what do you do when your Dr. gives up?

[dizzygirl]

hello all

I am very upset this morning.. I recieved a message from my doctor today who was treating me for pots, and has treated me for the last yr.

He does not understand who I can do allright for a few days, and not have any tachycardia, then wake up with it out of the blue, and have trouble getting it under control again. And he said that he has had me on the tilt table twice, and I have not pass complete out.. mind you my HR goes very high, and i have BP issues on the tilt.. and become very pre-syncopal.. very close to passing out..

Anyone with knowledge of or who has dysautonomia.. is aware that everyday is different with pots, and that some days you will feel good and other days you will not..

Just because you are on the tilt doesnt mean that you automatically passout, though with alot of patients they do..

I am so debilitated right now from pots, i can barely function... now i have no doctor to treat my ANS problems.. and I was suppose to go see Dr. grubb in August, but they cancelled my appointment, and they cant tell me when they can reschedule me.. so i dont know what to do.

I am very intolerant to alot of the medications that we have tried.. or to sensitive to it.. allergic reactions..I have done everything that has been asked of me to do, I have been very cooperative, and willing to try anything to get better..

I was really counting on this appointment with Dr. grubb, in hopes to get some answers or direction of where to go with related ANS issues.. ,

I dont know where to turn or who to talk to.. I am so discouraged right now.. I just want to cry..sobb is more like it..

any suggestions would be appreciated!

dizzygirl

[PattiL]

Dizzygirl,

As far as your appt. with Dr. Grubb---Was this your first appt. with him? I don't know how long of a travel it is for you, but this might be worth it...Call back and speak with Sherry and get an appt. with Beverly, his new assistant. If you get an appt. with her on either Tues. or Thurs. I believe those are the days Dr. Grubb is there (ask). She will see you and then Dr. Grubb can stop in and briefly go over everything with you/her. It might help you. The same thing happened with us when we had a cancelled appt. with Grubb. It was too long of a wait to see just him, but we got in to see Beverly the week after I called. Hope this helps. Patti

[Ernie]

Hi Dizzygirl,

I am sorry that doctors are giving up on you. I get that myself also because I am just above their level of expertise.

A few weekd ago, in the same week, Monday I was told that it was all in my head, on Tuesday I was told that I am very very sick and need further testing and on Friday I was told that I was a desperate case and their is nothing else we can do for me. It was a real emotional rollercoaster.

My PCP has given up on me and he only agrees to do regular health care. He says I have to accept my condition and live with it.

So I found another PCP to help me find a specialist in Montreal. I am still looking but I have not given hope yet.

Ernie

[morgan617]

I am really sorry you are going through this. I am from the west and NO ONE understands it. The top cardio ablated me when it is the worse possible thing you can do. I have been rejected at Mayo, Vanderbilt, and NIH. So I do understand how you are feeling.

I go through very bad periods where I cry and swear and go crawl in a corner and wait to die. I am terrified everytime I go to a new doctor, because maybe there's one more psychiatric label that's going to get stuck on me. I feel my primary of 20 years has given up on me too.

But every morning I lie in bed and think of one good reason to get up and make it through another day. Screw them, if we were in paradise every person who thinks we are faking this would instantly get it and have to deal with it and family and friends and the health care field for 2 years. Even Karyn, who is a doctor, has had to deal with crummy co workers.

It's so much easier to call us names than help us. But as a doctor I saw last week told me, yes this is a very difficult and complex disease, BUT, that's no reason not to try and help people with it. Unfotunately I expect that the tests he does will be normal and then because he's a specialist, I won't see him anymore.

So then I will wake up every morning and find a reason to get up and get through the day.....I wish I could give you a better answer, but until people stop wanting only the easy way out, things will not change a whole lot for us. morgan

[dizzygirl]

Hi,

PattiL- hi.. no this is not my first appointment with Dr. grubb,i actually have been a patient of Dr. grubb for about 2 1/2 yrs. But my last 3 appts. have been cancelled..understandably so last winter when he him self was sick.. I am hoping that i dont have to wait another 6-7 months for an appointment. I did speak with sherry and she told me that she would call when they could reschedule me. I requested to speak directly with dr. grubb in the mean time.

