EarthMother

Ditto on getting a copy of the vitals during the test, NOT the interpretation. I wish I had five years ago ... turns out the hospital LOST my results and my cardio also didn't have a copy. Ugh. My BP sometimes drops, sometimes doesn't. But my heart rate always jumps. So it is considered POTS. Hang in there sweetie and good luck with your little one's dental procedure tomorrow. ~EM

I refused the meds for both TTT I had. I am also very symptomatic both Docs agreed to try it without and my results confirmed POTS no problem. Don't be afraid to ask questions ... to question the answers you are given ... to weigh the choices for yourself ... and kick, cry or scream until you get your way! :-) Good luck on your T3.

(((((((Gentle Brainwaves)))))))) your way. I had a "drunk" day just last week. They are so awful and strange. Today has been a laying flat day for me (accept for an hour or so I was able sit slouch in my wheelchair on my patio out back. It felt good to be in the fresh air a bit at least. I am going through a bad crash right now, and like you as I have remeberances of how bad it has gotten in the past, I begin to worry that THIS episode is going to deteriorate into how bad it was back then. It's like re-traumatizing ourselves again. I find it most difficult to uncouple those memories (hospitals, bad meds, bad reactions etc.) with the bad symptoms that are happening now. I wish I had some wise woman words to help you through this miasma, but I just try and hold on as best I can ... remind myself "that was then, this is now". I am not the same woman I was then. And ofcourse I think of all my POTS familly here who are with me in spirit. I'm with you, too. ~EM

I've been with my PCP for 10 years, up until this year we never discussed "prognosis". Its always just about dealing with symptoms and whatever comes up at the time. I remember when we first discussed my leaving work ... I thought, I'll take some much needed down time and "recover" what I lost over the years. He didn't really say much then other than that might not be possible. This last winter we were filling out disability forms, were it really shows the nitty gritty pithy things that we can't do for ourselves (like shower without assistance, etc.) He had a question on the form to complete about prognosis and I looked at him and said "We've never discussed that before." I remember him putting his clipboard down and meeting my eyes with his. He talked about the ups and downs that I would likely see in the future, but that ultimately my condition would continue to decline and that my overall prognosis was poor. It was hard to hear, but decidedly true based on my experience to date. I don't know if it applies to all middle aged women with POTS or not, I also have autoimmune thyroid and chronic fatigue syndrome -- hey but what's in a name. Good question. Thanks for giving us something to think about and share.

I had to leave my high-tech managerial career and the place I loved for over 23 years in August of 2007. I am currently 46. I had an amazing and supportive work environment and over the years created as many coping strategies as possible including a couch in my office, a reclining computer chair with elevated foot rest, teleconferences to replace committee meetings as well as working from home some of the time. But when 'some of the time' became 'most of the time' and much of the time I was too sick to work even from home in bed ... I had to admit it wasn't going to work. It hadn't been working for some time. And things were not looking like they were getting better. My decline since leaving nearly two years ago has been dramatic and continues to loose ground. I wonder if I wasn't living on pure adrenaline those last months in 2007 and once I left my career my body finally threw in the towel. I realize that I can never go back to that high pace pressure schedule, but I do hope in time, with rest and perceverance to improve to a point where I can enjoy the little things again. You know, like being UPRIGHT! LOL ~EM

Oh sweetness, I am so sorry for your loss. I believe there are no accidents in this life ... especially where beloved pets (our teachers) are concerned. Know that everything happened, just as Tami wanted. It could have been no other way. I'll add my own special story on the death of my own dharma dog ... http://www.coolkarma.com/dharma/?p=5 Good thoughts your way ~EM

Just as a related aside .... You can usually buy UTI kits in the local pharmacy without a prescription. I think the brand I keep is actually called UTI. Its a dipstick urine test you do in the morning ... much like a pregnancy test I always keep one around just in case I suspect an infection and want to catch it early.

I'm in! This most recent crash has gotten the best of me. (Had one day of hope earlier this week that things were turning, but that was quickly dashed by a return and resurgence of symptoms the next morning.) I've got a fridge stocked with oranges, yams, cabbage, and papaya as well as a dozen cans of organic chopped tomato that arrived yesterday. I'm set. Will let you know.

