Concise Article on Treatment of POTS

I had never heard of the cold water thing, totally trying that tomorrow, since I can't do salt or Mestinon right now, and was already having a bad flare. (I think cuz I stopped taking my Adrenal supplement last week. Can't remember almost blacking out so many times in one day for ages!) But yes, this is a good read.

http://m.ccjm.org/content/77/5/298.full

TLC, Giving, & Tx

First, I suppose I should apologize if I've come off a bit bitter, I was going for sarcastic but positive, and somehow it just doesn't come off on the page as well as it does in my head.

I am okay. I've done nothing all year but hang on and try not to rail against it all too much. I just kept telling myself, a few more months till the hearing, a few more months till the decision...I guess the TLC I received helped, as well as what I got to give some here & there, too. I hadn't realized what a huge thing that was, what a piece of me was malnourished, it feels so good to give. Giving makes you feel useful. Yup, sick people need to feel useful, too! Let us help! (But don't get mad if we can't.)Or at least, let us love, yeah, awww!

I'm so grateful, too, that my brain has been working. Not continuously, but still better than in years. I can remember phone numbers again! If I'm really worn out, it gets worse again, like, a few weeks back I spent a couple of weeks at my Mom's and was dying to go home, because my brain was all pretzeled up trying to keep track of my toiletries & medications & things, as well as remember where her kitchen things/toiletries were located and I kept forgetting why I'd walked into rooms, which is infuriating(see, when I say I'm better, it's relative, cuz you'd think having stayed there for roughly half the year altogether I'd know where stuff was, but...I'll take it. I just hope it doesn't bail on me if I have to get a job. I'll beat if up if it does.)

My fatigue, it's hard to say. I feel like it's better, but maybe that's just because I choose not to think of it. I just lie down/recline whenever I feel compelled to, which is often if you're not me, but doesn't seem like a big deal to me, not sure if it's fatigue, or the weird nearly imperceptible signals of my dysautonomia pushing me to do it. The confusion is compounded by the fact that I'm feeling good, great even, the last couple of days, but in honesty, looking back the last month or so have been rough, symptom-wise, and it's not like my "great" is normal. Lots of Tachycardia, I think I ran out of Metoprolol, my beta blocker for the POTS twice this summer, and then I also ran out of the Immune Support supplement I was taking. Mushrooms. I've discovered mushrooms are VERY useful. Not that the anti-viral I am taking doesn't help, I was out of that for a few days and all hell was breaking loose, so that seems to be the keystone in my current treatment, but definitely enhanced by the Immune Balance supplement; the ingredients being Beta Glucans and a cocktail of Reishi, Maitake, and Cordyceps I believe.
I also found a bottle of Cordyceps, and found it seemed to work as well if not better for my immune system, plus I think I've seen my endurance strengthen, perhaps emotionally as well as physically. Wait, I take that back. It's more like it increases my ability to push myself, as, like I've said, I've tried to spruce the place up a bit, and that has caused some actual sweating, which felt amazing, ahh! But I have to admit that I also had more tachycardia flareups, which I got frustrated enough with to stop letting them push me around. Yes, I dared them to mess with me! As long as I'm not completely out of breath from them or getting cold, I try and go about business as usual. Before this laptop found me, I was having major issues with pins and needles and iciness in my feet, even cold sweats & nausea from sitting at the computer, but I even got stubborn with that...but pushing past it made me feel weird though, I almost couldn't sleep, I felt this tense, over-amped feeling like someone gave me meth and my muscles were too tight, breathing too shallow. I suppose it has something to do with the autonomic nervous system's control of epinephrine or something related.

