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I assume you mean when I first presented with discharge and loss of hearing to ENT 18 months ago? I had a combination of steroid and antibiotic (also had a polyp in there), the steroid the consultant put direct in the ear and had antibiotic drops to administer myself. I also had a course of amoxicillin, which made no difference, then co-amoxiclav, but this was from GP’s at the walk-in centre prior to getting the referral and treatment with ENT above…
Funny enough my CT/MRI reports both stated they could see evidence of my canal wall down procedure indicative of mastoidectomy, but also that soft tissue was in the ear cavity on superior aspect of tympanic membrane, with ossicular chain distortion. I can see this easily on the CT/MRI myself. However the report doesn’t say if the soft tissue is a result of the grafted membrane, or is infact some regrowth of cholesteatoma or residual disease. My guess is they will say it could be either, so a second, more exploratory surgery will be necessary. Was hoping to avoid, I know dysautonomics do not handle anaesthesia well (I was tachy and v nauseous after first surgery). Anyway one bridge at a time!! Anyway, its unlikely my symptoms are related to this in any way, unless fluid in the ear is causing some dizziness.
I’m just looking at what triggered your dysautonomia to suddenly render you so ill. I can’t help but think that infection is involved somewhere and could be ‘sorted’ with anti-biotics. In my book, something has substantially affected your intracranial pressure. There again, I suppose a blocked ear would only give you one mechanism by which to adjust to the change in pressure.
Yes I have been wondering why on earth now. I thiink it could have started about 18 months ago. It was around the time I was having my ear troubles, a nasty discharge and a gruesome looking ear, with polyp, led me to ENT. I had an infection, which they treated. A few weeks after this I started to develop dizziness (which I hadn’t had during the infection, though cholesteatoma was present), plus coming over peculiar during or after eating. The latter passed but the dizziness continued sporadically prior and after my op in April. Last year my headaches increased in frequency and intensity, and now and again I’d have days of bladder frequency. Then in December I was getting mild discomfort in my chest, this discomfort creating the sensation to cough, lump in my throat sensation, start of appetite loss and weight loss. Then boom on landing it all took a nosedive getting lots simultaneously, plus the new symptoms (neurological). Tests don’t reveal any significant infection, I look ok if thin on some days, then pale on others. I take my temp twice daily and it has crept up to 37.5 on a few occasions otherwise it hovers around 36.8-37.2. Not necessarily abnormal. Don’t feel feverish as such,. Many people have asked me do you think it’s your ear, the change in cabin pressure etc. It could be seeing I was ill on arrival, though it didn’t happen during my Bangkok stopover. I also came to Australia the previous Christmas and new year too, pre-op, and experienced no probs. but I was definitely less well preceding this current trip and therefore weaker maybe. That could be the answer…. I may see if I can see an ENT specialist before I fly, just to see if ear looks ok, no signs of infection or fluid. GP said it looked ok, dry etc, but not sure they have much clue. The symptoms when I look down in flexion come and go too!! All a mystery. With cholesteatoma, it can erode bony structures in the middle ear. Mine hadn’t prior to surgery last April. It can also erode the thin plate of skull superiorly, and that can lead to exposed meninges. Thats what makes the condition dangerous, risk of brain abscess, meningitis etc.. I’m hoping that would have been seen on my MRI/CT though. Would be unlikely given they removed disease, but regrowth can occur. It does affect you psychologically, losing confidence.
I shall have a look at Dr Myhill’s work. It’s intriguing. You would think her work would have far reaching implications for all chronic pain syndromes. Can I ask what treatment you were given? Are we talking replacement enzymes, that sort of thing or more functional treatments? Is beyond me….
My GP looked in my ear, said it looked ok. My operated ear does feel a bit squelchy and full have to say. Do I just go the whole hog (I’ve spent enough, it’s not free here, surprise surprise) and have a consult with an ENT surgeon, get him to look at ear, plus reviews scans. Funny enough my CT/MRI reports both stated they could see evidence of my canal wall down procedure indicative of mastoidectomy, but also that soft tissue was in the ear cavity on superior aspect of tympanic membrane, with ossicular chain distortion. I can see this easily on the CT/MRI myself. However the report doesn’t say if the soft tissue is a result of the grafted membrane, or is infact some regrowth of cholesteatoma or residual disease. My guess is they will say it could be either, so a second, more exploratory surgery will be necessary. Was hoping to avoid, I know dysautonomics do not handle anaesthesia well (I was tachy and v nauseous after first surgery). Anyway one bridge at a time!! Anyway, its unlikely my symptoms are related to this in any way, unless fluid in the ear is causing some dizziness.
