Posts Tagged ‘Mayo Clinic’

Mayo Clinic for Dysautonomia Conclusion

April 8th, 2014 by Carrie, the Just Mildly Medicated gal

The week of many doctor appointments was over, I was emotionally and physically exhausted but I was heading home.

myfeet

After a few days at home getting back into our routine and catching up on “vacation” laundry I received the summary of my week from Mayo in the mail.

I will give you some of specifics of my testing in order to tell my story but in no way encourage the sick chick contest. The truth is people are individuals and we all have different baselines of our own personal normal.

On to the test results, don’t worry; I won’t bore you with all of it. These are just the likely diagnosis after each test and a few highlighted comments.

* Vestibular Test (Make You Dizzy and See What Happens)

Diagnosis:

1. Multifactorial Dizziness

2. Orthostatic Intolerance

Recommendation:

1. Appropriate candidate for vestibular and balance rehabilitation program

* Behavioral Health Standardize Assessment: (Mini International Neuropsychiatric Interview… and if that was the mini I can’t fathom the long version)

Diagnosis:

1. Possible Chronic Subjective Dizziness

2. Possible Generalized Anxiety Disorder; She is hypervigilant and a normal response of anxiety can exacerbate hypervigilance as to how her own body is behaving. It is possible that the anxious response could heighten the concerning sensations. She falls under conscientiousness which supports her hyperviligant mindset regarding experiencing symptoms.

* Endocrinology Lab

Everything was normal other than heightened norepinephrine levels were marked too high

*Autonomic Reflux Screen

Diagnosis:

1. Mild Patchy Postganglionic Autonomic Sudomotor Impairment with Cardiovagal and Adrenergic Function; these findings suggest sudomotor neuropathy but do not suggest widespread autonomic failure.

The QSART (Sweat Test) all of my sweat cells were well below the normal range. This surprised me because I feel like a sweat a lot                       but apparently it’s just my face that sweats a lot, awesome…

My TTT was considered normal, my heart rate increased 29 beats five minutes after being raised to a tilt with a normal BP                                       fluctuation, the Postural Orthostatic Tachycardia Syndrome criteria is a heart rate increase of 30 or greater, thanks body…

* Heart Rate and Blood Pressure Monitor

1. Basic rhythm was sinus with intermittent Left Bundle Branch Block. (LBBB)

2. Heart Rate varied from 66 to 147 over the 24 hour period with an average of 94BPM

3. Rare VPC occurred slightly, once in a pair and once in a 3 beat run of ventricular tachycardia, rate 111BPM

4. Rare SVPCs occurred singly and in a pair

5. ST segment analysis does not appear due to her LBBB

6. Low systolic blood pressure reading of 87/41 mmHg at this time ECG strip showed sinus rhythm, rate 77BPM

(I’ll have to ask for this translate into English)

Diagnosis:

Systolic Hypertension Intermittent with Tachycardia / Heart pounding and dizziness usually reported during times when HR and BP were increased

* Audiogram

Normal other than moderate/moderately severe drop at 6 and 8k (these are apparently the sounds of a cricket, so if there is a cricket zombie attack from my left side I might be in trouble.)

* Stress Test

1. Stress Test abnormal but non-diagnostic for ischemia due to LBBB

2. Severely reduced peak VO2

3.  Could be due to profound deconditioning (ass) though we cannot rule out some impairment of cardiac output

4. Peak BP 200/60

5. VO2 rise abnormal

6. O2 pulse rise abnormal

7. HR response resting 106BPM / 1 minute 151BPM

DRUM ROLL PLEASE… The final summary is…

* A mild Autonomic Sudomotor Neuropathy without autonomic failure

* Orthostatic Intolerance and occasional Postural Orthostatic Tachycardia was noted ; a vasodepressor response with no clear evidence of Primary Autonomic Failure

* The fluctuating heart rate during all postural positions in part might reflect intrinsic heart disease

The treatment plan was the same as my current plan just a different schedule. For example I take 10mg of midodrine 3 times a day, Mayo recommends I take 10mg in the morning, 10mg midday, and none or 5mg late afternoon. There were a few medications they would like to see me come off of but the Center for Autonomic Disorders feels they are the right medications for me.

