Is it live or is it memorex?

If you read about Topamax side effects, you might think that I was bonkers for ever swallowing a single pill.  The more I do, the more I am very, very much hoping that the miracle migraine pill is the source of all recent ills in my body.

Just a couple of hours after falling asleep Tuesday night, I awoke suddenly.  I thought it was early Wednesday morning and time for my thyroid medication, so I got up and took it.  But once back in bed, I realized I was feeling...odd.  First my jaw started hurting.  Then my left arm.  My lower back.  Then, I watched my heart rate climb and climb and climb and climb. By 188, I was swallowing baby aspirin and calling for help, both 911 and Sandra...for Amos at least. Another episode in the ER led to being admitted to the only opening on the cardiac floor: the heart failure unit. With negative tests and a heart rate down to the 100s, I was finally discharged late Wednesday night.

I kept getting...well..strongly chastised for taking four Imitrex; the doctors kept telling me my heart problems were from an overdose of Imitrex.  One cardiologist said that my theophylline levels were too high and that I should not be taking it at all, but then she didn't know anything about dysautonomia (mispronouncing it) and so I should ignore her advice anyway.  Seriously, what does one do with such care as that?  Once home, I confirmed that I had, indeed, followed the directions.

The next day, I collapsed at Target whilst asking the pharmacist to check my medications as she was filling two more prescriptions.  Fred had been hanging out on the phone with me for a while. I am sure if he had known how long I was standing trying to go through the papers on the different drugs the pharmacist had gathered for me, he would have hit me upside the head.  Pretty much anyone would have.  Bettina surely would have been forbidding all over the place.  The assistant turned out to be a nurse on the unit where I was, so she saw me going downhill even as she was asking me lots of questions (chief among them was why in the world I was discharged).  The assistant/nurse wanted to call an ambulance, but I just wanted to go home.  By then I knew my heart rate would eventually go down and I just wanted to be home.  The pharmacist did have a very good thought about why it might be the Topamax: how I was absorbing it, since I do not absorb Theophylline easily (hence my large dose to achieve a therapeutic level).  The assistant helped me to my car and Bettina stayed on the phone with me as I struggled to stifle my panic as my heart rate rose and rose and rose again.

Yesterday, I dragged myself to the doctor's office, earning three offers to help me on over to the hospital between car and waiting room.  I guess I looked pretty bad.  Considering that I couldn't take but a few steps without huffing and puffing, I didn't care.  The nurse wanted to admit me, but I was much better by the time the doctor saw me in the room since I napped for a while.  She told me that she had looked up my prescription and had seen that I had followed the directions given to me, had not mistakenly overdosed, and was actually not getting enough medication.  However, my prescription was written for 50mg every two hours up to 4 doses.  I should have had 100 mg up to 2 doses.  So, I was trying to stop my migraines with half doses. Perhaps...perhaps...this means I might be able to conquer the next one instead of having it linger as they all do.

That is the rub.  Most of the time, I cannot tell.  Is it live or is it memorex?

That is also the rub about Tuesday night.  I stopped the migraine!  I stopped the blasted, bloody migraine.  I stopped it.  Afterward, I put myself to bed with a bit of Xanax to be sure to get some good sleep before my appointment with the surgeon.  I was going to go the surgeon and have a hard conversation about hormones and migraines and next steps.  I was going to go to church for the first time in forever.  I had told Mary, Sandra, and Fred & Ethel about my church plan.  Wednesday was the day!

Wednesday was not the day.

My doctor agreed that Topamax seemed to be the culprit, given the timing of the onset of symptoms and pharmacist's confirmation that Topamax and Loestrin do not like each other and we already knew that Loestrin and Theophylline are not the best of friends, leading her to re-order all my medication. Being re-admitted, I would have been under observation as the Topamax leaves my system, but I wanted to be home.  No matter how wretched I feel and how scared I am.  I talked my way into being wheeled back to my car and allowed to go home.  I suppose money shouldn't dictate medical care, but I missed Amos ever so much while I was in the hospital, the hospital did not get my medications to me until nearly 5:00 PM (which meant no food since I had no Acarbose), and hospitals are very, very, very lonely places.

Basically, other than my ventures out to Target and the doctor, I have been languishing on the GREEN chair.  I miss my bed.  I am still huffing and puffing.  My face is still numb.  I am still having intermittent chest pains.  My heart rate still jumps with the slightest bit of movement, but it did not spike last night.  [Thus far, the highest I have seen my heart climb is 221.  Egads!] Christ be praised the unbelievably intense nausea has eased and I am no longer taking the most AWESOME medicine called Zofran, a MIRACLE drug that takes away nausea without knocking you out!  It does not last long with my body, so the nausea would return, building and building until I could take the next pill, but Zofran meant that for the first time since taking Topamax, I did not have that 16 or 18 hours of straight, horrid nausea.  [Seriously, when Myrtle cannot even look at a Dr Pepper, you know the nausea is pretty bad.]

