Saturday, January 31, 2015

Weighing Our Options

Part 2 of 3 about my most recent blood clotting ordeal. Go here for part 1.

Dr. Foley ordered an echocardiogram bubble test to check if there was a hole in my heart between the two upper chambers. It's actually a common occurrence that affects upwards of 25% of the population and is referred to as PFO, or Patent Foramen Ovale. It can lead to a DVT (deep vein thrombosis clot) moving from the venous side of the heart to the arterial side which appears to possibly be what happened in my case.

Without a PFO, the chances for a DVT posing a stroke risk just aren't there. The clot moves via the veins back to the heart and into the lungs where it's stopped and results in a pulmonary embolism or PE. Where a PFO is present, the clot may migrate to the arterial side of the heart and work its way to the brain and cause a stroke or it may become lodged in any number of places as the clot is carried along via the arteries. In my case, a clot became wedged in the popliteal artery.

My bubble test was positive for PFO but it shouldn't pose a risk to me now that I'll be anticoagulated the rest of my life. More than anything it's simply important information to have when trying to sort out the puzzle of my clots.

Keith came by Tuesday afternoon just as I was being wheeled back from Interventional Radiology. He spent over an hour with us. It was nice to see him. I've always felt that I wouldn't be one to want to have all that many visitors if I were to ever find myself in the hospital as I was but I've changed my mind. Visitors are now welcome!

By Tuesday evening I'd been flat on my back for 55 hours but I was about to be given the go-ahead to sit up. The catheter used to deliver the TPA to two of my clots had been removed and was no longer a concern for being crimped if I were to sit up. What a relief!

In Dr. Foley's search for clues about my clotting he turned up the CT-scan taken after my bike crash back in September and something leaped out at him. He noticed what appeared to be aneurysms in my left and right common iliac arteries. The scan wasn't definitive so he ordered a nearly full-body CT-scan to have a better look at that particular area and whatever else the scan would reveal.

The scan was performed Wednesday morning and not long after it was completed Dr. Foley came into my room, stood before us and announced, "I know the reason for your clotting: you have iliac arterial aneurysms!" Say what? This sounded like good news but I couldn't be sure. Good news in the sense that he was on to something more than just the fact that I have Factor V Leiden. He talked briefly with us about the surgery involved in remedying this problem but he preferred to leave most of that discussion for us to have with the surgeon who would be performing the operation.

He told us that the scan I'd just had done showed a new clot in my common iliac artery that wasn't there last September. I picked up on a sense of urgency to not delay in moving forward with the surgery and Tammy and I were both all in. He told me that my arteries were otherwise pristine and that given my health, I was an excellent candidate to tolerate the surgery. We cooled our heels the rest of the day and into the late afternoon waiting for the meeting with our surgeon in anticipation of surgery the next day.

Dr. Johnstone showed up at our room around 6:30 that night and began our meeting by telling us that all of the doctors on the cardiovascular floor know who I am and are familiar with my situation. She had been talking about my case throughout the day with all of them, getting input to be able to better weigh the options for how best to proceed.

She sat down with us and drew a diagram of what's going on inside me. Tammy (more than I) had been studying up on that particular area of the body throughout the day with hopes of being able to fully follow along so we weren't just a couple of bobbleheads with glazed looks over our eyes not grasping any of what was being said. Not to worry. Dr. Johnstone was very thorough in her explanations. She said the clots I have in both the left and right common iliac arteries are smooth and don't appear to be fractured. She couldn't say with 100% certainty that the clots that broke free in my body had come from this area. There was a likely chance they did but she couldn't be sure.

She then described the two surgical procedures used to fix the problem. The first would involve the use of a stent to cover over the blood clots by sealing them between the stent and the walls of the artery. The main risk with this method was a possibility that some of the clot would ooze out at either end of the stent and get into my bloodstream, posing a risk for stroke should the clot matter make it to my brain.

She went on to talk about the size of my arteries being a concern. I have fairly large arteries throughout my body she said but the arteries in this part of my body are twice the normal size. What she couldn't be sure about was whether or not this was because they've always been large or are they still growing in size? If they're still growing in diameter this would pose a problem for the stent as it would eventually become too small for the artery. It's a very non-invasive procedure that would allow me to leave the hospital the next day but its drawbacks were making it an unlikely choice.

The 2nd surgical option, what she described as the "gold standard" to remedy my condition is a major surgery involving cutting me open from just below my heart to a point just above my pubic area. She would then go in and perform a bypass of the clotted area. Recovery from this procedure would be 5 to 7 days post-op in the hospital with 2 of those days spent in ICU (intensive care unit) followed by months of recovery. She said it's a surgery that my body will never fully stop reminding me of. This procedure comes with its own list of risks as well that I'll touch on later.

The 3rd option we discussed was for me to wear a Holter monitor for the next 30 days to see if my heart is experiencing any atrial fibrillation. It's doubtful that it is but she would like to rule it out. If my heart is going into afib there's a chance that it's producing clots in this condition and this could be a source for them.

There was a lot on the table to consider but the short-term decision as to what to do for now was a no-brainer. I chose to wear the Holter monitor for the next month. I also told her, and Tammy agreed, that should I need surgery I would opt for the bypass. It seemed to be the one that would hold up best over time.

