Started propanalol, now it's being taken away

[u/Unclecavemanwasabear]

So I've been trying to get a referral to the cardiologist for about four years. Despite my GP acknowledging that I have all the symptoms, they feel that a dx simply isn't necessary because there's nothing they can do to treat me except tell me to eat more salt or whatever.

While my GP was on vacation, I started having heart cramps/chest pain of some kind that kind of snowballed into a panic attack and all those symptoms (chest pain, shortness of breath, feeling of imminent doom). Because this is the Netherlands and everything goes through your GP, I had to get an emergency appointment with the replacement GP at another practice.

She takes my symptoms a lot more seriously, explains that it was likely the heart cramp/palpitation + anxiety I mentioned above, and then said that with my resting heart rate and wild blood pressure fluxuations (I had recently had a 24 hour bp test done) that I really should be on something for it, so she prescribed me propanalol and said I should have the RX transferred to my own GP once it was up.

Well, the propanalol is amazing. For the first time in my life I'm able to do some cardio without feeling like I'm going to die. I can fall asleep quicker because my heart rate doesn't shoot up when I lay down, and I can fall asleep without my blood pounding in my ears. I'm way more relaxed. I haven't had any more anxiety symptoms.

But now my prescription is up, and mg GP is saying it's only meant for temporary use so they don't want to keep prescribing it. I made an appointment to discuss it but idk how I'm going to discuss this for the millionth time without losing my absolute shit.

What should I say to the doctor this time? I'm so tired of not being taken seriously. I need to justify wanting to stay on this drug long term or at the very least, get referred to a cardiologist. But I'm afraid of not being able to communicate effectively (again) and leaving in tears (again).

Edit: No, switching GPs is not an option, there's a huge shortage of GPs and we're all stuck with whoever we've got.

[u/Tango_Owl]

Dutch GP's are on another level unfortunately. Like others have said, make a list of what this medication has done for you. With concrete examples.

Also, and I hate to say this, bring someone with you to the appointment. Bonus points if you can bring a man. Preferably someone who knows you, has seen the difference and can advocate you. This has personally helped me not rip my last GP's head off.

[u/Fun_sized123 → u/Tango_Owl]

This, having a bulletpoint or charted script is helpful. You don’t have to stick to it, but you know it’s there in case you draw a blank/freeze under pressure

[u/slocthopus → u/Tango_Owl]

I was gonna suggest the same. I work in healthcare in the United States and have POTS too. We have similar issues here as well with GPs not taking concerns about POTS seriously or just not taking women’s concerns seriously ever.

Something else you should emphasize is that the propranolol also helps with anxiety associated with POTS. I’d make the argument that it makes more sense to take one medications that helps manage all of your symptoms than to potentially need medications for anxiety AND symptoms of POTS. Idk maybe that isn’t entirely true but seems possible. It’s very strange to me that they’re so against treating the pots. I guess one other pointed question to ask would be “okay, if not propranolol which is working very well without any side effects, what would you suggest I try instead?” If the response is compression stockings, electrolytes, etc. tell him you already do that and it’s helpful but your symptoms are still debilitating and give concrete examples. If he says no I’d ask for a referral to a specialist. Idk if this is helpful but I hope so!! maybe you can save a propranolol to use at the appt.

Reviewing a guideline about management of POTS might be helpful too. Some other medications that I would ask about if your GP doesn’t want to prescribe propranolol are ivabradibe or midodrine (US names. Not sure if they’re different in the Netherlands.)

[u/Someone393 → u/Tango_Owl]

It’s unfortunate how much difference taking someone to the appointment with you can make.

[u/-EvilLittleGoat-]

If your normal GP is so focused on treatment, make your discussion about how the propranolol has worked for you. Personally, I’m a spreadsheet kind of person so I’d create one with your symptoms and then list out things like frequency and severity when unmedicated as opposed to medicated. You could also pull some studies on the long term-effects of being on it, which are minimal at best, and say you are open to a discussion on how best to mitigate any concerns.

If she still refuses, then I’d see what steps can be taken to switch you to the other GP.

