TOPIC:

It is hard to explain CJ! Like a 'whooshing' feeling in chest area, can't keep eyes open, like going to sleep when you don't want to go to sleep, very odd!

Price wrote: 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.

Thanks Price for this suggestion, I did that & the BP was still high but not so much, 158/88 & then when repeated with the larger cuff but on the lower arm it came to 140/83. So size does matter after all.
Am not sure if any of this is accurate & not much luck to get to surgery before it closes at 5PM here & I finish work at the same time.
Anyway, I did some reading as to what's the most reliable BP machine I can get in the UK & have ordered one online.

Exercise moi ??? no way, me & exercises don't agree, although I do a bit of walking, hiking & swimming, that's about it. I wish I could do more but for the last few years after finishing work I'm so wiped out I don't have the strength to do anything but relax on the sofa, never mind exercising.
Price are you a doc or a nurse ?

LG, yes there is a free BP huge machine at my surgery with a hole in the middle where you insert your arm & then the machine squeezes it & at the end prints out a piece of paper with your BP, I have no idea how accurate or hygienic it is. The problem in a small town is that doctor's surgeries are opened only during normal office hours & are closed at 5 PM & at the weekend, so if people work like me they don't have a chance to see their doc unless they take half a day off work which is not always possible.
Good system for the NHS to save money, they must have concluded that if someone works then hey must be well enough & don't need to see a doctor….. Gaj, thanks for your interesting thoughts,
Personally I try not to give too much attention to any thoughts that leads to extra stress or too much excitement, anticipation, as that brings the BP up amongst other things.
Calmly focusing on the task at hand is about all I can manage at present & even that is hard with low energy.

Tina, glad to hear you're sleeping better now, sleep is so important in trying to heal our bodies on & off tx.
I don't have a problem so far with sleeping while on tx, I sleep 10 -11 hours every night, but it does take a while at times to fall asleep.
I do take the meds at night, at 8PM, so maybe this plays a role in sleep pattern ? don't have a clue.
Before tx I did have a insomnia & sleeping was difficult even when exhausted.

Gosh, that's an early closing time for a GP Jolie - Ridiculous!

Out of curiosity last night I did some digging on the subject of "hearing heartbeat in your head" & find out it actually has a medical name! pulsatile tinnitus "pulsatile tinnitus is a rhythmical noise that usually has the same rate as the heart" - so this is what's going on in my head with pulsations radiating throughout the body < night, more info link : www.tinnitus.org.uk/pulsatiletinnitus
I always thought tinnitus is some kind of whistling noise in your ears, I had not idea of another type of pulsating tinnitus.

The good news is it has nothing to do with BP, the meds, the tx or HCV, it's something most likely unrelated.
Bad news, needs investigating further probably soon.

I just joined this forum after being told there was an Australian guy who was suffering sides similar to mine but I have not found his post yet. I ran straight into yours, so thought I would reply. I'm on some other forums but yet to post my story here.

Firstly I want to say that your sides almost mirror my own - palpitations/pounding, etc, especially at night. Im fatigued, feel unwell off and on, drugged out, anxious, insomnia, mostly due to the heart pounding I think. I'm into week 15 of 24 Sof/Dac and it hasn't been easy from the start. A few days after beginning tx the pounding started, anxiety, panic attacks mostly due to not knowing what was happening and thinking I was going to have a heart attack. Anxiety and panic attacks are not as frequent but still happen. I also have episodes of extra heart beats or brief uneven rhythm which adds to the anxiety.

I am physically fit, I'm a surfer, not on any other meds and overall have been very well living with a very high VL of hep c for over 30 years. Long story short, I have been to see a Cardio to investigate these new heart issues. Ive had ecg's, eco cardiogram stress test, 24 hr holter monitor, even a CT scan. All were fine, although unfortunately I did not experience an event during the stress test, ecg's or holter monitor, as I have outside of the tests. Most irregular beats or rhythm issues have occurred while surfing when my heart rate is up but not always. My cardio can't see any thing wrong, all bloods are perfect. The only thing he thinks might be effecting the extra beat issues (feels like skipped beats) is my blood pressure is just on the low side of normal, usually around 110/70 and could contribute to experiencing episodes when laying down on my board from standing or paddling or getting into bed or in a bath, as these are common times it happens, but its not always at these times that they happen either. Its all very hard to isolate and I think it has to be drug related, along with the palpitations. At this stage Im continuing my tx on my Cardio's advise but I'm am considering stopping at 16 weeks. Not that I want to but you are the only one that really knows how you feel and things aren't really improving and dont feel right.