She said that if we're able to rule out atrial fibrillation as a cause and I come back and tell her that I'd like the surgery now, she would say that I'm making the right decision but then she added that if I were to tell her that I'd like to wait on the surgery, she would tell me that that too is a right decision. They both have their pros and cons to consider.

This is getting a little lengthy and I've got more to say about our final meeting with Dr. Foley so I'll finish this tomorrow.

Friday, January 30, 2015

I'll Be a Few Hours Late

Where to begin?

I'm finally home after my longest stay ever (4 nights) in a hospital and it's so nice to be back. I've been having more clotting issues related to my Factor V Leiden condition and once again they nearly got the best of me.

I had noticed some cramping in my feet for the past several weeks as well as some pain in my lower left leg when I'd try and workout. It became so debilitating Sunday morning that I couldn't even walk on the treadmill for two minutes at a speed of 1 mph. There was a sharp pain in my shin that was now radiating to my calf which felt exactly like a lactic acid burn when muscles are overworked and starved for oxygen. Because the pain had been more toward the front of my leg I put off any thoughts that it was clot-related but now that it was migrating toward my calf, I was reconsidering.

I went up to talk with Tammy about what I was experiencing and she insisted I head over to Ridges ER in Burnsville to have it looked at. She'd have come with me but she was just beginning her workday and I assured her I was fine to get there on my own. I called my work to tell them, "I'll be a few hours late".

It was a quiet morning in the ER and I was seen within a few minutes. The doctor asked me a few questions while a blood-draw was performed and from what I described he made a cursory diagnosis of Claudication, a circulation problem usually associated with atherosclerosis. He said that what I was describing was classic for this condition but his evaluation made no sense to me. Whatever was happening to me came on much too quickly for it to be related to a hardening of my arteries but if he was right, what did that say about the condition of the arteries in and around my heart? I didn't like what I was hearing.

He sent me back to radiology where they performed an ultrasound looking for clots because of my history with them. The D-dimer test from the blood-draw must've also been positive for clotting because I was no sooner brought back to my room when the doctor had me taken back once more for another scan. They would eventually find a large clot in the popliteal artery behind my left knee. It was literally shutting down nearly all of the blood flow to the lower half of my leg. He drew a diagram for me on the whiteboard and said if we didn't act fast I could lose my left leg at the knee.

He told me of a Dr. Foley at Southdale Fairview and said he's the guy I have to see for this. If he could choose to hand me off to anyone it would be him. He made arrangements to have me taken by ambulance to the emergency room at Southdale Fairview Hospital in Bloomington. Tammy was now by my side and I needed that.

Thankfully, Dr. Foley was there when we arrived and he met us in our room while quickly going over what they had found so far. I expressed to him that I was feeling what may be a pulmonary embolism in my left lung when I breathed deep. I knew that feeling from before. He ordered a CT-scan of my chest to go along with whatever other scans he would need. He didn't like the look of my leg and reiterated what the previous doctor had told me about the distinct possibility that I may lose my leg at the knee. There was virtually no pulse to be found. The only blood flow getting through was from the extraneous system of veins that worked their way through the tissue. The main lines had been cut off. My mind kept going back to the thought of losing part of my leg and what my new normal would be like.

I was wheeled down to Interventional Radiology where their team wasted little time preparing me for what would be maybe a 30 minute procedure to thread a catheter through my right groin at the external iliac artery then up and over through the common iliac artery then back down the left side through the femoral artery to the popliteal artery behind my left knee. Here's a diagram to help.

The vascular surgery team found two clots: one in my left femoral vein and one in my left popliteal artery. The CT-scan would find another in the form of a pulmonary embolism in my right lung. I had no clue how sick I was when I walked into Burnsville Ridges ER a few hours earlier.

The fix for my clots would be to place a very slow drip of TPA (a clot-busting drug) at the site of the clots in my leg and allow it to work over the next couple of days with a vascular surgeon and his team going in on subsequent days to reassess the progress.

I would have lots of downtime in between but Tammy and Rachel were there throughout much of it to keep me company. Having Rachel come up from Rochester to be there meant a lot to me. She's a busy person and I would've understood if she couldn't be there but she was. What a sweetheart!

The IV rack next to my bed was impressive, reminding me of a Christmas tree. Blood-draws were performed sometimes several times a day from a single vial at a time to a dozen. Medical science is amazing as are the people who make up the field.

On Tuesday morning they would spend more than two hours using a combination of methods including angioplasty to try and open up the vascular system of my lower left leg. It's delicate, tedious work as the arteries become tinier and tinier the further down my leg they went but they were successful!

Dr. Foley was described to us as someone who looks at cases such as mine as riddles to be solved and that's exactly how he came across to us. He was in search of clues and an answer as to why my blood was clotting as it was and where the clots were originating from. It isn't enough for him to simply rest on the fact that I have Factor V Leiden and leave it at that.

To be continued...

Friday, January 23, 2015

Some Thoughts of Mine to Someday Look Back On

There's a quote that says “When fascism comes to America, it will be wrapped in the flag and carrying a cross.”

Maybe 'fascism' is a little strong, maybe not, but it's a swipe at where I see too many conservatives today as they brandish their guns and bibles while caught up in a wave of nationalism that carries them along in a most peculiar display of unquestioning loyalty for a cause that is out of focus and offers them little other than fear in return. I don't get it.

