Mm, could it be dysautonomia

[Henry40]

Really happy to have found this site. I am 40 year old male living in the UK. I was a bit sceptical about coming on as it seems almost all sufferers of autonomic dysfunction are women. I feel like I have been unwell my whole life with a myriad of different symptoms at different times. I have always had headaches, mild to moderate migraines without aura although more recently with flashing lights, bowel disturbances, abdominal pain, pelvic and groin pain, urinary frequency, dizziness within the last 18 months (especially in busy environments), mild anxiety, depression., fatigue. This list is not exhaustive. However in isolation these symptoms may not appear that serious. In the past I have consulted physicians for many of those complains, had gastroscope, colonoscopy, ultrasound etc, all normal, and blood tests at various intervals, all normal. Only once about 15 years ago did I have a high white cell count and a diagnosis of mono. I have never been diagnosed with anything specific.
Five weeks ago, I took the long journey from UK to Australia as I have done successfully before. The flight was fine, no different to any previous ones. However then began the symptoms that have culminated in the most challenging last few weeks of my life, exacerbated by the fact that I am meant to be on holiday. The evening I arrived I had chest tightness and the feeling I couldn’t get air in, both new symptoms. I wasn’t short of breath, infact it was the opposite, my breathing felt slow. Worried having just got off a plane, we called an ambulance, my heart rate was fast, I was sweating and a bit dizzy, and was ghostly white. They treated me as if a heart attack, I was tachycardic,, BP raised 170/100, however I lost consciousness for 2 minutes following a small morphine dose and a nitrate. I wonder why now!! In the hospital I had blood tests but all normal, ECG and CXR normal, and discharged. I went home but still not feeling well I went back to the ER 48 hours later with returning chest pressure, similar symptoms. Again tests done were normal, and I was told in no uncertain terms to not come back! You are fit and healthy they said. I new I wasn’t but thought to myself I need to rest and go slow and maybe put it down to particularly bad jet lag.
As the days unfolded the chest pressure did subside a bit although I was still feeling I was having to make myself breath, as if a heaviness in my chest was preventing my body from breathing spontaneously. Very strange feeling. I started to get other symptoms over the next week, a heavy left leg, tingling in right hand, shooting sensations just about anywhere like electric shocks. This included around my right eye. Had some abnormal sensations, like cold sweeping across, but in random areas. The urinary frequency increased around this time, needing to go sometimes as little as every 10 minutes. Bowels were not too bad as they are never normal, however was having bulky pale stools followed by normal, then long thin etc.. All of this took me to the GP, at that point MS was beginning to cross my mind, but neurological exam was normal. He still wanted to rule cardiac so had more tests, negative again. He put me on nexium but they haven’t helped. Then my appetite went, every time I ate it felt like I just wanted to throw it back up. I didn’t eat, only drank for 4 days, the weight loss started to happen quickly from this point. GP referred me to gastro who offered me an endoscopy. At this point I was unsure whether I would have to pay the 2000 dollars for it, I was paying for all the other consultations, so it was agreed to wait and see if any improvement. I was able to start eating a bit, and as the gastro consultant was then on holiday I didn’t have endoscopy. Since this time over two weeks ago I still have not consumed a meal, and I have lost about 10 pounds.
In the last two weeks I have felt just so poorly really, a whole mix of the symptoms above. Getting gnawing pain in abdo, and then one times it feels like I have been kicked. What has got worse in the last week and us the most debilitating if all is the dizziness. I know go dizzy almost every time I stand, and I am now confined to indoors. I go nauseous when this happens. Heart rate is elevated. Infect during this holiday I noticed that my heart rate skips from 60-70 when siting or lying to 120-130 on standing. Not sure how long this been happening and unsure why my BP is doing. I also have icy hands and feet most if the time, often clammy especially in right hand. I am due to fly home to the UK in a week time, I dread it! Infact how on earth am I going to do it, being so dizzy and feeling this rubbish. I see the GP in two days, but since seeing him last I have recognised that behind all this might be dysautonomia of some sort. When I listened to Dr Diana’s first symptom video I got goosebumps thinking omg that’s me!! But how can I get all this out without sounding like a nightmare. He might not have have even heard of POTS!!
Sorry if I have droned on and I know the nature of dysautonomia means diagnosis can be tricky. Perhaps my symptoms are part of a few syndromes. I just don’t know. I am fed up though :(((( thanks for listening

