Seeing specialist again — need advice on how to self advocate.

[Scout]

I'm seeing my specialist again soon, and I need advice on how to better self advocate.

Basically, the last time I saw her, she just said to try the same beta blocker that previously made me so much worse. I clearly can't tolerate BBs, and she still insisted on me going back on them without offering anything else. She seemed impatient and I had so many questions that weren't answered. So, when I see her in just under two weeks time again, I want to be better at telling her I need her to help me and not offer things which haven't worked in the past. I know there's lots of other options out there in terms of meds. 

In short: my biggest concern is my BP, which still sky-rockets regularly to hypertensive crisis levels. At rest, it is low (the lowest was around 70/40 or a bit below). When I do any activity, or when I shower for example, it goes upwards of 180/110.

On my file with them, it says that I had "autonomic dysreflexia", confirmed through testing, but they never seem to mention this to me or act like it's relevant. 

Any advice on how to move forward and self advocate for better care would be wonderful. 

I would simply find another specialist, but she is literally the only one in the state and is meant to be one of the best. There's another specialist about 10 hours away from me, and if needs be, I will do my best to get to him, but it would be nice to have my current specialist just offer a better duty of care and help me find a suitable treatment regime. 

Thank you so much for your time. 

 

 

[RecipeForDisaster]

I wish I had some magic words for you, but I have this situation with many of my highly respected physicians. I had an appt last week where I was told the doctor "can’t prescribe my DDAVP or fluids because there isn’t enough data and besides drinking fluids is exactly the same". I tried to reason with him, showing my records of awful BPs and how the fluids fix everything and nothing else does... it’s a huge bummer. The kind doctor who prescribed these things for me is no longer seeing patients, so I’m in trouble, not being able to find anyone to take them over so far.

 

My theory is that they get defensive when they can’t help and they kind of shut down. It frustrates them when they don’t have answers for us, and makes them less interested in thinking creatively. I usually dread these visits. I’m often told "you need to get used to not having a diagnosis/answers, this is your new normal" and when I say I need treatment they say they can’t because I don’t have a diagnosis. Really??

 

Good luck!

[Pistol]

5 hours ago, Scout said:

On my file with them, it says that I had "autonomic dysreflexia", confirmed through testing, but they never seem to mention this to me or act like it's relevant.

Dear @Scout - this a quote from an article about AD from  Wikipedia:

AD occurs most often in individuals with spinal cord injuries with lesions at or above the T6 spinal cord level, although it has been reported in patients with lesions as low as T10.^[

I used to think that my symptoms - similar to yours - are caused by this but my autonomic specialist calls it hyperadrenergic POTS. AD has similar symptoms but is related to spinal cord injury. The hyperadrenergic state in POTS is caused by autonomic dysfunction. 

5 hours ago, Scout said:

In short: my biggest concern is my BP, which still sky-rockets regularly to hypertensive crisis levels. At rest, it is low (the lowest was around 70/40 or a bit below). When I do any activity, or when I shower for example, it goes upwards of 180/110.

This sounds like hyperadrenergic POTS to me, which runs in my family. Beta blockers CAN be effective but are not for all people. My sisters and I all take Carvelidol, which has proven to be the only BB effective for us. However - it alone is not enough for us, we also take Diltiazem ( a calcium channel blocker ) and guanfacine as well as many other meds needed to control our fluctuating BP's. Your specialist may have to experiment with other meds; it took trials of many medications ( pyridostigmine, Midodrine, several beta blockers, clonidine, Norvasc etc ) before we found the right combo. Here is a list of meds commonly used in the treatment of hyperadrenergic POTS ( assuming that is what you have  ), from an article on our website: 

Some of the medications that have been found helpful are:

• Adderall, Ritalin.
• Florinef.
• Clonidine.
• Beta-blockers (especially the combination of Carvelidol and Labetaiol)
• Midodrine.
• SSRI/SNRI.
• Modafinil.
• Methyldopa

 

Maybe your specialist would be open to discuss these meds with you. ---- As in advocating for yourself: I used to bring literature about hyperadrenergic POTS with me to my appointments in addition to a list of questions. If the physician would not address my concerns or act ignorant or refuse to change meds I simply fires him/her - I had to do that to 5 cardiologists before finding the one that knew what was going on.  And that one is an 8 hour drive away!

