Sarah Tee

Ah, thank you.

In the end, I wasn't able to spend the day in bed so I didn't get to finish my experiment. I hope I can try again another day. It might seem bad to spend the day in bed when I don't have to, and other people have no choice, but I am still unsure whether my symptoms are related to being upright or simply to the time of day or eating (can't eliminate those!). I spend a lot of time sitting on the couch feeling sorry for myself too, so I can sympathise. Sorry that you have to stay in bed.

Just a question related to something mentioned in this abstract – can you be tested for cerebral hypoperfusion? I mean, as a normal medical test ordered by your doctor/specialist, not as part of research.

Oh dear. At least he tries, I guess. Staff changes can be difficult. My GP retired and I haven't managed to establish a rapport with any of the other doctors at the practice.

That is great that you have someone "batting for you". I will try to be patient until August ...

Thanks for the encouraging words. I will report back in August!

Thanks, @Pistol. There are positive comments about the specialist on this message board, so I am hopeful. I just have to somehow wait calmly until August. Having a small renovation done on house next week that should make life a bit more comfortable for me in the meantime.

G'day David Smith, The idea of raising the bed head is to reduce urine output at night, and hence keep fluid levels up. Some people find it doesn't agree with them for the reason you mention.

@yogini, all good points. I am in the dark at the moment as to what is wrong with me ... I am waiting to see a dysautonomia specialist (cardiologist), but if he rules out dysautonomia I don't know what I will do. I am petrified that no specialty will "own" me if I don't fit anywhere, and I'll never get any treatment for my OI/presyncope/fatigue symptoms. I can only hope that the dysautonomia specialist will refer me on, not just send me away.

It's a bit tough, but luckily my symptoms only seem to be affected by breakfast and lunch, with breakfast being the main influence. At dinner time it doesn't seem to matter what I eat, symptoms always start to subside around 8pm with no post-dinner slump. (Not that I go crazy but I can have rice or fruit and it is fine.) I hadn't thought of avocado, but I think that could work. Thanks for the suggestion! I will stock up on avos tomorrow.

Oh, I hadn't thought of protein bars. Will definitely give them a try. I could bake and freeze some muffins too.

Oh, that is great that it helps. And warm hands and feet is a nice bonus!

@John316, have you and your doctor/specialist considered the Undiagnosed Diseases Network? https://undiagnosed.hms.harvard.edu/

@RecipeForDisaster, do you find the IV fluids helpful, despite the inconvenience?

@yogini, funnily enough, my symptoms are as regular as clockwork (unlike many people here). They never get worse with stress, exertion on previous day, other illness. Weird, I know! I will try checking my blood pressure and heart rate when my symptoms are at their worst during the day and comparing it to when I feel better (late evening). So far BP and HR have been in normal range and consistent with what seems normal for me, but I haven't compared symptomatic times with asymptomatic times. I really wish it were possible to check blood volume as easily as blood pressure. (I suspect my problem is blood volume.)

I have been trying to eat a low-carbohydrate breakfast (or mini-breakfasts spread out as snacks) because my symptoms seem to start after eating in the morning. But I'm struggling as to what to eat because I have a some restrictions. First, I feel pretty blah in the morning, so I need something unchallenging. Second, I can't eat egg in any quantity. Third, I can only eat medium or low fibre foods. (This is all because of some bowel surgery that has gone astray, not dysautonomia.) Fourth, I'm vegetarian (but even if I wasn't, I don't think I could face meaty or fishy things for breakfast). What do you eat for breakfast and snacks if you have to watch your diet for dysautonomia reasons? My best effort so far was grilled tomatoes with cheese on top. It was a little hard to face but I think it might have helped.

@brainchild, thanks for responding. Your football analogy definitely makes sense. I am hoping that when I see the specialist in August there will be something measurable, although I am trying to prepare myself for the outcome that he will be just as much in the dark as I am. If it was a straightforward case of low blood volume, it seems the salt and fluid would work every time, so there must be further wonkiness, as you say. Oh well, fingers crossed!

Thanks, @yogini. I thought I had it all worked out that it was low blood volume ... but now I don't know! I figured I might as well try a few countermeasures just in case. I have an appointment with the dysautonomia specialist in August so that gives me six months to experiment.

Today I am doing an experiment – reclining or lying down for as much of the day as possible to see if it affects my symptoms. I'm only getting up to go to the loo and to eat (keeping legs elevated while sitting at kitchen table). I can't lie completely flat because then I would fall asleep and I don't want to disrupt my sleep patterns (or add sleeping as another factor) so I am slightly propped up on a pillow. Can't knit though. What do you do to pass the time when you have to rest? Cheers, Sarah

@RecipeForDisaster, thank you for your kind words. I am sorry to hear you might have another condition adding to your situation. I will have a look at compression stockings. I had not tried them so far because I don't have any obvious signs of pooling in my legs (not that that rules it out), but I will ask my doctor (GP/PCP). I am feeling so confused at the moment because my fatigue/presyncope symptoms don't seem to correspond to orthostatic intolerance – they come on 30 mins to an hour after I get up, and disappear later in the day (currently about 10pm, but previously much earlier). Anyway, while I wait to see the dysautonomia/POTS specialist, I want to work through everything I can in terms of countermeasures.

Thanks, @dancer65. I have added strength training for abdominals to my training routine. At the moment I can exercise 3–4 evenings per week so I will try to make the most of it.

I'm sorry to hear that, @RecipeForDisaster. I sometimes feel a bit bad about posting here because my symptoms aren't as serious as most other people. For instance, I don't faint or have to stay in bed. The problem is that I have two other medical issues (unconnected). I used to manage okay when the dysautonomia only affected me for an hour or so in the morning, but now that it runs all day I am pretty much housebound. The other two medical conditions won't budge, so I am hoping that I can do something to reduce the dysautonomia.

Yes, I often feel completely better by evening. I hate going to bed because the next day it all starts again.

Thank you @Pistol and @RecipeForDisaster, that's great. After finding that salt/fluid loading worked once and then hasn't really worked again to the same extent, I am waiting to see a specialist. In the meantime I am going to try some of these strategies and see what happens. I guess I am lucky in that my symptoms often clear up in the evening around 10–11pm. Not every night but a few nights a week, so I can exercise then. Unfortunately, apart from keeping up my fitness levels a bit, it doesn't make any difference when symptoms come back the next day. So I figured I'd try some countermeasure exercises/manouvres in the morning and also look at raising my bed.

I can't seem to find the information I read on countermeasues a while ago. Can anyone point me to a good reference, preferably with some instructions? I'm talking about muscle tensing, leg crossing, etc. And I would be glad to hear what countermeasures you use. If anyone raises their bed, I wonder by how much, and can you still sleep on your side? Thanks, Sarah