GasconAlex

As link says the ear use is inaccurate as tends to overestimate the spO2. Not underestimate. The second point is raising arms might well reduce flow, but if everything is going well this cannot be the case for the head, as this is the default position, thus any veinous effects should be null. Your points are valid, but do not explain a reduced spO2 reading whilst standing on an ear reading except if there is an effect from reduced O2 due to position. If the ear gets less O2, presumably the brain does too. Lastly although the research points out inaccuracies in readings on the ear, this is of the order of a % or 2, not 15%.

After seeing a huge decrease in saturation O2 in my fingers by raising them from lying down about 30 cm above heart level (drop from 95% to 80% or lower) above this level (arm raised straight up from lying flat on bed) my pulse oximeter cannot find a pulse so I could not compare further. The exercise didn't alter my pulse really at all. I then tried to use the oximeter on my ear - where I was able to get comparable readings as to those on my finger (I used a mirror to read the result). This is where it gets more interesting. When standing I got the pulse rate bump of about 30 BPM but although still consistent on pulse readings the ear spO2 dropped to around 80%. I tried a couple of times, the values varied but were always around 80% +- 3/4%. Looking around on the use of finger pulse oximeters on ears I came across this The Ear as an Alternative Site for a Pulse Oximeter Finger Clip Sensor which concludes that it is unsuitable as the ear varies beyond acceptable bounds with the ear over reading spO2 which could be dangerous in monitoring, missing hypoperfused patients. So does this indicate cranial hypoperfusion on standing, and does it happen to other people who suffer either orthostatic intolerance or POTS? If you have a pulse oximeter and can get a consistent reading on your ear I'd like to know if this is generalised, just me or if there is research out there on this.

I use a wheelchair in the kitchen. Firstly as I use a crutch or wheelchair at all times, and it's hard to carry anything with a crutch! Secondly I can stand when able, at sit when not. You can still do most cooking sitting in an unmodified kitchen. I can also take a breather before doing heavy tasks like draining pasta. If possible I try and take a 5 minute lie down between getting things almost ready and eating, otherwise I tend to do everything for the meal then feel so awful I don't get to eat any of it.

If you can get it prescribed I use Primperan / Metoclopramide which I use when the nausea is really bad and I cannot miss another meal (Weight issues, hunger is not something that bothers me), or I will be throwing up again. It's not a longterm solution but occasionally when truly awful it is a good standby.

I still don't have a proper diagnosis after a TTT in May. The test results specify postural orthostatism, with increase in bp and 50+ BPM to 150 BPM. The report wanted a holter and 24hr blood pressure monitoring, this done the cardio did not look at the TTT, and concluded that as the heart rate rises were not instantaneous they could be excluded. They were also dismissive of the blood pressure issues has they maxed at 138. More concerned with hypotension as horizontal night time average was 86/48. There was a few other bits of rubbish in the report, like pressure drop when vertical but not reported by patient (never asked me tho') and more arrhythmia than I'd like. So now my gp doesn't want to treat the tachycardia, as this is likely to reduce the bp. The cardio doesn't care as within normal for heart stuff, and the neurologist is happy to leave it as dysautonomia with postural orthostatism (tachycardia). Doesn't help me much! So although it is good to have the TTT (and get the copy report as it is yours) it might well not answer all your problems, and the treatments at mostly symptomatic anyway, so don't stress the test. Depending where you are it might take even longer to get tested than see the neurologist, I hope not - but the delays are often there.

Wrist bp monitors can be easily affected by position changes. Upper arm ones are more reliable. I was told that if you took 3 readings straight after each other and they were about the same then probably right, if they are all over the place then there is an error! I thought my odd BP's were the machine, but no it's me.

Check the effective times of your medication. I was sleeping really badly and waking up and staying awake. I'm on baclofen for muscle tension, this hangs around in your body for about 4 hours, then drops off. The doctor suggested taking a dose when I woke up in the middle of the night, I now do this and fall back to sleep about 20 minutes after the dose. It is not perfect, but for the most part this helps. Speak to your gp, changing dosage / dosage times might help, always worth looking at.

You can recline wheelchairs a long way, and can have leg supports which should work. My chair reclines more than the front seat in my car, and really can help the length of time I can be up. It is difficult pushing my chair when really reclining but there are plenty of options that have almost fully reclined positions - these are generally for those who cannot use the wheelchair themselves and must be pushed. It might be worth seeing if you can look at the options (local rehab centres, medical care homes, handicapped schools) who may well be willing to point you the right way. Most supply shops appear to be sales focused and only can help you once you know what you want. In my experience the selection offered is based on what purchase price you can afford, not what is best value.