There's been lots of discussion on social media this week about Clint Eastwood's new movie American Sniper based on the life of Chris Kyle. I have little to no desire to see it. Perhaps in my other life I'd have been singing its praises along with so many other Christians who can't seem to get enough of this sort of thing but I've moved on. Sorry for sounding so harsh but the way the Christian faith has been hijacked in this country is more than a little unsettling to me.

Rachel spent most of Wednesday afternoon and evening at home with us. We love her visits. For much of our time together she and I sat at the kitchen table and talked. It was so nice. I've been a little under the weather lately and she was just the ray of sunshine my world was craving.

We had dinner at Outback Steakhouse before returning home and settling down to watch the State of the Union address (her idea) that I'd recorded the previous night but hadn't yet had a chance to watch. I wouldn't say she's a political person but maybe she is. She surprises me with her interest in politics but mostly she passes it off as more about wanting to be informed than anything else. I admire that about her.

Her views of the world and her politics have evolved very similarly with Tammy's and mine over the last several years but what's most interesting about that is the way these changes have happened for us with very little influence from one another. We've all been moving in the same direction, separately but together.

I liked Obama's speech and sat amused watching as conservatives couldn't find it within themselves to at times applaud him. Why all of the disdain for this man? He's taken our country from the brink of economic collapse and with no help whatsoever from Republicans, he's helped guide us back to a place where had this been a republican president, conservatives would be touting his accomplishments in terms of greatness.

It's difficult to watch right-wing media and not become annoyed when so much of what's being said there is often so far from what's actually happening. It's annoying to me because the audience appears to just accept what's being said without questioning it. How many times have you heard them talk about the national debt that's accrued during Obama's time in office while at the same time inferring that it's his policies and reckless spending that's to blame? Nothing could be further from the truth. But I get that it's easier to demonize Obama rather than acknowledge the real drivers of our debt and support the current administration in moving forward.

Dodd/Frank is legislation initiated by Obama's administration to help reign in the abuses on Wall Street. Its purpose is to help bring stability to the markets and prevent another meltdown of the kind that sent so many to financial ruin and worked to add to our national debt as revenues fell sharply in the wake of the collapse and the resulting Great Recession. Yet, knowing all that, republicans continue to do all they can to dismantle Dodd/Frank legislation. Why? It makes absolutely no sense whatsoever and is a much larger threat to our way of life than any radical Islamist militant could ever be. But ask a conservative voter to talk about Dodd/Frank and they'll likely give you a blank stare. This is important stuff!

One of the things Obama talked about was offering a community college education at no cost to the student. Yes, I get that at first blush this sounds like another cost we can't afford but think about it: what better investment can we make than in our youth? Don't we at the very least owe them that when you consider the debt we've piled up and will leave to them? One of the memes being shared on Facebook after the speech was the one to the right. It makes perfect sense.

But there's no selling this to republicans. None. Their idea of incentives is to reduce taxes and that's about it. We see where that's gotten us. For the life of me, I cannot understand the amount of support that's still there for conservatism as it exists today with its lack of bold initiatives or even an original new idea.

There's so much divisiveness among us now. Social media—Facebook and such, play a large role in that but I also look at Fox News as being the main contributor with their skewed set of talking points and relentless assault on anything democratic, especially toward Obama, all under the guise of "fair and balanced". They have a stranglehold on a sizeable percentage of the population and I have to wonder what percentage of their viewers ever question what they're being told or the way what they're being told is being presented—as an example: the heavy emphasis on social welfare programs being the culprit for much of what ails us while making no mention of corporate welfare which is nearly twice that of social welfare; or the total lack of talk about abuses on Wall Street and how the huge gap between the haves and the have-nots is extremely deleterious to our economy.

The absence of balance is disturbing considering how many people rely on them for their understanding of the world at large. I get that we all have our biases; I have mine. I'm just finding that I'm losing patience with people who offer up the same talking points I hear from right-wing media while at the same time appearing clueless to some of the larger, more important issues that are seldom if ever talked about where they get their information. I find myself becoming dismissive of them and I don't want to be that way.

I'm sure this clip below was about nothing more than some administration staffers having some fun during a luncheon with the president this week but there's clearly some truth in it. Of all of the personalities on Fox News, I actually don't mind Shepard Smith at all. I see him as being a standout, not trying to push an agenda unlike just about everyone else on the network.

Thursday, January 22, 2015

Cluster Headache Follow-up

I've been feeling desperate to come off the prednisone and not surprisingly, I got too aggressive with my tapering plan and made a mess of my headaches yesterday. I was at 42mg on Monday and stepped down to 37mg on Tuesday and 32mg yesterday. That was too much and it resulted in a day full of headaches that didn't even respond to my oxygen therapy. I recovered nicely though and only had one headache during the night.

We saw Dr. Sethna this morning for my two-week follow-up. It seemed to us like he was trying to find some sort of correlation or common thread for why my headaches are happening but there really is none. I told him that I felt "They happen because they happen".

