GasconAlex

I caught COVID for the first time (multi vaxxed) last week. Went to the doctor on Monday who immediately called for an ambulance which admitted me to the local hospital. Breathing way too fast (66 breaths per minute) but saturation remained ok and the lung scan was good. BP for me remained stable but lower than normal even with IV fluids and drinking lots. Got out of hospital after 4 days because I'm stable but with a very low WBC count and I remained saturated (ish) throughout. I still have a lower bp than normal and even worse tachycardia but since I am spending time horizontally it seems to be getting better slowly. I'm just taking things even slower than normal. Nurse visit tomorrow to take bloods so hopefully my WBC count gets back towards the normal range. Hope things get better for you soon.

Geology is an excellent choice. I'm a little surprised that the university insisted in this chemistry practical for your daughter (with her obvious issues) In my opinion it would have been far better to offer a written assessment of practical skills or to have allowed an assistant to undertake the practical work following the orders of your daughter, since this type of lab work is not necessarily a fundamental requirement of the further course. The stool option also posed no real risk either. My mother (82) did Geology and my niece has a doctorate in it. Hopefully your daughter will also enjoy it!

I'd think that it will be very difficult to put in assistance in the chemistry lab even after a disability assessment. My first degree was half chemistry and I have also worked in chemistry labs in industry. I don't now and can't see how a lot of wet chemistry lab work can be accommodated if you have severe issues. Obviously you have to wear all the protective equipment and cannot drink in the laboratory. You can take breaks but the necessity of removing protective equipment and making sure that your hands are clean before drinking means frequent drinks breaks are out. (I used to work with someone who put on new disposable gloves to eat and drink to avoid contamination) If you need crutches you will need at least a lab stool in order to manipulate the equipment safely (I cannot see why a lab stool should not be allowed but these are not that much off vertical) She will not be able to carry and move equipment/ reagents with crutches it just isn't possible. She could be able to work at fixed positions with all equipment and supplies to hand. As long as the lab is fairly basic this might be possible. There is also the danger of reduced mobility significantly increasing danger in the lab. I don't know exactly what level of chemistry you are talking about but during my university lab time I have twice seen the emergency showers having to be used. (Emergency showers are basically a high powered shower IN the lab with no access restriction. You go (are taken) to the area and a chain is pulled drenching the entire area whilst all the affected clothing is removed / cut off - there is no privacy. Once the contaminated clothing is removed you can start treatment for whatever it was spilled on you) Because of the safety issues I think true chemistry at a high level in the laboratory is probably going to be very difficult. (Some physical chemistry (as opposed to organic or inorganic chemistry) might still be safe. As will basic chemistry not in a high level lab. ) Other branches of lab science are much more adaptable for disabilities. I've known biochemistry, immunology, pharmacology and many more lab based sciences adapted for those in wheelchairs. The difference is basically the volumes of 'bad stuff' you deal with. In biochemistry if the experiment goes badly wrong you are likely to be contaminated by a small amount of reaction mass that should easily be protected against by the lab coat etc. In chemistry at university level you can be dealing with really very nasty chemicals in volumes that can cause real damage. Even when you take protections things can go wrong. I once had to spend a couple of hours talking to the anti poison center because I ended up with a nasty bromine burn because the glove I had been wearing had a microscopic hole in it that I had not noticed. Hopefully you do sort something out but full wet chemistry is going to be difficult.

ENT specialists can be quite different in their expertise. I have a local (ish) ENT, a specialist ear only surgeon who I do most ear stuff with, a neuro oto surgeon who is an excellent surgeon but awful at talking to people and I personally dislike but he's one of only two in the country for what he does, then I have a neuro rhino surgeon who only deals with those issues. Occasionally I get to see others for extra tests. They all are ENT specialists but all have different areas of expertise, except for the local one who only deals with my hearing (he took one look at my files and said it was far too difficult for him to interfere with).

What you are describing is a very mild nystagmus where the eye tracks horizontally. This can be severe with the whole room moving constantly, including when your eyes are closed. This is normally due to a defective link somewhere between the labyrinth and the eye where the eye tries to move according to information from the ear. If anything on the link screws up it can cause true rotational dizziness and nystagmus. To test this you need the fun ENT tests including pouring warm and cold water onto your eardrum, the video nystagmus tests, the spinning chair test and the head shaking test. Has your ent done / prescribed those yet? They are normally fairly good at quantifying the problems even if they are not pleasant tests to undergo.