Allergies, are sucking, contrary to what the SSA presumed. (That they must be non-existent because I haven't gotten treatment. MSI doesn't cover allergists, so...) I guess I forgot to mention, too, that I actually was taking 4x the normal dose of antihistamines plus natural supplements & sometimes nasal rinses to keep the excruciating sinus headaches at bay? Well, I decided to cut back on the antihistamines cuz I was running out and I felt wary of side effects at that dose, and then my allergy supplement got discontinued! Inflatrol, lovely enzymes, quercetin, turmeric, etc. I've managed to get new supplements with those in the, but they're not working the same, or my body does agree that a double dose of antihistamines is enough and wants me to make it quadruple again? It's usually like this. When I finally get them under control by about the third week, I have to stop taking the supplements because they thin my blood too much and if I keep taking them that last week, I will menstruate indefinitely, eww, I know. That time of month I'm utterly screwed. Not only do I get angry, senstive, and weepy, but my allergies are awful, my blood pressure drops and I can't have salt to raise it because I will not only bloat up but this will cause excruciating cramps and/or bladder pain. (Because my IC acts up, even if it's been good for weeks, that week, ow. (Another assumption the SSA made.) I also re-started taking an Indole 3 Carbinole supplement because my Endometriosis and other hormonal issues are acting up again, ugh. (I'd started eating soy again, big mistake as far as Endo. Another development, I'm anemic, and finally convinced maybe I need to eat meat again...but I can't bring myself to.)Been wanting to check w/my Dr. to make sure it wasn't the anti-viral causing it, but with all the family chaos in addition to my own turmoil, brokeness, and phone being cut off so I could help feed a family member, I missed my last couple of appointments :( I've been hanging on, but that doesn't mean it hasn't been emotionally overwhelming, and I have no tolerance for stress, so I've been missing a beat or two occasionally...)
Huh, you'd think all that would bum me out, but it doesn't, really, it's just my life. I do my best to try and live in the moment, because my sanity depends on it. So I will keep going to the park to take pictures of the beautiful scenery, play with and photograph my Mom's adorable doggie, get joy & satisfaction from little things, and on my never-ending quest to be a better me. Hopefully a me with more cash, and less weight! (I joined a really cheap new gym, awesome deal, under $20 gets you free tanning(?!?) & hydromassage, & a guest pass. So if I feel crummy I can bribe myself to the gym with a massage, which more than likely increase my circulation enough so I feel better, and then I'm already at the gym! Brilliant, no?)OMG, I think I'm watching Jay Leno without meaning to, and I swore I never would again after the Conan debacle! Gasp! Must go!

Waxing and Waning

...is the name of the game.

So maybe I did jinx things by putting in print that I've been basically content and things were at least feeling up...
Or maybe it's just my darn girly hormones messing with me. The timing is right. Just out of the blue I just started feeling my mood go down suddenly, like being on an elevator w/the bottom cut out. Suddenly halfway down the well and flailing for something to hang onto. It's not pitch black but I still now I need to find something. (Don't worry, today I've found a ledge and I'm resting comfortably.)

My physical symptoms have been waxing & waning too. At the beginning of the week, I was having some mean head-rushes, newly combined with jelly legs, and of the variety that threaten headaches if they persist.

That's better, but last night I didn't realize I'd run out of Metoprolol in my nighttime pill organizer (I was forgetting what I'd just taken wayyyy too often.) and ended up sleeping fitfully for only a couple of hours before getting up at 7:30am, trying again, rinsing, repeating, and giving up on sleep. Only to realize around noon that the first time I woke up it was my heartbeat misbehaving that woke me. (It was misbehaving again at the time.) The reason I'd done nothing about it at 7 was that I had been sure I'd taken it, the pill organizer was all set up. But now I remembered that I'd run out of my rx, and hadn't had enough to put it in the last couple of slots, Friday & Saturday Day. I checked to see if I had any in there for the morning, and nope...Yup, must've taken the last one yesterday morning or Wednesday night. Grrrrrrr.

I guess I should feel lucky at least I found a doctor who knew this was a thing w/CFS and that I wasn't as crazy as some of the other docs sometimes make me feel, and that he actually prescribed me something to help, cuz I was sinking fast before beginning the Metoprolol. Spending far too much time in bed, and just plain trying to distract myself from my racing heart (if it was slow enough to allow it). It doesn't completely stop it, and now, the day I miss a dose I can usually count on my heart wigging out at full speed on a race to nowhere. But still it's been a lot better, and I'm grateful.

Lethargy. I guess that's the best word for what's kept ne from calling UC Irvine to further investigate their ALS/Neuromuscular Disorder Clinic to find out if they do indeed have the type of testing I'd like done on my Autonomic Function.
Since I still feel some level of sickness caused by what I belive is Dysautonomia on a daily basis, even when Tachycardia is under control, I really feel it's important to my Disability case to have these darn tests done (In the case of the tilt-table test, RE-done, AND interpreted by someone who knows how!) it should be a top priority. Ah, I think seeing THAT in print may have just been the thing to make me truly understand that! (As well as the lovely episode of nonsensical feeling hot, breaking into a cold sweat and feeling weak, nauseous, and really, really ill I had earlier today!)

The other thing of consequence (cuz, yes, my laundry is of consequence, cuz I have nothing (much less anything cute) left to wear but whatever I slept in, is getting my butt on the waiting list at some of the affordable housing apartment buildings around here, which are actually pretty nice!
Of less immediate urgence, but still with the potential to have a high impact on my happiness, health, and sanity in the not so far off future.

