[Henry40]

Thanks for your replies ladies….

I see gp to get results of MRI on Wednesday so I will ask about temperature and get him to look in my ears. I do take my own most days, so OCD lol, and actually during the day it can range anywhere between 36-37.5 though this is with oral thermometer. It probably dips below 36 in the early hours, though that is normal I guess. Saying that i reckon i have more variation rhan most. Funnily enough I have taken my temp under my tongue on the left and right side and it is almost always different, either by .1 or .2 of a degree. Doctors are only interested in absolutes really, if I am not pyrexial then i am fine. Mind you as anything over 37 is considered a fever, I regularly have low grade fevers. But is that a variant of normal? Is it due to problems with the hypothalamus? Just don’t know.

I am playing detective a bit and trying to work out if I have developed a chronic illness like ME/fibromyalgia with significant dysautonomia, or whether I have an undiagnosed genetic disease. Or is it idiopathic!! Looking forward to seeing my gp’s blank face when I m back in the uk when I tell him I think I have developed a significant dysautonomia! When I mentioned it to the gp here in oz he mentioned the flight/flight response and panic! There certainly isn’t much knowledge out there.

I’m sure the answer will be yes, but sleep dysfunction, exacerbates all symptoms, but in particular the orthostatic intolerance?

[Henry40]

Hi Barbara
I shall look into these options when I get back, the collar and diamox. Some of it will depend on results of the MRI etc….but I am certainly going to try anyway and the home made tilt test.

My cholesteatoma was confirmed on a CT scan, they couldn’t see it through the ear canal as it was a bit of a mess. Had a polyp in there too. Been feeling pressure in this ear a lot lately, and to a lesser extent the other one. I do wonder whether flying, albeit 6 weeks ago, influenced this, but as i am confined to indoors with such hot weather outside day and night(30s by day, low 20s by night) the air conditioning is constantly on. I’m thinking this might be playing a role. By way my CT scan was only of my ears, I saw it and there was nothing of my brain just area around my ear. I am due to have an MRI as it will soon be the one year anniversary of my op, with a view to second look op (often a pearl of cholesterol a can grow back). I’m dreading this seeing as how bad I feel.

One thing I am now very concerned about are my blood pressure readings. They do seem to alter with posture and with each arm, right are more worrying, where I have more symptoms. I have a collection of readings with a narrow pulse pressures under 30, including a few under 20. BP this morning was 105/87 whilst sitting, then standing it was 119/83 which was better, though sitting to standing can vary, and the can systolic drop also. I’m actually less concerned about my heart rate at the moment and more about my BP. Infact I had one reading today of 107/97 whilst seated. A little OCD now, but I think this disease or whatever it is certainly does that to you. Other readings over last 24 hours include 107/82 and 114/82 on seated, the latter in left arm.. On standing 119/83 and 105/79 etc….. I get the feeling that despite having 3 normal ECG’s over the last 6 weeks, though been 4 weeks since last one, that my heart is really under distress, worryingly so. I have had more chest pain over the last week, it comes and goes, but was more intense yesterday like right at the beginning when i arrived in australia 29th dec. My diastolic readings are high, in the 90s, it is like the pressure in the ventricle when the heart is relaxing is to high, therefore reducing cardiac output. Could this therefore be explaining most of my symptoms? The chest pain, the dizziness, the faints, headaches, the freezing hands (especially the right), the bowel and bladder disturbances, the twitching everywhere, but visibly in fingers and toes. I am drinking well, and peeing small volumes often 12-15 times a day). I just wonder whether my whole body is being hypoperfused, coupled with a lack of nutrition (my toenails are going brown!). Do I need an urgent echo? I already think the doctor thinks I’m bonkers, did I mention that he said that word ‘panic’ with reference to this! Typical. Just not sure whether I am sitting on a ticking time bomb here. When gp looked at my list of BPs I think he just saw that my systolic readings were much lower than they had been in surgery, and my diastolic readings not overtly high (except for last 24 hrs which gp hasn’t seen).I think perhaps him not knowing the significance of narrow pressure, I mean readings that low are not usually primary care issues but ones of trauma and a&e, when patients are in shock or close to arresting. My BP machine works as when i was with gp last tuesday we tested it against his machine and it was almost identical. This pain in my chest, the clicking or dislodging sensation I sometimes have, could be the signs. Oh dear, not sure what to do. I’m sure you will agree with my concerns….

By the way did you always get high diastolic readings and narrower pulse pressures when you had chest pain?

