jangle

POTS is in neurology's field, although you will see some electrophysiologists who're researchers for POTS such as Dr. Grubb and Dr. Stewart, they're more into academic side of medicine.

For your everyday cardiologists they're not going to be familiar with POTS. You're much better off seeking consultation with a neurologist who's familiar with dysautonomia.

Hello,

Like many, I've been lurking for quite some time and found a lot of answers and advice on the forum for which I am very grateful. I was diagnosed with POTS over a year ago (of course was told I was anxious at first! ). My resting heart rate can be as low as 50 and jumps instantly by at least 40 + beats. As soon as I'm upright, my BP tanks then goes high and my heart rate follows. I got POTS at the same time I had heart failure. I was basically told that the virus that inflammed my heart damaged my ANS. Thankfully, the cardiomyopathy resolved within a week's time, but the other symptoms (shortness of breath, tremors, hot flashes, chills, chest pains, nausea, etc.) have been keeping me company ever since.

I lie down 80 percent of the day but managed to see a POTS specialist in Hamilton in July. I was supposed to go back this past week but was too unwell to get there (I live a few hours away and have bronchitis-laryngitis right now). So they want to do a formal TTT to determine what subtype of POTS I have. They suspect I'm hyper based on my numbers and symptoms. They told me I wasn't the "typical" POTS patient since I also have a prolongued QT interval and documented arrhythmias (NSVT, SVT and the annoying PVCs and PACs). I must specify I didn't have as much as a flutter before POTS and started having them two months after the onset. My arrhythmias are more acute as my other POTS symptoms get more intense but doctors can't make up their mind as to whether they're related to my ANS or not since my heart is structurally sound. They also happen after I've been upright.

I'm wondering if it is worth having a formal TTT and getting off my beta-blocker before hand. My reasoning is the following: I know I have POTS and the medications they infuse one with can trigger arrhythmias and "activate" my prolongued QT, not to mention that after the tilt the medications they use to help with POTS symptoms are contraindicated when one has a prolongued QT interval (midodrine, anti-depressants, octeotride, etc.). I tried Florinef a year ago and wasn't able to tolerate it. So I guess I'm asking if you think it is worth having the TTT and if others have been seen by the POTS specialist in Hamilton and what the outcome was (I know treatment and experiences vary greatly from one person to the next).

Thanks!

There are other ways to expand blood volume (DDVAP or Daily Saline Infusions). In regards to the Long QT syndrome, that is very interesting. What type of virus did you have?

I think the point of doing the TTT is to see how your blood pressure is responding to tilt as that gives one extra parameter that could explain presyncope symptoms apart from the tachycardia.

I didn't have any infusions when I did my TTT, so I don't know how necessary that is. The other tests might also be useful, if they do the QSART to give a broader perspective of your ANS functioning as well as the deep breathing and valsalva exam. Realistically arrhythmias aren't something to be played around with, do you have an EP to consult with?

They will not process an order without an RX...not one of "those" kinds of pharmacies

Liz

I updated my post after you posted this, but I wanted to ask how much do you think the Ivabradine is helping you in terms of your symptoms from 1-10?

1 being not at all and 10 being complete remission.

Jangle,

That's a good idea - going through EP cardio. That's how my POTS was DX'd . Are you trying to come to AZ Mayo? I can tell you who I saw here.

Issie

And if you're coming to Rochester I can give you some names...

I'm going to Rochester, however I don't know how realistic it is for me to expect to be able to get in sooner by making some calls.

derekliz, what pharmacy do you use? If it is possible to do this, I would like to try Ivabradine myself (with prescription of course.)

Flyingsquirrel, thanks for the information. I can sympathize with the shortness of breath issue, but right now my main concern is the presyncope/lightheadedness which is my most bothersome symptom.