Still up in the air on an official DX on pots (ttt was 50bpm rise to 150) but did have cranial CSF leak (confirmed in surgery) amongst a few other issues. I still suspect a CSF leak as the only thing that has helped the constant headache is a blood patch. However the neurologist that looked at it was of the opinion that if it's not on the MRI it isn't there. I'm still looking to see if this can be investigated further, but this takes time. From what I've read it is more than possible that those with spontaneous CSF leaks have an underlying issue that includes a strong likelihood of pots. I'm fairly sure this is probably my major current problem, and the pots symptoms would have remained unnoticed if I hadn't had fairly serious other medical issues.

Huge issue for me this one! I'm not in too great shape and my parents live a long way away from me and my siblings. They both really need some care or at least home help but refuse all offers of help or moving closer to one of the kids (I'm lucky in that I've got spare bedrooms, and a small annex available). They want to try to help me, which frankly is not going to be good for them, and will be stressful for me. I'm fairly certain that my mother has issues with dysautonomic dysfunction (but refuses testing) whilst dad has issues with hip replacements / epilepsy / Parkinson's / COPD / hypothyroidism / osteoporosis ++ (he's late 80's). Although both still mentally OK (yes sometimes it's difficult with my dad, especially if they have restarted the morphine) but both of them refuse to make plans about how to live! (They have both sorted out the financial stuff and wills for when they die.) They live in a house that is not disabled accessible (or convertible) and say they have considered moving but cannot find anywhere in the locality. The fact that they are hundreds and hundreds of miles from family is rejected, even when they now have problems with the not infrequent hospital visits. Assisted housing is a complete non starter, and it's really difficult trying to sort this out at long distance.

Although I still don't have official pots DX, managed a 50bpm increase to 150bpm on the TTT so that comes into pots (do have a dysautonomia DX from other tests) they are trying to DX the cause rather than the symptoms. I started baclofen low dose last year for leg contracture and general muscle hypertonia. Since then the dose has been increased to 70mg per day to try and control the problems. No one has ever questioned the use with pots, including the dysautonomic neurologist who did the TTT. They are more concerned with the muscle problems. You do need to taper on / off to prevent side effects. For me it helped straight away (noticeable improvement in a couple of days) but since then there has been a slow and relentless increase in dose to help the problems. For localised problems have you / they considered botox? They were going to use botox for me, until they started working out where they would need to inject and quickly went over max dosage.

Just seen the bit about muscle weakness. If it is neurological the only help is to talk to physios or occupational therapists who can come up with gadgets, helps and work arounds. Hopefully the loss is temporary, or failing that is not true muscle weakness but a control problem. If it is control (like after a stroke) you can relearn a lot of movement, it takes time (lots) and a good physio - try and find a neuro physio if you can. Some muscle weakness you just have to live with, you can try your hardest and the muscle doesn't move or just twitches feebly, for those you need a work around if at all possible. You are likely to need either rehab or long term physio, try and look into your options now (including I guess costs and insurance) so you have the benefit now and it can kick in as soon as possible afterwards. You might well feel disconnected, muddle headed, confused and disoriented straight afterwards. Having several plans in place will help. Whatever else you do don't try and strain the muscles to try and do what they used to do, as infuriating as it is overstretching causes further damage. Recovery takes time.

It is scary when you need brain surgery. I remember the surgeon coming to find me in after a surgery and saying sorry didn't go as planned and now you need a craniotomy. It took a long time to sink in. But it isn't all that bad, and if the tumor is causing your other problems perhaps once you have recovered from the op life will become lots better. Although with brain problems placement is often a key factor the fact that the tumor is relatively small is good news, as is the fact that this wasn't pulled out and highlighted on the MRI. On my CT scan (which I read before going to the specialist) it was pulled out in bold at the top of the report, along with comforting stuff like needs immediate MRI to investigate full soft tissue involvement and other stuff which made it impossible to miss even on a cursory examination. The specialist (who was not expecting this) looked at the report and swore quite colourfully when he read it. Don't worry too much about the bloods as with a tumor there this can screw up lots of stuff, your doctor will tell you if there is something to worry about. If you do need a craniotomy you will need help for weeks afterwards, and need to plan to have some sort of support in place afterwards. There are some good sites on what to expect after brain surgery I liked this one , it has lots of comments from other people who have been through it too. You will get over this, and although there have been delays and difficulties to get this far it becomes easier once you have a diagnosis - the doctors do loads better when they know what they are trying to do, rather than trying to guess what is causing weird symptoms. Good luck, being young and active gives you a good start in beating this.

