Monday, October 06, 2008

BP and brain problems: "Help, I've fallen and I can't get up!"

I have lay down and not been able to get up. It was light, now it is dark. They say tomorrow may be a storm, so they may not be chainsaws at 8:00 am. I don’t know. I am in the space “beyond.” I do not eat. I do not drink. I sleep. I wake confused. I sleep again.

I cannot remember things. I do not want to be one of these people who says they cannot blog because of the blahs. I do not have the blahs. My heart does not seem to be able to produce enough force to keep my blood pressure from dropping. This raises my heart rate. This used to be called Orthostatic Hypo-tension because it is a sign of autonomic failure when you stand up and your Blood Pressure drops and your heart rate raises to try and compensate. A change of 30 mlb is needed for diagnostic standard.

However, now, I am sitting, I am sitting with Linda and Cheryl, but I am dizzy, I cannot see from one eye. We take my blood pressure, the systolic is 120, then 108, then 95. It is dropping and my heart rated goes up and up 110, but with a heart that flutters instead of beats. The systolic and diastolic are close together – there is no pressure in my veins. There is no pressure to get the blood to my brain. This makes me dizzy and have other problems.

It seems that I now have autonomic failure of Orthostatic (change from a static position) Hypo-tension, except I seem to have STATIC Hypo-tension now as well. I don’t move and my heart cannot account for the change. What is the change? Unknown, some further failure in the vascular system, it appears. Would putting a pacemaker in make a difference. Without knowing the cause (are the veins just all opening simultaneously after I have been sitting still for 50 minutes?), how could a pacemaker compensate. Without getting the blood to the brain, I cannot function. Where do you go to buy a home centrifuge? That would force the blood to my brain.

I am having a time of it, I have pushed myself as hard and as far as I can, and when I figure out how to combat this invisible problem, I will be full steam ahead (maybe I need a steam pump for my head?). I do not know. Truth be told, is that I feel very u-h for the last long while. And I except I will be u-h for some time to come. I do not have Mono, as it becomes harder weekly to do the postcards, and less are done each week. When will I become rested enough to be ill?

26 comments:

thea said...

I wish you a major absence of chainsaws - am sure they wouldn't help either!

Just wanted to say how much I've been enjoying watching the AMVs you put up on youtube, and the others that you've mentioned in passing. Things like your sports ones with music, and also some of the anime ones, Natalie I think makes them. Thanks for doing/mentioning these.

Lisa Moon said...

I don't pretend to have the same experiences as you, but I know for myself I often feel so alone and sad in my pain and suffering. No one else really understands (except for the few I've found online who also suffer) and I wouldn't want people to necessarily understand such an cruel disorder.
I wish I could just wave my magic wand over you and make things better if not perfect. I am sad that I cannot.
Instead I wish you some peace and happiness in your life as you have brought - and continue to bring - so much to others.

yanub said...

I was worried you were having a rough weekend. The hypotension--that can be connective tissue failure. It's common in EDS. I don't know why it wouldn't be common in Marfan's also. And, of course, it is made worse if you have neurological problems, which you do. It's very frustrating. So many of the symptoms you have remind me of Carapace, especially before she was diagnosed with migraine/epilepsy and started getting treated. I am so sure that you could have some improvement in your symptoms, some slowing down of what's killing you, if only you could get a doctor who actually gave a hair on a rat's ass. And it makes me angry, that you, for whom I've become so fond, are not getting the care you ought to have, despite the best efforts of Linda, Cheryl, and yourself. I want to slap someone, but my arm won't reach far enough.

Don't you worry about the postcards. As soon as you are feeling any better, we all know you will be slogging away at them again. Thank you for blogging even though you feel dreadful. I really appreciate it.

Miss Fairy Sparkle said...

Tough day. And hard work when you don't know what's going on. It sounds sad just now - it's hard when you want to play the video of your life and get on with things, and some bastard just keeps playing pause, and making your heart go wibbly. Think of you every day, and send thoughts of life and fun and wholeness and much more on top . xxx

cheryl g said...

