Home Forums Main Forum Patient Stories DAA Side Effects on tx “pulsating, heart beat, speedy feeling”

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  • #5419
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    hi, hope everyone feels well today,

    It has not been easy for me over the weekend.
    I noticed in many different threads the mention of “speedy feeling”, “pulsating”, “pumping”, “heart racing”, so opened this new thread if anyone who are on tx or have finished treatment could share similar experiences of this. As sometimes we use the same words but the meaning could be very different.
    I don’t really have the “speedy” feeling some describe, I don’t have more energy, but I do have very strong pulsations & can hear my heartbeat in my head very strong, esp at night when I try to sleep on my sides. My head hurts & I suspect my blood pressure could be high.
    Does anyone measures their Blood Pressure while on tx?
    Yesterday I decided to buy a heart monitor but i think it is faulty, the sleeve might be too small for my arm, as the readings were like 190/95, which takes me into the crises stage before heart attack.
    I don’t think this is the case but will be trying to get to my surgery today & have my blood pressure measured professionally & will be contacting my Doc.
    I never had heart problems, nor high blood pressure, nor any other health problem apart form HCV, so this is def reactions to the meds.
    The worse is at night as the loud pounding in my head prevents me from sleeping.
    Generally feeling very tired, drugged & headachy it’s been my 1 weeks now, I did had 1 good day when I felt really well but after that reverted to feeling unwell.
    Can others who had similar sensations try to describe what’s their experience ? did it pass ? do you check your blood pressure? what you doc said if reported?
    thanks,
    jolie xxxx


    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    #5422
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    Hi Jolie,

    Assume you have seen mine and Enkels posts in Dan’s thread today. His sound more like yours.

    http://fixhepc.com/forum/patient-stories/388-dan-s-twinvir-story.html?start=30

    I wouldn’t worry too much about your blood pressure yet as easy to do wrong if you don’t have experience and worrying will just make it worse. As the hitchhiker’s guide says: DON’T PANIC ;)
    But I would go see your Dr today to a) get BP checked professionally b) get him to show you how to use monitor correctly.

    However, mine was up 10 days ago when I visited GP and it normally sits very steady these days as long as I take my tablets. We just put it down to my excitement over Tx and the fact that I was rapid fire telling him all about it which may well be the same sort of thing with you. But I’m back there in 9 hrs to get LFT results so will check again and report back.


    G3a since ’78 – Dx ’12 – F4 (2xHCC)
    24wk Tx – PEG/Riba/Dac 2013 relapsed
    24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
    16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
    SVR7 – 22/06/17 UND
    SRV12 – 27/07/17 UND
    SVR24 – 26/10/17 UND
    :cheer: :cheer: :cheer:

    #5425
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    If you can’t get to Dr then I would think any chemist/pharmacy would be able to do a quick check and stop you from worrying. :)


    G3a since ’78 – Dx ’12 – F4 (2xHCC)
    24wk Tx – PEG/Riba/Dac 2013 relapsed
    24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
    16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
    SVR7 – 22/06/17 UND
    SRV12 – 27/07/17 UND
    SVR24 – 26/10/17 UND
    :cheer: :cheer: :cheer:

    #5427
    Avatar photoberrinice
    • Guardian Angel
    • ★★★★★
    @berrinice

    I am or was genotype 3 sof + dac + riba. No problems with heart rate. but my bp before I started was on the healthy low side maybe 107/56.
    Try deep breathing, silent sitting, meditation type stuff

    #5428
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    Hello Jolie,

    You blood pressure is not panic stations high. Measure it a few times – 10 minutes apart – and you will probably find it falls after an hour or so and you get bored with the BP measuring and start to relax.

    Contacting your doctor is a good idea. The first few days can be a little rocky.


    YMMV

    #5432
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    hi & thanks all for replying,
    Just a quick note to say that it is def the blood monitor machine that has too small cuff size for my arm ( max 30cm), something I noticed after I brought it home & did further reading on the subject.
    Too small arm cuff will give you too high reading & too large cuff low reading, so the sleeve needs to be just right for the width of the arm. I was not aware of this & was not advised properly when buying it at the pharmacy.
    I assumed all cuffs that come with BP machines are of universal size.
    Am not panicking, am off to pharmacy now to have my BP taken & then return the digital machine back to shop.
    My BP was always normal mid reading & 3 months ago the latest.
    Will get a better BP machine/bigger cuff & try again.


