Frustrated- dissappointing Dr. apointment

Hi All,

So the headaches have been bad, but so has the fainting lately. I can no longer walk upstairs safely- I have to crawl or slide down due to the fact that I have probably fallen down our stairs about 5 times in the last month. Thank goodness they are carpeted.

I saw my dysautonomia/NCS cardiologist on Thursday. The appointment did not go well at all. Here is a run down of what happened.
The doctor came in and I explained what was going on- mainly concerns with fainting a little more, the fact that, despite doing everything I can I am still fainting- mainly excercise, fluids, medication.
She then said, "well, I am not sure it is blood pressure, because you are not out long and you only have a few seconds of warning before you faint. also, right now, after doing an orthostatic bp for 3O sec, your bp didn't drop enough. Plus, florinef only works for a few days."
I asked if we could try something else. "She said I am open to suggestions"
I told her that all the meds helped for a bit, then stopped, even with rotating them.

Well, then she said, maybe it is something else. The choices are MS (Doesn't present this way}, Myasthenia Gravis, Seizure, and Conversion disorder.
She immediately started asking if "everything was alraight at home." "I said yes, in fact I am doing a lot more than I have been doing- volunteering some, going out more with friends etc." she said, "well, with some young people in your age, I send thm to a neuropsychiatrist and it turns out to be conversion (Psychogenic} and they are fine." I told her that I would be happy to see a psychiatrist, but that I had been over this with several doctors, including my psychologist who has been working with me for five years and has found nothing that suggests conversion. I also got pretty upset aat this possibility and a few tears came down, even though I was trying so hard not to cry. I finally asked if my mother could come back and if the doctor would be willing to talk to both of us. I wanted MOm to hear all the choices as well.

When Mom came back- she went over the whole thing again. The dr also said "well, she is probably depressed because she got a little teary when i mentioned conversion disorder." I said, "No. I am frustrated, they are two different things." She said your depressed. Even Mom said no to that. Both of us said we would be glad to see a psychiatrist to rule stuff out. Mom even said, I've tried to make it out as conversion disorder, but it isn;t one." so again, what do we do. "She said that seizures were one possibility and that we shoould do an ambulatory EEG" I am fine with this. I did ask her to write a note asking for it to give to my neuro. She said, why, i can't order it. I said, "We aren't asking you too, just to write something down on a prescription pad so my neuro will do it."

I asked about heart stuff and she said, well, maybe. I am going to get the info from the reveal, heart monitor transferred to a local cardiologist who could look at it and say if there was something wrong.

So we are going to try another beta blocker- zebeta and see if that helps as well as ritalin. I will see the neuropsych to rule out conversion disorder. and we are back to seizures.

I am beyond frustrated. I mean, here is another dr trying to tell me this is all in my head. It isn't. I started fainting shortly after the flu, which is one common presentation of dysautonomia.

I don't know what to do or think anymore. It seems like there are no good answers. Meanwhile, I am crawling upstairs like a toddler. I hate this.

My head is also really bad right now. I woke up at 4 am due to pain. T3 and klonopin are helping some, but not enough. IV scheduled for Tuesday.

Sorry for the long vent. I just know that y'all will understand.

Pain free days,
sailingm

As an individual who was called uncooperative by his PCP and referred to a psychologist by a chronic pain pharmD, I understand the frustration that you are feeling. The psychologist, after a few minutes, asked why was I referred to him, I seemed OK, aside from the chronic headache. I have since then changed PCPs.

I believe quite a few of us, migraineurs have been referred to psychologists for our chronic pain.

As to going up and down the stairs, is it possible to install a chair lift on the stair case? That would really be a boost for your self esteem.

Martin

Sailing Muffin,

I am really sorry for the disappointing doctor's appointment.

I have chronic daily migraines, and have been referred to a mental health professional, too. It is terribly frustrating not only to live with the pain but also to have doctors look at you sideways. I have always said that if I had a broken leg and walked into a room with a cast, everyone would say *oh* and understand. Invisible illness is so difficult for all.

I'm sending up prayers for you, that you will find a doctor that can help you. I think they are out there, but I am still looking, too.

Take care...Ann

I don't have any advice, but I wanted to send my support and care your way.

