Griffin

It's not the drug making my breathing worse. It's the old heart symptoms returning. ie. breathing is related to heart rate. The drug reduced heart rate and therefore improved breathing but no longer seems so effective. My question was whether anyone else had experienced the positive benefits of Ivabradine wearing off over time.

Has anyone else had this experience? I was put on Ivabradine to reduce my heart rate - sinus rythmn - and it worked, my pulse back in the 70's in home monitoring. But over time my heart rate seems to be creeping back up and my breathlessness worse again. Be interested to here from others on their experiences with this drug.

My family were like this until I had my racing heart properly diagnosed. Tachycardia is something that needs taking seriously.

I have these problems too, with Delayed Sleep Phase Disorder. Nothing really shifts my sleep pattern which is why I am still awake now having been awake all night. Melatonin and sleeping drugs just make no difference however and whenever I take them. Sometimes a combination will work but have to be careful with that. Mostly I think it is a case of just accepting it; I've tried everything over a number of years with no long term success. What sleep I do have is not refreshing either, although sometimes if I have around 18 hours I get a good patch following for a few hours. As a way of life, it is not much fun !

I am still looking into what might be underlying my IST and CFS and have always suspected having had glandular fever (EBV) was somehow relevant. Some research from 2007 fits with my profile, apart from my hypotension. I was interested to find research that is specific to tachycardia which is my worst symptom. Anyway, I am posting this in case it is of interest to anyone else. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Lerner AM, Deeter RG, O?Neill W, Dworkin HJ, Zervos M, Beqaj, SH, Chang CH, and Fitzgerald JT. ?Cardiac and virologic issues? pp 304-330 from Handbook of Chronic Fatigue Syndrome. Jason LA, Fennell PA, and Raylor RR. John Wiley & Sons, Inc. We describe studies spanning over a decade which support the paradigm that CFS is a prolonged infectious mononucleosis due to Epstein-Barr virus, cytomegalovirus or the two viruses in co-infection. This paradigm suggests that CFS patients?own immune defenses prevent complete virus formation, and that only parts of the virus?genetic material are expressed. Cardiac involvement leads to rapid heart pumping at rest (tachycardia) and eventually cardiac muscle pump weakening. Specific antiviral treatment has led to remarkable sustained improvement in CFS patients so that criteria for the diagnosis of CFS are no longer present. Medical testing by Holter monitoring, MUGA, nuclear stress testing, cardiac biopsy, virus serologic tests and disappearance of symptoms of CFS support this paradigm. -------------------------------------------------------------------------------- http://iv.iiarjournals.org/content/21/5.toc Abstract 1 Experimental Studies: A. MARTIN LERNER, SAFEDIN H. BEQAJ, ROBERT G. DEETER, and JAMES T. FITZGERALD Valacyclovir Treatment in Epstein-Barr Virus Subset Chronic Fatigue Syndrome: Thirty-six Months Follow-upIn Vivo September 2007 21:707-713 Abstract Full Text (PDF) Abstract 1 of 1Experimental Studies Valacyclovir Treatment in Epstein-Barr Virus Subset Chronic Fatigue Syndrome: Thirty-six Months Follow-up* Background: We hypothesized that subset classification of Epstein-Barr virus (EBV) in chronic fatigue syndrome (CFS) is required. At first, a blinded-random placebo-controlled trial of valacyclovir in EBV CFS subset was performed (Group 1), and this EBV subset was followed for thirty-six months (Group 2). Patients were given valacyclovir at 14.3 mg/kg every 6 hours. The validated Energy Index (EI) point score assessing physical functional capacity, Holter monitor, multigated (radionuclide) MUGA rest/stress ventriculographic examination, EBV serum IgM viral capsid antibodies (VCA), and EBV early antigen diffuse (EA) were followed. After six-months, Group 1 CFS patients receiving valacyclovir experienced an increased mean least square EI point score +1.12 units (122 kcal/day), while the placebo cohort increased +0.42 EI units (65 kcal/day). EI point scores at Group 2 increased progressively. Sinus tachycardias decreased and abnormal cardiac wall motion improved. Serum antibody titers to EBV VCA IgM decreased. Patients resumed normal activities.

