How Did This Happen?

Each day, I wake up & it’s the same, always the same:

Make tea. Eat a Larabar or Luna Bar. Must have padding in there. For what’s to come. The meds, and there are so many of them. They’re sneaky. You start out with just one, but then over time, more get added:

  • Lyrica:  Big-Pharma’s answer to FMS. It does help with the pain & complete lack of energy. Instead of 0% of my previous level of energy, I have 5%. Occasionally, 10%.
  • Synthroid & Cytomel, T3 & T4: Thyroid hormones for hypothyroidism.
  • Zantac: an antacid to help prevent a gastric bleed from all the meds, as well as “fix” the reflux.
  • Celebrex: an anti-inflammatory, a NSAID, for the arthritis, and it also helps, some, with the migraines. It’s the bad boy for causing gastric bleeds & the primary reason I need the Zantac.
  • Enderal LA: a blood pressure med. To help with the migraines, and for BP stabilization.
  • Oxycodone: for the never-ending pain.
  • Zoloft: because every person diagnosed with CFS/FMS in America takes some type of antidepressant, even though we’re not depressed. Something to do with faulty brain chemistry – I used to remember the reasoning. I’m trusting myself that I did at one point remember the whole business of serotonin and thought it was an okay thing to do.  I did, with doctor approval, cut my dose in half over the last year. (And if you’ve seen the ads for Cymbalta, the latest of Big-Pharma’s children for CFS/FMS, you might be asking why I’m not taking that. You really don’t want to ask that question.  Short answer: It nearly killed me. Twice.)

Swallow those, follow by

  • Wild Salmon Oil (my Omega 3- & 6-s)
  • Evening Primrose Oil (for PMS), taken now, first thing, with my bar breakfast, so I can take the bad boys:
  • Valcyte: the outrageously expensive anti-viral that we’re giving a trial to, though they carry risk. It’s “they” because the instructions are to  take 2 – 450mg tablets together, with a high fat meal. They are the riskiest of the bunch, multiple “black box” warnings. But, they’ve definitely helped with cognitive function. And I thought they were starting to help with the exhaustion, but then we hit a little bump in the road. A “flare”, as these “bumps” are called. Personally, I think the Epstein-Barr Virus & Herpes varieties that reside in my body got wind of the fact there was a new sheriff in town, and are putting up a bit of a fight. 3 to 6 months, that’s what the Stanford study said, for the most effect to be felt. It’s been 2, 2 1/2 maybe.
  • Finish off with Zenpep: a combination of pancreatic enzymes, useful for digesting fat & protein when you’ve had your gallbladder removed and you have leaky gut syndrome and basically little proper gut function. (and does anyone besides me think Zenpep is the stupidest name ever?)

And I ask myself again… how did this happen?

I raised organic gardens, organic meat, looked to herbal medicine for answers.

I had my first child naturally, refusing meds the doctors wanted to give me because she was taking forever to make her way into the world, or meds for the pain or constant puking, because it was so important to do it naturally, for her sake as well as mine.

I was so turned off by the medical machine that I had my second child at home with a midwife, took herbs as treatment during my pregnancy & to stop the bleeding afterward… and yet, here I am. Swallowing pill after pill, just to squeek through the day.

Yes, we’ve tried stopping them all, or at least all that it’s safe to stop. Several times, actually. Not good. I always wind back up on them again. And I do reduce things, reduce dosages, consolidate two meds into one med, periodically. In the last year I’ve eliminated the methadone entirely (big YAY for me!), cut the florinef to a half tablet every couple weeks instead of a whole one daily, cut the zoloft dosage in half,  and consolidated the gabapentin & Lyrica into just Lyrica. But then we added the Celebrex, and then the Valcyte.

Most of the time, I just swallow my handfuls of meds without thought, other than to be sure everything is there and accounted for.

But once in a while, it comes creeping up from wherever it is I’ve stuffed it, the voice that screams at me:  “What the hell are you doing? You are all about the all-natural and organic! You wash your hair with organic shampoo, for goddess’ sake!”

But what other choice is there? To live constantly in bed instead of getting up and down out of bed repeatedly, and once a week or so managing a trip to town (with the help of additional meds, of course, to make sure I don’t shut down mentally while driving the car) ?

My ex-pain-management doctor used to end every visit with the same question:  “And are you sure, really certain, that the meds you’re taking right now are doing less harm than good? Are you sure they’re really helping?”  It wasn’t a rote thing, he looked at me very intently when he asked, and even though he asked it at every visit, it was always phrased just a little different, and he always expected a real, honest answer – there was no blowing off the question.  I liked that.

It’s a question I’ve remembered, and ask myself all the time. Am I really sure I need x, y,  and z? What’s the least amount of whatever I can take and still sleep through the night? What if I skip half of this tonight and see if it makes me more or less tired tomorrow?