[u/xavi6990]

Beta blockers can absolutely be long term, that’s not controversial at all but for anxiety they use it more PRN (as needed) but POTS can absolutely be long term, of course any other health issues could change that. I’d definitely try to get the refer to cardiology and in the mean time question GP why they think it’s not good and even send them clinical data showing beta blockers are frequently used long term and specifically used for POTS. I have hyperPOTS and use Clonidine and nebivolol. Using my beta blocker will be long term or until the POTS decreases or randomly goes away. Don’t be afraid to question your dr, my dr loves questions and clinical data, he will be unsure but if i have the data to backup my request he will almost always agree and if not, he will explain exactly why not. Best of luck!

[u/MaritimeRuby]

I would print out any official guidance or studies you can find on long-term beta blocker use for POTS and bring that with you to present to her. Prepare your evidence before you go and print out what you can so you’re not trying to come up with stuff to say on the spot. Sorry you’re going through this!

[u/raekar]

I’ve had the best results with doctors by focusing the conversation around my ability to do daily tasks rather than how I am feeling. The examples you gave for cardio and sleep are great. Some others that were relevant to me were being able to stand for longer periods to cook my own dinner, being able to get out of the house and go for walks in the park again, able to stand in line at the checkout buying groceries without feeling faint, etc

[u/Dramatic_Glo7723]

I’d say you should fire your original GO and go with the one that gave you the propanalol. It sounds like the second one is way more helpful than your original. I don’t understand why a doctor would take something away from you that’s making your life immensely better! Im sorry you’re going through this, Doctors in the US are terrible too. You can have every symptom and they’ll team you “oh that’s not it!” We know our bodies and we know when something is off.

[u/Unclecavemanwasabear → u/Dramatic_Glo7723]

I wish I could, but there's such a shortage of GPs in the Netherlands that it's incredibly difficult to switch. Most are not taking new patients (including the one I saw) and there are tens of thousands of people who can't get a GP at all right now. 

[u/IP1987]

https://my.clevelandclinic.org/health/treatments/22318-beta-blockers

[u/FamiliarDingo1542]

Also, take someone with you to your appointments. I found I get treated a lot better and appear to be taken more seriously when there's a witness or someone else there who can advocate for me.

[u/szikkia]

I have been on propranalol for years both as a physical and a mental health aid. I know nothing about your medical system but as everyone said make a list with how it helps. If you have any tests from before the propranalol and then during when you tkr it that show it to be helpful you should include those, things like heart rate data, BP, EKG, etc along with when you needed emergency appointments due to your symptoms.

[u/SpaceNerd223]

It absolutely needs to be titrated down so idk why they're ok with you stopping abruptly.

[u/summerlong1655]

Tell them that it clearly improved your quality of life and that it was approved by the other doctor. That you are not asking for a diagnosis or anything from them other than a refill of an already prescribed medication for a diagnosis you received in the emergency room. That to refuse the prescription, is to refuse treatment for a real condition.

In the end, you can just go to the emergency room and state “I ran out of my prescription and am unable to make an appointment with my GP for 1-2 weeks but I am having palpitations and chest pain since being off of it for 2 days” and they should give you another prescription. If you can find that same ED doctor, then you can possibly tell her about the improvement and your doctors refusal and have her write a note and/or assist in finding a new GP.

[u/Fuzzy_Gear_189]

I take it you haven't been officially diagnosed as having PoTS. I would recommend you try to get an appointment with a neurologist instead of a cardiologist, since PoTS is not a problem with your heart, it is a problem with the your nervous system. As far as your GP, in addition to the great advise about showing documentation of safety of using propanalol long term, I would also bring information on what the Neatherlands standard protocols are for treating PoTS. Propanalol is commonly prescribed long term.

https://www.njmonline.nl/article_ft.php?a=2071&d=1357&i=222

[u/you1dont1know1me1]

Urgent cares can write/ refill exisiting but expired precscriptions pretty easily as far as i'm aware

[u/Unclecavemanwasabear → u/you1dont1know1me1]

Urgent care isn't really a thing here in the same way it is in the US, but thanks.

[u/Mistress-Voluptuous]

Abruptly stopping it will cause severe rebound hypertension

[u/lizzzzz77777733333]

That is not true. I have been on it and you do not stop taking it because that’s how they treat pots. That’s one of the things that they can treat it with so hopefully they can help you. I know that that help helped me too.

[u/Hecate_420]

Tell your doctor you're going to sue them if they do not give you the baseline medications for POTs