I have a lot of information from Mayo that I can bring to my local team of doctors, mostly my neurologist (who I adore) and cardiologist (who I have already broken up with so now I need to see if we can get back together or find a new one).

My feeling and opinions…

Overall I was disappointed. Most of this information reconfirmed things my previous doctors already knew. My main doctor wanted to start from scratch and ignore my existing diagnosis instead of using it as a starting point even though I had a multitude of testing summaries and disks of imaging that confirmed it.

While the pro to this was a true new set of eyes not tainted by a possible wrong diagnosis, however it also left no time to look at things like getting a new opinion about treatment for my gastroparesis because I was busy being evaluated for things I don’t have much of an issue with; like ruling out migraine and inner ear issues.

I was hoping to find out why this was happening to me, what exactly was causing it, and if there was a treatment option I haven’t explored, it may be that those aren’t answers I will ever have but I felt like my priorities and what I wanted from my experience didn’t match my specialists so it didn’t matter much.

I did learn a few new things regarding cardiology. My current EP Cardiologist basically wrote off most of my cardiac issues on my autonomic system. The Neurologist and Cardiologist at Mayo felt many of these issues were separate from my autonomic system and needed to be reevaluated (hmm, I see a new cardiologist in my future).

The question of the month has been if I recommend going to the Mayo Clinic…

UGH! I’d say that is incredibly unique to each person.

I hoped Mayo would be some medical utopia where I would find specific answers. I imagined a doctor who was going to be very knowledgeable about my specific ailment and empathize with how scary the symptoms are; much like I saw from the doctors at Vanderbilt in the Mystery Diagnosis segment on Linda Smith that I recently shared on my Fb page. (If you haven’t seen it I will include the link at the bottom). I was disappointed when I didn’t feel that was the case for me.

Do I recommend dysautonomia peeps going to Mayo? Yes but only if and here are the if’s…

If you can see Mayo as an option to conform medical issues and possibly find more information I think it is a wonderful option.

If the trip itself doesn’t pose a large financial strain I do think it is worthwhile.

Tips!

If you’re traveling to Rochester during the cold months you still won’t need your long underwear, at least not for the Mayo part of it all. You’ll leave your hotel and take the shuttle to Mayo, the shuttle is heated and carpeted so it is very warm. The shuttle will take you right to the doors of your building. You can check your coat on the first floor.

Your schedule is a guideline. If you are done with one appointment and have an hour before the next you can check in early and in my experience you’ll almost always be seen early. It is the same with appointments for the following days, if you are done with time to spare you can check in at future appointments and see if they can see you.

mywaiting

If your Mayo Clinic app isn’t working (for me a letter was off of my email so I wasn’t receiving the emails to activate my app) call and get that taken care of. If you’re already at Mayo when you realize your app isn’t working ask at any desk and they’ll tell you where to go, off the cuff I want to say it was the business office in Ganda building and it took less than 5 minutes.

If you like burgers you’ll need to eat at Newt’s while you’re there.

Be realistic; it isn’t a medical utopia but it is a top notch medical facility where you will have a multitude of personalities working with you.

Bring your supplies… I mean your hobby supplies. As much as you’ll be busy busy busy there was also more downtime than I am used to. Luckily my hobby is reading so I was able to download books as I went. I think I read three books that week.

The standard answer to the question of how long you can expect your stay to be seems to be 3 to 5 days however most people who I know had appointments spread over 5 to 7. My appointments were over 6 days and I only made arrangements for childcare for a Monday through Friday stay. At the neurologists desk said they would do a phone consult for my final appointment. When I called to confirm when I should expect the call the neurologists secretary said he doesn’t do telephone consults. They do however mail you everything including final notes from the mail doctor regarding all of your testing and appointments. You may want to consider staying a bit longer then the time-frame you’re given.

Mayo Day One

Mayo Testing

Other Just Mildly Medicated Posts to check out

Being thankful when chronically ill

Tietze Syndrome… OUCH

and

Mystery Diagnosis segment on Linda Smith

 

Mayo Clinic; Testing, Testing 1,2,3…

April 2nd, 2014 by Carrie, the Just Mildly Medicated gal

So my first appointment at Mayo had me in a little bit of a mood, then having to hang out for another day waiting for our insurance to authorize referrals left me a bit… well ironically, anxious.

