"I know you wanna leave me but I refuse to let you go..."

Lyrics from song titled "Ain't to Proud to Beg". The Temptations 1966 USA

Short story today. Been in conversation with my guru Angela and my other guru Amallia.

Topic has been autonomic function. The above song lyric references the state of whether that function in our body is intact and behaving or whether it has gone to Daytona Beach on spring break for some surf and sun.

Some technical reading today puts autonomics back in the police lineup for possible ID.

The point I have discovered is that autonomics is much more complicated than anyone who otherwise has a life can comprehend.

Put another way, to get a true understanding of what is and what is not working in autonomics at any moment in time is not possible.

There are too many "centers" of control such as the nucleus ambiguus or the nucleus tractus solitarius in the medulla that direct, along with too many sensors / receptors that compensate when needed, that figuring this out would be like watching a feature movie frame by frame.

So I revert back to the idea that you and only you can tell when something is going wrong in your body. Doctors may be able to confirm your suspicions particularly if they can find a lesion somewhere or perform a confirming reenactment like in orthostatic hypotension, but I doubt they can address all of the possibilities out there just waiting to open a trap door.

It is just another layer of aggravation that we live with in our day to day struggle with this.

So, anyone want to dance? I " ain't to proud to beg" today after a forty point drop in systolic blood pressure over a few short minutes.

Autonomic mug shots. " I know you wanna leave me..."

Your friend.

Dan / Seattle

15 Replies

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  • Hey Dan,

    Even before I had this disorder I knew that neurolgists while understanding the brain, understand the anatomy and physiology but there are a million other 'mysteries' they don't understand.

    I believe maybe from watching to many movies πŸ€” that our artificial intelligence (AI) neurologist will in the future see our brain and work out how to fix it. But maybe for most of us we will be on our next life, whatever your beliefs are.

    I totally agree with you that you and only you know your body. I recently put in a complaint re my lack of care to be told that there was no solution (basically you have complained and we are five year olds so we withdraw any offers of treatment).

    I then wrote (as I was having a good day, but it still hurt) a very long letter to be placed in my medical file re this situation.

    I also listed as this health service were adamant that they were right and I was wrong that before leaving this country and moving overseas for 10 years that they had missed two serious illnesses I had most likely had from birth until 30 years and another that was diagnosed and potentially deadly but the doc didn't get back to me with the results and a year later when I was sleeping 19 hours a day and my husband forced me to go back to the doc that I had an underactive thyroid. I almost failed my final year of university due to being completely brain dead. And when I went overseas I was diagnosed with asthma in my 30s, I was an athlete from childhood who would use my friends Inhaler and joked I was just unfit when I did sports 7 days a week, and got diagnosed with coeliac disease when I'd spent my teens and whole 20s vomiting and being sent home from work due to lack of energy, and have pictures of me as a little kid with skinny limbs and a big belly. I was seeing a specialist but got the basic test for a stomach bug given anti biotics she told me 'not to be thinking stomach cancer' wtf! I told her I wasn't thinking that at all I was thinking work out what is wrong with me and sort it out.

    So in my recent letter I stated that I worked as a health professional and we were taught to 'listen' to the patient even if all their obs are normal and even their family members if it was a small child as a child might just be sitting quietly but the parents say they are usually completely hyper so something is wrong.

    And they were generally right.

    So I stated if I'm telling you something is wrong then it means there is something wrong. I don't like hospital stays, who wants to sit for hours in a waiting area if they are well and even overseas where I got all those diagnoses iv even been getting turfed after an asthma attack because for me all my obs will be normal O2 saturations 100% RR normal HR and BP normal but when they get my blood gases back I have really abnormal O2 and CO2 levels because guess what? I'm having an asthma attack. Iv been putting my shoes on to leave before when a doc comes running over and puts a mask with 10 litres of O2 on - rescus levels as yes I am very sick and then admitted to a ward.

    Even though I supposedly have this letter in my file, the same happened again recently. I wasn't having an asthma attack, I just couldn't breathe and I got sent home from emergency to not breathe all weekend where on Monday my doc came out and sent me straight to the other emergency where thankfully they had staff who spoke to the patient, listened and diagnosed me in 5 minutes.

