POTS or not POTS - really confused.

[Shell]

Some time ago I did two poor man's POTS tests. Lay on the sofa for 15 min and my pulse went down to 88. Stood up and it hit 126 fairly quickly and then hovered around 115 to 126 over the next ten minutes.
Both times I did this I got a very clear spike in HR of more than 30 bpm and over 120, which I thought meant POTS.

Saw the Cardio on Tues.
He says that I don't have POTS because on a 24hr ECG my HR didn't go above 126. He has evidence that it can hit 148 on a bad day, but he does't seem to take my own measurements seriously even though I photoed the pulse-oxometer and Sphig.

He has dx Inappropriate Sinus Tachy, because my sitting resting pulse is 100+ but when I said I thought my supine pulse had to be high as well, he said no.

He has prescribed Ivabradine.
In doing so he said "You better not have POTS as this is contraindicated."
Having had some nasty palpitations and black outs last night while sitting still I thought I might check out Ivabradine and POTS.
Research papers, even by Julia Newton show that Ivabradine is used to treat POTS with varying levels of success, but I can't find a single published paper that says it's contraindicated.

So I am now very confused. I like this Cardio, but the feeling that he is either not as specialist in POTS as he says he is, and that he has lied to me, isn't helping by already almost non existant trust in doctors.

Anyone have any ideas about this? Have I missed something?

 

[SOC]

@ Shell
I realize you are in the UK so any mention of ME/CFS may result in horribly inappropriate treatment, but you might show him what the ME/CFS Primer for Clinical Practitioners says about cardiovascular/autonomic issues in ME/CFS. The treatment part says (among other things)

Fludrocortisone, 0.1-0.2 mg/day, can improve symptoms attributable to hypotension and hypovolemia in some patients, but the effect may not be long lasting. In patients taking fludrocorti-sone, blood pressure and electrolytes should be monitored regularly with potassium supplementa-tion if necessary. The risk of potassium depletion from the use of fludrocortisone can be reduced by eating a banana or kiwifruit daily. Low dose beta-blockers, such as atenolol (25-50 mg) or proprano-lol (10-20 mg), are useful in controlling tachycardia or palpitations associated with postural hypoten-sion.

It might be worth taking a copy of the Primer with the relevant parts highlighted. It worked for my cardiologist.

Your cardiologist might be a "specialist" in POTS, but is he knowledgeable about other forms of autonomic dysfunction like NMH, hypovolemia, or hyperadrenergic POTS which are also seen in ME/CFS? Did he test your BP? Does it go up or down when you stand for a while (up to 30 mins)?

 

[Sea]

I'd say he is not a specialist in POTS although the criteria for POTS is somewhat debated. My daughter was diagnosed by ttt with POTS by a neurologist, but a cardiologist has disagreed because her bp plummets as well as the hr increase. It's a controversial area.

Anyway, my daughter is on Ivadradine and finding it helpful but it took a little while to get the dosage right. Her resting hr dropped to 35 after the second dose so she is on a much lower dose than usual.

 

[SOC]

I'd say he is not a specialist in POTS although the criteria for POTS is somewhat debated. My daughter was diagnosed by ttt with POTS by a neurologist, but a cardiologist has disagreed because her bp plummets as well as the hr increase. It's a controversial area.

My daughter was diagnosed with POTS by a cardiologist because her BP drops and her HR increases. I, however, was told I don't have POTS because my BP and HR both increase. Clearly all the docs don't agree (or are maybe ill-educated) on POTS.

We both were given fludrocortisone (Florinef) which helps us both because we both have low blood volume.

 

[Valentijn]

Sometimes I have spells of really bad narrow pulse pressure, and I get postural tachycardia ... but the tachycardia seems like it's caused by the narrow pulse pressure, and goes away when pulse pressure improves a bit. Not sure what that would be called, but diagnosing and treating it as POTS probably wouldn't be helpful at all.

 

[Allyson]

Licorice

My daughter was diagnosed with POTS by a cardiologist because her BP drops and her HR increases. I, however, was told I don't have POTS because my BP and HR both increase. Clearly all the docs don't agree (or are maybe ill-educated) on POTS.

We both were given fludrocortisone (Florinef) which helps us both because we both have low blood volume.

root also helps boost blood volume according to my specialist. So does IM vitamin b12 according to the packet info and I find that helps me sleep much bettr for whatever reason.

