Mayo Clinic Follow-up: Side-tracked by Side Effects

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If you have been following along with my Mayo Clinic story, you know that I have been having one heck of a time with a new beta-blocker prescribed by my new neurologist.

Well, last week I finally decided to throw in the towel after I read this post over at ChronicBabe.com and realized that taking Inderal (propranolol) was causing this side-effect too. I am so glad that Jenni wrote this post and clued me in to this! I also really feel there needs to be more discussion about the sexual side-effects women experience from medications like beta-blockers and antidepressants.

I tried very diligently to connect with my new doctor and get him to prescribe the second choice beta-blocker he mentioned to me. Unfortunately he was out of town two weeks ago and then swamped catching up last week, which sort of left me in the lurch. So after consulting with my family medicine doctor back here in Los Angeles, I went back on Coreg CR, the beta-blocker I have been taking since the Fall of 2007.

There is nothing like making a change to get you really in touch with how bad things were before.

In my case, I am surprised how much better I feel off the Inderal and back on the Coreg CR. I can now clearly see that the Inderal was really making my fatigue much worse, causing several different side effects and overall making me feel sluggish and unfocused. Which is all really too bad, since my neurologist really likes this medication for controlling the symptoms of postural orthostatic tachycardia syndrome (POTS).

I am also quite amazed at myself that I actually tried to tough it out for almost a whole month taking a medication that my body really, really, really didn't like.

Personally, this positively reinforces my usual approach to medications and side-effect management. My philosophy has been that for each new medication I try, if I run into side-effects that I cannot tolerate, I stop the medication immediately.

Looking back, I wish I would have stopped the Inderal and insisted that I needed to try something else once it caused shortness of breath and swollen ankles--both considered severe side-effect according to the handout I got from the pharmacy.

Now I know my doctor was hoping that maybe if I started on a lower dose I could get used to the medication, which seemed like a reasonable idea. Problem is, my body is pretty sensitive to medications and it pretty adamant when it doesn't like something. Like me, it is pretty stubborn and apparently doesn't change its mind when it decides it doesn't like something.

Because persistence is one of my better qualities, I will continue to follow-up with my new neurologist and get that prescription for the next beta-blocker he wants me to try.

Which means this is all "to be continued..."

Related articles

• Question of the Week: Side Effects--When Is Enough, Enough? (ohmyachesandpains.info)
• My Mayo Clinic Adventure - Getting Answers on Day 4 (ohmyachesandpains.info)

Wordless Wednesday: The Desert at the Doorstep of Mayo Clinic Arizona

My Mayo Clinic Adventure - Getting Answers on Day 4

Day Four - Thursday, March 17

8:00 a.m.: It's another early appointment, but instead of tests, today I get some answers. So after a quick breakfast at the hotel, the first one I've been able to eat with Robert in three days, we are back in the car heading down Shea Blvd., bathed in the early morning sunlight. On the drive over we talk about the progress the road construction crew has been making over the past four days resurfacing this busy street.

With the same efficiency that was the hallmark of my first appointment on Monday, the check-in process is a breeze and the wait time minimal. We find ourselves once again sitting on the couch in the examination room for just a few minutes before Dr. Goodman walks in and joins us.

As Dr. Goodman begins to speak I focus all my attention on him and try to absorb each and every word he says. A few minutes in, I suddenly realize that I should be taking notes. I glanced over at Robert and see him typing away on the keyboard of his Blackberry smartphone. Sure enough, he seems to have read my mind and has been taking notes for me.

In that moment, my gratitude towards him grew exponentially.

Based on my recollections and his detailed notes, here's a summary of Dr. Goodman's preliminary findings:

• Based on the autonomic testing, my diagnosis is orthostatic intolerance (also called postural orthostatic tachycardia syndrome or POTS.)

Based on the EMG and nerve conduction study, as well as comparing the current results to my previous study at UCLA in 2005, it is clear that my carpal tunnel syndrome has gotten progressively worse and his recommendation is for surgery to decompress the median nerve.

Because of my complicated medical history, he is unable to discern the cause of my orthostatic intolerance. He is also concerned that, unlike most patients with orthostatic intolerance, the condition will not get better over time and with age.

He expressed his disappointment that I was unable to get a consultation appointment with the Mayo Clinic Hepatology Department and encouraged me to keep my appointment with my hepatologist at UCLA in June. He remains concerned that my chronic hepatitis C infection is playing a role in my orthostatic intolerance.

Based on the EMG and nerve conduction study, there is no evidence of diabetic neuropathy, which means my efforts to tightly control my blood sugar have paid off.