[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…

[Barbara]

Hi Henry,
I know of a few men with this disorder, so you are not alone in it. You’re symptoms ring so familiar. Yes, so many people just don’t ‘get it’. The basic P.O.T.S. orthostatic intolerance is bad enough on it’s own, when we can’t get about our daily affairs without having to seek out somewhere to sit all the time. When that’s further compounded by a myriad of seemingly disconnected symptoms each disrupting different systems, it’s starts to drag you down. As you say, when each symptom is considered in isolation it doesn’t seem too bad really, however when they are all suffered in unison, the body becomes in distress, as it battles daily (and fails) to maintain equilibrium.

I’m not surprised you’ve had all of those tests (as I have my friend) indeed many of us have undergone them. They may come back negative but all that has done, in my book, is rule out the obvious – and that’s where they seem to stop, which is a big FAIL. That should be the start of their testing, not the end. I believe (as an ex systems analyst/tester) that they are giving us the WRONG tests. The majority of the medical fraternity don’t seem to know what they are looking for basically, in this complex condition, so very few know what tests will trap it.

I too have flown many times without trouble, then twice suffered with excruciating head/temple pain, then a long haul flight from New York (to UK) was spent with my head in a sick-bag! – all related to pressure I’d say, the later probably affecting my brainstem. Can you remember what position your head was in on the plane. Was it in flexion for a prolonged time, as this aggravates things ?

I’m wondering if it was an increase in brainstem pressure that subdued your ‘breathing’. The brainstem helps control your autonomic nervous system, which includes controlling your breathing. If your breathing was low, your blood would probably have been low in oxygen, your heart would have to beat much faster to supply the required amount (hence the tachycardia). If insufficient oxygen was getting to the brain, that would shoot up your BP too. Nausea can result from brainstem compression too.

As many of us have a ‘heart filling’ problem too (LVDD – cardiologist needs to be looking for Left Ventricular Diastolic Dysfunction) and low blood volume, this wouldn’t have helped. Your body certainly sounded like it was in an awful lot of distress at the time. I have had one or two ‘do’s’ like that, going to hospital in an ambulance but tests came back clear and they’d look at me barmy. I think it’s some sort of P.O.T.S. autonomic crisis.

I don’t wish to alarm you, as it doesn’t seem that that was the case but a chest x-ray doesn’t always pick up a pulmonary embolism – I know because it totally missed mine!

The problem with urinary frequency is that it can be a sign of pituitary problems, which again many of us have (undiagnosed!) due to the raised intracranial pressure. When your pituitary is not producing enough antidiuretic hormone, you will pass more urine than you’re supposed to. This depletes your blood volume (as well as fluid from tissue) and causes dehydration (and possibly ‘thick’ blood). When I had obvious dehydration the worst, my POTS and chest tightness episodes was the at it’s worst too. I think it’s a contributing factor to POTS. Look for signs of dehydration when it happens again – pinch your skin and if it’s slow to return it’s possibly a sign. I’d just press my finger in my cheek and it would stay indented! Remember you need salt also, to retain fluids when you are re-hydrating.

I also noticed that my ‘diastolic’ (lower number) blood pressure was always above 90 when I had a chest tightening. Be governed by the way you feel my friend, don’t try to stand up if it causes chest tightness or pain, this just adds to the burden, you’re heart is obviously struggling under it’s current conditions (your internal state) it needs your help to do so. Carry out tasks in a seated position as much as possible for now, until you can get to the bottom of it.

Your raised heart-rate from sitting to standing is typical of POTS autonomic dysfunction. From your additional symptoms, dizzyness it does sound like possible raised intracranial pressure. I’d be asking my GP for a head and neck MRI. I’d be asking the radiographer to look for an ‘Empty Sella’ or ‘Partially Empty Sella’ (Squashed pituitary); any degree of ‘cerebellar ectopia’ this is where you hindbrain descends into (or beyond) the opening of your skull (foramen magnum) and can press on your brainstem; any amount of excess CerebroSpinal Fluid (CSF) in and around the brain area; any stenosis of the Transverse Sinus; any enlargement of the Internal Jugular Vein (which can put pressure on the Vagus Nerve).
Regards
Barbara
(UK)

[Barbara]

Hi,
I forgot to mention the obvious, if you do have raised intracranial pressure, the drug Diamox (acetazolamide) reduces this.