I didn't ask but I believe she mentioned she had them tested at other labs immediately afterward that came back negative

I'll let someone way more qualified cover POTS, but here is what IST looks like clinically:

consistently elevated resting heart rate

inappropriate rise in heart rate in response to MINOR exertion (not necessarily postural)

hypersensitivity (inc heart rate) to beta-agonists (isoproteronol, epinephrine/adrenaline, albuterol, etc)

depressed cardiovagal tone (parasymathetic dysfunction)

rhythm must be sinus tachycardia (not SVT, etc)

I have IST (but not POTS) and my heart rate will rise from minor "exertion" like talking, eating, and walking across a room. (I also run about 8 miles a week.) None of these things are physiologically stressful for my body, it is simply an overreaction of my sympathetic nervous system AND a dysfunction of my parasympathetic system.

That sounds like me, in fact the only parameter that was abnormal on my autonomic functioning exam was my cardiovagal system, they diagnosed me with parasympathetic dysfunction. In response to light exercise my HR shoots up quite high. Just a light jog will take me close to 200. The only thing is that my resting pulse is around 90 and not over 100, so I think that's why they diagnosed me with POTS. However, I fit the other things you mentioned.

Anymore it's looking like the research is suggesting an overlap between IST and POTS, it's probable they share many of the pathogenetic mechanisms.

All the more reason I want to try ivabradine.

Does anyone else have any success stories with Ivabradine?

Sometimes I wonder if I have IST instead of POTS. I'm sure I've read it before, but what's the difference in diagnostic criteria between IST and POTS?

I didn't do well on SSRIS. You might have anxiety, that's being associated with POTS in a few studies, however the anxiety is a symptom of POTS not a cause. If your doctor isn't taking your tachycardia seriously then if I were you I would go to another doctor.

And they wonder why people risk buying drugs from the internet! (Corina I am not suggesting for one moment that is what any of us should do, just simply saying i personally can see why )

Well when i say they offer it to POTs people here, its not licensed here for POTS, but we can get it. Ive read quite a lot of your old posts and your tachy rates are very much like mine, i can get breathless when nerves too, so i try my hardest not to ever get nervous becuase im lousy at hiding it lol!!! Your heart beats in your throat!

So maybe if i hadnt have reacted to it, it would have corrected the tachy, it could possibly really work for you. It must be so frustrating knowing about a drug that others in the world can get and you cant.

Well yes it can be frustrating but it really depends on how effective it really is for POTS. I've read on this board that it has seemed to help a few people but I haven't really read cases where it was life altering like the study seems to suggest. This might be due to selection bias, obviously the people posting on this board are doing so because they haven't gotten complete relief. I do like the percentages posted by the study and I do think it is worth a try. There might be some means of obtaining the medication legally and I will ask about them at my next appointment.

I was given Ivabradine a while ago, they do offer it to POTs patiens in the UK, its used for Angina here to as it only cost £1.50 a day, so its a cheap drug. I was gutted that i had a histamine reaction to it with terrrible rash on my legs that was on fire. Such a shame as it did begin to slow my heart down and not really cause my BP to drop. I am sure it could help a lot of people in the US who cant take BB's. Wonder when it will be approved with you guys??

It's been out for years and there really hasn't been an effort that I can tell to approve it. I don't even think the company is even going to try. The process could be decades.

Jangle- the person who e-mailed you back wasn't willing to discuss the study or what it may mean, where they are going from here etc.? So the only way to get information is to actually go to Mayo and try to talk to one of the Doctors there? I'd like to know if the results are promising, if they might apply to a large number of potsies, and if they'll be doing follow up research on this.

My question to him was if there were any clinical studies that were going to open up about using this research as a treatment. At this point in my life I'm only interested in treatments.

I believe the doctors are too busy to field questions from people who aren't even their patients, so I presume I won't get answers until I actually do go to Mayo Clinic. Which according to their wait list is going to be a very long time.

Jangle - did your neuro end up running any autoimmune bloodwork or is she letting Mayo handle the whole thing?

No, she's said she's had two false positives before with that blood test and that she wants me to wait until I go to Mayo.

I keep thinking about that study. Isn't there some way to find out more? Sometimes there will be an e-mail for a Doctor or researcher, but I couldn't find this for the Mayo Doctors. Has anyone who sees Mayo Doctors asked about it?

I already emailed the lead author of the Mayo study, he just replied to me that he does not see patients but that he was forwarding my email to other doctors at Mayo who do. This was about 2 weeks ago, and I haven't gotten a reply back from anyone. Dr. Low who was also in that study also doesn't see patients as I already asked.