We did get out around Rochester Tuesday, a burger place called Newt’s where things you haven’t imagined are happening. After a great lunch I was back to work. I called my insurance company, they told me I needed to have the referrals sent to my Primary Care Manager. I then called my PCM let them know to be on the lookout for the referrals and to submit them ASAP as I am sitting around in a hotel waiting. I then call Mayo to make sure they have the best numbers to reach my PCM, they say they don’t send referrals to the PCM only directly to the insurance company. I call the insurance company; tell them the referrals are coming straight to them and to please send the authorizations directly to Mayo at a certain fax number to expedite things. The insurance company tells me they can’t fax authorizations and they’ll get them in the mail ASAP. I explain that I am physically at the Mayo Clinic waiting; they counter that Mayo Clinic does not count as admitted to a hospital blah blah WTF… Apparently I am the first person EVER to go to the Mayo Clinic with my insurance.

Being a chronically ill patient is like swimming upstream. You’re never really done or get to the destination; most people don’t understand why you are still swimming at all. The answer is pretty simple, I am not going to get swept away.

I got a call at 5pm that day from Mayo and they had a schedule for me! I was so relieved to have a plan. Now it was time to get rolling.

Wednesday:

10 am Behavioral Health for an evaluation and discussion of Anxiety Disorders

1 pm 24 hour Holter and BP cuff Placement

2 pm Endocrinology Lab (titer as well as norepinephrine, epinephrine, and dopamine measurements)

Thursday:

8am Behavioral Health for an evaluation and discussion on possible Chronic Subjective Dizziness

10:30 am Audiogram/ Hearing exam

1:15 pm Stress Test with Oxygen Uptake

Friday:

8:45 am Autonomic Reflex Testing, Reflex Sympathetic Dystrophy (RSD) which includes QSART or “sweat test”, monitoring during simple maneuvers like deep breathing, then the finally of a 10 minute Tilt Table Test.

11 am Cardiology Health Clinic Consult

Testing that was scheduled but for dates I would no longer be at the Mayo Clinic:

Otorhinolarynology Vestibular Test or Balance Test (should be called Make You Dizzy and See What Happens Test)

Behavioral Health Follow Up

Neurology Follow Up.

After checking in to my first Behavioral Health Appointment  I am given the first of many red pagers. Each check in you’re handed a red pager that first vibrates than starts beeping when its your turn. I had to kind of laugh because it has been almost 20 years since I last carried around a pager, though for different reasons, willing it to go off.

Mayo pager

I loath psychology evaluations. I am an anxious over explainer (okay so that isn’t an actual diagnosis) so being asked to answer questions with a yes or no makes me sweat. Things like “Do you think about your health condition daily?” Well yes, every time I am symptomatic, but I am not sitting in a corner freaking out about it. To my HUGE relief I loved everyone at Behavioral Health. They stayed on task but we also had some fun. After several “well yes BUT” responses on my part the examiner and I agreed I likely had Wellyesbut syndrome.

Then it was off to get suited up for my Holter Monitor and BP cuff Placement. Many of us have been hooked up to holters multiple times, this was no different. The BP cuff was new to me though. I have a monitor at home but its a wrist cuff and doesn’t go off at timed intervals, that BP cuff goes off every 10 minutes during the daytime and every 20 minutes between 10pm to 7am. So much for a restful night…

Endocrine Lab I did measured several titers, vitamin, and hormone levels. For the norepinephrine, epinephrine and dopamine portion you are hooked up to an IV and then get to lie down in a dim and quiet room for about 30 minutes, then someone sneaks in and draws blood for the first measurement. After that you walk around for 10 minutes and go back and have another set drawn.

The next day’s Behavioral Health was painless as well. We covered a lot of information on Chronic Subjective Dizziness as well as more on Anxiety Disorders. There was a long conversation about the difference between being an anxious person due to personality traits verses suffering from an Anxiety Disorder and the physiological changes that happen in a person with Chronic Subjective Dizziness. It will take more conversations with my medical providers at home to decide if I am having psychological responses to dizziness or if I am dizzy because of physiological changes. The endless circle of trying to isolate if the chicken or the egg came first…

Audiogram DONE. I have two high pitch sounds that I am not hearing in my left ear but other than a zombie cricket invasion coming from the left side I think I am fine. My hearing wasn’t thought to be an issue so much as the hearing evaluation had to be passed before I could do the Vestibular Testing and I was on a stand by list for that.

