So, is everyone surviving the holidays?

I’m making it a goal to NOT be hospitalized or require any emergency services this December, as the past two years haven’t been very kind to me. First a ridiculous bartonella flare, then almost going into probiotic-induced septic shock… Always within the week closest to my family celebrating Christmas! Well! I’d like to be able to fully enjoy my holiday season, and not have to spend it recovering from an exacerbation! I think I could probably handle a minor infection now, if it passed my way, but it still wouldn’t be without consequence and it’s something I want to avoid if at all possible. Family members have colds and sinus infections, but I have face masks! I joke about drawing hearts on them to make them more stylish. If Japan can do it, why can’t I?

So that Lyme flare got pretty bad. My muscles twitched constantly, and I soon started getting the internal tremor–the sensation that your entire body is vibrating, and that’s a Lyme symptom I haven’t had in a long while. I experienced severe muscle weakness in my legs for several days in a row and was wheelchair bound most of the time, even though using it was almost impossible. (I may or may not have mentioned, but I use a transport wheelchair instead of a normal self-propelled wheelchair. It doesn’t have wheels on the sides, so I self-propel with my legs, which are stronger than my arms because I don’t use them as much… That probably makes little sense, but when you have M.E., the muscles you don’t use very often are actually the strongest ones, and the ones you use the most become the weakest.) I remember starting to become concerned about it, but as the flare lifted, so did all the neurological quirks. A few days ago I went to the store without any assistance from mobility scooter or even a cane–a stark contrast to the previous week! My cognitive abilities have been poorer than usual, but these things go in cycles (every three weeks, remember?) so I may just be in a poor-brain stage. Since the flare though, I’ve had an increasing amount of headaches… I’m not sure if this is a three-weeks-of-headaches thing happening, or if it’s because of me not treating the Lyme, or what, but if it doesn’t lift after I begin specific Lyme treatment, I shall need to see a neurologist. Or perhaps I’ll just ask my LLMD next week when I speak to him, and see if he thinks I should go now…

It’ll be hard to decipher what is what, since I KNOW my headaches are going to explode once I start Tindamax next month. I told my primary doctor today about everything, and she’s excited about me starting it because of the recent in-vitro research that showed Tindamax kills up to 90% of both round (cyst) and normal (spirochete) forms of the Lyme bacteria. She also armed me with a new bottle of Lortab, so I’ll be ready for the insufferable headaches.

I have to write about a small bit of worry I have, though… On the 5th of December I got a severe headache, and that day I awoke with a bump on my finger. This is usually something I’ve associated with my bartonella flares, in the past… Then on the 10th, I got another bad headache, but I’m not sure if there’s any determinable pattern because that’s also the day I started M.E.-flaring from the trip to the store two days prior. :\ Could these finger bumps be Lyme, instead? And I HAVE been a tad more irritable, but again, nothing that screams bartonella at me… I’m just very wary of anything forming a pattern that would suggest it may not be disappearing afterall. I sincerely hope it’s just other factors. I’ll know as time passes whether or not things are being reliable enough to consider a threat.

Well, that’s all for my update right now, though I’m sure there’s more to be said. Oh, but I did update my picture on the right of the page. :)

Take care, my dears.

Keep going. No matter what you do, no matter how many times you screw up and think to yourself “there’s no point to carry on,” no matter how many people tell you that you can’t do it–keep going. Don’t quit. Don’t quit, because a month from now you’ll be that much closer to your goal than you are now. Yesterday you said tomrorow. Make today count.”

a rainbow at night

Letting go of society’s expectations, symptom recaps, and improvement with bartonella.

Despite the fact that my brain has been functioning a lot better recently, I haven’t much felt like updating. Completely the opposite of several weeks back, when I couldn’t think to save my soul but desperately had things to say! I’m learning a new language, so most of my spare brain energy has been going into that. It will also help me decide if I may be able to attempt finishing my degree come next August. If I cannot, however, I think I’d be okay with just letting it go. Afterall, I do have at least one degree–even if it’s not what I set out for–and my health is too precious to waste on going to university to finish a degree I may never be able to use, and which may worsen me trying to complete.
I have fought too hard to get to this point, and I don’t want what society says I should be doing to dictate what would actually be best for me. If I do reach the point where I am finally stable, then I would love to try and finish and become a researcher, or at the very least, a counselor. But that would take a lot of trust in the fact that I’d still be stable and healthy enough to actually do those things after my degree was finished. If I never again become that well, wouldn’t it be better to attempt some type of small job with the degree I already have, than use up everything I’ve gained in pursuit of something that won’t do me any good? But even that would require more health than making sure I don’t starve on my own. If I only improve enough to take care of my basic needs, I will be thankful.

Illness has taught me my worth is not defined by how much money I make, or what level of degree I have, or what job I have (if any, if ever). I am worthy because I am here, because I exist.

Randomly: I’ve gotten several followers the past few weeks from all over the world–oh, the power of the internet is amazing!

