Conflicting doctors

[StayAtHomeMom]

Just curious how different people manage having different doctors that have conflicting views. 

My old cardiologist tried a few things before settling on metoperlol. My neurologist (POTS specialist) wanted me on propranolol and midodrine (managed to keep the metoprolol because I have already tried the propranolol and it effected my breathing). Then today I seen my allergist who thinks the metoprolol isn't good for me at all and doesn't like the midodrine either. She also talked about finding the underlying cause of my POTS didn't matter because I was autoimmune and they treat it all the same anyway and I need to change my diet to no dairy, gluten, or soy and that would be a better treatment. (Negative ANA and no "proof" of autoimmune yet, just possible symptoms with strong family history)

I trust my allergist. My son and I have been seeing her for years and she has never steered us wrong, but the constant conflicting views of different doctors is hard to take sometimes. Just wondering how everyone else deals with it. 

[dizzytizzy]

Why doesn't the allergist like midodrine or the beta blocker? Does she think it can be managed with diet only?

So far I mainly deal with a PCP and EP. No real conflicting opinions as of yet as the PCP defers to the EP on all things autonomic. Seeing an allergist and endocrinologist later this year, so we'll see if more docs bring in differing views.

[WinterSown]

I had some conflicting doctors in the beginning but not anymore. The majority of my doctors all have access to my electronic records which are constantly updated each visit regardless of who I see. The few who are not in that same hospital group have no ability to go up against the opinion of six specialists. Period. The more doctors you have that treat your dysautonomia the less doctors can dispute your condition or treatment. If your doctors are in disagreement bring it up on the spot so it won't continue. Ask, no demand! why there is a disagreement and how it is to be worked out so you can heal without conflict from two doctors who have not expressed their opinions to each other. You can always say "I don't agree with your opinion and neither does Dr Other. Call him please and let him know your concerns because I need to be treated effectively. "  I won't tolerate this. I won't let doctors twist up my brains anymore. I have enough problems with dysautonomia and I do not need some wannabe medical opinionist throwing their sabo into the machinery of my care. 

[StayAtHomeMom]

54 minutes ago, dizzytizzy said:

Why doesn't the allergist like midodrine or the beta blocker? Does she think it can be managed with diet only?

So far I mainly deal with a PCP and EP. No real conflicting opinions as of yet as the PCP defers to the EP on all things autonomic. Seeing an allergist and endocrinologist later this year, so we'll see if more docs bring in differing views.

She said something about the beta blocker causing extreme fatigue. I am not sure if she thinks it can be managed by diet alone. She has never been an anti-medication doctor before. In fact she prescribed me magnesium to take with my vitamin d to help up it (it tested at 18 about a week ago). And refilled my Xyzal (my allergy med). 

It is possible it was just a rough day too. She had 2 people come in with allergic reactions and couldn't breathe but came in to her instead of the ER (next door to her office). My appt was at 10:00 am. 

[Pistol]

I totally have been there and my advice is to go all the way with the doctor you trust the most. -- I recently had to go through the same scenario: I had to go to the hospital and the hospital doctor did not know beans about hyperadrenergic POTS - but thought he was all up-to-date because he was young and had seen a few cases of POTS in training. He wanted to change my meds ( after he refused to give me fluids for my POTS symptoms because he felt if I can drink then I don't need them ). I am seen by several specialists for my dysautonomia and my meds have been carefully fine-tuned over years - yet he felt that I take entirely too many meds and if I just stop them I will be fine. He ahd absolutely no understanding of the mechanism of hyperadrenergic POTS and - after he finally agreed to fluids - had a rude awakening because my high BP, tachycardia and syncope upon standing stopped as soon as I got fluids at 125 ml/hr. And throughout the next 18 hours of fluids they stayed down.  --- I have many specialists abut there are only 3 that are allowed to "rule" over me" the ones who take me serious, listen to me and know me. Anyone else has to take a ticket and stand in line ... 

[dizzytizzy]

@StayAtHomeMom: Sounds like a horrific day for your doc! Oh my. I agree with her that a beta blocker can definitely ramp up fatigue, especially at higher dosages. But everyone has an opinion as we all find out 

[StayAtHomeMom]

43 minutes ago, dizzytizzy said:

@StayAtHomeMom: Sounds like a horrific day for your doc! Oh my. I agree with her that a beta blocker can definitely ramp up fatigue, especially at higher dosages. But everyone has an opinion as we all find out 

My issue is sleep. It is so hard to fall asleep. And my doses are small. I take 25mg. 

[Pistol]

@StayAtHomeMom - sleep is a very difficult thing to get under control. I could not sleep for years and many of the drugs they experimented with made it worse. But then I found the right combination of cardiac meds, started SSRI and once my HR and BP were controlled I could slowly develop a routine of rest and exercise that made sleeping possible. I still have interrupted sleep due to the high adrenalin levels but I sleep well enough that I am not that fatigued during the day. When I get stressed and cannot sleep I take low dose Ativan or half of Flexeril and it's enough to make it through the night OK. --- In my experience and what I was told by my cardiologist is that BB make you fatigued in the first few weeks but your body adjusts to it and after a month or so it gets better. That was the case with me. Hope you find the right med. BE WELL!