When the blood pressure goes all wonky you should go lie in the hospital bed with your legs elevated. That will help your heart not have to work so hard to move blood. When your legs are lower than your torso it takes more pressure to move the blood up and down and you've got to admit for you there's a long distance between your feet and your heart.

Or

Figure out a way to elevate your legs when in the study.

Sis - you have pushed yourself really hard the last few weekends. Be kind to yourself and rest. I told Linda and I'll tell you... cancel some of the appointments.

I wish I knew how to convince you that you are not u-h.

OneSick said...

Elizabeth,

I am so sorry for all of this.

I wish you had a doctor on your side who would fight for the answers you seek as hard as you would fight were you able. I can't imagine your frustration! Well, I can, but I suspect my imaginings are puny and ill-conceived.

Would an ER benefit you? Would it at least get you on the radar or get this thing documented?

I can't imagine a pacemaker *wouldn't* help. But we have already discussed my imagination...

But I think it would be worth a shot!

One Sick Mother

Anonymous said...

for someone with all the problems that you have just described, you are doing increadibly well bogging. How is that?

Neil said...

Beth, you're an incredibly faithful blogger, and some of us can't wait to read your posts every day. But we know that it's more than just the blahs (oh, would hta it were!): when you don't post, it's because you CAN'T post. We will wait, some of us patiently, some of us nervously, until you can post. And we hope for the best.

If the best you can do is explain that you feel terrible, I'll understand. But I want you to know that I'm thinking positive thoughts for you. I'm here for you, and I don't feel that you're letting me down by not posting every day.

It's clear and sunny this morning in Regina, but the forecast is sill for rain, though it's now only a 60% probability. Go figure...

Zen hugs, love, positive thoughts,
Neil

Lene Andersen said...

Aw, sweetie. So sorry your body's screwing you over again.

There a postcard to you going in the mail today. Won't change your body, I know. Thinking of you.

Dawn Allenbach said...

*hugs*

Because I have no answers, I give my love.

Caroline said...

It is the relentlessness of illness that makes it hard to bear - I wish you better days, and if that is not possible I wish you the grit to keep fighting back as you are x

Tammy said...

I'm sorry Beth. Your blood pressure is just mind boggling to me. I am not even sure how you stay conscious while in a sitting position.
Take care as best you can and thanks for updating us, as sad and scary news as it is.
Huge hugs to all.

Anna said...

It is OK to be ill as well. Hope you are feeling a bit better.

Kita said...

Beth, just letting you know I'm still here, caring. Sometimes it is better to hold my tounge, than to speak, and ensure everyone knows I'm a fool! I'm sorry life is so difficult for you today, I pray that tomorrow is a little better for you

God bless

Veralidaine said...

Poor thing. I hope some relief comes soon. I hope some TREATMENT comes sometime.

I got your latest postcard, if that cheers you up at all. The yaoi extravaganza was... overwhelming! I laughed for about half an hour at the captions on the stamps, especially "drive safely and stop hitting the koalas." I don't know why that was so funny to me, but I was laughing so hard my boyfriend came to see if I was ok.

He left the room extremely disturbed because he found the blond pirate very pretty before I told him it was a YAOI postcard! So then I laughed some more because you had warned everyone the men would be disturbed by yaoi for that exact reason....

And the pirates and their nocturnal comrades are very lovely indeed!

Kate J said...

Sounds like you are having an even worse time than usual. So sorry. I can only say I hope it eases, I hope you can get free of pain, I hope you can see the sun shine again.
Love and peace.

Dawn Allenbach said...

Anonymous --

It's her sheer will to stay in touch with her friends in cyberspace that keeps her blogging. If you are new to this blog, please go back several months or even all the way to the beginning to read posts as I believe they'll paint that picture of determination for you. When leaving the house exhausts you, you figure out other ways to contact your fellow humans. This blog is not only her human contact but also her extended support system. If you are the usual anonymous who can't seem to empathize with others, please take your negativity and go away. You have made Beth miserable enough with your short-sighted, unsympathetic attitude. How miserable you must be to have nothing else better to do than spread hate to others. I feel sorry for you.

