Doctor Frustrations

[Razzles]

I'm sure you all know the feeling: you wait for weeks for an appointment with a specialist and then the whole thing is a let down and you're back to square one. 

Yesterday, I went to a doctor after some testing and I was ready to get some answers. I've been keeping a notebook where I write my HR and other symptoms down daily and he said my "heart rate really isn't all that high"  -- despite a difference of 30+ beats on standing. He gave me a pill and sent me on my way. When I went to pick up the prescription, the pharmacist said it was for high blood pressure. I told him I have low blood pressure and he raised his eyebrows and said, "well, be careful with this."

I was so frustrated and tired that I went home and wondered if I'm even sick at all -- no one seems to be taking it seriously so maybe it's not even real. My mom said I should be happy that my blood work, ultrasounds, and EKGs are all normal. Still, it doesn't make my lightheadedness go away, or explain why I can't remain upright for more than two hours at a time, or why one of my pupils will randomly dilate, or why I can't be in heat, or why my legs are purple and painful on standing for periods of time. 

I don't know if they don't believe that POTS is real or if they don't understand the way I feel. I had to take a medical leave of absence from school, I'm terrified to drive  a car because I once almost passed out behind the wheel and ended up in a ditch, and I am hesitant to be away from the house for more than a few short hours. 

The doctor didn't want to do a TTT when I asked because he didn't think that would explain anything. I really don't know where to go from here. I feel like every time I go to the doctor, they throw some pills at me without trying to understand the underlying problems. I know there isn't a magical cure-all for POTS specifically, but it would be nice if I felt like a doctor was at least listening.

Anyway, that's my vent for the day. Thank you for reading -- I just needed to get that out. 

[cmreber]

So sorry you are having a hard time finding a doctor who will listen, it is one of the most frustrating parts of POTS!  (Well, among all of the other super frustrating parts LOL!)  But not being listened to when you are actively seeking medical help, that just makes everything so much worse.  People think, oh you are too young to have anything wrong with you, or you look too normal to have anything really wrong with you.  I definitely experienced some of that in the beginning, but I eventually found people who did take me seriously, and it made such a huge difference.  Maybe see if you can find someone who specializes in autonomic disorders?  Not sure where you are located.  My first stop after a wonderful cardiologist at Stanford finally diagnosed me with POTS was the Mayo Clinic.  They not only listened to me and confirmed the diagnosis, but also helped me understand it better and put together a plan for me to try and get my life back on track.  Don't give up on getting help, you just need to find the right person to help you sort through everything.  It can be a long road, but we're all here for you to vent to in the meantime <3  I hope you find some answers soon!

[Guest KiminOrlando]

My opinion, change doctors. You have not found the right one yet. You know how it goes... you have to kiss a lot of frogs before you find your prince. You got another frog. ?

Did they put you on a beta blocker? It has a primary use for high BP, but what it really does is keep you heart rate from getting too high. In some POTS patients, high heart rate cause your BP to drop, triggering episodes. It seems counterintuitive, but it works. The pharmacist probably only knows what the med is usually used for. We are UNUSUAL.

If it isn't a beta blocker, what is it? 

Keep your chin up. I know you are beyond ready for some solutions to your symptoms. 

Kim 

[cmreber]

I agree with Kim, if it is a beta blocker, most pharmacists don't understand what we use it for with POTS.  I've also had many MA's say, oh, metoprolol for high blood pressure?  But, in reality, it does help with the high heart rate and makes symptoms a lot more tolerable!

[Razzles]

I'm going to see if I can find a neurologist. The guy I was seeing was a cardiologist. The Mayo Clinic said they'd accept me as a patient, but that I need to have a diagnosis first before I can go. I feel like if I can at least get that far then maybe I can talk to someone who knows more about POTS. I really don't think my cardiologist knows that much about it. 

Kim~ I'm on Duloxetine currently which is a beta blocker. The pill he prescribed is Verapamil. I've never heard of it; the package just says that it is used to treat HBP, chest pain, and abnormal heartbeats. 

[cmreber]

I'm glad you are seeking other opinions.  I had the best luck with a neurologist also!  Unfortunately, so many doctors have never even heard of it.

