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August 21, 2012 at 9:01 pm in reply to: Did you see the new vid with a symptom list? Can you help me? #2790Give My Daughter the Shot!Participant
Hi EDS99. I had the same issue. I did end up improvising though. Mine is in the mail as of yesterday or the day before. I’m not sure the address I had was the optimum address though but I believe it will get there. When I downloaded the questionnaire from the Home page, mine said that certain browsers might ‘purge’ some of the info or it may ‘lose’ or something-or-other-to-that-affect. It sounds like your info was missing as well as mine was. Maybe someone could post on here what is the best address, email, fax, etc. I’m still not sure of the best mailing address, therefore, I don’t feel comfortable giving the one I used and risk the chance of misleading you.
I hope everyone returns their questionnaire. I can’t wait til we get some answers and/or standards of care. That would be such an amazing blessing! I, literally, cannot wait to take some of the newer and future publications into my doctor.
Give My Daughter the Shot!ParticipantI’m hoping to address dysautonomia at cardiologist’s office tomorrow. I am aware that I probably need to see neurologist but am actually scared of what they’ll find. I don’t really want any problems with my brain.
POTS is: heartbeat raising 30+ bpm within 5-10 min of standing very still. Then it drops right back down upon sitting. That’s my understanding, anyway.
So, for me, today I had to run a couple errands and, since I had to finish today, it took me more than an hour. Plus, it wasn’t the ‘hour of sitting’ (like Bible study, church, library) and I had to stand and walk. I become so exhausted on an errand that it becomes a bit of a ‘wandering event’ and I’m not particularly effective. It takes much longer than it should. Like no oxygen and/or blood to brain or something?? Anyway, yes to all of the above. It took me a couple of hours. Of course, it probably shouldn’t have taken that long. I felt shaky and sick too. Now: Here’s the kicker… EVEN A COUPLE OF HOURS AFTER I’D REMAINED NEAR EXCLUSIVELY SEDINTARY, I WAS STILL HAVING MY HEART GO CRAZY!! That’s not POTS, right? Where it just goes crazy a couple of hours after the perceived offense. Of course, I end up a lead zeppelin and am panting/gasping for breath from massive exhaustion. This makes me wonder if I can do what I need to do in time for the morning – AND IT’S LATE AFTERNOON!
That’s GOT TO BE dysautonomia, right?? It doesn’t have the standard expectations that POTS does. What the heck is going on? I still have the shakes and feel sick and it’s 8 hours later! Is it CFS? I know that can wipe a person out for days and I notice that if I need to do something (IE: MD appt that costs an hour of drive time), I remain depleted for days (2-3).
I just want to know what to ‘attack’. How to ‘divide and conquer’. What goal would be a primary. I still have a brain that remembers normal and logic. It’s ultimately painful (mentally) to no longer be able to use my brain logically. Pretty sick, really. A ten minute menial task could take days (if I have a migraine, am unable to lean/bend, am trapped on toilet). I can’t even plan. I mean, c’mom… Who couldn’t do a 10 minute task in 2 days? Gimme a break! Well…. if you factor in the exhaustion, short term memory, pain which distracts focus, etc etc etc. I always used to just ‘knock it out’ swiftly and immediately – whatever it was. Now, it’s like an identity crisis. I would never avoid a task that I didn’t want to do – I’D KNOCK THAT OUT FIRST SO THAT IT WOULDN’T BE A MONKEY ON MY BACK!
So, I’m trapped with inability to complete less than desirable tasks, with the knowledge that a clean house is a personal expectation and I’d always kept a clean home for my self esteem, I can’t get a break from my hands and wrists causing messes which I can’t lean over to clean up, NOW REMEMBER THAT MY CHORES ALWAYS HAD TO BE DONE BEFORE I FELT GOOD ABOUT DOING SOMETHING THAT I ENJOYED!! I’ve made myself walk away from the mess and try to take a break and do something ‘nice’ – THAT DOESN’T WORK EITHER! I’m miserably sick and, no matter how great the great thing is supposed to be or no matter how sedintary I’m able to be – when you are SICK ALL THE TIME WITH NO END IN SIGHT – it’s just not fun! Lipstick on a pig. Perfume on poop. That’s what doing something ‘fun’ is like. Frankly, I avoid it anyway because I always made myself complete obligations FIRST! I knew I’d have the ‘monkey on my back’ if I left chores undone – always knew that since I was a teenager.
