Saturday, June 26, 2010

Postprandial Hypotension

Alright folks. So today is a new one. Well, not BRAND new, but a recent development. Instead of my usual tachycardia, I seem to be experiencing bradycardia. My blood pressure is 91/58, pulse 67, my chest feels tight, it's harder than usual to breathe, and I feel like someone has my heart in their hands and is squeezing it just a little too tightly and too slowly. Fun times. Kinda feels like someone's got there hands around my neck squeezing a bit, too.

I'm so tired of all these rarish symptoms. It feels so uncomfortable, a bit scary even, and there's not likely anyone to call for help or reassurance who isn't likely to end up making one feel like a raving hypochodriac.

It seems that the trigger (aside from going of the oxymatrine supplement) is eating, which would likely make it something I believe is called "postprandial hypotension" but that is even more infuriating, as good food is one of the few things available to cheer me up. Sometimes I swear I wish I had a punching bag, I get so angry and feel so helpless and tired of all this.

I ended up not having to do the family thing at least. The person I was supposed to "help", though the truth is the help was going to be moral support, because I'm definitely not up to moving, and I would have just been uncomfortable, felt guilty, and probably ended up making myself good and sick-er by forcing myself to help. Hell, forcing myself to make the 40 minute drive may have done it, I've been so exhausted lately. Yes, another fun facet of this illness. The "but you don't look sick" phenomenon. I tried to feel out the possibility of cancelling yesterday, and found myself being attacked. I was told I was exaggerating how bad I felt, and that I was just lazy and all I wanted to do was lie in bed and watch TV and be online. Nevermind that I'm actually compelled to lie down by overwhelming exhaustion, or that I actually start to lose feeling in my feet if I even sit at my desktop PC for long, and sometimes my head begins to get cold, and my hands turn icy, or that I feel ill and my back will begin to hurt so much I can hardly breathe. Nevermind that it's taking me days lately to recover from the 40 minute trip North. Or that despite having to lie down frequently, I suffer from that "tired but wired" phenomenon and would go crazy without the distractions of Television and Laptop (what am I supposed to do, stare at the ceiling?)
I suppose I could take some solace in the fact that this accusation was likely made purely to spite me, but that almost makes it worse because this is a person I should be able to trust with my worst insecurities, burdens, weaknesses, and disappointments, and yet they use these as weapons against me, and for what?

Well, blessed sleep is creeping up and I'll be happy to go sink into its forgiving oblivion. Lest my heart leap back into my throat. (Can you tell I've been reading a novel that takes place in the Middle Ages, in England?)

Friday, June 25, 2010

Day 1 Cimetidine

Took my first dose yesterday, and I think it definitely interacted with some of my other night-time medications, as I seemed to feel extra woozy. Went to bed at a decent hour (for me, 2:30am) but woke up extremely tired at 10am. Went back to bed. Slept past noon, and was still so tired/groggy and it was such a huge battle to get out of bed, I decided to compromise by not going back to sleep, but staying in bed and trying to read. Managed that for a bit, and finally got up after around an hour or so, but already I'm feeling very tired and lusting after my bed...I have something important to do tomorrow, family stuff, so I think I may lay off this particular medication experiment for a couple of days until that's done with and recovered from, and then resume next week at half the dose. (Current dose was 400 mg 2x daily. Perhaps I took the 1st two doses too close together though?)

Re-read and read some more of the posts on the forums ( and saw some people definitely felt like they had a Herxheimer Reaction (healing crisis, dieoff symptoms, etc.) and that some people improved on a very low dose. The book I posted the link to earlier also says that improvement was reported by some people taking only a sliver of Cimetidine, so...

Well, back to bed for a nap, or whatever type of rest may come, because I will have to attempt to tidy up my bedroom, at least, for tomorrow, among other preparations...and besides feeling tired and drowsy, my Circulatory/Dysautonomic problems are rearing their ugly head, and being supine is the only remedy for that.
Which reminds me, my doctor mentioned that it remains to be seen whether those problems are permanent damage to the Autonomic Nervous System, or if they will go away if the virus is successfully treated. I truly hope it's the latter, because if not, I'm not sure there's much point in getting better, because those encompass most of what disables me currently...

