Sleep disturbance resulting in painful headaches

I was diagnosed with Hughes Syndrome 12 months ago. Since taking Warfain my migraines have lessened and are less severe. In the last couple of months I've been waking up more frequenly during the night or early morning with severe headaches. I have asked my GP to refer me to a sleep clinic but not sure they will understand APS. Does anyone else have this problem? I saw Prof Hughes a couple of months ago and he said there is a link with APS and sleep problems. I live in Scotland but I'm willing to travel to find the right clinic. I also have Sjogren's and Hypothyroidism.

52 Replies

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  • Hi there, I have pretty awful phases of sleep, but am not on Warfarin, I do binaural beat sleep files which I find helpful, however it is probably your headaches waking you up. My son has severe migraines and they wake him during sleep, maybe you need additional medication added in for migraine? Just a thought. MaryF

  • Sorry, this doesn't specifically relate to the OPs question. But re music stuff, I came across this. Really weird. Now the plants are talking to us. :-)

    Read the comments. My brain = scrambled.:-)

  • Yes! MaryFx

  • Ps I think this one is trying to tell us something:

    MaryF

  • Like that they were trying to dance as well :-)

  • Well they had clearly done more piano practice than me! MaryF

  • Its all a bit worrying. They can also paint better than me

  • Very funny Mary! The big elephant wants the pianoplayer to give him an applaude.

    Kerstin

  • It sounds a bit like when my son-in-law is composing for himself (but he does it on the piano.)

    Thank you for the music for bringing it to me.

    Kerstin

  • Ah Abba.

    Memories :-)

  • Yes!! It came so natural to say to you.

    Regarding sleep I usually listen to Audiobooks with some good actor reading. I sleep in a good mood. The books must be interesting and not to frightening.

    Best wishes from Kerstin

  • I also have disturbed sleep. In my case I had put it down to stomach acid regurgitation waking me. This undoutedly occurs but when I wake it can take an absolute age to get back to sleep.

    I have noted that dehydration can lead to headaches.

    I have recently been reading about various relaxation techniques to promote better sleep.

    Last night I turned out the lights and listened to this

    youtube.com/watch? V=peCO8A1npJI

    I fell asleep before the end, but slept really quite well. Accompanied by incredibly vivid dreams. I think I will repeat the exercise again, either with the same or different relaxing music.

    Overlap inposting MaryF. I have bookmarked some binaural beats as well.

    I could feel my head doing things last night but it wasn't pain. I am nerve deaf in one ear but in my dream it felt like my whole brain was flashing and I could hear again with my deaf ear.

  • Hi overnighthearingloss, I have no problem getting to sleep and have listened to relaxing background noise (when tinnitus is bad). I feel these headaches are related to sleep apnoea/disturbance,

    Avril

  • Thank you for your comment Mary. I have just started taking 75mg of Aspirin daily which Prof Hughes recommended. He also says I should be taking Plaquenil which is due to start in September but I'm trying to bring this forward as my 'flare ups' are becoming more frequent. My headaches always strike worse in my sleep. What are binaural beat sleep files?

    Avril

  • It sounds so good that you can consult Prof Hughes. So then you do not have to change doctor anyway. What is your therapeutic range set by Prof Hughes?

    Best wishes from Kerstin in Stockholm

  • Hi Kerstin, My therapeutic range is 3.5-4.5. I self test and have good control overall. When the headaches strike during my sleep, it doesn't appear to be a drop in my INR as it's always in range,

    Avril

  • Have you thought of doing a Heparin trial? Maybe try Fragmin for two or three weeks and see if it is better than the warfarin. Heparin works differently and just suits some people better. It may just be worth a trial.

  • Hi APSnotfab, I have thought of doing a Heparin trial. I just have to convince my Consultant. I'm sure Prof Hughes would back me up if necessary. I'm trying to bring my hospital appointment forward from September. Do you know why Warfarin is the preferred choice of treatment? Is it more effective for most people?

