Consultant I mentioned above.

  • Hi,

    I've used LMWHeparin through both my preganicies so are familier with it, and for treating a DVT som years back when they couldn't stabilise my INR.

    My thyroid is fairly well checked out, and I do it every 6 months or so. My immunologist said I tested positive on a test saying it will give my trouble at one point in my life but for one numbers are ok. Sjøgren is roulled out, but Lupus is still on beeing checked for.

    I phone in and asked it I could get the vitamin d, b12 and iron checked earlier this week so I should get the results in my apointment today. My vit.d is always low though. Can't seem to get it to stay above 20.

    Thank you for your help, it's bin very usefulll and interesting information. Now I just have to get my gp onboard to try a highet INR level.

  • Vit D of 20 is severely deficient and must be treated probably with injections and high dose supplements like 20,000 capsules for at least 3 months followed by maintenance doses. There are studies showing Hughes patients are at higher risk of clotting with a low Vit D not to mention it will stop your inflammation from being controlled so that antibodies can be higher. If you need copies of this study to take to your GP to push for Vit D treatment just ask.

  • Hi chlowy,

    As also said above you must first try to get your Warfarin steady at a higher INR. You must look around till you find someone who really knows APS otherwise you will perhaps never be treated.

    I live in Stockholm and selftest and have a Reumatologist and a Hematologist and after several years I am now on an INR over 3,5. Feel best at 4.0.

    Usually the neurological symptoms need a higher INR. Read also "Sticky Blood Explained" by Kay Thackray. It is written some years ago but the symptoms are the same today. Also good for relatives to understand what we are going through. She has APS herself.

    Show the Doctors what prof Hughes says!

    Best wishes from Kerstin in Stockholm

  • I also feel better when my INR is higher, but norway is far behind when it comes to treatment and sideeffects from aps. When I was diagnosed I was told it was the reason for my many miscarriges, and my bloodclothing and that was about the effect of it all. Nobody told my it was also the reason for my memory loss, and other aches and pains, fatigue and so on. I will ask my gp if she's willing to take a look at what Dr.Hughes have written and see if she is at least willing to try a higher INR mark. She has referred me to a course so I can self test my INR, but it's a long waiting list so if I'm lucky within 9 months or so. I will deifinitvly read the Kay Thackray book, thanks for the tip Lure2.

  • Warfarin was like a miracle cure for me headaches. I had 2 to 3 a week. The question was not to I have a headache but how bad was it. They were usually a a 9 or 10. When I had my stroke in 2010 I started having zero headached altogether. I hate being on warfarin but when I had a brain bleed last OctobER I had to go off of it for over two weeks and my migraines returned non-stop for over twould weeks. Now that I'm back on a therapeutic range I'm very pleased to have those unbearable headaches gone. I still have to take bteak-through pain meds sometimes but I really contemplated suicide when they were at their worst. I was angry with the hospital staff because I knew they could give me pain-FREE BREAKS BUT THEY WERE WORRIED ABOUT ADDICTION. I DIDN'T CARE, JUST GIVE ME SOME RELIEF! I'M NOW ON FENTYNAL AND nucenta and I feel fine. No one one should have to suffer unecessarily ever. And it's real pain. I don't take them to get high. I take them so I can live my lifeet in some know of peace.

  • I was hoping it would be for me too and that it would fix my memory and speaking issues, but no such luck. I've got medication that are effective when I get the migraine, but when I have two attacks a day it ends up beeing allot of injections. What was your INR levels when the headaches disappeared?

  • When we have neorological symptoms (like you and me) we need usually a high INR, around 4.0. Read what prof hughes says on his November question of the month or his December blog.

    You need to get a high INR and a steady level also so you do not dip and get your symptoms back. We are very sensitive to changes in INR and when too low we feel at once. Have I asked if you are Lupus Anticoagulant?

    Get a Specialist also!

    Kerstin in Stockholm

  • I just got back from my GP now, and she was happy with my INR beeing 2.4. I had a print out of his blog and november question, she said she would discuss it with the immunologist. yes I am lupus anticoagulant.

  • You have to find a Specialist who must perhaps work together with a special headache Specialist but perhaps a higher INR and keep it steady will be enough.

    Read what APsnotFab has said.

    Kerstin

  • That's the difficult part. there don't seem to be any experts on aps in norway, they've bearly heard of it. So now I'm hoping that they will consider what I took to my gp today untill my next appoinment. I'm waiting for an appoinment with a heachache specialist. Hopefully that will happen before the summer.

    My INR is steady, bu it much to low after what I read here.

  • There must be someone in Norway who knows APS. How old are you? Man or woman? Where do you live? Do a research!

    I know a woman in Sweden who went to prof Hughes in London. She wanted the best there is.....

    We need someone who understands APS otherwise we are drifting somewhere .......

    Kerstin

  • Chowly, you will see as u read posts on here that a high INR is key to controlling APS particularly the awful headaches but a myriad of other symptoms too. I'm happy to e-mail what I have done to 'help' my consultants (see below). PM me because someone needs to listen to u 2.4 is fine for an old person with atrial fibrillation or post heart attack but not APS patients APS is a clotting disorder yet they are scared to raise our INR in case we bleed it's not a bleeding disorder!!! 😁

    I understand Zrhonda, exactly what ur saying. I'm so sorry u have been through all that.

    I was 11 in 1978, when one day I had a headache. That headache never went some days it was worse than others but always there.

    Mum took me everywhere but no answers were found. I have other conditions inc Lupus. In 2012 (34 years later) I had a positive test for APS and was put on aspirin. Within a week the headache vanished! I felt free it was truly amazing. Then two years later headaches returned. I was eventually put on warfarin with INR 2.5-3.5. That worked for a while but for the last 3 weeks I've been crippled each day with horrendous headaches. Or rather one constant headache. My INR was 2.3. Way too low. Increased dosage means it's now in range at 2.6. But I'm no better. I've done a lot of research, reviewed my notes, even plotted a graph of 18 months of INR results. There's enough info to demonstrate that I need a higher INR. I've sent it to the 5 medical professionals who look after me in hope someone will listen. I take Dihydrocodine 120mg tablets and paracetamol but react to many drugs so am limited with pain relief.

    I have no life and feel suisidal. I can not battle on any more. The pain and limited life is too much. We all need to make a stand and somehow get doctors to understand this condition before it's too late for some of us!!!

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