2 Hours With ME, and Dysautonomia: May 12th, International ME/CFS Awareness Day

I called Rhiannon, a touch of panic in my tone of voice.

I have screwed up. She made me a power smoothie before she left for shopping, and I drank it too fast.

“I didn’t even drink the whole thing, only half!” I explained.

Now, the icy drink sits in my stomach, and its chill spreads throughout my body. I have gone from warm to cold to shivering to teeth chattering to shaking all over.

It is 70 degrees outside. Two hours ago I was sitting out in the warm sun, lightly dressed. Now, I have my winter coat and fuzzy boots on, and I have hypothermia.

Most people don’t know that many of us with ME/CFS suffer from some form of dysautonomias. These are malfunctions of our autonomic nervous system – things that our bodies should handle automatically. These can affect many parts of our body. For some it affects how our body regulates – or fails to regulate – our body temperature.

Some of us also have muscle wasting or atrophy.

I have lost too much weight; most of my muscle mass, and I am struggling not to lose any more. At a hundred ten pounds, I cannot afford to.

And I cannot afford to be in hypothermia.

The shivering and shaking of my muscles is using up the valuable nutrients and energy of the high protein, RX, smoothie I just took in. I need every calorie I can consume, and every ounce of energy that I can hold on to.

Besides which, hypothermia is not a good condition for my struggling body, nor very pleasant.

I tell Rhiannon I have to get in the shower. This is beyond what a heating pad will fix.

I don’t like to shower when no one else is home. My blood pressure tanks regularly (and by “tanks” I mean 82/47, for instance). It would not do to pass out in the tub. But it’s the only thing I know to do.

Dysautonomia can also affect our blood pressure and even the amount of blood in our body – our blood volume – making both too low. This results in conditions such as Neurally Mediated Hypotension (NMH), POTS (Postural Orthostatic Tachycardia Syndrome) or OI (Orthostatic Intolerance).

During a NMH episode, the blood pressure can drop very low, often very fast, and fainting can occur. Usually, at the same time, the pulse rate goes up, putting the heart into tachycardia. There are a several different medications for NMH, POTS, and other blood pressure related dysautonomias, but they can come with some very nasty side effects.

Climbing in, I seal the shower curtain, anxious to keep every bit of warmth inside. I sit on my shower stool. I hate it, but it is necessary. I’m too weak and in too much pain to take a shower standing up.

Many of us go days or sometimes even weeks without a shower. Taking a shower or bath uses up an incredible amount of energy. Some of us cannot bathe ourselves at all anymore.

My skin is cold to the touch, cold and clammy like that of a corpse. I huddle over my legs as the hot, hot, water runs over my body.

It seems to take forever before I stop shaking enough that I can slowly wash my hair. It was certainly in need of a wash.

After 37 minutes, the hot water is running out. I’m still not sure I’m warmed up enough. I have no choice but to get out.

The skin on my thighs, on my butt, and arms, is still cool to the touch, but not as cold as it was.

One aspect of having NMH is having very poor circulation to the limbs and skin.

Emerging from the shower, I wrap tightly in a thick towel. I sit on the stool, with my head in my hands for 10 long minutes. The blood pounds in my head, and I am breathing hard.

I am dizzy and exhausted, drained and in pain. but I think I am starting to be warm again.

Too tired to move, I reach for my fone, and dictate this post, still wrapped in my towel, still sitting on the shower stool, head resting wearily on folded arms.

Now the question is, am I too warm? I listen intently to the signals coming from my body.

It has forgotten how to regulate itself. Up and down it goes: fevers, chills, sweats,  night sweats that go on all night long…

Like so many, I can’t go out on summer days when it’s over 80 because I overheat and get a fever far too fast. Getting in a car that has sat in the Sun can cause an instant fever – and an instant crash.

In winter I must bundle up extra warm against the cold.

And it seems that even when it’s 70, I must drink my protein smoothie either slowly, or on the heating pad. I felt hot when I started drinking it today.

Sure didn’t take much to change that.

