February 9, 2013 at 10:49 pm #3435
Did you stop-over somewhere halfway ? If so, what were you like after that part of the flight ?February 9, 2013 at 11:59 pm #3436
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,..February 10, 2013 at 8:13 pm #3437
Is it normal to have no appetite ? Did you still eat/drink in Bankok? Was it as hot in Bankok as it was in Oz ? Us POTSies don’t tolerate heat very well at the best of times.
Are you managing to eat any better ? Have you managed to increase your potassium and get multivitamins ?
(UK)February 11, 2013 at 1:33 am #3439
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!February 11, 2013 at 6:33 pm #3440
My myoclonic jerks (like an electric zap from head to toe) started within an hour of my accident (head and neck injury). I still have them albeit to a lesser degree (not as ‘intense’) more often at night but still get them through one limb or another during the day. They appear much much milder now though, 10+ years later and barely disturb me, if at all.
I think part of our problem is that we release too much adrenalin when something like this happens (yes the ‘fight or flight’ mechanism does overdo it somewhat). I can’t get to sleep for ages if a noisy car goes past – how daft’s that! When did your myoclonic jerks start ?
(UK)February 11, 2013 at 8:50 pm #3442
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!!February 11, 2013 at 9:32 pm #3443
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!February 11, 2013 at 10:40 pm #3444
I’m glad you’re getting some sleep at last and the diarrhoea’s stopped. When we eat, blood is shunted away from our peripherals so the stomach gets a much richer supply. If you are going light-headed, maybe this could be one reason, though your brain should take priority in a normally functioning body. I think your intestines are helped by movement, so laying still won’t help in that respect. I don’t get much abdo pain, so I cannot relate to that. What have the doctors said about your progressive lack of appetite through December and the more recent guts issues?
Did you watch Dr Diana’s latest video on Magnesium ? I have read about this before and did try a supplement many years ago, when my heart was worse and it may have helped many aspects but, it did increase my arrhthmias at the time, so I put it to one side. I have more recently started having Epsom Salt baths to help supplement this. Your lack of nutritional intake, will have depleted your levels of many things, not the least magnesium, it may be worth having a ‘soak’ in epsom salts, as you’re not managing much orally (if you have the energy that is!)
The jerks have been the least of my worries and so have the twitches (fasciculations), although it did point to something ‘not right’ going on in my muscles. The depths of pain have been horrendous, though it’s much better managed now. I was a fit and active 48 year old when all this happened, working self-employed as a systems analyst during the day and property developing at evenings and weekends when I wasn’t out dancing the night away. I had strength and endless energy. I’ve always liked to be busy, I’m not one for sitting around doing nothing, so adapting to the consequences of all this has been a great shock to me!
I’m sorry, I’m not a great believer in psychology in the first place, all this airy-fairy “if this hadn’t have happened 30 years ago and that hadn’t have happened, etc” stuff, I can’t abide with it. I’d say, how come it’s not affected me for the last 30 years! I’m a Maths and Science type of person (the switch is either “on” or “off”, if you get my meaning). Everything has physical cause and effect, I want to know what happened in that accident that has caused this malfunction in my body, so I can effectively put it right and get on with my life. I won’t accept defeat until I draw my last breath. This is just a puzzle that needs solving – and I like puzzles.
Life was really great before my accident, I wouldn’t have changed a thing, then it happened (and no amount of dwelling on it could ever change that fact), nor will I ever accept that this is my ‘lot’, until I have checked every possibility, I believe in being pro-active. In the early days, when I was reporting new symptoms every few weeks, my then GP suggested I consult a psychologist (what an insult!) but there again it is the cheaper option from an NHS point of view – I think they call it ‘file 13’, or ‘the waste-basket diagnosis’! So, I agreed to an assessment just to prove it wasn’t psychological, sure enough my GP received a letter saying that they should be looking for physical causes – yeay!