Secondly, I’ve found that a comprehensive multivitamin helps me feel quite a bit better fairly quickly, when my heart’s particularly playing up. I use Boot’s own brand “Multivitamin Effervescent”. I’ve seen the same quick improvement in my elderly aunt, when I gave her one of my grandchildren’s gummy multivitamins, when she was obviously suffering from heart type problems, I don’t know the specifics of how it works, or what element is most useful, I just know it helps.

Worth a try ?
Regards
Barbara
(UK)

[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]

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

[Barbara]

Hi Richard,
Yes, I’d get back on the multivitamins ASAP and the Boot’s effervescent ones are taken in a glass of water. I know what you mean about this forum, it’s unfortunate that you cannot see the post you are referring to. I work-around this by cutting and pasting the post I’m responding to into wordpad, then I can refer to it, as I’m writing. I also copy (or write) my post into a wordpad document, as a safeguard, as sometimes this forum looses it as you press the [Submit] button!!

A CT scan is ok for looking at bones but not much cop at examining the soft tissue, in my experience, you need an MRI for this. Just because they say your scans are clear means nothing. I’ve had about 8 MRI’s, all which showed much the same, 1 reported the partially empty sella, 1 reported the Cerebellar Ectopia, NOT ONE radiologist picked up my Cranio Cervical Instability! – there were several other things that they missed too – I rest my case!

Yes, I’ve come across that renin/aldosterone ratio recently, though I can’t think what for. I take it they did a Coagulation/Thrombotic Risk Panel set of blood tests? Whilst we are talking medical records, I would advise you to get copies of everything (radiology on a disk with viewing software) before you come back to UK, if possible, you’re probably going to need it.

I have put my ‘condition signature’ below for comparison. I have to ask, have you injured your head or neck? forgive me if I’ve asked before. With regard to the raised intracranial pressure thing, I did deem a way of working it out at one time but I can’t remember how I did it just now but it was non-invasive, based on blood pressure, if I remember rightly. I’ve heard of bad reports about lumbar punctures, so if it was me I’d avoid that at all costs, I don’t think it’s recommended for people with EDS. My symptoms were occipital pain, soreness at the vertex (top of head) on a morning and pain, like a pressure behind my right eye, a rigid cervical collar (Philadelphia) got rid of the occipital and vertex pain by stopping my head from sliding forwards and going into flexion. The Diamox has much lessened the eye pain.

With regard to your eye test, did you get hold of your fundus photos ? My optician missed the tortuous vessels and the abnormal artery:venous ratio, it was only when I reviewed it with her that she took the time to look in more detail and spotted them. She totally missed the disk problem and I didn’t know how to identify it at the time but I went to see a neuro-opthalmologist and he spotted it – then I got the Diamox, no probs.

With regard to your sleeping position, I should avoid sleeping flat, both with POTS, as with other heart problems, you are better elevating the head of the bed. I have to sleep sitting up to avoid problems.

I think we as a community, have underlying anatomical weaknesses, that leave us very vulnerable to injury, be it from trauma, surgery, or virus. There seems to be a common “core set” of conditions with a likelihood of one or more “add-ons”.

My personal opinion is that there seems to be a common association between LVDD (Left Ventricular Diastolic Dysfunction) and POTS (Postural Orthostatic Tachycardia Syndrome). Here’s a good, nay excellent (but long!) video by Dr Paul Cheney on LVDD:-

http://www.cfids-cab.org/MESA/CFS_Dist.htm

(For those of you new to the site, you have to cut and paste this link into your browser, to watch it.)

I have a transcript of the video, should you wish to have it, send me a private message.
Regards
Barbara
(UK)
—————————————————————————————————————-
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!

[Barbara]

Hi Richard
Sorry I didn’t mention the nutrition side but I don’t have a great deal of expertise in this area my friend. All I know is nutrition is important and cannot be neglected, if you are to remain strong. I would attempt to eat ‘little and often’, as is advised if you do have POTS.