Next was the stress test. Now the last time I did a stress test I had an episode of nonsustained Ventricular Tachycardia and I was in no rush to get to that appointment early.

my heart

Okay, a gal can only avoid something for so long… hooked up and ready to run… Okay walk, lets not get carried away. The tab for the ECG were attached and we did a few resting HR and BP readings. I made it 7 minutes into the stress test and it was stopped.

The Autonomic Reflex Testing or Reflex Sympathetic Dystrophy (RSD), was exciting. The other tests up until this point were things I could have done at home and some I had already done a few times, this one was new. Now my being excited to participate in testing that could help lead to a more detailed understanding of what was happening to me shouldn’t be confused with excitement to actually DO the testing.

I laid down and they made quick work of attaching padding to my left arm and leg explaining that these are sweat cells and they will put a mild electrical current that will activate the nerve and collect the sweat level.

“You know what guys, I think I’m good… maybe we’ll skip this one.”

No such luck, apparently they thought I was kidding. It was explained it will feel like a mosquito bite on the inside that I can’t touch, but only until I start to sweat and then it will ease up. Well my upper lip started sweating but apparently that was about it. It stung like several mosquito bites at each pad location and it stung the entire time. (Liar butts!)

Next was motoring HR and BP during simple instructions. They asked me to breath deeply for awhile, then we did very long forceful exhaling, and holding my breath. No big deal other than I started to see spots during that whole long forceful exhaling… I mean who does that?

Time for the roller coaster ride called a Tilt Table Test. Now mind you this is simple lying down on a table with straps over you for security and then the table rises to create a safe measurement of BP and HR during a postural change. The test is geared to see if a postural change triggers neurocardiogenic syncope, something not normally triggered by postural changes but more in extreme “stress” situations like people who faint at the sight of blood or the new father who passes out while his wife is giving birth. For some of us it just happens when we stand up.

Then I went to another Albott and Costello routine with cardiology.

Cardiologist “You are severely deconditioned. You’re in the bottom 25% for women your age with an inability to complete the stress test. you’re VO2 is severely decreased and you’re  max pulse pressure is much too wide. Nonsustained Ventricular Tachycardia for someone like you doesn’t surprise me but it shouldn’t be happening. At least your BMI falls somewhat in a normal range.”

Me “I had these same issues during my first stress test and I was working out regularly and was in no means deconditioned. I don’t believe I am deconditioned now. I work out a minimum of 3 days a week for at least 20 minutes. I’ve biked 100 miles in a week, I’ve done the 100 push up challenge, I love pilaties; trust me I’d much rather kick ass than not be able to do things. I only have these issues when trying to do anything upright, even walking, in fact I was walking the whole duration of the stress test. I don’t even believe in the BMI because it doesn’t take the physical structure of a person in account but I fall comfortably in the normal range. I bet I could last longer than you on the recumbent bike test.”

(not sure I recommend challenging your cardiologist to a race but I was pissed)

Cardiologist “You are severely deconditioned. You’re in the bottom 25% for women your age with an inability to complete the stress test. you’re VO2 is severely decreased and you’re  max pulse pressure is much too wide. Nonsustained Ventricular Tachycardia for someone like you doesn’t surprise me but it shouldn’t be happening.”

Me “I had these same issues during my first stress test and I was working out regularly and was in no means deconditioned. I don’t believe I am deconditioned now. I work out a minimum of 3 days a week for at least 20 minutes. I’ve biked 100 miles in a week, I’ve done the 100 push up challenge, I love pilaties; trust me I’d much rather kick ass than not be able to do things. I only have these issues when trying to do anything upright, even walking, in fact I was walking the whole duration of the stress test. I don’t even believe in the BMI because it doesn’t take the physical structure of a person in account but I fall comfortably in the normal range. I bet I could last longer than you on the recumbent bike test.”