Anyway medicine yes, I qualified but didn’t pursue a few years back. I have been chatting to Dr Diana about this, and I believe that due to bubbling autonomic problems I had much lower threshold for stress. I didn’t last long after qualifying, which is sad after training so long and believing I could be one of the good ones. I’m definitely human. I have done various things since, but gradual decline in health and depression has prevented me making any strides. I have worked in healthcare but more in nursing roles, phlebotomy etc. also did a few alternative medicine qualifications (nutrition, stress management)…..seemed a great idea at the time! Now that I am 40 I would rather be stress free and at least moderately contented than being stressed and miserable. I have ruled out now a return to medicine. A few of my friends were my peers at med school, but nobody with whom I could contact regarding this. However, given the fact I still have the title dr, when I get back to the UK I will approach a few consultants who might be interested in listening to our difficult plight. I would love to undertake a retrospective study with long term conditions and look at the course of their illness, maybe with a view to looking at prognostic factors. Some qualitative data would be good to assess patient’s own experiences.
Did I tell you when I saw my GP, he wiki’d dysautonomia with me there….brave man! That’s the worst page anyway, don’t even think it mentions the importance of POTS…etc, so you can imagine the people who have been dismissed due to having a constellation of symptoms…oh it’s just a bit of increased sympathetic drive and anxiety, breathe deeply, take a pill!,
Yes quite possibly, that’s why they recommend that POTS patients eat little and often to prevent major blood diversion to the gut!
Fascinating about your mitochondrial function. I never new there were tests that specific!! All the tests were abnormal then. So were you formally told that your general fatigue and impaired exercise tolerance were due to of mitochondrial function? Makes sense….. Is there nothing that they can do?
I’m having an autoimmune test (ANA) as a last blood test, to rule other causes. Funny GP today said yes to me saying it could be autonomic dysregulation. At last! He did say its something you need to sort when home! Cop out! Mind you when I told him I studied medicine some years back, his approach changed!
Great reply, thanks for that. Just to say that no I don’t get the fast heart rate, clammy and cold hands, and instant nausea with fluids, only with food. I did get it with soup once, I did think whether the fact that I was looking down at it with head in flexion had anything to do with it at the time. I have tried to eat a little more today, and I mean a little (still way short of what I should be consuming) and didn’t quite have the tachy, sicky feelings, but lets just say my stomach feels like lead now! Not great with having to consume at least another meal. All a bit perplexing.
My MRI did come back clear, sent straight back to GP, now GP in process of writing a summary for me to bring home. It is likely to say anxiety is at the core of this. I didn’t see the radiologist when I was having MRI on Monday, just the radiographer. I just wondering whether I should ring the hospital dept and just ask a few questions about things easily missed? I know it is not standard practice for patients to do that but your list of potential possibilities in your last message might spark some interest with them maybe!! Minor/minimal change does not seen to interest does it, needs to be absolute! I know that some of my problems now must be nutrionally related, but I shall reiterate something made me sick in those early days!! I went to ER twice, with chest pain feeling and i felt it was hard to breathe. As I sit hear writing this now, I still have a stinging sensation in my chest and n awareness of needing to breathe. I’m very much with Diana on the fact that we all save anatomical weaknesses, EDS or not, that when exposed leads us to get sick.
I sat in the sun today, just for 10 minutes on balcony. Not sure it the weight loss but my were veins bulging!! Soon as I elevate, gone! Another sign I’m sure. It’s important I guess to not attribute every single thing that happens to us as related to POTS! Bit of a trap that. We are still exposed to external factors that can make us ill, I guess having dysautonomia just exacerbates whatever that problem is.
I probably need to do a genetic screen when I get back just to rule out possible causes. It may be that it’s a chronic illness sparked by a virus or one thing else with an autonomic component. I’m fatigued, though more so as sleeping been so disrupted. But still could be a CFS or Fibro. I dont particularly have features of EDS, but then could be affecting me internally more than externally. I know the vascular type is very serious. Though I am pretty sure by age 40 I would have experienced significant problems already with that type. I have not read anywhere that autonomic dysfunction has an idiopathic onset!
You mention about working on the organic basis of fatigue in these conditions? Are you doing some research? You basing it on your own experiences? The fatigue must be difficult to quantify in some people, seeing as some people’s fatigue is made worse by the hopelessness they feel with their symptoms. Very interesting though Barbara. Wish more was being done. POTS has some recognition now doesn’t it but the number of specialists is very thin, and GPs, the blank looks say it all. Increased sympathetic drive is always due to anxiety only in the absence of actual nerve damage! Yes in some cases, not all! By the way when I go home, I will go to my GP, see if I can get a referral to a cardiologist who has an interest in autonomic dysfunction. There is one near me in Bristol, though also the one e in London you mentioned too (not much choice!). I reckon it’s so under diagnosed because GP’s have no clue!