We also opted to forgo Theophylline last night as well, since my heart is basically the Energizer bunny on Red Bull.  Tonight, I will resume that medication.  By Monday, the Topamax should all be gone.  And by the end of this next week, I should know if all is going to be quiet on the western front.  However, that means I am back to square one regarding the migraines.

The neurologist spent approximately 10 minutes with me, as a new patient.  I was appalled and felt a bit like dirt, sitting in the parking lot.  I certainly didn't matter much as a suffering human being in need of medical care.  But I filled the prescription and wrote down my appointment for a 3-month follow-up.

However, I have a very complex history and have these wretched, new intense migraines that are unresponsive to medication.  In between them, the memorex part, I have constant shadow migraines. I am on a medication that raises my heart rate because of dysautonomia's impact on my autonomic cardiac functions and this doctor prescribed a medication that has a primary side effect of a rapid heart rate.

The reason I was at her office was because the medication I was taking for a severe hormonal imbalance causing emotional and mental problems means adding hormones to a body with a neurological disease that twists hormones into migraines.  And yet this doctor prescribed a medication that has a primary side effects of depression and suicidal thoughts.  Thirteen percent of patients experience those side effects!

Dysautonomia also causes anxiety and cognitive dysfunction and confusion.  More of Topamax's side effects are anxiety, memory problems, and difficulty concentrating.

Forget the fact that the numbness is also a side effect of Topamax, surely the reason why I could no longer feel first my lips and then my face.  Simply add up the rapid heart rate, depression, suicidal thoughts, anxiety, memory problems, and difficulty concentrating.  Why in the world would you choose a medication with such serious side effects that mirror the problems your patient already has due to a neurological disease that is incurable and essentially untreatable?  Life with dysautonomia is all about trying to manage symptoms and find medications with side effects that might help you, not make your life worse.

Did I err because I did not insist that she look up the medication and review all the side effects with me right then and there?  Or perhaps I needed to ask her to tell me how each of my current medications interact as is and how adding Topamax might affect one or all of them?  Only...which one of is is the doctor?

The good news is that I am not in heart failure (really good news since all four grandparents had heart disease and both of my grandfathers died relatively young from it). The bad news is that I have been quite ill, I am still ill, and I am not sure when I will be better.  Plus, I do not know how the migraines can be treated.

The other medication the neurologist offered was Nortriptyline.  I had already read a bit about that one, so I chose the unknown, I chose the Topamax when told the decision was six-in-one-half-a-dozen-in-another.  I am not a doctor.  I am not a medical professional in any way, shape, or form.  But from the ER to the cardiac failure unit, not a single nurse or doctor knew what dysautonomia was beyond a disease once mentioned in a class.  From this experience and some other past distress, I want to draw a line in the sand and say that unless my life is at stake, I am not taking any more medication that has side effects that are neurological in nature, for lack of a better term, such as dizziness, anxiety, cognitive, etc. Nor am I willing to take any medication that has a side effect that includes rapid heart rate!

I suppose the bottom line is that all the migraine treatments seem to be about systemic approaches that muck about with things better left untouched in my body.  Straight pain relief is not really an option either, because hard core narcotics need to be an option of last resort with me due to the fact that they completely stop my innards for days on end now.  And I really, really, really need to find a neurologist who will savor the challenge of an unfamiliar disease.

Since I am still rather frightened, ill, and filled with gloom, I should note some positives about this episode: 1) I learned about Zofran, help with nausea that will not leave me incapacitated from drowsiness; 2) I learned that I was not prescribed Imitrex correctly, hope that I might be able to finally stop migraines even if I cannot prevent them; and 3) I was proscribed Toradol, another NSAID, help with the headaches between migraines--which helped somewhat and completely erased the tendinitis pain even though it wore off and I cannot take it full time.

And...since I know you have been grieving with me over the loss of cable, which also means the loss of all the NASCAR races that are only shown on ESPN, I thought I would note that I found a $0.99 app that has the radio broadcasts of the races.  I am listening to the Nationwide Daytona race at the moment.  Truly, concentrating on a spoken auto race is near impossible, but those announcers get so very excited.  One cannot help but join in with their enthusiasm.  Tomorrow, the race is on a main station.  Tomorrow, my heart should be slower so the excitement of all those awesome crashes won't send me back to the hospital. And, tomorrow, I might even be able to leap out of the GREEN chair and jump up and down cheering for Junior without huffing and puffing too much!


I am Yours, Lord.  Save me!