Got my prescription today. He has put me on bisoprolol (Congescor). I start it tomorrow. Minimum dose. Hope it suits me. Hope it does not lower the BP too much. Feeling a little anxious because the Ivabradine (which I will stay on) has raised my BP to normal and now I am fearing it will go down again. I guess it all has to be trial and error but I was so hoping the Ivabradine would work on its own and disappointed it needs a top up of BB.

I've just had this experience on Ivabradine. Was over the moon. Unfortunately my tachycardia came back after a week or so and now doc. has said I need further treatment. Came down to earth with a bump. Hope you do better than me !

Hi My doctor has never heard of midodrine and it isn't in his little book. I think it may be off label in the Uk.

Thanks all. Should add, I have low blood pressure so doctor is trying to avoid beta blockers.... but may end up having to have them. Also, the thinking that it may be caused by a virus is not specifically that I am suffering from a virus now, but that one in the past caused all this. Personally I am pretty sure this all started with Glandular Fever in the early nineties. My tachycardia is permanent, it doesn't come and go. It varies in how bad it is randomly throughout the day, but with the POTS definition of rising >30 on standing from lying.

This is a really interesting topic. I have never thought doctors have all the answers. A diagnosis of CFS.ME is a cop out in my book. No treatment just a "you will get better" - hardly scientific. My heart rate has been found to be high many times over the years, including a hospital admission for it. Yet I had to badger the doctors for any of them to take it seriously and in the end it took two referrals as the first heart specialist dismissed it and I demanded a second opinion. What was finally diagnosed as quite severe inappropriate tachycardia would never have been treated if it had been left to the doctors. I feel very angry about it. After all, it is quite specific and hardly difficult to diagnose.

My tachycardia has been really bad and I've just been put on Ivabradine to bring my racing heart rate down. Was 156, treatment brought it down to 75. Doctor and me very pleased. My body felt like I'd got it back after renting out to a mountain climber; very considerable change to how my body felt - good change I hasten to add. v.v.good in fact. Over the last three weeks, despite taking the meds, my heart rate has gone back up. Not as bad, about half as bad. Max at around 110. Body feeling bad again, though only half as bad. Miffed and disappointed. Since the actual cause of my tachycardia is not known ( but there must be some underlying cause*), I have a horrid feeling the underlying cause may be fighting against the new mediaction to re-assert itself. ie. treating the symptom may be useless. Is this familair to anyone? *the consultant said it was hypotension causing tachycardia, but he has changed his mind and has said it might be a virus

I recommend getting in touch with local council disability services and with local "help the aged"/disabled groups etc. They will know companies which supply good car services to people in your area. I found a solution through a Disability Aid group who knew a wheelchair motobility car and van service so would be familiar with my needs. I got a lovely comfortable saloon and a driver who was endlessly helpful and understood my problems. It was expensive of course but not nearly as expensive as the same sort of service provided by Saga. I found it was easy to explain my needs as similar to driving a 90 year old around - many of the same dilemmas crop up. I also had hotel, few days recovery from journey, a day doing what I had come to do, few more days recovering from what I had to do. Then, at home weeks getting over it all !! So yes, with hotel and travel costs it all adds up to quite a lot of money. Good luck.

Thanks Summer. Useful to know.

That's outrageous. Thanks everyone. It's any beta blocker. If they generally lower blood pressure then they are defintiely not for me as I already have hypotension, so if the consultant tries to give them to me he must be mad like Tearose's.

Does anyone know the contra-indications for beta blockers? My cardiologist told me not to let any doctor give them to me for my tachycardia/hypotension. Then he wrote in a letter to my GP that he might try beta blockers. I can't get any sense out of him over why he said to avoid them or why he then changed his mind. (He keeps changing his mind on all sorts of things which is endlessly confusing).

