Re: Blood Flutters with Hughes Syndrome

Hi Everyone,

I just wondered if anyone has experiences of fluttering of blood within in the body. I am not really sure how to explain it.They last a few seconds, like a surge of blood, pulsating, like a heart beat. I did say it to the consultant but she didn't know what I meant. I just wondered if anyone could shed some light.

Thanks a million,

Catherine

29 Replies

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  • Hi Do you mean an eptopic heart beat? I have this, it feels like butterflies in my chest and every so often especially when relaxed a big random heart beat. You can be checked for this by wearing a 24 heart monitor recorder which the haemotology dept at hospital normally does.

  • Hi there,

    They did find a heart murmur if this is the same thing three years ago. I did have a 24 hour heart monitor and a echo but nothing showed up.

    It is mostly in my body though that I feel this blood surge at times. It is weird feeling like I can feel my blood kind of push through the veins mostly in my arms, legs, neck, hips, not so much heart. Did you ever get this?

    TC CX

  • I get that - I describe it as electrical surges in my head - unnerving sometimes. I recall one as far back as the early 70s & my first husband, but my memory is another story. I'd get it with the sound of his car coming around the corner.. . weird or ?

  • A usually benign atrial fib runs in my Father's family. My Father was an ER doc.he knew what an a fib felt like, but he constantly searched for a good description of the feeling so he could better communicate with his patents. Finally, one super busy night - flu season-- a burly truck driver looked up from his gurney with an embarassed look on his face. " Doc, I know this sounds crazy, but it feels like I have a gopher tuning somersaults right below my breast bone."

    My Father, who was exhausted, looked up with a rapt look on his face, , " Thats it. THAT'S IT ! PERFECT!". Then he walked away to get a pencil and paper to write it down and put it with his personal notes, leaving the patient to wonder who was crazier--himself or his doctor.

    So, does it feel like a gopher( do you have gophers where you live-- insert mole) turning somersaults? It so, get it checked out but this can be a relatively benign condition. My " gopher" is pretty active tonite. it is 2:30 AM, unable to sleep, with a fever of 101 and a very sore throat, mildly nauseus -- these are the circumstances when my gopher wakes up. He'll go back to sleep when I start antibiotics and get the fever down. ( Strep throat is making the rounds here.)

    Gina

    Let us know--

  • Hi Gina,

    Thanks for sharing your story. God that is an interesting story. No no gophers to my knowledge here. It would make sense alright but I feel like the flutters are mostly in my legs, arms, wrists, neck, hips, ironically enough they are not really around my heart area which is strange. They are pulsating like as Sue said an electric wave or something. I probably sound so crazy now.

    Sorry to hear you are not well, I hope you feel better soon. I am a great believer in hot lemon and honey. I am going to doc again Thursday, will let you know how I fair out.

    Have a good day and TC,

    C X

  • I think I know exactly what you mean.

    I get a sudden wierd feeling almost like an electrical impulse. It resonates right around my body. I wonder if it is a nerve end response?

    It makes me feel slightly panicky and I have to mentally dismiss it.

    Hope this helps

    Sue

  • Hi Sue,

    Yes thank god people understand. I was beginning to feel a bit like I was imagining it when medical people are not understanding what I am saying. Yeah an electrical impulse would be a way I would describe it.

    I did look it up online and one explanation for this is tiredness. I am exhausted at the minute but when I was in hospital 3 years ago with severe anemia they said it was a blood flow problem but the consultant now says no so I am all confused.

    I am so glad that I asked the question on here as I feel people like yourself understand what I am saying. Thanks for sharing, will keep in contact,

    TC CX

  • that's it!!! I'm not crazy. what is it?!?

  • Hi

    Your Gp should be able to check this out for you.In the area where I live he can order a 24hr ecg which is a little box attached to ecg leads which you wear for 24hrs.

    Or an ordinary ECG

    I don't think it has to be a Consultant, especially the one you were seen by, You explained it well He/She should have known what you where talking about. Even if it has stopped now it still might be worth a visit to your Gp

    Karen xx

  • Hi daisyd,

    I had the ECG and the 24 hr blood pressure monitor and it was clear. You know I have been telling my GP and Consultant for months in the hope that one of them will take notice. The problem is that it is not in my heart so much, mainly in my legs, neck, hands. It is a weird feeling and scary at times. I think I need to make them listen somehow. Thanks for responding and have a good day.

    C

  • Yes I get those flutters often, unfortunately when I had the 24 hour monitor on it decided to behave so yet again they don't believe me.

    The slightly panicky feeling is a good description too.

  • God Tassie, you know I thought I was going mad imagining it, yeah panicky feeling is what I feel alright. Yeah the same with me they weren't there when I had mine on either....

  • hi there! yes i've had that in the past!! Its a horrible feeling and, like you, described it to my GP as a fluttering sensation of my blood. It wasn't just around my heart. Its so difficult to explain some symptoms isn't it.