You need to make sure you are measured properly for compression garments or they will not work. This is leg length, thighs, calfs and more to make sure they correctly compress your leg. I was told that you need at least thigh high in order to be effective. The higher compression levels are harder to put on so I'd not start on the highest level compression except if you really have too. (Doctors advice) There are cheap compression socks that aren't medically validated which I would avoid. I would start with just a couple of pairs as you might have problems with them, especially summer heat.

OK, the US health and disability systems are complex, arbitary and plain scary and I know little about them so I'll leave that to others. But, if you need disability don't be put off by feeling you don't deserve it or you aren't disabled enough. I left it far too long because I didn't want to be 'handicapped', but the thing is what they décide isn't what makes you handicapped - it is what you can no longer do. If you can still do stuff, good. Do it, try and do as much as possible, but don't pretend that because you can still do some stuff you haven't lost the ability to do lots of normal stuff too. I no longer care about the label, it was pretty obvious to everyone that it included me even without my accepting it,

@Weary It could be. I'm trying to organise a consultation with the ENT who first operated, the last ENT specialist I didn't get on with as he is one of the two best (in skull base) in the country - he knew it and felt everyone else should know it too. It's a bit complicated but I am trying to arrange it. The tumor did screw up most of the left side cranial nerves. I am pretty sure that I probably had issues with dysautonomic dysfunction before but held it all together so was not diagnosed. Now I think that it is getting worse and because of the other issues I cannot deal with the dysfunction.

@PistolThanks, the neurologist who did the ttt was purely an autonomic neurologist (specialized in MSA), she's really very good but.. she wants to be able to pass me to a more general neurologist to deal with on a day to day basis, the neurologist who ordered the test was only a Parkinson's specialist (I know, she knows, I don't have Parkinson's) so she's out. The other neurologists there I have seen are a headache specific neurologist, a sleep specialist, the ent neuro and an epilepsy neuro. These are all excellent neurologists but as yet they haven't fitted me in the right box! The local hospital neurologists aren't top draw and I had a disagreement with the current head, which makes life difficult there. (It's not just me my PCP also has been a little short with him on the phone whilst I've been there) I'm also having increasing problems with vibration and the drive to my regional hospital is really tough. Last year I went for an MRI and after the trip and 45 minutes being in the MRI ended up being admitted as an emergency. No one in their right mind would insure me to go to the US - I looked up the costs of the operations I had in 2016 and got a ball park figure of 500,000$ . Once I can speak to my PCP I was hoping that she can go directly back to the autonomic neurologist, but the system doesn't work exactly like that but perhaps she can bypass a few steps - sometimes it's possible. I'd just like ideas on if there is any other stuff that might be good to do.

So after a TTT which had a +50 BPM and a bp which started at 134/77 and maxed at 180/105 in testing (No drugs given in the testing - just the standard ttt, Valsalva's etc.) sent off to cardio for 24hr holter and 24hr bp testing. These are mostly better with slightly elevated pulse in the day maxing at 133 BPM dropping to 68bpm at night with 51bpm min. They noticed no abrupt changes on standing (no surprise there it generally speeds up over a minute or so) and a few arrhythmias which don't worry me too much. They give much more detail than last years one which I had whilst hospitalized (so horizontal virtually all the time) and on beta blockers. For the pressure testing again no great surprises either with a fairly minimal report with a max systolic of 138 and a daytime average of 106/72 falling off to a night average of 86/53. They did notice a daytime drop to under 90 systolic, but said was not noted by me. Neither really surprise me as pressures have doubled in 5 minutes before (or halved in 10 minutes) as the neurologist who did the ttt said the measurements fluctuated over a great range. But what now? My PCP considers there is a neurological issue, which is causing these issues (with really strong headaches and muscle problems) but so far I haven't got a neurologist that's really following me. They say that it's not their specific area and pass me on. So at the last count I've seen 10 neurologists over the last 2 years which includes almost 6 months in hospitals, but no official diagnosis. (Other than the ear tumor and meningitis and leaking CSF fluid and my brain dropping into my ear cavity - all of which is considered fixed) Because the cardio hasn't added to or subtracted from the ttt I still am no further forward. The cardio has passed the report on but not to the neurologist. Before I drag myself off to my long suffering PCP /gp any ideas of who I should be talking to? Any thoughts are appreciated!