I'm sorry to hear that, MSA is not at all good. Try and see a speech therapist¹ for the dysphagia as they can at least point out good practice even when your muscles don't cooperate with your brain. Dysphagia is insidious starting as inconvenient and can become life threatening so needs to be treated seriously. Hopefully the doctors can agree because in my experience neurologists can be quite contradictory from one to the next. Remember that you are the patient and the important one, do what is best for you not just what the doctors think is easiest. ¹ at least that's who deal with dysphagia around here, which I found was surprising!

Dizziness is tricky. Partly because so many people refer to dizziness meaning different things which means that you'll need to explain exactly what you mean to an ENT doctor. There are some drugs (personally I found they didn't work for me) but it really depends on the underlying cause of the dizziness. The vestibular system comprises the inner ear, eyes and proprioception and after time you can survive with only 2 of the 3 working. A great website is Dizziness and balance which covers a lot of the problems that you might have. If your dizziness is ongoing (more than a couple of weeks that might be an ear infection) you need to get a specialist opinion because there are some serious issues that might be possible to fix or need serious medical intervention. My initial symptoms were headache and dizziness which actually indicated a tumor that had destroyed one ear and had eaten through to the brain. Cases like mine are incredibly rare but dizziness needs to be investigated whenever it ceases to be transient.

I'm surprised that the ambulatory BP measurements had so many errors. When I had it done there were only a couple of errors in the readings. The only issue I had was the inconvenience of the cuff inflating every 10 minutes (20 during 'sleep'). From what I understand with post prandial hypotension it's the blood being directed to the gut to process food that causes the syncope. I would guess that the same advice that I have (in order to try to prevent further weight loss) might well work which is to split meals up as much as possible to be small and frequent. Hopefully a 'food management technique' will help solve / reduce this problem for you.

Here the TTT are always the domain of the neurologist because they do them with a whole battery of other tests to check if you have any deficit in the autonomic nervous system. They tend to be quite thorough, mine was 4 full pages of the condensed results and took a full morning for the testing. For mine which was well positive with a huge orthostatic rise and positive for pots I was sent to a cardiologist who then interpreted the 24 hour holter and blood pressure monitoring. The cardiologist then said that although the heart rate went up significantly on standing this wasn't immediate enough in her opinion to qualify. (Well within the 10 minutes of the TTT definition of POTS though) She also noticed periods of low BP which might be a concern but since they were not causing problems needed no further investigation. (So why was I going to the doctor then?) My point is that it depends on the doctor. I had a much better experience with this neurologist than with the subsequent cardiologist who is not up on POTS evidently.

When I had hydrotherapy sessions I used my pulse oximeter in the pool (I kept it well out of the water!) Standing in the pool gave me a pulse rate barely higher than lying down. For me this really helped as could exercise vertically without having a problematic heart rate. Unfortunately due to my physiotherapist moving I couldn't continue but the local hydrotherapy pool is almost back in service so I hope to restart soon.

Seen this also for tinnitus but to stimulate the vagus nerve it needs to be a special electrode for the tens machine that sits within the left ear canal and not on the ear (otherwise you stimulate the ear not the internal vagus nerve). Discussed this with my ear surgeon and apparently it can work at modulating the symptoms of anything affected by the vagus nerve. But since I no longer have a left ear canal it was a non starter for me.

If the seat height is a little too low you can get a cushion to add a couple of centimetres, they also are more comfortable if you are seated for a long time. A decent cushion can be quite expensive though (mine was €70 but covered by the medical insurance). I did buy a cheap additional one but it was not worth it really. Always better to be able to walk a bit if you can as getting over obstructions can be difficult and if you can walk it's normally better for your body. Glad you found something that works for you and the 30 day free trial was a really good thing as buying something (or having the insurance buy something) that ends up not working as you need it to is awful.