Thursday, June 24, 2010

Doctor's Visit, Cimetidine vs. the Immune System

I've been trying to get around to posting since Monday, but it seems like the trip up to L.A. is taking more and more out of me lately.
I seem to spend days recovering my energy.
Anyhow, it went wonderfully. My doctor was a sweetheart, it didn't turn out as expensive as I'd feared, and I came away with a new treatment option.

Unfortunately, the trip up there took a bit out of me as well, plus with brain fog rising back up lately, I just couldn't concentrate on some very interesting info the doctor shared with me on what he thought of XMRV and some tests being done. I remember the info, I just can't seem to make it fit together, so I figure if I come across something related later on, it will probably make sense.

As for the "new" treatment, he suggested I try, of all things, Tagamet, aka cimetidine. Normally used as an antacid, it turns out cimetidine has been used off-label to modulate the immune system, specifically in the treatment of viruses that cause warts. The key word of course, being "viruses". (I can hardly believe I'd never heard this one before!)
But yes, I did some research, and my findings were quite interesting.

So my plan is to get back on the oxymatrine/herbal supplement I was taking (as I've realized that the brain fog began to get worse about the time I stopped it, and with a little prodding from the doc, that the aches & pains & fatigue and feverishness increased around the same time) keep taking the lamivudine (anti-viral commonly used in HIV & Hepatitis which has shown some effectiveness against strains of the Coxsackie B virus) and start the cimetidine. And once again, I will wait. And see.
And I will try and do it patiently. :)

Here are some links regarding Cimetidine and CFS/Viruses/Immune System Function. Also, I was quite interested to see that it has also been used as a treatment for such illnesses as PCOS (Polycystic Ovary Syndrome) Fibroids, Endometriosis, and other "estrogen dominant" disorders, as well as for Interstitial Cystitis (per Wikipedia, source cited). I'm curious to see as well, if it helps control my allergies (being a histamine blocker) and helps my stomach at all. (I also read a tidbit somewhere about it being good to take probiotics with an acid blocking medication for better effectiveness.) Very interesting stuff...

Tagamet on Wikipedia
(before you scoff, it has plenty of citations)

Tagamet and CFS

More info on Cimetidine
AboutMeCFS Forum - Tagamet

Sunday, June 20, 2010

A long one

Another holiday down. I made it through, not scott-free; got off my diet (which incidentally, I can't wait to be back on, although I couldn't help but indulge in one last biscuit!) and felt ill most of the day, which I pushed through. (Usually I need to sit in my recliner after I eat or I feel sick, it's all related to the Dysautonomia, not enough blood volume, blood gets diverted to stomach for digestion, or there's not enough to get there, which either leads to fatigue, possibly cold extremities, and tachycardia, or just plain feeling ill, or problems w/digestion and feeling sick. Worse when off the B.E.D. diet because regular food isn't as easy on the tummy; plus carbs & sugar raise blood sugar causing more ill feelings.)
Of course, couldn't get by without a little family dysfunction either. Suffice it to say I don't do well with being screamed at by someone who should be treating me with love and respect, especially after I've spent a couple hours trying not to get irritated about having to make sure the day revolves around Dad, not around anyone else. Another reason I'm dying to have my own family, just to have something go nicely and not need people who would ruin the fun to feel like I'm part of a family. Holidays and family mean so much more to me now that I've been sick for so long and it's constantly breaking my heart that even that seems to be out of my control. I'm not perfect, but at this point in time, with everything I've been through the last few years, I just can't seem to muster the serenity to not let my buttons be pushed, especially when someone acts selfishly and nonsensically and rubs salt in the wound called "life is NOT fair, and you really don't have control over anything you thought you would, even the closest people to you are never going to be there for you in the way you would like". Expectations. They're killer. Even worse if you're a writer at heart, and you thought in your head that the story had already been written and everything was supposed to happen just SO. Stories are a writer's babies, and we guard them jealously. But I've had to keep letting go of pieces of the story, as it seems The Editor keeps making shocking changes to (in my mind) the most key plotlines! Now, I don't mind a few liberties being taken, but for goodness' sake, don't throw the entire manuscript in the trash! ;)