Ernie- i can relate to what you are saying totally..last week my pcp told me that i was the worse case of pots that she has ever seen--how depressing! I hope that you find a doc soon.. I am not giving up hope... there is still hope with Dr. grubb.. even though he is so far away..now if he gives up on me I know i am in trouble! But i dont think that he will..good luck ernie!

morgan617-I am SO very sorry that you had an ablation.. I hear that that is likeone of the worse things you can have done when you have pots.. yikes!

I feel today like you said, i want to cry then dig a hole jump in it and die..sometimes when things are really bad for me like they are now.. I just want to give up and give into this..but my willpower is much stronger then my occasional thought of digging a hole!

thanks again so much for your support.. I can think of one good thing today... I am getting my scooter in 2 weeks ! YEAH!

[Jenn202]

I'm sorry that you got such bad treatment from your Dr.

I agree with Patti - Give Grubb's office a call... You can see his Nurse Practioner on the days Grubb is there .

Grubb told me to do this last time I w=saw him if I had an emergency and needed to see him sooner. Even though you see his practitioner, she consults with Grubb and he is involved in your care.

Then I would think it would be much easier for you to get a follow up with Grubb himself.

Dont give up just b/c one clueless Dr tells you he cant help you....

There are only a handful of caring Dr's out there who are willing to stick their necks out ...but if your persistent you will find them and get the help you need.

I send you lots of good wishes

[michiganjan]

Dizzygirl,

POTS symptoms can vary from day to day. Have you ever tried keeping a detailed diary of what you did and ate and drank and POTS symptoms? I do think that there are variables that may impact symptoms such as how hydrated or dehydrated we happen to be. Salt intake and amount of exercise or other stimulation may make a difference.

I hope you can find a good doctor that won't give up on you. However, several years my doctor gave up on me and there was no such thing as this forum or any doctors who treat people with dysautonomia. I was on my own and actually did make some improvments in my own health by monitoring myself closely and learning as much about my triggers as I could. I guess you could say that I defined my envelop (level of activity and what I need to eat and drink in order to stay clear of bad symptoms) and learned to live within it. This was not easy as I had to change my life and level of activity.

Keep on pushing to get the medical help you need and in the meantime do what you can to help yourself.

Michigan Jan

[MightyMouse]

I have two suggestions:

first, do call Dr. G's office--see his nurse practioner if you can't get an appointment with Dr. G soon enough.

second, you should think about finding another doctor--one who is more open minded, willing to read up on dysautonomia to understand that, in fact, what you are experiencing is quite NORMAL for this group of disorders. Additionally, passing out on the tilt is not the criterion for POTS...it's the change in HR and BP. Passing out is just an extra goody that some of us get.

Nina

[Radha]

i know exactly how you feel, and how frustrating it is, my PCP who had treated me for years, suddenly sent me an official letter in the mail saying she couldnt keep me as a patient anymore, that it was too complicated for her and i would be better off with someone else, and i had 2 weeks to find someone, i was in such a panic!! where would i find someone in 2 weeks! and i cannot travel at all, she would come once in a great while to my home, where was i going to find someone to come to my home? then i luckily got my neighbor who knows my parents to take me on, but then when i started asking for meds he knew nothing about, he right away said i would be better off with someone else, and this was all too much for him, so since then i havent asked him anything except just refilling the meds i already take, i live in a very small town and there is no one else to switch to, well, i just wanted to say i know how you feel and i really hope you find someone better, or at least someone to treat the simple problems, hang in there, when one door closes, another one opens,

radha

[becky]

hi dizzygirl,

i just have to say that i know exactly how you feel, my cardio has just postponed my appointment til january (i've been waiting 6 months), and my symptoms are getting worse again after 5 months of pretty good health for me.

but, we are very special, very strong people, and people that decide to take us on and label us with their own stupidity are in for a big shock, we will not hide in the corner and take their @?!*, we will fight!

i may feel bad at the moment but i'm mentally strong, any body who isn't wouldn't cope with this illness, my sister says she'd die if she had it, she says that she wakes up every morning and says, "is this illness real or is someone messing with us?" and she doesn't even live with me to see the really bad days!!

if you feel like sobbing do it, you might feel a little pants afterwards but we all need a good cry, and i think we deserve to feel sorry for ourselves every now and then.

sorry i went on a bit, great news about your scooter, keep your pecker up! thinking of you and sending happy thoughts and hugs

becky x x x