August 12, 2012 at 12:24 pm #285
My normal resting heart rate seems to be in the mid 80s. Of course, when I feel myself ‘bottom out’ while seated (and not thinking about scary or depressing things – as I’ve been accused of), I notice that my heart rate falls into the 60s.
I just now sat down (was standing for a few minutes and trying to clean up a spill on the floor – from a strictly upright position without bending or kneeling). When I noticed a weird feeling (I think I felt what I refer to as ‘bottoming out’ or ‘shutting down’??), I checked my Mio watch and my heart rate is in the 60s. I think it was 66 and now it’s 68.
I don’t think to check it unless I’m feeling weird or ‘shutting down’ or sweating and feeling shaky or ‘bottoming out’ or skipping beats or nauseous along with burning, etc etc etc. You get the idea, I’m feelilng pretty crappy with some weird combination of messy health stuff, which prompts me to check heart rate watch.
This is why I can’t really gauge the POTS situation for myself. Now I feel weird/off and my rate is starting to go up. I feel sick and nauseous and it’s raising pretty rapidly, was 72, now 76… I feel a little shaky, headachy and nauseous. My head is bothering me, underwater-ish. My feet. My chest. I feel sweaty. My head. I feel shaky-ish. I just feel sick!!! It’s 78 now. Ew! It changes so fast that I feel like crying. Tihs is all within minutes. Ugh. 85. Now it won’t even read. I’ve begun to think that it changes too quickly to get a ‘read’ – I usually then just forget about it when it won’t read. Went back down to 70something now. This is within a few minutes. My feet tingle. My chest feels awful. Now it’s 86 again. I guess I’ll just try to figure out the best way to rest and ignore the lunacy of it all. 70. Anyway, my brain has some weird ‘clear’ feeling and my chest feels weird. I would blame the Mio watch but my body is going completely mad/insane. I don’t even know what to think.
I did go to church but only was able to stay for around 30 minutes. Seems a brutal punishment for such a short endeavor.
Now my chest is burning and I feel like my throat is too. Pressure again.
With variable sitting rate, I see no way of figuring out POTS for me. I’m too dysautonomic, see? Yes, it does go up 30 bpm but I am WAY WAY WAY TOO VARIABLE AND THERE IS NO WAY ANY SENSE CAN BE MADE OF THIS DISASTER. IT’S RIDICULOUS!!!!
Thoughts??? How do I gauge POTS? I’ll bet one day I’d have massive POTS and another day I might not, who knows. I try to pretend I’m normal (which it sooo futile) and ignore watch until and unless something really ‘sets me off’.
I’m all sweated up now. Another gross episode. I don’t even want to know anymore. I’m half tempted to check weird heart rate yet so annoyed that I don’t want to. 78. Curiousity won. Time to take a break from this weirdness. Anyone else have stupid weird stuff happen to them? And, NO, I wasn’t / am not really panicked – even though it’s not pleasant. My leg hurts now. Ugh! Etc etc etc. Yadda yadda. Yep, I’ll have an aftermath. Legs and arms feel tight and swollen (legs and feet felt swollen this am). Left eye swollen since this am. I don’t feel like naming the rest. Neck.
I’m fishing for suggestions versus griping (though I detest explaining what sounds like griping). How would one explain this to the doctor?? C’mon. I’m going to go and change out my dampened clothing now. Well, I’ll be sitting in it for awhile first since I’m not inclined to stand back up right away. My right arm feels all locked up too up to the collarbone and neck.
What the heck. I feel humiliated to even admit this stuff because it makes no sense!! So frustrating!!! I could cry. I assume the clear fluid coming out of my nose is because I feel sad and nearly teared up? Mostly right nostril, since left is a little stuffy.
Please God, let this go away. My poor brain.
I’m back. It’s like I ate something dead. I think i’m having a taste problem now. My right arm is sorta locked up with stiffness and pain, the collarbone hurts quite a bit. My back, neck, slowness, stuff hurts. 66. This could go on for ‘who knows how long’. Now my stomach is feeling nauseous. I am actually afraid to stand up. How pathetic, huh?August 12, 2012 at 2:40 pm #2740
I’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 13, 2012 at 11:29 am #2741
Hello! The clear fluid can sometimes be CSF I think. I am not sure how to be certain. I would guess if it is clear and thin and there are no indications of allergies. I hope you feel better and find a Dr to help you soon!
I know my resting heart rate is extremely variable. It can be anywhere from 58-135 usually. I would say my average resting heart rate is 90-115. As far as during what I call attacks my heart rate has been as low as 24 and as high as 250. This is certainly no fun. I can probably list 30 symptoms or so that I have.
Again, I hope you get relief soon!