There are what-if’s I try to stay away from:

  • “What if, when I was on the IV Rocphin for the Lyme, I’d kept up taking all those handfuls of complementary herbs, even though they were expensive as hell & made me want to puke?   I don’t know.
  • What if I had all the money in the world and could afford to go to one of the CFS/chronic Lyme clinics, and went through all their rotating rounds of antibiotics and thrice-weekly IV’s of vitamin and mineral and who knows what cocktails?  (That thought makes me want to puke… or maybe it’s just the salmon oil trying to come back up.)
  • What if I had stuck with the mainstream doctor instead of the LLMD (Lyme Literate MD) who put me on the IV for a year?  (I think I know the answer to that one, and the picture is an ugly one – the Lyme would have gone untreated for even longer and I’d have had more of the neurological decline I’ve read so much about, and it would not have been a good thing. )

A lot of I don’t know’s. But it’s good to contemplate these things occasionally. Ironically, this post was brought about by a discussion had through Facebook – a newly diagnosed woman, who was feeling very overwhelmed and isolated, was trying to decide on trying Lyrica. It was knowledge of the history of Lyrica and it’s predecessor, Neurontin, that got me thinking about how much I’ve learned about meds.

How much I never would have guessed I’d know.

Nor did I want to know.

But I do.

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Doctors Who Want Power Over

So I saw my neurologist yesterday. It was interesting. I’ve never liked her. I like her even less now.

I was scheduled to just get an Occipital Nerve Block (ONB), which is injections into the back of the head and side of the neck with a local anesthetic and a type of cortisone called betamethasone. They do one side at a time – ie. I had to pick which side was the most painful for her to inject into it. The idea is that the cortisone will decrease inflammation and irritation around the nerves because the nerves there – even though they’re on the back of the head – can cause headaches all the way to the front of the head – mine are usually centered on my eyebrows.

My first priority was to talk to her about the florinef, my discovery of it as a primary factor in the migraines, how I came to figure it out, my BP readings from 3 weeks, and the changes I made to my meds without anyone telling me to – stopping the florinef, and taking both the BP medicine she prescribed but also another BP medicine that I used to be on, in my attempt at getting the headaches under control.

She followed along as I described the events, and was fine with me stopping the florinef and I guess happy I figured it out – she said it made sense. But she wasn’t happy that I was taking more BP medicine than was prescribed. However, she did say my BP was still running higher than it should be and is likely contributing to the damned headache – I’ve had one constantly, non-stop, since January!

I told her I wanted to increase the BP medicine she had prescribed, and she was fine with that and wrote the RX.

She wasn’t happy when I told her I knew florinef can cause things like an enlarged heart, which I think it has (she said to see my PCP, who is out sick & I told her that – but she didn’t bother to take a listen or anything), and that I was worried about the increased intercranial pressure having caused an aneurysm. I mentioned I’d been researching my meds online and had seen this listed, and she replied “Well! That’s why we don’t go online, now isn’t it?!” Then insisted it could not cause an aneurysm.

She also insisted she’d never heard of Lyrica or neurontin causing incontinence – she wanted to know why I take small doses of each (they are nearly the same thing) instead of a larger dose of one. It’s listed as a side effect – but no one told me that and that’s another thing I had to figure out on my own.

Power. It’s all about power. She’s the type of doctor who wants to be in control of her patient, and she did not like it at all that I was one who actually has a brain and knows how to use it.

My other doctors are not like this – they see me as a partner in figuring out how to get me healthy and welcome my suggestions and discoveries.

After she did the nerve block (intensely painful), she came back in and asked me again why I’d decided to up the BP medicine without talking to a doctor. I explained that I had just seen her, the nurse-practitioner at my rhuematologist’s office, and my PCP, and yet no one had figured out that the getting-worse-daily, non-stop, life-altering, my-head-is-gonna-explode, intense migraines were in fact being made much, much worse by the florinef, which has side effects listed as severe headaches, the increased intercranial pressure, etc. And that I was feeling a little “miffed” at my doctors.

She just couldn’t get it.

I felt like someone was driving nails into my skull for months and yet none of my docs figured it out. I had to figure it out myself. And she couldn’t understand why I’d be a little “miffed.” It baffled her.

Still having the headache, BTW, but it’s definitely  much better since I stopped the florinef. I’ve even been able to turn the TV on and watch a little – hadn’t even turned it on for like nine months because it always triggered a migraine.

So, that’s how we left it – the first ONB is a test of sorts. It takes 3 – 5 days for the cortisone to have any effect. In the meantime, I hurt big time – my neck feels horrible and have had a headache/migraine all day. If I feel like it’s helped, then I go in to do the other side. And likely go in a week later and have the first side done again, up to four times a side. But she doesn’t think it will help.

I did have the ONB’s before, and I’m pretty sure they helped. But apparently, the longer you’ve been having headaches, the less likely they are to help. And I’ve been in a nearly continuous state of headache at some level for over a year, with frequent (ie. 3 – 4 times a week) migraines that increased to near daily migraines that don’t respond to much of anything.

We’ll see how it goes, I guess.

Maybe I’ll start looking for a headache clinic – apparently those exist in some places.

How did I learn that?

Online – that place she doesn’t want me to go!

