'Funny Turns' and Hughes Syndrome

Having been diagnosed with Hughes Syndrome in 2002 (main symptoms: numb fingers, blind spots, migraines, dizziness, unsteady gait, speach and memory problems) and having seen Prof Hughes, then and subsequently, I was tried first with 75mg aspirin (no effect), then Plavix (no effect), then 5,000IU Fragmin od (good effect), followed by warfarin with INR 3.8 to 4.2 (good effect). I had abnormal liver functions since two bouts of hepatitis in the 1990s, no cause found at the time but Prof Hughes suspected ischemic hepatitis. After starting warfarin liver functions returned to normal. All well and good.

However, migraines returned at Christmas 2009, after 7 years without any, and in Feb 2010 I started to get 'funny turns'; a sensation of being pushed sideways, or rotated, or the floor bouncing, followed by dull headache, dizziness, buzzing in the ears and perceived weakness in the legs and arms. I was started on 10mg amitriptylene, which stopped the migraines and, it seemed, the 'funny turns'. However the 'funny turns' returned in July 2011 and have been diagnosed by a neurologist as 'atypical migraines' but they did not respond to increasing the dose of amitriptylene. I saw Prof Hughes again in February this year and he agreed with me that the 'funny turns' were more likely to be TIAs. He suggested using the 5,000IU Fragmin when I'm having one of these episodes, as long as my INR is not too much above 4.0. I have tried this regime with good effect. Even more interestingly I did my INR test on Monday, this week, then forgot to take my warfarin, so that by Tuesday evening my INR had dropped to 2.9. I took 10mg of warfarin (usual dose is 6.5mg) and I also took a 15,000IU dose of Fragmin, followed by 8.0mg of Warfarin and a 5,000IU dose of Fragmin on Wednesday evening. The result, during the middle of this week has been remarkable, a very clear head and no 'funny turns' at all. My INR is back in range now, so I have stopped the Fragmin; the result, a return of dull headaches and dizziness.

So, for me, I feel much better on Fragmin than warfarin but I would need to have 15,000IU of Fragmin od to be able to stop taking warfarin altogether. Consequences: looking like a blackberry due to the bruising of effect of the injections and, I understand, long term Heparin use causes osteoporosis.

I will be seeing Prof Hughes again in the autumn and I will discuss this in some detail with him but I have written to him, today, to give him the above information and to ask for his further advice.

Best wishes to all.

Dave

26 Replies

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  • I am pleased that you have a good habit of note taking and diary events and treatments which do and don't work for you, also pleased that you have a good point of contact with the right medical person. Mary F x

  • Thanks Mary

    Having just re-read my blog I see several typs, so head is not talking to fingers properly again, grrrrr.

    Dave

  • Never mind, i do the same, and it is readable, if it is annoying you i can go in there and correct them if you want! MF

  • Thanks Mary.

    I've edited and corrected the blog; caught all the typos I hope, phew.

    Dave

  • Hi manof.

    I just change from xarelto to a heparine injections .i keep my foggy brain a problems with memory altough i have having clexane (LIKE FRAGMIN) only 2 weeks...maybe is too soon to check tbe positive effects.

    My question is? Is it posible to have heparine for ever??? Is it forbidden because produce osteoporosys???if warfarin is not working is able to have heparine for ever?...how long have you been taking heparine? Do you feel quite better since you have heparine?? Have you have brain foggy, neurology problems,, painfuls on your muscles ..?

    You tell me your experiencie like you have been with prof huges.it is suppost you got the best treatment...

    Thank you for your answer

    Salva

  • Hi Salva

    I have been on Fragmin for over two years and I am much better than I was on Warfarin. I have been told that I can be on Fragmin for life and that modern Heparin, like Fragmin, does not cause Osteoporosis.

    I have no foggy brain and I feel well most of the time.

    Dave

  • Hi Dave,

    Yes it is always good to document everything as we go along, no my hands, tongue, legs,...everything is like they have a mind of ttheir own...& love to embarase me!! I wish I could string a sentance together at mo'!!!

    glad Fragmin is working for you, but it has costs :( warfarin is the best option....but I'm struggling to keep the inr balanced too......wish their were other alternatives for us?

    Had the injections when I had an operation a few years back....wow did I balloon up & bruise!!

    Hopoe you find that balance soon, Sue :)

  • Thanks Sue.

    Yes, I used Fragmin when I had heart surgery and I felt better on it than on warfarin, then too.

    Dave

  • Hi

    I would see if you could change to Fragmin if it were me. Live for now!