After a few rounds of that my husband interrupted and said “Enough” the cardiologist and I both shut up. My husband asked the cardiologist what he recommended (exercise program 3 to 5 days a week no joke) and we left.

It was Friday afternoon and my last day at Mayo so we went and checked with Otorhinolaryngology to see if I could get in to do the Balance Test.

myfeey

Mayo Clinic; Dysautonomia chick still on her feet

waiting, waiting waiting… and I’m in!

Posturography was the first part of the Make You Dizzy and See What Happens test.

mypaper

Umm, safety harness… what…

Well I didn’t get harnessed, the older gentleman testing me just said “Don’t worry, I’ll catch you.” Hmm, all of a sudden being harnessed sounded like a better option but it ended up fine. The moving platform was just a foam pad that was unstable but not moving. It was kind of like Wii Fit only on thick foam.

Then it was on to Vestibular Evoked Myogenic Potentials, which means time for more electrodes, this time on my face and neck.

myfacewires

This test was only mildly annoying not difficult. A small ear piece is placed in your ear and you turn your head to one side and when you hear a sound you lift your head. the electrode measures small involuntary muscle movement that is triggered by your inner ear. The sound in your ear happens to sound very much like a helicopter is landing on you.

Next was a Videonystagmography; for this I wore goggles that had a camera inside recording my eyes as I followed a light across a screen, then in different positions with directions (like lie on your left side and look as far to the right as you can), next a cover went over the goggles so it was dark and I had to look left and right.

myfacegoggles

 

The last part was a doosy though. You lie down and the tester puts water in your ear canal. This creates involuntary movement of your eyes which is being recorded by the very heavy but fashionable goggle camera. The only thing is as soon as the water hit my ear the world started spinning. This is a pretty normal response but holy camoly I wish I’d been prepared for that.

After this we went to the last two appointments and tried to get in but weren’t able to. Those appointments were cancelled and we were told I’d get a phone call from the neurologist and then all of my records would be mailed.

Check this link for the results from the Mayo Clinic Testing.

If you missed it here is Day One of my Mayo trip.

Thanks for all of your support!

 

 

Mayo Clinic Day One

March 20th, 2014 by Carrie, the Just Mildly Medicated gal

I know I’ll be asked a few times from fellow Dysautonomiacs if I recommend going to the Mayo Clinic. That is a tough question and one I will try to answer with both the pros and cons of my experience after I write about what each day was like. I do ask you to keep in mind that my experience is based on just that, my experience. The way a referral is accepted (going straight to a certain department verses the Mayo Clinic general), how your insurance company processes referrals, the communication and rapport you have with the doctors you see, and how you are feeling health wise the week that you’re there will all greatly impact your experience.

Mayo Day One…

mayo1

I was there; all my paperwork filled out, my medical book records and CD copies of tests, a list of both symptoms and questions in hand, and all of my prescription medications in a giant zip-lock bag. I am ready to get my first of many gold stickers of the week for being knowledgeable about my condition, prepared, and following directions.

When I am called to go back it’s all the normal stuff; BP, weight, medication list, etc. However she reminded me instantly of Ferris Beullar’s teacher. When she asks about meds I pull out the paper I just filled out and let her know I brought all the prescription bottles (because it says right on the first page of the 10 pages I filled out that I needed to have them with me). She gets to typing; well not really, she asks me each medication “So you take such and such medication?” “So you take this dosage?” “So you take this medication at this time and that time?”

Now I have to admit I am one of those no chatting let’s get moving kind of people, and I am here at the All Stars for sick chicks. LET’S GO LADY. So I repeated after each question; “Yes, just like I filled out on the paper there.” Inside I was saying; “Are you kidding me? I filled this out in the waiting room, nothing has changed…”

TIME FOR THE DOCTOR

I’ll admit I was very close to a high five or even slapping him on the butt and yelling; “THIS IS GONNA BE A GREAT WEEK! I’M SO EXCITED TO BE WITH MY NEW TEAM!” He didn’t seem like the kind of guy that would appreciate a butt slap and yelling so I opted for a more traditional handshake.