    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    #5433
    Avatar photoDan
    • Guardian Angel
    • ★★★★★
    @dan

    Hi. I haven’t monitored my blood pressure yet, but have the bp monitor at how, as my wife has high bp.

    I’ve noticed that my tinnitus gone a bit worse, since started tx, shortness of breath and have a strange taste in my mouth.

    I experienced the first 2 sensations before tx as well, on and off.

    The chest pain is there as well from time to time. As I experienced most of it in the past and my GP didn’t pay attention to it, I just try to ignore these symptoms for now. If it gets worse, there is always A&E to check ECG and liver function. I booked my GP the next appointment is on the 21st of December.


    Gen 1b, F1-F2. Naive.
    Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
    Starting VL 400000, Alt 49/AST 44
    1 week VL 29, ALT 44/AST 30.
    4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
    7 weeks VL Detected, ALT 28, all other normal
    8 weeks UND, 12 week UND, 24 week SVR UND

    #5440
    Avatar photoTina-Hill-facebook
    • Guardian Angel
    • ★★★★★
    @tina-hill-facebook

    Hi Jolie, thank you for posting this
    It was reassuring for me to read this as like yourself I had a very rocky weekend. I am on day 7 of Sof/led and on days 3 and 4 I had NO sleep whatsoever. My body was amping to go but my head was the oppisite. Im pleased to say that this has now passed and im getting more rest and im feeling that my body is adjusting to the meds- a helpful hint a friend metioned was to stay of the computer as it can get you wired…he was right!
    All the best with your treatment
    Tina x0x0


    SVR 24

    #5453
    Avatar photopat1
    • Guardian Angel
    • ★★★★★
    @pat1

    ‘I don’t really have the “speedy” feeling some describe, I don’t have more energy, but I do have very strong pulsations & can hear my heartbeat in my head very strong, esp at night when I try to sleep on my sides. My head hurts & I suspect my blood pressure could be high.
    Does anyone measures their Blood Pressure while on tx?’

    Hi Jolie
    You very accurately described a sensation that I have experienced periodically over the years and for me it was always at night. For me this feeling generally occurred when attempting sleep and it was sometimes after a couple of drinks. It felt as though the virus was replicating and like you I could feel a strong sensation of ‘heartbeat in my head’ especially when lying on my side and it was just impossible to relax or sleep until the sensation passed which usually took several hours. I take meds for high blood pressure and my blood pressure is recorded as at the high end of ‘normal’. I was also on cholesterol meds which I have halted in anticipation of my sof/dac tx.


    gt 1a VL 6m
    F2/3 FibroScan – 9KPa in 2011 and 7KPa in 2015
    sof/dac 10 December for 12 weeks
    pre tx alt 85 ast 51
    4 wk alt 34 ast 31 UND <35
    8 wk alt 29 ast 32 UND <15
    12wk alt 25 ast 25 EOT 3.3.16
    SVR24 UND KPa5.3 F0 in normal range
    I am well
    .forever grateful to fixhepc

    #5455
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Thanks everyone,
    To answer prior question , yes I was aware of Dan’s thread talking about this & also I remember few others over the past few weeks but could not find it now, so thought maybe this topic needs it’s own thread – so is easier to find.
    Then again, maybe this pulsating, throbbing sensation is not as common as I thought.
    It also appears some folk here had similar symptoms & sensations before tx, interesting, as I only noticed this since taking the meds, almost from day 1 but intensifying as the tx progress.

    Anyway, what happened after I left earlier to find somewhere in a small UK town to have my BP taken at the few pharmacies we have here, hmm…no luck !, such service was not available. I managed to buy bigger cuff size for the BP machine as advised by yet another pharmacists only to find when brought home that the machine is not powerful enough to inflate the bigger cuff, it only works with the small size cuff – which gives off the wrong reading.
    When I pointed out about the cuff sizes she was not aware of it & surprised, just as myself assumed that the cuff size was universal on all BP machines, so we’re all a bit wiser now.

    O well… the saga continues…we’ll see what I can do tomorrow to have my BP taken, I don’t feel panicky on in danger, just want to know what’s going on so I can do something about it, if I can.
    Since I had that brisk walk this evening in town I feel much better for it.


