Sticky Blood-Hughes Syndrome Support
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Total meltdown

I have gone into total meltdown. I can remember vaguely how I felt last summer when I may or may not have had a TIA (all the symptoms but nothing showed up in tests and my inr was ok)which I gradually recovered from, , but the period from September to December is a total blank so can't remember how I was. Had a nasty virus over Christmas, which then lasted five or six weeks and Ihad to go to a homeopath to help get rid of it .

Since then my body has been throwing anything it can at me - headaches, spots on my face, viral symptoms (I spend the beginning and end of the day with a sore throat and swollen glands) appalling fatigue and memory problem, and aches and pains.. My inr has been around 4.0 so it is not that, although I do notice if there is a sudden drop even if it is still within range. Can't take plaquenil because I'm very allergic but take Mepacrine instead, but wondering if after 11yrs it is losing its effect.

My doctor suggested I may have depression but I don't think I have although am wavering over his suggestion of CBT to help me cope day to day.. I have to go back to see him next week but there doesn't seem much that he can do, although I am going to ask if he can suggest anything for the headaches. My 91yr old dad was put on beta blockers 20yrs ago and his migraines vanished so might ask about trying these.

I pace myself as much as I can and am going to have another go at losing weight but if anyone has any ideas of how to cope, especially with the fatigue it would be helpful.

8 Replies

Hi Panda

Where are you based?

Best wishes.



My migraines stopped when I was first put on Warfarin but returned 7 years later for no reason at all. I was then put on Amitriptyline and that stopped them again. I am now on Heparin, rather than Warfarin and I find that I have a clearer head now.



Yes its a shame you cant tolerate Plaquenil as that would hopefully have helped. Im like Dave and have Fragmin and find that it has helped with the headaches. I also use Topiramate which is another medication often used for chronic daily headaches. You could ask to be referred to a headache specialist where they deal with intractable headaches and have other medications that Doctors may be unaware of.

Have you had your thyroid and Vit D checked as these can also add to the symptoms you are experiencing?


Hi there, and yes to all of the above, and please as suggested above go down the route of a thyroid check is so often goes with the trio of disease, Hughes, thyroid and Sjogrens and untreated can make you feel awful.. and yes to Vitamin D also.. both these things apply to myself.. and I have had some success with both amongst other things. Mary F x


This is where a daily journal, if but a few lines, really helps with memory lapses. I had/have severe short term and long term memory lapses and so have learned a great appreciation of staying self disciplined enough to jot just a few lines to track pain, possible triggers, correlation of weather with pain, emotional ups/downs, stress, physical ups/downs. The information could be priceless one day, if only for you to know, "oh, I've been through this before and I (insert cure) to rid myself of it." Also, to reflect upon your own story often gives you strength, pride and courage when in need. It's been a tremendous aide to me. It could help you.



Hi. You are describing everything I felt when I was eventually diagnosed with Glandular Fever. It definitely added a new dimension to 'feeling tired'. I felt as if I was wearing heavy diver's boots all the time and getting up a flight of stairs necessitated at least two stops on the way. I could sleep soundly for hours on end and still wake up exhausted. (It had also been suggested that I could be depressed and I was advised that a change of job could help!)

It may be worth asking your GP for a Monospot blood test to eliminate the possibility that this could be the cause of your current problems. Contrary to common belief, it's not something that only teenagers get - I was in my 50s!!


Yes a very good point! Mary F x


As someone who had "mono? 7 times within 14 years (I put it in quote marks because Ithink lupus is a more probable diagnosis -- but this is from me, not a doc,) I agree that your symptoms sound very mono-like. Though with all of my "monos" my mono spot always read negative for the first few weeks -- it would always eventually turn positive.

My last diagnosed case -- when I was @ 21 -- was treated with a round of steroids. And boy! What a difference! After a week I could actually do things like -- go to the store, walk around the block -- even get a store job a few months later!

Good luck!



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