    Karen xx

  • Hi Karen

    I agree and I've written to professor Hughes to ask him that very question.

    Dave xx

  • Hi - it was good to hear that someone has same symptoms - my liver enzymes are up and was told it is flare-up of Lupus, however, trying to get the INR levels this week been a nightmare with dizziness, pins and needles and headaches, I tested myself and it was over 4.1 so looking at past record of INRS took the dosage and then it was 3.9, slowly recovering and back to outpatients for test from arm. I will test before going to make sure that the machine correct.

    What is Fragmin? I have been taking Aspirin for years and then had splenectomy and was told to withdraw from shortly before op and then lack of communication, nothing to prevent, then put on Clexane and then had a mini tia which caused loss of vision temporary. Went onto Warfarin and find that the INRS since have been up and down, never been so out of control, then went to ST remain on Warfarin and start Clexane if INR below 3 which I have done, but still experiencing symptoms when INRs go out of range either way.

    I have to have a messenteric Artery unblocked, but it shocked me the other day when the consultant down here said it was dangerous!!! I was told by ST not to stop Warfarin should have this special procedure yet here they said most likely stop, but with my clotting problems being really bad - its a nightmare.

  • Hi Daisy

    Sorry that you are suffering like me.

    Fragmin is simular to Clexane.

    Best wishes.

    Dave

  • Hi Dave

    Sounds like you're getting closer to feeling better, I do hope so!!

    I hope Professer Hughes agrees and lets you go with the fragmin.

    Every drug we take (I rattle when I walk), has its upsides and downsides, it's a case of balancing and surely if somthing helps so much its worth the risk. Our bodies and we know when they are not right.

    Hope you have a better day today.

    Take care gentle hugs love sheena xxxxxxxxxx :-) :-) :-)

  • Thanks Sheena

    You are so right about us knowing our bodies and when they don't feel right.

    You take care too and gentle hugs XXXXXXXX

  • I would talk to Dr Hughes. I am pretty sure he feels long term LMWH is safe to use. If you are feeling better on it, keep notes on this and explain to him. See if he will do a 3 month trial just so you can see if it really is better for you.

    The brusies aren't bad. I am taking Fragmin daily now for a month and most injections don't bruise at all. My pudge there, muffin top and stretchmarks from having twins is def looking much worse than the bruising!!

    If you don't like the effects or its not working, or brusing you too much you can always transition back.

    Personally I will take the shots over the instability Warfarin has in me, and the dietary restrictions and alcohol restrictions, etc....Plus no more testing your INR!! To me, it is freedom compared to warfarin.

    Regardless, I hope you feel better soon and the effects you are feeling now go away and you get back to your good old self fast.

    -Kxx

  • Thanks Kristina

    I agree with you. I'm cool about doing the shots, as long as they don't make my bones crumble away in the long term.

    Dave xxxxxxxxx

  • Hi Dave, I too had problems with taking warfarin. I was on Fragmin 10,000iu daily and had a good response. I then switched to Warfarin. I found I just could not keep my INR in range. I was having pressure headaches, balance and dizziness really bad and I now know these were migraines.

    After awhile there was a point where my INR plummeted, my symptoms soared and I was injecting with Fragmin too. I just thought "what am I doing?" I knew I was better on the Fragmin and I was so worried I was going to have another Stroke.

    I saw Prof Hughes again and he agreed I should just stick to the Fragmin 10,000iu daily. It took me awhile after the Warfarin to stop bruising as usually when just on Fragmin I don't bruise (just the odd one or two).

    Prof says Warfarin and Fragmin work in different ways and sometimes some people are better suited to the Fragmin. He and Prof Khamashta did a study comparing it and it came our pretty well. The low weight Heparins do not have the risk of osteoporosis like the other Heparin does.

    They are now in clinical trials for oral Heparins so I am not worried that I will be on Fragmin long enough to do any long term damage. Like everything in life we have to weigh up and balance quality of life and risks. I trust the advice I am given by one of the most caring Doctors I have ever met. If he tells me its time to change onto something different I will listen to his advice.

    I hope that reassures you.

    BTW, After a 600.000iu Vit D injection from my GP I found I was far less likely to bruise and the bruising I had disappeared much quicker. Coincidence? Maybe, but I don't think so.

  • Hi HughesPatient

    Thank you for this. I agree with you that Prof Hughes is one of the most caring Drs you could wish to meet. I have written to him and Kim, his secretary at London Bridge, has said that she will pass it on to him; so I await his reply.