I was thinking of delaying my flight another week to see if I can improve a bit, but not too hopeful 6 and a half weeks after I get sick. Don’t think it works like thus with dysautonomia! Sadly!
(Melbourne, Australia..soon to be Bath, UK)
Yes, the basic physiology is that when a person eats, more blood is needed in the GI tract to aid digestion. If its a large meal then this requires more blood still, and so even in normal functioning folk this can lead to post-priandal fatigue. This is very logical. I’m guessing though this response is more exaggerated in the POTS/dysautonomic person, as less blood is available for the brain. I do sometimes go lightheaded after eating. However, as soon as I eat anything, just small amounts and often bland foods, my hands go cold and clammy, I go tachy, I feel instantly like I went to throw it back up. These feelings can last a few seconds to several hours. I get the abdo discomfort a while after. So unsure whether my gut is getting enough blood to digest, or whether its a neuromuscular problem. In the end I do digest but unsure whether its delayed emptying from the stomach due to nerve dysfunction, or whether its all bit hyperactive. Have a lot of gurgling at times. I’m a bit perplexed. I’m doubtful the gp will know, I think we know a bucketload more about this than they do. I think they think the ANS starts and stops at fight/flight. Duh! I did mention to the gp about my lack of appetite and generally not feeling well in december but I think it’s got lot amidst a sea of other info. I think he is only concerned that I don’t have anything that is considered a problem for flying!
I haven’t watched Dr Diana’s video yet, but I will. My magnesium was normal on blood test but I remember our point on intracellular v extracellular levels. I think my reading was at low end of normal. Thanks for the Epsom salt bath suggestion, i will have to research that more when I am back in the UK.
Do we know why we jerk and have fasciculations? As skeletal muscle is part of a different nervous system, I’m unsure of the connection. The best link I can see is that we are for various reasons prone to dehydration and nutritional deficiencies, which can cause twitches. I’m guessing though that your injury might be more of a factor with you?. You damaged the spinal cord? I’m jerking distally mainly so calves, feet, forearm, hands, oh and like I mentioned I feel like my abdomen also does it, prob the stomach muscles. This is more unsettling than the limbs.
It sounds like this set of problems have had a profound effect upon your life, being so active beforehand. Were you diagnosed with EDS after your accident? What type as you not particularly hypermobile? Sorry I’m sure you have answered or mentioned bout this in other posts. I guess you have to get on with life and search or answers! Despite great work they do, the medical profession is limited. If things don’t fit a neat (ish) box then things go awry. Rather than trying to fit diagnoses around people, there needs to more fitting people around diagnoses. From that I mean don’t cast a patient aside because there is no clear cut diagnosis. I hate the general stigma that is associated with CFS/ME/Fibromyalgia. To these people their pain is real!
I do agree that psychological reasons for illnesses are over emphasised in patients in which an organic cause can’t be found in tests. I do believe that some psychological input can be beneficial to some people who struggle to cope with their pain or disability. Some people panic and become over anxious, so tackling anxiety means reducing the flow of adrenaline, improving sleep, and this could have an effect on fatigue and overall pain. In your case though Barbara you have more than enough defined in your illness profile to justify why you have had so many symptoms. Long way to go for scientists. Doctors only seem to see autonomic dysfunction as being related to actual damage to the nerves, such as physical injury or diabetes. I believe the dysfunction seen in POTS or other conditions, relates to a pathological process, akin to that of MS in the CNS, it just hasn’t been discovered yet. These nerves misfire for a reason! But as all these nerves are hidden, there is little interest. Very sad.
MRI back tomorrow, I expecting it to be normal, will see. Of course you can fly home ‘Richard’… I have organised wheelchair assistance at the airport. Not going to walk across big airports feeling fatigued with orthostatic intolerance!! Recipe for disaster.
Just one more question, do you have dysfunction of your TMJ? I’m wondering whether I am…. Prone to anything I guess aren’t we, whether directly related to dysautonomia or not!
Gosh Barbara it sounds like you have suffered beyond belief over the years! I am glad most of your symptoms are not as bad now. It is a testament to your character that you have survived, and survived to give advice to others.