It was a big step. Congratulations for being able to take the trip, Cordelia. Sometimes our heart spikes can really be a trigger for us to spiral down into a worry vortex. There could be an infinite number of reasons why you had a spell of tachycardia. It's actually not uncommon for this to happen during meditation or deep relaxation, strange as that may sound. Could be the sun, new foods, you name it. If it seems to persist, or seems very different than other times when you had it, you may want to just get a general doctor's once over until you can see your EP this summer. Something to settle your mind and let you get back to enjoying the new possibilities this trip has opened up for you! Good thoughts your way, ~EM

Thank you Tearose. I absolutely agree my hormones are in the thick of this. The one good morning I had yesterday was just as my period started. But unfortunately that didn't last and today was awful and discouraging. I'd take ANYTHING by way of hormone replacement but so far my tests haven't indicated a need GRRRR. I had been on hormones since I was a teenager up until last October when my Cardio insisted I stop. So at the moment I have no clue what to do. Once I can get this poor perimenapausal body to my PCP I'll see about getting re-tested again and go from there. I have things like progesterone cream, estroval and remifem ... haven't used any of them, because I really have NO IDEA which to take ... but I do have them sitting in a drawer waiting on the sidelines until I can get a clue what to do. Ahhhh tomorrow is another day.

I live in California and could NOT switch insurance companies when my HMO did not renew their contract with my local hospital. I tried calling various other companies and NO ONE would insure me. I was told point blank that I was uninsurable given my pre-existing conditions. There is a high risk pool in California but that is very expensive. We ended up joining a high deductible plan because our backs were up against the wall. In another year, I'll be eligible for medicare, so that should help.

My decision this year was to try a manual chair and see how much I can do on my own in a year's time. My SSDI was approved last month, so it will be another year until I qualify for medicare in any event. The first thing I did was to rent a chair for a month. Then I could make notes and discuss it with my primary care physician. He agreed that a lightweight chair was something I should try, so he wrote a prescription for one to my medical insurance (HMO). The request was approved in another couple of weeks and my insurance arranged for a long term rental on a new manual chair. As fate would have it, I lost my HMO insurance a couple of months after that and had to move on to a new plan with a very high deductible. At this point I had a few months under my belt with a manual chair and knew it was something I wanted to have for my own. So we decided to purchase a new chair out of pocket and then apply the cost to the high deductable on our new insurance plan. Next year, I'll make another assessment to see if I the manual chair is working well for my needs. As my current home is two story with lots of levels (a step down here and there from kitchen to dining room to living room etc.) Neither a manual or power chair is an option for me inside the home. And given our tiny prius, I rather doubt we'd be able to fit a scooter or power chair in the hatch. But as we all know ... there is no KNOWING what the future may bring! We just sit back and enjoy the ride (or wheelchair as the case may be) as best we can. Good luck in your research and getting what you want that works for you!

Deep bow of thanks for everyone's kind words and suggestions. As I shared in a post with Ramakentesh this morning was the first morning in three weeks that I could feel a subtle shift. I was notably in less pain and the high level of constant agitation diminished. I made my way downstairs on my own by 11 a.m. and even fixed a little something for myself to eat. Amazing, given what I've been through this month. I was able to do a few floor exercises as well and even went for a tiny tiny drive with my husband in the car. All little things, as I know the big culprit is the tendency to overdo once we have a fleeting good moment. It amazes me still how this illness can turn on a dime.

{{{{{{{{{{{{{{{gentle hugs of congratulations}}}}}}}}}}}}}}}}}}}}} I must add that after almost 3 weeks to the day, this morning was also the first morning I was not completely bound by pain and high agitation. Same thing ... no idea why. (But I have been deeply grateful all morning for however long it lasts.) I pondered the same kind of things about what I may have eaten (or not eaten) yesterday. What I did last night before going to bed ;-) and a whole host of other possible "reasons". But I realize its unlikely I'll ever know. But I felt good enough this morning, to walk downstairs. I even did some floor exercises (ab crunches, leg lifts) as well as sit peacefully by a window and listen to the birds. I know this illness is a roller coaster ride ... and that everything changes (even the good times, alas.) However it is simply wonderful to have a morning where I could see the light around the bend. Cheers. ~EM

