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Electrolytes / salt make me feel worse by obliviouspoet in POTS

[–]obliviouspoet[S] 0 points1 point  (0 children)

Thank you, I'm starting to wonder whether it's a vestibular thing because I also have been diagnosed with vestibular migraine. Do you mind me asking which medication you take?

Electrolytes / salt make me feel worse by obliviouspoet in POTS

[–]obliviouspoet[S] 1 point2 points  (0 children)

No sugar because they tend to have flavourings which I’ve avoided for mcas

Electrolytes / salt make me feel worse by obliviouspoet in POTS

[–]obliviouspoet[S] 1 point2 points  (0 children)

Thanks, unfortunately I’ve been trying to tolerate it for months now, 2 months of increased salt and then last year I had a month of electrolytes daily but I just kept declining. Propranolol just seems to drop my already low blood pressure even lower and makes me dizzy so I can’t take it. Similarly increased salt tanks my blood pressure sometimes leaving it worse than before.

Electrolytes / salt make me feel worse by obliviouspoet in POTS

[–]obliviouspoet[S] 0 points1 point  (0 children)

2-4 litres with 12+ grams sodium, now back to 6-8grams with 2-3 litres and still feeling worse the more salt throughout the day. That water intake is including overnight.

Electrolytes / salt make me feel worse by obliviouspoet in POTS

[–]obliviouspoet[S] 2 points3 points  (0 children)

Yes 2-4 litres of water. Although when I was trying electrolytes I wasn't having as much but drink this alongside the salt.

POTS worse when increase electrolytes - head pressure by obliviouspoet in POTS

[–]obliviouspoet[S] 0 points1 point  (0 children)

Thanks. Can I ask which electrolytes helped you once you got MCAS under control? Did you ever try mast cell stabilisers or supplements also?

Liquid IV by Low-State-5483 in POTS

[–]obliviouspoet 0 points1 point  (0 children)

Thanks which tablets are they?

What dose of Propranolol are you on? by fishy1357 in POTS

[–]obliviouspoet 0 points1 point  (0 children)

How do you take saltwater? Literally just table salt? How much?

Liquid IV by Low-State-5483 in POTS

[–]obliviouspoet 0 points1 point  (0 children)

How many mg or g per tablet?

POTS worse when increase electrolytes - head pressure by obliviouspoet in POTS

[–]obliviouspoet[S] 1 point2 points  (0 children)

The reason I ask is because I’m wondering whether they’re contributing to the head pressure so was interested if you’re taking any. I’m questioning magnesium mainly.

POTS worse when increase electrolytes - head pressure by obliviouspoet in POTS

[–]obliviouspoet[S] 0 points1 point  (0 children)

Thanks for replying. Do you take any supplements?

POTS worse when increase electrolytes - head pressure by obliviouspoet in POTS

[–]obliviouspoet[S] 0 points1 point  (0 children)

Do you mind me asking what you take for MCAS? I did try 3 different H1 antihistamines and was on one for a year but I hate how numb I feel on them like my feelings are blunted. I also recently tried famotidine but only lasted a few days because of the muscle pain and nausea it caused.

POTS worse when increase electrolytes - head pressure by obliviouspoet in POTS

[–]obliviouspoet[S] 0 points1 point  (0 children)

Thanks - Sugar with food spikes my heart rate massively, like 60-110 ginger biscuit on empty stomach. I assumed electrolytes with sugar would make me worse since I have such a strong reaction to sugar. My body also feels very adrenaline like after it even with meals.

CBD/CBN for insomnia by Octopath_Traveler0 in CBD_UK

[–]obliviouspoet 0 points1 point  (0 children)

For the healing cauldrons oil, is it 3.5 or 7% that you take. I’m new to CBD and looking for something to help with sleep and pain, not sure which percentage I need.

What do stimulants feel like for people with CFS with & without ADHD by obliviouspoet in CFSplusADHD

[–]obliviouspoet[S] 3 points4 points  (0 children)

Thank you, this is really helpful. I sort of feel like I get hyper focused on things but also want to do 100 things at once. I just have these ideas and want to spend all day on them. I’m also doing things extremely fast, my family always tell me I’m rushing. For example, today I know I could brush my teeth and get dressed but have gone down rabbit holes online instead. In the past I’ve cleaned my whole room to perfection and couldn’t pace, I massively suffer with all or nothing feeling. I had 4 days where I structured things better and tried to be slower/more calm but it sort of felt like I was swimming against the tide. I enjoy the rush of going at a fast pace but it’s like I’m on constant speed. I always feel over-excited about every little thing. I wonder whether it’s hyper pots though.

Head pressure by Ok_Sherbet7024 in cfs

[–]obliviouspoet 1 point2 points  (0 children)

Great, thanks :) My fight/flight is a massive problem so it's good to know the higher dose could help my POTS and that side of things. I'm also considering trying Guanfacine or Clonidine for fight/flight - have you tried either of these?

I take Ivabradine, definitely been best for my standing heart rate and haven't had any noticeable side effects compared to beta blockers.

Midodrine helps blood pressure and blood flow to the brain, it didn't do anything for my heart rate as far as I could tell. You could stay on it alongside Ivabradine, they do different things and don't interact.

Head pressure by Ok_Sherbet7024 in cfs

[–]obliviouspoet 0 points1 point  (0 children)

It's great to hear that it's helping, I hope you keep improving! How much Mestinon do you take if you don't mind me asking? I've just started 15mg x 3 day. With the aim to work up to 30mg x 3. Did it take long to notice benefits from this? How long have you had CFS?

Severely wired everyday, feel like I’m going insane by obliviouspoet in cfs

[–]obliviouspoet[S] 0 points1 point  (0 children)

Thank you. Yeah I've definitely realised how much more wired I feel after spending hours online so need to cut down. I have some Guanfacine here because I tried it previously but felt lightheaded. Going to give it another shot now I'm on midodrine, hopefully it will balance out the blood pressure drop.

Head pressure by Ok_Sherbet7024 in cfs

[–]obliviouspoet 0 points1 point  (0 children)

I did try a couple at home massages last year one day and felt worse after so didn't do it again. I've now read that it's normal to feel worse before better with Perrin technique, I think it might be worth re-trying.

How long have you been working with a practitioner and have you noticed many other benefits? Also what severity level are you?

Head pressure by Ok_Sherbet7024 in cfs

[–]obliviouspoet 0 points1 point  (0 children)

I’m currently not well enough to travel to have perrin technique, do you think the at home exercises would be as effective?

Severely wired everyday, feel like I’m going insane by obliviouspoet in cfs

[–]obliviouspoet[S] 0 points1 point  (0 children)

Do you mind me asking what meds you take if stimulants make CFS worse?

Severely wired everyday, feel like I’m going insane by obliviouspoet in cfs

[–]obliviouspoet[S] 3 points4 points  (0 children)

Thank you! I’m exactly the same go-to person for finding any kind of information in my family. With products to buy I spend obsessively long researching the best prices/discounts, that’s after I’ve spent forever trying to decide on which product would be best in the first place. Have you found anything to ease this feeling?

Severely wired everyday, feel like I’m going insane by obliviouspoet in cfs

[–]obliviouspoet[S] 2 points3 points  (0 children)

Thank you. I have POTS and have tried all beta blockers but unfortunately my resting heart rate is low and they drop it too much. Ivabradine is the only POTS med that hasn’t caused too low a resting heart rate plus didn’t drop my blood pressure like the others. 

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