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Sticky Blood-Hughes Syndrome Support
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Poor sleep, horrible headaches, muscle cramping in legs

If anyone has any suggestions as to what might help with making me sleep at night, I will be forever grateful. I have been having problems for quite a long time, but it has gotten to the point where I have at least 1 or 2 nights a week that I don't sleep at all. I will be awake for almost 24 hours and then I will only get 3 or 4 hours sleep at the most. I am already taking the sleep aide Lunesta at night. I have spoken to my general doctor about this and of course have gotten the speech..go to bed at the same time every night, no caffeine after a certain time (I don't drink anything with caffeine) . I also have sleep apnea and use my cpap machine every night. I have also been having the worst headaches I have ever had in my life the past couple months. We have been treating them like they are migraines, but taking Imitrax (50mg) and Naproxen (500mg) for them is not doing anything at all. At my last doctor visit, they ordered some lab work to check my muscle enzymes, check for Lyme and something else that I can't remember. They also ordered a CT Scan on my head, which my lovely insurance denied. All the lab work came back normal levels, except my sed rate which was only slightly elevated. The doctor decided to try treating the headaches as if they were being caused by a chronic sinusitis, which could be the problem, but that wouldn't make me not be able to sleep would it? I am not on Ceftin (500mg twice a day) and a nasal spray. Not sure if it is working or not, but I think the antibiotic is giving me a yeast infection..yay...just what I need on top of all the other things I have going on. On the bright side of things...my knee replacement I had done back in March seems to have been a complete success!!

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Hi, congratulations on the knee! Regarding sleep, I do get this normally if I have a flare or something going on, however the biggest thing upsetting my sleep was in fact my inadequately treated thryoid, once I sorted this my sleep was an awful lot better! Are they keeping an eye on our INR as clearly the headaches might be worse if your anticoagulation is not at the right level? Regarding yeast infections, a lot of people including myself take a daily strong probiotic to replace and maintain good levels of gut flora, however do check with GP before

adding anything new.

i also do meditation type sleep files/cd's for sleep if ill or particularly restless. MaryF

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That is a very good question about my INR...I don't even know what mine is at the moment because they don't have me checking it at home. My last hematologist has moved to a different town about 50 miles from here, so I have to find a new one and start all over. I will have to call my family doctor on Monday and question her about checking my INR for me and also talk to her about a probiotic. I certainly would never add anything new without checking with her first. I have never tried meditation for my sleep problems, I do however have some soothing white sounds and other things downloaded on my phone that I forgot about that might just help me fall asleep. Seeing as it is almost 4am here in the States, this might be a good night to try that.

Thank you MaryF for your suggestions...


I also remember we had a chat about asking your doctor to help you explore the options regarding other thyroid medications, as sometimes people do better on the natural desiccated stuff and in the USA it is not unusual to be on this if the other medication is not working, an untreated thyroid can cause terrible sleep disruption. It might be worth looking into. I buy my probiotics from the local health food store, the strongest ones on the market and I keep them

in the fridge

Also as mentioned previously it is essential when your GP/consultant checks your INR that also your thyroid levels are looked at plus your levels of vitamin D, iron (ferritin) and B12 and looked at really carefully.

. MaryF


I have been on thyroid medication for many years. In fact I just had my thyroid levels checked about 3 weeks ago and they were perfect. I really do have look into the natural desiccated stuff though. My GP has me on a Vitamin D supplement, iron tablet every day and also I get a B12 injection once a month. I have such a long list of things to discuss with my GP when I call the office Monday morning..I won't know where to start.

Thank you for taking the time to give me some great advice MaryF


You do sound as if you have a great GP. MaryF


She is actually a Physican's Assistant. Not a full GP, but I actually trust her more than my GP. If she doesn't know the answer to my questions, she will find the answer and she isn't afraid to runs tests if she feels I need them done or send me to a specialist.


Unfortunately with the Thyroid they often only do the TSH test it is really a good idea to get them to look at your T3 also and Reverse T3 as if that showed up a wider picture it would give you more scope to ask for the alternative, just and idea. MaryF


I know when she ordered the Thyroid testing, there was there T3 and T4 along with the TSH test


Hi Becca,

We have spoken before. Glad your knee replacement was a success!!

Do you have high bloodpressure Becca?

Have they done an Echocardiograhy with doppler as you have sleep apnea? They tested me for sleepapnea as I have PAH (Pullmonell Arterial Hypertension) which go with APS and often high bloodpressure and heart insufficience (I have leaking heartvalves.)

Hope i do not worry you (but I am sure i do) but you should have a real good APS-doctor who could give you a selftesting machine as the warfarin has to be fined tuned unless we feel just awful . As we have too thick blood so much is depending on the anticoagulation. I selftest every second day and I wish you could do that too.

Cross my fingers that you soon can talk to that APS-doctor and that he or she will take real good care of your APS.

Kerstin in Stockholm


Hi Kerstin,

I am really glad my knee surgery was a success too this time!! The surgeon released me after just 6 weeks, which did not happen the first time I had the same knee done. I still have some pain, but nothing like I had before.