My advise is go and have some tests. I doubt its your blood pressure, just the sides of Sof/Dac tx I'd say. I noticed you're on Rib now too? Why did you start later on the Rib? There have been reports coming out about isolated serious events on the Sof/Dac combo, mostly with people on other meds or heart meds. Questions are being asked about the heart toxicity of these drugs, especially Sof. Unfortunately, It may be a while before we get some real world data on these new wonder drugs.

Wishing you all the best.

Bill

Welcome Billy,

I'm not a doc so take my comments with a grain of salt, but my understanding is that the heart issues have mostly related to Sofosbuvir where patients with cardiac issues were already using amiodarone. The symptoms are a very slowed heart rate and the incidence seems to occur within about a week of commencing treatment so it doesn't appear to be related to our own experiences. As you will have read from my post I experienced what I thought were cardiac issues and ended up in hospital with the same results as you in that they didn't find anything. However that occurred in Feb and so well before I commenced treatment.
From what I've seen it does seem that these DAAs have more side effects in those of us with greater liver damage (noting you are F3/4) and we need to keep in mind that while hep c primarily impacts the liver, in those of us who have had it for a long time it does effect the rest of our body in various ways too. And although the meds knock out the virus quickly and that is seen in liver function recovery, it is going to take a while to heal other damage and some things may never fully repair. But at least with the virus gone and our livers working much better we can finally start that process.
And hey, I know a lot of people in their mid fifties without hep who couldn't hope to paddle a board let alone stand and then lie down on it! :~}

But very wise advice for everyone to check any sides that really worry them with the experts and test for anything you are concerned about.
While these sides can be hard to handle they are nowhere near the old Peg/Riba for me but of course everybody seems to differ. But in my case my GP is happy so far, my basic bloods are good and I'm due at the clinic for a check on Thursday. Unfortunately my 4 week viral load results probably won't be available till after Xmas (but hopefully before NY) but given the great results everyone else is getting around here I'm not too fussed and figure that worst case I will be undetected at 8 weeks anyway! I'll definitely be trying for the full 24 weeks to really beat this and as my specialist said, worst case I can drop the riba and keep the sof/dac going.

If the riba question was to me, then the shipment was delayed and as the specialist said to try and take it for as long as possible but try for minimum 12 weeks, I decided to start the Sof/Dac asap and add the ribavarin when it arrived rather than wait. Impatient ol' bastard that I am.

Thanks for your reply GAJ, maybe it was you concerning the late Rib add. Insomnia and fatigue have me clutching at straws right now trying to decipher posts and replies.

I have come across another person having similar sides to mine and have been told about others from a nurse and she told me there was an Australian guy who recently posted here but I cant find it.

I did read the stuff on the amiodarone patients. It's hard to tell at this stage what cardio effects, if any, are occurring out there. I didnt have issues like this before starting and they have been with me for the whole 15 weeks. Whether its the drugs or my body changing due to the virus dying, or some other freaky coincidence, I dont really know, but I'd like to. In a way I hope it is the meds, because then when I finish they will hopefully go away. Don't think I would have survived Interferon that's for sure!

Cheers

Billy

Hi Billy,

I'm sure that the effects you are feeling with go once you complete treatment. We all seem to be effected a little differently by the meds, some breeze through, others struggle as you will see when you look around here. Join in and ask questions, there's lots of good information and understanding of what we are all going through together. After all we are sort of pioneers. We have a few good laughs too which is important. BTW are you supported/monitored by a clinic? Or going it alone?

