GasconAlex

Although not good to be ill, it would be great if you could get a definitive diagnosis with positive test results to back things up. Hoping you don't have too long to wait and the testing is successful (? not sure on correct adjective here, but you know what I mean)

Well if true I have certain difficulties.... Having had one side of the inner ear vestibular system surgically removed it might be a cause of some of my issues. Currently enduring vestibular therapy but not hopeful of any improvement. If they prove the link it might help convince some of the doctors about the issues because I often fall into the chasm between specialities. (Neurologist says must be ENT issue because vestibular, ENT says neurological because no ear left)

I don't have this problem with lab results because I get a copy of all my lab tests. I then have this on hand to offer to any new specialist. They then consider the past results before deciding whether to redo tests because they are too old or add anything more. What's more is that outside of hospital settings I choose the lab who deal with all the tests even if these have to be sent away, and the blood draw is also done with a nurse home visit. Another example is a recent cranial MRI, since it was a bit of a wait as it needed a high end machine I had a different request from a different neurologist for a similar exam. I contacted the university hospital that was going to undertake the MRI and they were happy to look at the prescription. Because it was a similar exam they agreed to do both at the same time and then send both reports to both doctors even though the new doctor was not in practice at the hospital and at the same cost (although this is picked up by the state anyway in my case) Here we are expected to have copies of everything and everything also gets copied to your PCP/ GP so much less duplication of tests. The only downside is that when they ask you for extra tests / exams / specialist specialist visits you have to organise them but at least this means that the appointment times are possible to get to. The system here is not perfect but I'm glad I don't have to suffer like many of the rest of you.

It depends what you mean by dizzy. Try looking at Dizziness-and-balance.com which is excellent for listing causes for dizziness and might give you help in narrowing down the cause of your dizziness.

A list helps. Even with a person having a list with what you need from the appointment helps. Leave gaps to make notes and if you are really struggling you might be able to give it to the doctor. I also have a truncated medical history available but because it's huge and complex in my case I don't take it out unless asked for something from it. In some countries, I don't know about Australia, you can have either a social worker or a volunteer from a local disability or medical charity who might be able to go with you. You might find someone sympathtic who is willing to help you- if you are lucky. Here I get a fairly generous mileage back from the government for going to appointments further afield so this can be used to compensate friends or volunteers for their time and petrol. Not much help because it's really difficult being ill on your own, I'm lucky my wife helps lots because I started making stupid errors in appointments when I was on my own in the appointment.

Use a pill minder app or just the timer on your phone. It's the only way I remember to take the pills at the correct time, my phone shakes at me at the proper times then every 10 minutes until I tell it I have taken them. Try being in a wheelchair to stop spontaneity. At least 48 hours notice to use the train (they refused once at 47 hours 15 minutes) and having to prepare itineraries to see if the station, buses and roads are accessible (in lots of places the taxis aren't an option either). Even going out for the evening or shopping is tricky.

It depends what they are intended to cover. I've found the term rather flexible depending on what they are trying to do. When I was in long term rehab I did have quite a few sessions / evaluations and ended up with rather odd results. The results were consistent but not following the normal patterns that they were used to. (This was neuro rehab who mostly dealt with strokes and brain trauma. Those of us with more minor brain injury and damage from tumor removal were in a very tiny minority.) The tests themselves ran the full range from basic mental function to things like the Wisconsin card sorting tests and took hours in total. If they want to add a psych assessment as well that was separate in my case and mostly a waste of time as (for me) he didn't look at the case history and came up with utter rubbish (to quote my GP). I've kept the results in my files but never have had to use them as I qualified for disability without any issues. Then again my government is fairly generous on medical and disability benefits.

I would not hold out much hope on neurosurgery helping out. The last one I saw said he could only help on major defects that show up on images. Otherwise he redirected me to neurology who do use tests to justify problems but in my experience are difficult to get to do anything unless you have an obvious and simple problem. Neurology here does a full range of autonomic testing but is most focused on the severe forms so other than noting that your results are not normal they don't then follow up on them. Sorry to be less than helpful and I hope you get something positive from your appointment.