Pain is always personal, there is no other benchmark. I'm not trying to suggest otherwise, and if you live at really high pain levels your life must be incredibly difficult. For the pain scales here they always say zero is no pain at all and 10 the worst pain imaginable. The problem is the memory of pain luckily fades for most people into 'it really hurt I couldn't do xyz because of the pain', it's just the minds way of coping. On the pain studies I've looked at most people rate current (very painful stuff) pain higher than historical pain. So dental pain is often quoted as greater than childbirth. I can't comment on the latter but I'd expect it to be worse. But when you keep going back to hospital they look at what you said and when (it's often written into the hospital record here, at least) so I believe you need to be consistent so you can work out what works. It also helps me be able to be sure in myself that things are getting better - as in now I can string 3 or 4 words together I could not an hour ago, so therefore even though it is still really really painful it must be less (or the drugs are working). Maybe it's just my science background, but I'd kind of assumed that most people who regularly encounter pain and have to qualify it to medics would have some sort of scale in order to be consistent, maybe it's just me...

1 to 10 Pain scales are used frequently and I try to be as consistent as possible, as I know that specific memories of pain are very poor (relatively) and it does not help when the answer is always 'lots'. So I have my own meanings/ level definitions that I have used for the last 30 odd years so at least when I am really hurting I can give meaningful responses. I would like to know if others have their own definitions to help them quantify their pain, and what others do or if you just guess each time? I use the following for the top end of the scale: 5. Teeth clenched the whole time 6. Still possible to speak in whole (short) sentences 7. Not possible to complete sentences in a single try. 8. Single word answers only 9. No meaningful words 10. Becoming unconscious due to pain (not fainting or losing consciousness due to lack of blood / blood loss / pressure problems / stroke etc.) I haven't ever told the doctors treating me what my scale is, also fairly obviously I cannot ever give an answer of 9 or 10 when I'm at those levels. But at least it means that when it really hurts I really know that I have survived worse or as bad so can survive this time too.

Just to mention baclofen, there's loads of stuff on how bad it is but I never noticed most of these but you do have to taper on then if you have problems taper off, it causes serious problems if you start / stop abruptly. I don't know how this works for alcoholism (doses then are way, way high) but the doc's warned me about all that before writing the script.

No jaw clenching but really impressive muscle tone all over, this is causing contracture in knee, elbow, shoulders, feet and fingers. In the daytime when I can concentrate on keeping from falling into the 'postures' it's not too bad at night when I sleep this goes into overdrive. I take 20mg baclofen bed time, 20mg at about 2 am (I always wake up from the cramps so no need for an alarm) and then 10mg as soon as I wake up (or 4 hours whichever is later) and another 2 x 10mg in the day. It's not great but drops the muscle tone down into "can move muscle" territory. The doses seem to be climbing to keep the same affect. Waiting on the 24hour heart and bp results but the tense muscles seem to increase both significantly, once I take the baclofen they subside into more normal levels.

Here they use the 30bpm, but without the actual test no one can diagnose you. The NHS can be really difficult, especially in neurology where whole departments seem to operate like groups of unconnected individuals. Your gp might be able to push, but often they are left in the dark too. You could try contacting the specialist directly for an update, sometimes that does work.

Can't say I've had migraines but headaches are permanent. I get headaches from being vertical so am on tramadol slow release constantly, if I have too much vibration the headaches increase to a level where I have to lie down and keep my head very, very still for 24 to 36 hours. This helps along with the extra tramadol, acupan (nefopan) and paracetamol. Normally at these times I throw up, which means I take primperan (metoclopramide) for the nausea. The only thing so far that has had an effect on my headaches was a blood patch which worked perfectly for 36 hours. I'm stuck in an area where I am not sure if the headaches are the cause of the dysautonomia or the inverse.

If you can get it hydrotherapy is great exercise. Up until January I had hydrotherapy with physiotherapy and found that in the water my pulse was steady even when exercising vertically. Unfortunately due to rent issues my physio had to leave the health centre, so now I don't have the hydrotherapy. (The pool is still there unused at my gp's and my gp thinks it would be good to continue but the next closest pool is 40km away and the transport costs would be large, it's very annoying)