Six More Weeks of Sickness

Well, it has been about six weeks since my trip to the Mayo Clinic for answers. In my previous posts, I let you in on what the Mayo Clinic had come up with. That being said, I needed to get off most of the medications I was put on orginially and add a “miracle medication” that should help the pain.

I use quotations to highlight the fact that there is no miracle medication. In fact, it has not even touched my pain.

And I’ve grown more sick.

About two weeks ago I developed tachycardia. My resting heart rate was anywhere from 100-125. And at times reaching the 145 mark. This has resulted in multiple ER visits, more specialist appointments, and overall frustration for this patient.

Because of the tachycardia, I had to stop taking the ‘miracle medication” from the Mayo Clinic. In fact, the doctors suggest I get back on a medication that I spent 6 weeks weaning off of.

The irony in the situation is I am right back where I was 2 months ago– pre Mayo. I’m in pain. I have debilitating symptoms: orthostatic hypotension, tachycardia, and shortness of breath.

My wonderful cardiologist agreed to see me the day after I called him at his home number. Luckily, I know him well from my church. He agreed to help me and see me through to the end. I should have called him 5 months ago when this whole ordeal began. He believes the tachycardia is an autonomic dysfunction. He isn’t sure of the cause, but believes it has something to do with my autoimmune thyroid disease. I need to see an endocrinologist. The first available appointment is June 8. sigh. It is funny, after being sick for 5 months, there are STILL specialities I have not seen.

And so I wait. Take medicine. And attempt to manage my symptoms.

 

 

 

6 Comments on “Six More Weeks of Sickness

  1. I bet you get “sick” of people telling you to hang in there, but at least there are still some uncharted specialties out there that may still find a diagnosis and cure….

  2. Sorry to hear you’re no better than before, Sarah. Might I suggest you monitor the #rheum, #autoimmune, and #chronicpain sites on Twitter, like I do? You’ll find a supportive environment, plus lots of free and useful information that might help you figure this problem out, or at least to manage it better. I’m a firm believer in the power of ePatients to facilitate their own best healthcare. I know you know this already. 😉

    Best,

    Bob

  3. Sarah, I’m experiencing very similar sx. I’m a 50y/o flight nurse from Toledo, Ohio. After Lots of testing I was dx with POTS. Google Hyper adergenic POTS. By Dr Blair Grubb from the University of Toledo Medical Center. Did you have a tilt table test yet? Email me back if you would like additional info. Good luck.-Bob

  4. My struggle getting help with my daughter didn’t come from the specialist or the hospitals…they kept turning me away…it took the pediatrician (just an “ordinary doctor”) to take one look at her and get her the help she need…which turned out to be 3 surgeries, 4 blood transfusions, 2 months of antibiotics and 6 months of physical therapy…when if one of the specialist we saw had looked at the big picture could have avoided the ordeal be prescribing an oral antibiotic when her first symptoms started showing!

    My experience made me a much more understanding nurse with anxious patients and families who don’t trust our profession. It has made me a much better advocate and listener!

    This process must be feeling hopeless and terribly frustrating at this point to you, but keep fighting and don’t stop screaming for help! Lots of love, miss you bunches!

    And if all else fails maybe I can find some pliers or something and come fix you myself 😉

  5. So sorry, Sarah, that you are not better. Have been facing a medical crisis with my husband, and have had numerous friends and relatives telling us to go to Mayo. Not sure we will, but have thought of you every time someone mentions Mayo. It’s sad to hear that you have gotten worse….prayers of help and comfort coming your way (again).

  6. Thanks for the update, Sarah. You have been so diligent in searching for the cause of this mysterious illness, and I am so sorry you have not found the answers yet. I marvel at your strength…but then I know from Whom it comes. So glad to hear you have a new advocate…and to know it is a cardiologist from First Prez. no less. Remaining hopeful and prayerful.

    Diane

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