I really wish we had a hugging smilie, since it seems perfect for what I want to send, so (((((HUGS)))))

I can imagine how hugely frustrated you must feel. We had neuros who did that to my son too - when the medicine they tried didn't work, they immediately started saying he needed a psychologist review, etc. We did see a psychologist and of course he found no problem. It does make you feel like crying because you are so frustrated that you can't even believe it. I can sympathize with you, SM. I just think that is their standard thing to do when what they are trying doesn't work. Very sad. I am praying you can find some answers.

I suspect she doesn't have any clue what's causing the fainting, which is why she suggested you're bringing it on yourself. Can you see someone else for these conditions? I'd definitely be looking for a different doctor if one of mine said those things to me. It seems like she was really condescending and dismissive.

SM hang in there! They always bring up the psychiatrist when they dont know what is wrong. The problem is the doctor, not you. I would look for another doctor. (And maybe a bedroom on the first floor so you don't have to risk the stairs).

Dear sailingmuffin

I don't know if I have anything useful here to say, but wanted to let you know I can relate to this and offer you support.

Having suffered post viral depression after an illness when I was much younger I can see where they are going with their theory, but my experience of counselling for it came to the conclusion that it was a natural response to the ilness and would pass once my body had recovered fully.

In retrospect I would not be acepting it as the only treatment without having had full blood tests done to double check the basics before relying on heavy medications.

I hope you get some relief from this soon.

best wishes

Di

by the way I have done my fair share of falling down stairs. It is getting easier.

SM,

I also wanted to send my support to you. I have gotten tears in my eyes many times just discussing my migraines and it does not mean I am depressed. You are at a new doctor and hopeing they can find whats wrong and it seems normal to me to be frustrated to cry.

I also agree with the above posters on the doctor does not know what is wrong so lets just say it is all in your head.

Question: Have you been looking into a service dog still? I think in many ways this dog could help you. Dogs in themselves are wonderful companions.

I hope you find some answers soon.

Sending prayers your way

kimsmom

oh, sailing, most of us can relate to your horrid doctor appointment. everyone else has said what i'm thinking; the doc has run out of ideas. there IS a physical condition causing these symptoms, she just can't pin it down.

it's unbelievable, really, that she didn't refer you to a colleague. the more brainpower working on something so complex as your situation, the better.

you will find someone to help. just read cheryl's posts (anna's mom) and hopefully you will be encouraged to keep trying new approaches. as you know, that family has been all over the country to the best and the brightest, and sometimes clues are obtained.

thinking about you and sending hugs, dianne

I have an internet friend who is a pharmacist (though right now she is a stay-at-home mom). She is married to a pharmacist.

She has a severe case of POTS. She has been around the country, being treated by some of the best POTS specialists.

Sailing Muffin suffers from something similar.

This pharmacist says it is so disappointing to personally experience such a poor response to medications used to treat POTS. Medications she used to dispense when she was a pharmacist. But they do very little to help HER, with this specific condition.

As Marc has said many times here, treating POTS and related conditions can be very difficult. Even if you find a good doctor, he or she may not have any solutions.

I wish doctors would just be honest and say some conditions are very poorly understood and have poor treatments. Don't put the blame on the patients by suggesting they have psychological problems if they don't get better. Medicine has its limits.

Cheryl

And thank you, Dianne, for the kind words. We keep trying!!!

Cheryl

Hi all,

Thanks so much for your replies and support.

I am sure that she has run out of ideas because the medicine isn't working as well and she is frustrated, therefore it could be a conversion disorder. I don't think it is- neither do my parents, or my psychologist. However, in order to completely rule it out, I will see a neuropsychiatrist. This way- it would be completely ruled out. I have had several psychiatric evaluations for headache and all said I was normal.

I will also go ahead with the ambulatory EEG- which my neuro can do to rule out seizure.

I am also going to find someone here who can deal with the reveal-implanted holter monitor- as we can't get the information from Toledo. So that means dealing with another cardiologist who can then send it to an EP.

Yes, I am still looking into service dogs. I sent one application out last week. I hope to get the other one done this week- but I have to get my doctor to sign off on it. I will probably have my neuro or internist sign off as both have seen it and know me and think it is a good idea.

