The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Who has autonomic dysfunction?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Kenjie, Apr 26, 2017.

  1. Kenjie

    Kenjie Senior Member

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    Please share your story
     
  2. anciendaze

    anciendaze Senior Member

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    I have a form of dysautonomia which does not usually meet the requirements for Postural Orthostatic Tachycardia Syndrome (POTS). My heart rate increases, but typically stays low enough to miss the clinical definition. What happens instead is that my pulse pressure (systolic - diastolic) drops below 20 mm. Hg. if I stand for 20 minutes. If this low pulse pressure were always true it would count as heart failure, which I do not have. I don't know exactly how low it goes because I gray out when it is below 15 mm. Hg. Part of the problem is that I may pass out. This kind of autonomic behavior is called neurally-mediated hypotension. (This does not always mean very low systolic pressure, and some medical personnel are willing to ignore pulse pressure as low as 10 mm. Hg. I don't see how that can move blood.)

    This started when I was in my teens, and continued during my time in the U.S. Army. Because I had a job calculating for artillery, I became very careful about symptoms showing that my brain was not working. Mostly, I can avoid actually passing out by careful control of fluids and electrolytes and time spent upright. From a psychological standpoint this is counted as "morbid concern" about minor matters of health, and "catastrophizing". Many years ago, when I tried to "push through" an episode, and woke up in the emergency department with a tentative diagnosis of a seizure, I learned an important lesson. I have not had that happen since, though I had to argue with an ambulance crew last year to avoid an expensive and exhausting hospitalization. If my last such trip to emergency does not count as catastrophic, I would hate to see a real catastrophe.

    The last EMT crew did take my BP when they arrived, although by that time I was able to stand. They also ran a quick EKG, which showed a steady heartbeat with no evidence of irregularity. I found they were more willing to believe in neurally-mediated hypotension than your run-of-the-mill M.D., who prefers to interpret the neural part as psychosomatic. They told me I could pass out at any time, despite readings that looked pretty good to me. I declined ambulance transportation to the hospital, and had a friend drive me home .

    I also have had an implanted vagus nerve stimulator for 10 years. When the episode took place last year I suspected the battery on the implant had died, and an office visit confirmed this. I have since had this replaced. This is not anything like a cure, but generally keeps me out of hospitals. When I was ending up in hospitals they would give me IV saline, after which they couldn't find anything wrong. (Of course I was also lying down.) This is evidence of hypovolemia not due to traumatic loss of blood. The suggested remedy is to drink more water, as if I did not know that. (I will also mention that I need to take a Salt Stick capsule in hot weather to go with the water. Electrolyte imbalance can also fell me. N.B.: Healthy people do not have to consciously manage fluids and electrolytes like a nurse in critical care.)

    When there was no evidence of a seizure disorder on an EEG, the diagnosis was changed to treatment-resistant depression, though it was still possible I was having absence seizures while standing, due to poor blood flow to my brain. Nobody seems to do EEGs with patients standing for 20 minutes. Insurance prefers to classify problems as psychological because this is much cheaper for them. So far, it looks like I am stuck with the substantial cost of replacing that vagus nerve stimulator, because powers-that-be have found that it is not very effective in treating "depression". The manufacturer is unwilling to admit they might be treating dysautonomia when doctors and insurance talk about "treatment-resistant depression", despite the well-known involvement of the vagus nerve in autonomic function.

    Over time I have learned that I, and members of my family, have characteristics similar to Ehlers-Danlos Syndrome, a connective-tissue disorder, though most would not meet diagnostic thresholds for a disease listed as having an incidence of 1 in 5,000. Dysautonomia is a known problem in this disease, though it is more likely to manifest as POTS in females and neurally-mediated hypotension in males. A wide range of more common pathological conditions occur at much increased rates in EDS patients.

