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585d
how does everyone better manage their Dysautonomia symptoms on the daily? my main ones are heat and exercise intolerance and dizziness… they’ve gotten worse recently and i want to find more ways to accommodate myself at least at home.
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Iron, Vitamin B12 & Folic Acid
Midodrine
Sodium Chloride
Myalgic Encephalomyelitis
Dizziness
Chronic Pain
Disorder of Autonomic Nervous System
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580d
@Art_therapy thank u i definitely will
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For my heat issues i try to take cool showers or baths. (The cool part being important because i don’t want to make myself too cold or ill start shivering and wear myself out that way). If you cant take a shower or bath then try running your forearms and face/neck under cold water. I usually find some relief that way. I hope this helps ❤️
583d
I see on your profile that you add salt to your food. Have you ever tried taking straight up salt tablets, instead? My cardiologist recommended that I start on three 1g sodium chloride tablets a day to get a more consistent dosage and that has very surprisingly helped me. I wouldn't say I feel better, but I feel different for sure in a more managable way. Less debilitating fatigue with intense dizziness and more average tiredness with moderate dizziness. So that might be something to ask your doctor about I've also had success with midodrine, if you haven't tried that already. Some people get side effects they can't tolerate but it's helped me and a lot of others. Taking it gives me more stamina to where I can actually exercise on my recumbent bike every once and while without keeling over or almost passing out lol, I don't think I could function day to day without it I haven't found a solution for heat intolerance yet aside from "don't be in the heat" but rechargable neck fans certainly help and I've heard some praise for microfiber towels as well. Staying hydrated, of course, helps with everything. And taking frequent breaks. Lying down for 15 minutes every few hours helps me
@Lunarr i’ll definitely try to look into the salt tabs and if i’m able to do that. and it’s hard for me with blood pressure meds is that my bp is so random. my dr considered giving me one for it but he didn’t think it would be beneficial. i’m desperate for things to work but i don’t feel it’s worth it to deal with more doctors.
@tatertot731 Yeah if your BP is high a lot I would for sure message your doc over the patient portal to ask about the salt tablets before taking them just to check and ask how many you should take a day. You can buy 300 for $14 online which is what I did so they're pretty reasonably priced (esp considering my pharmacy charged me the same amount for 90). They're fairly large, round and maybe half an inch across, you take them with lots of water like a pill or you can dissolve it but quite honestly chugging salt water sounds awful lol I understand not wanting to shuffle through more doctors, it's exhausting and expensive. If I were you I'd start with asking your current doc about the sodium chloride tabs and if those don't help after a few months bring up the idea of other treatment options he could offer you, since clearly whatever you're doing now isn't working anymore. Maybe even get a second opinion, my old cardiologist essentially gave up on me and tossed me back to my primary but my new one is actually helping me so far. Worsening symptoms are tough, I've been going though a similar decline these last few months due to med dosage adjustments, so I feel you and hope things get better soon 😊
☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
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