~Ang.August 13, 2012 at 3:50 pm #2742
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! 🙂August 13, 2012 at 4:43 pm #2744
Hello again! I get chest pain quite often and often when I use my pulseox or bp cuff during these times I have either tachycardia or an arrhythmia showing. I hope you feel better! For me laying on my left side sometimes helps. I can understand what you mean when you say you are traumetized. To have so many symptoms and feel like your being so limited by illness that is hard to relieve and can be very unpredictable is very difficult to deal with. I find myself being very depressed about it. I have been out of work since March and struggled to get medical assistance and am financially burdened and just dealing with all this and my mom has stage IV cancer, my sister has EDS and dysautonomia, my daughter has autism, epilepsy and she is starting to have a few POTS symptoms and my niece is getting severe frequent migraines (we all live together)….it is all just very overwhelming. I try to remind myself of the blessings I do have in my life and to take things minute by minute because really that is all I can be sure of. I am here if you ever want to talk, just message me.August 13, 2012 at 7:27 pm #2745
Hi Give My Daughter the Shot!,
Never feel black-balled about posting your thoughts and experiences. Many times I read a post and either don’t have the energy (or have too much other work to do!) to respond, it doesn’t mean I wouldn’t like to respond, it’s just my condition and circumstances that let me down.
I think it is important that all symptoms are exposed and yes, many of them are weird! People will ‘search the internet’ for their symptoms for years to come and read these posts and it does help to find you are not alone.
With regard to some other points raised on this particular forum topic:
Fluid from the nose – yes it may be an allergy, my father is allergic to house dust and this causes him to have Rhinitis, just water fluid coming from the nose. Dr Diana was particularly curious to know if clear fluid happened to come from the nose when people leaned forwards, like her experience was. This fluid she suspected, in this case, was likely to be CSF leaking.
Chest Pain – I had chest tightening many times a day and I found that my diastolic reading (the lower one) was above 90 when this happened, and you could guarantee that the discomfort was worse if my diastolic was 95 or above. I would be curious to find whether you notice this ScaredSingle . . , I think it has some significance. The Pulse Pressure, which is the difference between the two BP figures (i.e. Systolic – Diastolic) is an important feature too, let me know what that is when you are having the chest discomfort/pain please.
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!August 13, 2012 at 7:45 pm #2747
Yes, that does tend to be thhe case for me 8/10 that my diastolic pressure is above 90 when I hhave chest pain. My diastolic pressure has been as high as 150 before. I do have a narrow pulse pressure I would say 6/10 times when I have the chest pain. That is a great observation. I know my sister has consistently low blood pressure and her pulse pressure is always narrow.
Ang.August 13, 2012 at 8:00 pm #2749
Yes, I did a study over several weeks and took and wrote down my BPs at numerous times each day, during various positions, doing various activities and through a variety of worsening symptoms and I found various trends, another one was that I had the most severe leg pain when my Pulse Pressure was in the low to mid 20’s.
It’s down on my ‘list of things to do’ to learn more about these things, so one day I’ll get round to it. I’m certain that these things could be included in the basis of more customised testing for POTS/Dysautonomic people.
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!August 14, 2012 at 4:53 pm #2750
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.August 15, 2012 at 7:35 pm #2755
What I don’t understand is, why this condition, which effects just about every system in the body, has not warranted extensive study before now. Why aren’t drug companies and governments throwing resouces at this terrible disease. Of the studies that have been done, why does no-one take them seriously? AND why does it have to be, that only those medical people who suffer it themselves, take it seriously. Why are so many of the studies having to be self-funded ? The list goes on. We’ve all been so grossly mistreated, being left to suffer without hope and, seemingly, no course of action we can take that will make any difference.
(UK)August 17, 2012 at 6:34 pm #2772dinydeekParticipant
The issues with POTS and Dysautonomia are lacking in care or concern from our experience.
But since being diagnosed with Mito, our daughters newer specialists “get” POTS and Dysautonomia. Even the nephrologist recognizes how horribly it can affect overall health and body systems and quality of life.
Why they aren’t researching it further is beyond me.
Interesting enough, back a few months ago when we eliminated all and I mean all of the corn including hidden, Abby stopped having POTS issues. At the same time we started using Pink Himalayan salt.
I have found for my POTS episodes if I soak in epsom salts the magnesium helps balance me. Also I take magnesium tabs which seem to help but can cause your GI to process quickly! Which is good if you are constipated…. 🙂
Hope you guys find some relief.. right now they think Abby’s edema issues and possibly her pancreas issues are dysautonomia in nature- or at least it is a contributing factor. We will see.
