GasconAlex

How did they measure your cerebral blood flow? Did they use the Diffuse correlation spectroscopy or the CT / PET / fmri? Do the values vary significantly between recumbent / sitting / standing? Although I've had the standard Doppler / echo studies of the carotid arteries and the full stroke CT and MRI scans looking for blood flow problems / stroke / TIA I've never had cerebral blood flow quantified and am very interested in anything that is possible in this area.

Not anaemic in any way but was a biochemist. One of the best ways to get iron into your body is cooking eggs in a cast iron (non coated) pan. The eggs contains iron binding proteins that increase the iron content of the eggs by about 400%, it also binds it in a way that means that you can absorb it into your body. (By the way if you cook them in aluminum pans the aluminium gets bound to the same protein and gets absorbed, because there is less aluminum naturally present in eggs the aluminium content goes up about 3000%. Aluminum has been implicated in Alzheimer's presenile dementia so personally I never cook in aluminum) Absorption is important as often some supplement producers just include iron, and this passes straight through. With fortified cornflakes you used to be able to grind up the cereal and extract the iron with a magnet. This is about as much use as you would expect, but they can write a large iron content on the box.

Scooters can be difficult and personal, I've been looking at them to get about the garden but everyone is different. It depends exactly what you want to use it for, some are better in towns, some in the country. A lot of travel companies don't count scooters as wheelchairs so if you fly / use trains you need to look into that. Even when you find a good one the seat can be uncomfortable for you. I was speaking to someone at the weekend on her third scooter. The first couldn't do what she needed it to do, the second became too uncomfortable after an hour or two but she's happy with this one. They are also difficult to get into cars, so you'd need a ramp. Last year I encountered someone on a ' quickie' which folded up to standard hold baggage size and only weighed a shade over 20 kg. He said it was great, but he had a proper one at home. For @StayAtHomeMom I would not recommend double crutches they are cumbersome and tiresome. If you need more support go for a walker. They aren't that bad, if you get tired you can sit and you can carry stuff. With crutches you cannot. I know it makes you feel really old but if it helps you does that matter? (I admit I refused one, but since I can only get about 30m slowly with a crutch I have to use the wheelchair for any trip away from home - except physio where I can be dropped by the door and people don't care if it takes me a minute or so to cover the 15m with the crutch) The 3 or 4 wheeled walker versions can move at a fair walking pace for a long distance, in 2016 when I spent months in hospital / rehab they had the full range of equipment and believed that it was better to walk with a walker than struggle with crutches and end up not moving. They preferred the progression from walker to single cane, if at all possible.

Yes it's vertigo. Normally caused by a disconnect between your inner ears that forces your eyes to move with the motion your ear is senses. Except you are still and your ear has made an error. Normally this is due to inner ear infections. It can be important so if it continues mention it to your doctor. There are some pills that apparently help - they didn't help me but worth a try. There are a few basic tests that help detect this. Some are ok, like the video nystagmus test, then there's other tests such as the head shaking test and the spinning chair test. These are not fun when the room is spinning anyway, but a special mention has to go to the calorific ear tests where they pour a litre or so of cold then body temperature water into your each ear whilst recording your eye movements. Hope it gets better!

On the definitions I've been told POTS cannot have a significant fall in BP. If you have a significant fall in BP then it counts as orthostatic hypotension (with or without an increase in HR) and POTS is an orthostatic related increase in HR of 30bpm or over 120bpm without a significant decrease in BP. Both are dysautonomia, and both have underlying causes. It doesn't matter what they call it - what matters is how they treat it / you cope with it (or not). If your doctor is still offering treatment then you might as well try it. If your doctor has called it a day I'd find another doctor! I agree on the drugs skewing the results, but many people cannot cut out the drugs before the test so hopefully they take this into account.

@Delta I agree that blood pressure swings really do your head in, I suspect that BP issues might be causing some of the fatigue and headache problems I have. I do my best to stay vertical as long as possible, sometimes several hours, but ... my feet tend to go purple and at some point I have to lie down and be horizontal. For my TTT I ended up with a +50 BPM and a BP that went from about 130/75 to 180/105. At home I have managed to double my BP (and by double I mean *2 on both the systolic and diastolic) within half an hour by the super human activity of having a shower. The TTT is meant to be more accurate as it removes (as much as possible) the increase in HR because of muscle activity. If you find standing unsupported difficult due to other issues the TTT should still show the problems. When I did mine they ran the TTT, followed by freestanding, Valsalva, conduction, breathing and grip tests together then (when I was feeling particularly half dead) the neuro consultant for another 45 minutes. All the tests were conducted wired up to the heart rate and pressure monitoring. I find that sometimes the compression stockings help, and sometimes they can make the swings even worse.