We got off to a rocky start, we just weren’t connecting. He wanted to scratch the tests I’d previously done and anything I had learned about my condition. While I was fine with this clean slate idea conceptually I did have issues with the practicality of this approach, I am here for 5 days only and I wanted to make the most of it. How was I going to get to the nitty gritty of understanding the specific type of dysautonomia I had if we were back to establishing IF that is what I have? It isn’t that I am so emotionally attached to my diagnosis, something I was accused of being, it’s that I had all this information with me that led to this diagnosis, some done more than once, and we weren’t going to look at it?

Dysautonomia can be tricky, for example someone with POTS (Postural Tachycardia Syndrome) can have a normal Tilt Table Test one time and a very drastically different Tilt Table Test the following day. One of my doctors outside of Mayo who lives with gastroparesis understood my frustration; the first time he had an empty gastric study it was normal and then later he had a second and third that confirmed gastroparesis. I had a hard time letting go of the work that my doctors (and I) had already done to get to my diagnosis. I wanted to build on what was already there and find out more specific things like narrowing down what type of Dysautonomia I have since there have been a few discrepancies from different doctors, not reinvent the wheel.

Okay, I am channeling my inner… whatever the white haired sister on Frozen’s name is and let it go…

This doctor is navigating me through my Mayo experience but I am still navigating my health, this is a week of tests and experiences… (breaking into Let It Go in my head again)… “Umm wait, what did you just say!? My autonomic issues are because I am stressed… anxiety, did he just say PTSD??” Time to come out from my Frozen brain and pay attention.

So we did an Abbott and Costello routine, here it is very paraphrased.

Me “I am not saying that I don’t have an issue with anxiety or even PTSD for that matter but I’m not sure that is the bigger picture with my autonomic system. I mean would that cause hypovolemia and gastroparesis? I only ask because we looked at anxiety several different times and still ended up at dysautonomia.”

Doc “You’re supposed to forget what you’ve been told. You’re probably having a physiological reaction to stress and anxiety or possibly migraines.”

Me “I am not saying that I don’t have an issue with anxiety or even PTSD for that matter but I’m not sure that is the bigger picture with my autonomic system. I mean would that cause hypovolemia and gastroparesis? I only ask because we looked at anxiety several different times and still ended up at dysautonomia.”

Doc “You’re supposed to forget what you’ve been told. You’re probably having a physiological reaction to stress and anxiety or possibly migraines.”

So after some sit down, stand up, sit down, lie down, stand back up, and sit back down one last time my time was up. The good doctor typed some things in the computer, and yes… that part gives me anxiety because whatever he types in there will follow me to each and every doctor I will see here.

Okay, so my first appointment wasn’t what I expected in my utopia Mayo dreams. You can tell it was a tad disappointing, my poor husband had to listen to me start a conversation out-loud at some random mid internal dialog for the next 24 hours; “…I mean really? I brought the Tilt Table Test, the Stress Test, and those notes…” “…it’s not like he ever even answered my questions.” “…we already looked into anxiety disorders…”

This went on for the next 24 hours because that is how long it took for my insurance company to approve my referrals…

Next is the testing phase  at Mayo, you can also check out some other posts from the Just Mildly Medicated gal.

Disabled, Mobility aid, and Chronic Illness…

That crazy Dysautonomia thing I keep talking about…

5 Things to Think About Before Saying, unless you’re just an ass…

 

Coping with Chronic Illness

May 14th, 2013 by Carrie, the Just Mildly Medicated gal

I remember the day I was officially diagnosed with a Chronic Illness, Dysautonomia. My husband and I were overwhelmed with questions, information, and emotions. I was scribbling down notes and trying to remember everything.

That was a much anticipated appointment. The specialist was about a 15 hour drive from home and a bit of a celebrity in the Dysautonomia world. We knew we had limited time to get the answers to questions we had been asking for over a year.I found the notes from that appointment today. While flipping through them I remembered all the mixed emotions from that day. I was part worried he would say that I did in fact have Dysautonomia and part worried he’d say that I didn’t.

Let me clarify, in no part did I want to have any type of illness, but it was inevitable that something was wrong and I figured it would be easier to have what this doctor in front of me specialized in than to have to start over somewhere else. After some time looking back at the notes from that day I started to remember more specific feelings and thoughts during that conversation, mostly about a small part of the three hour appointment when he spoke about some things I might feel after everything sunk in.

