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Cate

Ivabradine dissapointment

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Hello Everyone,

I haven't been officially diagnosed but my cardiologist thinks I have POTS or something called SNRT and has put me on Fludrocortisone. Which has made a great deal of difference and I felt so much better but was still tachycardic. He wanted to start me on Ivabradine as I couldn't tolerate beta blockers, they made my limbs feel heavy and I was so fatigued that I couldn't function. My GP said this could have been because they dropped my blood pressure even further. 

 

I was so excited to try Ivabradine, not least of all because I've read on the internet that it was supposed to be a miracle drug for pots. I was so looking forward to losing the brain fog and the racing thoughts and adrenaline rushes. But after being on the drug for 2.5 days, I had a really bad experience whilst driving. 

 

Initially it seemed promising because the jittery feeling that has been with me for the last 6 years disappated but then after lunch yesterday I suddenly felt really drained and like I couldn't keep my eyes open. I was afraid that I would fall asleep at the wheel so I went for a lay down at my sisters house. I fell asleep but it felt like I was sleeping really deeply, at times I was afraid I was losing consciousness then I would wake with a jolt and my body would be flooded with anxiety. 

When I went to bed last night the same thing kept happening until eventually I drifted off around 3am. 

 

it felt like a similar reaction to how I've responded to beta blockers in the past, only much worse. I felt flooded with adrenaline, like I needed to crawl out of my skin. But at the same time completely and utterly exhausted. 

I'm confused as to why this happened? Do you think midrodrine might be a good alternative? I wanted to try midrodrine but my cardiologist said it would probably make my adrenaline rushes and tachycardia worse. I'm so confused as to what could be going on and so upset that j seem to have fallen backwards after feeling much better on my steroids, as today I feel unwell again :'-( 

any thoughts would be much appreciated,

Thankyou,

Cate 

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All i can tell you is that different beta blockers have different effects on different people, so it might be worth trying another one. I haven't but tried ivradibine, but I have not gotten any change in heart rate or worsened adrenaline rushes with midodrine. Just chills and scalp crawling/tingling which is tolerable at 5mg for me. Nothing helped the adrenaline rushes except metoprolol so far.

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I was recently offered ivabradine but decided against it because I personally feel in my case the tachycardia is a compensatory physiological response to low blood volume, and that suppressing it would not be helpful. I felt worse on beta blockers for the same reason.  What dose of fludrocortisone are you on? 

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It is possible that your heart rate slowed down too much. Did you happen to check your heart rate while you were having that reaction?

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Unfortunately there is no miracle drug for POTS.  Finding the right medication often takes a lot of trial and error, and it is very specific to the person.  If you already found one medication that is helping you, you are way ahead of the game.  

There may be a few different reasons why you did not see immediate improvement.  It could be the wrong medication for you, the wrong dose, or the med might have an adjustment period. You may want to read through old posts here about this topic, but also check in with your doctor.

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What dose of Ivabradine did they start you on?  It needs to start low and be gradually titrated up.   I was started at 2.5 mg once a day, then twice a day and that was increased after a couple of months.  I cannot tolerate beta blockers either.  I couldn’t even stand on Bisoprolol, even on an exceptionally low dose.

I had initial problems with nocturnal bradycardia (recorded on an oximeter and bp monitor) for which the symptoms were very similar to what you experienced, but, seemingly paradoxically, that stopped when my dosage was raised.  I really argued with my EP when he said I needed it increased to stop the bradycardia, as I was terrified it would make things worse, but he was right.  I am now on 3.75 mg twice a day, no longer have the bradycardia and my quality of life has improved a lot, although I now want to try the volume enhancers I initially refused to try and improve things further.

 

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Thankyou for your replies. I was started on 2.5mg twice a day.. But started on half of that only once a day in the morning. I was the same on beta blockers couldn't even tolerate a very small dose of beta blockers. 

I have since tried midodrine and I'm unsure if I am getting any benefit from it. I haven't had any crashes like I did on the Ivabradine but I feel really jittery on it, like I have had a very very strong cup of coffee... Does anyone know why this would be? This was also on a very small dose too. 

I have had no tests done to determine what type of pots I have. I know Fludrocortisone is doing something for me because when I try to come off it, I feel dreadful and am almost bed bound. I am on 0.2mg of Fludrocortisone and am gaining weight fast :-/ if Fludrocortisone is successful for me? Woukd this mean I have low blood volume pots? But then sometimes I think I have hyperadregenic because I have so much anxiety and adrenaline all of the time. I'd really love to get to the bottom of what's going on. I am feeling so disheartened with it. 