I did have a tb test done due to sharing a hospital room with someone who later turned out to have TB. Absolutely no problems and I managed to avoid getting TB too. No issues with any other vaccination either including meningitis, covid, flu and a few normally only given to children and immunosuppressed people.

Although not a fan of them, especially when it's over 40°C outside, compression stockings are great in that they don't interfere with your body chemically. Personally I would rather keep the stockings (which look like socks if you wear trousers) and not take another pill! I have started getting some skin issues with the anti slip bands but by changing between two marques with different techniques (one a complete band the other with spots) this is just about manageable - it's mostly heat related I think.

Luckily the surgeons all wanted me!

It's always easier if you are one of the crowd because all the options are well documented so even if you have problems with one set of drugs etc. there's always the next layer down. If you have rare (or really atypical) conditions then it becomes complicated and you need to find doctors who are willing to give you the extra mile. Your illness is also well covered within the specialties. For those of us that fall through the gaps it is really complicated. I remember being in hospital with specialists from ENT, neurology and neurosurgery having a bedside argument about whose department I should be under and therefore which floor of the hospital. Luckily for me all my administrative stuff is all based on symptoms because they know that a full definitive diagnosis can take years and even with the same illness the problems it causes can be vastly different.

Excellent to get a referral and I hope they take good care of you. At the very least they should be able to do a full range of testing which should show some of the scope of your issues. Hopefully this referral gets you seen.

Honestly was this a medical doctor? The pepcid will help with GERD symptoms but not a lot else and the alpha lipoic acid is just a food supplement - this means that they have not tested it under proper pharmaceutical conditions and is not regulated as a medicine here. I would be incredibly sceptical on any doctor who said take anything and you'll be healed as honestly this cannot be guaranteed even on simple stuff and dysautonomia is anything but simple. If they are proposing changing any other medications you take I would take advice from the prescribing doctor before making any changes. If you are currently taking any other medications many require gentle phasing out in order to prevent sometimes catastrophic effects. I've known two cases where a doctor has advised quitting all the drugs. The first (a neurologist) recommended cutting out all anti seizure drugs for a severe epileptic - luckily they got a second opinion who informed them that if they had followed the advice it might well have been fatal and reported the neurologist to the board. The second was a GP who stopped lithium and high BP meds for a friend with predictable but luckily non fatal results but the hospital wasn't happy. I'm not a doctor or giving medical advice but take a second medical opinion before following this advice.

Just saw this A Liver Disease Gets a New Name, Diagnostic Criteria Nonalcoholic fatty liver disease will now be called metabolic dysfunction–associated steatotic liver disease, or MASLD So you get to change disease names, which always confuses everyone! Hope your next appointment goes well.

I have muscle spasms and hypertonic muscles which may be related to the pots. Mine started after a failed operation (because my brain had collapsed into the ear space and was leaking CSF) and the hospital I was in was could not complete the operation without additional neurosurgical support. They initially suspected an adverse reaction to the anaesthetic but now more likely to be neurological damage. If you are lucky (!) it is a reaction which apparently diminishes in a timescale of a few weeks (from what they initially told me). I take quite a bit of baclofen (70mg/day) which helps a bit but I still have spasms and myoclonus.

My vision varies with fatigue. I have diplopia and have prism lenses to help reduce this. My orthoptist expects vision problems to get worse later in the day and worse if doing close work. If you are feeling better and less tired then I would expect you to have fewer vision issues. (My vision issues probably stem from nerve damage during one of my operations. The physiotherapist picked it up (not a doctor) and this was confirmed by the opthalmologist and orthoptist. Unfortunately the damage cannot be corrected but was a cause of increased fatigue.)

It's important to eat! I have eating issues around nausea and also with suddenly feeling vomitous during a meal (between one bite and the next and I have to abandon the meal (which wasn't large anyway)) Even if it is just mechanical and you feel nauseous (there's pills that help a bit) you need to keep an eye on your weight as if you don't want to eat then you start losing weight, and this can become serious. You really don't want to have to eat the hypercaleric hyperprotein supplements in order to maintain your weight (I've been forced to eat these after losing too much weight.) If it continues try small meals more frequently as this helps with GERD and some nausea issues but keep an eye on your weight and talk to your doctor about it.