Considering that I'm more prone to my headaches at night while I'm sleeping, he wanted to make a case for this being a melatonin issue. He said that melatonin is suppressed by the body during daylight and that it enters the bloodstream when you're in a dark environment and that perhaps by sleeping with a light on, I could help lessen the frequency of my attacks. I don't think so. I just don't. He also mentioned neck and muscle tightness being a possible trigger but again, I don't think that's an issue. We tried the muscle relaxer Tizanidine and it was of no benefit at all in stopping my headaches that I could tell. Still, he wants me to try another drug from the same family called Baclofen. I dunno—I told Tammy on the drive home that I think I'll take a pass on it. I think I'm just going to have to allow the headaches to run their course and that throwing drugs at the problem is maybe only going to exacerbate it and I don't want to risk that.

We agreed that my coming off prednisone too quickly doesn't help matters as we saw from yesterday's experience. I showed him the "My Pain Diary" app from my phone so he could see the frequency of my headache attacks.

Tammy mentioned how this latest phase of clusters seemed to be brought on when I was exposed to some strong oil-based paint fumes while doing the work in our laundry room last month. While I think she's likely right, I also think there's something to be made of the fact that my testosterone level is very low at 137. I mentioned to Dr. Sethna that I still hadn't been able to get the prescription for Androderm filled because of some necessary back-and-forth between his office and my insurance company but that I should have it in the next couple of days. He said my testosterone score was the lowest of his cluster headache patients and talked again about the possibility that increasing that level could help to break the headache phase. I'm still hopeful of that and feel it's my best bet apart from just having the cycle play itself out.

Rachel came by yesterday afternoon to spend some time with us. That was so nice of her. She and I sat at the kitchen table for most of the afternoon and evening and chatted and caught up. I really enjoyed our time together because it allowed me to think about stuff other than when my next headache might hit me. We all went to dinner at Outback Steakhouse later in the evening and just really enjoyed our time together. I love her so much! Tammy told me this morning that she came here to spend time with me. I sort of thought that but I wasn't sure. How sweet of her. She mentioned to Tammy that she could see my tiredness in my eyes. I'm teary-eyed as I write this.

This has been going on a long time now. It was 4 months ago today that I crashed my bike when I fell asleep on a ride; a sleep no doubt caused by my prednisone use and the lack of sleep it was causing me. I'll never take my headache-free life for granted again should I ever be so blessed to make my way back.

Sunday, January 18, 2015

And So I Endure

I'm at my wits end with these headaches, having been so beaten down by them. Each night is one of frustration and maddening pain as I'm drawn away from my sleep every 90 minutes by stabbing pain behind my left eye. I stumble my way over to the oxygen tank to turn on the flow to the regulator as I press the mask to my face and take long steady breaths.

It typically takes 15 to 20 minutes for relief to come. I'll hold the pose for several minutes after the pain is gone before entering the headache data in my pain journal on my phone and crawling back into bed to try and resume the sleep I so desperately need.

This interrupted sleep pattern I find myself in has left me perpetually tired and feeling not at all my normal, mostly pleasant self. I was on the edge of my bed 5 times last night, rocking and moaning in pain: at 12:48, 2:25, 4:00, 5:29 and 7:01. Just fucking ridiculous!

No doubt I can hear people saying after reading this "just retire already!" Yeah, I get that and trust me, the thought has been on my mind a lot. The reason I don't is twofold. First: I'm stubborn. Second: I'm not letting my headaches decide when I retire. It's not happening! They've already taken so much from me and I'm not about to give them that power as well. The last thing I want to have happen is to walk away from the job sooner than I want only to find that the headaches suddenly stop within a few days of making such an important decision and with no going back.

And so I endure.

I'm still on too high a dose of prednisone and I desperately want to and need to reduce the amount to a dosage that's less damaging to my body. I've developed a bad case of shinsplints from a single workout on the elliptical one week ago today. I had to cut my workout short after 45 minutes because of a pain in my lower left leg. I was concerned I was experiencing a blood-clot because of how sedentary I've been lately but the pain was in the front of my shin, not a place where a blood-clot would typically occur. I went out riding Wednesday afternoon and almost packed it in after 10 minutes because of the pain. I can only assume it has something to do with the amount of prednisone I'm on which is currently at 50mg a day. That's fine for a burst of a few days but I've been on this amount for over 3 weeks and prior to that I've been averaging around 35mg a day since September. That's simply too much and now my body is suffering from it rather than benefiting.

I feel like I'm living in a nightmare. This is the sort of scenario I've dreaded and I'm living it. I keep wishing for weeks to pass so I can be removed from this period of my life but I'm still here. I'm still smack-dab in the middle of this with no end in sight.

How much more I can endure I do not know.

Saturday, January 17, 2015

Some Sounds from the Past

I spent some time this past week getting more familiar with my Panasonic Lumix Tammy bought me for Christmas. It's my 3rd variation of this camera that I've had in the last 7 years or so. I like them. There's so much it can do and it's not enough to be just a little bit familiar with its many abilities. I want to be able to quickly navigate the menu to get the desired result without too much fumbling around. That's going to take practice and more time spent with the manual, actually getting all the way through it.

I'm very impressed with the Intelligent Zoom mode. I took this photo out of our window from about 18-20 feet away. My experience with other digital zooms is that photo quality quickly suffers using them so I avoid them. Not this one.

I'm listening to some long lost music from my album collection as I blog; specifically the Bellamy Brothers! Nope, I'm not much for country but I love every song on this album, the one featuring their song Let Your Love Flow from 1976.