Part of the reason why I'm going to Mayo is to try to follow up on this. However, I already asked if there are any doctors doing clinical studies at Mayo and the receptionist told me no. I will see if anything changes over the coming months but it seems that no one is fighting right now.

Usually the testing isn't a scheduling problem...it's the doctor appt. Call every day and see if they have anything open sooner. They are used to people doing this.

They didn't even book me for an appointment, they just have me on a waitlist in line and what they do is whenever an appt opens up they go down the waitlist.

Hi

I am on ivabradine Ive been on it a little while now. I take 2.5mg three times a day (started on 2.5mg twice a day.)

Pros -

No more chest pain

not feeling like my heart is going to come out of my chest on moving ( I have quite bad pots and any change in position will do it)

I can also stand for longer without feeling like Im going to pass out.

Cons

Post prandial hypotension worse

Blood pressure low causing excessive fatigue

On occasion dropping my heart rate below 60 bpm

My sister who also has pots and eds is on this drug and has noticed a massive difference in her symptoms and no side effects.

Ive currently stopped taking it for a few days as the fatigue has been over whelming, I have to have a nap in the afternoon for three hours to be able to function in the evening.

I think its one of those drugs that works for some and not for others. My consultants concern before starting this medication was that my blood pressure would fall due to the lowered pulse. It looks like he was right. Which is a real shame and I am jealous of my sister! lol

Rach

Glad to hear your symptoms have been helped as well as your sister on this drug. You said it helps you not feel like you're going to pass out? My major symptom is lightheaded/presyncope, but mine is chronically felt. Does is help you with your overall lightheadedness?

There was an editorial posted about this study here:

http://content.onlin...ticleID=1358180

Which cited another study that said the longer you're on the drug the better its effects. Unfortunately it's not currently licensed in the USA, but perhaps they'll license it under the compassionate/orphan drug act.

I did find a local neuro, but she's deferring any autoimmunity treatment until my Mayo appt.

The good news is is that Mayo clinic (MN) has its own POTS treatment center. Gotta like the sound of that.

This really discourages me. None of my local doctors know what to do, and the one safe haven of medicine is over a year away.

I think Ivabradine is different than bystolic. I'm wondering if this drug is even available in the USA?

I've looked in the past on these boards and it seems to have helped quite a few people.

http://www.sciencedi...735109712026915

Seems like Ivabradine was successful in this trial. It is true that POTS isn't IST, but their cohort (resting pulse 88 +/- 11 bpm) and (standing pulse 108 +/- 11 bpm) and (during effort 176 +/- 17bpm)

well gosh that sounds like me. My rest pulse is 90 and my standing pulse is 120 and during exercise my rate has been known to go over 200. Even in the Mayo clinic study they're suggesting that IST and POTS might share the same mechanism.

If it works for them, it might work for some of us.

Does anyone know of people who had success with Ivabradine?

It is true that cfs responders to ritixumab eventually revert back, but this is likely due to regeneration of b cells over time and thus the autoantibodies. Unfortunately there isn't optimal therapy in autoimmune diseases.

I would like to, but the immune system is perhaps nearly as complex as the nervous system. In the mayo clinic study they presented only ideas about what could be going on. The group out of Australia cited a study on ciliary neurotrophic factor and NET dysfunction.

The calcium angle is interesting, but I have not read a connection between improper calcium metabolism and POTS. Let me know what your future tests indicate.

This is a question I'd like an answer to as well. I had a rheumatologist from before because I was ANA positive with Raynauds. However, I showed the study regarding autoimmunity to her and called her office and she would not answer my question as to who to go to.

Rheumatologists are typically the people you see for autoimmune diseases, but most autoimmune diseases involve the musculoskeletal system. For this type of autoimmune disease, you're going to need to see an immunologist or a neurologist who has an interest in treating autoimmune neurological disorders.

I've looked for immunologists, but the ones in my area predominately only treat allergies, and my Rheumatologist refused to help me.

Propanolol doesn't require a few weeks to kick in.

10 mg is used to treat anxiety, however it wouldn't be enough to slow a heart rate down significantly.