Walkers are not designed to be sat on and moved. If you need that you need a wheelchair! Manual wheelchairs can be exhausting and they are difficult on rough ground. If you get one the right size you can power yourself with your feet. This is especially important going up hills but is a lot easier in reverse. If you have someone willing to push then transfer chairs are good. You might find one that you could move with your feet but I would try it out first. (If your feet are close enough to the ground to push the foot rests will hit the ground frequently) Transfer chairs often have thicker wheels which helps on uneven ground. Alternatively there's powered options. Powered wheelchairs are great as long as you don't want to get it into a car! I've got an electric wheelchair that I use for getting around outside and the garden (it's a very large garden!) but I never take it away because it is heavy and very difficult to get into a car. However you can also get powered mobility scooters. These can be light and convenient and although not easy can be transported in a small car. The choice there is limited only by your budget as there are 'skeleton' options that fold up airline bag size and under 20kg. The light scooters do have range issues and I found that they didn't cope as well with rough ground as my electric wheelchair. If you can find a shop with lots of options spend some time there to try things out. You can always ask people about their scooters / mobility aids when you see them most of us are willing to advise and have experience in the plusses and minuses of the options. It's best not to buy something that you see on the internet until you have tried it or know what it's like as you don't want to be stuck with something that doesn't work for you. Last point is that wheelchairs are adjusted for your size and leg length and a poorly sized wheelchair is awful. Some size adjustment is done with a adjustable pieces but some adjustments are actually different pieces so with these you cannot adjust the chair to fit you need the correct size to start with.

The answer to deconditioning is physiotherapy. They should be able and equipped to handle even massive muscle loss. Luckily (sort of) I was in hospital neuro rehab for 4 months a few years ago so I got to see a lot of the options for people with extreme problems. They started from the base of people who had been in a persistent vegetative state for a long time and had serious neurological issues. They had options to help virtually everyone recover at least some functions. They should be able to help you. There are pedal only 'bikes' that you can buy pretty cheaply that you can use with your own seat to provide a low cost recumbent bike. The pedals can also be set to a light resistance to help your arms too. The only problem is that you get out what you put in so even if it is really hard it's generally worth the difficulties in continuing. If you are able to access hydrotherapy that really helped me because even being vertical in the pool the water support means my pots heart rate stays low(ish). Good luck.

It depends. Sodium is a part of sodium chloride (salt) so the mass of sodium is only part of the total weight of salt, hence the conversion tables. But sodium is present in lots of other compounds too (such as sodium bicarbonate) and lots of other naturally occurring in foods and drinks. This makes life complicated! If you are trying to increase your blood pressure then salt increase can help but just trying to have as much as you are comfortable with is a good rule of thumb. Increasing your salt massively will not increase the BP in a linear manner. Salt can increase (or decrease) your BP by 5 to 10 mmHg so is quite useful. Similarly drinking lots of fluids can add even more but then you need the toilet lots too which makes life difficult. As far as I know if you are having a high salt diet make sure that you test your blood sodium and potassium as well as kidney function regularly because you really don't want to damage extra things.

Red blood cells don't get bigger to carry more oxygen. If they are deformed they carry less oxygen but you can't change the physical properties of the cells or the haem subunits that actually carry the oxygen or the CO2 to carry extra! What does happen is that you can make more RBC so a given volume of blood carries more oxygen. This should happen over time if you live at altitude but doesn't always especially if you are iron deficient. The increase in cell density reduces when you start living at a lower altitude - if everything is working correctly.

Something that helps the pots tachycardia and reduces some of the other symptoms are compression stockings. Not sexy, horrible when hot but they reduced my tachycardia by about 20bpm on standing which really helps with everything else. Since they are not pharmaceutical you only have to put up with wearing them. Get them properly measured and make sure that they are at least thigh high whilst being certified as class 2 compression (not sure if the USA uses the same grading system)

A point about exercise bikes is that the sit down models with full seat are much easier if you have problems standing than the traditional push bike type. If you can start sitting you can get the muscles moving and working well before having the stresses of being vertical. There's even powered recumbent bikes (used mostly for serious brain issues) that can turn the pedals for you if you find it too difficult. (Your feet get strapped to the pedals and they turn slowly and you can help some of the cycle if you are able)

Nausea is fairly constant for me and when I try to eat normal sized meals what normally happens is I gag and cannot finish the meal. Smaller meals help but keep an eye on your weight. I have a constant weight battle because of the nausea. Currently I'm losing about 500g a week consistently over the last 6 months which when I wasn't overweight to start is an issue.