I seemed to have a run of a good few weeks where I felt really well on the Fludrocortisone but since they added Ivabradine, I seem to have fallen backwards and am feeling awful and fatigued again; especially after eating, the fatigue is debilitating. 

Does anyone have any suggestions? I am unsure whether I am supposed to be trying to slow my heart rate down with Ivabradine or if I should be dilating my blood vessels with midodrine. I'm exhausted with it - would Midrodine with a beta blocker be an option?

Cate 

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I actually felt more non-psychogenically anxious and full of adrenaline whilst on fludrocortisone, but will soon be going back on it as I feel I really need the volume boost. This time, I will be trying to mitigate the side effects with losartan - a vasodilator (note this is the opposite of what midodrine does, which is a vasoconstrictor), diazepam and pain relief for the headaches. 

Losartan has some effect on dampening down the actions of noradrenaline. Obviously as a vasodilator which can potentially lower BP, it will not be suitable for all with POTS, but there have been a few small positive studies with it in "low flow POTS" which is the description that best fits me. 

I didn't respond well to midodrine - v high BP, low HR and still presyncopal, but many other people have had great success with it.  2.5mg is a very low dose, maybe you just need a bit more. 

Your blood pressure might provide some clues as to what to try - does it tend to run low, normal or high?

I hope you find something to take the edge off & would love to know what it is if you do!

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When I had my 24 hr blood pressure monitor cuff, I was told that my blood pressure runs, on average, low. 

But then at times I can feel

awful and have tested and have had a perfectly normal blood pressure reading... I suspect that somehow not enough blood is reaching my brain however because I always have brain fog, (the fludro has helped slightly with this). I also have racing thoughts and feel jittery. Especially at night. I always wake two hours after falling asleep feeling jittery which I have always assumed was the tachycardia? 

Cate 

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I have gotten what you are describing many times!! All of sudden I"m so fatigued I can't keep my eyes open but once I'm falling asleep I get these weird surges, or dropping feelings as I describe it.  I wore a monitor to catch what's happening but haven't received the results yet.  I am on 10mg of propranolol 3 times a day.

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Fludrocortisone can also cause a jittery feeling as a side effect .  Why did you try to reduce your florinef? There are withdrawal symptoms from trying to reduce this drug.  If you felt bad when trying to reduce it, it might not be that your body needs it. It might be the withdrawal.

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Oh wow.. Thankyou for pointing that out. I have been feeling a little down since I was under the impression that I definitely needed the Fludrocortisone, and so was pretty much stuck with the drug and all its side effects. Perhaps I was just experiencing withdrawal. I did try and stop it pretty abruptly. 

I tried to discontinue Fludro because I was experiencing hot flashes... Which is where I am at right now; the drug has once again gotten into my system and is causing unpleasant hot flushes and weight gain :-/

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Did you increase gradually up to you current dose or just start it all at once? It may be that your best dose is a bit lower. Where is the weight gain, is it around your ankles or all over? Do you think it is fluid retention or has your appetite increased? If I gain weight when I restart it I will take that as a good sign that I am retaining fluids rather than just getting the unwanted increased adrenaline & vasoconstrictive effects that I previously experienced at low doses without any sign it had helped me retain any fluid.  Has fludrocortisone helped you be more upright/functionall overall?

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It's really strange in the beginning I had a fantastic run of a few weeks where I didn't experience fatigue anymore and didn't need to nap during the day any more. It also helped my brain fog loads. The main thing that definitely improved though and to a certain extent is still improved is that my vision stopped blacking out when I stood up - what could this mean? 

 But then the doctors added Ivabradine to target my tachycardia and I've never really been the same since as far as the fatigue is concerned. The Ivabradine really set me back. They then tried me on midodrine and I experienced the jittery feeling which I put down to increase in tachy. I'm so confused... I just want to know what's wrong with me. I haven't even been given a proper diagnosis. They just threw around terms like 'possible POTS or SNVT...' I don't even know whether I have hyperadregenic pots or autonomic problems caused by diabetes causing postural hypotension. Or if I just have pots cause by low blood volume, because my diabetes isn't poorly controlled. I've even heard of people who have just been diagnosed with dehydration because there body doesn't retain water properly which causes pots like symptoms - sometimes I wonder if I could simply have this. 

 

Confused :-/ 

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Oh and to answer your question... I think it's possibly just fluid retention as my actual weight hasn't changed but my clothes feel tighter and I have gained around my middle especially. It's quite noticeable 😞

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On 12/10/2017 at 8:34 AM, bombsh3ll said:

I was recently offered ivabradine but decided against it because I personally feel in my case the tachycardia is a compensatory physiological response to low blood volume, and that suppressing it would not be helpful. I felt worse on beta blockers for the same reason.  What dose of fludrocortisone are you on? 