Elizabeth McClung said...

Thea: thank you, things happen as they happen, I guess, and to me they seem to be noise inspired.

I am glad, yes, I like Natalie and Magical Flute, they do nice amv's generally.

Lisa: Thanks, yes, well, that does seem to be true of chronic conditions, that no one really 'gets' it unless they are there with you for a while. I'd like to believe that most people would want to wave that magic wand, but maybe not - I am glad you are one of the ones who do. But instead I guess I just keep sliding (I would say going, but sliding seems to convey forward momentum without any sense of control).

Yanub: Hypotention generally can also be a thyroid issue, what makes this odd is that after some time, I will be in the wheelchair and suddenly I will get very dizzy and be unable to see and almost pass out, which is what used to happen when I stood - so having static, or seated Hypotention is unusual. If this is an EDS issue, have you figured out what the trigger is, is it pain or positional?

I'm sorry, I really made a hash out of this blog, but I wasn't going to do nothing at all.

Miss Fairy Sparkle: Thanks, that is a nice metaphor about the video as I do often feel like it isn't so much 2 movements forward and 1 back but one attempt forward and thee occasions of being pulled off course by a giant black hole.

Cheryl: If only I had time and pain tolerance to lie down, eh? I did yesterday from 6 until 10 this morning except for 90 minutes. Doesn't seem to have done much good. I have tried staying in bed now and don't think much of it.

If I knew HOW to cancel appointments I would, I got up and there were three calls within 5 minutes, two of which demanded appointments THAT day, including the "two week" heart monitor who told me that I should have returned the monitor 8 days after they gave it to me and someone else was waiting for it and I must wheel to the hosptial now, now, now!

Onesick: right now, after so many doctors, I am ready to take a break from doctors. It is rather disturbing to know that the hospital has a "catch and release" program becuase they don't know what to do when I come in so they say, "Try to stabilize and see your specialists" (what, try to stabilize for 9 months while I am on a list for a specialist?) - another reason I tend to avoid the hospital, as they only care about stabilizing emergent conditions of that HOUR.

I guess I should go in next time I have a prolonged wobbly heart and let them decide what to do. A new pill for the heart or a pacemaker?

I could easily document it if doctors had appointments beyond 3:00 pm - and there isn't a single doctor or specialist I haven't invited to listen, actually LISTEN to my heart for 20 seconds and guarentee they will hear at least one if not a series of erratics. They all listen, they all say, "Well yes, but that's not my area, I deal with structural defects, that's electrical, or whatever it is."

Anon: for someone who writes so often and has access to a computer, you do surprising well in life without having been given a name on your birth certificate; how do you manage to do that? Do they give people credit cards or computer access without even a name now? Or are you a fictional character, some sort of dicken's charicature, a modern day scrooge. Well Scrooge, explain thy own heart's true and I'll riddle you too!

Neil: Thanks, I try to be very steady blogging even if it takes longer or I need help from Linda or someone else.

I hope I don't have to post such, "Can't post" blogs becuase to be honest, they are boring, it is more interesting to read me railing against society than to say, "Golly, too much pain/medical problems/depression; can't blog." Ack, anyone could write that, where is the spark?

Lene: you are on my list for postcards this week too, except that I just got an assignment I have to finish writing by today or not at all, if you know what I mean.

Dawn: thanks, how is the research going, did all your fish survive?

Caroline: Yes, very insightful, "relentlessness" - is the word I would have used if I could have thought of it. It has so many permutations and yet never seems to be able to come into a stable state no matter how many pills or such are used.

Tammy: I have to admit I wonder as well when my heart monitor says I have 80/40 or 78/40, I tend to be a bit paranoid and if I can, call for help as I am sure I will pass out just transferring. I have sometimes tried for example when on my own, to reach the oxygen and then passed out right at the door; waste of several hours there. But then my family always seems to operate on seriously abnormal readings. My father was driving buses with B-12 in the 30's and DIDN'T have Pernicious Anemia. My grandmother had anemia due to cancer and when her RBC count was in the 30's instead of 150 or 200 they assumed she would go into a coma and die; but she was inviting people in for drinks and having luncheons. So maybe it is hereditary.

