Ivabradine / Corlanor - 80% Response Rate in POTS Patients (Nov / 2017 Study) + Poll

[arboretum]

I doubt that CFS being misdiagnosed as POTS has much truth - in terms of severity, symptoms of CFS would be much more severe than POTS. POTS and CFS, also, I think are pretty distinct conditions, even if CFS very often also has associated POTS.

Most drugs, especially ones with relatively little evidence, and especially ones for other conditions, turn out not to be helpful. It isn't really worth the time, energy, money and stress to go around trying them until there's enough evidence that one is almost certainly effective.

 

[Hip]

I’ve tried increasing salt via salt tabs but not quite to the levels you mentioned. Using a scale to measure water retention is an interesting idea

I found that taking more than around 2 grams of salt in one go would irritate the stomach, so to prevent this irritation I used divided doses, three times a day. Also drinking a lot of water with the salt helps prevent irritation.

It sounds unhealthy to be taking all that salt, given that we are always told excess salt is bad for us, but if you think about it, provided you are drinking extra water which you then retain, to bulk out your body, you are not actually increasing the salt concentration in your body. Each liter of body fluid naturally contains 9 grams of salt.

I was dropped from the POTS clinic because I refused to attend a certain CFS clinic in Crawley's neck of the woods, for a 6 week course of CBT which would apparently "fix" my ME sufficiently to allow the POTS medication to work. How I laughed . . . at which point my consultant said, "Well, it won't work if you don't believe in it!".

Yep, here in the UK we are still back in the Middle Ages, where illnesses were once thought to be caused by bad spirits that you needed to exorcise.

 

[AdamS]

@AdamS how long were you on it?

@Jesse2233

About a week...it made me so tired that I had to stop taking it. After attempting 3 treatments for POTS - Midodrine, Ivabradine and Propranolol, none of them worked (2-3 month trials for Mid/Prop) and I was essentially discharged from the system.

My only management option since then has been pacing really, which all of my consultants reccommend. I haven’t been able to work for almost 12 months even despite pacing very carefully.

*I did try salt loading and Nuun too but the benefits were barely noticable.

 

[sb4]

My experience: Took recomended amount for first 4 days, kept getting progressively better with heart symptoms, then after day 4 I experienced a big worsening which continued until I stopped the drug and it then took a few days to get back to base line. Can't remember what the exact symptoms where however it was a year ago, felt like my viens where being pinched, worrying heart symptoms (more than usual) and overall worsening.
Tried again at half the dose, same thing execept it took longer. Tried again after that, same thing.

 

[Revel]

in terms of severity, symptoms of CFS would be much more severe than POTS.

Why so? POTS can be mild, moderate or severe and be every bit as disabling as CFS. I have had both for over 40 years and remember having a near total remission from CFS symptoms, only for POTS to come to the fore. It can be a pretty scary and brutal condition in its severe form.

also, I think are pretty distinct conditions, even if CFS very often also has associated POTS.

In my experience, when you have both at play, it can sometimes be very difficult to distinguish between them in terms of certain symptoms.

Also, in the UK at least, very few clinicians understand what they are looking at in regard to CFS and POTS. Here, it's not unusual for a patient to go undiagnosed, not just for CFS but also POTS, for years. I saw 3 cardiologists, not one thought to test me for POTS. Instead, it was suggested that I had anxiety, and possibly depression, caused by "worrying excessively" about my health, and that these mental health issues were most likely related to my diagnosis of CFS.

I eventually had to "diagnose" myself with POTS via the internet, change my GP then persuade him to refer me to a syncope consultant who had an interest in OI. At first, both my new GP and the syncope consultant were 100% convinced that I had been misdiagnosed with CFS and that I had severe POTS only. Two years further on, they finally agreed that I have both.

In theory, you would expect that a medical professional could easily differentiate between the two physiological conditions, but in practice it's not that simple.

 

[AdamS]

In theory, you would expect that a medical professional could easily differentiate between the two physiological conditions, but in practice it's not that simple.

Very true. I made a thread about this a while back which may be of interest: http://forums.phoenixrising.me/inde...ing-pots-from-me-harder-than-it-sounds.50820/

 

[ryan31337]

I've been taking Ivabradine for almost 12 months, 2.5mg twice a day.

I find it to be more effective than low dose bisoprolol (less side effects too). Personally, I feel the Ivabradine has an overall positive effect on my energy levels & capability. If I had to be specific I would say I particularly notice:

- Reduced tachycardia & breathlessness on standing
- Reduced POTS 'anxiety' surges on busy days spent upright for longer
- Greatly reduced nocturnal tachycardia that caused sleep hyperventilation and waking

I had a 5 day break from Ivabradine, cold turkey, in prep for a repeat CPET off-meds. It was not pretty. For the first and only time in my life I felt I was close to experiencing an anxiety attack and my heart rate was 120+ seated.