    One problem here is that the most common forms of EDS do not show up with genetic markers in about 90% of patients, even when clinical signs are hard to miss. Another peculiar feature is that it looks like different members of the same family can have different types of the disease. A father who died of vascular problems had daughters who seemed to have kyphoscoliosis. Others may show hypermobility in childhood, but not as adults. I would guess that about 5% of the general population is in the kind of diagnostic limbo which falls short of traditional diagnosis, but has greatly increased rates of common pathologies.

    Although EDS is far from the only source of dysautonomia, it does show up in substantial numbers of patients. One simple direct cause is cervical spinal stenosis pressing on nerves in the neck, which can be verified with MRI. In some cases this can be relieved through surgery, though this seldom takes place unless the patient has failed to respond to years of treatment for "psychological problems". Here is an extreme example.
     
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  3. Johnskip

    Johnskip Senior Member

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    very interesting this all started with pressure and pain at base of skull and neck now when looking up I'm in my most severe pain and it causes pem
     
  4. anciendaze

    anciendaze Senior Member

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    You may also experience something called coat-hanger ache.

    I'm still trying to pull various ideas together on connective-tissue disorders like EDS and diagnoses like CFS. Multiple pieces do not fit with various popular hypotheses. Some things could be purely genetic, but should then be apparent prior to young adulthood, since most genes switched on a puberty would have effects earlier. I am particularly bothered by multiple cases with sudden onset following a "flu-like" illness. I'm also bothered that different members of the same family can exhibit different versions of the same general type of connective-tissue disorder. If we could track genetic markers this might be resolved, but most of those affected do not show known genetic markers, even when there are undeniable clinical signs.

    My current speculation -- and it is only speculation -- is that many people with clinical signs resembling those in patients with known genetic markers, but without the corresponding marker, could be experiencing gene "knockdown" due to RNA interference triggered by defense against parasitic DNA/RNA from viral infections, including some that are harmless for others. This would allow for effects on people whose exome shows healthy genes, plus sudden onset after viral infection, and for multiple forms of illness in close relatives because different genes are being "knocked down". I even suspect the sequences triggering "knockdown" might be in introns rather than exons, which would make them invisible to many tests. There have been scattered observations of shortened proteins in patients, with some subsequences deleted. Unfortunately, this has not been consistent enough to trace to either host DNA or pathogens. RNA interference could well be responsible.

    A different form of immune involvement would be due to autoimmune response, and we do find autoimmune diseases much more prevalent in patients with connective-tissue disorders. This could be due to sterile cell death caused by mechanical damage leaving your immune system with no culprit to blame except host tissues or harmless/beneficial organisms on skin or mucous membranes. At present a pure autoantibody explanation does not appear to work, which is why I am postulating RNA interference. Better data might change my opinion. For the most part I can say we simply don't know, even when we have strong evidence something physiological is going on. This is not a good basis for blaming a problem on psychology, unless you are talking about a problem affecting doctors.

    One patient with whom I have been corresponding just revealed that he has dermatographism.
    This is one indication a patient is in a small subset of the general population, but by itself is not conclusive of anything else. However, in conjunction with a long list of other known problems it raises the probability he has a connective-tissue disorder and/or mast-cell activation syndrome (MCAS). He had not mentioned this because he thought everybody reacted to scratches that way.
     
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  5. Sushi

    Sushi Senior Member Albuquerque

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    Can you tell us more? From your title it sounds like you have autonomic dysfunction. How does it manifest for you? Since the autonomic nervous system controls so many things, you might be more interested in manifestations like your own.
     
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  6. Kenjie

    Kenjie Senior Member

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    Interested in comparisons and peoples experiences with it.

    Ans is my suspicion but won't know for sure til can be seen at hospital in a few months.

    Hot flashes is a major one..
     
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  7. Johnskip

    Johnskip Senior Member

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    not sweating properly
     
  8. Kenjie

    Kenjie Senior Member

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    I get sweaty palms.
     