Like being sick on Christmas – oh, how dreadful, huh? Easter – was pooping myself this past Easter and had to miss Easter egg hunt that I desperately wanted to sit and watch, at my church. How bout a flu that is never going to go away -never! Try that on for size. How’s that for logic?
Nobody comprehends (the logical portion of my brain included) the phenomenon of being so exhausted as though ‘I’ve never slept’. Oh, get some sleep. The sickest of the sick seem to believe that getting a good nights sleep is refreshing. I still remember when that was the case for me too. It doesn’t make a s… of a diff anymore!!!!
Try explaining dysautonomia when everyone wants to PROVE that it’s anxiety. I HAVE BOTH AND THERE IS A DISTINCT DIFF!!! Don’t try to tell me that the unprovoken physical havoc was caused by my anxiety and begin SLINGING FACTS AT ME!! I KNOW THE FACTS!! Or at least the ones that I’m willing to comprehend as I live this nightmare! I know EXACTLY what a panic attack is!! I know MULTITUDES of HORRENDOUS pain, feelings, sensations, exhaustion, freezing, burning, sweating, chronic nausea, chronic GI issues, etc etc etc, heart problems, migraines. I know EXACTLY what it feels like to have my body go medically insane on me, unprovoked!!!
You know, many sayings have diff meaning to me. Such as: if you’re not part of the solution, you’re part of the problem!
Give My Daughter the Shot!ParticipantFunny you should mention that, Barbara. Remember the brief ‘touching’ on the topic of wondering whether or not we might wake in the morning. I (ow) wonder what our body must be going through to think something like that.
Remember my saying that: long ago, during pregnancy, I was told to listen to my body and that my body was smart. I’d spent my life taking that to heart. You and I were discussing the sentiment that I can no longer listen to my body, as I once could, because it was such a traitor to me now.
Ya know, I’ve since had the thought that – WHAT IF MY BODY STILL WAS SMART?! What if I was just in very bad shape on those handful of nights where I wondered whether or not I would wake. Dr Cheney’s saying that made me go … hmmmm.
August 16, 2012 at 7:31 pm in reply to: Did you see the vid about the end of my POTS? Please respond if you're interested in the clinical trials! #2765Give My Daughter the Shot!ParticipantI emailed per instruction.
Give My Daughter the Shot!ParticipantHi.
Please, do not be surprised to hear that I have never heard of that. I just wanted to ask that you keep posting on this. When you posted the other day, I looked it up and it appears that there are diagnostics (blood, urine, etc) to test.
I do have the symptoms listed but I don’t suspect a tumor, necessarily. I just thought that throwing this ‘extra tube’ into my next bloodwork panel might be an option for me.
Today at the doctor, for the FIRST time, my BP was high enough that the nurse had to ‘step back’, pause, and re-take it. I never have been caught with high blood pressure before (in that setting). When she calmly said she was going to wait a minute and re-take it, I told her that I could feel something going on. I could totally feel something going on with my chest primarily as well as a couple twitches. I didn’t, however, know that it would register. I don’t know my heart/body well enough to know whether my heart, blood pressure, pulse or whatever is affected. I just knew that something was up (wish I’d been able to pay better attention). Was I meeting my definition of ‘bottoming out’? Dunno.
My point… now I’ve had a confirmed and documented episode of high blood pressure. My son is having trouble with his blood pressure being too high also.
My friend who accompanied me to my appt argued with me that it was a fact that people get nervous at the doctor and dentist. Just between you and I – IT DEFINITELY WASN’T THAT!! It is insulting when people treat me like I cannot tell the difference from anxiety and my body randomly ‘freaking’/’shutting down’/’bottoming out’. Then, to go one further, and define/explain/present facts and ram it down my throat. I tried to explain that you could probably put a diff cuff on each arm and come back diff (which I’ve never tried). I PROMISE YOU THAT SOMETHING SIGNIFICANT WAS OCCURRING (that’s all I’m saying). I got the eye roll. Try articulating dysautonomia!!!!!!! Not a simple task, not at all!!! Nobody ever ever gets it – not ever ever!! Even if they know what it is, I can tell that it is just incomprehensible.
Hugs and please keep me posted. I don’t want a tumor but I would like some diagnostic proof (which might hopefully evolve into treatment or at least maintenance).
I’m not trying to shift to myself. I just wanted to respond. Sadly, I haven’t figured my health out well enough to be the one with the answers at this point. It would be great if you could follow up with information about your experience. We’ll be praying for you.
August 16, 2012 at 1:34 pm in reply to: Did you see the new vid with a symptom list? Can you help me? #2757Give My Daughter the Shot!ParticipantI’ll mail mine.