My jerks started shortly after my first 2 A&E trips, so very early in the holiday, early jan. At the time, because I hadn’t realised it could probably be autonomic dysfunction, I had thought maybe MS, or probably because I was undernourished, but not to the degree I am now. It was different then though, more tingling in my left hand and feet, heavy left leg, but with abnormal sensations in a lot of places. Even my right eye did this electrical thing. Not had that since, though have a sensation, again more in right eye, when I close my eyes. A pulling sensation. All very odd.the jerks have been more noticeable recently, twitches in the lower limbs most common. I do think my abdomen is twitching in much the same way, especially at night. I can hold my hand or foot up and they all move!! I did thankfully sleep better last night, close to 8 hours (BIG REFIEF)! Golly the night before, I felt wired! And the more I couldn’t sleep, the more uptight I became, surging more adrenaline. It was intolerable have to say. The psychology of it all plays havoc with your recovery.
I’m still wondering what is happening in my belly. I can’t seem to eat anything without feeling nauseous immediately or shortly after. On the whole it is worse in the evening. I am wondering if it to do with being so inactive and being horizontal so much,, that my stomach is getting used to no or little food to work with, plus inactivity has slowed the muscles. Or, have I developed a true gastroparesis. I am unsure. Is the abdo pain to do with this, or is eating having the opposite effect, making it a bit hyper mobile. I have had diarrhoea, though not last few days. Not sure whether to try metoclopramide see if it helps, I have a prescription for it. I will literally waste away if I don’t do something, I could literally never eat again! Of course eating exacerbates the light headedness. What a horrible problem this is, and for doctors to only really recognise it as overactivity of the ANS, anxiety driven etc, is well…um.
I have lost confidence though no question. I considered myself a healthy ish happy 40 year old. I’m now confined to a small studio apartment, only going out to appointments, being driven there. Get motion problems within minutes, hot, clammy, tachy. I resist vomiting, I have learnt to do that! Anyway I just wondered with all that you have been through and your list of problems, what psychological support or input have you had? Have you ever been asked to attend a pain or chronic illness management programme? They can be good for meeting others but am aware that the crux of it is to get you to change the way you think about your illness, and that will have a knock on effect on how you behave. Easier said than done when you want to pass out when you stand and feel so sick on eating, or feel like your body is exploding with electricity etc etc….. Don’t think my jerks were like yours though, yours sounded truly awful! I can cope with mine as long as they don’t make me an insomniac!!
Hi Barbara it is easy quite normal to lose appetite when you cross time zones, more likely the more zones you cross. I ate very small amount in Bangkok, but did drink yes. Slept quite a bit. My appetite had been on the slide through December, couldn’t see a trigger. I was eating less and continuing to do moderate exercise. a possible trigger I wonder? It was hot and humid in Bangkok but was there 24 hours and only spent an hour out if the hotel room. Problem was on arriving in Australia, but it was just a warm day that day, about 22 degrees, not like some of the hot ones I have experienced since.
I am still struggling to eat! Will have to force feed and if I can’t keep it down I can’t. I have lost about 8-9kg in 6 weeks, was weighed today. Sleeping so bad at the moment, the myoclonus really gets in the way. I drift off and just as I do the jerks wake me up. Not sure this is normal but it sucks! Probably the worst symptoms because without good sleep its impossible for dysautobomics to function. I am taking in a banana though and a multivitamin yes. I saw a different gp here today and he was well clueless. It felt like she didn’t understand the terminology! She concluded anxiety. She wondered why I had had so many scans. It is easier to get them here in oz though. I was presyncopal again in the waiting room. I might have to take a Valium tonight though if the lack of sleep continues…..unless the myojerks continue!!
Had MRI and head CT). Results in 2 days, with cd to bring home, so quick!
Yes, stopped over in Bangkok for one night, I was tired, had no appetite, but I was ok. I came out of the-airport once in australia and on the ride to hotel started to feel ill, like an ill switch, and ill ever since,, gradually worsening really,..
Barbara, not sure I mentioned but I am flying business class, so the seats recline to near horizontal. I am lucky in that sense, and it might explain why I was not symptomatic on the plane on way over, but when I came off it I felt motion sick in back of a cab, plus a look of death!!
Ok well first job is to convince him I have significant autonomic disturbance, not anxiety, and then second challenge is to get him to prescribe. Ok well thanks for all your advice again 🙂
I started the ZZ 5 days ago. I did have an improved couple of days, but the last two have been bad, exacerbated by the lack of sleep!, and then on waking each time having these visual sensations and dizziness. I shall continue on them though and hope it improves. I think I need diamox but without evidence I am not sure I can convince the gp to give it to me, I haven’t checked but I would be surprised if the gp was licensed to prescribe it.
Are sleeping pills good or bad for us? I had considered asking doc for some benzo’s for the flight but not sure it’s wise, and maybe to just try Benadryl (for sedative effect)…
Just took my temperature, at 1.45pm, sublingually, 36.8 on the left, 36.6 on the right. Replicated it 5 minutes later. Just another thing to add to the long list of things that are just off!