    Avril

  • Its cheaper!! its also because most people dont want to stick a needle in themselves every day too. They can be painful so obviously swallowing a pill is the easy option but then again what comes with that is the INR regulation, a certain amount of diet control and having to watch medication interations. Warfarin is a very safe drug and has been around a long time. It can be reversed easily too. If you are one of those that can keep a stable INR then there is little reason to change it but sadly many APS people have an issue with that. There are swings and rounderbouts to everything but at the end of the day in my view you do what you have to to control your symptoms. Quality of life has to come above everything or else life is pretty miserable and then you are into a vicious circle. What suits one person does not always suit another and I think the stats are that it is around 2-3% suit Heparin.

  • Thank you for this information APSnotfab. I self test and have good control. I agree with you that quality of life must come first. I've missed out on so much due to this condition. I almost missed my son's Graduation last month which would have been awful. I'm exhausted fighting my case with Doctors,

    Avril

  • I also have APS, thyroid issues and Sjogrens, etc and have major sleep issues. I usually only get headaches when my Coumadin/warfarin level is out off.

  • You need a good rheumatoid doctor and a sleep study done. Many of us have sleep apnea.

  • Hi NanaPam, I have 2 good consultants that understand Hughes Syndrome. They have given me a full MOT since diagnosis so I'm hoping they will approve a sleep study. My husband gets quite worried when he witnesses me in my sleep and my breathing stops. Prof Hughes suggested having a sleep study done so now I have to get my Docs to approve and arrange it. My INR is not the problem as I self test and it's within the therapeutic range when these headaches strike,

    Avril

  • Good luck. I hope you get the test approved!

  • Agree with Apsnotfab, if addition of aspirin does not help, consider discussing w Prof Hughes a trial of heparin in place of the aspirin

  • Hi Salty, it's reassuring that yourself and APSnotfab have suggested a trial of Heparin. I am certainly going to push for it,

    Avril

  • Hi AvsG,

    I agree with the comments about trialling something other than warfarin. I have fought for 16 months for a change from warfarin due to many side effects and am in the process of change, probably to fragmin. Warfarin seems to be used as its the most cost effective and has a long clinical record of being tried and tested, but and I will continue to stress this,it is not the answer for everyone with APS and there are other options. Good luck x

  • May I ask what sideeffects have you discovered on warfarin? I am myself on warfarin and selftest. I have also Lupus Anticoagulant.

    Best wishes from Kerstin in Stockholm

  • Do you know if Fragmin has an antidot like warfarin has in K-vitamin? Kerstin

  • Hi Krysty, I don't seem to suffer any side effects with Warfarin and it has improved my quality of life. The night time headaches are increasing and I just want find the cause. If Fragmin deals with my headaches better then I will push to be changed? I used Tinzaparin throughout my pregnancy and had no problem injecting myself,

    Avril

  • Hi

    My understanding is that heparin only stays in your body a short time, which is why you inject every day. So no antidote needed. It is not good for bones/osteoporosis though, which is why warfarin is the drug of choice. I have not had any side effects from warfarin, so like Kerstin I am interested in what side effects people have.

    I agree you may need a migraine tablet, but I just use cocodamol to help me sleep with the pain. Especially when I had 2 dislocated shoulders!

    I would ask Prof Hughes for advice.

    Good luck with it all

    Ann

  • Thanks Ann, I'm not due to see Prof Hughes until next year. My Doctor in Scotland knows him and I will ask her to write to him if she has any doubts about a trial on Fragmin,

    Avril

  • Actually Profs Hughes and Khamashta did a study comparing Fragmin and warfarin and there was no difference for side effects on bones. I have been on it for 3 years and my bone scans have not budged and others on here report the same. prof Hughes likes to report that one of his patients who is the wife of a specialist themselves is one of his longest heparin patients and has been on it for many years with no side effects. The new LMW heparins are not the same as unfractionated heparin which is what can cause the issue with bone loss. Also quite a few people take steriods and they cause issues with bones not the LMW heparin.

  • That's reassuring to know APSnotfab, thank you for this information,

    Avril

  • :-D

  • I am diagnosed APS and hypothyroid as well, and I was on warfarin for a blood clot after ankle injury for about 6 months until Feb 2014. During that time I also found that I suffered from terrible morning headaches, which I attributed to the warfarin, since once I came off the headaches stopped completely. I would wake up from the headaches at about 4:30-5 am...try to hydrate and take the max Tylenol allowed for the day (some doctors don't allow any at all but my doc said two caps max per day would be OK for when the headaches were really bad) and then I would go back to bed hoping the headache would subside. Sometimes they did and sometimes not.