Anyway thought I would run it by you.
Thank you
Richard

[Henry40]

Do you find your BP has or had a narrow pulse pressure? I am having some concerning readings, although doctor didn’t pick up when I showed him my home recordings. You just not sure out of all this what should be a concern and what not! My readings have been 105/92 or even 98/86. Wonder if this down to dehydration, or some kind of diastolic dysfunction. Mmm…..it is such a complex set of problems. And irregular breathing….chest pain….nightmare Barbara

[Henry40]

Thanks Barbara, I shall try the tilt test when I am home. I am having a rough few days, the right side of my body seems to be much more affected have to say. Even my right toenail is going black! All the aches and twinges are all that side, and the irritable bladder welll, i feel that is having a vagal affect too and is in itself so debilitating. I have decided to pay for an MRI before I leave, need to rule out anything sinister. Never had a head scan and despite the constellation of all these symptoms I am undiagnosed, so need to rule out a brain tumour first, then hopefully they will see if there is anything else going on. I am also having a CT of the head, this is as a precaution as I had ear surgery to remove a cholesteatoma last April in left ear and reconstruction of the ear drum, they want to check there is no metal in there. Hoping I also don’t faint at the next scan!!

I need to work on my posture, make an effort to sit up to watch tv, to take my head out of flexion. I will buy a neck pillow for my flight home, and look into other options when I get home. I know diamox helps your headaches, but I cannot get this yet. I will need a diagnosis or be closer to it. Did you find that anything helped your headache? For the flight? Probably not. I do wonder why I don’t always have a headache every day if i have raised ICP, you do with brain tumour often, iI might go 4-5 days then I have another, but when I do it makes sense that it is raised ICP. Usually there on waking, continues throughout the day, bit nauseous sometimes very, limited response to NSAIDS or codeine, but can ease it temporarily sometimes, headache then often fades in the evening. The intensity of these has definitely increased. Oh what a pickle!!

Regards
Richard

[Henry40]

Just a quickie about heart rate, mine dips below 50 in the evening, however I am no athlete! We talking another feature of dysautonmia and over dominance of the parasympathetic nervous system? I find I have too much sympathetic activity early in the day and the opposite in the evening.

[Henry40]

Hi Barbara

I saw my gp whilst in Australia today, and although very nice, he implied all is fine and dandy. Has overlooked somewhat that I have been ill as soon as the plane touched down over 5 weeks ago! Like I would choose to be ill at a time like this!? Anyway all remaining bloods were normal. He gave me a print out of them and the CT results, I didn’t have to ask. I was a given a CD of the scans last week anyway which was good. I have looked at the results, had a marginally high albumin and low phosphate which is due to lack of eating and dehydration. Blood sugars were up, surprising seeing as I have not eaten a lot. I noticed just as you said, a lot if my results were just in the normal ranges, for example potassium is 3.6 (3.5-5). I very much get what you mean about the POTS patient having less circulating volume and needing to function as normal with less fluid and often less electrolytes etc.. Interesting. By the way I asked the doctor today if he thought my problems could be a form of autonomic dysfunction, he said NO, going onto say that the autonomic system governs the fight flight response (as if I didn’t know). He asked me if I have panic attacks!!

I have never had a neck or head injury, though I do identify with your occipital pain and pain behind right eye (mine is always on the right). I do feel I have excess pressure in the occipital region. If I lie upright head in pillow, head in flexion a bit, I get visual disturbances, as I sometimes can when I look down without moving my head. It feels like the nerves are struggling to carry out the action. It’s an odd feeling that makes me feel nauseous after a while. Also happens when my eyes are closed sometimes, it can be very uncomfortable as i try to sleep, eventually i do. Feels like the brain stem is under stress. Perhaps this is what causes the sensation that it is hard to breathe. I probably do need an MRI when back in the UK. This could be a challenge when I present him with all the so called normal tests I have had.

I need to try sleeping in a different position, though tricky in a foreign bed! Do you sleep with elevations at the head and foot of the bed? I have heard that elevating your head a few inches is good for CSF drainage. Sounds logical. I tend to be most symptomatic in the morning, I am light headed pretty quick, plus bladder is more irritable making the toilet dashes more of a challenge. I am only 40, feel like an old man, lol…

One thing I have noticed with dysautonomia and related conditions is that pathological changes are subtle and easily missed and dismissed. Unbelievable amount of ignorance and an unwillingness of the medical profession to think outside of their own limited knowledge base. Clearly more research is needed. I am with you about the anatomical weakness theory and the role of viruses. I am guessing previous mumps, EBV, CMV, VZV, have all contributed to this for me weakened my body etc..

Can I ask you, for your autonomic issues who did or do you see? A cardiologist? Neurologist?

Thanks
Richard

[Henry40]

Barbara
Just to add. I was lucky to fly business class over, and will do so on return, so the beds fold to close to horizontal. Good at head level, not so good at foot level…..but better than economy of course. I have to be thankful of this extra space. I am not sure if my head was in flexiion. Probably some of the time yes. Since finding this site and becoming aware of the symptoms and issues like this, I have become consciously aware of how much my head is actually in flexion. A lot!!! Of course I have spent a lot of time resting, lying on a hotel bed watching tv, head in flexion! I have had a few migraines whilst here, more more than at home, a few of these have been occipital, usually occurring with frontal pain. Nightmare. I need to watch this. Is the hydrocephalus and raised pressure a feature of dysautonomia, or related more to the various conditions accompanying it such as EDS or MS etc? I am still unsure if you can get dysautonomia idiopathically. POTS tends affect younger females doesn’t it. It’s interesting. I am already planning my raise awareness campaign lol!