  9. anciendaze

    anciendaze Senior Member

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    @Kenjie

    You still haven't told us much about your particular condition, at least on this thread. "Sweaty palms" may be fairly normal, unless they occur under peculiar circumstances. This might also describe hyperhidrosis (means sweating too much, don't you love medical terminology?) There are tests of autonomic function more likely to be run at university hospitals than ordinary clinics which will actually measure autonomic control of sweating. One of these is aimed at finding patchy and uneven response that you may not even recognize as sweating. Another extreme is anhidrosis, some places may not sweat at all. That uneven response in parts of the body that are close together suggests nerve damage, as in MS, and can even indicate where a nerve is affected. This also brings up questions about parathesias -- localized numbness, tingling, shocks or pins-and-needles sensations. Do you have disturbances of balance or gait?

    We really don't know much about the clues that led you to suspect your own autonomic dysfunction. Does your heart rate shoot way up on standing? By how many beats per minute? Have you compared this with a basal rate measured lying down after you first wake up? Is simply sitting upright a struggle which raises your heart rate substantially? Do you see narrowing of pulse pressure (systolic-diastolic) after standing for several minutes? Does this correlate with symptoms like sweating or visual and auditory disturbances? Do you have "silent migraines"? (visual disturbances without headache, even negative ones resulting in missing parts of your visual field that your brain fills in with images extrapolated from nearby. In my case this was hidden by a wallpaper pattern which made me think I was looking at a blank wall when there was a sign right in front of me. Fortunately, this was transient, and went away when my brain got more blood.)

    Do you suffer from sleep apnea? Are there changes in your ability to swallow or digest food that might indicate problems with gut motility?

    Dysautonomia covers a lot of territory. I'm guessing that most of your symptoms do not reach the level of indicating neurological damage, but we need to rule things out before we go after less dramatic symptoms. A few people who come here have much more serious problems than most.
     
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  10. Johnskip

    Johnskip Senior Member

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    me personally I don't need no doctor to tell me I have ans damage I sweat in my head now compared to sweating profusely all over my body I actually feel my body trying to sweat my digestion is screwed up even though I eat the healthiest diet my heartrate used to be 40 resting now it is 60 my blood pressure and heart rate fluctuate all over the place when I went to university of Penn several times you know what they said if you down have pure autonomic failure we can't diagnose it and we have no testing for it do you know why they don't because there is nothing you can do when your nervous system is damaged hence you get conditions like me I believe where everybody believes there is going to be a cure I know there is symptom relief out there but total cure I have serious doubts I hope I'm 100 percent wrong
     
  11. anciendaze

    anciendaze Senior Member

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    What I said above was largely about neurological problems and actual nerve damage. Fortunately, many people with dysautonomia do not (yet) have irreversible nerve damage, (though I wonder how many with repeated episodes of nerve compression or ischemia might develop permanent problems later. You won't find much about prevention of neurological problems in medical literature. People I know who had a single episode that appeared to be MS simply avoided creating new problems and were eventually declared not to have ever had MS. As science this is not very satisfactory.)

    Another aspect of the connective tissue disorders mentioned above is that some forms are particularly known to affect vascular systems. This does not mean there is no effect on vascular health by forms with other labels.

    Two vascular problems which have shown up in patients who came to this forum were identified as thoracic outlet syndrome and superior mesenteric artery syndrome. (In extreme cases, called nutcracker syndrome, the latter can even result in blood in urine.) Both are caused by compression of important arteries.

    Still another problem with connective tissue, other than the hypermobility and stretchy skin that get doctor's attention, shows up in stenosis of important structures like the trachea. One correspondent who went through multiple sleep studies which showed some 90 episodes of apnea per hour was finally treated with reconstructive surgery. At this point he realized what nobody had said before: his trachea looked like a soda straw. This should never have been a diagnostic mystery.

    Other clues include problems with controlling fluids and electrolytes or blood sugar. Most of us do not have diabetes, but there are a fair number who have a weird response to a glucose tolerance test. In some this is so pronounced that I do not recommend taking such provocative tests.