Speaking of writing...I feel like I'm getting closer to overcoming the panic that inevitably pops up when I think about getting back to my novel. But I still feel pretty unfocused, overwhelmed, and uncentered, too much noise blocking my soul from connecting to the inspiration. But it's getting better. Maybe when I get back from my July tour of friends who will let me crash at their pads I will have managed to let go of some of the emotional pain that I know is the main obstacle. For now it overwhelms me to the point that I know it is impairing my healing, is part of what I need to heal in order to heal. But nothing to do but try the best I can to overcome it without putting pressure on myself.

To distract myself further, and hopefully get to that place more easily, I've decided to take a class. It's not a required course (frivolous, I know, and worse yet when I'm so close to being at the point where I could finally transfer to a University, but I have my reasons)and I've chosen it solely for the purpose of engaging my sometime Fibro-addled brain, and bringing enjoyment, hopefully spurring creativity and boosting my confidence. (Last time I took classes, I practically ended up having a meltdown...I was miserably sick and kept waiting for a good day to do my work, but they were too few and far between, leading to the stress of trying to finish coursework at the last minute, while STILL feeling unwell, and coupled with being extremely worn out from at least a year of struggling to keep a roof over my head and the merciless self-judgement of myself for yet another failure. Abject failure being something I wasn't very familiar with before I became ill...)
SO yes, I will be taking a course, but for fun! And I refuse to worry about how it would look on my transcript if I can't finish it or don't do well...(Partly because the subject matter leaves little room for it!) Yes, a course on Latin American Culture & Literature (taught in Spanish) is as probably as close to Heaven as I can get in a classroom, so we shall see...I don't think even a professor obsessed with symbolism could ruin a course like that, as long as it contains at least some Marquez and Allende.

In other news, I have a doctor's appointment tomorrow, with a certain well-known ID doctor who treats CFS. I haven't managed to see him since I lost my insurance, so I'm nervous both because I'm afraid of the cost, and because I missed my last two appointments and stopped taking one of the medications he had me on. $40 a unit suddenly overwhelmed me...along with the cost of my usual allergy supplements and some supplements I added in an attempt to boost my adrenals and stop feeling so overwhelmed and stressed out for no good reason. (Or perhaps with good reason but that I should have adjusted to long ago.) I'm thinking I may have to find a way to go back on them though, because I've definitely noticed a marked decrease in cognitive function (I found myself having to do this thing where I have to stop and visualize putting ideas or steps in order before I can verbalize them, because I can't seem to organize them enough to do it otherwise and end up tongue-tied. What better form of torture for someone who prides themselves on succintness?) and now that I think of it, my heart has been bothering me more than usual since I discontinued it as well...

Sadly, I doubt this doctor can do anything more for me, but he is probably the most reputable ally I have as far as proving my SSDI case goes. Plus, one of the experimental treatments he put me on has improved my immune system noticeably. It's not helping me get rid of the CFS, I don't think, but it has definitely put an end to getting sick with various infections several times a year, for which I'm very thankful...

So wish me luck...

Wednesday, June 16, 2010

The Temp Sensitivity Swings Both Ways!

I'm in Southern California, and have found myself feeling pretty let down by the weather so far this year! Very few sunny days. 2 in a row this week, and I feel lucky! Yes, I did say I live in California! But that has happened before, and just when I was getting comfortable enough to turn off the thermostat, it got cold again!
Not drastically, but enough so that I found myself suddenly waking up very uncomfortable and achey on a regular basis (to the point of not wanting to move) something that hadn't happened since late last Fall, when I realized turning the thermostat up to around 72 degrees kept me from having to wake up to a subtle but all-encompassing ache and discomfort every morning.

Yup, you may not read it in many places, but those of us with Fibromyalgia/or CFS will tell you, we are very sensitive to temperature.