[Claire]

13 hours ago, WinterSown said:

I had some conflicting doctors in the beginning but not anymore. The majority of my doctors all have access to my electronic records which are constantly updated each visit regardless of who I see. The few who are not in that same hospital group have no ability to go up against the opinion of six specialists. Period. The more doctors you have that treat your dysautonomia the less doctors can dispute your condition or treatment. If your doctors are in disagreement bring it up on the spot so it won't continue. Ask, no demand! why there is a disagreement and how it is to be worked out so you can heal without conflict from two doctors who have not expressed their opinions to each other. You can always say "I don't agree with your opinion and neither does Dr Other. Call him please and let him know your concerns because I need to be treated effectively. "  I won't tolerate this. I won't let doctors twist up my brains anymore. I have enough problems with dysautonomia and I do not need some wannabe medical opinionist throwing their sabo into the machinery of my care. 

Wintersown, I am having the worst time weaning off Clonidine 0.1. Following my drs taper, experiencing the worst anxiety I have ever been thru.you seem to have lots of experience and help people, do you know how I can cope with this and how long it will go on? I took it along with other blood pressure meds for 6 weeks, 0.1 mg and now I was told to cut it in half. Like I said, anxiety terrible and can not sleep. Please help! Thank you. 

[Lily]

In this situation I would be inclined to keep taking them meds AND go on an autoimmune diet.  Readjust the meds if the diet seems to be helping.  And maybe give each doctor the other doctors' contact information and suggest they get together for a discussion about your case.

[WinterSown]

4 hours ago, Claire said:

Wintersown, I am having the worst time weaning off Clonidine 0.1. Following my drs taper, experiencing the worst anxiety I have ever been thru.you seem to have lots of experience and help people, do you know how I can cope with this and how long it will go on? I took it along with other blood pressure meds for 6 weeks, 0.1 mg and now I was told to cut it in half. Like I said, anxiety terrible and can not sleep. Please help! Thank you. 

I looked up Clonidine, it has a wonderful set of side-effects (not!) which should be added emphasis for you cutting down your doses. You are going to have to find a way to catch your zzzzs. I don't have a sleep cycle anymore. I crash after dinner and wake up around midnight. I walk my dogs, I work on the computer, catch up on youtube vids, read, make cakes from scratch. I do all sorts of things that are not too noisy so I don't wake the house. Then I go back to sleep around 530 or 6am, and wake up a few hours later. Wash rinse repeat.

When we travel, for the sake of Hubs, I do take something to help fall asleep. I have a low-dose diazepam script for vertigo and one of them is all I need. When I would rather not dope myself I try to settle down with a cup of herb tea in the most boring flavor I've got in the cabinet, I pick up a book of something equally blah to read and I do drift off. Setting the mood to relax and rest is very important to finding that rest. A little tea, an author I hated in highschool, and a comfy chair or the couch really help me relax and unwind. These are things that I do that help me. You are your own person still and have things that you know make you feel calmer and more settled. Do them. Do something quiet and calm that lulls you away. zzzzzzz

[StayAtHomeMom]

I have been on metoperlol tartrate for about a year. About 3 months or so is when I noticed I slept better if I didn't take my evening dose. I started the succinate version about 2 weeks ago and I take it in the morning hoping it would wear off enough to sleep at night but it doesn't seem to be working that way. I figure I will give it the month, then maybe try it at night. If it still doesn't level out I may have to go back to the tartrate and risk the rebound tachycardia that my PCP is worried about. 

[Claire]

1 hour ago, WinterSown said:

I looked up Clonidine, it has a wonderful set of side-effects (not!) which should be added emphasis for you cutting down your doses. You are going to have to find a way to catch your zzzzs. I don't have a sleep cycle anymore. I crash after dinner and wake up around midnight. I walk my dogs, I work on the computer, catch up on youtube vids, read, make cakes from scratch. I do all sorts of things that are not too noisy so I don't wake the house. Then I go back to sleep around 530 or 6am, and wake up a few hours later. Wash rinse repeat.

When we travel, for the sake of Hubs, I do take something to help fall asleep. I have a low-dose diazepam script for vertigo and one of them is all I need. When I would rather not dope myself I try to settle down with a cup of herb tea in the most boring flavor I've got in the cabinet, I pick up a book of something equally blah to read and I do drift off. Setting the mood to relax and rest is very important to finding that rest. A little tea, an author I hated in highschool, and a comfy chair or the couch really help me relax and unwind. These are things that I do that help me. You are your own person still and have things that you know make you feel calmer and more settled. Do them. Do something quiet and calm that lulls you away. zzzzzzz

Thanks. Think the anxiety will go away soon? 

[WinterSown]

Yes, especially if you worry less about it. 😊

[Claire]

Thank you, Wintersown. I appreciate your help.