    Good news too about the osteoporosis, or lack of it, with LMWH.

    I understand that in the USA the oral heparin has given them a lot of side effects issues, with people not being able to metabolise it so ending up having it in their systems building up until they bleed to death and also liver issues too.

    Prof K talked about the trials with me in Feb 2010.

    Let's keep in touch and I think you might find that those symptoms were TIAs rather than migraines; Prof H feels that is the case with me and your symptoms and mine sound very, very similar.

    Very best wishes.

    Dave

  • I've been seriously considering LMW Heparin instead of warfarin as I too find it extremely difficult to keep a stable INR (test myself which helps) and I always feel better on Heparin. I saw Prof Hughes and I felt reassured that the osteoporosis was not so much of an issue. What concerns me more is the fact that Fragmin dosage is related to weight and that it only seems to last 12 or so hours. I do find that I feel better on it though. At present I take warfarin and add a 5,000 iu injection if 3 or below or if I am having worrying symptoms.

    This way of managing treatment seems to be more common now and I wonder whether it isn't time for people with this syndrome to be given more recognition e.g. specialist nurse like a lupus care nurse etc... We all know our own bodies and what we need I think but it would help if local medical services were to recognise that more....

    The other thing is that Prof Hughes explained to me that there are different pathways in sticky blood i.e. thrombin clotting mechanism, platelet function and blood vessel problems. I suppose it makes sense that Warfarin deals with the clotting process and Heparin with the platelet function but it may be more complex than that.

    I can't quite make the move completely to Fragmin but I know people on it and they seem to do very well by and large.

    Best wishes to all, E

  • Hi Eagle

    Like you I self test and self manage my warfarin. My INR has periods of good stability, maybe for a month, then it either goes high or low, for no apparent reason! Also like you, I add 5,000IU of Fragmin if my INR goes too low, 3.3 in my case. I also take 75mg of Aspirin od in the morning.

    I know that if I am on !5,000IU of Fragmin, with Warfarin stopped, which I have been several times for surgical procedures and investigations, I feel at least as good and often much better than on warfarin. I wonder whether it is the stability of the anticoagulation on Fragmin that makes for a better apparent control of symptoms, or whether it is the mecahanism of the the way Fragmin works compared to Warfarin.

    Like you, I am having difficulties making that total move to Fragmin from Warfarin. Do you bruise a lot at the injection sites?

    Best wishes and regards.

    Dave

  • Hi everyone

    Well, I've had a letter back from Prof Hughes today and he says, "...Your expereinces are something I have seen in quite a number of my patients. Indeed one or two definitely feel that Fragmin is best for them and would prefer to be on Fragmin alone long term (although this is impractical for most). Do not worry about the possibility of osteoporosis, this is not a problem that we have seen with the use of low molecular weight Heparin."

    So, I'm now going to discuss this with my GP and perhaps do a trial of 15,000IU of fragmin per day and stop the Warfarin, as I would for surgery etc., and see if my 'Funny Turns' stop.

    Best wishes.

    Dave

  • I wish you the best Dave! You have been a bit of an inspiration for me personally. You are the first person who described the same symtoms that I am having.. to a tee! I am hoping to start some different anticoagulation myself...either an addition to Coumadin or Lovenox alone.

    I will be following your progress !!!!

  • Thank you pumpkincake.

    I wish you the best too and I hope we can compare notes about our problems.

    Best wishes.

    Dave

  • Isn't it sad though, that we as patients have to suggest the course of treatment.

  • Yes it is Les.

    We seem to be the only people who have the knowledge, gained painfully, to treat ourselves; providing the Drs will listen to us.

    Best wishes.

    Dave

  • Hi all

    I've been on Fragmin 15,000IU daily and stopped Warfarin for over a month now and there has been no improvement in my 'funny turns'.

    I have seen a new Neurologist and he has ordered a CT angiogram of my neck and brain and an MRI/MRA too. I had these on Thursday and I am now waiting to get a follow up appointment with him.

    I am still getting scary 'funny turns', including being in a building, doing a survey, last week when, for a second or two, the wall appeared to be falling towards me!

    I am getting lots of tingly numbness and stiffness in my right hand/arm again too and a dull headache. Some Drs have even refused to believe that this tingling is APS and say it's anxiety.

    I wonder how we all cope with APS sometimes and more and more I just feel like crying all the time. I work hard in my surveying practice and try to save for retirement (6 years away) but I wonder, sometimes, if I will ever make it that far.

    Best wishes and love to everyone.

    Dave

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