I methodically went about digitizing several albums with my Stanton turntable and its USB output connection. I'm very pleased with the results. Actually, I don't think I could be happier. Here's a sample, a long-forgotten gem from The Tarney/Spencer Band from 1978. No Time to Lose.

The turntable came with some iZotope software to process the songs into my Macbook. From there I dragged them into Audacity and cleaned up what few ticks and pops I had, which were surprisingly few. They're all currently residing in my iTunes looking pretty as can be! The Best of Bread is the only one in that group available in CD format. I've looked and looked over the years for the others but have never found them. They just simply don't exist in the retail world in a digital format. I've got several more albums I'd like to convert as well.

I had one of my photos from our trip to South Dakota last summer transferred to canvas. It arrived a couple days ago and I really like how it looks but no matter where I put it in the house it just doesn't seem to fit. I may have a spot down in the workout room where I can see it while I ride my trainer but I was hoping for something different. I planned to put it in the sunporch but it doesn't seem to work there, not even the laundry room. If nothing else I suppose it could work as garage wall art. I've still got a Lance Armstrong poster hanging there that needs replacing.

I'm fully committed to retiring at the expiration (or before) of my countdown widget pictured to the left which expires on January 2nd, 2016. It's been nice to be able to work beyond age 56 (the required retirement age for controllers) because of a waiver I qualified for due to time spent in the Flight Service option early on in my career but it's made walking away from this blessing of a career much more difficult than I anticipated. But I'm ready to be done now, or in no more than 350 days!

I'm going to try a helmet mount for my GoPro. So much of what I capture using my handlebar mount has to be discarded because of jerkiness from abrupt movement of the handlebars. I'll have very little of that to contend with using a helmet mount. There's the definite geek-factor I'll be playing into but my desire for better videos is winning out.

I know y'all can't wait!


Monday, January 12, 2015

Oxygen Therapy for Cluster Headaches

I called in sick to work on Saturday, Sunday and today. I'd like to make it in for tomorrow's early morning shift but it's looking doubtful.

My headaches are still plaguing me quite a lot but it's mostly just at night while I'm asleep and first thing in the morning after waking up. It leaves me very tired not being able to sleep through the night with each headache requiring me to get up and don my oxygen mask for the 20 to 30 minutes it takes for the headache to pass.

I started using oxygen one week ago today. I didn't try it sooner because the regimen for fighting my cluster headaches was working: daily prednisone of whatever amount is necessary coupled with 20 mg of Imitrex nasal spray for the occasional breakthrough headache but that's no longer working for me.

The oxygen tanks are delivered directly to our home by a van from Alina. I inhale the pure healing air at a rate of 15 liters per minute through what's called a non-rebreather mask; a mask that helps prevent you from breathing back in air you just exhaled. The oxygen is much more effective than I thought it would be. I'm learning though that I need to stay focused on my breaths and make sure that they're long, steady and filling my lungs, not the shallow breaths that take over during a headache. Once relief finally comes it's very obvious with the headache breaking altogether in a matter of minutes. I'm careful to not come off the oxygen too soon, opting to remain on it for another 5 minutes just to be certain I've sent the beast back to the outermost reaches of my head.

I found an app for my phone that allows me to track my headaches so I can more easily see whatever trendlines may be developing. Adding data to it is simple. I open the app at the beginning of a headache and initiate an entry. It marks the time and I fill in the rest of the details afterward. It takes the guesswork out of trying to remember how frequently my headaches are occurring.

I track my rides and workouts and such so it figures that I'd want to track these as well. It's what I do.

I'm laying low these days, just hanging out at home and allowing my body to rest. I would love to be out riding but I try to not think about that. I jumped on the elliptical yesterday morning for my first workout in 9 days but I had to cut it short after developing a cramp. I didn't fight it. I have to be careful to not allow myself to become too sedentary because of my predisposition for another pulmonary embolism. That's the last thing I need right now.

Edit: little did I know that the cramp I felt was the first sign of a blood clot that would nearly cost me my left leg from the knee down. "I'll be a few hours late"

Saturday, January 10, 2015

Not At All The Way I Wanted To Go Out

I woke up yesterday feeling so good. I slept through the night without the interruption of a headache and without any foreshadows of one. I was feeling as good as I've felt in a while, attributing it to the series of shots the doctor gave me in the back of my scull the previous afternoon. It wasn't until 2:00 in the afternoon that I felt the tug behind my left eye of an approaching cluster headache. I hesitated a little to make certain but then headed upstairs to sit beside my size M oxygen tank to find relief. It came quickly. No worries. I would have a couple more episodes like that later in the evening but nothing that caused me any real concern.

I had to venture out to Walgreens around 5:00 to pick up a prescription for a testosterone patch that my doctor wants me to try. While waiting in the drive-thru he called to inquire as to how I was doing. I told him the good news and he seemed quite pleased. I said that I think it was the steroid he injected me with that helped but he countered that it couldn't have been that because it hadn't even kicked in yet. He said if anything I would've been feeling the effects of the numbing agent in the shot only. He attributed my turnaround to the Tizanidine pills I took just before going to bed. The prescription called for taking 1 to 4 pills. I told him I took 4 to which he replied "ballsy!" Yup, I go for the full effect. They would've had the effect of relaxing the muscles in my neck and head and possibly even keeping the cluster headaches quieted. It's hard to know. Regardless, I was thankful for the reprieve.