I think you ought to reconsider Ivabradine if your physician is offering it.

I recently saw the renowned Dr Grubb and  he started me on Ivabradine. His explanation is that at a certain the increased heart rate is inefficient and offers no benefit. The baroreceptors sense they don't have enough blood, so the body naturally increases HR. In our case, however, due to blood pooling there is no blood to actually pump. The heart is working like crazy (using tons of energy/oxygen) to rapidly pump dry. If you can lower the HR without decreasing BP (which only Ivabradine can do) then the heart will rest longer between beats and fill with more blood resulting in a higher output per beat. 

Im close to labeling Ivabradine a miracle drug for me. I'm using it with Midodrine and my standing HR went from 140-155 down to the 90-115 range within 48 hours, and I've had massive symptom reduction. Midodrine was ineffective solo. I'm certainly not "cured" and definitely still impaired, however I've improved at least 50%. 

Beta blockers decrease BP which negates the benefit from reducing HR. It probably slows the heart but causes even worse blood pooling. Ivabradine is a genius solution for some POTS patients that respond well.

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Thanks vxmike that is really encouraging that you've had a good response, and also good to know Dr Grubb's opinion on it. I haven't ruled it out entirely but do want to address volume issues first - I have a blood volume test scheduled in 2 weeks. I also do not feel I have pooling as such, just general hypovolaemia secondary to not producing renin or aldosterone. My resting HR is also not high which is a concern for me re this drug - I found some studies in which a resting HR of below 60 or even 70 precluded use of the drug (granted these were for other conditions not POTS) but I would be a bit worried about my resting HR dropping too low, particularly whilst asleep.

Has this been an issue for anyone or has your doctor said anything about this?

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50 minutes ago, bombsh3ll said:

Thanks vxmike that is really encouraging that you've had a good response, and also good to know Dr Grubb's opinion on it. I haven't ruled it out entirely but do want to address volume issues first - I have a blood volume test scheduled in 2 weeks. I also do not feel I have pooling as such, just general hypovolaemia secondary to not producing renin or aldosterone. My resting HR is also not high which is a concern for me re this drug - I found some studies in which a resting HR of below 60 or even 70 precluded use of the drug (granted these were for other conditions not POTS) but I would be a bit worried about my resting HR dropping too low, particularly whilst asleep.

Has this been an issue for anyone or has your doctor said anything about this?

Dr. Grubb didn't mention resting HR at all as an issue. In the few days I've been able to do some testing my supine heart rate has been around 55-65 with Ivabradine on board. Without it my supine rate was usually 60-70, so it's a fairly minor difference that doesn't worry me at all. My only concern is that I want to decrease my supine BP at night. My daytime BP is abnormally high due to Mididrine plus my body's natural attempts at compensatory vasoconstriction, and that's not a great thing for my heart long-term especially with the Mitral Prolapse that was found incidentally in my workups. I had great BP usually 100/60 before all this mess started two years ago. I'm a little worried to try something like Clonidine before bed if I already have Ivabradine in my system too. I don't have regular access to a POTS physician willing to be creative  (Dr Grubb visits are few and far between as I am not local and he immensely in demand), so I'm in the experimental camp personally...thus far I haven't found a suitable vasodilator that doesn't also reduce heart rate. 

Even if you have hypovolemia instead of blood pooling POTS I suspect the effect would be similar. Neither of our hearts are completely filling with blood even if the underlying reason is different. If my blood is in my legs and yours doesn't exist it might as well be the same when we're standing!

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9 minutes ago, vxmike said:

If my blood is in my legs and yours doesn't exist it might as well be the same when we're standing!

I really like that way of putting it!

Do you find the midodrine helpful at all or would it be worth considering stopping it? - you mention that alone it didn't help.

I tried midodrine briefly - my BP went high, pulse went low and I was still presyncopal & couldn't stand :( I don't feel it is for me as I am already very vasoconstricted as a natural response to hypovolaemia. 

Alternatively you could maybe ask Dr Grubb about a short acting antihypertensive for overnight. 

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On 1/2/2018 at 5:19 AM, bombsh3ll said:

I really like that way of putting it!

Do you find the midodrine helpful at all or would it be worth considering stopping it? - you mention that alone it didn't help.

I tried midodrine briefly - my BP went high, pulse went low and I was still presyncopal & couldn't stand :( I don't feel it is for me as I am already very vasoconstricted as a natural response to hypovolaemia. 

Alternatively you could maybe ask Dr Grubb about a short acting antihypertensive for overnight. 

I did not find Midodrine helpful solo (just no effect at all) but I think it helps in combination with Ivabradine for me. I have no theories why.

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