Next he moved on to his treatment recommendations:

• He changed the beta-blocker that I have been taking to another one in a different class. He feels this alternate beta-blocker will better address my symptoms of tachycardia and blood pressure fluctuations.

Because my blood pressure during the autonomic testing bounced between the hypertensive, normal and hypotensive ranges, he wants me to keep my salt intake in the moderate range, at about 4 g per day.

He also suggested that I drink 2 1/2 liters of water a day, but went on to say that some of that daily intake should be an electrolyte enhanced beverage.

In addition to the new beta-blocker, he also prescribed a medication called Mestinon which he felt would help my symptoms of fatigue and heat intolerance.

He remarked that my allergy medication and my prescription sleep medication can both impair my sweating response.

He recommended I elevate the head of our bed six to 8 inches.

As I mentioned earlier this week, he provided me with detailed instructions on incorporating exercise into myself self-care plan and gave me a patient education handout entitled Exercises to Help Manage Orthostatic Hypotension. (I will try my best to include a copy of this document in my Thursday Mission 2011 post.)

Together we decided that it would be best for me to return to see him on an annual basis so I could take advantage of any new treatment options or advancements that might occur over time.

At the end of our time together, he let me know that he did not have the results of my blood tests nor did he have the results of the Holter monitor--which I was still wearing at the time. He let me know that he would be calling me towards the middle of the next week to give me the results of these tests. If I didn't hear from him by Wednesday, I was to call him.

As Robert and I headed out of the examination room and back to the waiting room, I once again asked him, "So what do you think?" This led to a long conversation that began in the waiting room and continued as we went down the elevator, to and from the pharmacy and back to our car. In the process, Robert and I reviewed all the information Dr. Goodman provided me as well as his treatment recommendations.

We both felt that this trip to the Mayo Clinic Arizona was well worth our time, as it provided new information about and new treatment options for my dysautonomia. We both felt reassured that being connected to a real expert in this area meant that I would be getting better care for this condition. We decided it would be worth our time and effort to come back every year to see Dr. Goodman.

After this appointment, we headed back to the hotel to rest and have lunch. Then headed out in search of some some cactus candy to bring back home with us.

3:30 p.m.: We returned back to the cardiology clinic to drop off the Holter monitor that I have been wearing for the past 24 hours. The technician had shown me how to remove the electrodes on my own, so all I had to do was place the device in the bag she gave me and hand it to the receptionist at check-in. We then headed to the pharmacy to pick up my two prescriptions and discuss with them how to go about transferring these prescriptions to my local pharmacy.

With the completion of these two tasks, my time at the Mayo Clinic Arizona came to an end. But in terms of my dysautonomia-related medical care, this is just the beginning. Over the next few months I will learn how this experience will affect the quality of my life with dysautonomia and my other chronic illnesses. And, of course, I will be sharing those results here with you.

Related articles

• My Mayo Clinic Adventure - Day One (ohmyachesandpains.info)
• My Mayo Clinic Adventure - Autonomic Testing on Day 2 (ohmyachesandpains.info)
• My Mayo Clinic Adventure - A Very Busy Day 3 (ohmyachesandpains.info)

My Mayo Clinic Adventure - A Very Busy Day 3

Welcome back to my third installment of my Mayo Clinic adventure.

I'm recounting the events that took place on my third day in Scottsdale, Arizona. This was a very busy day. This is also the day that the thermometer hit 90°, so I was glad to be spending most of my day inside an air-conditioned building.

Day Three - Wednesday, March 16

10:30 a.m.: Thankfully this busy day had a later starting time. However, with fasting blood tests scheduled for this morning, I arrived at the clinic hungry, having not eaten anything since dinner Tuesday evening. Being a type 2 diabetic, I've learned to have a contingency plan for these types of situations and so I packed a juice box and a piece of string cheese into my backpack to eat after the blood work was completed.

The instructions on my itinerary let me know that I would be going for a plasma catecholamine test which measures hormones that are produced by the adrenal glands. These hormones can affect blood pressure, heart rate and other organs as well. The procedure which took place in a lab area on the second floor entailed the insertion of an IV port into my arm. Several tubes of blood were filled from the IV port for some routine blood work. Then I was asked to lay down quietly on a bed in a darkened room to rest for 30 minutes. At the 30 minute mark, another blood sample was taken and then I was asked to stand for 10 minutes. At the end of 10 minutes, another blood sample was taken and then the IV was removed.

The trickiest part of this test was actually getting the IV port in. You see, my veins are deep in my arm and not visible. I chalk that up to my year of cancer treatment back in 1988 when I received four courses of chemotherapy. Ever since, I think my veins hide because they don't want medical professionals tampering with them anymore.