I think a lot of the time now...well, it's been so long that it's seemed like no matter what I do right, how I prepare, try to plan, find ways to move forward, I can't get there...I kind of feel like it's pointless. My life has been on some type of hold for 7 years now. Almost total hold for the past two.
I've had to let go to survive and stay sane. So I'm not as on top of things as I once was, and that's frustrating on the days I care, and as I've mentioned before, I have trouble deciding if it's for the best or a sign of an impending depression sneaking up to envelope me...but as I just said, it's a necessary conecssion for sanity, so I guess there's my answer.

Did I mention I'm starving? Sharing that is my way of excusing the perceived previous rambling. I had a yummy shredded carrot/ginger/lemon concoction with some Young Coconut Kefir pudding a couple hours ago, but I'm starving and so tired of chopping and cooking veggies. Microwave baked potato to the rescue! Here I come!

Fun with weird symptoms...

Well, I guess they would actually fit into the broad spectrum of Dysautonomia. I haven't checked my blood pressure today, mostly because I didn't want to see how fast my heartrate was, but I'd be willing to bet it's pretty darn low, and dropping steadily the more I stay upright.

I hate it. It feels so scary. At least the episodes of super-fast heartbeats are understood, mostly, and still, they can be a bit unnerving when they get fast enough and last long enough.

But it's this other stuff that kills me. It's almost like a feeling that some unseen force is strangling me, smothering me from the inside, and someone let too much adrenaline loose, and I have that crawling almost rushy feeling from my chest down my arms, and up to my neck, which wouldn't feel so bad if I needed to run somewhere, fast, but since I don't, takes on a whole other sensation. I feel compelled to lie down, but just lying down won't do at this point-- I have to lie down as flat as possible, with even my head elevated hardly at all. My muscles are shaky. I was feeling like I couldn't breathe,or a similar kind of desperateness, and the panic this all incites makes me want to do anything but lie down, I feel like I have to do something, find some way to make it stop, but something tells me my body is nearing the edge, and if I don't lie down, something bad will happen, I don't know what, but it's like some kind of explosion building up...getting ready to short-circuit my body. I can't tell if it would be my heart, or my blood leaving my head and making me faint (I see spots) but it wouldn't be good, and it would definitely not feel any better than lying down flat trying to breathe and distract myself from the uncomfortable sensations...So that's what I did, but it's still scary and it takes willpower to stay calm, and as I'm dealing with it all, I have to find some way to distract myself w/this blessed laptop, although my arms feel weak and tired like I'm lifting weights.

This is the kind of stuff about my illness that I absolutely HATE. I can deal with pain. I can deal with fatigue (thought it sucks, having such an active mind). It's weird stuff like this that unnerves me, brings me close to tears, both because it's scary, and because it makes me feel so incredibly alone, and trying to fix it is rather hit or miss.

I'm guessing this is Dysautonomia, but not having been officially diagnosed(well not sure, I might HAVE been...either way I'm going to work on that next week.) I don't have anyone to treat me for it, or at least reassure me, or advise me, or put me back on the right path when I get so desperate I can't think straight. The one doctor who acknowledges the symptoms as something he sees w/his CFS patients doesn't want to deal with it...so here I am.

This has been the kind of week where the truth very grim indeed. I've spent the entire week fighting. Mostly fighting to be upright. I need to be upright not just to leave the house and go run errands, but to tidy up, change the cat litter, make breakfast, work on my computer, chat with my friends, answer e-mails, be part of the world I still am fortunate enough to have when I can't leave the house and don't know anyone for miles.

It's so hard to get every little thing done when you have to keep lying down! I managed to fold a 1/4 of my clean clothes and put them away, because yesterday something else took priority and it took me all day to do, focusing solely on that, and fighting my body's current aversion to being upright the whole time, PLUS pain, and then not being able to focus, followed by not being able to remember why I'm doing what I'm doing as I attempt to switch tasks. I did it. Woo hoo. One thing accomplished all day long, lol. I don't care, it was a victory.

I guess I don't blame people for not understanding why Fibromyalgia is so disabling for me and not for others. I'm kind of beginning to think that the people who can lead more or less normal lives just don't have all these symptoms. Like I said, if it was pain and fatigue, I could manage. It's all the other little things piled on that make it impossible for me to work more than sporadically, even from home. Memory and concentration problems, tachycardia, orthostatic hypotension...When you add those to pain and fatigue, you're pretty much screwed...