    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    #5463
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    ,Hi Jolie, sorry to hear about the BP machine ‘adventure’ and thanks for posting.

    As you know I’m not on tx yet but have concerns re getting BP monitored once I am.

    I get a pulsing thing going on pre-tx, mid centre rib-cage. It’s like another heartbeat.
    This is worse when I go to bed the minute I lie down and is accompanied by a ‘weak’ sensation generally as if I may faint, hard to describe. I have told two Drs and they just ignore it.
    I hate it. I also get it when stretching or bending over and on climbing stairs.
    It doesn’t hurt, isn’t really alarming, but would like to know what it is!

    First consultant noted my BP was on the edge of cautious/high marker, previously it was always low.

    Our Drs surgery has a BP machine in reception. Not sure if you can just walk in and use it, or if you have to be there for a reason! Keep intending to find out, will try maybe this week. It may be worth finding out if there’s a surgery near you with this option?
    Hope you feel a bit brighter in the coming days and you can put your mind at rest. It must be annoying when trying to sleep.


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

    #5467
    Avatar photoPrice
    • Guardian Angel
    • ★★★★★
    @price

    Dan, chest pain is never a normal thing. You need to notify your doctor.

    P

    #5469
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    Hi Jolie,

    Just returned from my GP who checked my BP while there and It is back into my normal range.
    I do know that when my blood pressure is raised due to stress I feel very little difference and can’t really pick it by how my body feels. It is most noticeable to me when driving so I diagnose by how loudly I’m shouting at other “idiot” drivers and how deep are the finger impressions I leave in the steering wheel. A 260 horsepower Blood Pressure Monitor with mag wheels! :lol:

    I do wonder how much of this is us anticipating and therefore looking for sides, so when we find something that is new or unnoticed previously, our minds focus on that and magnify it out of proportion to its true meaning. Particularly late at night in bed when our imagination is free to roam far and wide and with us being so quiet and still, everything that our body does is more noticeable.* This isn’t to devalue your’s and others (and indeed my own) experiences as they are important to us and by sharing them we can get a better idea of how universal they are and build a database of expected sides vs those that may require urgent medical attention.

    G

    * remind me to tell you how I spent a night in hospital in Feb this year having a “heart attack”. 15hrs with ECGs, treadmill stress tests, the works! Got a clean bill of health, nothing wrong. (My excuse now is that I’d been outside in the heat (40°C) all day and was tired and dehydrated) <img style=illy:' />


    G3a since ’78 – Dx ’12 – F4 (2xHCC)
    24wk Tx – PEG/Riba/Dac 2013 relapsed
    24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
    16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
    SVR7 – 22/06/17 UND
    SRV12 – 27/07/17 UND
    SVR24 – 26/10/17 UND
    :cheer: :cheer: :cheer:

    #5472
    Avatar photoPrice
    • Guardian Angel
    • ★★★★★
    @price

    Jolie, try putting the blood pressure cuff on the lower arm where it fits better. We do that in Intensive Care when we can’t use the upper arm.

    Also, if your blood pressure is high you don’t want to make it go up by exercising. Take it easy, relax.

    #5476
    Avatar photoCJ
    • Guardian Angel
    • ★★★★★
    @cj

    I get a pulsing thing going on pre-tx, mid centre rib-cage. It’s like another heartbeat.
    This is worse when I go to bed the minute I lie down and U.S. accompanied by a ‘weak’ sensation generally as if I may faint, hard to describe. I have told two Drs and they just ignore it.

    That’s strange London Girl, I’ve also experienced that or something similar that no doc can explain, , it is hard to explain anyway.
    I feel like the heart starts kind of racing & I feel weak & need to cough or something….? it sort of “thumps” all over chest.
    Once I tried to explain this to a doc & they sat me down & made me inhale ventilin, but this did nothing.

    I always have quite low blood pressure & exercise regularly, so don’t know what it can be??
    weird.


    J the young dragon slayer is:
    HepC 1a since birth
    Male aged 15
    VL 2000000
    Started Twinvir/ 10-11-15-then Sof/led.
    NO sides so far !
    after one week VL : 37
    after 4 wks VL : UND !
    EOT 2/2/16 UND.!
    4 wks. post tx results….pending….
    7/3/16 VL result : 4 week post tx: SVR !
    12 weeks SVR !
    24 wks SVR yeeaa!!

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