    Iv have had pneumonia 3 times now and the first time they told me there was nothing wrong although I couldn't walk a few steps, and a doctor sat on my bed, took my hand in his (thought he might be proposing) and asked me in a gentle voice 'do you want to be admitted to the ward?' I said no I want you to work out what is wrong give me some medication and send me home. I'd rather be sick and miserable at home watching dvds than on some awful ward.

    So they were forced to do a chest X-ray and as I can read X-rays my lungs were full of fluid. I had pneumonia. So they sent me home with antibiotics which did nothing because it's usually viral but I'm often glad that I do have that knowledge as non professionals are just sent home.

    So back to autonomous nervous system. I must admit I know very little about neurology. It wasn't my area of speciality but it is a very very complex system as there are two competing factors so one might be telling you to stand up and the other to sit down to keep it basic, and they control all the actions in our body so responses to things and that then affects our organs.

    So maybe there is some crossed wires there when you had that drop in BP maybe your body should have been telling you to lie down but you have moved instead and such things as the vagus nerve do make you pass out so maybe the brain sends wrong signals to that nerve and that's why we end up on the floor.

    I think you have cracked it Dan although we are not neurolgists and even neurologists wouldn't totally understand this system never mind applying it to FND.

    I used to work full time and also study. I had a brain that couldn't switch off. Now iv powered right down but it was so intense that I would get bored- crazy I know in the summer and winter breaks from university so would do free online courses from an online company called edX. For those US people the courses are led by lecturers from Harvard, Berkeley, MIT etc. You can do it as something to just read, do an exam at the end or get a certificate iv completion. I just did it for fun. But I did a neurology course she the lecturers are like excitable 8 year olds, jumping around, taking you to museums, making it really visually interesting. I'm thinking of writing to them. If these guys are so psyched up in their subject maybe we give them a challenge- tell us how to fix FND.

    It's worth a try.

    Dan thanks for calling me a guru, I love your style of writing and I am totally with you on both refusing to let you go and ain't to proud to beg,

    Have a good day

  • Hi Amallia, my daughter has asthma, she didn't start until thirteen I think, the Drs kept dismissing me as I thought she had allergies that were setting it off but as they said it was too early in the year or too late in the year for allergies. After many dr trips I went straight to a and e, they rushed her straight through and spent night on oxygen followed by nebuliser back to oxygen. The dr at hospital told me what I had been saying was right (her allergies were starting her asthma off) he also told me to not go to Drs but straight to hospital as one day we wouldn't make it in time. Watching her struggling to breathe in the car wandering if we would make it in time was heartbreaking. Drs just will not listen. Hope you are ok. Love Lisa xxx

  • Hi Lisa, asthma is something to not mess around with and children can go downhill really quickly. I would suggest an ambulance but if you have to pay as you do in many countries and can't afford it then take ventolin with you and give as many puffs as you can. You cannot overdose on ventolin. And take a preventive too. What acute asthmatics need is the ventolin which you then get in the nebuliser as it goes into the lungs better than the puffers and the O2 which helps too. Prednisolone is the other step as the steroid effect open those airways.

    So I'm not sure where you are at but your daughter should have an asthma plan- what to do if symptoms worsen. This should be in a chart so it's easy to understand, she should have a spirometer and know what her best peak flow is and then you know when she is getting worse and not reaching that number, a spacer to breath the puffers through as it gets into the lungs deeper than just using a puffer without, and a good supply of preventers and relievers. I have 3 or 4 of each around the house. Also with reaons for attacks. It can be anything. I found the pollen in the country I moved to was so high and I had hay fever thats what set my asthma off. It can also be other allergies such as dust or mound and can be exercise induced or just that you are getting a cold and it's a hit harder to breathe or a combination of more than one. Has your daughter had allergy testing? That might help to avoid some triggers.

    Good luck and better to overreact than under. My first attack I sat st home for 16 hours as I didn't know it was asthma and I was an asthma educator. The consultant called me an idiot πŸ‘Ž

  • Hi Amallia, this all happened years ago in her teens, she has a nebuliser at home, I think she is 27 or 28 now and knows all her signs now, she has had allergies tested which included dogs and cats which we had had all her life but as it didn't start till she was 13 she has improved over the years. She lives with her children and partner now but no animals as her children have allergies too. Thank you for your lovely reply Lisa. Xx

  • No problems and I know from doing desensitisation some allergies can be cured. I first tested positive to cats and dogs but would never give them up and 2 years later was negative 😊

  • Amallia.