Oh well. I'm trying to stay calm. I'm going to load up on gatorade tonight, rest, watch some good shows or a movie, take my meds and supplements, some extra salt and Monday I will call a doctor I know of who I know will more than likely help me figure out what exactly my low T4 test means as well as give me a referral to a Dysautonomia specialist I researched...Wish me luck!

What a WEEK!

And thank goodness it's over! Even though I've been sick for several weeks now, this past week was the roughest yet. Antibiotics for my kidney infection weren't working, so I had to go get more. At that point, I was overheating, having hot flashes and cold sweats, and feeling nauseous. Somehow, I got myself to the doctor's and even got in a good mood. It was weird. I honestly think after spending so much time home in bed sick and not seeing anyone but my Dad, and briefly, my brain was just craving some human interaction like mad!

I guess that's part of why this whole "sicker than usual" spell has been so tough. Prior to it, I had at least 3 doctor's appointments a week. (No, I'm not some kind of crazy, it was physical therapy, or my allergist, or a therapist, lol. Just trying to treat as much as was treatable any way I could. Physical Therapy did wonders btw, I'll have to talk about that!) So, pathetic as it may sound, at least I got out and got to talk to real LIVE people at least a couple of times a week and feel like part of the world. I used to be okay with sitting at home alone, but it's just so great to be around people, get distracted, joke, laugh...But lately, I've had to give up on that. First because of financial issues, I had to cut back to bare minimum appointments, and of those, I ended up asking to be billed for most of the co-pays. I'm in such a hole!
Then, I've actually, without a doubt, been far too sick to do much. I kept trying, and trying to do stuff, because I'm stubborn, pig-headed, and that whole guilt thing, but after a few weeks of being sick...I could almost say it broke me a bit...but on the other hand, there was some of that whole "if you can't beat 'em, join 'em" thing going on.

I just had to come to the realization that, okay, I'm really, really sick right now. Nothing else to do but face it, especially when it's so bad I was starting to avoid even checking my e-mail because being upright was making me feel so ill.

Ah, yes. Dysautonomia. My blood pressure was no lower than it has been since I started on the Beta Blocker, but I could tell it wasn't staying up. I was having headrushes galore, to the point where I was starting to get headaches again, and being upright, sitting at the computer was making me feel just plain ill. It's almost like this anxious feeling, it seems like it's hard to breathe, the muscles in my upper body get completely tensed up, and I just feel sick. And an overwhelming urge to lie down.
It got to the point where I was getting all shaky, like a few weeks back, so I decided I'd better listen and keep lying down, cuz that stuff unnerves me.

PLUS, the UTI was getting so bad, my back was killing me, all the way around actually, and my stomach was swollen enough so it looked like I was pregnant, though I was hardly eating. (Eating made the pain worse, kidney infections seem to screw up one's digestion; at least with me they do...)

I started to get better after a day or so of antibiotics, but then the Dysauntomia flared back up, complete with a resting heartrate of 130. It was so bad I felt out of breath, like I'd been running. I figured, I've gone up to 150 on the eliptical trainer before (back when I was well enough to do that for 20 minutes or so) and there's a hospital less than a mile away, so if it got worse than that, I'd go.
(I think it may have partly been because I ran out of my Beta Blocker the night before, plus, in retrospect, I now see that infections always trigger the Dysautonomia symptoms.)

So all that was fun. I medicated myself any way I could. I had some Celtic Sea Salt, extra pouches of Emergen-C, and vitamins/supplements galore.

I've come (back) to an old conclusion. I need to help my adrenals. Yes, I may have chronic enterovirus infections, but they don't usually make me this sick. And in the past week, I've had different types of infections...so I knew it was my immune system that was having issues. Plus, the Dysauntomia always gets better when I treat my adrenals. I've had a couple of different holistic doctors tell me I was having adrenal troubles, and I KNOW one supplement for them that was key in getting me out of a Dysautonomia flare that was the worse ever (after my last "real" job).

So even if the virus is the cause of everything, treating my obviously exhausted adrenals SHOULD help right? Adrenals regulate your immune system, your digestion, blood sugar, BLOOD PRESSURE, electrolytes, stress response...all of which I've been having trouble with...I am happy to report, that I was pleasantly surprised to find that w/the purchase of some Whey Protein and a box of Emergen-C, I actually have many of the supplements that can help support my adrenals already! (At least for a couple more days...)

So I'm going to work on that, but most of all, just relaxing and accepting that I need to rest, and it's ok to be lazy. Sheesh, that Catholic guilt really does NEVER leave you! Hoping to start some chair yoga tomorrow. Must find my Zen, wherever or however my life is destined to be...