He said that with this sort of condition people respond in various ways to the assorted treatments and that there is no one specific approach—that "you just have to play the ball where it lays" so to speak. What had been working for me, the prednisone and Imitrex, is no longer helpful so now we're trying different avenues.

Our conversation was interrupted a couple of times by the pharmacist at the window inquiring about the prescription which they weren't finding in my file, which seemed odd because I'd checked my account on their website and it seemed to indicate that it had been processed and was ready for pickup. I said goodbye to Dr. Sethna and drove around to go speak with the people inside because I was holding up drive-thru traffic in a serious way and I hate to be that guy.

It was Friday evening and they'd been sitting on my prescription all day it turns out, knowing it would need some additional input from my doctor to be accepted by my insurance. Without insurance, the cost of the patches is $1000 so I understand why there needs to be some additional oversight. They said they'd get to it on Monday. I was feeling too good to let it get me down so I smiled and thanked the pharmacist for her efforts.

I took it easy all day yesterday and last night, just wanting to allow my body to recover from what had been a difficult day the previous day. I'd love to have been out on my bike earlier in the day but I needed rest.

At around 7:30 I could sense another headache building. It was a disappointing realization and I went up to break the news to Tammy before donning my oxygen mask. It was gone after 10 minutes of 15 liters per minute oxygen inhaled directly through my non-rebreather mask. It dampened my spirits a little to know that my headaches were still with me but I'm a realist. I would get another just before going to bed at midnight, then 3 more before coming downstairs this morning to let the pups out.

Yeah, I'm a little bit bummed by this turnaround as it's got me thinking about how and when I'll make it back to work? Is there a way to have my medical pulled for the next few weeks with any confidence that I'll get it back when this phase is finally done? I just don't know and that concerns me.

I was blogging last night about wanting to work through the end of the year but at this point I could easily see myself going at the end of the month. Not at all the way I wanted to go out.

Friday, January 9, 2015

With 100% Certainty!

Tammy has spent the last couple of days getting her new sewing room organized. I had no idea it would be this involved. She's going through all of her crafting things located in the den and reorganizing them for storage in her sewing room. I hadn't imagined it would be this involved but it is and once she gets it done it's going to be a great space for her to work in. Good for her. I'm happy we did this and just in time for her pending retirement in April.

Speaking of her retirement; she picked up a pesky virus on her computer downloading a countdown widget for her retirement date. I finally got rid of it but it was much more of a hassle than it should've been to find the solution. I ended up uninstalling her Google browser and all of the associated files then downloaded a clean version. Fixed! But back to her retirement and her idea of a countdown timer. No viruses are possible with this version!

I swore last year when I bid my schedule and vacation for this past year that it would be my last time participating in the bidding process. I was wrong. I was always hedging in my head that I was 85-90% sure I'd be retiring at the end of the year but the 10% or so won out. I can say for certain though that this is without question the last time I'll write my name on a schedule line and I say that with 100% certainty!

I surprised a few people by bidding Tuesday-Wednesday as my days off. It's a very junior schedule but it works for me in a couple of ways: I get to work with a younger crew, which I like, and it has me working shifts where there's not a lot of training happening. I like that too. I hope to finish out the year or somewhere close to it but I'll just take it a month at a time and see where it gets me. We're losing so many people in the spring and it'll be near impossible to get unscheduled time off once they're gone. I may get caught up in the mass exodus as well.

I was going through some of my albums last night from my previous life and found myself kicking around the idea of trying to get some of them digitized. There are two in particular that I've been seeking out since I've been online but they've never come available on CD. One is from a '70s group called Stonebolt. They were a Canadian band with an original sound that worked really well for me. The other is an album by the Bellamy Brothers featuring their single Let Your Love Flow. I've never been much for county-western music but I loved every song on that album. I had originally bought it for my brother-in-law Jerry while I was in the Navy. I came home from leave at one point and it ended up back in my possession and I've kept it safe ever since.

There were several other albums in my collection that I'd like to turn into 1s and 0s so I got to researching turntables that have a USB connection for the conversion to digital. I found this one that I think will work just fine for my needs. That got me thinking too—I think I'll set it up in our sun-porch and actually use it with some of my old albums. I have a friend, Phil, who's always spinning tunes on his turntable, I assume for the richer sound. I hope my ears are still good enough to appreciate the difference!

Video from one of my rides last week that didn't make the blog cutoff.

Thursday, January 8, 2015

My Meeting with a Neurologist

My cluster headache phase has been out of control for the past two days with headaches occurring upwards of more than 8 times a day. That's just unheard of for me.

I saw my primary care physician Monday afternoon and he wasn't happy with me because of the amount of prednisone I've been using. My regular doctor (Dr. John Gay) retired more than a year ago and I've not yet found anyone I'm comfortable with to take his place. As best he could, Dr. Gay appreciated the crippling pain associated with cluster headaches and would go out of his way to see that I got the meds I needed to minimize the pain of my headache phases throughout the years. If that meant using more prednisone than he'd like to see me use then so be it. Living with the pain of cluster headaches is no option either.

