Disappointing Doctor's Visit

[kholdefer]

Hi everybody,

Well I went to the doctor last Tuesday for worsening POTS symptoms, bad headaches, numbness and tingling in my knee and my arm going dead. I was in really poor shape and scared to go to the doctor, but was bolstered up by all of you, and I did imagine all of you in the office with me. Prior to the visit they doubled my midodrine (proamatine), so I was able to get up and around more. For one of the first times I was really firm and confident (well, as confident as you can be when you're exhausted). And its a good thing too, because otherwise I would have gotten even more ran over than I was.

It was a terrible visit. My doctor implied first off that maybe I was partying, which is like, the most hilarious thing in the world to me, because I can barely go to the grocery store. I think because I look young, even though I'm 24, he treats me like a teenager. I told him I absolutely wasn't, and he looked at me with a little grin, like he didn't believe me. He then wanted to know if I quit doing my exercises, which I did on the days when I couldn't walk, and he thought that was the cause of my worsening symptoms, which made me so mad because any day I physically can exercise, I do. Then he wanted to know what time I got up in the morning. I told him at 8 or 9 and he laughed and said, "well, if I slept in that late, I couldn't sleep at night either." Hello, I get up three or four times to pee in the middle of the night and then have a terrible time falling back asleep because of the adrenaline it takes to get myself up. He then told me that POTS patients don't have relapses, and I must be doing something wrong or not working hard enough because I'm not getting progressively better as 80% of people with POTS do. He checked my blood pressure and pulse in each position and said they were looking okay, so I must be fine. The thing is that he only had me stand for one minute. Everything I read, and what he told me when he diagnosed me is that sometimes it takes up to ten minutes for symptoms to show.

So I left the doctor's office with a terrible rash of hives all over my chest, which is what happens when I get really upset. What do you guys think of what he says about POTS patients not having relapses? Do you think that this doctor has taken me as far as he can? How does one go about getting another doctor? The thing is, I have been working really hard, treating my POTS has been my life for the last two years. I can't work; when I tell the doctor that he acts like I should be able to. I don't think he takes me or POTS very seriously. I don't know what to do.

Thanks for listening

Kady

Just a quick add-on question. I have been having the most horrific three day long headaches that I never used to have. Does anybody else experience this, and what helps?

[taylortotmom]

I'm sorry you are having such a hard time getting help from your doctor. My best advice is to keep looking until you find a doctor knowledgable about dysautonomia and the fact YES we have relapses. As far as the headache, it could be from a number of reasons (dehydration, bp fluctuations, etc.) I hate to sound redundant but, it sounds like just about any doctor would give you better care than what you are receiving. Good luck!

Carmen

[jenwclark]

I'm with Carmen. It does sound like time for a new doctor. There's a list of patient recommended POTS docs somewhere on the DINET website. Have you looked at that to see whether there's anybody in your area?

You are the expert on your own body, and the best doctors respect that expertise. I have tried to work with doctors who told me I just needed more exercise, or to get up earlier, or to get out of the house more, etc., and not only did they fail to help me, but their "advice" pushed me into paralysing feelings of helplessness and depression. You've been fighting this for two years already, which is a testament to your strength. Have faith in yourself.

spike

[Guest sonotech]

Kady,

I am so sorry you have to deal with a doctor like that. It really sounds like you need to find another doctor and "move on". You need an Electrophysiology Cardiologist, a Neurologist familiar with POTS, or AT LEAST a regular Cardiologist that knows about (or is willing to learn about) POTS!

Maybe call your insurance provider and get a list of docs, then call and ask them if they treat your condition. Sometimes it is "trial and error" with finding a good doc, but the one you have now is not doing you any good!

Of course lots of people have periods of improved symtoms and then relapses....everyone is different, but relapses DO happen. I know how you feel when you say you were accused of "partying"....my FIRST hospital admission due to severe tachycardia was TONS of DRUG TESTS! They didn't take me seriously until the tests all came back normal.

I also can't believe he thinks sleeping until 8 or 9 is LATE! He should see ME!!!! Many POTS patients also have CFS and that kind of fatigue can be impossible to handle sometimes. It doesn't matter HOW much you sleep, you may still be exhausted.

It is also possible that the increase in your Midodrine is causing your headaches.....that was a big problem for me and I had to stop taking it. I currently take Adderall.....and it helps ALOT more than the Midodrine and no headaches.