These are the things that daily life with ME/CFS is made of…

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Lightbulb Moments: Topamax, Meds, Starvation and Adrenal Issues

The past few days have seen two important “lightbulb” moments happen for me, which I’m sharing here because I know many of my fellow patients are facing similar problems and on similar meds…

The ER Visit The Wasn’t:

Late yesterday afternoon, I started feeling decidely “off,” even for me. I was brewing a hormonal migraine, having an adrenaline dump, and was very shaky… and then I got very, very sleepy. Not, “I feel like I should take a nap” sleepy, but, “I’m sitting up in bed trying to drink my protein shake and I keep nodding off uncontrollably, over & over again” sleepy.

I haven’t taken naps in the daylight hours for several years, although I have lots of laying down rests, so as the hours passed, and this continued, it started to get a bit lot scary. Especially after I squirelled a piece of my precious Ultimate Lemon Merinque Pie out of Rhiannon, and then fell asleep while lifting a spoonful to my mouth!

I couldn’t think straight (or see straight), of course, but was trying to, and the thing that we’d last done – added topamax to my already long list of meds – was what came to mind.

I had felt remarkedly good, for me, during the day, and had just started to increase the Topamax, splitting the dose, taking 25 mg when I woke up & 50 mg at bed

Topamax carries some serious warnings, and one of them is for metabolic acidosis, which can cause coma & death, so if that was the culprit, I needed to know it, and get to the hospital.

I think I fell asleep at least a dozen times reading through the prescribers info packet again, detailing Topamax’s impact on the body, and what exactly metabolic acidosis was. It talks a lot about changes in consciousness being a warning sign.

But I decided I didn’t have the symptoms, and I’ll be damned if I’ll put myself though an ER visit for anything less than a broken bone or life threatening emergency!

Belatedly, we thought to check my BP, and it was quite low, which told me I needed Florinef (fludrocortisone). I had noticed I felt better when up & walking, but sit me down & I was out.

As the evening wore on, I seemed to be doing a bit better. I decided to sleep it off, and gave Rhiannon instructions to wake me up & check my BP, and if I didn’t wake up, to call 911. She was very, very worried, for which I am very, very sorry.

I woke up when her hand turned the knob on my door, as she came in to check on me, and the lightbulb went off.

All the pieces of the puzzle fit together:

  • Telling the CNP at my LLMD’s office that the topamax made me very sleepy & goofy & her starting to say, “But it shouldn’t…”
  • Starting to take 25mg earlier in the evening & suddenly finding myself more awake rather than sleepy, as my body got used to it.
  • Waking up over & over the night before this, at every little sound, all night long.
  • The fact that other meds in the same class (Lyrica, gabapentin), which are supposed to make you sleepy, do not make me sleepy, but are/were taken in the daytime.
  • That word “insomnia” in the side effects list, which was off-set by the ambien, so I had been sleeping, but not deeply.

As a person with ME/CFS, I know that meds & I do not mix the same way that they do for healthy people.

But, we’ve had so much going on that I didn’t stop to check how Topamax affects other patients like me. I did at 6am this morning, and sure enough, ME/CFS patients all take Topamax in the morning and afternoon, NOT at night as I was instructed to. The prescribers info states if at 75 mg (the “step” I am at) to take 25mg in the morning & 50mg at bedtime if taking it for migraines.

I think what happened was a combination of: the topamax disrupting my normal sleep patterns, as evidenced by the very light state of sleep I had been in the last few nights; the klonopin I took to ward off the hormonal migraine & adrenaline dump; the morning topamax which had kept me happy & more active than usual all day wore off; the NMH (POTS) induced low BP.

I’m glad that I’m in tune enough with my body & fluent enough in the medical world of ME/CFS to have not freaked out & gone to the ER, or even called the doctor on call for my PCP, who would have told me to go to the ER.

An ER visit would have produced no answers, as the answer could only come from me knowing my own body & dissecting what it was telling me, and I would have been even more stressed out.

Understanding The Hunger, and Starvation

I wrote in my last post, Teetering, about The Hunger. The ravenous, give me food NOW or I WILL KILL YOU Hunger.

I had been atributing a lot of the symptoms that accompany The Hunger – the shakiness, weakness, etc, – to hypoglycemia. But I don’t think that is so.