Unless the low BP is causing problems (fainting or other serious low BP issues) it's fine if it is low. Obviously if it is causing problems or dropping when standing then it needs investigating. For myself when horizontal I normally have fairly low BP this drops as low as 80/50 sometimes a touch lower (the measurements were all taken during an extended hospital stay) but for me it's normal. Later on in the day my BP normally rises into 'normal' but has on occasion dropped on standing (biggest drop on medical records is a systolic drop of 50, diastolic 30), but I still function with the low BP so don't have any treatment for it. My father (who I get a low BP from but not POTS) recently scared the doctors with a BP of 70/45 . The neuro's believed that this was causing him problems standing upright so started the midrodrine. This caused lots of extra problems and needless time in hospital and lots of time sorting out the drugs. For him the problem was a broken hip (which he told them about) and once they'd CT scanned the hip and treated that he got lots better. He's always had very low BP, doesn't cause him problems and his GP is happy with it there. The scared neuro just complicated everything and made matters worse. So if you function fine with a low BP, don't worry about the numbers! A high BP is dangerous but a low BP is nearly always beneficial IF it doesn't cause you any problems.

Always can go for Marmite spread (Vegemite if you are antipodean) which has a huge amount of salt in it. Unfortunately lots of people hate it and it is a bit limited in many countries, but almost a salt spread for bread / toast.

At home on a pulse oximeter I normally have a heart rate increase of about 20 to 30. On the TTT (which I admit I was a bit stressed about and feeling rubbish from the 2 hour journey) they recorded a 50 BPM increase up to 150bpm. Along with that I recorded a BP that started at 134/77 then started dropping then maxed out at 180/104. I've never recorded that level of change (but I normally don't stay vertical when I feel like that) so you can't be sure what the test will show before taking it. Round here they say a significant pulse rate rise of the order of 30bpm or more than 120bpm (except if pulse rate very high at all times) I don't actually have a POTS diagnosis, as they are still trying to work out what is wrong. My doctor considers this as POTS, but she is wanting a specialist to come up with something other than unexplained dysautonomia. Hope the test is not bad for you and helps you move forward with your health problems, whatever the results. (I'd recommend not driving to the test, just in case you feel rough afterwards)

Really there is nothing left, cochlea implants require more than I have left, a brain stem implant is perhaps a theoretical possibility but as I still have ok (not great but I don't have a hearing aid) on the other side so not worth looking at. As regards the inner ear bone replacement, I already had this done twice, for me I got about a 20dB improvement. This faded over time which is why I left it so long with the hearing loss before going to the doctor's I wasn't enthusiastic about going under the knife again.

Don't panic but was just headaches, dizzyness and hearing loss. Until the CT scan was not really worrying. However my case is unusual and bad luck the symptoms don't normally indicate anything like that!

Unfortunately it was a tumor (non cancerous, yea!) but had basically eaten all the inner and middle ear, all the semi circular canals, and right up to the ear drum. Since it had also eaten the bone between the ear and the brain that was when things started to go wrong... Not having it removed was fairly obviously not an option. I'm pretty sure that the dysautonomia was there before but I was able to function - I keep having conversations with the doctor and physio about stuff and they keep saying 'that's not normal' but when you have always had this stuff you think everyone is like this. Now I've lost a bit too much and can't really function.

Tinnitus is annoying, I used to get it from time to time like most people. However for the last 2 years it has been constant on the left side. Wierdly this is after I had the entire left ear removed (they left the outside ear but cut out all the middle ear, sealed the ear canal, and removed virtually all the cochlea ). I had to have the nerve conduction study that shows there is nothing there but .... still the tinnitus. I mentioned it to the surgeon at the 6 week check {will go away in a couple of weeks}, the 4 month check {should only last a few weeks more, not longer than 6 months after the op}, and the year check up. Finally said 'it happens’ nothing more can do, and 'live with it' the nerve is damaged closer to the brain if it doesn't heal itself cannot risk cutting the nerve again. As the nerve was healing I often sort of heard music (like a neighbor with the sound turned up) I kept getting disturbed by this but I am sure it's like 'phantom limb' and is getting much less as the months to by. I'm fairly sure that for me the tinnitus is not related to the pots! I am trying to convince the local pain doctor to find out about using TENS for tinnitus, but due to my circumstances he wants expert opinion before he gives it a go. According to the TENS machine it can work with some forms of tinnitus - if anyone has tried it I'd like to know how it went.

Thanks for the tip, I have not had a tpo test just ft3 ft4 and TSH so I will mention it to my doctor. She did order thyroid tests last week but thought that a thyroid problem for me would have been unusual. Since I failed the tests I get another set tomorrow but the thyroid stuff wasn't on the second prescription so presumably isn't that. (I normally get the results direct, this time I opted for them to be snail mailed so I don't know what is worrying the doctor)

Also you might consider buying a pulse oximeter they are about €15 and are quite useful to have actual figures when talking to your GP. There can be a big difference between finger and toe oxygen saturation levels. I found that when my feet started going blue after standing too long a toe oxygen saturation level of less than 80% was possible, when the fingers still were at 97%. Following this data the doctor was very supportive of me lying down, and if I don't feel well / there's a delay at the doctor's they are more than happy for me to lie down in a consultation room to wait. On occasion I have had the consultation lying down as well.