 

[manasi12]

I have inappropriate sinus tachycardia and POTS too. My pulse goes from 100 + at rest to 140 + on standing. BP initially drops and then goes up. So basically I have severe OI resembling hyperadrenergic POTS. But intriguing piece is catecholamines drop on standing.
When I first tried ivabradine, I got catchlike chest pain. On my cardiologist's insistance , tried it twice again but any drop in pulse rate causes same chest pain. Then once again tried in evening withl low dose Atenolol and florinef in morning. Finally was able to tolerate it at 2.5 mg. Reduced evening tachycardia but couldn't control BP surges so back to Atenlol.

 

[Peyt]

I've been taking Ivabradine for almost 12 months, 2.5mg twice a day.

I find it to be more effective than low dose bisoprolol (less side effects too). Personally, I feel the Ivabradine has an overall positive effect on my energy levels & capability. If I had to be specific I would say I particularly notice:

- Reduced tachycardia & breathlessness on standing
- Reduced POTS 'anxiety' surges on busy days spent upright for longer
- Greatly reduced nocturnal tachycardia that caused sleep hyperventilation and waking

I had a 5 day break from Ivabradine, cold turkey, in prep for a repeat CPET off-meds. It was not pretty. For the first and only time in my life I felt I was close to experiencing an anxiety attack and my heart rate was 120+ seated.

Hi ryan31337,
May I ask which type of tachycardia were you diagnosed with?
The reason I ask is that apparently Ivabradine is recommended for Inappropriate Sinus Tachycardia however it can be effective in POTS as well (in some cases)
So I wonder if there should be 2 separate studies done regarding effectiveness of Ivabradine, one for IST and one for POTS.
Also, did you suffer from frequent headaches prior to start of Ivabradine?

 

[ryan31337]

Hi @Peyt,

The electrophysiologist reported that my 7-day ECG revealed an IST pattern and that my tilt table was absolutely classical of POTS. He (and others) feel there is an overlap between IST and POTS, though if I look at a 'classical' IST presentation I would not fit it very well and identify much more with POTS.

Having said that, referring to IST might also just be a necessity from a guideline/political point of view as Ivabradine is only indicated for IST and is used off-label for POTS.

Headaches for me are not a big problem, migraine is however. I seem to have quite a low threshold for migraine and can experience them from many different triggers, so its hard to say if Ivabradine has helped - I think the overall improvement it has provided makes it likely though.

Ryan

 

[Peyt]

Hi @Peyt,

The electrophysiologist reported that my 7-day ECG revealed an IST pattern and that my tilt table was absolutely classical of POTS. He (and others) feel there is an overlap between IST and POTS, though if I look at a 'classical' IST presentation I would not fit it very well and identify much more with POTS.

Having said that, referring to IST might also just be a necessity from a guideline/political point of view as Ivabradine is only indicated for IST and is used off-label for POTS.

Headaches for me are not a big problem, migraine is however. I seem to have quite a low threshold for migraine and can experience them from many different triggers, so its hard to say if Ivabradine has helped - I think the overall improvement it has provided makes it likely though.

Ryan

I see, how about blood pulling to the legs?
Many patients experience migraine because the blood pulls too much to the legs/feet and not enough to the head and this causes Migraines. I had heard that Ivabradine has helped some patients with the blood pulling so just wondering if that was something you had and if it helped? Usually blood pulling to the legs/feet causes a sensation of heaviness in the lower body which prevents the person from doing any strenuous exercising or even standing for too long.

 

[ryan31337]

Yes, I have definite signs of impaired circulation to limbs. Acrocyanosis & livedo reticularis are quite common. Also some symptoms like heaviness, aches etc.

I believe the fairly well accepted working theory is that venous return is impaired, so filling pressures are reduced. This is compounded by tachycardia reducing output even further. Midodrine improves venous return, Ivabradine reduces tachycardia, together they improve cardiac output. There's increasing evidence (and controlled trials planned) for Mestinon also increasing filling pressures - something I really want to try as Midodrine isn't a great idea for someone like me that gets hypertensive episodes too.

 

[Peyt]

Yes, I have definite signs of impaired circulation to limbs. Acrocyanosis & livedo reticularis are quite common. Also some symptoms like heaviness, aches etc.

I believe the fairly well accepted working theory is that venous return is impaired, so filling pressures are reduced. This is compounded by tachycardia reducing output even further. Midodrine improves venous return, Ivabradine reduces tachycardia, together they improve cardiac output. There's increasing evidence (and controlled trials planned) for Mestinon also increasing filling pressures - something I really want to try as Midodrine isn't a great idea for someone like me that gets hypertensive episodes too.

