Tired Of Getting The Run Around From Docs

[shayden]

Hi All,

I know I have not been on here in awhile but I have been pretty sick and sitting up to type on my computer just does not fair well these days. At this point...I am simply at my wits end with POTS, NCS, and most of all...Doctor's! So I am hoping that you all may be able to give me some advice.

I faint just about every single day. When I am not unconsious, I am as dizzy as a child that just spun around for 20 minutes in the yard. I have horrible tremors, stomach issues, headaches, sleeping problems, and various other things. Too tired to list them all. Due to fainting, I have had some pretty serious injuries that include broken bones, torn ligaments, sprains, and major scarring. So to the current problem, I feel like the Doctor's that I see, just don't know what to do with me.

Here is the most recent situation and trust me, this happens quite frequently. So I get in to situations where I will start fainting multiple times a day, so I will schedule an appointment with my GP for that day. He has no idea what to do so he recommends I go back up to Toledo. So I go home, call Dr. Grubbs office and schedule an appointment with Bev for the following week. I go in for the appointment with Bev, she recommends specific medications, one that she will prescribe but others that I will need to get my GP to prescribe. I come home, call my GP for the meds needed and fill the ones I have prescriptions for. My GP then says that he needs to speak with Grubb or Bev directly about the recommended meds before prescribing them and puts a call into them. I start the other meds, have a bad reaction or they won't work, go see my GP a week later and he tells me that he still has no suggestions and that he needs to talk to Grubb or Bev before proceeding. A month later, this vicious circle is still going, my GP states that he has not received a return phone call, and I am stuck here suffering.

Seriously, I have NO idea what to do. I feel like no one is on my side and that I am just left here to figure this out on my own. I am in this situation now and after 2 days on not hearing back from my GP, I get this really rude phone call from his nurse stating that "the reason we have not called you back Susan is because we can't do anything for you without speaking to Grubb or Bev first. If you want to try to call them directly and have them prescribe them...best of luck to ya...but in the meantime...you just have to wait. Oh..and now your Doctor is out of the office on vacation until next week so don't be expecting us to call you back before then."

I am floored and my imediate response after listening to that Voicemail is....OH...You are so fired!!! But then I am just going to have to start this process all over again. I will have to basically train another educated idiot on POTS. I know I can't be the only patient going through this.

Any advice???

Susan

[Ernie]

Hi,

Can you go back to Bev?

[shayden]

Hi Ernie,

I saw Bev last Monday and I really don't want my husband to have to take off work to take another 3 hour (one way) trip to Toledo just to be told again that I would need to get this through my GP. I guess certain kinds of drugs can raise levels, lower levels and just have bad reactions with some people and with how bad my health is already, she wants to make sure that once the drug is prescribed, I am being monitored closely by a Doctor and with her being 3 hours away, that is just not possible on her end.

Make Sense???

Susan

[futurehope]

I'm truly sorry for all your difficulties.

I only had one thought. Have you had your adrenal output tested? I'm not giving medical advice and maybe you've already had this done. Usually endocrinologists do this test.

Hugs and blessings. I hope something changes for you soon.

[Ernie]

Hi,

I understand.

It took me 3,5 years and 12 specialists before I got the Epogen that Dr Grubb prescribed me so I know what the run around means.

I don't know what is your shortest route.

He just prescribed me cymbalta the last time I went and I can't even get it in Canada and he did not give me the script so I am stuck for now until I go back to see him.

[masumeh]

I'm feeling for you! Thank God, I don't faint every day anymore. But my first year w/POTS was much what you described. Fainting every day (sometimes up to five times a day), dizzy, unable to coordinate walking, weak, constipated, nauseated, depressed, etc. It's really hard, and nobody's going to tell you otherwise with total honesty. Sometimes we just have to hang on to our faith, inner strength, distractions, and sense of humor, etc...and wait it out. We're all right there with you!

As for the doctor thing, I personally think that if they've done all they can, maybe just taking a break is good for recovery, bc this forces you to search for coping strategies within, and it allows you much needed rest from the hope-disappointment cycle and all the appointments and med reactions.

One coping strategy I learnt the hard way is not to allow myself any excitement, anger, or stress. I just had to learn to let the world flow over me. Any time I allowed myself an emotional reaction, I would get sick coming down from it. This is bc of the relationship btw autonomic nervous role in emotional reactions (not just fight or flight, etc.), as you know. But this is something no doctor can teach you.

For the stomach problems, I had a really great gastro doc who told me to avoid raw fruits and vegetables, and a whole list of other things. Cooked vegies are good, processed fruits are ok. It really worked for my IBS. I also have to avoid all those little hard things in food (i.e., rice, seeds, nuts, anything hard). Also, to stay away from allergins, eggs and milk for me.

If nothing helps, my advice is to just strengthen what the disease cannot take away from you, for one, patience, and anything else that you value that is manageable for you. (for me, it was writing, praying, helping by just holding a baby or listening to a friend, etc)

I really, really hope you find some relief soon!

[juliegee]

Oh Shayden-

I really feel for you. I am so sorry you are getting the run around. As sick as you feel, the coordination of treatment NEEDS to improve. We have a similiar set up with Dr. Rowe from Johns Hopkins. We communicate via E-Mail. I drop off a copy of the E-mail at my son's ped and tell the receptionist I need a script for ...... Please call it in to........ Usually, that same day, I can pick up the drug. My son's ped does all of the follow-up and bloods, etc. Having it in writing via E-Mail makes all of the difference! The ped can read what symptoms precipitated the new script as well as all of Dr. Rowe's recommendations.

Try to get Bev's E-Mail and your doc's E-mail and see if you can't try to coordinate this way. It may be a bit unorthodox, but your current state of health demands thinking "outside of the box."

I'm sending tons of warm hugs your way.

Julie

[Rose]

I'm so sorry about everything you're going through. For 3 years doc's told me all kinds of things, from it's all in my head, to having addisons disease to social anxiety, the list goes on and on, it wasn't until things got super bad , and a doc took charge and actually cared did I get the help I needed. Don't give up, I had to keep on searching for a doc that would listen and understand. Nobody has symtoms like we do for nothing. Only you know you're body, and only you can keep on going. Please make sure you know you're not alone and that this season is wonderful but also stressful which can worsen whats going on, remember to take time to breath and to also take time to knew you'll be alright. God Bless, You're In My Prayers