The doctor I saw on Monday is a by-the-book sort and he does not color outside the lines. He offered me pain meds to get through the cycle but I told him that those would be of no value to me. Cluster headaches simply don't respond to them. I knew by his suggestion that he didn't have the necessary grasp to advise me on how to proceed so we're parting ways. He did suggest that I see a neurologist and I respect him for that.

And so Tammy arranged an appointment.

It was a snowy, slippery drive that Tammy and I made into Minneapolis for my neurologist meeting this afternoon at the Noran Neurological Clinic with Dr. Sethna. I had just had a cluster headache less than an hour before we left so I figured it would be okay for me to drive but I was wrong. I felt the familiar throbbing begin behind my left eye when we were 20 minutes from the clinic and by the time I parked the car and made it into the reception area I was doing all I could just to keep moving forward. Tammy had me by the arm as we walked through the parking ramp; I was approaching full-blown cluster headache mode. I took a seat inside the clinic and put my head in my hands, rocking in my chair while Tammy worked with the woman behind the desk and got my paperwork filled out.

Within 15 minutes we were meeting with the neurologist. He had some general questions about my headaches: when they began; how long they typically last and how I've treated them in the past and such. He seemed surprised to learn that I was only 17 when I first experienced them. I handed him a list of dates for my cluster phases going back more than 10 years as well as my daily prednisone usage for the past few months. I keep detailed records of this stuff.

He conducted some strength and reflex tests over many parts of my body. I think he was mostly concerned with how the months of prednisone use has affected me. He seemed pleased with how my body was holding up apart from a little shakiness and some overall weakness.

He asked if I was open to trying to induce a cluster headache and I told him that wouldn't be necessary because I was still experiencing the one I'd walked into the clinic with although it was now only hovering at a level 3-4 from the 7-8 it had been. He was curious to see how I'd respond to a cocktail of steroids injected into the back of my skull at the area that is most sensitive to touch near where I feel the pain of a cluster. I told him to feel free to poke me all he wanted. He did a series of 3 rather deep injections, working the needle around to try and reach the spot he was after. I believe the drug was dexamethasone and something beginning with an M that I can't recall. It was a little painful but I told him I didn't mind the pain so much as long as it was different from that of a cluster. I told him that in a somewhat perverse way, a different sort of pain is welcome. It's why we clusterheads sometimes bang our heads against a wall to take our minds off the cluster headache pain. I think he understood.

The injection's effect was noticeable. Within just a few minutes my level 3-4 pain had dropped to a 1.5 at most and I was thinking I'd be able to drive us home.

We talked about some various other forms of treatment beginning with a testosterone evaluation. I told him that I already know I have Low-T with a reading from two years ago of 284, just under the low side of average. He wanted to have me tested again and suggested I consider an 8mg testosterone patch. I asked about the side-effects because I know there are many and he was quick to acknowledge them but he felt the potential for an elevated testosterone level to possibly break the cluster cycle was one worth considering. I agreed without much hesitation.

He also prescribed Tizanidine for me, a muscle relaxer used for migraine sufferers.

Tammy mentioned the psilocybin route and he said he wouldn't discourage anyone from seeking that sort of help but that it obviously wasn't something he could aid us with. He too had read the limited studies about it.

It's been 5 hours since the injection the doctor gave me and I'm feeling as good as I've felt in several days with nothing even close to a headache. This comes as such a relief to me. I'll have to wait to see what the night has in store.

I can't say enough about what a partner I have in Tammy. She is such an advocate for me in seeing to it that I'm doing all I can to manage this situation. She's so incredibly comforting and understanding and that's not always easy to do with these headaches. Oftentimes, spouses can be a little intimidated by these monsters but not Tammy. She knows just what I need, when to come alongside me and when to give me space. I love her so much!

Breaking Point

I had the worst night of my life two nights ago while at work due to cluster headaches that would not stop. I had contemplated calling in sick for the shift earlier in the day because I was feeling off but I figured I'd be fine. It wasn't because of headaches.

I got to work feeling good and ready for the all-night shift. Everything was going well until around 11:05 when I was preparing to go back into the sector and let Jason out so he could go home. I could sense a headache developing. I didn't want to burn through an Imitrex so I let it ride to make sure the pain I was feeling was the real deal. It wouldn't be until I was standing behind Jason in the sector before I knew it was. He unplugged and left the area while I quickly unpackaged an Imitrex spray and shot it into my nose, inhaling it deeply for the quickest relief possible. The relief never came.

I struggled through the next hour of steady but routine traffic, trying to focus through the sharp pain behind my left eye while desperately waiting for the headache to abate. It had been many years since I was in the sector with a headache such as this and I'd hoped to never again find myself in this position but there I was.

The headache finally began to subside an hour later. I finished out my time in the sector and went on break for the rest of the night when Harrold got me out at 2:10.

I found an open couch in the break-room and laid down but I was awoken by another headache around 3:10. This can't be I thought to myself! I struggled to put my shoes on and find my badge in the dark then made my way down to my locker where I had another Imitrex waiting for me. I quickly took it in deeply then headed for the bathroom by the lockers and sat on a chair with the door locked behind me waiting for the Imitrex to kick in, but just like the last time, it was a no-show. I rocked and quietly moaned while the headache took its toll on me. I'd remain there for an hour before collecting myself enough to go back to the break-room and gather my things.