Now, if this sunshine continues, the problem begins to be the opposite, as I found this morning...Just a slight bit too warm, and I wake up feeling feverish and groggy. It doesn't take much...I'd bet it wasn't more than 77 degrees in there, but it was enough to make me wake up and groggily scramble to turn on the fan!

Still, I so hope to be able to enjoy some sun this summer! Once I cooled down, that was what I most wanted to do today. Like last summer, to make up for the lack of sun the year before, I decided to use a self-tanner yesterday. (No, no pricey products for me, my trusty self tanner is a generic version of Neutrogena's from every broke Fibrogrrl's fav store, the 99 cents Only Store, lol. It works great though.)

I woke up today with a glorious simulated tan...and I felt poolside-ready. Only problem? No car!!!!

I contemplated riding my bike to the pool, but had too much to take, wasn't sure I'd make it or if I'd be up for the ride home later if I did. So I hoped for the best. And hoped. And hoped! Dad didn't get home till nearly 5, and by then there was a very cool breeze outside, and I was feeling exhausted. (Which sucks even worse when you've not done a thing to earn it!)

I am counting the days until July. In July I'm taking off! I've been planning since May... I just can't take how stressed I get here, how lonely and stifled I feel. You'd think not working I could at least get to take advantage of it, but that's seemingly impossible w/o my car. Case in point, went to visit my Mom this week. Was dead tired. Hardly managed to do any of what she needed/I wanted/she wanted to do...and then I was bone dead tired and couldn't bear to drive home Sunday night. So I stayed, but anxious the entire time knowing I had to get home.
So I'm stuck here, home alone in a Sr. Community, with not much to do but get tired, which is a bummer because if I'm going to feel miserably tired I'd at least like to have it broken up by spending some time around friends or other family members! As it is, w/the time I have to do that in a leisurely manner, I might as well be working. Which leaves me more time to think about that, and fight off many other sour thoughts, lol. I mean, I'm not talking going out & partying w/my friends & staying over at my girlfriend's. Those days are long over. It'd just be nice to be able to visit friends & family who live a little further away & enjoy it.

Anyhow, so I was feeling particularly stressed (about certain chaotic things that are out of my control, about being "exiled" in the OC, and dying for a breath of fresh air outside these suffocating walls) and decided, if what it will probably take to get my car "back" (ah yes, my Dad lets me live with him, but c'mon a month that turns into 6+ twice, and 50k+ miles on the only item of value I have left? It's a bit much. And makes me sad, and angry, and is another reason I need to not be here, so I can quit dealing with that sort of insanity and hating my body even more for letting me down and being angry at the world, myself, and stuff...ahh, rambling, but see what I mean?) I need a vacation, even if it means the dreaded couch-surfing I moved here to avoid...At least it will be willingly...and hopefully, even with the increasing brain fog of late, and the oversensitive nervous system, it will do me some good to be around people going about their daily business. (These days, I'm mostly over the huge complex I had about not being able to work, but I still find myself feeling like a bit of an outcast and being around people going about their daily business seems ridiculously enjoyable! Seriously! Take me with you to pick up the kids from school, or let me hang out while you run some errand, go to the park/mall/etc. and wooo! I'm part of the world! lol. Silly but true.)What I wouldn't give to live around the corner from my cousins who have kids and help them out sometimes. I guess if I can't live my own life, at least I could be part of theirs...

Ah, but things are looking steadily up...the more time goes by the less time I have to wait for my SSDI case to be approved, even if it's anywhere from 1 month to 1 year, I'm closer. And then I will have money to start putting my life in order, making everything just so...(i.e. allow my inner anal freak to organize things "how they're supposed to be") or at least as close as to what I'd planned as I wanted, or the modified chronic illness-accommodated version of it. I can be on my own again, I can seek the appropriate treatments to improve my health, I can find a way to break my life free of this ice block it's been caught in and move forward towards my future, whatever it contains...a degree so I can be a "sexy librarian" (lol! j/k!)or start writing articles on health, music, or that book I can't seem to get out; some foster kids to adopt or just love and hopefully help guide onto a good path, or just a good if somewhat still chronically health-challenged life filled with good, positive people who can be my "tribe"...Definitely need one of those :)