Yeah, insomnia definitely won't be helping and will only increase the symptoms you have. Are you taking anything for it?
If not have a talk with your clinic or GP about some mild tablets that won't interact with the sof/dac. It can make a world of difference getting a reasonable nights sleep.
So far this time I have been sleeping okay, well six hours anyway, so haven't needed anything but last treatment attempt I was a wreck until I spoke to the clinic about quitting and they gave me a script. I don't normally like taking those sort of meds so only took a half tablet when I couldn't get to sleep. But I always had a half sitting on the bedside table with water so if I woke during the night and couldn't get back I would just have that. Having half tablets of the mildest version of Temazepam available was just enough to make me drowsy and sleep for at least a few hours usually. But only when I really needed them (probably 3 or 4 nights a week) which was enough to get me through the last 4 months with some sanity left.

G

Like a 'whooshing' feeling in chest area

I meant to add in my post how I also have a strange hollow feeling in my chest most of the time but 'hollow' isn't the best description. In fact I can't really describe it at all. It almost feels like somewhere in my wind pipe in the last half of breathing in. And besides the palpitation and extra beat issues mentioned in my post reply, I also get occasional slight tremors, like vibration in there as well which aren't painful, just weird. I get chest pain also but Im almost certain this is more minuscule skeletal pain as when I twist and arch it hurts in my ribs and sternum area. I think it's from laying on my surf board but I never started getting it until I started the meds. I must be going mad!

Hi All,

I have that pumping sensation as if my body is imitating the heartbeat. Sometimes the pulsating migrates in ears too. I have concluded that it is a mis-coordination of vagus nerve which connect all the organs. Due to the damage of HCV on vagus nerve in liver and other parts, the signals get mixed. The signal of heartbeat may go to the musculature of intestine, whenever where vagus nerve goes.

Hi Enkel,

I was just looking for a thread that I thought fitted what Billy was describing and surprise! It was yours.

fixhepc.com/forum/questions-and-answers/...ge-symptoms-yes.html

Billy,

You can see from this thread a lot of variance in symptoms/sides both pre and during treatment. Your last post reminded me about '
LondonGirl's post on the first page. I also get the phone effect sometimes.

GAJ,

I can guarantee that they are not due to heart, they are from a very tired nervous system. HCV exhausts the nervous system, being it central and peripheral. The problem is that these meds contribute to the exhausting the nervous system. In the beginning it is hard. But as time passes, the HCV contribution will go to zero.

Thanks G, I will look around here for sure, it's always good to see whats going on with others and there are so many good news stories these days with the new DDAs. Ive spent a lot of time reading over the last year or so, trying to get a handle on whats happening out there, thats how I came across Greg Jefferys just as he was doing his India visit.

I am under a great hepatologist and nurse at a major hospital. I'm taking an Indian generic Sof, the Dac I qualified for through the hospital. It was looking like I would get the Sof through the hospital at one stage as well but good o'l Gilead pulled the plug on their compassionate access program before it even started. At least BMS and Abbvee have come through.

Funny you should say that about the half tabs of Temaz that you kept ready beside you for insomnia as I do exactly the same thing, though I often avoid them for too long trying to get back sleep by myself and then it becomes pointless when dawn is almost there. Plus I try not to do more than 3 nights in a row if I do take them and also skip night between if I can. I only really take them when desperate from being totally worn out. I have gone through stages of getting 5-6 hrs sleep some weeks and thats enough to get by but most of the time I have shockers where Im lucky to get an hr or two at the beginning and then its all over. When the palpitations are bad it's almost impossible to sleep much even with half a temaz. I wont take more though as I leant my lesson a while back while traveling. I took a half or a whole 5mg every day for a month and ended up with withdrawals for a few months after and that wasn't a nice experience. Its actually very similar to what I'm going through some days right now! Haha! Just got to roll with it I guess.

Bill

That is interesting, Enkel. As I mentioned in my last reply to GAJ, the sides I'm getting are very similar to Benzo withdrawals, which is a breakdown in the nervous system. Is there any literature anywhere on this?

Im wondering, if you reach undetectable at 5 weeks why your symptoms would be just as bad at week 15?

Bill