Getting the right measurements is essential, if you check different suppliers they can sometimes have a size that isn't too far away from your actual sizes. I don't know if the NHS covers this but here the local pharmacy was willing to send someone to do the measurements, offer choices, colours and styles as well as supplying a loan pair for the 24hours before they could supply the chosen stockings. Check they are genuine and not copycat (ie they confirm to the accepted medical grades and not simply 'support' with no actual medical control) The full leg can be hot in summer, apparently the open foot type are cooler but never tried them. The more support means harder to get on if you've got the right size. They can still easily tear, which given the costs is more than a little annoying.

If you come up with any answers can you let me know? It sounds fairly similar to the dystonia that I have, for me it's predominantly the members and not the corps, and is fairly severe. As I could no longer flatten one leg the neuro thought of Botox, but after examining the rest decided that it was really generalised so started me on baclofen, this has helped slow down the progression, but currently up to 70mg a day having to take in the middle of the night as if I don't move the muscles they contract until they give up and start shaking. Since this hurts and wakes my wife up I take a dose at between 2 and 3 am. I don't have to have an alarm, as by that time the leg, arm and hand muscles are all so tense it wakes me up anyway. The rest of the contractions are annoying and make life difficult, except for the feet where the contraction from shoe size EU 48/49 to 45/46 (US 13/14 to 10.5/11) has made getting footwear easier at the very least.

As regards showers I make sure that there is someone around as my heartrate often goes over 180bpm in / after a shower. I have to lie down until it is under control, sometimes on the floor in the bathroom as I choose to lie down before I fall down. Shorter showers and making sure I have been horizontal before taking a shower helps.

Thanks for all the replies, I am seeing the physio tomorrow so can go through this with her. My general doctor is certain it isn't psychological and she arranged a whole load of cardiology testing (again) I did a lot of the cardio stuff last year in hospital but it didn't show much. The doctor thinks this is due to being horizontal virtually the whole time and being on beta blockers so this would mask any orthostatic affects. I guess part of the problem is I'm not too good with doctors, I leave things to fix themselves and then they don't - hence the problem with the ear I left until it became a continual issue and then had to have the entire inner ear removed, even if I'd gone earlier I'd probably still have lost the ear but maybe not.

Last MRI said yes, so the headache neuro said not an option, that said if I stand too long I do have a running nose. So - Yes I think this could be the reason for the headaches, but what do I know, the pots might well just be an also ran. The last blood patch stopped the headache straight away for 36 hours. Unfortunately one of the unhelpful neuros now runs the local hospital neurological department (35km) I keep getting referred to the major centre (120km) but there they are all super specialist so tell me things like I don't have Parkinson's, that said it was the specialist neuro that pulled up the pots, and according to the report an overreactive sympathetic nervous system. I'm hoping that this report (which is positive with real numbers and all that) trumps the one that said it's all in my head as after more than 2 years of serious problems I am tired of all the running round in circles.

I just got the results back from the tilt table test, which shows a heart rate increase from 96 to 147 in 10 minutes. However orthostatic hypotension isn't a problem at the moment as BP rose from 130/70 to 180/104. Whilst in hospital last year they did get orthostatic hypotension (systolic of 120 falling below 70 before they stopped - but not on a tilt table) This was the tenth neuro that I have been seen by, with varying degrees of success. I have problems with really tense muscles (spastic) which a previous neuro started me on baclofen (currently on 70mg a day) some of the others have been less than helpful. Some of the less than helpful neuro's have said it must be psychiatric, so having duly visited a psychiatrist for a few weeks, she said categorically organic and not psychological. Great but I also today got a report from a different psychiatrist who came out with Ganser syndrome (look it up - I'm faking and a whole lot of other uncomplimentary stuff). All of this started after I had a tumor in my ear, this turned bad (as in surgeon (after surgery) said sorry couldn't do the operation as brain had fallen into my ear and I had a CSF leak) then getting meningitis before they could do the re operation. At this point they found out that I had a neurological deficit and can't use my left side properly. They then fixed the tumor in a 7 hour multiple teams operation and of to rehabilitation as I can't walk very well (20m with a cane) and put me in a wheelchair as even when I walk it's rather unstable. This involved 142 days as an inpatient in hospital in 2016. I also had a pretty huge number of MRIs - 8 and 5 CT scans. Luckily I am now on disability, the deafness almost covers it before any thing else is considered. I am lucky in having a primary care doctor who thinks it isn't psychological and wants to help, along with the chronic pain centre who think that passing it off as all in the head is a cop out. In order to be vertical, because I get really bad headaches, I am on slow release tramadol. When they get really bad I have the quick tramadol, or I lie on the floor for half an hour or so. The worst aggravating thing is vibration so I don't get out much. Because of the muscle tension I am on baclofen and have physio twice a week, the muscles are permanently tense so I have contractures and have lost two shoe sizes. For the nausea I have primperan (metoclopramide) which I only take when I am starting to throw up. That about sums up the potted medical history, but I didn't cover everything. Any comments on if this sort of thing is usual, and if anyone has a clue on the muscle stuff that might help!