[statesof]

Hi @Scout, as others have said I think it is difficult to, in a short office appointment with a doctor who may or may not be the best communicator, to help them to understand your condition, current issues and what has worked/ hasn't worked and get to a place where something beneficial comes out of the appointment. I've typically had the doctor either not really hear me when I speak to them or have no idea about POTS but are sure that all my symptoms must be that and so I should go back to a POTS specialist (who are also without full answers).

What I have found that helps is create yourself a plan prior to the appointment prioritizing the most pressing issues, something like this:
1. Here is my diagnosis
2: Here are the symptoms I need helped for a better quality of life
3. These are the things that have/ have not worked
4. How can we best treat those today?
5. Is there other testing that will better allow us to treat those?

And practice your delivery of what your going to say with time and understanding being the biggest hurdles for the appointment. I know for me trying to give a 10 year medical history with many ups and downs and question marks throughout it is impossible to adequately give to a doctor only has 10-15 minutes to get caught up.

And then also being realistic; there is no general 'cure' for POTS and research and understanding on this illness is still in its infancy, but different symptoms can be managed sometimes well sometimes not depending on the person and their particular reaction to a medication -- what works for one of us may do nothing for another. All these are just based on my own experience and struggles communicating with doctors, some good some bad, so don't see this as in any way professional advice.

[p8d]

Oh I am so sorry that you are going through this.  I agree with what everyone else has said.  I come armed with articles, relevant sections highlighted, a list of questions and always try to see a specialist nurse practitioner.  I have NP s for both cardiology and neurology.  They have 45 minute appointments as opposed to 20 for the actual doctors and are both brilliant about dysautonomia.  If they don’t know they ask the doctors.  If I am seeing my male cardiologist, who tends to shrug and say “well, you’re autonomic nervous system doesn’t work properly” if I have stumped him, I always make my husband come into the room with me.  Unfortunately, that helps.  I am not being sexist guys, just stating a fact that we women understand well.  

[Sushi]

21 hours ago, Scout said:

I clearly can't tolerate BBs

I have had pharmacogenetic testing (testing medications with my genetics) and found that one of the most common BBs (metroprolol) is a drug I should never take. With others I may need a higher dose, or a lower dose. This is one possibility that could affect your response to BBs. I had to try several before finding one that suits me. I've also taken diltiazem successfully.

I always make a printed list of questions and sometimes my EP will want to read a quote from a research article that I have printed on my question sheet. I open a document for questions a couple of weeks before an appointment and add to it and refine it as I think of new questions or approaches. Good luck!

[Scout]

@Sushi That's very interesting that you also can't take metoprolol. Do you know if it's all BB's, or just that one? 

I will get tested for that — that sounds very useful! Thank you! 

I'm not sure why, but metoprolol made me so much worse, and seemed to also make me more hypertensive, which was very confusing. I need to find something that works for these BP spikes that I am still having. 

As much as I dislike the low BP episodes, too, I can at least cope with them and just lay down to rest, have some more salt to compensate etc. 

@p8d It's sad isn't it, just how much more doctors listen to men! I have definitely seen that happen a lot. Thank you for the tips! I'll certainly bring information with me and really press for better treatment options. 

 

[Scout]

Apologies that I haven't replied to everyone. In quite a flare at the moment so energy is low, but I just wanted to sincerely thank you all for your helpful feedback.

It is so very appreciated 🙂

[Sushi]

14 hours ago, Scout said:

@Sushi That's very interesting that you also can't take metoprolol. Do you know if it's all BB's, or just that one? 

I will get tested for that — that sounds very useful! Thank you! 

Just metoprolol—I take propranolol instead. My genetics report says about metoprolol: Based on the genetic result, this patient is at risk of excessive beta-blockade at standard dosage....a poor metabolized (me) May require a 75% dose reduction.