This is from an article about EDS (not sure of where the full research is as this bit was quoted in a different article. I have not been diagnosed with EDS (but have got relatives with this diagnosis) was very flexible up to about 10 and then became very inflexible. I have problems with stability in my joints with frequent subluxations which causes my physio lots of issues as she has to take care not to dislocate the joints whilst trying to keep range of motion. She considers all my joints hyper lax but my muscles work overtime to compensate.

Not sure if related to the dysautonomia but because of damage to the nerves on the left side of my face I have problems looking to the left. This was first picked up by a physio who said it was important to get it checked out. When to the local orthoptist who realised that part of my troubles come from fighting to correct for double vision. Once she'd run a few training sessions she said that it wasn't improving and to try prisms ground into glasses. This did and does help prevent me from getting double vision except when I am really tired. As for costs these vary hugely but can be quite cheap. With my last pairs (distance and close were covered by the government insurance - varifocal didn't work for me) I also bought distance vision tinted (as bright light is an issue) with the prism ground in for €29 with no contribution from anyone else. Look around because some prisms can be ground into standard glass blanks and some opticians pass this on to you.

More likely to be a leak. According to my doctor. It should also be clear and like water. If you wipe it off with a paper hankie it should dry leaving no trace. You can have liquid build up for other reasons but CSF is more likely to form pockets. My otosurgeon did a quick endoscopic look at my sinuses said one sided fluid pocket with no clear source and passed my off to a rhino-surgeon with the prescription for the CT scan and MRI. When my leak is worse my POTS is worse. But there's always a low level drip.

Skull based CSF leaks are tricky. If your nose leaks on both sides then it is much more likely it is not a leak. Leaks also tend to leak more in certain positions and less in others. There's some testing of the fluid that can show a leak but it is difficult. If a CT scan shows damage then the chances of a leak go way up. MRI's are not so good at detecting bone damage so are often secondary. There is a fbook group for skull based CSF leaks. Most ent's will not have experience with this. You need a skull base surgery (nose) to be able to do anything. (The skull base surgery also has an ear branch which uses entirely different surgery to get at the skull base) A general ENT would probably need to refer you to a good specialist. I doubt that a general doctor would know exactly who to contact in your area as it is highly specialised (could be wrong but my rhino surgeon, oto surgeon and neuroto surgeon all wanted referrals from a general ENT before accepting appointments) Some people with leaks do get fixed but skull base surgery is often fairly tricky. I've had several surgeries to fix leaks in the ear and in the nose but still leak.

@Sushi I wear them during the day when I'm up but when I've been hospitalised and forced to stay absolutely horizontal all day (try eating and drinking lying on your back without being able to turn to your side) they insisted I must have the stockings (thigh) 24 / 7 along with the anti clot injections. @Delta The problems started when I was away on holiday normally I take pills and spend most of the day vertical but on holiday I was forced to use my wheelchair all the time. Because of the peripheral vascular disease ( sort of super Raynaud syndrome that affects the feet, hands and lower leg) I ended up with lower leg damage and open sores by the time I got back. The doctor then said that the tights (full leg version) would help if I was forced to stay sitting for long periods and also help my legs get better. Now, after 3 months, my legs are better (mostly) and I'm trying not to wear them all the time ( the doctor says she'd prefer it if I wore them every day but it is only important if i end up sitting for long periods). The tights are professionally fitted. Once over my ankles (which some days I need help with) I can get them on, the feet and ankles are really difficult though. My doctor has some issues with the heart rate (50bpm increase on the TTT) but would rather I didn't take beta blockers as my bp is really quite low anyway. She suspects it's all to do with the cranial CSF leak which combined with connective tissue problems means neurological problems with hypertonal muscles and too many drugs anyway. e

Do you become dependent on compression garments? I've had to restart using these because of blood pooling in my lower legs caused significant damage. Now as the damage is mostly repaired I am reducing their use but have found that my heart rate variation is much worse without the garments but I got no corresponding improvement when I started wearing them again initially. I would prefer not to use them (except when I'm not mobile) as it complicates an already fairly difficult life.