I wish you luck finding a new doc, and hope you start looking ASAP!

Take care

[bttrflyamby1981]

I agree with everyone else, it is definitely time to find another doctor. You have enough on your plate without dealing with that sort of care. I'm very sorry your visit went so poorly, don't give up though. I know it's difficult to find a good doctor sometimes, but I have my fingers crossed you won't have too much trouble.

Best of luck,

Amber

[MightyMouse]

Has the doc otherwise been good with you? Perhaps you need to schedule another appointment and tell him exactly what went wrong with this last visit...and inform him that he is incorrect about "not having relapses". Symptoms can wax and wane over years. Also, you might try addressing his "blame the patient for not trying hard enough to get better" attitude.

However, if his treatment for you overall has been spotty, then a new doc might be your best option right now.

Nina

[MomtoGiuliana]

DINET has created a pamphlet on POTS. Perhaps you can share it with him. Often doctors also respond favorably if you can provide them with a peer-reviewed, published article. There are some fairly recent, general articles on POTS. If you PM me, I will e-mail one to you.

His statements show that he does not have a grasp of the POTS basics.

If you can see a specialist, such as an electrophysiologist, that would probably be your best next step. However, depending on where you live, this may not be possible for you.

Take care,

Katherine

[Radha]

so sorry to hear about your terrible experience, its bad enough being sick with an unusual illness and then having an idiot of a doctor who makes you feel worse! i really hope you find someone with some compassion and understanding and never never doubt yourself, i have had my share of lousy doctors, hang in there, you deserve so much better, but i know it is not always easy to find a decent doctor, wish you all the best,

radha

[lthomas521]

Hm. Sounds like another case of narcissistic personality disorder. Not you, the doctor.

Here are the diagnostic criteria, according to the American Psychiatric Association:

A pervasive pattern of grandiosity (in fantasy or behavior), need for admiration, and lack of empathy, beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:

(1) has a grandiose sense of self-importance (e.g., exaggerates achievements and talents, expects to be recognized as superior without commensurate achievements)

(2) is preoccupied with fantasies of unlimited success, power, brilliance, beauty, or ideal love

(3) believes that he or she is "special" and unique and can only be understood by, or should associate with, other special or high-status people (or institutions)

(4) requires excessive admiration

(5) has a sense of entitlement, i.e., unreasonable expectations of especially favorable treatment or automatic compliance with his or her expectations

(6) is interpersonally exploitative, i.e., takes advantage of others to achieve his or her own ends

(7) lacks empathy: is unwilling to recognize or identify with the feelings and needs of others

(8) is often envious of others or believes that others are envious of him or her

(9) shows arrogant, haughty behaviors or attitudes

That doctor showed signs of at least four of the diagnostic criteria during a single office visit. Poor man, he's mentally ill! You need to find a sane doctor.

By the way, your headaches might be migraines. Ask the pharmacist if you can take magnesium glycinate. It really helps me.

[Tessa]

Hi Kady

Your experience explains many I had... And I agree with the others, it is time to look for another doctor and, if possible, one who knows about POTS.

Do not feel sad about your visit to the Doc. It is not your fault that he had no idea of what he was saying. You can feel frustrated because he was of no help but we cannot expect much from those who have no information about POTS... I hope you can find someone soon who can deal with your problem and help you.

When I have such kind of headaches, I have to rest in my bedroom, without noise and without light. I avoid eating too much and drink plenty of water with sugar and a little lemmon juice added to it and try to relax laying down and moving as less as possible.

I hope you are better by now.

Take care,

Tessa

[kholdefer]

Thank you all so much. I can't adequately express how much this place helps me. Both the practical advice, the support, and the humor (lthomas521), is invaluable. I just laughed for the first time in a few days reading that post. I am going to try to find a different doctor. I am going to show my ignorance; I have no idea what an electrophysiologist is, but I am going to try to find one. The headaches have subsided, but (this is wierd), my left eye is killing me. The last two days it feels so bruised when I move it, and by the end of the night my vision is all blurry out of it. Has anyone else experienced this?

Kady

[Tessa]

Yes, me

I always thought it was part of the headache as it stopped some hours after the headache was gone.

You will feel much better...

After the storm, the sun shines.

Take care,

Tessa