 

[Shell]

Thanks for the replies. I have been a bit worried about this. When he gave me the Ivabradine he said, "It had better not be POTS as this is contraindicated with POTS."
I felt so ill yesterday- resting HR 127 and upright 127-139 that I thought I'd better do some research. Turns out that even Julia Newton here in the UK uses this drug to treat POTs with varying success, but that it has been shown to be pretty awful for Potsies with NMH as well.
I think the Prof believes that POTS is only found wit NMH and as my BP spikes upwards and runs high he has dismissed POTS altogether.
I did say I wanted to be tested for HyperPOTs but I am not convinced he understood me.

I have come across papers that show IST and POTS can go together anyway, so it isn't an either or as the Prof seems to think. You can have both.

I was raced in and out so fast that I couldn't ask anything.

My pulse pressure can be as low as 10 but more often its around 60 to 70 which makes me wonder what's going on.
It's so frustrating and it isn't helping that my dh (bless'im) thinks I should just take the docs word for it because after all hes's a doc and a Prof no less.
But then after ten years of being given the run around and being up-front lied to I can't have quite the same attitude.

Anyway first dose of 5mg today up from 2.5mg bd - let's see how it goes.
My dd who bought me my little glittery drugs bag has said she will look out for a rucksack or pillowcase for me to keep them in now as I'm on so much stuff it doesn't fit the glittery bag any more.

I am hoping that even if the docs never get it right that by accident I might find the drugs help me if they can be adjusted properly.

 

[bertiedog]

Hi Shell

I also live in the UK and have had to sort out my POTS issues myself but my GP did give me Propananol 20 mg once or twice daily and also a tiny dose of Fludrocortisone. Both of these make me feel much better. Looking at your post above I really think you would benefit from a betablocker like Propananol because it will stop those fluctuations in bp. You probably know that things like caffeine can set it off but if you are taking the betablocker regularly it can stop this from happening.

As we are all different I think we have to find the right dose but for me 20 mg on getting up is very helpful but on somedays I need to take another dose around 3 pm especially if I am going to take my dog out for a short walk. Anything physical will push my bp up so I feel a lot more comfortable with the betablocker helping to control this.

I also find that I only need just a quarter of a tablet of Fludro and I cannot take that every day or I get slightly too high bp in the afternoons and can feel this in my head but again the betablocker will help.

Have you asked your GP at all about trying a betablocker?

Pam

 

[Shell]

bertiedog It is so frustrating that we have to work it all out for ourselves and then play "make it look like his idea" with the docs to get treatment.
I'm on Candesartan which is an angiotensin II antagonist for the hypertension.

I can't have beta blockers (even the cardio specific ones apparently) because I'm on level 5 treatment for asthma and as even that is only just holding things steady and I still need regular steroids, neb and antibios, even i have to agree with the docs that a beta blocker is probably not for me.

I came off all caffeine for ages to see if it would help both the hypert and the bloomin' tremor and twitching and jerking. So far no difference so I have gone back to my morning coffee but I still have Redbush and plenty of water during the day. With the occsional weak Lady Grey as a treat I'm English, we have to have tea. It solves everything.

I have wondered about heart failure. I am carrying around so much fluid - ankles, calfs, knees and top of my stomach that I am just a blobby swimming pool. I was on a diuretic but it just made me feel really ill. Perhaps I should find a natual diuretic that works well and doesn't make me ill.

 

[ahimsa]

Shell, I'm so sorry that you're running into these kinds of problems! As you said, it is very frustrating that we have to go through so much trial and error with these different drug treatments to see which of them (if any!) will help with our own symptoms. Even those who have very similar types of Orthostatic Intolerance (at least, when comparing the list of symptoms) can have quite different reactions to treatments.

And it also seems to be true that even the experts still don't agree on either the names or diagnostic criteria for the different types of OI. Here's a quote that I've posted before (from http://www.research1st.com/2011/06/19/the-outs-and-ins-of-oi/ ):

There are many types of OI. When you round up experts who study the autonomic nervous system (as we did at one of our research symposia in the year 2000), they have trouble agreeing on the names and definitions for the various types of OI. (Does that sound familiar?) OI and other forms of dysautonomia are common in other conditions like MS and Parkinson’s; it also occurs in less well-studied conditions like Ehler’s Danlos Syndrome, Marfan syndrome and Shy-Drager Syndrome. So, it’s not unique to or diagnostic of CFS.