[marcus99]

I have given up on doctors alltogether. In my country (netherlands) you are very unlikely to find anyone with a clue on how to help POTS.

My cardiologist didn't care that my HR went from 80 to over 150 within a minute of standing on a tilt test and feet&legs turning red/purple from blood pooling. The echo & EKG of my heart were normal, so I do not have a problem he says 

[Guest KiminOrlando]

@Razzles Verapamil is a calcium channel blocker. I have never been on a calcium channel blocker, but people on this site have and can maybe comment. You can also use the search function to look up old threads about calcium channel blockers. 

Interesting. I can see why you are concerned. I would want to know more before I took the med too. I'm sure there is a reason he gave it to you, but I get your frustration.

Are you hypo or hyper POTS - or you don't really know because you can't get a doctor to run the stupid test?

 

@marcus99 I am sorry you are having such trouble finding help in Netherlands. As difficult as it is here in the U.S., I can't imagine getting treatment in other places. Do you have government run healthcare or is it still private healthcare? I guess that is why we have healthcare tourism here in the U.S. People with money come from overseas to see our doctors.

I hope both of you feel better soon.

Kim 

[corina]

Hi Marcus! I'm from the Netherlands too and am working with a great neurologist who is very familiar with POTS and is on our Physician's list! You can find his info here:

http://www.dinet.org/physicians/?advanced_search_submitted=1&csrfKey=7e73563a7f0e643c61a7fe1691e946ad&content_field_7=Gert&content_field_5=van Dijk&content_field_9[1]=Neurology&content_field_17=&content_field_1000=&&&sortby=primary_id_field&sortdirection=asc&record_type=all&time_frame=show_all

[marcus99]

11 hours ago, KiminOrlando said:

@marcus99 I am sorry you are having such trouble finding help in Netherlands. As difficult as it is here in the U.S., I can't imagine getting treatment in other places. Do you have government run healthcare or is it still private healthcare? I guess that is why we have healthcare tourism here in the U.S. People with money come from overseas to see our doctors.

I hope both of you feel better soon.

Kim 

It is currently semi-privatized healthcare here. All specialists are together in business-partnership and they "rent" hospital locations/rooms while paramedics (nurses etc) are in contract with the hospital itself, very weird system. It is so different per doctor, I have had doctors Googling things in front of me and just reading them out.  

10 hours ago, corina said:

Hi Marcus! I'm from the Netherlands too and am working with a great neurologist who is very familiar with POTS and is on our Physician's list! You can find his info here:

http://www.dinet.org/physicians/?advanced_search_submitted=1&csrfKey=7e73563a7f0e643c61a7fe1691e946ad&content_field_7=Gert&content_field_5=van Dijk&content_field_9[1]=Neurology&content_field_17=&content_field_1000=&&&sortby=primary_id_field&sortdirection=asc&record_type=all&time_frame=show_all

Hallo Corina, thank you for the link!! I remember mailing this Dr. about half a year ago after seeing him in the list on this site, but never received a reply, I figured maybe he was out of business, but perhaps I used a wrong e-mail adress.  

[corina]

Marcus, I assume it works better to consult him directly instead of e-mailing. He's very busy as he's the dysautonomia doctor in the Netherlands. He doesn't always have all the answers ie he talked my case over with Dr Grubb in the US, which tells me he wants the best for his patients and doesn't think too much of himself than to ask colleagues their opinions. 

[Razzles]

@KiminOrlando - I'm not sure what kind of POTS I have. The doctor's are too busy testing and re-testing my thyroid to do anything about my POTS  
I'll look up some information on calcium channel blockers -- thanks!

 

@marcus99 - I hope you can find someone to help you with your POTS. My cardiologist did all standard tests and all the results were normal, so like you, my doctor was just like, "well, you're fine." 

[BuffRockChick]

Hey Razzles, I bet your doctor is trying to communicate "your circulatory system is fine" rather than dismiss the validity and impact of your symptoms.  Sounds like it's time for a neurologist since you've ruled out endocrine and cardio as sources of your symptoms.  Good luck!  I hope you find relief of your symptoms!