I DO know however that dehydration, diarrhea (and excessive urination) can lead to Potassium depletion, which can affect you ‘big time’. An easy way to replenish this (if you can tolerate it) is Banana. My twitches and jerks improved when I ate a banana a day, over time so did my heart problems.

Now I know what you are going to say, why didn’t that show up on the blood tests ? In fact I wondered why many of our blood tests came back ‘within normal limits’ (albeit close to one extreme or another!) So I’m going to share with you my little theory……

Many people with POTS suffer from a reduced volume of blood (hypovolemia, I think it’s called). Let’s take two individuals with the same blood test result of 3 units:-

Person A). Mr Normal, the average adult with 5 litres of blood, where a quantity of a substance within that blood has been measured as 3 units per deci-litre, to find out the total amount of that substance circulating in that person, you multiply the 3 units by 50 (being 5 litres x 10 deci-litres) which gives 150 units circulating in that person, yes ?

Person B). Mr POTS, the same sized adult with only 4 litres of circulating blood, in his case, you multiply the 3 by only 40 (being 4 litres x 10 deci-litres) which gives only 120 units circulating in that person. Do you get the picture ?

So the available substance, even though both of their readings were the same per deci-litre, is reduced by 20% in the POTS person ……….. are you with me so far ? Mr POTS’s body, still has to carry out the same number and type of processes as Mr Normal’s body does – but with 20% less resources. Now do you understand the problem ?
Regards
Barbara
(UK)

[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]

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.

[Barbara]

Yes occipital pain and eye pain both related to raised intracranial pressure, I’d say, but you need to know why – I’d hazard a guess at some degree of cerebellar ectopia on your MRI, coupled with possible instability due to EDS. Something in your past has increased the volume of the contents of your skull – does Mono do this ? I don’t know.

The weird feeling from looking down – I SOoo get this, I have it if I look to extremes in any direction, it makes me feel really unwell if I hold the gaze for any length of time, does it affect you this way ? I sometimes feel like it’s going to cause a fit or something.

I have had to sleep sitting bolt upright for the last 10+ years, as my symptoms were even worse laying down. I still got real bad symptoms but at least I was alive. For the last 5 years I’ve worn a rigid (Philadelphia) cervical collar which has helped no end. When you describe sitting upright in bed, it’s no good if the pillow forces your head into flexion, you need to avoid this at all costs, you have to support your neck and stop anything from pushing your head forwards.

Check what position your head is in on an evening, when your heart-rate is low (Bradycardic). Many of us are real bad in a morning and improve as the day goes on, we seem to suffer something overnight and bear the consequences the next day.

Once back in England, do a ‘Poor Mans Tilt Test’. It’s 8 years ago since I learned about this, so things might have changed a little, but if I remember correctly, it goes something like this:
Quick ‘Poor Man’s Tilt Test’.
You’ll need:
Somewhere to lay down and a wall very closeby to lean against
BP pressure cuff
Pen & Paper
Someone to push the start button, write the results & symptoms and to help you
Procedure:
Breath normal and relax, do not talk (except to summon help, if you need it)
1) Lie still and rest for 15 minutes minutes, then take your blood pressure and pulse.
2) Sit up for 15 minutes, then take your blood pressure and pulse.
3) Stand up (against the wall), then take your blood pressure and pulse.
4) Stand quiet and still for 3 minutes, take your blood pressure and pulse.
5) Stand quiet and still for another 3 minutes take your blood pressure and pulse.
6) Stand quiet and still for another 3 minutes take your blood pressure and pulse.

At point 3, if your pulse rises by at least 30 bpm (beats per minute), you can bet you have POTS (Postural Orthostatic Tachycardia Syndrome). For some it might take until point 6.

I believe a 20 point drop in Systolic BP (and a 10 point drop in Diastolic BP) shows Orthostatic HYPOtension too. Many POTS people do not suffer this. Some suffer Orthostatic HYPERtension (me included) where the longer we stand, the higher our BP goes.