I think it’s actually an adrenaline dump. I came to this conclusion in yesterday’s lightbulb moment, when I ignored the onset of the hunger pangs to go about my morning rituals of making tea, sending fb messages, feeding the dogs, etc.

I then found myself so starving that I felt quite certain I was going to die if I didn’t eat within 30 seconds. I am totally serious. I was shaking, my fingertips were tingling, I could feel the adrenaline coursing through my body, heartrate accelerating… fight or flight response, although, in this case, there was no one to fight, but I was actually feeling fear I was gonna die if I didn’t eat right that moment.

My body seems to have entered some kind of primitive survival mode. It’s realized there is no more easily scavangable protein (muscle) left, and it cannot cannibalize itself any more without dire consequences. That 5 precious pounds I lost in the last month turned a corner of some sort.

Understanding Starvation and Survival

Now, it really is, to my body, eat or die, and it’s letting me know that, loud and clear. These adrenaline dumps are not fun, but they do help me understand how the earliest people must have felt, and how starving people must feel even today.

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I understand more clearly why UN & NGO aid trucks are attacked by starving villagers. Why villagers follow along, picking up every last spilled kernal of grain.

It’s very hard to explain this. When the adrenaline dump happens, your body enters that most primitive, fight or flight state – your senses are heightened, you feel the rush of it down your arms & legs, fingertips & lips become tingly, you feel shaky, and often, what would seem unreasonably angry, afraid, or aggressive.

It is a very primitive state of mind, and all thoughts of cooperation, of common sense, even, are very remote, indeed, as the adrenaline-fueled brain struggles to obtain the goal: food. You are not particularily rational, and you can’t help it.

I cannot help but feel deep compassion for those for whom this is not new, but has been an everyday occurance, often for their whole lives, like this woman in Niger. She follows the porters who bring the grain to market, and picks up the kernals that spill to feed her children.
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I cannot possibly imagine how difficult her life is, and give great thanks that for me, the savagely hungry beast could be fed within moments, and the adrenaline dump subsided. I wish it were as easy to feed the rest of those as hungry.

Teetering


For some time now, since the “protein wasting,” also called muscle wasting, and unintentional, major weight loss started, two years ago or so, we’ve been refering to my overall health status as “precariously balanced.”

When I say “we,” I don’t just mean Rhiannon & I, but also, my doctors. We are a team, working collaboratively to keep me alive & as functional as possible.

But my body is precariously balanced, like a scale or these stones, and every decision, whether to add meds, subtract meds, change my diet or supplements, had to be figured into how it would impact the overall balance of my body.

So precarious is the balance, there is no room for error anymore.

The two most important factors became:

  • Stop the weight loss and the muscle wasting. This is likely, at least in part, because of the adrenal exhaustion. The body tries to save energy by shutting down digestion, and scavaging from muscle, which releases all sorts of toxins, as well as being generally disconcerting.
  • Don’t stress out, not over anything, since my adrenals are already exhausted, and we didn’t want them to get worse.

Over the last two months, however, all hell broke out in our life, and the balance is really teetering.

The re-cap, for those who missed it:

First, adrenal issues became worse, my mom moved and my shoulder disintegrated (SLAP tear – a Very Bad Thing). Then, Rhiannon’s father became critically ill, and after a week of complications, he passed away. I made a decision to take Rhiannon to Ohio (could hardly have been more stressful – thank goodness for the loving support of our friend, Kathy, with whom we stayed) knowing full well the ramifications for my body would not be good, and it could “push me over the edge.”

Since we returned, I’ve been resting, resting, resting. Eating, a lot. But also having disturbing, and sometimes, frightening, new symptoms, that have led to multiple doctor visits & consultations.

