Sarah Tee

Another update – nothing of significance to report yet Raising the bedhead seemed to help on the first two days, but the third day I felt a bit shaky (not a normal symptom for me). Put the bed back down and the feeling went away. I think I need to raise it more slowly and gradually. Having small alteration/painting done to house and currently sleeping on different bed that can't be raised, so will have to get back to that experiement when I move back into my bedroom. No joy with the physician – appointment was given too late to be of any use (only a week before dysautonomia specialist appt in August) so I cancelled it. Am now hoping to get on to local cardiologist to give me at least moral support until August. Found out yesterday that a cardiologist visits my GP fortnightly to see patients!!!! Unbelievably, even though I have been banging on about orthostatic intolerance for one year? two years? I'm losing track – none of the GPs ever suggested I see him or consulted him about my symptoms. I have been feeling so rotten that I have asked my dad to step in and advocate for me, not on the medical details but on the management and support that I need and haven't been getting. I am so tired of being let down that these days I respond with tears of despair rather than assertive efficiency and "moving on". Am seeing yet another GP. He seems okay so far. Will see how he does with getting cardiologist on board. Am hoping to wangle temporary IV fluids from cardiologist to tide me over until I see the specialist. Maybe once a week if I can convince hime and it helps. I can't take feeling this bad every day for another three months.

One way you might get onto a specialist with dysautonomia in Sydney is by having your GP refer you to a neurologist that they know is good, and being specific in the referral about the dysautonomia. Then that person will likely contact your GP and say "I am not the right person for this job - you want Dr X". And the referral can be forwarded to Dr X or your GP can write a new one. This happened to me recently with a referral to a GE surgeon. Turned out he didn't specialise in my problem, but he knew who did, and my referral was quickly passed on to the right person. There doesn't seem to be anyone listed outside Victoria on the dysautonomia specialist list here. And the two Victorian ones are cardiologists. Hope this helps! Sarah (near Melbourne)

Where could I find the DINET survey mentioned in this article? Thank you.

A sort of a negative update: I tried abdominal compression, almost by accident (I was sitting in an odd way squeezing a pillow against my abdomen and tensing my arm muscles and noticed I suddenly felt better). It worked twice. When I tried it on a third day, I got the same kind of headache that I got when I persisted with the salt & water loading as described above. Sigh. I am now trying raising my bed head. One night so far (last night). Was a bit uncomfortable, but only because of the angle. Did not feel any other effects. Am waiting to see how it goes. I usually feel rotten in the morning because of a different medical problem (failed bowel surgery) and poor sleep because we are having noise problems at the moment. The physician has not responded to my referral. Don't know what's going on there. Will have to phone. Hope he hasn't written me off as a nuisance/mentally unstable. This is always my fear when pressing for answers. Argh.

Yes, I can relate. (I don't have EDS or POTS/heart rate problems.) My symptoms (fatigue, OI) used to only show up in the morning, and would disappear by morning tea. Then they extended further and further into the day, until now, 15 years later, I don't feel better until late evening. But many evenings I feel completely normal and you will find me doing chores, exercising, cooking and trying to have some kind of life between 11 pm and bed. Obviously something in the body isn't right, but comes good later in the day. So far no answers. I did see another person here who has abnormal cortisol if tests are done first thing in the morning, but normal if taken in the afternoon. If you search this board you will find a subset of people do feel better in the evening (not everyone). So we are not alone in this 🙂 It's frustrating to think that maybe if tests and medical exams were done outside business hours, someone could find something that might be actionable, to use a horrid business word. I had a vague idea of going on night shift – sleeping in the day and staying awake at night to see if the pattern would alter. But the sleep disruption would be risky in case you couldn't get back to normal afterwards.

Headache is listed as a symptom of overconsumption of water and of too-rapid administration of IV fluids (or too much). I haven't read that salt & fluid loading as prescribed for dysautonomia/OI can cause headaches, but it doesn't seem like too much of a stretch. Given that some people find that they get no benefit from water & salt loading, there could be a subset of those people that end up overloaded and get a headache from it.