Thanks for your explanation,
I decided to do a little search on plant based herbs to see if there is an alternative to help the venous return and
apparently an herb called Butcher's broom is recommended:
http://www.askdrmao.com/natural-health-dictionary/butcher’s-broom/

Now I am curious to try it as it's available without a prescription...
Has anyone tried this herb to improve venous return?

 

[Gingergrrl]

Yes, I have definite signs of impaired circulation to limbs. Acrocyanosis & livedo reticularis are quite common.

I was just curious @ryan31337, is livedo reticularis always a sign of impaired circulation to the limbs or are there other causes? I was asking b/c often after I get IVIG, I have LR on my legs. My main doctor and my dermatologist felt that it was due to an autoimmune cause (in my case) and neither felt it was dangerous. I am not really sure why it happens after IVIG and it does not happen every single time.

 

[ryan31337]

Hi @Gingergrrl,

I don't know a great deal about it, other than my POTS cardiologist suggesting it was probably related to my larger circulation issues. It seems like there a 101 causes for it, but it is noted as happening quite frequently in auto immune disease.

I notice on migraine days it is much worse. I assume the migraine and the livedo reticularis are both a result of something affecting my circulation.

Ryan

 

[Gingergrrl]

Hi @Gingergrrl, I don't know a great deal about it, other than my POTS cardiologist suggesting it was probably related to my larger circulation issues. It seems like there a 101 causes for it, but it is noted as happening quite frequently in auto immune disease.

Thanks and I was just curious. I know we have discussed this before but I can't remember off the top of my head, does your POTS cardiologist think that you have "Autoimmune POTS" vs. another type (or does he or she not distinguish sub-types)? I have never found a Cardio to be useful re: POTS in my case beyond confirming the diagnosis and prescribing beta blockers, Midodrine, etc, (which are helpful). But he would never know anything re: livedo reticularis or autoimmunity!

 

[ryan31337]

I raised the topic of IVIG, autoimmunity etc. back in Oct 2016 when I last saw him. He didn't really want to venture an opinion, other than to suggest we don't yet know what's really going on and that I had a snowball's chance in hell of getting IVIG on NHS anyway.

He's not a researcher in the field and I think pragmatism is the key deciding factor. No point testing novel antibodies and the like if he can't treat them due to limitations of the guidelines, even if he did think it was important

 

[manasi12]

Thanks and I was just curious. I know we have discussed this before but I can't remember off the top of my head, does your POTS cardiologist think that you have "Autoimmune POTS" vs. another type (or does he or she not distinguish sub-types)? I have never found a Cardio to be useful re: POTS in my case beyond confirming the diagnosis and prescribing beta blockers, Midodrine, etc, (which are helpful). But he would never know anything re: livedo reticularis or autoimmunity!

Hi ..I do have severe POTS and livedo reticularis too.My extremities were always cold since almost 20 years but I noticed Livedo reticularis 2 years ago.There are some important autoimmune markers too. My senior rheumatologist is quite uncertain that they are related. Another one was sure that it is due to autoimmunity. My guess is the autoantibodies are the culprit for my severe MCAS as well as circulatory issues.
I wanted to pm you but I guess you are busy with some issues. No worries, I will try again in future.

 

[manasi12]

I was just curious @ryan31337, is livedo reticularis always a sign of impaired circulation to the limbs or are there other causes? I was asking b/c often after I get IVIG, I have LR on my legs. My main doctor and my dermatologist felt that it was due to an autoimmune cause (in my case) and neither felt it was dangerous. I am not really sure why it happens after IVIG and it does not happen every single time.

My LR reduced on aspirin but had to discontinue due to some other problems . I remember you don't have APS antibodies. May be the slightly increased thickness of blood from IVIG causing LR.
I found one more cause in my case is inappropriate vasoconstriction. Whenever I'm exposed to cold or emotional stress , it gets more pronounced. Of course, it is present at other times also.

 

[Gingergrrl]

My LR reduced on aspirin but had to discontinue due to some other problems . I remember you don't have APS antibodies. May be the slightly increased thickness of blood from IVIG causing LR.

I am allergic to aspirin and in general I do not have LR, only sometimes after IVIG. By "APS autoantibodies" I think you must mean anti-phospholipid (?) and if so, you are correct that I do not have them.

That is interesting that the slightly increased thickness of the blood from IVIG could cause LR. Would that be related to autoimmunity or could it happen to anyone who has IVIG for any reason?

I wanted to pm you but I guess you are busy with some issues. No worries, I will try again in future.

I am sorry about that and at the moment, it is too challenging for me to keep up with PM's and I don't want people to send them to me and think I am just ignoring them. I am dealing w/a family emergency and have eliminated just about every aspect of my life except taking care of my step-daughter, my dog, and posting on the public part of PR. I receive a lot of PM's and just could not keep up w/them. I'm debating shutting off the PM feature (just temporarily) and need to reply to one of the moderators re: this issue.