Here’s where I stand (err, lay):

  • Most disconcerting, I have lost 5 very precious pounds since my visit with my PCP 4 weeks ago, despite taking our blender & “medical shake” mix & assorted edibles to Ohio, and eating a fair amount at Kathy’s home.
  • New symptoms include episodes of extreme weakness & shakiness, often with trembling.
  • My brain tends to go into shut-down mode when this happens, and I get what Rhiannon calls the “lost puppy look.” If we are out (have had to go out for multiple doctor visits plus groceries, etc) she will take me by the arm & guide me out of the store. I have limited comprehension when this happens, way beyond brain fog. This is not entirely new. What is new is the quickness with which it happens, after just moments on my feet.
  • Something has definitely tilted in my adrenal system. I seem to respond to even tiny annoyances with a dump of adrenaline that induces the fight/flight reaction – usually, fight. In other words, I find myself getting really angry a lot over stupid shit that wouldn’t have bothered me before.
  • There is also The Hunger. The ravenous, give me food NOW or I WILL KILL YOU Hunger. This is certainly very, very new, since a month ago I was still forcing myself to eat. The Hunger comes on very fast, demanding to be satisfied immediately. It’s a very bizarre feeling. I’m craving sugar, salt, carbs, meat… and if The Hunger is demanding to be satisfied, there’s not much I can do to stop myself from stuffing my mouth with whatever’s easiest. Rhiannon has hidden the chocolate & sugary foods, since they aren’t good for me, and just feed the yeast (candida).

What my medical team thinks:

  • Knowing that I was in adrenal exhaustion before all this happened, and being very tuned into my body, I became very concerned that I was teetering on the edge of adrenal insufficiancy. Many of the symptoms I’ve been having are very typical of that. My medical team agreed.
  • The biggest concern with adrenal issues is adrenal crisis, which can be life threatening, and develop quite suddenly. Rhiannon has instructions on when to call 911 or take me to the ER, but hopefully we’ve headed that off.
  • Hypoglycemia (low blood sugar) is also a concern, and I had this as a teenager. It could account for some of the shakiness & trembling.

What we’re doing:

  • Many labs were drawn yesterday. I’m having a lot of bruising, so am concerned the leukopenia is back. Who knows what else will show up.
  • My PCP prescribed a glucometer (those things diabetics use to test their blood sugar) and wants me to check mine several times a day to watch for hypoglycemia.
  • My cortef (hydrocortisone), which I started on only a month ago to treat the adrenal exhaustion, originally at 5mg in the morning & 2.5mg in the afternoon, has been doubled. This is not a large dose. My adrenals should be making cortisol (the body’s equivilant) but they are not. This dose is just to replace what is missing, as cortisol is essential for the functioning of the human body. I definitely feel better on a higher dose.
  • I had been taking florinef (fludrocortisone) only as needed, a half tab every 10 days or so, but until my body stabilizes, I need more. This is to treat Neurally Mediated Hypotension (NMH), aka POTS. It is commonly seen in both ME/CFS patients as well as patients with adrenal issues, and is associated with very low blood volume.
  • I’ve started monitoring my protein & calorie intake again with an app on my phone. It has a goal weight for me as well as my current weight, and tells me how many calories I need to eat to gain weight. It’s pretty cool – even has a barcode scanner.
  • I started on Topamax a month ago at 25mg for a week, then 50mg for 3 weeks, always at night. This is the one & only thing we hadn’t tried for migraines, and we hadn’t tried it because it can cause weight loss in some patients. But it does seem to be helping with the number of migraines & their intensity, so we’re sticking with it, and bumping me up to 75 mg, the level most patients need to see real improvement in migraines. Some need much more. It makes me very sleepy & incredibly loopy, much to Rhiannon & Ben’s amusement.

Mostly, I’m just resting, staying cool, well hydrated, eating a lot, meditating & deep breathing to reduce stress, and trying to relax & let my body regain its delicate balance. It’s going to take a while, perhaps a long while.

My shoulder still has to be dealt with, but not now, I can’t take the stress, whether of surgery or going out to see the orthopedist or having the MRI. So I’m dealing with the pain, which is pretty bad, hoping that the “sub-chondral loosency” that showed on the xray, and can mean the bone is getting necrotic, is not getting worse. I’ve already had one necrotic bone, so it does need attention as soon as I can safely go out.

Deep breathing. Not thinking about it.
Remembering how many friends & family members are out there showering me with Love and good energy…

…thank you!