@Knellie, here is an article, rather long, but the author states that fluid loading did not work for her and she is being treated at Vanderbilt. https://wpde.com/news/local/the-article-i-wish-id-had-diagnosed-with-pots-and-still-anchoring-the-news

@Knellie, I don't get migraines, but I did find that although increasing my water & salt intake helped my fatigue for a few days, after that the same amount seemed to give me a fairly bad headache/pressure feeling and did not help with the fatigue any more. I stopped the fluid & salt loading and the headaches went away. (The same thing happened when I tried abdominal compression.) I did also read a post on this board from someone who got headaches from having IV fluids. Four months seems like a good long trial to me. You gave it a good shot but it didn't work for you. One problem with a POTS diagnosis is that POTS is a syndrome – meaning a constellation of symptoms that tend to occur together in patients. But no-one knows if all the people with those symptoms are suffering from the same underlying cause. It's a bit like being diagnosed with a fever. It gives you some useful information and can point to treatments, but it doesn't pinpoint the cause, it just points the doctor towards "maybe there's an infection". Doctors have trouble understanding syndromes too. They might think "extra fluid is a treatment for POTS", but that's not proven, just a trend. It's not the same one-to-one idea as "penicillin is a treatment for strep throat". If a patient had strep throat and wasn't improving on antibiotics, the doctor should question the diagnosis. But if a patient with POTS doesn't improve on extra fluids, that doesn't necessarily mean the diagnosis is wrong, because POTS is a syndrome. I have read a couple of really good articles on the meaning (and lack of meaning) of the term "syndrome" in medicine, but of course can't find one now. Anyway, hope I conveyed the drift.

Thanks @Pistol and @Jyoti – I am going to quit that practice. It is about 20 mins away, but there is a larger town 40 mins away with plenty of practices. In Australia, we can go to any general practice that has vacancies, so I will be able to "shop around" to some extent. I used to visit the larger town once a fortnight or so for shopping and social activities, so I don't mind going there. I like the idea of gauging the doctor's receptiveness. I would love to have someone that would work with me. One doctor I tried out for a while was completely passive, and I was telling her what to do, with no input or plan on her side. Then you get the opposite, where they say "no" to everything and won't listen to you. I found out there is a plan that can be drawn up for patients that have chronic conditions or who have to see various specialists. Your doctor gets a little extra time funded to coordinate your care and there are regular follow-up dates set. I am going to try to get that done, because once you have it, it can be referred to if your usual doctor is away. I am not sure if it is transferable to another practice if I have to change again – will have to find out. My blood pressure, which is usually in the normal range, went up to 170 tonight. I was lying in bed for an hour, but I found myself feeling as though I'd just been exercising. Had a cup of tea and read your nice messages, and it is going down. A small taste for me of the unpleasantness that the rest of you feel with raised BP every day. Next week we are getting some minor work done on the house. American-inspired storm sashes on the front windows, new solid-wood doors, and the kitchen partitioned off (with a door that can be opened wide). Should improve the cooling in our hot summer and cut a bit of street noise. So I'm trying to think of that to look forward to.

Hmm, I never drink alcohol (because of an unrelated medical thing), but it would be interesting to try and see what happens. Not as a treatment obviously 🙂

I am asking around to various people for their recommendations, so hopefully that will help. (Also, I didn't mention that there was some kind of meltdown in the admin staff at the practice late last year, which I was inadvertantly caught up in, and had two staff being very unpleasant to me. The other day I got a reminder call from the practice on another phone line, which I answered without knowing where it was coming from. It was not from a different staff member, but after the call ended I found myself shaking. Ashamed that they got to me, but the fact is they did.)

I am feeling a bit teary today. I found out that the GP who I was starting to build up a decent relationship with has gone on leave for at least a year, possibly not to return to the practice at all. Prior to him, I had an older female GP who was pretty good, but she retired (well earned of course!). Then there were staff changes and not much help for a year until I got onto the chap who has just left ... So yesterday I had an appointment with a new doctor, and although it started well, she didn't know anything about my history, which is reasonably complicated, and by the time we got through the relevant bits, I got the feeling that she just wanted me out the door. I don't blame her; doctors are in a difficult situation under normal circumstances, let alone recently. But here I am, facing starting from scratch again with a new doctor, whoever it is, trying to get them up to speed on my history, establish my "patient credentials" as someone who really needs help, educating them about dysautonomia (probably), educating them about my failed bowel surgery (it's an uncommon procedure and of course I have a rare complication), etc. etc. I wish I could conduct interviews to choose someone new!

@Zach Martin, just a thought – have you tried abdominal compression? I have recently read that people who are not helped by leg compression alone might still be helped by leg up to abdomen, or just abdomen, compression. (Of course checking with your doctor first and starting with a gentle pressure.)

@misseb, I will embrace the snack! I think I have made progress on another front as well this week, so if I can get "breakfast" and "lunch" sorted out, I think I will be much better off.