Anna: I have more to do, but less capacity to do it with, haha, that is familiar instead of money is it just health. Thanks.

Kita: I don't think you are a fool and I don't think anyone else does. Me, now I have let the world know far are wide how foolish I am! Thanks for your care and concern.

Veralidaine: While I may fit the literal definations, I am definately NOT a "poor thing" - I am a downed dog or something but not a poor thing.

I am glad you got your postcard and that it provided much amusement. And even more so when your SO expressed his attraction - isn't the gender bendy world of Anime great - we sort cards, and I'm like, "You just put a guy in the girl's pile" and Linda says, "How do you know?" Usually a slightly more angular chin and narrower drawn eyes, while both have skirts up to THERE and shaven legs, earring and matching tiarias!

I wonder since there is a "Magical Girl" part of Anime, like Sailor moon, where they spin around and get short skirts, over the top accessories and some sort of sparkly wand, if there is a Yaoi version of that?

FridaWrites said...

Sending my love to you. I had another episode of this myself last night, frustrating. For me it's from pain and temporary. Like yanub, I wish you doctors who are competent. Cheryl, that's what I had to do last night.

Veralidaine said...

Sorry, I forgot how you hate to be coddled, even in the worst of times! No, you're not a "poor thing," but I can still wish I could take your pain away. See, me, if I was in your situation I would be soaking up all the coddling and sympathy I could get. I'm pretty pathetic even when I've just got a cold!

Elizabeth McClung said...

Veralidaine: It's okay, actually several times I'm going, "What do you mean I can't go out, who are you to say I'm sick, rant, rant," when linda will come over and push me with one finger and I'll topple over. And Then lying there, I'll go, "You know, if gravity hadn't increased today, I would be totally up and out of here!"

So sometimes, I probably NEED to be coddled, I just am too stupid to take it.

cheryl g said...

I wouldn't say you are too stupid to accept being coddled. I would say you are too determined to complete whatever task you have set yourself or possibbly (sometimes) too stubborn to accept coddling.

Sunshine is forecast for the weekend on my side of the water so I will email Linda about plans. I'm thinking mini-safari seems doable.

thea said...

Gravity's such a *****! And it's not just a Canadian problem. We have gravity here too. It attacked me yesterday. Is that Linda's fault? :P

Hope things get more functional quickly, hope you get to talk to some kind of medical intelligent life form...

I am glad veralidaine got told off for hitting the koalas. Must not do that! Particularly appropriate for her namesake.

Elizabeth McClung said...

Yes, it is were not for these major fluctuations of gravity, I could so much more accomplished, as could you. But they never put it on the Telly after the weather news, "There will be a extra heavy gravity in Norich today and Splott; also in Canada, a heavy gravity front is headed toward Victoria, those sensitive to gravity changes will be most affected"

I agree, yes Veralidaine, please stop hitting ALL Koala's, we know they can be annoying but still.

SharonMV said...

Dear Beth,
I'm so sorry about the BP & heart problems. It's discouraging when you have to deal with so many symptoms, pain, illness on a daily basis & then something new or worse hits you hard. I wish I could be there with you & hold your hand. I hope this pases & you start to feel better. I'm glad Cheryl & Linda were with you when you wrote this blog entry. I hope someone is with you now.

Are you feeling a bit better today? Yes, please listen to Linda, sometimes staying home & lying down are necessary.

I sent you an e-mail yesterday about the latest postcard's arrival. I really enjoy the captions & stories you conjure up to go with the stickers & stamping.
I am on my own today as Dennis went up to Auburn (near Sacramento) to see his Dad in hospital & to be with his Mom & sister. One more night alone for me & then my sister, Charleen, will be staying with me.

Sharon

Laura said...

Beth,

So sorry that things are going phlatt. I have been doing some more research and the thryoid problem can be to blame for many of the things that you are experiencing. The heart erratics, low bp, metabolic changes and a whole host of other things. As for treatment I am sorry I have no answers I wish I did. Hang in there Beth.
Love and Hugs