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Disappointing Appointment With Cardiologist - Looking For Advice


bren22
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The first few times I saw my cardiologist he seemed very supportive. He told me that it would take time to find the right meds and the right dosages. I had a positive TTT and then he put me on midodrine, florinef and bis-propolol. It was a very difficult 6 months. I felt worse. I find that if my bp increases, I have more chest/throat tightness/pain, shortness of breath, tremor in left hand... He kept tell me via email to continue on with the meds. To give it a chance. So, I finally had my follow-up appointment and I couldn't believe it. I feel side swipped by him. He said that based on my reaction to the drugs, he doesn't think that my dysautonomia is causing most of my symptoms. I have CFS/Fibromyalgia in addition to dysautonomia. Now he thinks that I only have minor dysautonomia and that 99% of people would have responded to the meds he gave me. So I should stop midodrine and florinef and that is it. I pushed to see if there were other alternatives and he finally said that I could try mestronin but that I would have to be followed quite closely and he would refer me to a collegue in my hometown. What happened to it takes time? What happened to finding the right combination? Has anyone else experienced this? When you come off midodrine and florinef, how long does it take for the effects of the meds to dissipate? My bp is still slightly higher than my normal levels, which are quite low, but at which I feel more comfortable. Has any one noticed that their symptoms are more severe when they extend themselves? I am so tired. I feel abandoned by my doctor. I wonder whether it is worth treating. I am so sensitive to everything.

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I have been diagnosed with : Pure Autonomic Failure, Orthostatic Hypotention, Neurally Mediated Hypotension, Parkinson's, and Multiple System Atrophy.

At the moment I am taking only Midodrine and this was after seeing a Neurologist of Movement Disorders.

I'm going to seek a second opinion and if the MSA is confirmed, I hope that I won't have to take a lot of other meds. I'm managing fairly well now but if I miss a dose and have to take it an hour later than I should, I'm zonked. Also, if I overdo something, the resulting fatigue is terrible.

It's easy to overdo it, even just a 15 minute very slow walk.

Mary p

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Hi, I'm not sure if you have already stopped taking all the meds or are thinking about it before making a decision? They have different lengths of action: midodrine stops working in a few hours (that is why it is taken frequently through the day), bisoprolol would probably take a couple of days to wear off totally, florinef works very slowly and I think it takes 6-8 weeks to stop having an effect.

Do you have a supportive PCP that you can talk to about the meds? Often doctors advise to start or stop just one med at a time so that you can tell if things have got better, worse or not changed. You may find that one med helps and another makes you worse but it is difficult to tell when several things change at once.

Hope you find a helpful doctor, you are right it takes time and effort to find the right combination of meds for dysautonomia - don't be put off that the first combo isn't the right one for you!

Flop

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So sorry hun that your Doctor did a Jekle and Hyde on you! It's sometimes very hard for "specialists" to see their theory not pan out and indeed rather than seeing that their first choice didn't work they decide that the DRUGS worked but it was YOU that didn't. Thus you don't have POTS. Well that's simply nonsense. My cardiologist actually DIDN'T want me to go back on Flurenef or any of the standard POTS drugs right now because he felt they'd make my chronic fatigue syndrome worse. It's a pitty not having something else to try at the moment ... but I much prefer a Doc that says "I don't know what to do" than one that seems to have all the "answers".

Good luck finding the right support system to help you move forward.

~EM

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I've been dumped by doctors for being too complicated too. It stinks. I think Flop is right. I would have started, and would stop any med one at a time, slowly, so you can sort out what's triggering what. As I. like many dysaut people, am very sensitive to meds, I start each one a a teeny dose--often way below what would be considered therapeutic, and then slowly build. And I do this one at a time. Midodrine 2.5 was initially helpful, but I needed to go up, again slowly. I can tolerate up to 6.25. I then needed something more continuous, as midodrine is so short-acting, and I was still so symptomatic. so we added florinef, at .05. That wasn't enough, so .075. And If I change anything, it will be one drug at a time.

I'm reaaly sorry the doc gave up on you. I think some docs don't have the patience for people thay can't quickly, magically fix. So they send us away. The decent thing to do would be to refer you to someone more expert. But you may have to do that on your own or through your pcp.