The technique I tried yesterday seems to have worked today as well. I did not feel 100% better, but I was a lot less miserable than usual. I did feel a few different sensations around the old bod – nothing alarming or unpleasant, just signs that something was afoot. I am going to have to wait until I can see a specialist (have got two lined up) before I can do this every day. I will give details then. Not being mysterious, just want to get things confirmed before I start blabbing about it. It's on the standard list of OI/POTS interventions. In the meantime – yippee – sort of.

... but I don't want to tell anyone and jinx it! I was almost randomly doing an intervention and I think it helped and maybe gave a clue to my symptoms as well. But last time that happened with salt & fluid loading it only worked for one day. Ugh. I have to wait until tomorrow lunchtime or afternoon to try to repeat it. !!!!! Can't get to sleep. So I will half tell diinet.org to try to calm my brain 🙂

Thank you for the suggestions. I think feta cheese could be a good ingredient with the high salt as well.

@misseb, thank you for the suggestions. You have a lot of restrictions to make things harder. I am impressed that you can work when you are only having small snacks for most of the day.

So in the US, the PCP is your everyday doctor – I think equivalent to GP in Australia and UK? This role of physician is different to that (as defined in Australia and NZ). I had not heard of it before. I was referred to the physician by my GP. I get the feeling he is the specialist the local GPs refer people to when they don't know which specialist to choose (ideal for dysautonomia!). WHAT IS A GENERAL PHYSICIAN? General Physicians are highly trained specialists who provide a range of non-surgical health care to adult patients. They care for difficult, serious or unusual medical problems and continue to see the patient until these problems have resolved or stabilised. Much of their work takes place with hospitalised patients and most general physicians also see patients in their consulting rooms. Their broad range of expertise differentiates General Physicians from other specialists who limit their medical practice to problems involving only one body system or to a special area of medical knowledge. ROLES OF A GENERAL PHYSICIAN CONSULTANT General physicians are consultants who care for patients with special or difficult problems. General physicians only see patients who are referred to them by other doctors, usually by the patient's own general practitioner.

So, I have a small update: a while ago I saw a physician in the nearest large town. At that time I had not yet had the remission described above nor had I tried hydrocortisone. I managed to get another referral to see this chap again. Don't know if he will be able to make anything of the new info, but I am hoping to persuade him to try me with a one-off of IV fluids just as a test. P.S. I wasn't familiar with the role of physician until I was referred: https://www.imsanz.org.au/about-us/what-is-a-general-physician. You learn something new every day! P.P.S. After reading about physicians, I feel like maybe they could be good allies for dysautonomia diagnosis, given that it can cross specialties. I may use this as a selling point to get him to keep me on as a "pet project".

@jinglebean, thanks for letting me know about your experience. How frustrating. It's like being in the too-hard basket of the too-hard basket! There seems to be lots of good work being done to investigate dysautonomia and OI now, but I feel like it's all about 30 years behind other fields. Something measurable must be occurring when we do respond to an intervention or medication, but no-one can measure it yet. It seems like blood volume could be important – if only it could be measured as easily as blood pressure.

@Zach Martin, by the way, did your symptoms start suddenly or gradually? Mine started gradually, about 15 years ago, and used to only affect me for an hour or two in the morning, but have extended further and further into the day.

@Zach Martin, judging from reading forums, a reasonable number of people report feeling somewhat better later in the day. I actually feel 100% better (no symptoms at all) later in the day, which a smaller number of people report. I call it "Jekyll & Hyde syndrome" because it is like being two different people. Here's someone talking about a similar pattern: https://patient.info/forums/discuss/brainfog-and-fatigue-until-the-late-afternoon-or-evening-641793 I have seen a lessening of symptoms later in the day mentioned here and there by dysautonomia specialists in papers or conference talks, so they have noticed it too, but they didn't have an explanation. (By the way, I have not been diagnosed with POTS. I have OI symptoms and am waiting to see a dysautonomia specialist.)

@Zach Martin My main symptoms are weakness and brain fog. I only feel lightheaded if I push myself by standing in a queue or doing something strenuous, but I avoid that. I have some head pressure that takes the shape of a sinus headache (pressure above eyes and along cheekbones). I don't think I have tachycardia either. I am still working on geting diagnosed, so I can't offer any suggestions. I just wanted to sympathise at how much brain fog sucks. I am sorry you had to give up studying. I had to give up freelance work and basically ban myself from tackling anything mentally strenuous during the day. I can manage routine activities, but can't focus on anything more. Do your symptoms resolve later in the day? Mine generally get better by late evening, but there's not much to achieve from 11pm till bedtime in the country town where I live, apart from sending a few emails, getting in some exercise, and trying to research what is wrong with me.

Ah, thank you.