    My range for INR was targeted at 3.0, and was fairly consistent. I certainly never dropped below 2.0 more than once or twice in six months, and I was tested on a consistent weekly basis. I found I also had a lot less energy while on the warfarin. I know some folks do not suffer any side effects from warfarin, but unfortunately I did.

    A friend of mine has similar side effects when she is on the generic and not brand name (Coumadin or Jantoven) She thinks perhaps the "fillers" may vary from generic to the brand name drug. It may be worth a shot for you to get the brand name specifically prescribed. I was able to go off it for now so my headaches are gone, but if I need it in the future I plan to ask for the brand name to be approved to check if there is a difference for me.

  • Have I understood you right. Have you stopped warfarin and have no other anticoagulating drug? Do your APS-doctor agree to this?

    Probably I have not understood correctly as you write of the generic an brand names .

    Best wishes from Kerstin in Stockhom

  • Hi Kerstin - yes, I was taken off all drugs. I am a bit concerned not to be even on aspirin, but I saw two specialists in the USA here that both felt strongly that b/c my clot was due to an acute injury and not "unprovoked", then I should not take anti-coag. drugs, despite having tested positive for APS in Feb. and then again in May. One Dr. has much more experience then the other in APS, but both did not feel I was automatically at risk of another DVT in an unprovoked situation. I am not 100% in agreement though, especially based on my reading up on here, and paying attention to the folks advice on this forum...however since I am scheduled to begin heparin and aspirin soon for a planned egg transfer in the hopes of finally getting pregnant, I did not fight them too much on it. I did recently experience an increase in pain in the leg I had a DVT in last Aug (which led to warfarin and ultimate APS diagnosis once I came off and had routine testing), but I got checked at the ER with ultrasound and got the all clear (no new clots found). I took aspirin for a few days to put me at ease and the pain seems to be lessened at this time. I am now only about 2 weeks out from starting all my meds for the egg transfer, so until then I am just paying very close attention to how I feel, since I know now what a DVT in the leg feels like. It's not ideal and I have resolved that after my pregnancy, I will argue strongly to at least be put in aspirin daily, if not something stronger. It has been difficult to say the least to get the Dr's to listen/pay attention even after my APS diagnosis. I actually had my hematologist's head nurse tell me the other day hen I called "how incredibly rare it would be" for me to be suffering any kind of residual pain from a DVT that was found in Aug 2013 and for which I took thinners. I was a bit perplexed that a head nurse was unaware of how often DVT pain can linger. Sigh!

  • All I can say is do not let these doctors gamble with your life. All I can say is that drs. In the US do not like patients taking blood thinning medications, it to much of a risk for them. You need to read up on Hughes, sticky blood, APS whatever you want to call it. The doctors here do not know enough about it. They can treat the blood clot but they do not know about the syndrome. The part of this disease that everyone on the website deals with day after day. Look I live in the US & i was stupid I believed in the doctors. They failed me terribly and I am sure I am not the only one. When your blood is thick lots of things can happen in your body, not just DVT. Organs, muscles, nerves, the brain etc... Get affected. You need to read. Hopefully soon you will have a little growing inside you. It is important to have a OB-GYN who has experience with positive APS patient. Why people miscarriage is because the baby can't get the blood & nutrients it needs. You said you are having a embroyo implanted? I know that is expensive & emotional having gone through it myself, so why not have the best medical care for you & your baby. You want someone who is going to monitor your blood. Please please read it is important. Designer16

  • Hi You are aware of your difficult situation but the doctors obviously do not know what APS is.

    I can only wish you good luck with everything!

    Kerstin

  • They took me off warfarin too when they didnt think I had the disease and I had a stroke! Please be careful. For the sake of a baby aspirin you could at least have some protection.