Once I got back to the couch I laid down and immediately fell asleep only to wake to the beginnings of another headache not more than 30 minutes later. Just unreal! Why won't they stop?! I had no more meds and this headache was building. I left to go to my car and the sub-zero temps of our coldest night of the winter so far to ride it out there. The pain contorting my head at times with its intense and unrelenting jabs. I just wanted out of the building and away from anybody who could see me in this condition.

I left the parking lot a few minutes early at 5:25 and made my way back home. I called Tammy, crying on the phone to her that I couldn't do this anymore. I was at my breaking point! My eyes were bleary with tears. She would be waiting for me when I got home.

I got onto Highway 50 and cursed God like I've never cursed him before. I screamed so fucking loud at him for allowing this to happen to me and for quite likely even taking glee in seeing me suffer. I didn't try to make any deals with him for the pain to stop. I was a mess and emotionally out of control. I cursed him for all of the atrocities he presided over in the Old Testament, something I'd been in a discussion about on a forum the previous day. It wasn't pretty and by the time I was done yelling at him, I could tell that my voice was hoarse. I was spent but I was still in pain. In a moment of clarity not far from home I realized how selfish I was and I began to thank him for the countless blessings in my life and to please excuse me for all I'd said.

I got home and Tammy was at the back door waiting to guide me up to my room. Tears streaming down my face and shaking from what I'd been through and was still in the middle of. She's seen me in bad shape before but not like this. She got me to the edge of the bed and adjusted my oxygen mask over my face. I was in complete agony, rocking in pain and moaning. It would be more than 30 minutes before I'd begin to experience some relief.

I told Tammy that I can't go back to work if this is going to happen again. It's not worth it. I'll retire today if necessary. We can manage. I made a comment to a friend a few years ago about retirement and that my headaches would probably be what decides it for me. I hope those words aren't prophetic.

Saturday, January 3, 2015

Cluster Headaches

I'm in the throes of my worst cluster headache phase ever. If you're unfamiliar with what a cluster headache is this video will give you a very good idea. This, at times, is my reality.

Cluster headaches, also referred to as suicide headaches have been described as the worst pain known to man. They're worse than a migraine or childbirth or a severed limb. If you've ever had an ice-cream headache where there's a terrific pain behind one eye for 20 seconds, you have a bit of an appreciation for what a cluster headache feels like except the pain lasts anywhere from 15 minutes to 3 hours. They're called cluster headaches because they come in clusters. In my case, they typically last 4 weeks and during those 4 weeks, I'll usually get only 1-2 headaches each week provided my doses of prednisone are doing their part to keep them at bay. After the headache phase has passed I'll often be free of them for anywhere between 12-20 months.

I'm not sure what to make of this current phase of headaches. They began 4 months ago in early September and have stopped and restarted twice since then. I've experienced 2 headache phases back to back before (separated by a couple weeks or a month) but never 3 phases, one after the other such as now.

When the headaches first appear, I'll begin taking prednisone as a prophylactic which is usually quite helpful but there will still be breakthrough headaches that I'll need to treat with a 20 mg Imitrex nasal spray. The amount of prednisone I use depends on the severity of the cycle. Typically, I can get by with 40mg a day but currently, I'm taking 70mg and it's still not enough. I'm still getting at least 2 headaches per day even at this level and it's left me so exhausted.

I'm feeling desperate as I write this, not sure what to do, wanting to just live my normal life but unable to with this monster living inside my head and wondering when will it make its next appearance. Will I be able to discreetly take an Imitrex spray if I'm in the sector and will it work fast enough to abort the headache so I can confidently do my job? The amount of time I'd need to take off from work to deal with the headaches is more than I have available to me (unless I simply retire) so I keep the fact that I'm in a headache phase to myself.

I'm in a very small minority of people who are affected by these headaches; I'm 1 in 1000. They first began for me at 17. I recall being in school and having an intense pain behind one eye that would only last 15 minutes back then but it would come out of nowhere and worry me. I'd wonder what in the world was that and why is this happening? In a month they'd be gone and it wouldn't be until I was in the Navy before I'd experience them again. I'd eventually receive a proper diagnosis in the early '90s and given prednisone and Imitrex to help manage them. Prior to that, I was on my own to just deal with the pain, meaning, I had no help at all. They were very upsetting especially since I had to maintain my medical at work in order to continue to keep my job. I've spent more breaks than I care to admit locked away in the privacy of a stall in the men's room praying to get it together before being paged back to work.

Doctors know little about what causes cluster headaches because there's been so little money directed toward the study of them. Pharmaceutical companies are reluctant to expend resources developing drugs to treat them because of how few people would benefit. Without enough people to make it worth their while and provide a recovery of their investment, I understand why there's very little research being done about them.

Tammy was reading online about the benefits of psychedelic drugs such as psilocybin mushrooms and LSD in stopping cluster headache attacks. I'm desperate for relief as I write this and would no doubt entertain that avenue for help but I'll need to wait until I'm retired. I've already pushed enough on the boundaries of what's permissible.

The prednisone leaves me feeling edgy and anxious but it's also a godsend. I would simply like to get through these next few weeks and come out the other side headache-free and then go from there.

The lure of retirement has never been stronger for me.