“Now why don’t she write?” – July Events

Bet you’re wondering “Now why don’t she write?” (obscure reference to Dances with Wolves…)

Well, because it’s been a really excruciatingly painful, odd, weird, interesting, frightening, and ultimately enlightening, month.

I managed not to die of an aneurysm. Not to have a stroke. And not to have a heart attack.

I figured out what was causing most of my headache/migraine pain – after seeing three doctors who couldn’t figure it out, and likely in the nick of time right before I did have an aneurysm, stroke, or heart attack.

I’m not sure if there’s permanent heart damage yet.

As brief an explanation as I can come up with:

I started taking a little bitty yellow pill called florinef after being diagnosed with Neurally Mediated Hypotension, which is now apparently called POTS (Postural Orthostatic Tachycardia Syndrome) in about 1999, at John Hopkins. And I’ve been taking the little innocuous looking pill ever since.

POTS is essentially a situation where the body does not make enough blood, so you have low blood volume. The heart is supposed to respond when you stand up from a laying or sitting down position by increasing the circulation so it doesn’t pool in your lower body. If you don’t have enough blood, the body can’t respond fast enough, and you get dizzy, light headed, or can even pass out when you get up, or if you have to stand for a long time. It also contributes to fatigue, and is common in folks like me who have CFS (Chronic Fatigue Syndrome).

Florinef fixes the problem by making the body hold onto sodium (salt) at the expense of losing potassium, so you also have to take a potassium supplement. Florinef is officially a corticosteroid, but does not work like other steroids that reduce inflammation.

Apparently, at some point in the last year or so, when the migraines & bad headaches became first a couple days a week, then every day, then pretty much constant, I went into “remission” of the POTS. In other words, my body started to make enough blood, or possibly, as part of the aging process I started developing high blood pressure, so the POTS no longer mattered.

My docs put me on meds for high BP, but I continued to take the florinef. No, that doesn’t make much sense, but the florinef was to increase blood volume, not blood pressure. My BP usually measured over the last six months in the good to a little high range. But, as I decreased the amount of methadone I take (at 5mg and lowering it to 2.5mg right now!),  things started to get wacky, because methadone, like all narcotics, lowers the blood pressure.

So, two things happened at the same time, I think – I went into remission of the POTS, and the methadone stopped keeping my BP under control.

As a result, the headaches got worse… and worse… and worse… until one Saturday a couple weeks ago, when I was laying in bed trying not to scream because it felt simultaneously like someone was hammering nails into my head, and like my head was going to explode. The blood was pounding in my ears, and in the occipital groove in the back of the head. Suddenly it came to me that the problem was the florinef, and I staggered into the office to look up florinef online.

I found that florinef can cause “increased intercranial pressure” as well as headaches, and the “professional” version of the prescribing info stated that “severe headaches” could be a medical emergency, and it could also cause an enlarged heart due to the heart, being a muscle, having to work so damn hard if there’s too much blood, and muscles get bigger the harder they work.

I stopped the florinef. Immediately. And, slowly, the headaches have gotten better… and better… and better…

However, it’s not recommended to stop florinef suddenly, so I have been taking about a quarter of one every few days.

I’m pretty sure, given what I’ve learned about the body in the last two weeks, how it regulates blood pressure, etc., that I was very, very close to getting an aneurysm, or having a stroke.

Now the question is… do I have an enlarged heart?

It feels like I do. Because when I lay on my left side, I can feel the action of my heart like never before – feel each chamber as it contracts, feel the blood flowing through the big arteries in my chest. And you are not supposed to be able to feel that. It’s also hurt a little, mostly right after I stopped the florinef, but occasionally still, it’ll be a bit uncomfortable with every beat, for a while.

I have learned that an enlarged heart will go back to normal once the conditions causing it to enlarge are taken care of. And my BP and pulse rate are good now, in the low to perfect range, and I’m still taking my high BP meds.

I’ve also learned that it takes time – weeks, sometimes months – for blood pressure to stabilize. And sometimes years for an enlarged heart to return to normal.

Should I go to my cardiologist, who I haven’t seen in almost ten years?

Probably. But I’ve lost a lot of my faith in doctors. My doctors didn’t know that methadone causes your periods to stop, so for five years I worried about why I wasn’t having periods. The didn’t know that both Lyrica and Neurontin can cause incontinence when taken in higher doses. And apparently, they didn’t know florinef can kill you if you take it when you don’t need it. Granted, florinef is not something that’s prescribed very much, and they really don’t know too much about how it does what it does, but still… severe headaches and increased intercranial pressure and enlarged heart as side effects and no one, not my rheumatologist, neurologist, or PCP thought of that when I started with these migraines and told them I’d had a headache constantly since January?

I do plan on seeing my PCP (primary care practitioner)  soon, and explaining all this to her. She’s very open to learning new things. And I think she’ll likely order some heart tests. And, I also am scheduled to see my neurologist, who is really the one who should have known this, and she’s going to do some nerve blocks to see if we can get the remaining headache gone. And maybe some trigger point injections.

But my plan, come what may, is to get off as much of everything as I can.

If one little bitty yellow pill can come that close to killing me, what’s the rest doing that I don’t know about?