Doctor Isn't Listening

[scarfgirl]

Alright, so after having my florinef dose increased again , I sent off an e-mail with my latest BP results (sitting and standing). I also explained in the e-mail what, to me at least, were three important things, that

1. Due to a goof on my part, I had accidentally taken three tablets of florinef a day instead of the two I'm supposed to be on for a few days. I stopped as soon as I realized what I was doing, but had taken three tablets for almost a week before I figured it out.

2. Despite slightly improved numbers I'm still as unable to function and feel just as bad as when I first showed up in his office and that this really bothered me.

3. While I was told to avoid caffeine completely, and had followed that advice for the first couple of months, I've since added it back in (a cup of coffee every other day) and have noticed a HUGE improvement in my ability to think and move around in the hours immediately following ingestion. I wanted to know if I could either try ingesting caffeine occasionally, or if there was some other medicine that could provide similar results. Also wanted to know why caffeine helped so much.

This is the e-mail I got back:

Stacy,

Dr. Watkins read your email and said that you don't need 3 Florinef per day and that your blood pressures are fine.

He said you must avoid all caffeine.

As soon as I read that e-mail I saw red. The telling me I don't need 3 florinef shows he couldn't have more than just glanced at what I had to say and the complete dismissal of something I thought important just pisses me off to no end. I know my **** body, I know how to tell when something is helping me or not helping me. The stuff he has me on isn't helping, the caffeine is, and I want to know WHY.

How should I handle this? I obviously need better help than I'm getting (when I saw this guy five years ago he put me on the same treatment regime I'm on now, and just like then I didn't get better. The only difference now is that I actually know a little about POTS, enough to know that there's more out there to try than just beta blocker/florinef). I have no idea how to find better help, but I have no idea how to make this guy listen either. I want to send back a less than friendly email demanding answers, but know from past experiences that doctors just get obstinate if you don't accept their word as gospel. Also, know I need to cool down a bit before I sent a reply of any sort.

Advice, please? I can't keep going on the way I am.

[MamaTrain]

Kexia,

This is what I have to tell myself when I get frustrated with my medical care. The doctors are experts in medicine...I am an expert on my body! I have to live in it everyday they dont. Definitely calm down before you reply. If the caffeine makes you feel better than figure out what works for you. I do believe that caffeine is actually a diuretic so maybe that's why he doesnt want you to drink it. There are herbal remedies that give you the same effect but might be a better choice.

Keep your chin up and your temper down...it's so bad for you!

KC

[Chaos]

Well said TrainBoysMomRocks! I'd even stipulate it even farther. SOME doctors are experts in SOME areas of medicine, but NOBODY else but you is an expert in YOUR body. This is one of my arguments against the huge push for only using "evidence based treatments". While I certainly am supportive of research and starting with an evidence based treatment, these are all based on "averages'. Well what does that do to those of us who are "outliers"? Yeah, based on evidence in a research lab, caffeine might not be the best thing, but based on the evidence in your own body's lab, it seems to help. So which lab results do you listen to???

Personally I think having a doctor who listens to you is probably the most critical thing. Even when they don't have all the answers, if they're at least willing to listen and consider what you're saying, I think it helps tremendously with your outcomes. If your doctor is usually someone like that, then I'd think maybe give him a second chance. Having worked in healthcare for 30 years I can see how you got the response you did. They're crazy busy and trying their best but with the work load that they have and all the ridiculous levels of paperwork etc, they do tend to rush thru things and even really good docs can have bad days. It doesn't excuse his response or make it feel any better when you get that type of a response, but I can see how it happens. If on the other hand, he's not usually very supportive and this is fairly typical of the way he works, I'd start looking for another provider.

Sorry you're having such a tough day! I can hear your blood pressure all the way down here in NM.

[potsgirl]

I can't get by without my one cup of coffee in the morning. It keeps me sane.

[scarfgirl]

@KC: what herbal remedies are you referring to?

I'm going to continue using caffeine, right now I'm drinking a cup every other day (really don't want to get addicted since that'll cancel out any benefits). How can I respond to this email in a way that will get the doctor to understand that this is important to me? It's got to be significant that caffeine gives me such a huge boost, and I don't won't him to write me off just b/c I'm not improving like he thought I would. It seems like doctors are great at listening and understanding....for about 3 visits. If you're still a mystery after that, it's because you're difficult.

Also, if anyone has suggestions as to safer/more effective alternatives to caffeine or a way I can ingest it semi-regularly without forming a habit, please let me know!

[Guest tearose]

Not only do I hear you, I too feel your bp rising as you share!

I have been down the path studying and removing caffeine and here is what I learned. By having two cups of coffee in the morning OR using caffeine tablet cut in half, I safely and slowly raise my blood pressure. I MUST increase my bp or I just can't manage to even shower and dress in the morning. I can not use any drugs so I need the caffeine. I did not find licorice a predictable herb; it was not raising my bp. I intentionally drank my coffee, and asked my PCP to record my heartrate. It clearly comes DOWN in rate as my bp increases from the caffeine.

The only danger in using coffee, and it is very serious and severe is if you become tolerant and start to take in more. I DID go down this path and was very sick when I came off it. It is a drug for us and we need to use it as a tool. I will come off it every few weeks to be sure I am not developing a tolerance again. I use two spoons of coffee to 8 cups of water. It is a weak brew that both hydrates me and gets my bp up so I can function. I "titrate" the dose so to speak.