I think had Abby had a diagnosis of POTS before the Mito diagnosis, she would not have received the level of concern she has over it, but at the same time, it has begun to get convenient for her specialists to blame dysauotonomia with new symptoms before investigating…
DianeAugust 21, 2012 at 7:12 pm #2789
I’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!August 22, 2012 at 4:27 pm #2793
Ok. It was recommended that I see cardiologist (by endocrinologist – same practice) again due to dysautonomia. When I found out that appt was with PA (after having discussed and been advised by endocrinologist that it MUST be with doctor), I thought it best that I cancel appt. The nurse called me and encouraged me to attend, said that she would be around that day and would research dysautonomia. I followed her instruction.
PA (whom I do think is a good person) asks questions (approx 3 of them). All in the: “Is this a true statement” fashion. Were you asking about POTS was one of the questions, to which I answered yes. I had asked about POTS awhile ago but had since become far more convinced that I am incredibly dysautonomic. Again, I explained this ALL to the nurse (when I was in the market to WAIT for the DOCTOR and resched appt). She was even pulling things up online.
PA says that EKG is good (which is what I’ve always heard, well – I’ve done at least one other EKG and it was fine as far as I know). She says she’ll do a tilt table test. She explains that this consists of laying for 6 minutes (and that I should lay to get started), taking laying bp, sitting for 6 minutes, taking sitting bp, standing for 6 minutes, taking standing bp. THIS IS THE TILT TABLE TEST! PLEASE READ ON SINCE IT GETS SO MUCH BETTER – THEY MESSED UP ON THE ABOVEMENTIONED TEST!
Now, I must mention that I feel like CRAP! I’m too sick to even attend appt, frankly. I’ve felt shaky, chest pain, light sensitive, deaf in an ear temporarily, excessively thirsty, and I’m sure mucho more since yesterday.
Ok, here goes the test. A cute and nice 20 year old girl comes in and takes the lying bp, she instructs me to sit and times 6 min, takes bp, INSTRUCTS ME THAT I NEED TO SIT FOR 6 MORE MIN SO SHE CAN TAKE BP AGAIN WHEN I STAND. SHE HAD ME SIT FOR 12 MINUTES AND STAND FOR NONE! But she did take my bp as soon as I stood.
Then the PA comes in and explains to me about ‘fight or flight’ and how it’s a good thing. Asks me if I’m seeing anyone for anxiety. Tells me that my heart is WNL. I explain to her how the test was done and she says, “That’s ok” and tells me that the longer I sit, the better. When I explain that there was no period of standing, she says she’ll talk to the girl who did it. She proceeds to explain how normal it is for things to fluctuate and keeps ‘pulling the anxiety card’. I explain to her that she does not live in my skin. She keeps telling me what a good thing it is that my testing came back how it did.
I do wonder about why both ‘techs’ who were taking bp. The first one was when I got there and he had to change from my left to my right arm. The second girl, it happened upon standing, she had to ask me to remove jacket to get a read. Is there anything to this? I’ve had them not be able to get my temperature either and then give up on it. Ring a bell?
MY AFTERTHOUGHT IS THAT I SPECIFICALLY SPOKE TO THE NURSE AND WANTED TO FOCUS ON DYSAUTONOMIA! SHE TOLD ME TO COME IN! IF I NEED A NEUROLOGIST, WHY WASTE MY TIME?! I’M NOT A HYPOCHONDRIAC TRYING TO MAKE HEART APPOINTMENTS! The cardiologist says my heart is stable and my genetic doctor says that while it may be stable, it is still a concern.
Remember that the other day I had high BP, was taken twice to confirm just a minute or two apart. Yes, it was high. This is the first time this has ever happened to me that I know of. The funny thing is that: I could feel it in my chest while I sat there. I just couldn’t believe that somebody else was able to see something – anything! Then my friend tells me that I must be nervous. I mentioned it today and I was explained (as if an imbicile) that my heart can reach 180 and it’s ok. I tried to explain that it happens randomly and without exercise and was told that I am deconditioned. Holy s…!
Any thoughts, please! Sadly, I’m reduced to needing a support group for sanity!
Why did they even see me today at the cardiologist if I’m anxious and deconditioned? I can’t wait to get a copy of my chart and see how they don’t admit to the ‘botched’ harry homeowner , poor mans, tilt table test.
Imagine why I cannot articulate myself when all I get is someone standing in front of me (while I feel like dog craP) and ‘closing loopholes’ on me. They don’t even care if the answers/excuses they give me are consistent – as long as it ‘dams up’ what I’m trying to say/explain!!!!!
Oh, and I would assume that the hugely swollen left eye that I have all the time would have something to do with heart? When I ask about that which I can readily prove – all you have to do is look at my face – I can even see it in front of my own eye at times – they don’t know about that!
Do you know what would cause a left eye to be notably swollen around the orbital rim?
Of course, none of this is their concern because they only treat the heart and all of their tests are gold standard, I was told. Thoughts?August 23, 2012 at 5:41 pm #2794
Has the cardiologist looked for Left Ventricular Diastolic Dysfunction (LVDD) ? I bet the answer is ‘no’!