    You are a five star guru for the wisdom you have earned in your life and now take the time to share with our community.

    You gave me more insight than I could have bargained for. I too have had pneumonia twice now, once causing a collapsed lung. Vulnerability that we share to our other deficits? Absolutely, in my mind.

    I appreciate your drive to seek out answers and to confront those who fail to provide skilled care when presented with illness.

    Your life is a true example of how the fight should be carried on - never giving up and always learning and teaching others like myself.

    Thank you for you.

    Next week, I think we "go out walkin'... after midnight .... out in the moonlight..." as Miss Patsy Cline sang many many years ago.

    I used to walk for miles at a time because the body craved it, even tackling the hills of downtown Seattle was fun. Now my stride is so short and I am so weak I can't get through the flatland of Judkins Park across the street.

    What changed so fast in me that I am the essence of frailty at only age 61? More wisdom please....

    And yes Amallia, I do think life continues on for us.

    With more faith now than I had before. The blessings of life bring happiness and fulfillment.

    Dan / Seattle

  • Hi Dan, I think you are giving me more positivity. And I have always been someone who wants to help others, when I feel so useless now siting at home for 3 years, but it also distracts me from my issues and then I can stress a bit less if I'm having a bad day.

    Thanks xx

  • Hi Dan, hope your feeling better today, have been reading on here but just don't understand a lot of what is said, understanding this week or last week I've forgot is not great anyway. Haven't replied much as no thoughts or energy to. Hope all reading this feeling better then me if not this sucks. Love to all. Lisa. Xxxx

  • Hi Lisa-Anne, I think me and Dan have had a moment of clarity but I know for me it won't last long and we just touched the surface of something neurologists don't even understand. We were taking about just how complicated the brain is and I think crossed signals may cause a lot of our symptoms. You know when if someone is in an accident and they break the top bones in their neck those are the ones that not only control the top of your body from moving e.g. Arms, shoulders, but also that area if damaged affects your breathing and heart rate etc so it is the most dangerous injury. Think Christopher Reeves when he had his accident he broke those bones and survived but had to go onto a breathing machine and was quadriplegic. That little tiny area at the base of the brain affects so much of how we live that if it gets messed up it can affect everything from passing out to changes in heart rate, blood pressure etc. Also there is nerve that when stimulated actually causing fainting so maybe it is wired wrongly for us.

  • What you are saying now I understand, my neck and jaw that the chiropractor straightened, I had my first seizure in car park and left his practice in an ambulance, I'd completely locked up, was in agony, couldn't speak and just shut down. This was 2 years ago, have got worse and worse since. I was also struggling to breathe, I do remember the chiropractor saying to my partner (I thought this might happen but thought you would have got home first) I think he rang my partner twice since but refuses to see me again. There had been no improvement for me since that day.

  • Omg. I can't believe he said and did that, I'm shocked that he hoped you'd be home first.

    It should be you refusing to see him. And it's frustrating because for me if I was healthy I'd report him, but having FND and just the stress of having to go through that can be too much so they get away with bad practice.

    Absolutely terrible experience πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—

  • Hi, we never realised what he'd done or even that I'd had a un seizure in the car, its been a long route to find out what had happened to me and why. Which then explained the chiropractors distance from me. But as you say I'm incapable of doing anything about it as was one of my few memories left of what he's done and I'm in no state to prove it was him who caused how I've become. My partner guessed first but when he mentions it at appointments in the pass, he's just told we have no proof. One professional did say thank god he never touched you again. That's it. Xxx

  • That's awful..... honestly if he'd put his hands up say exactly what he did it could all go to your neuro to see if there's anything they can do to

    Reverse it especially as many of us have no idea where our fnd or our symptoms came from.... hugs hope you have a better day today πŸ˜πŸ˜€πŸ˜œπŸ˜πŸ˜†

  • Lisa-anne.

    Sending all the love from Seattle hoping you get a better day. Just take care of you.

    Blood pressure really down now and having problems. I'm sure it will all get better.

    Your true friend.

    Dan / Seattle

  • I hope so Dan as worrying for you and your family. Loads of hugs. πŸ€—πŸ€—πŸ€—πŸ˜ŠπŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€— Lisa xx

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