My notes read:

*Denial and Grief – Done. Felt that when the very first doc said “You should see a cardiologist as soon as possible.”

* Relief of a Diagnosis – Done. Hell I was down-right excited to have words for how I felt other than “I don’t feel good.”

* Empowered – Done. I was learning what exactly what was happening to me and that was empowering.

* Depression – Skip. No need for that one, I have an awesome husband who is supportive and wonderful family and friends.

* Acceptance – Awesome. I am already becoming empowered; acceptance should be what, maybe a few weeks away.

Clearly I saw these things that I might feel as a check list that I could run through.

 

What I clearly had was no idea how coping with a chronic illness worked.

Just Mildly Medicated

I would say most people assume that because I am open about having a chronic illness and do my best to bring awareness to Dysautonomia that I am empowered and accept it. I have actually had someone say “You seem to embrace it”. It felt like the time to shed light on what coping with chronic illness has been like for me thus far.

Denial

I was not as safe from it as I had previously thought. Apparently even when you know the information and have had almost all the tests done (still waiting on those cool Mayo Clinic Tests) denial can work its way in.  I am in the process of three things that will hopefully improve my quality of life; a trip to the Mayo Clinic, a power wheelchair, and regular IV therapy.

I cannot convey how many times I have doubted myself while moving towards these things. Negative thoughts have caused me to put off moving forward with treatment options because I would think to myself that I can’t really need it that badly. Why in the world would someone second guess something to improve their quality of life, things their doctor has suggested? …because you’re in denial.

Relief of a Diagnosis

 That part was very true. I was actually happy for weeks after that appointment. Not only was it not just in my head but I wasn’t lazy or over dramatic. I had an answer, actual words I could say. “I am sorry guys, I can’t make the festival this year. It is too much walking around with Dysautonomia.” Instead of saying yes and worrying if I would get dizzy or feel sick and seem distant or annoyed.Then all of a sudden the back lash hit. Now that I have a diagnosis I actually have something, and the something has no return policy. I was overwhelmed with the concept of being sick for real. Laziness is mind over matter… your Autonomic Nervous System is matter over mind. Even Bruce Banner couldn’t control his heart rate. In all seriousness this realization was the beginning of the next stage.

 Grief 

 I became sick slowly over a span of a few years. I felt like I had time to adjust to my new normal instead of a sudden onset. For the most part that was true. I was prepared, if at all, to grieve about what I used to be able to do.  All of a sudden one day I realized I wouldn’t go back to work the way I had assumed I would.That isn’t to say I am not a functioning productive citizen because I am, but it wasn’t going to be in the way I had assumed. I spent time grieving an idea, and that did lead to a bit of depression.

 Depression 

 Depression for me wasn’t what I expected. It reared in an angrier version of sad, or a bitter unexpected manifesto of the two. I second guessed my life, my very happy life as a wife and mother of four. If I had made other choices maybe I wouldn’t have triggered this slow progression that has now consumed so much.

Empowerment

Empowerment did come through researching, writing, and connecting. Blogging as well as reading other blogs and getting to know others who have medical issues, those have been outlets to express and learn. It has given a value to going through all of this. I still don’t feel so warm and fuzzy about Dysautonomia.

Acceptance 

This one seems a foggy illusion. It’s like the way you prep for a conversation and run it through your head only when the time comes no one says what you thought they would and you’d like to hit some kind of rewind to keep things on track better. I think acceptance can be a particularly hard one for me because others assume I am there. I mean how could I write about this nonstop if I don’t accept it? I think the answer is because I am in the hopes it helps me get there.

The biggest thing I’d want to share is that my original view, the check list version of the stages, it just isn’t how it works. Acceptance isn’t a location you arrive at and think ‘wow that was a long drive’.  It is normal to transition back and forth through these stages, sometimes quickly. I’ve had denial, acceptance, and more denial all over one specific thing in one day. You can assume you will be impacted in one way, like I did with grieving, and it actually happens in a way you never considered. It is a roller coaster.

How has your journey been different than you expected?

*These stages are from a conversation with one specialist where many other medical issues were covered. This is in no way meant to be the psychological guideline of dealing with an illness but more of a personal evaluation of my own experience.