Okay, let’s see. From the 16th-23rd I was having a typical Lyme flare… How is it possible that this pattern hasn’t changed, practically since the time I got it? Is it really THAT predictable? But yes, severe headache and neuropathy issues, and I also recall being more cognitively impaired during then, as well as thirsty–again, all typical. What’s not-so-typical is that I’ve had nasal allergies the past week. I can’t tell if it’s eosinophilia related (hopefully not) or something I’m exposed to in my environment. It’s not like I go outside or even open the windows lately, with it being so cold, but either way, since I’m not allergic to anything except chamomile, this is puzzling! I’m definitely reacting to something–I just don’t know if it’s internal or external. I have Astelin, until I figure out what’s going on.

I felt it’d be okay to restart my stretching routine a couple weeks ago, so every other day I get some exercise! No relapse, yet. I’ve been able to cook a lot lately, also, which is encouraging. It’s still difficult and frustrating because of my muscles and their tendency to fail the day after using them, but hopefully that will improve more soon. If it got worse when I got these infections, surely it will improve as I continue to treat them.

Dare I say that the bartonella eradication is going as planned? The Bactrim is amazing, and I think the bart is.. well, it might be gone, or at least, finally beat into submission?! The protocol is to continue treatment two months past the cessation of symptoms, and I talk to my Lyme specialist next month, so we’ll see what he says. Then I can start Tindamax to finally treat the Lyme! The antibiotics I’m on now treat it, but only very minorly–just enough to keep it from taking over. I’ll be stopping the Rifampin since I can’t take it with Tindamax, but I may stay on a maintanence dose of the Bactrim, since bartonella has a crazy-high rate of relapse, and I do not want to go through this again. I feel I’m probably being unrealistic that I should never face it again, with the way my immune system is, but… For now I’d really like to enjoy my improvement.

Three days ago I started my Zoloft to ward off PMDD and control any outstanding OCD symptoms. I don’t think I was having PMDD yet, but since I was supposed to have taken it again in September, it’s bound to show up soon. My OCD has been flaring and I’ve been hungry all the time, so I know some brain chemicals were out of alignment. I last took it in June, I think, and it was by far too late then!

The past three weeks I’ve had this odd collection of symptoms that fit the description of pelvic floor dysfunction–not saying I have that, but symptom wise, that’s what’s going on. All of my muscles there would randomly tense and were very uncoordinated, no doubt the result of nervous system disruption. :\ I have gotten this on and off over the years, for a day or two at a time, but never three weeks. It’s mostly gone away now. My menses started two days ago so they’re somewhat on schedule again, with every 45 days being my usual. However, if things continue to be.. bizarre, I may see myself going to yet another doctor, so it’s worth keeping track of, yes? I’ve been slightly anemic even before this, and yesterday I had the most random craving for crushed ice (a further sign), so it’s probably no wonder I have been beyond exhausted and out of breath with every move I make. (Anyone else start singing The Police just then? No? Okay.)

A recent study found a correlation between high doses of Vitamin C and a reduction in the rate/increase of heart failure symptoms. Granted it’s just a correlation, but now I feel even greater about taking two tablets per day since last year!

Til next time

a rainbow at night

Important discovery: Intracranial hypotension/hypovolemia.

What is it, time for me to see how many random ailments I can rack up within the shortest time frame?

After research, I’m confident enough to say I’ve figured out this very peculiar headache I’ve gotten the past few days. I think I know now why the headache I got two days ago didn’t respond to meds like they usually do. Because it happened so close to my flare days, and was just as painful as they usually are, I didn’t think much of it. But yesterday, when it persisted, I really, really thought something else was going on.

Yesterday, I felt fabulous. Finally better! However, my head continued to ache when I sat up, and got extremely painful when I stood up. As long as I was lying down it was barely noticeable. It hurt on the top of my head, a sensation I’m not entirely unaccustomed to–I sometimes get this with my occipital neuralgia attacks. But this was different. I tend to say it feels like there’s not enough oxygen/blood getting to my brain, because it’s so obviously a pressure problem… But what I didn’t realize, was that the pressure in your head can be something seperate entirely! These orthostatic headaches usually happen to me when my overall blood pressure is low, and you can literally feel all the blood come rushing away from your head. But as I said, yesterday I was fine, with the exception of my head hurting… I knew there had to be a name and an explanation for this, so last night I set out to find what it was. I couldn’t help myself, being a researcher at heart.

WELL. It turns out, I am most definitely suffering from low intracranial pressure, thus causing a headache because the decreased pressure isn’t enough to keep my brain properly suspended, resulting in it giving in to gravity, if you will, and literally pressing against/into the hole at the bottom of the skull (known as the foramen magnum), where the brain and spinal cord meet. It makes perfect sense as the why it hurts so much, yes?!?

