Sarah Tee

What would people say is a low dose for fludrocortisone when starting it?

I hope I can try IV saline or LR even just once to see whether it helps. I don't have seizures or faint, so I can see it isn't medically necessary for me given the risks that have to be weighed up. But if it did help, I think that fact could be a sort of diagnostic clue to point out that yes, I do respond to IV volume expansion and therefore ... [insert medical revelation here]. That is very interesting about LR sticking around for longer, @Pistol. I did not know about that.

Thanks again to everyone who has commented. I have some positive news. I saw the new GP today and he was very helpful. He is going to sort out some help for me and even mentioned organising a case conference with my endo, the cardio who visits the practice, and the specialist I am waiting for (!). He said he didn't know a lot about chronic OI or dysautonomia, but he would do some research and make sure I had support. I felt much better and wandered out in a bit of a daze because he had been so helpful.

That is terrible that you have to wait so long. Do you get any help/support from anyone medical in the meantime? My total wait is six months, which I thought was great back in Feb when they told me, as I think he is the only specialist listed for Australia right now on the list here. But I've been banging on about OI for two years, and I've been asking about the problem for ten years, so in one way it will be a decade-long wait. The problem is that my overall health is going downhill rapidly, even since February. I just feel like I need help now, more than I ever have before.

Thanks, @Delta. Sorry you had some bad experiences. It sounds like you have a good person to rely on in your neurologist. You are right, any supportive medical person would be good. Thus far the best person has been my endocrinologist. She is fantastic and she is the one who referred me to the dysautonomia specialist. I kept hoping that I would have an endocrine cause so that she could treat me, but nothing showed up. Am seeing new GP/PCP on Tuesday, so fingers crossed that he understands or at least sends me to a cardio.

@CallieAndToby22, thanks for the suggestion about the GP/PCP ordering IV fluids. I am seeing a new GP on Tuesday who has worked in America and I am hoping he will be more switched on. I will see if he is open to the idea. If it helps, having it even once a week would be worthwhile. I have contemplated faking dehydration because I really want to know if IV fluids help, even if I can't take them long term. But honesty is the best policy ... so I will persevere going through the channels. Sorry you had so many unhelpful experiences.

Thanks @Pistol. I've been through all the interventions you can do on your own (except bed raising which isn't logistically possible ATM). That's why I feel like I need more help. Even moral support would be good. I really miss my old doctor (who retired). She wasn't perfect but she knew me and always took the time to talk over my concerns. I mentioned POTS to the current (now rejected) doctor because it tends to get recognition – I seem to have chronic OI with abdominal pooling after meals. Anyway, I'm seeing a different GP (PCP) next week. Apparently he worked for many years in America so I am hopeful he knows about dysautonomia etc. I feel like a cardiologist could test my blood volume, maybe prescribe temporary or one-off IV fluids (to see if it helps), or even try me on a low dose of florinef. Anything that might improve things slightly while I wait for the expert. Thanks for your kind words. I will try to persevere. P.S. I do leg and other strength exercises every evening, plus stair climbing (two-storey house). As I can no longer get out during the day for aerobic exercise, this is my sole exercise really. My legs are starting to look gymnast like!

Thanks everyone for your thoughts. I should have made it clearer: An appt with a local cardiologist would not in any way affect my visit to the specialist in August, and I would not have to follow anything the local one said or prescribed. I would not even have to tell the specialist that I had consulted another cardiologist. So when I asked "is any cardiologist better than nothing", I meant for the next three months. Brain fog. I have no medical support at all with the OI right now. The two doctors (GPs/PCPs) who knew my situation have gone, and the new doctor knows nothing about me or OI. Last week I told him I was feeling worse every day and that I desperately needed help. He said he would get back to me but hasn't. I am on the waiting list for several doctors recommended to me, but none are taking new patients at the moment.

I am struggling to wait out the final 3.5 months to my appt with a dysautonomia specialist (cardiologist), but I feel my health is deteriorating and I need help now. I suggested to my doctor (GP/PCP) that I should see a cardiologist locally to provide some support while I wait for my specialist's appt. For example, there is a cardiologist who visits to see patients once a month at the GP surgery. The GP said that a cardiologist who is not a specialist in POTS/chronic OI would not be able to help me. I disagree. Wouldn't any cardiologist be familiar with volume depletion, OI symptoms, etc.? Even if they only know about them in an acute setting, surely they know more than a non-cardiologist. The GP also said that no-one in the region would know anything about POTS/OI, but I found out that there is a cardiology practice in the nearby large town that has a tilt table and diagnoses fainting and dizziness disorders. Although POTS isn't mentioned, it seems like the cardiologists there would know about it. https://www.cvcvictoria.com.au/service/tilt-table-testing-ttt Should I keep pushing? I am starting to feel like the attitude is "Ignore chronic conditions and let people get worse until they end up in hospital and then maybe someone else can do something". In three months, maybe I won't be able to get out of bed, or maybe I'll catch a nasty bug because I'm so run down.

@MTRJ75, that is such great news. Thank goodness you got a psychiatrist that knew their stuff! I am so glad you will get some financial help, and I am also hopeful that all kinds of doctors are getting dysautonomia, POTS, anxiety and somatic illnesses clear in their minds so that anyone suffering from any of these can get the right diagnosis and help.

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.