If you ever have a couple of hours to spare (?!!) this is a good watch:-
(UK)August 23, 2012 at 7:12 pm #2796
Thank you, Barbara. I’ll find the time to watch, believe me. Not sure how much good it’ll do since I’m treated the way I am. My cardiologist office called me back this am (the nurse). I was told that the cardiologist wanted to refer me to Mayo in Rochester. We both had a moment of confused dejavu. I told her that I thought I’d had a referral being processed for that and she was baffled and wondering if the referral had come from them. That’s 2 referrals in the last 8 days to Rochester Mayo. I may just be going, in that case. NOW, WHO THE HECK ARE THE KNOWLEDGEABLE DOCTORS THERE???!!! Help!!!
I’m planning to contact Dr. Francomano’s office to see if she has any colleagues at Mayo. Maybe if I contact the ‘heavy hitters’, I can figure out who is likely to ‘get it’ at Mayo.
I’ll be avoiding Dr. Kirmani at all costs (the CNN article about Gioia that recommends the occasional OTC Tylenol is appropriate). Since I have already tried Tylenol, I figure I can save myself a trip versus being stuck with a pack of insults. I’ve already read the article and know his viewpoint. I’ve done physical therapy and Tylenol. I do not need that advice. I need to figure out an experienced EDS neurologist, I think. Marc C Patterson, I was told by Mayo, Mn did genetics as well as neurology. Sound promising?
I HAVE BEEN DIAGNOSED WITH: mild diastolic relaxation impairment, global hypokinesis, LV function is severely depressed, EF 24-29%, mild mitral regurgitation and mild tricuspid regurgitation. That was per Echo. Cardiologist did thoracic MRI w/contrast and EF showed 52%. I was told that my heart is now stable and not to worry. PROBABLY BECAUSE ‘WORD ON THE STREET IS’ THAT I AM A LYING HYPOCHONDRIAC AND THEY THINK IT’S IN MY BEST INTEREST TO PAT ME ON THE HEAD AND TELL ME THAT I’M FINE TO CURE MY ANXIETY??? THAT IS QUITE THE CURE – YEAH – I’M BEING SARCASTIC! Anyway, I’m looking at my gold standard thoracic MRI and there are many areas that don’t fall WNL. I have no idea what it means, of course. And, you know that I won’t be asking – right! My mere mention of EDS and I’m looked at as if I have 7 heads. I JUST WANT TO KNOW WHAT IS CAUSING THE MOST DYSFUNCTION AND BEGIN MAINTENANCE IMMEDIATELY! I can’t even ask fraekin questions!!!
I think my sons school thought EDS meant ODD (oppositional defiant disorder) and they were very concerned about him being a student. It was a heck of a drawn out line of questioning. Of course, they still look at me like there is something wrong with me. Yes, I actually wish I hadn’t even mentioned. They probably wouldn’t have begun contact sports til next year. NICE LIFE, HUH! He’s 5 and all I wanted to make sure that, as he grows, they take precautions with the contact sports which were a nightmare for me to be forced to participate in as a child. Of course, I didn’t even want him labeled with EDS, much less ODD. I just wanted to make them vaguely aware. What a slap in the face! First impressions…..
I need to figure out Mayo doctors. Bloodwork, like for mast cell. I’m not sure what else can be dxed via blood. If they have to torment me by injecting me with dye, I want them to do the MRI and MRV that Diana said. If they do my eye exam and take films, I want copies on the spot (they lost them from my last eye exam). It’s grueling, trying to orchestrate the most worthwhile testing. I do it, in part, because I am so incredibly phobic of needles. At this point, I have no strength to partake of haphazard medicine. I just want to streamline and get it over with. It would be such a blessing to figure out who can be a doctor that will treat me like a human being and have enough comprehension to carry a conversation and make me feel some sense of security. I think I’m being told that I’m fine even when doctors don’t think I am fine (according to my medical chart, my ailments are well documented). It makes me feel discounted, insulted, hurt, anxious, depressed, etc etc. If I have nothing else left, I STILL HAVE MY INTEGRITY AND TO COMBAT ME OR QUESTION ME ON THAT IS DOWNRIGHT CRUEL!! My body doesn’t even allow my word to be iron clad anymore and I have to be very cautious with what I commit to since my willpower just isn’t a guarantee of physical accomplishment anymore. Boy, did it used to be! BUT, I still get to keep my faith in God and my integrity. It’s a blow to my very core to tell me that I’m fine when there is no way on God’s green earth that I am anywhere near being fine! It truly is very cruel and uneducated.
Now I digress some more. This is my 3rd rough day in a row and I can barely make it past dinnertime. It’s a lot more than massive exhaustion too.
Thank you very much, Barbara, for the link. I’ll have to try to watch it tomorrow. I wish I could tonight but I know I can’t.
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