I once had a consult at a regional pain clinic and the consultant told me that they could not offer any advice other than what I was already practising, so that was a bit of a waste of time. With regard to attending pain groups, I do go to one from time to time, when I can but I find it disheartening, when people are encouraged to accept that their ‘fatigue’ is psychological and there’s little to be done about how they are – when there’s plenty that can be done about it! We may not be able to achieve perfection but we can regain more than a little, I’ve certainly seen many improvements through better management.
Yes I’ve been to the extremes in anger, frustration and despair (often) with all that this condition brings but dwelling on it doesn’t help. It has stolen my physical ability, I will not let it steal my mind!
(UK)February 11, 2013 at 10:49 pm #3445
No, not had trouble with my jaw, although it does ache from time to time if I’m eating anything that takes a lot of chewing, like nuts, I get jaw fatigue. I’m not very hypermobile at all, so I don’t suffer subluxations, dislocations or the like. There are quite a few things that I haven’t had trouble with that others seem to suffer.February 12, 2013 at 12:30 am #3446
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.
RichardFebruary 12, 2013 at 1:31 pm #3448
I’m curious, do drinks have the same effect as food, i.e. hands cold & clammy; tachycardic; nauseaous ? This is like a ‘heart under stress’ reaction, isn’t it ? I am wondering if you have vagus nerve compression in your neck. I know you are on Dr Driscoll’s website but are you aware of the Driscoll Theory ? I’ll try and be brief, to simplify it, I’ve called it ABC (forgive me Dr Diana for putting my own ‘spin’ on it!). Dr Driscoll has theorised that what we are suffering from is the combination of the effects of the following, on the body:-
A = Allergen dysregulation
B = Brain compression
C = Circulatory issues
Basically it’s the combined effect that allergen dysregulation (mast cell activation), brain compression (from external communicating hydrocephalus) plus circulatory issues (for example ‘backed-up’ venous drainage) has on the body.
I wanted to bring that to your attention because one of the points, which Dr Driscoll has brought to light, is the fact that many of us have an enlarged Interior Jugular Vein (IJV). This vein, at some point, is encased in a bony chamber alongside 2 other structures, the Carotid Artery (CA) and the Vagus Nerve. Now the Carotid Artery has a higher pressure than the IJV, therefore cannot be compressed by the enlarged IJV, so the Vagus Nerve cops it! As you probably know, your Vagus Nerve controls your heart, your lungs, your stomach, your intestines, your kidneys, etc – do you see the connection ?
When you get your Head/Neck MRI back tomorrow, check out the width of you IJV. Just a thought, if your pulse pressure is very low, maybe your carotid is copping it a little too! – or maybe that’s not possible, I don’t know.
If you’ve been sweating (and excreting) excessively, whilst being unable to intake nutrition, chances are you could be deplete of several minerals. This could be why you jerk and have fasciculations. My injury caused ‘autonomic governance’ malfunction due to intermittent subtle brainstem compression, the first sensory changes were tingling; then numbness where it was once tingling; then (horrific) pain where it was once just numbness; then fasciculations. This started distally (hands and feet) and over weeks and months worked towards my body, eventually affecting my abdomen, then head, face, tongue (scarey) etc. By this time the fluctuating raised intracranial pressure had started to flatten my pituitary and I was suffering from obvious signs of dehydration and other hormonal problems.
I had no idea that I had EDS III before my accident, as it had no impact whatsoever on my life, other than making me appear younger than I was (bonus!). At 48 I was strong, fully functioning and free from pain. As a child I went over on my ankles (and knees) a lot but this resolved by my teenage years. My Mum could do the ‘thumb to wrist’ trick but I couldn’t. It was only when trying to figure out why my neck ligaments hadn’t healed, after the first 3 months of wearing the collar and brace, that I started looking into it. I don’t think it was helped, by the fact that I had gone 5 years after the accident, before I was put into a collar though!