All in all, this wasn't a very difficult test. Fortunately for me, my blood sugar stayed in the normal range over the hour and a half in which this test took place.

My next stop was to the cafeteria for a late breakfast/early lunch with Robert.

1:15 p.m.: After lunch, I was off to the cardiology clinic on the concourse level to be given a Holter monitor. A Holter monitor is worn for 24 hours and it records your heart rate during that entire time. Four electrodes were stuck to my chest and connected by wires to a device about the size of a deck of cards. The tech put the monitor into a paper fabric pouch with strings attached which she tied around my neck. I immediately knew that this was going to aggravate my neck pain but I waited until I could get to the bathroom to move it into my bra where it would be less irritating.

The purpose of this test was to see what my heart rate looked like over the course of the day. In the past, this same test was used to capture data to calculate something called a heart rate variability study. I wasn't sure if Dr. Goodman was repeating the heart rate variability study but I decided to wait until I got the results to see what he had ordered.

1:45 p.m.: With two appointments down and one left to go, Robert and I decided to headed outside for a little while to soak up some of the desert atmosphere. I pulled out my camera and took some pictures of the landscape, the flora and the flags flying in the constant breeze. We found a bench in the shade where we sat for a while. Despite the 90° temperature, the combination of the breeze and the shade made sitting outdoors comfortable.

I then headed to the patient lounge on the concourse level where there was a room set aside with recliners and dim lighting for patients to rest. So I pulled out my MP3 player, plugged in my headphones, pulled out my Kindle and put my feet up to rest up before my next appointment. Before I knew it, the ambience of the room lulled me into a 30 minute nap. I woke up with just enough time to grab a quick snack and something to drink before I headed to my third and final appointment of the day.

3:15 p.m.: Out of all of the tests that Dr. Goodman had ordered for me, I was most worried about the EMG and nerve conduction study. My previous experience with this particular test at UCLA was not a pleasant one. I felt so dizzy and nauseated afterward I was unable to drive myself home and needed to call a friend to come pick me up. This time, I knew I had Robert with me so at least getting back to the hotel wasn't going to be an issue.

I also worried that I'd be in for even more problems this time since the testing would involve both my arm and leg. Yet despite all my concerns, the technicians and doctors who performed these tests did an outstanding job. I certainly see the benefits of having experienced medical personnel conducting these tests.

As for the actual tests themselves, they aren't the most pleasant things to endure.

The nerve conduction part of the test was performed by two technicians who tested my right leg and right arm. Electrodes were placed on the skin along the pathway of the nerve to be tested. So for example, for the median nerve which travels from the wrist to the fingers, an electrode was placed at the wrist and then three electrodes were placed, one each, on the thumb and the first two fingers. An electric shock was generated by the electrode at the wrist and information about how that shock traveled along the nerve to the fingertips was recorded in the electrodes placed there.

The EMG portion of the test was conducted by a physician. Ultra fine wires were inserted through the skin into the belly of a muscle. Once in place, the wires record the electrical activity of that muscle both at rest and during a contraction. During the test the doctor shared with me that the muscles in my shoulder were unable to relax completely which seems to be consistent with the chronic pain and muscle spasms I experience on a daily basis in this part of my body.

When he completed the EMG he shared with me that the most significant finding on the nerve conduction study was evidence of moderate carpal tunnel syndrome affecting my right hand. He explained that surgery would be indicated if I was bothered by the symptoms in my right hand. Once again, his findings were consistent with the numbness, tingling and pain I experience on a daily basis in my right hand.

After spending about an hour and a half in the exam room, my EMG and nerve conduction studies were complete and I was able to get dressed and head back out to the waiting room to meet up with Robert. I was pleasantly surprised that I was feeling no ill effects from the tests and wouldn't need to hurry back to the hotel room to spend time in bed recovering.

Phew! That concludes day 3 of my Mayo Clinic adventure. I'll be back to talk about my fourth and final day tomorrow, which includes my second visit with Dr. Goodman.

Related articles

• My Mayo Clinic Adventure - Day One (ohmyachesandpains.info)
• My Mayo Clinic Adventure - Autonomic Testing on Day 2 (ohmyachesandpains.info)

Mission 2011: A Report on My Big Special Event

In my Mission 2011 post today, I want to talk about my big special event this month and what I did to plan for it to make it a success.