I have opened another topic on this which is simpler and more straightforward and better topic title. It is at http://dinet.ipbhost.com/index.php?showtopic=15048 MODERATORS : can remove this topic ################################################################################ # I have hypotension and tachycardia. Recently my cardiologist put me on Ivabradine for the Tachycardia. It took a dose of 7.5mg twice daily to bring my heart rate down to normal. This was a month ago. Now my heart rate is rising again; I've been measuring it three times a day and it is regularly over 100 - maxing at 128 - so not as bad as before which was maxing at 156. But I am really puzzled - why did the Ivabradine work and now seems as if it is only half working? I am wondering if there is some underlying cause for the tachycardia which is fighting against the Ivabradine. I am bitterly disappointed as I was feeling back to normal when the heart rate was back to normal and now I am feeling rubbish again. My BP seems to be more normal, not so low, which is also a bit of a mystery. Am seeing my cardiologist at the weekend but I'm not sure he has a handle on all this. Anyone else had this experience with Ivabradine?

I get the same symptoms. It seems to be associated with extent of exhaustion in my case. If I do too much, I get it. The only thing I found that relieves it is an OTC cystitis med. called Cymalon - others don't work. Tests show no infection and I had cystoscopy which showed nothing too. It's very annoying and at it's worst drives me nuts. The one good point is it gives me a sign that I am doing too much so I know I need to rest more. Echo what others say, seems like Intersticial Cystitis - but I think it's not really that but just that''s the closest condition to it.

I am also in the UK and I too get slow sodium prescribed by my GP after cardiolgist initially prescribed them. Have been told I need to stay on them.

Rachel - no I don't have a doctor who could explain my limitations. I am in the usual position of nobody really being interested in my CFS. It is endlessly frustrating. Tillly, I am in West London and cannot travel any distance. So limited. This is the heart doctor who diagnosed my IST a year ago. It took five years to find him so not confident about finding another suitable specialist. I think he is very nervous about prescribing Ivabradine so perhaps it is that which makes him say it has to be in hospital. He was going to prescribe fludrocortisone but changed his mind. I don't know why. He has been hopeless so far. The single benefit is that at least I do have a diagnosis after six years of getting no one to listen to me. I am very bad this w/e with the CFS, more exhausted than ever, and dreading this hospital lark.

I don't know why it has to be done in hospital. It seems to be the fact that they want to monitor the dosage to get it right. But I don't really know. The heart surgeon has been really strange all the way through and it has taken two years to get this far. He seems quite incompetent or his secretary is. I am really fed up with him but don't know who else to go to.

I am going into hospital to be started on Ivabradine for my tachycardia which will be monitored and have been told I will have to do exercises. I am fretting about this as I have Chronic Fatigue Syndrome and can't exercise, and will be exhausted just from the journey to get there, also I get really ill if I overdo things. I am mostly bed bound. I have found in hospital before that they have no understanding of this and dismiss my concerns and I have really suffered in hospital before due to this and I am actually quite scared of the damage it will all do to me.

I have delayed sleep phase disorder and perodic limb movement in sleep (plms) which means I am constantly surfacing from sleep hence non- restorative sleep. I have always had delayed sleep, but now it is so bad I have complete day/night reversal.

I have POTS and Sjogren's, but I was told that chemotherapy had caused the Sjogren's. No one here is in the least bit interested in the Sjogren's and no one has ever suggeste any treatment for it, any more than any of my doctors have ever heard of POTS. I can't help but notice the difference between the UK and the States. Feels like we are in the dark ages.

I am still waiting for a date to start on Ivabradine for my tachycardia (& poss fludrocortisone for my BP). Am getting very fed up with waiting. Was originally advised I was going to be started on it in November and here we are late Feb and still no date from consultant to begin..... Meanwhile all sorts of questions pop into my mind. The latest is that since the heart is racing for a reason, if medication stops it racing this is simpy stopping the symptom and doesn't that mean that whatever is wrong with me will manifest in some other way? I suppose I am questioning whether it is ok to treat the symptom rather than the cause; might treating the symptom acttually make things worse? Sorry, probably not explaining very well......

My heart specialist (who I don't think has heard of POTS) says my adrenal test came back normal. I've noticed that many people with POTS have adrenal problems and am wondering if there are any special adrenal tests whch show up problems where the standard test might not?