Give My Daughter the Shot!ParticipantYou’re right, Barbara. It’s terribly sad to think of how much havoc and compensation our poor bodies are subjected to EVERY DAY! It may well account for the exhaustion, oh the heinous exhaustion. Like a cell phone that’s searching for a signal – screen sorta appears to be freaking out, shuts down other systems, can’t finish any given task, possibly overheats, sometimes seizes it up, and definitely kills the battery RAPIDO!
Give My Daughter the Shot!ParticipantHi Barbara,
I know I’m not really ‘black -balled’, I just had a ‘moment’ or so. I think it’s frustrating having elusive medical situations and I become more frustrated (reliving medical experiences). I also want answers so desperately – concrete answers.
I also feel embarrassed that this much is wrong with me. Doesn’t ‘jive’ with my self-esteem and identity. I think it gives me a bit of a ‘chip on the shoulder’ at times. ‘The Perfect Storm’ is not a scarce or unfamiliar term in my life.
Then I go through feelings of denial or not wanting to admit. Sheesh, I still remember back some years ago when I couldn’t turn my head properly and was worried about admitting to that -can you imagine. Wow, it’s just been ‘heaped’ upon me since then.
Anyway, regarding the CSF/water, it’s not confined to allergies. I’m sure it doesn’t happen every time I lean – then again, I can’t really lean without having a host of issues strike. It’s tough to compartmentalize. ‘Divide and conquer’ doesn’t really work so well either. Goal setting – a thing of the past. Time management – forget it (a 10 minute menial task could take hours with all the pausing, having to sit, catching breath, pain, exhaustion, possible heart stuff, nausea, dizziness). Very disgusting and very ridiculous. So unbelievable too.
Anyway, I digress. I don’t have my heart stuff segregated from everything else and nothing seems to be stable. Makes it tough to even figure out patterns (not to mention there really aren’t any dependable patterns). I can’t even allot a standard 70 minutes for something that should take 10 minutes because I can’t count on my body for any predictability. Migraines, pressure, pain, GI issues, yadda yadda.
So weird. I think I just get desperate for a formula. My health does ‘get the best of me’ and, at times, it certainly ‘runs the show’. I guess I’d just like more sensibility and stability. I’d like to have a better ‘handle’ on what’s going on with me. I’m diagnosed with EDS a little over a year ago. Though for quite awhile before that, I’d been spending time enduring health trauma and the stress of doctor mistreatment. I just want to be in control of something that makes logical sense – my own body. It’s something that is almost impossible to grasp – the desire to have control of ones own body (even down to the basics of the autonomic system being afforded its own proper regulation and control).
I phish for answers though I think I am often too confused to put the pieces together. My brain just wants simple logic. I do appreciate the support.
Are You My Mother? remember the book?
Wag the dog. Another title that enters my mind somewhat regularly.
Give My Daughter the Shot!ParticipantHi Ang.
I, too, have neuropathy. It can be pretty awful. I am not sure that I experience it identically, but, I definitely have creepy crawling sensation at times. I had been told once by a chiropractor that pain doesn’t always ‘register’ as the traditional OUCH sensation. While I don’t necessarily classify this gross feeling as pain, I sometimes think of it as a sensation that remains nameless. I feel that I have actual pain sensations that would fall outside of the normal verbage for pain too. Like, pain with no name. Intense feelings of grossness that I cannot connect descriptive words to.
That ‘rotting’ type of sensation is so frustrating to me. It makes me think that my time might be best spent orchestrating a thorough and proper autopsy versus trying to explain what is wrong with me to a doctor. I am POSITIVE that there is quite a lot wrong with my ‘insides’ but cannot prove it (at least not nearly to the extent that I am certain it exists) and describing it has proven a huge challenge. Plus, it seems to be ever-changing – or more layering of the next dreaded ‘issue’ that commands my attention over the last ‘issue’. It never goes away but is overtaken, only to re-erupt with a vengeance again. Vicious cycle.
I know I experience absolutely dreadful sensations that have yet to be defined by descriptive words. Generally, in the familiar ‘physically battering layers’ that I experience daily with regards to pain, exhaustion, nausea, etc etc etc.
We support you and pray for you.
Give My Daughter the Shot!ParticipantThanks, Ang.
I was beginning to feel a little ‘blackballed’ since this has been a relatively reliable venue for information for me. I began feeling humiliated, embarrassed, and scared about what was happening and decided it sounded so crazy that I didn’t want to post anymore. My chest is KILLING ME today!