    You probably don't have anything like this severe a problem, but we need to know so we won't suggest something that might harm you. Most of us are not doctors, and those that are should not make remote diagnoses or recommend treatments without actually seeing a patient. We are able to give the kind of tentative advice you might receive from other patients when you are dealing with a condition (dysautonomia) which the vast majority of M.D.s do not begin to understand. (We have had patients here with conditions at least as rare as 1 in 100,000. A typical M.D. will never have seen any such.) We first need to match you with patients we already know.

    Added: forgive me if I go on too long about connective-tissue disorders. These affect me and family members, so loom larger in my thinking.
     
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  12. Kenjie

    Kenjie Senior Member

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    December 2016 I had a strep and thrush infection. First I'd come down very tired and wasn't sure why so off to the doctor... And the infections explained it. Took 2 rounds of antibiotics over a month to clear it. But I was still going to the doctor saying I still felt off.. I'd started having lightheaded spells which only started as small and minor at first... And pressure as well as headache in my head and sinuses...which wouldn't go away...

    I thought I had sinusitis but medicines for that weren't doing anything. Then came the regular hot flashes and bouts of dizzy spells... I called an ambulance at one point who came out to my house but they weren't concerned and went off on there merry way.. I can recall a few times when these spels happened but I thought nothing of it til it was happening more frequently...with the inability to cool off and then drinking ALOT of water in an attempt to cool off...

    I changed doctor when I moved house in January... Then more severe hot dizzy spells came on.. I was still running to doctors who still weren't concerned... I'd also experienced a shortness of breath many times and walking to do anything was becoming an effort as I would feel off balance like I'm on a boat...

    Since then the hot flashes happen everyday or night now.. And now its to the point where I have that fight or flight feeling 24/7 the last few days in my chest even though I'm not anxious...I have to remind myself to breath and relax...

    Last doctor thought I had pseudo tumour cerebrai which is excess fluid on the brain...but that theory was canned after I'd been put on diuretics which helped a little but made me severely short of breath... I'd even walked into the hospital for help at the point.. 5 hours later they sent me home as all their standard tests were normal. I was frustrated I felt brushed off yet again. Anyhoo that doctor I was seeing reffered onto a neuro who's theory was pots or autonomic dysfunction. It was hard going in to see him cos I felt like I was going to pass out. This had become a frequent occurrence. So I'd gone back to that doctor who said she started to suspect the same as neuro. But she didn't try to put me on any further treatments.

    I changed doctor again two weeks ago who cannot tell me what is wrong but due to fast heart rate whether standing or laying down he put me on beta blocker metroprolol as he believes it will help me get better slowly over time. The beta blocker makes my heart ridiculously slow... Last night I clocked it at 43bpm whilst laying down. I saw him a few days ago on Tuesday but he said it was normal and that he wasn't concerned.

    I said but it does concern me. I said I don't doubt you but I'm really struggling st home and because I cried in his office he gave me a prescription for antidepressants for the anxiety. I didn't end up filling it as I don't feel that is the solution.

    This doctor doesn't seem to think there is a cause to all my symptoms which makes me feel like he probably won't further investigate even if I ask because all the standard tests have cone back 'normal' yet here I am at home still experiencing awful symptoms and struggling to do normal daily things. I can't even go out now cos I'll get hot n dizzy n then panicky.

    I could understand if it was just anxiety but it's not purely that. My body has been physically and chronically unwell and it doesn't take rocket science to work that out.

    What I want us to get to the root cause or diagnosis either way so that I can feel rest assured I'm on the right form of treatment...
     
  13. Kenjie

    Kenjie Senior Member

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    Other symptoms I've experienced ... A few weeks ago loss of appetite... Lasted a week or so... Lost weight... I quite often get queasy and nausea... Have had nauseous tummy again now since last night... Yuck feeling in gut..

    Fatigue.. Although not chronic fatigue... Still have pressure in forehead and sinuses.. Still get slight unbalanced feeling when walking... I had frequent low blood pressure which got quite bad but has curbed since taking vitamin b12 and D by my own choice.

    Exercise intolerance is another... Few months ago when I'd moved house I couldn't lift drawers without overextending myself and getting hot etc. I also ran out of petrol another time and pushed my car to side of road but then almost near fainted.