If the above test indicates you may have POTS by increasing your heartbeat by 30, tell your GP when you see him. Suggest a referral to Prof Christopher Mathias, Autonomic Referral Unit, UCLH, London.
Regards
Barbara
(UK)

[Barbara]

I forgot to mention, with the Poor Mans Tilt Test, get your assistant to note down any symptoms that you feel and at what point, e.g. say sweating, pulse in head, dizzy, etc..

If at any point you get chest pain or tightness, or serious dizziness – abort the test.

Regarding the bed position, many people chock the head of the bed, I’ve also heard sleeping ‘head up’ at 45 degrees mentioned. Rather like someone with a heart condition when you think about it!
Regards
Barbara
(UK)

[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]

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

[Barbara]

How did they diagnose the cholesteatoma without a scan – could they see it via the ear canal ? It’s odd that that was the left side of your head, as it’s possibly the left side of your brain accentuating right sided symptoms. I think you are very wise to ask for an MRI.

Your question about intermittency of headaches. I pondered over the intermittency of several of my symptoms (the chest tightness, the sweating, etc) for quite some time and decided that there had to be some dynamic(s) involved. I concluded it was activity related, as many activities whilst upright triggered the symptoms, yet if I was seated whilst I carried out the activity, I wasn’t as bad. Was it that:-

1). Seated my leg muscles needed less blood, so more blood available for rest of my body, or
2). Stood up, my head was more in flexion, seated my head was less in flexion.

I then realised that some jobs, even sat down, caused arrhythmias, high BP, and associated symptoms and these were jobs that included a lot of head movement, arm movement, or bending down. Again I had the same dilema, was it circulation related (increased demand on the heart), or head position related – or both!

In 2004, I carried out a 7 day study of Blood Pressure, Heartrate and various other things, whilst carrying out my daily activities, to try and get to the bottom of it. It merely served to confirm the above findings and not to favour one over the other, both were involved.

I did determine though, that my Pulse Pressure (i.e. Systolic minus Diastolic) was always low when I was having purple legs and leg pain, usually in the late 20’s. I am stunned that your pulse pressure is even less than this (without you going unconscious). Your circulation is certainly compromised, no wonder you feel so ill. Is there an intermediate body over there, like our NHS direct, that you can talk to about the readings ? Your doctor probably thinks you haven’t taken it right (or that your BP monitor is not working properly), or maybe he doesn’t understand the significance of pulse pressure! It’s certainly a strange result.

I have, more recently, revisited the data I collected in my 7 day study and, using a formula to roughly calculate intracranial pressure, it shows that my ICP was not at a constant level but it was often above normal and sometime well above normal. I think that’s what causes the “intermittency” of many symptoms.

Anyway, one aspect I could “manage”, to a degree, was head position which brought improvements, by consciously avoiding jobs that included bending down, leaning forwards, or holding my head in flexion. I’d already stopped doing any action that included turning repetitively from side to side (i.e. ironing) as this brought obvious problems and could trigger throat tightening (a swelling/restriction – bit scary).

In fact, if you do suspect raised intracranial pressure and can get to see a Neuro-Opthalmologist, ask them to look closely for subtle signs of raised intracranial pressure, it will be a bonus. It was a Neuro opthalmologist who spotted the signs of my raised intracranial pressure and started me on Diamox.

The best treatment for my severe occipital headache and morning vertex discomfort (and also the neck-ache and shoulder-ache) has been when I was issued with a Philadelphia Collar and Body Brace. This helped keep my head well positioned and my neck and back aligned – bringing immediate overnight relief (pain level from 9/10 to 3/10) – I couldn’t believe it, I’d suffered terribly for 5 years, following the accident!!

I don’t take Diamox for my headaches, as they are so low grade I rarely notice them now I wear my collar 24/7. I take Diamox to reduce my intracranial pressure, which is causing the eye pain and exerting pressure on various brain structures, including my pituitary gland, causing varying degrees of bodily malfunction (hormone related); and probably pushing my hindbrain south (cerebellar ectopia) pushing it into my brainstem causing autonomic nervous system malfunction and fluctuations; all resulting in various bodily changes, a wide array of pains and discomforts, overall generating a multitude of symptoms.

I don’t know if a neck pillow will give you sufficient support but it’s better than nothing. Hope some of this helps (someone).
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!

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