Other thing was the LVDD. Is this diagnosed via an ECHO? Is the dysfunction responsible for the poor cerebral perfusion and hence syncopal episodes etc…. I am wondering who to ask to see when I get home (if I make it lol) as I m guessing my GP won’t have the foggiest. Is it the job for a cardiologist or neurologist, both?

Cheers, sorry for all the questions

Richard

[Henry40]

Hi Barbara

Thanks so much for your posts, I really appreciate such a detailed, informative and helpful reply.

Well I continue to be unwell, very unwell at times, with no explanations. Did I mention my CT was clear, I am writing this blind so cannot refer to previous posts. Not much left to come back now, just a few outstanding bloods. One is renin/aldosterone ratio which dr requested last week as every time I presented my BP was high, and he wondering if my kidneys were behind it. However, in the 5 days since seeing my GP I am taking my BP regular and it is much more normal, lower in the morning and evening, have dropped to 96/59. He gave me a calcium channel blocker to lower it which I promptly stopped. Plus had a couple of fainting episodes. Am seeing doctor again Tuesday.

I have just over a week left in Australia and as much as I want to delay coming home due to feeling so unwell, don’t think I can. I am trying to improve things but not sure what I can do. I have no diagnosis, but in my head what else actually could it be! What else gives you the sensation you cannot breathe yet everything is clear! This inability to breathe normally is scary, and even though tests clear, I keep thinking I need to get to a&e! Tight chest, hard to get air, like I wouldn’t breathe if I didn’t make myself breathe. Is this serious? It might not be a cardiac cause, but surely autonomic dysfunction could lead to something, seeing as ANS controls breathing and heart rate….. How can this problem be deemed as not serious, with such serious symptoms. A panic attack it ain’t!!

I also continue to have a terrible job eating, no appetite, the weight loss continues. I was normal weight at the end of 2012, I now look very thin. The diarrhoea has also worsened. Thanks for your recommendations re the multivitamin. The effervescent one is in water right? I think I will try that when I am home. I have on/off been taking a multivitamin pill, I should continue. I have been taking gastrolyte which replaces electrolytes. On a few days I have literally been unable to eat anything! Do you have any recommendations as to what to eat? I will try anything. I need to try and put as little stress on my bowel as possible. I had been having 2 build up drinks made with milk to get calories in, but maybe that is making it worse. I am possibly lactose intolerant and don’t know it. I plan to cut out all caffeine, not hard as I only have one morning cup anyhow, and dairy, and try bread, rice, potatoes, vegetables, fruit. Very bland but it is the least of my worries right now. Any trick I am missing with nutrition? I am hoping, maybe erroneously, that if I make my bowel less irritable, it will make my bladder less so too. I do drink plenty of water, and I don’t drink alcohol anyway (or smoke for that matter, so why me!! Lol)…

Barbara do you have POTS, or dysautonomia of some other condition? I am unsure whether there is anything else going on with me, I certainly get regular headaches so I quite possibly have an increase in raised intracranial pressure. I assume the raise is of a level to not be a concern in terms of it being a threat to life? I did have an eye test 2 months ago which was mostly ok, but nothing picked up such as increased pressure in the eye, or a swollen optic disc, tortuous vessels etc…my headaches are often around or behind one eye, I had a period of 2 weeks in October where at 2am each nigh I would awaken with pain behind this eye. It did usually respond enough to NSAIDS to get me back to sleep eventually, and if not then an imigran tablet. As I am so used to feeling rubbish anyway I didn’t see a doctor when I should have done!! I am not that familiar with Diamox but I am thinking that I would need diagnosis and to be much further down the line to get that? I am just starting a trial of Zantac/Zyrtec to see if they help at all, though not sure a week will make much difference. I do have evidence I think of venous pooling, soles of my feet often red and mottled, not oedematous though. I know I am sick that is for sure, and it is not invisible with me, I am pale and visible weight loss.

I will end it here but will look over your first post, and post again if I missed anything. It will be good to chat to you more when I am back in the uk, it sounds like you have been through it all.

Thanks

Richard

[Henry40]

Well pheochromoctoma, carcinoid or any malignancy ruled via CT scsn which is good. Having fainting episodes though so looking more like dysautonomia, maybe a type of POTS. I think i surprised the nurse, 40 year old men dont faint that often!! Its so true the degree of illness is way out of proportion to the degree of abnormal tests etc. Having zero appetite is very frustrating as I guess not getting salt in, or anything in, makes symptoms worse!! Any duggestions to get food in to prevent any further weight loss would be good. I look ill too, no disguiding it here. Frustrating…

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