    I've had these near fainting spells in town too.. Like been a second away on the edge of keeling over... One particular lasted 30-60 minutes I had to lean over a shop counter and brace myself after I'd been getting hot walking around and tried to drink water to cool off. Ambulance was called by the shop but then my mum came in cancelled it n took me home..I ran to the car.. Put window down lay seat flat and balled my eyes out.. It scared the crap out a me...

    I had to move to my parents to help with son after only living in new house couple months...I haven't been able to walk him to school much so mum has helped there...

    Last couple days I've been feeling that constant fright feeling... And today I'm nauseous and lil lightheaded.. I just don't feel right..

    Lately I've spent most of my time in room..laying on my bed only venturing out slowly to go toilet or eat or shower.

    I remember in December when all this started it felt like I had a bug in my chest.. And sometimes even now it feels like I've got a cold even though I don't and my nose is clear...
     
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  14. Sushi

    Sushi Senior Member Albuquerque

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    Dysautonomia is one of the common symptoms of ME/CFS so, while you may not have the fatigue any more, this could be a continuation of your earlier problems.
     
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  15. Kenjie

    Kenjie Senior Member

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    Few months ago I saw an ENT who thought I had atypical migraine... He did not even use the camera up my nose to check my sinuses so I'm still unsatisfied with that theory til I see another ent and ask to use camera to check for sure...

    In 2014 I was sick all year ... But wasn't til one full yr at the end that anyone could tell me I had a chronic sinusitis..

    This time seems very similar to that although I didn't have the hot flushes back then.. I did have the dizziness and near passing out etc.

    I want to be thorough and rule these things out. But I feel like doctors just look at you send you home.

    I'm little concerned that the beta blocker is just masking the root cause. Bow can ya give treatment without knowing the exact issue?
     
  16. Sushi

    Sushi Senior Member Albuquerque

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    Yes, beta blockers just control symptoms, they don't treat the cause. Not to say that there isn't a place for them though.
     
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  17. Kenjie

    Kenjie Senior Member

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    This has occurred to me... I thought yesterday I may have had this syndrome off n on since having son 5.5 yrs ago.. Cos I've had awful time frames and I've had some good time frames.. Like a yoyo. It fluctuates.

    My hypothyroidism came about after giving birth... That brought problems of its own before starting medication some months later after diagnosis... I think it was 10 months of struggling before finally being put on levothyroxine.

    Always seems to happen after stress on body.. Giving birth was a stress on body... And then constantly battling viruses and infections is a stress on my body. If this is a factor then I probably keep having a reoccurring post viral type syndrome.

    I always got sick since my teens BUT I was 10 times healthier before having my son and functioned normal.
     
    Last edited: Apr 27, 2017
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  18. Kenjie

    Kenjie Senior Member

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    And I wish to add that ive had a ct scan on my forehead which did show 'debris' in my sinuses which is mucus but the report stated no concern for sinusitis infection..

    Yet I still have the pressure in my head. I recall having same thing in 2014. As well as pressure on bridge of nose.

    I'm a bit lost as to where to next. I've been chasing my tail.

    I'm on waiting list to see someone within the hospital but that's 3-4 months from now to do tilt table.

    I've booked another ENT appointment which is at end of June.
     
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  19. Kenjie

    Kenjie Senior Member

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    Have also seen optometrist who told me I have enlarged blood vessels in eyes although unsure if this is anything to be concerned about.

    In regards to pots I did a 24 hour catecholamines test which came back normal.

    Been doing research online on who to see.. What further tests to do and remedies I could try.

    Cos I sure as heck like any of you don't want to be like this. I want to keep having a normal life to some degree.

    Im scared of getting to level of actually fainting. I'm fearing becoming a regular fainter. Haven't fainted yet but because ive near keeled over I'm freaked out..
     
  20. Kenjie

    Kenjie Senior Member

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    Also constant dull ache in chest... Is this anything to be concerned about?

    Doctors aren't concerned when I've mentioned it
     

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