“Headache resulting from the removal of CSF with subsequent decreases in intracranial pressure (ICP) is a well-known phenomenon.  This most commonly occurs after lumbar puncture (LP), but may occur spontaneously or as a result of trauma.  The headache is usually worsened by sitting or standing upright and improves or disappears with lying flat.  Pain is steady, often described as pulling, and occurs most commonly in the vertex [top of the head] or occipital [back of the head near the neck] regions.  Nausea is common and transient 3rd or 6th nerve palsies have been reported.  Nearly all of these headaches will resolve spontaneously over several days.  Bed rest and fluids are recommended but have not been conclusively shown to speed recovery.  In cases occurring after LP that do not resolve with conservative management, autologous blood patching in the epidural space is indicated.”

I guess even the random nausea that I mentioned last post also makes sense, now.

This is the same type of headache I got the day after my first neurologist visit, where I said, “It’d be risky to get a spinal tap because I already get symptoms of the type of headache you get after them, the ones that are supposed to tell you whether or not you need a blood patch to stop a CSF leak. If I get these headaches anyway, how am I supposed to tell whether or not I’d need a patch?!” Not having had any spinal taps, I figured there had to be some other explanation for the headaches…but it turns out you can get decreased intracranial pressure without having had a tap.

Interesting bit of information: Remember last post when I said my eyes haven’t twitched since April?  Well that time in April was the day after my neurologist visit, the last time I had this intracranial headache! I was so relieved to find that out, because it probably means the extreme twitching I got those three days was instead a neurological quirk from the nerve irritation and not a bug flaring, this time! :D (It also explains why I’ve had so much trouble focusing my eyes the past few days–they seem to want to go all over the page, which is yet another symptom of this low intracranial pressure.)

It also, and perhaps most importantly, explains another strange phenomenon I’ve had the past several months: Sometimes when I take my Topamax, it actually GIVES me a headache. I found out last night that.. Topamax can decrease intracranial pressure. :((( I halfway wonder, now, since I started it in March after I got out of the hospital, if this is why I’m having these issues at all! Since I’ve been wanting to quit it for months anyway, I am promptly weaning myself off of it–which, please, I wouldn’t recommend for people who don’t know what they’re doing!–but because of my medication sensitivity, I only ever got up to 25mg. I’ll take half for one week, and then cut it into fourths another week, to be sure. Hopefully my migraines won’t relapse, but even if they do, I’ll have to find another treatment. I still have Imitrex in case I get any of those semi-dangerous retinal migraines.

I’m kind of horrified, but also kind of excited by this. First off, I know what it is now, so I can properly treat it. (Read as: I will lie down instead of being stubborn, before it gets to the severe stage!) The only thing I need to figure out now is…why are they happening? Is it truly the Topamax? Or do I actually have some sort of cerebrospinal fluid leak? That would certainly need to be fixed… Do the infections aggravate it or is it just coincidental timing? I guess it wasn’t really coincidental this time, because it persisted even after the flare, which is what allowed me to notice something wasn’t right. I know I still have bugs to fight, but I’m semi-excited at the possibility of some of my more strange symptoms being potentially caused by something they can actually just go in, find, and FIX. Maybe some of my autonomic symptoms are being aggravated by this? Ha, is it strange to almost hope you have a cerebrospinal fluid leak?

Please note I NEVER recommend Wikipedia for health information, but once in a blue moon, their information is accurate:

“A spontaneous CSF leak, as opposed to traumatically caused CSF leaks, arises idiopathically. A loss of CSF greater than its rate of production leads to a decreased volume inside the skull known as intracranial hypotension (ICH). A CSF leak is most often characterized by a severe and disabling headache and a spectrum of various symptoms which occur as a result of ICH. These symptoms can include: dizziness, nausea, fatigue, a metallic taste in the mouth (indicative of a cranial leak), myoclonus, tinnitus, tingling in the limbs, and facial weakness, amongst others. A CT scan can identify the site of a cerebrospinal fluid leakage. Once identified, the leak can often be repaired by an epidural blood patch, an injection of the patient’s own blood at the site of the leak.

Some patients with CSF leak will develop headaches that begin in the afternoon. This is known as second-half-of-the-day headache. This may be the initial presentation of the CSF leak or appear after treatment, and likely indicates a slow CSF leak.”

The “second-half-of-the-day headache” really matches this so well, because I have woken up with no headaches, but the more I’m awake (i.e, the more I’m upright), the worse it gets. On the other hand, my infection flare headaches usually do the opposite and get better by the evening (and respond to medication–unlike these). And they feel more akin to a brain swelling than a lack-of-oxygen feeling.

I think I mentioned last post that I had one final trip to my good neurologist, and I can’t wait to bring this up incase he wants to order more tests to see if there’s anything that can be done. I’m so glad that I didn’t–for a multitude of reasons–get the spinal tap he wanted me to have back then: Goodness knows the problems that would have caused, if my pressure was already low!

Always learning, always learning.

a rainbow at night

[Edit, January 2012: Bittersweet, but it was apparently just the Topamax! I haven't had one of these episodes since stopping it.]