    Take care

    Jane

  • I have had moments of something that may be like this...but not to sure. I have PVC's alot and I know that feeling...and it is not the same. To me it is like a few little hesitations in the flow of blood in a particular spot. Similar to the nervey eye twitch that I get sometimes.

    I think that anything is fair game when it comes to our circulation and vacular process.

    Take care

  • Hi there, Yeah I think yr right it is like little hesitations in the flow of blood but you begin to doubt yrself when all the medics are saying that it can't be possible to have these. Thanks for sharing, TC CX

  • Could you all be describing mitral valve prolapse? When I was going through menopause my gopher turns began to feel as though my gopher had become a world class gymnast and was doing somersaults which radiated from my throat to my belly button. My GP suggested this was mitral valve prolapse and offered that if it got better, instead of worse, maybe I could ignore it. It did get better. My gopher only comes out now when I have a fever or am extremely tired and he has stopped taking those gymnastics classes.

  • When I said it to my doc she thought it was the heart too but for me it is not the heart at all, mostly everywhere else except there which is really strange. I think I may of misunderstood you sorry Gina in yr last message, I understood a golfer to be a sort of animal but now maybe I am wrong, is it yr throat?

  • I also get twitches and flutters all over the body so maybe that is what you mean? I find it happens more when my INR drops

  • Yeah sounds about right something like that, it is so hard to describe it, scary stuff, thank god for this site.

  • A gopher is like a Central North American wild hamster. Medium sized, dirt digging rodent. But twitches and flutters all over the body -- no, can't say as I've had that. But if I ever should, I'll know for sure its non-specific APS related.

  • Hi Gina, Thanks for clearing that up I seem to get easily confused these days, lol...Yeah it is good to know that it is indirectly linked and that I am not loosing my mind. TCX

  • I don't think it is anything to do with BP or heart. I wonder if it is more a central nervous response to the sticky blood.

    I am missing something here are we talking about 'gofers or golfers'.

    My understanding of gofers is the one above ie hampster like creature e.g. 'Gordon the Gofer'!

    The second 'Golfer' Extremely boring person who spends the day whacking balls across what could be an otherwise pleasant landscape for a walk! Or even better turned into an eventing course for horse riders now you'r talking!

    xx

  • Hi Sue,

    Yeah I would be inclined to agree with you, I think it has to do with the central nervous system. I think Gina is chatting about Gordon the Gofer! TC x

  • No, a gopher is a small hamster like critter. A golfer is a large, possibly hamster like critter given their fascination with holes and sand and their propensity to constantly what at things on the ground.

    Ok. Just to make things more confusing, (and possibly amusing.) have you heard the joke (repeated last week many times on NPR) about Boudreaux and Tipadeaux (New Orleans joke subjects?) Well, Boudreaux finally married Clotille and as he and Clotille was walking down the aisle, Clotille looks up and asks, "Boudreaux, what are your golf clubs doing here in this church?" "Well, Boudreaux replied, "This ain't gonna take all day is it?"

  • I see what the problem is -- my terrible spelling. IN my original post I spelled it goFer when it is goPHer. My bad. I learned to read the see/say way, which means I never studied phonics. My spelling is atrocious.

  • Have you checked your thyroid. I feel as though my blood is boiling even when im resting esp at night. My last blood test showed i may have issues with t3 or t4. But i was borderline so was not treated. But have been having these feelings of late. Going to have another blood test.

  • Cath, I just started having these blood flow 'flutterings'. In various spots on my extremities: wrist, front and back of upper leg (while sitting), other places while sleeping, etc. but not in heart. Did you ever find out what it was? bjt

  • I also get these symptoms...

    It feels like blood rushing through my arms. Kind of like a surge...

    I am not diagnosed n with Hughes. I have no diagnosis for my issues.

    Here are my symptoms and they are all relapsing like flares:

    HeadacheS, Irregular heartbeat, cold hands and feet, blanching of skin on hands and feet when pressed, pain throughout body, shaky muscles, twitching all over, pain in eyes, fatigue/inability to get good sleep at night, night sweats, rapidly changing blood pressure and pulse rate, IBS type symptoms, etc....

  • You thought you had Behcets some months ago. Did you find a Doctor to talk to about that illness?

    Have you tested for Cardiolipin antibodies, Beta2Glycoprotein1 and Lupus Anticoagulant? I know you have done a lot of different blood-tests. These 3 are are for Antiphospholipidsyndrome (Hughes Syndrome or Sticky Blood ).

    You have fatigque and Vertigo and pain behind yoru eyes and headache. Symptoms perhaps of APS. Could also relate to Sjögrens syndrome. Get a Rheumatologist who knows these 2 illnesses is my advise without knowing more. Some people also test negative to the antibodies but still have the illness. Difficult thing. Try with Baby-Aspirin perhaps and see if you get a little better if you get nowhere.

    Best wishes from Kerstin in Stockholm

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