Don't worry, I am not giving up. We have been everywhere for this disorder- Mayo-Jacksonville, UAB, Toledo, Vanderbilt, not to mention the local doctors. The next stop may be Hopkins.

It is just frustrating because you are stuck with the "well, how do I live with this and what do I do thing" The only answer is to keep living.

I think it has to be heart related or damage to the autonomic nerve caused by a severe viral infection.

I have an IV of Depakan scheduled for tomorrow and hopefully that will at least help the headache.

Thanks so much for all the help and kind words.

Pain free days,
sailingm

sailingmuffin wrote:Hi All,

So the headaches have been bad, but so has the fainting lately. I can no longer walk upstairs safely- I have to crawl or slide down due to the fact that I have probably fallen down our stairs about 5 times in the last month. Thank goodness they are carpeted.

I saw my dysautonomia/NCS cardiologist on Thursday. The appointment did not go well at all. Here is a run down of what happened.
The doctor came in and I explained what was going on- mainly concerns with fainting a little more, the fact that, despite doing everything I can I am still fainting- mainly excercise, fluids, medication.
She then said, "well, I am not sure it is blood pressure, because you are not out long and you only have a few seconds of warning before you faint. also, right now, after doing an orthostatic bp for 3O sec, your bp didn't drop enough. Plus, florinef only works for a few days."
I asked if we could try something else. "She said I am open to suggestions"
I told her that all the meds helped for a bit, then stopped, even with rotating them.

Well, then she said, maybe it is something else. The choices are MS (Doesn't present this way}, Myasthenia Gravis, Seizure, and Conversion disorder.
She immediately started asking if "everything was alraight at home." "I said yes, in fact I am doing a lot more than I have been doing- volunteering some, going out more with friends etc." she said, "well, with some young people in your age, I send thm to a neuropsychiatrist and it turns out to be conversion (Psychogenic} and they are fine." I told her that I would be happy to see a psychiatrist, but that I had been over this with several doctors, including my psychologist who has been working with me for five years and has found nothing that suggests conversion. I also got pretty upset aat this possibility and a few tears came down, even though I was trying so hard not to cry. I finally asked if my mother could come back and if the doctor would be willing to talk to both of us. I wanted MOm to hear all the choices as well.

When Mom came back- she went over the whole thing again. The dr also said "well, she is probably depressed because she got a little teary when i mentioned conversion disorder." I said, "No. I am frustrated, they are two different things." She said your depressed. Even Mom said no to that. Both of us said we would be glad to see a psychiatrist to rule stuff out. Mom even said, I've tried to make it out as conversion disorder, but it isn;t one." so again, what do we do. "She said that seizures were one possibility and that we shoould do an ambulatory EEG" I am fine with this. I did ask her to write a note asking for it to give to my neuro. She said, why, i can't order it. I said, "We aren't asking you too, just to write something down on a prescription pad so my neuro will do it."

I asked about heart stuff and she said, well, maybe. I am going to get the info from the reveal, heart monitor transferred to a local cardiologist who could look at it and say if there was something wrong.

So we are going to try another beta blocker- zebeta and see if that helps as well as ritalin. I will see the neuropsych to rule out conversion disorder. and we are back to seizures.

I am beyond frustrated. I mean, here is another dr trying to tell me this is all in my head. It isn't. I started fainting shortly after the flu, which is one common presentation of dysautonomia.

I don't know what to do or think anymore. It seems like there are no good answers. Meanwhile, I am crawling upstairs like a toddler. I hate this.

My head is also really bad right now. I woke up at 4 am due to pain. T3 and klonopin are helping some, but not enough. IV scheduled for Tuesday.

Sorry for the long vent. I just know that y'all will understand.

Pain free days,
sailingm

Thanks you for the post.
Hi guys, Im a newbie. Nice to join this forum.



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Hope you've cheered up a bit Sailing.

Totally with you on the frustration. My doctors latest reply was:

"Lot's of people have headaches, they just put up with it."

"Argggghhhhhhhhhhhhhhhhhhhhhhhh!!!"

Hi, Sailing. Just wanted to say I hope you are feeling better after your IV treatment.
Hugs,
Cindy

Hi All,

Thanks again for the kind words and support. I'm not sure what I'd do without y'all.