I remember this pattern so clearly from previous bad crashes. But can't recall anything (other than time) that seemed to make a dent in the cycle. I crashed about coming up on three weeks ago now ... the high agitation and surges that come out of no where. Dropped four pounds instantly and it is taking everything I can do to keep from losing even more ground. (i.e. get out the whole milk, butter, toast and nuts.) From the moment I wake up, my muscles (coathanger) seize up in pain, the internal tremors are tremendous, and I am in a high state of agitation (while motionless sitting up in bed) for the entire morning. But morning in this case lasts until about 4:00 p.m.! It is the strangest cycle. But by evening, I almost start to feel "normal" again. (Well, normal for POTS.) I can usually cook a little dinner for the family, write on the computer a bit, stretch out my legs, which had been huddle in a crouch all day. I even went for a stroll in my wheelchair up the street after dinner. At night, I sleep well. No pain. No muscle twitches. I may get up 2 or 3 times to use the loo during the night and still, no problem. But then in the morning ... usually after I get up and use the bathroom for the first time since dawn everything starts to plummet fast and the cycle launches for another nine hour stretch. I've checked my morning blood sugar and its pretty stable as it has been now for months. I figure it must be some kind of hormonal imbalance that is tied to a circadian body clock. Or! I suppose it could be histamine related. I don't tend to have "allergies" but I think the last time I had this I read somewhere that the timing and symptoms sounded like a histamine issue. I missed my morning appointment with my PCP last week, because I was too sick to go (what irony) perhaps I'll try and get a late afternoon slot and take a shot at it again so that I can at least get some blood work taken. Anyone else notice that morning crash that seems to last until well after mid day? Or any tips that I may have forgotten in my perimenapausal fog? Thanks crew. ~EM

Ice chips for dehydration I also use a small spray bottle to cool off and when very nauseas I'll spray that in my mouth too to keep getting at least some fluids. Peppermint tea. Peppermint candy. Ginger root tea. Aloe vera papya juice Hot packs or ice packs for the tremors -- sometimes both! One on the soles of my feet and one on my abs. Hope this passes soon, sweetie.

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Never have been told, don't really expect that at this time. Years ago I could see a difference with support stockings. Now even the really high ones don't seem to make a dent in my POTS. 2. Have you ever been diagnosed with EDS or suspect that you may have it? I don't have any symptoms of EDS 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Rarely I will experience a surge when I first go to turn in for bed. Something about my sympathetic system not wanting to hand over to my parasympathetic system I suppose. And I'll end up surging for 15 - 20 minutes. I then sleep well. Have all my life. What does happen more often, if that I'll wake up in the morning in a surge that started during a vivid dream state. Waking up is the rough one. That first roll over of the morning can be a time bomb. 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? I never had any of the formal tests for hyperadrenergic, but my cardio used that term last fall when I was in my first bad crash that started last spring. (I'm in my second bad crash, that seems to have sprung up at the same timing this spring.) 5. Have you ever been informed by a doctor that you have low blood volume? No specific tests for blood volume. Use to take florinef years ago. Did salt loading for years after. Did (and loved) DDAVP as needed for a number of years, until some endo I didn't know took me off of it and my PCP didn't want to start me back up on it again. 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? I had really bad IBS about 20 years ago. It lasted about 10 years, then went away. I don't tend to have those issues any more. But I certainly still flair badly after eating ... just can't say its IBS. 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? I haven't noticed this. 8. Did your POTS arrive suddenly? My crashes seem sudden and unbidden. But I've had notes in my charts since I was 20 years old that said things like "tachycardia on mild exharsion. (ok, they probably spelled it correctly though! LOL) 9. Is your skin pale? Not particularly. Blotchy, yes. Red nose often. Uneven skin tone. Yep. Not often pale. 10. Please the top 6 worst symptoms that you experience with POTS: Surges of adrenaline Inability to stand for more than 1-2 minutes Heart Palpitations Anxiety / Panic Temperature intolerance Post pranial weakness and flairs

I do! I'll pm you the info.

