Blackouts and DLA

munchings-n-crunchings

Hi GlasweJen,

My 14 year old daughter was told to increase her salt and fluid intake due to Vasovagal episodes.
How do you increase your salt, without having too much? We don't eat processed foods, and the only time we get salt out, is for chips and roast spuds!
I have no perception about quantities to try and include in her diet.

Regards
Munchie

GlasweJen

Hi Munchie, there's 2 ways of going about it. You can ask your doctor to prescribe slow release salt tablets which are designed to release the salt slowly into the blood stream so that you don't get a rebound high blood pressure. The other way is putting salt into potatos, pasta, rice etc when cooking then topping up when it's on the plate but if your daughters like me then it tastes disgusting! Another way (my method) is to drink hypertonic drinks, you can get the powders in pharmacies and it's cheaper than buying the premade ones and they taste alright, you can even pick the flavour. I drink these instead of water as water dilutes the salt that's already in your system. If you read the boxes and go for the one with least sugar that works out best, I use maximuscle viper but only buy it when it's on offer.

Jo_King

286 seconds! Very impressive! I lasted ages - 23 minutes - but I sometimes blackout after a couple of minutes upright, and sometimes I can go half an hour and be fine.

The cardiologist didn't mention high salt (I haven't added salt to my food in years - apart from chips or boiled eggs!), or compression stockings. I think my blood pressure is already quite high, though I don't know how that influences things. TBH, I was a bit confused by the meeting - at one point it was orthostatic hypotension, the next it was neurally mediated hypotension, and then something else I don't remember. And there was also the possibility of more tests floating around. I was there on my own, and too flummoxed to write it all down! I'm waiting until the letter gets to my GP, and then I'll sit down and talk it through with him. I'm also waiting for the midodrine to arrive into the hospital pharmacy!

Thanks for your replies GlasweJen. I'm struggling to get my head around it all, and your replies have helped!

GlasweJen

Hi Jo,
you'll get used to the terminology, in this field there's lots of different words for the same/very similar thing. Some cardios are very vague and some GPs are clueless. You should ask if you can have a cardiac nurse who you can talk this through with, obviously they can't prescribe but they are invaluble at giving you up to date info.

Failing that there is a support group called STARS Syncope Trust and Reflex Anoxic Seizures who have information leaflets on the conditions and a helpline for people who are struggling.

darknesshayz

I suffer from Blackouts too, gave them at least loads of paper detailing about them, and they say that I only need care for the hour! :S..... I can have them at least 12 times a day, and they can last a long time, I nearly been hit by a car a few times, yet they say I dont need help while having them.

Jo_King

GlasweJen, don't know if you're still around. I was wondering, how do you feel after a blackout? I'm just wondering, because I blacked out this morning, and I've been feeling wrecked since - I have fatigue because of the FMS, but it seems much worse after a blackout, or pre-blackout. Just wondering if it's because of the blackout, or if it's the blackout and the FMS working in harmony!

I feel like a bit of a fraud, feeling so poorly, when all that's happening is a brief blackout, but it really does seem to cause my whole body to go into rebellion. Am I over-reacting, or does this happen to others?

GlasweJen

I feel awful, it's like someone has reached in and took my batteries out. I just want to lie down and sleep and often that's all I can do for about an hour post black out. I'm disoriented, confused, feel like my arms and legs are lead lined. I find that drinking sweet tea helps as do salt and vinegar crisps. Best thing to do is get yourself somewhere safe and padded (like a bed) and sleep it off.

Jo_King

HUGE thank you. It's such a relief to hear! I thought I was overdramatising the thing.

I really need some space to work out what's happening, but work's so busy at the moment, I haven't even dared to start on the midodrine, because I couldn't cope with the side effects alongside everything else.

I'm worried about work. I love work, but I'm already on reduced hours and struggling because of the FMS, and with the blackouts, which happen most days, I'm having several hours of 'wipe out' where I can't function. I'm sleeping 10-11 hours (every hour I'm not working, at the moment), and crying a lot, and struggling to think coherently. My employer is already frustrated by the FMS. I don't think I dare mention NMH as well...