There are machines that objectively measure the ability of muscles to work. When I was in neuro rehab they had machines attached to computers that resembled weight machines but measured both repetitions, length of travel and fatigue for the arm joints and leg joints whilst seated. You sat down and then did a minute (or 30 seconds) of arm curls, leg curls, butterfly etc. with the machine both supplying resistance and measuring force applied etc.. The machine was mostly used to have objective measurements to show recuperation of function after strokes or head trauma. They were non invasive and clearly showed both progression and fatigue in the muscles whilst simultaneously measuring heart rate and breathing rates. The set up could easily be used to show exercise intolerance too. I don't have the makers name or links as I never used this myself but have seen several people using the setup and having the results graphs compared and explained by the physiotherapists who conducted the testing.

There's some evidence between CSF leaks and dysautonomia eg. https://pubmed.ncbi.nlm.nih.gov/31118385/ If you have intracranial hypertension this can cause spontaneous csf leaks and then cause hypotension. The symptoms of intracranial hypertension and hypotension are basically the same so it's really hard to know without having a surgical procedure to install a temporary measuring system. The whole CSF system seems to be poorly understood and leaks, blockages, pressure regulation, and problems with it seems to cause different symptoms including dysautonomia.

Most issues with the cuff are due to placement on the arm and making sure that it seals properly on itself so does not move in the test. If you can get someone to show you the correct placement on you this might help. Another technique (which is pushed here) is taking 3 readings in a row, 3 times a day for 3 days. If you discount readings that are obviously bizarre the 3 readings should give you a pretty good average. Taking the readings 3 times a day should show variation within the day and taking it for 3 days should hopefully give consistency. Another thing that throws off BP cuffs is if you move your arm or hands during the test. This includes unintentional muscle tremors that throw off the readings. Pulse oximeters are fairly good but can have errors particularly if you use nail polish, some skin tones or if you have poor circulation. I haven't found much difference between the more expensive ones and the cheaper ones (15€) as long as they have been validated. They are pretty good at showing heart rate variability on standing.

A possibility - if you can find a dentist that will do this - is no injections or anaesthetic at all. I used to have (unfortunately she retired) a great local dentist that used a clove oil based nerve killer. She was able to stop as soon as the tooth became sensitive, apply the nerve killer then put on a temporary filling. The next week she continued until the work was done. This worked even for root canal work and crowns. The disadvantage is that it took multiple appointments to finish any work. I don't have a bad response to dental injections they just don't work for me. In my case they inject the maximum authorised and wait and at best I get partial numbing. This is a problem for my current dentist as he is too busy to accept the multiple appointments for less money (doesn't get to charge for the injection)

Unfortunately for me after a positive tilt table test (150 BPM) I was sent to a useless cardiologist who said that because the holter test showed the rise not being 'brutal' on rising then it wasn't POTS. Part of the problem for me is blood pooling and so takes a little time for the blood to accumulate and the loss of blood to be felt elsewhere with a crazy heart rate trying to keep up. Luckily my primary doctor realised this and suggested compression stockings. Not perfect but they help. Doctors tend to be a mixed bag and a few are really good. Unfortunately there are quite a few that misinterpret the test data and don't understand things outside the normal. Hang in there!

No surprise that you are fainting more with a vasodilation drug as this will tend to lower blood pressure and if this is the cause of your fainting then you will faint. If it improves the migraines then you could add abdominal binders (presume you already use compression stockings up to the thighs?), but personally it would have to be a massive improvement in the headache department in order to risk the dangers of fainting.

Physiotherapy is also really good to make sure that you do the exercises. It's much harder to backslide when you have someone making sure that you do the exercises. They can also help by giving graded exercises depending on your progress/ state of health. The exercises should help so a great opportunity.