Only unenlightened doctors will assume you are either raising your heartrate or becoming dehydrated. This is wrong and you can prove it too! Take and document your bp upon rising and then again after your slow dose of coffee. If you feel better and can function better by careful use of caffeine, than stick to your own intuition.

tearose

[MightyMouse]

Dr. Grubb explicitly told me to take my 1 florinef tablet WITH my morning cup of coffee. Coffee has helped me all along and he saw no reason to start. Some doctors instantly jump to the "avoid caffeine" statement because of the erroneous assumption that b/c you sometimes get a fast heart rate that coffee would make it worse... actually, for many of us, stimulants help. For those who are sensitive, however, they may have to avoid it. I only take drink one cup of coffee--and sometimes I do have some green tea later in the day, but very infrequently. For most folks, anything in moderation is okay.

You do deserve a plain language explanation about why.

[summer]

Like Tearose, I also drink very weak coffee in the morning for hydration and to boost my BP. Also, as Tearose said, it actually slows my HR by raising my BP and makes me feel a lot better. It brings my BP up by 10-15 mmHg. I also was advised to stop drinking it because it might increase my HR. This is not the case for me.

Summer

[MamaTrain]

@KC: what herbal remedies are you referring to?

Kexia,

I have heard that the siberian ginseng is good. I know there are others but when I try to think of them I just cant remember! Story of my life these days! Sorry!

KC

[ddschool]

Kexia,

I feel your pain! For a long time, docs didn't take me seriously about how I feel and my symptoms (like I can make up a low BP or low HR?!) THEN, they would give me my test results and I would catch them lying to me! (I am a nurse and I get copies of all my tests/reports) - It is so frustrating and disheartening .... I work evening shift, I told my doc that I had to drink a Pepsi at 9pm just so I could drive home at 11pm - He thought I was joking at first, and I told him I wasn't - I had to do what I had to do to make it home after working 12 hours - He told me that I might need to take a 4th, smaller dose of my Midodrine, or look at changing my Concerta to Ritalin (which we didn't) .....

Keep your chin up, stick to your guns, don't let anyone run over you b/c I have learned if you don't stick for yourself, no one else will - Like everyone else said, you know your body better than anyone else ....

Good luck ....

[scarfgirl]

Hmm.....I think I'm gonna drink a cup every day and see what happens.

I have noticed my stress levels are higher when I've had caffeine. I don't know if the caffeine itself is triggering some sort of response, or if I'm just finally awake enough to feel 'stressed'. It's not a pleasant side effect, but worth dealing with to gain some acumen.

[erik]

It's definitely a plus for a condition to have at least some physical signs for a doc to latch on to. But then it seems it can backfire too, since then they might make false assumption that those are the full extent of the condition. Certainly not the case. Not sure what can get around that if a doc just isn't getting it. After some patience and simple explanation of that fact, if a doc isn't coming around it may come down to moving on to another (or adding a different one such as a different specialist if one is getting some benefit from the original).

Here're some of my opinions, for what they're worth: Taking a full few months off caffeine was very wise (and dove tails with frequent-small-meal's metabolic management). I've done the same myself (repeatedly). Probably a couple months of abstinence is enough to get a solid feel for how it is/was working for you overall. If you're like me, it's a mixed plus/minus drug (like most, eh) but wise intermittent & moderate use can bring overall benefit.

This isn't likely beyond what you've already thought or done, but perhaps emphasize the "wise & moderate" or even "intermittent use" and acknowledge it's "mixed" nature to the doc. You can point out that you're appreciative of his abstinence advice, acknowledge that it is the general starting recommendation, but point out that dysautonomia experts do acknowledge that some patients find caffeine to benefit overall nonetheless. You are simply one of those patients. Perhaps consider/offer to abstain & reassess occasionally in the more distant future since the body & other treatments can change over time (remind him that you are being reasonable, and implicitly invite him to be so as well). Perhaps mention that caffeine is not unlike other drugs used to treat dysautonomias such as midodrine, which despite being mildly "stimulating" can sometimes end up "paradoxically" avoiding the body's over-stimulation (which is worse).

Or just keep it short & sweat: Politely ask if he can recommend a better alternative than caffeine for addressing your persisting symptoms (and make simple mention of those, and repeat your thanks for the improvement in others). Put the ball gently in his court.

[yogini]

You have to figure out what's right for you. I personally feel comfortable doing stuff on my own without checking with my dr - something like caffeine isn't a prescription and if it makes you feel better, just go for it! Honestly you may not even want to bother explaining to him. Especally because so many of us use caffeine and it's in all of hte literature too! If you couldn't tolerate it, you would know by now. I've gone back and forth with caffeine - cutting it out and using it. For me it also works best in moderation. in the morning so it is out of my system when I try to sleep.

Like the others said, your doctor may not fully understand POTS. You have to think about whether this is the best doc in your area (which, given the docs out there, he may be!) or whether there is somoene more knowledgeable around. If you stick with him, keep doing your own research and checking things that don't sound right.

If you do want to explain, rather than an email make an appointment in person. He may have said something to his receptionist without thinking too much about it. It's sad but true tht he will be more focused on you when he is getting paid for it. You could print out some stuff from Dinet which says caffeine is helpful to some POTS patients.

[Crow]

I used to smoke 1 cigarette in the morning with my coffee. That's it for smoking all day. Made me feel so much better haha. Vasoconstrictor.