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Sorry about your experience. I am not quite sure what he meant when he said you would have to be followed very closely with mestinon. I was prescribed Mestinon by Mayo Clinic in Rochester. My doctor in Maryland followed me but no more closely than she would have with other meds. I don't think Mestinon is a dangerous drug in comparison to others. It, too, is pretty fast acting.

Did you say you wanted to give Mestinon a try? Mestinon is among the arsenal of drugs for POTS. I think you need to be firm and positive when you speak with your doctor. Sometimes I think the doc gets turned off if the patient is not willing to try different things.

The next time you go to doctor for treatment of POTS you might think about taking the section of the DINET page that lists the various drugs that have been used to treat POTS. There is no magic cocktail as you surely know. You really need to have a doctor willing to take the time to explore the various possibilities.

Lois

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is it possible that you would've done better on only one, or two of the meds you were taking? are you and your doctor sure that you were reacting badly to all three? what about trying a lower dosage of one, or two of them?

I wish that I had started one at a time and at a lower dose. After 6 months, the doctor told me that he had started me on a significant dose. What was he thinking? Had I known I would have suggested titrating up to the max dose and seeing how I reacted. I am now only on bis-propolol. My bp has not come back down and I am still experiencing high heart rate and pounding heart even at lower heart rates. I am very confused.

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Sorry about your experience. I am not quite sure what he meant when he said you would have to be followed very closely with mestinon. I was prescribed Mestinon by Mayo Clinic in Rochester. My doctor in Maryland followed me but no more closely than she would have with other meds. I don't think Mestinon is a dangerous drug in comparison to others. It, too, is pretty fast acting.

Did you say you wanted to give Mestinon a try? Mestinon is among the arsenal of drugs for POTS. I think you need to be firm and positive when you speak with your doctor. Sometimes I think the doc gets turned off if the patient is not willing to try different things.

The next time you go to doctor for treatment of POTS you might think about taking the section of the DINET page that lists the various drugs that have been used to treat POTS. There is no magic cocktail as you surely know. You really need to have a doctor willing to take the time to explore the various possibilities.

Lois

I had to push in order to get the prescription for Mestinon. He basically said that 99% of the people would have responded to the 3 meds he have me so apparently POTS was not significantly affecting my symptoms. He wanted to leave me just on bis-propolol and that was it. I asked about other meds as this forum has given me the idea that there are many different combinations to try. It is ironic as when I started to see this doctor, he said that treatment takes time and adjustments to meds would have to be made. I am not big into drugs based on my reactions but I think I have been open to the concept as I am desperate to get even a little improvement. What has been your experience with Mestinon? Can you direct me to the section on the DINET page with the drug possibility?

I want to thank you and everyone that responded to me post. It is great to get support from people who understand where I am coming from.

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Sara has had similar doctor encounters. After her surgery for the Chiari Malformation, she continued to have problems for which we returned to the neurosurgeon who did her surgery. Well, since he had already "done his thing" there was obviously nothing else wrong with her, so she just needed to get lots of exercise!!!! The feeling he gave us was " I am perfect, so it must be your fault if you are still having problems, now go away and leave me alone". Another doctor saw her one time and sent her a letter saying he would not see her any more so to find a new doctor. After much insistance, I got the office manager to pull Sara's chart to see what his comments were after her first visit, he put in her chart that " I have nothing to offer her". Evidently, her case was too complicated for him. So, there are lots of JERK doctors out there. Hope you find one with more understanding.. Best of luck to you... Susan

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It's just too bad that some docs can't just say, "Look what you need is beyond what I am able to offer. But you deserve to know what the best treatments are. I can help refer you to someone who may be better able to help.." Instead of making you feel dumped and like a bad patient because you don't fit in the standard boxes.

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It's just too bad that some docs can't just say, "Look what you need is beyond what I am able to offer. But you deserve to know what the best treatments are. I can help refer you to someone who may be better able to help.." Instead of making you feel dumped and like a bad patient because you don't fit in the standard boxes.

Amen to that !!!!!

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