As I was reading a post tonight about the effects of the Sun and POTS symptoms, it struck me how many folks said they didn't sweat. I've never had any of the fancy vandy tests, like the sweat test. But I certainly have noticed a dramatic change in my body's sweat response. When I was younger I sweat like a pig ... well you know what I mean. But in the last few years, I've stopped wearing deodorant. I just don't seem to sweat anymore. I guess I thought it was because I don't do much anymore either. But now that I think of it, I don't tend to sweat when I'm outside in the sun either. Not like I use to. I carry around a little water mister bottle and am continually spraying myself to feel cool. (My dog thinks this is a fun game ---- EEEEEEW!) Other than nightsweats, when I can still soak through all the covers, my body doesn't seem to perspire at all. Is this part of autonomic dysfunction?

I often get stomach bloating ... not sure if it is ab pooling or GI related. But I tend to take 2 ounces of Aloe Vera Papaya Juice and it helps considerably with the pain. Feel better sweetie, ~EM

I can simply not express (as tiny tears roll down my cheeks) how moved I am by everyone's answers. It reminds me in a very visceral way that I do not walk this path alone. Deep bow of thanks for the support and love they are felt deeply and gratefully received. I will take to heart the suggestions, encouragement and advise. Yes ... This Too Shall Pass. ~EM

My thyroid disease DEFINITELY wrecks havoc with the POTS. I have hashimoto -- autoimmune thyroid disease. So I can be hypo or hyper depending on the mood of the antibodies waging war on my intenral organs. My PCP is wonderful and allows me to tweak my thyroid replacement dose based on how I FEEL and not strictly by the TSH readings. Sometimes just tweaking it a bit higher or lower helps to rebalance my system ... for a while. I use to take Synthroid, but switched to Levoxyl about two years ago (if memory serves.) Its still a synthetic, but the Synthroid at that time just didn't seem to be sitting well with my system, and overall I've done better in recent years on Levoxyl. I think at the time the company who makes Snythroid was having some issues with their 100 mcg dose consistency. Periodically I think about Armore or one of the other "natural" replacements ... but for a variety of reasons I'm not too keen on the notion of using this little piggy went to market for my thyroid booster. But that's just me. I hear really good things from folks I knew that used it. Anytime I go into a POTS crash, the first thing I check is my TSH and see if there is some wiggle room to tweak my hormone dose. Which reminds me ... I SOOOO need to call my PCP monday and get in there to see him! Good luck finding things that work for you. ~EM

I noticed in the posts this week that there are a few of us with Dysautonomia blogs and I thought it might be fun to share some links! I had been collecting short stories for over a year since my crash ... some are healing tales, some are funny and some are simply strange I suppose. I had thought some day I'd write a book. But I decided instead to publish them on the web in blog format. There are lots of pretty pictures (I'm a wiz with image editing! ;-) and lots of tidbits about living with a chronic illness. Here's the About page: http://www.coolkarma.com/dharma/?page_id=2 And here's a link the home page with the most recent posts: http://www.coolkarma.com/dharma/ I'm always looking for subscribers! Giggles. ~EM

Oh my goodness you poor dear. That's not a bad week, that a hospital drama TV series. My sincere thoughts are with your grandfather tonight. Holding you in the light. ~EM

Ok, here's a pic from my daughter's cell phone and 101 ways to use a wheelchair that is WRONG! So please don't anyone try this at home. My elevating leg rests adjust quickly and easily from ground to straight out in front of me. I'm in a bad flair at the moment so I didn't feel good to have my legs too far away from my chest. So what I opted to do today was to disconnect the foot rests (easy to do) and just crouch on the shin guards. My old chair use to always feel like I wasn't balanced -- and would actually be prone to tipping backwards! But this one is solid, and I was up and down inclines and sidewalks without ever feeling I was losing my balance. And yes, I have no problem tooling around with my legs raised, at least not this way. In my old chair, if I didn't have my legs tucked up under me, I would tend to just use a single foot rest and pretzel one leg around the other ... not sure if you can see that in this picture last month... As for specs, (I'm 5'5") my new chair is: (Frame Width & Depth) 16"x16" (Seat-to-Floor Height) Hemi; 17-1/2" (Back Type) Adjustable Height Back w/ 10 Degree Bend (Arm Type) Desk Length Fixed Height Space-Saver (Legrests) Hemi Swingaway Elevating with composite footplates (Rear Wheels) 24" Composite w/Urethane Tires And of course deep purple! I hope my body behaves and lets me get out to the park for a bit with my new wheels tomorrow. ~EM