Here is a brief update on how things are going:

- The IV of Depakan did help. Unfortunately, it was one of those times where the pain has been so high for so long that it didn't knock it down as much as I would like. The last time this happened a course of decadron helped, so I will try that. I have also found that Mobic, an anti-inflamatory helps some when it is like this. I would say the pain was a 1O when I had the IV and the meds knocked it down to a solid 9. If I can get it to an 8, I should be good for a while. But 9 is better than 1O.

-I finally managed to get in touch with Dr. Grubb's office- he is the one who put the reveal-implanted heart monitor in. I asked what it showed and was simply told "normal sinus tachycardia"- as these were sent in when I faintined, I think tachycardia is part of this, but I don't think it is normal.

-We finally found a local cardiologist who deals with the reveal, is an EP, and can take me. It will be good just to get the information from the device and find out more about what we can do or what the next step should be.

-Ritalin does help, my cardiologist suggested I try it again, but forgot to write a script for it. so I have contacted her office. should hear back on Friday.

She also wants me try a beta-blocker, Zebeta, which I am kind of scared of as I haven't had good luck with them. Inderal made my bp drop. Corgard sent me into a medication induced depression as did Bystolic. But I will give it one more try.

So I guess sheer persistence sometimes pays off. I had a good day yesterday and I hope today will be a good day as well. The only thing I can do is take it one day at a time, and tackle it one problem at a time.

Again, thanks for the help and support.

Pain free days,
saaiingm

SM...I am not here as often as I used to be. So when I checked in I was so sorry to read your post and hear about your frustrating appointment. I am so sorry. I always wish I could offer you new information and new ideas to try.

Just know I don't forget you and support you through your trials and pain,

You know, I had to ring in on the psychologist thing. Part of the treatment in Ann Arbor is seeing a Psychologist at EVERY appointment. When they could not 'cure' me after in-patient and out-patient treatment, then it was a psychological thing. I was simply causing the pain myself, or making it up or I don't even understand what the point to all that is! Unfortunately, at that time I was frustrated, and young and for just a minute thought I was going insane and maybe somehow I WAS causing it! Then I came to my senses and realized that they were just out of ideas and couldn't 'cure' me.

I believe that there is a big difference between being depressed and depression. EVERY ONE gets down and depressed from time to time. That is a part of life. I would be worried if someone didn't! Depression is something that affects you most of, if not all the time. It is something that a bowl of ice cream and a laugh or two can't touch. When you are at your wits end and seeking help, yeah, you are going to lose yourself, break down and cry. Sometimes that good cry helps, if not anything else to release the tension. Doing that doesn't automatically mean you are depressed. More like normal.

One of the tests I have gone through with these migraines is the testing for POTS, which I don't have. My BP medication that I took at the time was too high a dose for me and caused dizzy spells, and black outs in my vision. I though I was going to faint a few times, but never did.

Hi All,

I know I have said this before, but I have no clue how I would get through all of this without the kind words, support and help I find here at Rhonda's! Thank you.

I tried the Ritalin. It helped for the first few days, then it stopped helping and just made me mean- I thought I was bad when I was little and coming off dexedrine (I Had ADD in school} but ritalin was worse. This is the same thing it happened the first time I tried it.

As to the whole psychological aspect, I think the doctor didn't know what else ot do, so now it is "psychological". I spoke to my psychologist about the whole thing, including the conversion disorder part. He basically said that he did not think that was it. I have been seeing him for about four years now, and I really trust him. I will go with his thoughts on that. I will probably still see the psychiatrist at some point, just so we can rule it out completely. I was treated at MHNI- inpatient- and had to deal with the psychologist there and one suggested the same thing, until they did a nerve block and my headache went from being an 8, to a 1-2 in about an hour.

I think that migraines and POTS are hard to treat. You can't look at an x-ray or a blood test. The same treatment doesn't work for everyone and some patients are more difficult to treat than others. It frustrates both the patient and the doctor. Unfortunatey, the cardio, took that frustration out on me. My parents tell me this isn't uncommon, but they always tried not to yell at the patient when they were stumped.

I am going to get in touch with the local cardio this week.

Now, if only I can gather enough energy to go to church this morning.

Pain free days,
sailingm

That is very funny! The Psychologist I was talking about in my last Post was also from MHNI. Hmmm...makes you wonder!!!