I haven’t even thought to check it since it’s pain. Maybe the pain is significant enough to draw my attention versus rapid, slow, or skipping heart rate.
Thanks for your post. It means a lot. I have so so so many similarities to you, per your other posts.
Oh, I did look up CSF and the ‘water’ can also come out of ones ear – and has, in my case. Those times where I was alarmed by the overwhelming pressure in my head/jaw/ear …. Yeah, things that make you go hmmmmm… I never paid attention to ‘water’ during those intense times because I’d never heard of any of this stuff.
I know this probably sounds pretty bad and quite immature but it is all just too gross and disturbing for me.
I’m pretty traumatized by what is happening to me and it does make it tough to accept and/or ‘digest’.
Thanks again for your post. I appreciate it very much! 🙂
Give My Daughter the Shot!ParticipantI’m exhausted half to death, do have fluid/water coming out of nose (both sides), am dizzy. Now I’m quite light/motion/sound sensitive.
Please help me out. Does anyone know what this is. I’m sure you can imagine that there’s a significant quality of life issue here.
Oh, pressure in jaw/head too.
I know ther are more symptoms but don’t really want to ‘got here’ at the moment. Fingertips hurt (r ring in particulr).
My eyes are buggin me too. I thought hte ‘watery nose’ was allergies. Is it? I saw the questionnaire ask about water coming out of nose. What ddoes it mena?
August 12, 2012 at 12:52 pm in reply to: Dry Eyes, Dry Nose and reduced sense of smell, Dry Mouth and excessive thirst. #2739Give My Daughter the Shot!ParticipantDry mouth is not constant for me. I do, however, recall when it has happened not being able to ‘chase it away’ with fluids. I thought it quite strange that it couldn’t be alleviated by copious amounts of fluids (especially water). I’ve also used Gatorade and Pedialyte to hydrate. Again, this is not constant for me and only at times.
Dry nose, again, happens at times and is enough to cause nose bleeds. Not consistently dry (IMO) though.
Dry eyes. YES! During eye exam I was told that I had Dry Eye. I was told that it could be more problematic than its name, dry eye. My examiner told me that she had it and it could be a bit rough at times. I assumed the random and intense (sometimes) stabbing pains in my eyes were from having dry eye? I’ve had petechial hemorrhaging in my eyes before (awhile ago). I, now, notice that sometimes after the stabbing pains, there are visible veins in the whites of my eyes. They don’t have the same appearance of ‘dots’ like the petechial hemorrhaging but are a full and well defined vein(s) lingering at the surface.
Of course, my poor brain cannot even begin to factor this in with everything else. I’ve just sorta ignored this as best I can. I’m certain that the struggle to find a doctor to help me with it (or to help me figure it out) would be too much for me to take on anyway.
August 9, 2012 at 3:39 pm in reply to: Can you help us with this symptoms review (easy checklist!) #2736Give My Daughter the Shot!ParticipantHi Dr. Diana,
Can this be faxed in to you?
Thanks.
Give My Daughter the Shot!ParticipantEven a checklist of some sort. Maybe per diagnosis: CFS checklist of diagnostics, then another for dysautonomia, also for fibromyalgia, then CCSVI.
Any organized, easily presented, something-or-other to take to the doctor. I’d love if I could print and mark out name (to preserve confidentiality). My poor brain is so bummed and overloaded with medical info. So much to overcome. Finger tips – ouch.
Thanks very much for any possible help
Give My Daughter the Shot!ParticipantAgain, I am shocked! I had not paid much attention to this topic, citing ‘my nails are the least of my worries’. OMG, while filling out the questionnaire (because I AM ALL ABOUT POOLING TOGETHER FOR RESEARCH), I’m blown away. I HAVE LOST MY MOONS!! The only partial moon that I have left is on my left thumb. Yes, they’re flat, partially flattened, or flattening. The ridges are thick and off. They feel strange too. Kinda crazy, really. Oh, and the white line with the dots – me too. Shocking, I never thought much about it. Just knew that tips grew white and looked relatively attractive as a result (used to get comments on how white my tips grew when other peoples grew clear).
I took pics of nails and snapped a farewell shot of the last partial moon that I have since I assume that it, too, will be gone.
I’m sorta interested to figure out how this piece fits. What does it mean to the diagnostic process? Where does it fit in? It is EDS? Dysautonomia? What does it indicate or link up to? Is it PROOF of anything?
Will it make the doctor help me?
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