Regarding your comment about POTS v NMH:

I think the Prof believes that POTS is only found with NMH ...

This is the first time (that I remember ) that I've ever heard this! In fact, I'm pretty sure that I have read that a patient can have either NMH, or POTS, or both. I wonder why she thinks this?

For one view on OI (not the only view, of course!) here's the patient info document (PDF) from Johns Hopkins:
http://www.cfids.org/webinar/cfsinfo2010.pdf

And here's an article at medscape by Dr. Julian Stewart and others:
http://emedicine.medscape.com/article/902155-overview

I've posted these links before, so these may be old news for you, but I thought I'd post them again.

 

[Shell]

I think one of the major problems we face is that doctors don't like anything that presents differently in different people. If most people they see have POTS with NMH then they decide that' s the only flavour of POTS they'll accept, so if you have POTS and normal BP you're ok; regardless of HR and other symptoms, and if you have POTS with leaping about BP like me, it can't be POTS, and if it comes with IST, then even though there are plenty of research papers showing people can have POTS and IST, (after all they're both ANS problems), then it's not POTS and so on.

My guess is I have a combo form of hyperadrenergic POTS with IST overlaying it. Thankfully the Ivabradine seems to be helping as my upright pulse is around 110 now which is a massive improvement. Weirdly my resting pulse is still around 100, but it's early days.(only been on it a week and a bit).

OI seems to effect so many people in such a variety of ways it doesn't lend itself to a tick-the-box approach to healthcare.

 

[SOC]

Shell -- your POTS (or whatever we're going to call it) and mine sound a lot alike. It turns out that a large part of my difficulties are due to low blood volume. I don't know if you've increased fluids as part of your POTS program but if not, it might be well worth trying. My BP was more stable and my HR lower when I started drinking 3-4 L of electrolyte water daily -- particularly 0.5 L immediately before bed and 0.5 L before getting out of bed in the morning.

Florinef was also a big help with tachycardia, much more so than meds designed to lower heart rate. I feel a lot better, my resting HR is lower and my upright HR is much lower. I can stay upright without my BP and HR getting higher and higher.

IF you have low blood volume, Ivabradine may make you feel worse because the reason your HR is high would be because your body is sensing insufficient blood flow in the brain and is signaling the heart to pump harder to compensate. I would think that if you turn off that compensation with Ivabradine without improving blood flow to the brain some other way, you are likely do feel worse even though your HR is lower.

 

[Shell]

SOC I have increased fluids a lot. I get salt cravings as well, which is ironic when the Hypertension clinic doc told me to out salt. I never used it much in cooking but these days I just need it. I am not going to confess that to a doc!

I am not sure about my blood volume. I do get pulse pressures as low as 10 sometimes but mostly it's 60 or even 70 with some occasional nice healthy 40s thrown in. I've wondered if high pulse pressure with hypertension is a sign of some flavour of EDS IV but who knows.

So far on the Ivabradine I haven't felt much different though my tacky is less. My breathing though has gone to the dogs. I don't know if that's just a rubbish breathing phase like I get so often or a side effect. I'll have to see.

I do wish this illness was simple!

 

[ramakentesh]

prettymuch everything your cardiologist said is - respectfully - incorrect.

POTS can be diagnosed even if the tachycardia does not exceed 126. An increase of 30 beats per minute on orthostatis is considered diagnostic.

More importnatly, ivabradine is now often prescribed for POTS because it is able to reduce the tachycardia without reducing stroke volume unlike beta blockers thus does not worsen symptoms of orthostatic intolerance (unless the tachycardia is compensatory).

So having clarified those points Id go on to suggest reviewing your standing blood pressure. Significant drops are not indicative of POTS.

Most important thing is that further investigations of a POTS diagnosis are rarely conducted, rather treatment is trialled and assumptions made depending on responses. Florinef, midodrine, dihydroergotamine, mestinon, are the usual suspects. DDVAP, octreotide, procrit if your lucky. Clonidine, methyldopa if your super hyper.

 

[ramakentesh]

You can push for a QSART test to check for neuropathy which some would suggest indicates you have neuropathic POTS.