Planning for Success
As you know from my posts earlier this week, last week I traveled to Scottsdale, Arizona for a neurology consultation at the Mayo Clinic. After making this appointment in January, the first step I took was to imagine what this experience would look like. That led me to the activities I needed to plan for: travel, packing and trip schedule.

Travel

My first consideration was traveling to and from Scottsdale. I talked it over with my husband and we decided to travel by car for this trip, with Robert acting as our designated driver. With the help of Google Maps I learned that the trip by car would take approximately 6 to 8 hours. Before we left, we decided that we would stop at the halfway point, Blythe, California, to have a late lunch/early dinner. Once we got on the road, we discovered that taking advantage of the rest stops every 100 miles or so was also a helpful strategy. I was amazed at how stiff and sore I got just from sitting still in the car for an hour and a half at a time.

I made sure to bring along a couple of assistive aids to make sitting in the car more comfortable. These included a travel neck pillow and a car seat cushion. On the trip to Scottsdale, I realized that I had forgotten something. Since I am so short I have problems resting my feet comfortably on the floor of the car when I'm in the passenger's seat. I improvised by using my backpack as a foot rest. On the trip home I acquired an old phone book to use in place of my backpack. That worked so well that when I got home I used duck tape to turn the phone book into a more sturdy foot rest alternative.

Packing

As for packing, I admit that I usually I wait until the very last minute to get my bags packed. Since waiting to the last minute doesn't work so well for me anymore now that I am dealing with chronic pain and chronic fatigue, I decided it was time to allocate a full week to this task. I broke the task of packing up into smaller projects that could be tackled one day at a time. So, for example, I spent one day packing up all my toiletries, another day packing up all my clothes, a third day gathering all my medical records for my appointment, etc. Overall, this strategy worked much better and is something that I will repeat the next time that we travel.

Trip Schedule

Since the purpose of this trip was to obtain medical care, Robert and I didn't expect to be doing much sightseeing. We knew our days would be planned around whatever medical tests and follow appointments that were scheduled after my initial consultation. Knowing that these activities would use up a lot of my energy, my main goal during the week was to use any free time we had resting and napping.

When Robert and I travel for fun, which we do about once every 18 months, we plan for one day of rest after each day of activity. For me, this is a big change from how I used to approach travel. Previously, I was the kind of person who filled every moment of a trip with all sorts of activities befitting the destination. With chronic illness, this simply isn't possible anymore. Ironically, Robert actually likes my new approach to travel activities much better.

The Week Before and After

The week before we left I made sure not to schedule any appointments or errands outside the house. When I wasn't packing I made sure that I was resting. I also made sure that I got plenty of sleep as I knew that my sleep schedule would be disrupted by both the travel to our destination and a schedule imposed upon me by all my anticipated medical appointments. I find that the night before we leave on a trip I tend to not sleep very well, probably because my body gets wired from anticipation which makes it difficult for me to fall and stay asleep.

Upon our return this past weekend I've been focused exclusively on getting extra rest and sleep to recover from our trip. Again, I have made sure not to schedule any appointments for this week and limited my errands to a trip to the grocery store where I purchased more ready-to-eat items to conserve energy on meal preparation. So far, this has worked very well for me.

The Big Pay-Off

I know my plans have paid off because I haven't flared up. Through planning, pacing and resting, I have learned to manage my symptoms despite travel, a change of schedule, unfamiliar surroundings and a different bed. Now that is my definition of successful special event planning.

Now that you know my secrets, I am confident you can do the same.

Related articles

• Mission 2011: When Your Special Event Involves Travel (ohmyachesandpains.info)
• Mission 2011: Saying "Yes!" to Special Events (ohmyachesandpains.info)
• My Mayo Clinic Adventure - Day One (ohmyachesandpains.info)
• My Mayo Clinic Adventure - Autonomic Testing on Day 2 (ohmyachesandpains.info)

My Mayo Clinic Adventure - Day One

I spent all of last week in Scottsdale Arizona so I could be seen by dysautonomia expert Dr. Brent Goodman at the Mayo Clinic. Beginning this week, I want to share with you my impressions of this experience. This was my very first time traveling outside of the Los Angeles metropolitan area to seek medical care.

Day One - Monday, March 14th

1:00 PM: I arrived right at my check-in time, delayed in getting there 15 minutes early by road construction along Shea Road. As we arrive, I see that the clinic building is a soft grayish-tan color that almost blends into the surrounding desert landscape. Robert heads for patient drop off curb at the front door, I get out and I hurry inside.

Just inside the sliding glass doors is a reception desk. The staff sitting there smile at me and ask me where I am going. "Third floor," I said. They let me know the elevators are on the other side of the wall and then a volunteer pops out from behind the desk to escort me there.