** If you feel you have been in any stage for a period of time that is causing a negative impact on yourself or those around you seek out you physicians help.

The beginning of a trip to the Mayo Clinic, Night Ranger and Roller Coasters

February 18th, 2013 by Carrie, the Just Mildly Medicated gal

Hold on, let me get some coffee…

I knew the referral was in the works and that a letter from the Center for Autonomic Dysfunction was on the way to add to my records but seeing it, knowing that soon I will be hashing out when the Autonomic and Cardiology departments can see me during the same week, it is kind of strange.

I tried to actually avoid the Mayo Clinic. Early on, I was given the option of Mayo or a small Florida based Autonomic Dysfunction Clinic. I looked at the testing each one required and went for the small facility to avoid being a lab rat. Unfortunately being diagnosed with cardiac issues, gastrointestinal, and neurological it has been agreed on that Mayo is the place for me to get the most detailed understanding of all the layers of medical issues.

So in the car dear hubby asked what exactly they’ll do to me at the Mayo Clinic. I wasn’t much in the mood to discuss it so in true to form for me I digressed to what was on the radio.

We went over the meaning of Night Ranger’s Sister Christian. Just in case anyone asks you it is NOT about a girl who is conflicted about becoming a nun, damn misleading 80′s videos. It was actually written by the drummer about his coming of age sister (Chrissy) who was ‘motoring’ around town with the wrong boys.

Okay, now I am ready to talk about it… From my conversation with the clinic and from a few friends from my support group who have gone for Dysautonomia I have a general idea of what to expect.

My week or two will consist of lots of tests. The basic labs and then a slew of tests I have already done will be done again and compared. ECG, EEG, empty gastric study, stress test, and TTT (Tilt Table Test).

The TTT is very common in the world of Dysautonomia and it isn’t a fun one for us. I am not looking forward to doing that one again. This little short range of movement shown in the pic below causes a person with an autonomic dysfunction all kinds of crazy havoc. Some pass out, for me it caused irregular changes in my blood pressure, heart rate and rhythm abnormalities and near syncope.

My description of it would be a sensation that mimics a roller coaster.

 

graphic is from the Hopkins website

 

The big hope is to forever squash the pacemaker debacle. For anyone who has followed for a while I have a few specialists (2 EP Cardiologists, Dysautonomia Specialist and a local Neurologist) and they all believe I have a different form of Dysautonomia and have very opposing beliefs on if I need a pace maker and defibrillator to keep my Inappropriate Sinus Tachycardia and Bradycardia in a safe range. I am kind of tired of sitting in on them while one reads the last report from the other.

I personally thought it should be settled in an octagon, apparently the Mayo Clinic was a better option. (wusses)

One of the cool tests is the Quantitative Sudomotor Autonomic Reflex Testing (QSART). The purpose of QSART is to test the small nerve fibers which go to the sweat glands. It to stimulate your sweat glands to see if the nerve and gland respond with a normal ability to sweat. Sounds fun…

pic from the University of Pittsburgh
Neuromuscular Disease Division

 

A new test for me, and my local Neurologist is down right excited over it, is the Thermoregulatory Sweat Test. A gold powder that changes color with sweating is applied all over the body. So yes, I will be gold dusted and pretty much think I will look like Angelina Jolie in Beowolf. Oh and I should add my doc is geeky excited over a cool test, not that I will be dusted with gold, the hubs is kind of digging the gold idea…

I edited for PG rating from Film and Digital Media on Blogspot

 

I will then enter what has been described to me as a giant tanning bed that gets really hot. It slowly increases temperature, which will eventually will make me sweat. Digital photos document the results and apparently how I sweat will help confirm what is happening to me and why.

image is from the US National Library of Medicine

 

Now why in the world didn’t I pursue this first you ask?!?!

Because even the Mayo Clinic doesn’t have a secret formula to cure or ease Dysautonomia. I am in the hopes the tests will lay out, very specifically with no room for interpretation, what type of Dysautonomia I have and possibly why I have it. My mother suffers with this condition, as does my daughter and more likely than not my sister and cousin. I hope that I can get answers that will help all of us receive the care we need.

I will keep you posted, until then I will remain Just Mildly Medicated.