    My advice to you is find an APS specialist who knows about this disease and treats patients daily, not a doctor that dabbles in it with one or two patients. This after all is not only just your life but your future and could be your little one and your family that would be robbed if they get it wrong. xx

  • Hello, I am new to this forum so please forgive my input if it is not welcomed. I have APS and am on blood thinners for life due to there is always too much of a risk of blood clots. The warfarin helps keep my life safe with a hope of no more strokes, PE, DVT etc. Way back when I was young and in the child bearing years I had many miscarriages and and Ectopic that burst yet God allowed me two sons. I'm so thankful to have them in my life, they are my life. Please be safe as you are off the blood thinners. My heart and prayers lead your way. My doctors have impressed upon me that the blood thinners literally spare my quality of life as this is a serious disease. Just my two cents. Please be safe

  • Thanks to all that have provided their insight. I called my IVF Dr. Today and expressed my concerns at not being on nay thinners and she is going to discuss with my primary care. Its likely I will at least take aspirin now even before I get put on meds for egg transfer. The thing that seems difficult is verifying a Dr. Is an actual bonified specialist for APS. Each Dr. that I have seen all seem to feel they are qualified to treat me simply because they know the diagnosis. How do you tell a medical professional that they simply don't cut it? Very hard to get that across...but I will keep fighting. Has anyone in the US on the board here found a good specialist in the northeast? Again I did see one and thought she must know enough but she is someone that said I don't need anticoagulation...so now I am back to my search. Thanks again to all and I appreciate the well wishes!

  • Hi again, I Think you shall try to find a specialist in your area. Then I am not the right person to give you advice in your delicate situation with having an egg transfer.

    I hope some other member on here can give you some name or you can cheque at apsaction.org (specialists from different countries)

    I wish I could give you more help but I think you are determinded to find out a good solution. I think you will not give up. Good luck to you

    Hugs from Kerstin

  • I thought I would post due to being woken with a severe headache which has now largely cleared.

    I fell asleep early yesterday evening which caused me to miss taking my evening meds.

    I take blood pressure medication at night due to having previous issues with light headedness if I took them in the morning.

    I went through my usual routine when my head was banging. Trying to work out what I had eaten or drunk differently that may have triggered the headache. Dehydration? - NO.

    INR? Unlikely as it was above range a couple of days back.

    Then I tested my blood pressure. BINGO. It was high.

    Feeling really sick by this point, I took the meds I had missed taking last night due to being asleep including the blood pressure meds and now the higher reading is showing 25 points lower.

    It could be worth you getting a blood pressure monitor. If you do, get the full arm variety instead of the cuff monitor as they seem to be more precise.

    At least it might rule out another possibility.

  • I pressed the wrong button again! The answer about headache was meant for you. See below.

    Kerstin

  • Thank you overnighthearingloss. I have a blood pressure monitor similar to my GPs. My BP is slightly high but Docs don't think it's high enough to treat with medication. I did wonder about this being the cause but have ruled it. I keep a diary of INR, BP etc but there's no link there. I'm convinced my headaches are caused by Sleep Apnoea. I now have appointment at Sleep Clinic next month,

    Avril

  • Well at least it was another possibility that can be ruled out then?

    Good luck with the sleep clinic.

  • Hi,

    Try to take half of the bloodpressuremedicin in the morning and the rest in the evening. Let your APS-doctor know about it first! I do that. Most of it I take in the morning. I monitor my bloodpressure myself every day since 10 years and i also selftest. I have had very high bloodpressure and now pulmonell hypertension.

    High bloodpressure goes with APS. Warfarin has lowered it and made it steady.

    Best wishes from Kerstin in Stockholm

  • Thanks Kerstin,

    I understand what you are saying. I will watch for a while and see if I need to adjust anything again.

    I have had to make adjustments in the past so I know it is possible that I may need to rejig again.

    But I don't really want to change things if its just a one off event. I have had a slight headache for a few days now, but nothing significant to be really concerned about, but maybe my blood pressure was creeping up.

    I will monitor it for a bit now just in case.

  • Make it a habit to monitor your bloodpressure each day as you have a machine for it. It is really important to have a stabil bloodpressure when you are on warfarin. When my warfarin is in range my bloodpressure is rather low. High bloodpressure can lead to pulmonary hypertension with this illness.

    Kerstin

  • I already that that badge as well myself but its been pretty much under control.

    I don't usually monitor my BP unless I feel there is a need to.

    I have the machine more as a back up. But I will check for a while if the headaches start up again.

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