'Wow,' I think, 'That is some kind of service.'

It's a short elevator ride up to the top floor of the building. When I disembarked, I see a large waiting room half full of people. Ahead of me is two poles connected by rope line with a sign for Check-In on the left and Scheduling on the right. I get into the Check-In line and wait for the two people ahead of me to get called to the large oval desk where there are four smiling employees working the Check-In windows and four working Scheduling windows.

'Seems like everyone here has a smile on their face,' I note to myself. 'This must be a nice place to work.'

I present my appointment confirmation paperwork when I am finally called to the desk. The check-in is a breeze and I am asked to sit on the left side of the waiting room. By now, Robert has joined me, having no problems finding a parking space in the ample and free underground parking beneath the building. Then I am called to the far right window on scheduling side of the desk, which is registration. Since I pre-registered over the phone the week before, I just need to sign one form and present my photo ID and insurance cards.

As I am standing at the registration window, I hear my name called. "Here!" I say in response. The woman helping me lets the staff member calling my name know I am almost finished with my paperwork. I then go straight from the registration window to a exam room.

Sitting on a couch in an examination room, I get started on the three pages of forms I somehow neglected to complete in my appointment packet. I can only get a half page completed by the time Dr. Goodman arrives. For a patient who is used to waiting up to one hour to be seen by a doctor, I am quite amazed how on time they are here at the Mayo Clinic. Which means I need to make sure I get to any subsequent appointments on time, if not early.

After introductions the doctor asks me for my medical history. Like the professional patient that I am, I dive into my soliloquy, inviting the doctor to stop me and ask questions if I get off track along the way. He compliments me at the end of my story for giving such a complete and detailed history.

Next is the physical exam. He excuses himself from the room so I can disrobe and change into a hospital gown. He is gone long enough for me to work on the forms again, but I still don't have them done by the time he comes back. Once back in the room, he conducts one of the most complete exams I have had from a neurologist. Along the way, I am surprised to learn that I have problems telling the difference between sharp and dull pain stimuli; I silently chalk that up to my fibromyalgia which makes all pain seem bigger and stronger than it is.

He leaves the room again so I can change back into my clothes. This time, I finally finish those three pages of forms by the time he returns again. Now it's his turn to talk, explaining that I have three risk factors for dysautonomia: my previous cancer treatment, my chronic Hepatitis C infection and my type 2 diabetes. He's not sure if he can determine which ones are responsible, at which point I interject that I am not so concerned about that. I tell him what I really hope is that he can help me manage my symptoms better.

He wants to run several tests, including one to make sure that my symptoms aren't related to a particular type of cancer. 'I'll worry about cancer if the test comes back positive,' I think to myself. He is also putting in a referral to the Hepatology Department, asking for a consult on my Hepatitis C status. We end the visit with Dr. Goodman letting me know that we will meet again towards the end of the week to review the test results.

Robert and I walk back out to the waiting room. I ask him what he thinks so far and he's not sure yet. We both like Dr. Goodman, but Robert wants to reserve judgment until he sees what tests the doctor orders and what his recommendations are.

They call me from the Scheduling side of the desk and give me a pager. The staff person helping me lets me know Dr. Goodman has ordered eight different appointments for me and it's going to take some time to schedule all of them. When the scheduling is complete, the pager will go off, letting me know I need to head back to the desk and pick up my appointment schedule.

Robert and I spend most of the time in the waiting room, talking about our expectations and reviewing my first meeting with the doctor. Then we head down to the parking lot so I can grab a snack I left in the back seat of the car. The time seems to move quickly, and by the time we return to the waiting room, my pager is going off.

Up at the Scheduling window I am handed my "itinerary" for the week. They still need to schedule my follow up with Dr. Goodman and they are still trying to get me into the Hepatology Clinic, so I need to check back with them tomorrow for these appointments. As I stop to visit the ladies room on our way back to the car, Robert studies my itinerary and starts figuring out wake-up times, meals breaks and how much time to allocate to travel to and from the clinic.

Once back at the hotel room, I take a stab at refining his schedule, since some of the tests require either fasting or no eating and drinking for three to four hours beforehand.

It's a good thing I asked about how long I needed to stay in Arizona when I scheduled my appointment. I got very good advice when I was told to schedule my first appointment on Monday or Tuesday and then plan to keep the rest of the week open for tests and follow up. By the end of day one, I already know I have appointments for the next three days...

Come back and join me tomorrow. I'll be writing about my experiences with autonomic testing, catecholamine testing and an EMG and nerve conduction study.