When I was a child our NHS system was envied by the world, there was no discipline-dissociation, budgets, targets and all that rubbish, just straight forward multi-disciplinary caring. Although I embrace change, it needs to be an evolution of tried and tested mechanisms – not some young upstart who comes in and says “I know, let’s change everything and do it this way!”. Oh don’t get me started on the medical profession – it’s mismanagement at it’s worst!
Having suffered from extreme fatigue, I am certain it’s roots are organic and I’m working on this at the moment. It’s a gross injustice, that fatigue sufferers are treated (or more accurately ‘mistreated’) with ignorance, contempt and disdain. These people are not just ‘couch potatoes’ who can’t be bothered. It was called Yuppie-flu at one time because it was affecting young, active, enthusiastic, go-getters – ‘Type A’ personalities.
Your MRI may come back as ‘normal’ tomorrow, or it may come back read as normal by someone who doesn’t know what to look for !
These are the questions that I would additionally ask the radiographer, given opportunity:-
1) Is there ANY degree of low-lying cerebellar tonsils (no matter how slight)?
2) Is there ANY flattening of the pituitary gland (which should look like a cherry, not a pancake!)?
3) Is there ANY level of excess fluid interstitially in the brain?
4) Is there an excess of CSF fluid in the subarachnoid space above the brain?
5) Could there be mildly enlarged ventricals?
6) Could there be mild cistern engorgement with CSF?
7) Could the Corpus Callosum be slightly flattened?
8) Is there a retro-flex odontoid (the top of the peg-like cervical bone, which bends backwards)?
9) Is there a pannus alongside the odontoid (sign of craniocervical instability) ?
10) Are the backs of the eye globe slightly flattened?
11) Could either Transverse Sinus be stenosed?
12) Is either of the Internal Jugular Veins enlarged?
I wish you ‘All the Best’ for tomorrow and on your flight home – wise choice the airport assistance and wheelchair.
(UK)February 13, 2013 at 2:15 am #3449
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)February 13, 2013 at 10:25 am #3450
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.
Yes, I suppose it could be the lightness of sipped drinks that make it tolerable as opposed to continually drinking soup – OR, and this would be my bet, the fact that you look down to eat your soup.
(UK)February 13, 2013 at 10:29 am #3451
My MRI did come back clear, sent straight back to GP, now GP in process of writing a summary for me to bring home. . . . . 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 . . .
I would because subtle signs are so easily missed, what have you got to loose, they can only say “no”February 13, 2013 at 11:59 am #3452
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.
Yes, like Dr Diana, I am researching, using my own body ‘comfort’ as a measure of success. I was studying my levels of pain and looking for ways of reducing it using better management, without having to take painkillers all the time (which didn’t work anyway, as they only addressed pain to a very superficial level). The pain I was suffering wasn’t just one pain, it was various types of pain, bone, joint, muscle, etc suffered concurrently, all triggered by different things and I was trying to isolate each of these and their causes, for better management.
Some pains I woke up with and needed movement to alleviate, some needed fluids, some needed stillness, some needed warmth, some needed joint support, some needed a correction in posture, some needed avoidance of particular action (like holding arms up!). I realised that any level of exertion triggered pain too (either at the time – or later!), whereas just remaining upright brought on a full body discomfort which was immediately alleviated by sitting down and I (or the scientist in me) needed to know why all of this was happening.
One of the pains I attributed to muscle fatigue, it was so bad that I could only use my exercise cycle for 30 seconds before lactic acid pain set in sharply in my calf muscles! I had to stop and wait for it to dissipate before continuing. Each time I continued, the length of time I could pedal got less and less. This test was repeatable and consistent. Using that as a benchmark I ventured into the realms of chronic fatigue.
I wondered if it was autonomic dysfunction causing it, or something more at cellular level, so started looking at mitochondrial function (or dysfunction, to be more precise). Anyway, I paid to get tested and you can see my results in the post titled “The Chronic Fatigue Element” (slap it in the “search” box above if you need to know more detail). Basically lots of things were happening (or not happening, as the case may be). So I am taking on board the recommendations bit by bit to see which brings a changed result.
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