No I don't have high blood pressure. In fact, my blood pressure has been running low for the past 6 months or so. I have been having a problem too with my legs swelling really bad for the past 9 or 10 months too. They have done dopplars of my heart and my legs to see if there are any blood clots anywhere and found nothing. I do know that I have to find a good APS doctor, just can't locate one that isn't like 150 miles from my home. And now that my hematologist moved away, I have no one, so my search begins all over again. I really do want to be able to test and see what my INR is. I am not on anything at the moment for anticoagulation though, but my GP is aware of the APS diagnosis, because after my surgery he just about had a fit because the surgeon had only put me on an aspirin twice a day instead of a blood thinner. Didn't take him long to change that to Lovenox twice a day. But that was only for 6 weeks. Once I was up and moving around normally he stopped it.


Hi Becca,

Glad that you have done a doppler (hope it is an Echocardiography) on your heart.

Good that your bloodpressure is not too high but I hope not too low either.

You know Becca, that I am not a doctor, but what I have learnt you should stay on an anticoagulation drug. So you were put on Aspirin after your operation and then to Lovenox twice a day for 6 weeks and now he has stopped it for good.

To me it sounds not good at all. I hope someone who knows more of Medical issues can help you. I should go to a hospital if you have that bad headache and are on no anticoagulation at all.

Sorry if I sound negative but I believe you must do something. I think your doctors know nothing of APS!!!

Can you buy support stockings for the leg swellings?




Yes it was an Electrocardiography Doppler that was done. It is strange, many years ago I had very high blood pressure and took medication to control it, I don't know what changed but about10 years ago it dropped and I was taken off the medication and have never had a problem with it since.

I know, I was thinking the same thing about being on an anti coagulation drug. That is why I am searching for an APS doctor closer to me so I can get better care with it. I mean, my GP does what he knows but it is obvious he doesn't know very much about it. Yes that is right, my surgeon had put me on Aspirin after my surgery, I was in the hospital for 5 days and then transferred to a rehab facility for inpatient physical therapy where my GP took over my care and he took me off the aspirin and put me on the Lovenox for the next 6 weeks.

I have already called my son to see if he could come and drive me to the hospital so I could receive treatment for this headache. I did get a pair of support stockings for the swelling in my legs. Unfortunately, when I put it on my leg I had the surgery on, it causes extreme pain in the shin bone where the surgeon has the piece of the replacement placed...so I can't wear them. I am taking tons of fluid pills everyday to help rid my body of the excess fluid. It is starting to help a little bit.,


Right your going to think I'm stupid but this works close your eyes and count 1 banana 2 cabbage 3 strawberries 4 broccoli etc fruit then vegetable your head gets so confused whether your on an odd or even number a fruit or a vegetable next thing you know your asleep x


Might just have to give that a try..thanks


Thank you for that long answer Becca,

Perhaps you could ask the doctor if he thinks it might be good with at least a low dose of Aspirin. Perhaps it will help with the headache also. Do not forget to tell him your APS-story and what has happened and that you are not on any anticoagulation at present.

You are really trying hard. Good that your son will help you also.

Earlier in life I had low bloodpressure. 15 years ago I had very high bloodpressure and was on 3-4 different bloodpressure/heart drugs. When I started Warfarin in 2011 my bloodpressure started to go down. I now have normal bloodpressure but still take those drugs. The bloodpressure has to do with APS. I have two separate Machines; one for the INR and one for my bloodpressure.

Very good that you have a low bloodpressure now. Good luck with everything Becca!



I just got home from the Emergency Room at the hospital. The doctor there could only treat the symptom of the headache, which was only to give me an injection of a very strong pain medication. He said, which I knew he would, I will have to discuss with my family GP the low dose aspirin thing. He didn't even know what I was talking about when I mentioned APS. I had to explain to him what it was. You can really tell I am from a very small rural town.

My son tries his best to help me when he can. I am really trying my best, but sometimes it just doesn't feel like I am doing enough.

Thanks Kerstin...you and everyone else on here have made me feel so welcome and have helped me to be asking the right questions.



Re the cramping in your legs-have you tried Tonic Water? (without the Gin!) I use the sugar free one and generally have a glass each night to help with cramps. the quinine in it is what helps. It will take a few days to kick in. Hope this helps.


Thanks for recommending the tonic water. I have tried it and my stomach just can't seem to tolerate it for some reason. I have even tried different flavored ones and still can't seem to drink it.


I too used to suffer with severe leg cramps. I have been diagnosed with APS and am on daily Cumadin. I researched cramps after getting inconclusive, vague and unhelpful answers from my GP. I discovered that simply adding Calcium-Magnesium tablets to my diet eliminated the cramps. I know many Brits have a real aversion to supplements. but it seems contrary to common GP recommendation for things like pre-natal vitamins, for example. We in the States love to tweak the nose of Big Pharma by daily taking our vitamins.

As a personal test, I stopped the vitamins and the cramps returned. I resumed the vitamins and the cramps vanished. I will continue on them until they toss my ashes out to sea. This is not a medical recommendation but rather a telling of my personal experience.


I never thought of adding Calcium-Magnesium to my diet. I have been doing some reading about what can help with leg cramps, and that does seem to be the general consensus as to what helps. Thanks for your input!!


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