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KaciCrochets

Electrolyte drinks?

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I've discovered that drinking Gatorade before I get ready for bed cuts way down or eliminates the spinal shocks that keep me from falling asleep. Last night I forgot to drink some and oh boy! My question is, are there better alternatives to Gatorade? I don't like the dyes and I am not sure if I actually need the sugar. I do not want to make my own so no recipes, please.

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Hi Kaci,  Wondering the same, I've read that Gatorade Zero is the best, but I think I was meant to see your post today, as had a very bad night.  I see you have hyperPOTS, I believe I have the same, and I am wondering what you mean by "spinal shocks?"  Are they like myoclonic jerks?  I am glad for the Gatorade tip at night.  Can I ask if you (or anyone), especially those with neuropathy, wake up with internal shaking, anxiety, tachycardia both lying in bed and especially upon getting up to use the BR, and severe burning/paresthesias in arms and legs, and severe chills.    I get this in "attack,s," not every night, and it will last throughout most of the following day.   Was so bad last night that honestly think I must be sick, or there is something else going on.   If anyone else has these attacks, would appreciate knowing.  TY.

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1 hour ago, Amyschi said:

Hi Kaci,  Wondering the same, I've read that Gatorade Zero is the best, but I think I was meant to see your post today, as had a very bad night.  I see you have hyperPOTS, I believe I have the same, and I am wondering what you mean by "spinal shocks?"  Are they like myoclonic jerks?  I am glad for the Gatorade tip at night.  Can I ask if you (or anyone), especially those with neuropathy, wake up with internal shaking, anxiety, tachycardia both lying in bed and especially upon getting up to use the BR, and severe burning/paresthesias in arms and legs, and severe chills.    I get this in "attack,s," not every night, and it will last throughout most of the following day.   Was so bad last night that honestly think I must be sick, or there is something else going on.   If anyone else has these attacks, would appreciate knowing.  TY.

By shocks, I mean just that - electric shocks. Often they will travel and cause a muscle spasm or myoclonic jerk, but not always. The shocks originate sometimes in the back of my skull and sometimes elsewhere down my spine.

I don't get attacks quite like you describe, but I do get adrenaline rushes sometimes that can mess me up for days. 

43 minutes ago, p8d said:

I like Trioral.  No dyes, extra stuff.

Thanks, p8d! 

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I like trioral also. It has sodium and potassium as well as some glucose. As I understand it, the formula was designed for rehydration in the face of illness (its a WHO formula, so think cholera). The glucose is there because sodium uptake is via active transport which requires energy. I haven’t tried any other electrolyte or sodium drinks so can’t compare. 

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Do you all like Trioral, nuun, or Liqiud IV the best? 

Also, where is the best / least expensive place to but them? (Being healthy with POTS can be expensive!)

Edited by C8ydid
Added another question

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I have only tried Trioral, so cannot compare. I purchase via Amazon and since I know I’ll use them, I buy the 100 count box for something around $40. That makes it 40 cents per 1 liter; I tend to drink 2-4/day. 

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On 11/2/2019 at 11:05 AM, Amyschi said:

 Can I ask if you (or anyone), especially those with neuropathy, wake up with internal shaking, anxiety, tachycardia both lying in bed and especially upon getting up to use the BR, and severe burning/paresthesias in arms and legs, and severe chills.    I get this in "attack,s," not every night, and it will last throughout most of the following day.   Was so bad last night that honestly think I must be sick, or there is something else going on.   If anyone else has these attacks, would appreciate knowing.  TY.

I used to get what you're maybe describing, periodically and especially after very stressful days. I used to think they were partial seizures since I was on medicine for nocturnal grand mal seizures (so I thought they were "breakthrough" seizures). I would wake up in the middle of the night, feel a heat flash and then slowly the onset of all-over body shaking. I can't remember all of the symptoms that went into the buildup to the all-body seizures but definitely the tachycardia, until everything including my teeth were rattling. I wish I'd had my husband film it so that I could've shown it to my doctor at the time. Anyway, a doc prescribed xanax for me to take at the onset...not sure if it helped because it still took about 10 min to kick in but I was able to then go to sleep. BUT having said that, I was also taking cortef right before bed, not knowing I wasn't supposed to take it so close to bedtime. Once I stopped doing that-started taking it at dinner and then later switched to prednisone last taken at dinner), those episodes stopped!  I don't know how this can help you but it was my experience.  Best wishes!

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I'm a huge fan of Propel Zero Calories packets!  At my worst with daytime symptoms with dysautonomia, I started having intense shaking spells after working out at the gym. I started adding 2 packets (so 2x) to a bottle of water, and I was just fine! I once decided to test the hypothesis that I needed to do that and drank only water during a workout....a few minutes into the drive home, I had to pull over because I was shaking so badly it wasn't safe to have the car in motion and my dh had to come get me.  I used to also drink one packet with water during the day-until it started making me feel feverish. I guess I (we) are very sensitive-needing it when we do, and then it's too much when we don't need it. I also use it during very hot days when I'm working in the garden all day (because-whoo-postural hypotension, hello!). I buy them in bulk from Amazon.  Edit to add I am too sensitive to sugar so I need ones without sugar added.

Edited by Friedbrain
to add info about sugar content

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On 11/16/2019 at 12:55 PM, Friedbrain said:

I used to get what you're maybe describing, periodically and especially after very stressful days. I used to think they were partial seizures since I was on medicine for nocturnal grand mal seizures (so I thought they were "breakthrough" seizures). I would wake up in the middle of the night, feel a heat flash and then slowly the onset of all-over body shaking. I can't remember all of the symptoms that went into the buildup to the all-body seizures but definitely the tachycardia, until everything including my teeth were rattling. I wish I'd had my husband film it so that I could've shown it to my doctor at the time. Anyway, a doc prescribed xanax for me to take at the onset...not sure if it helped because it still took about 10 min to kick in but I was able to then go to sleep. BUT having said that, I was also taking cortef right before bed, not knowing I wasn't supposed to take it so close to bedtime. Once I stopped doing that-started taking it at dinner and then later switched to prednisone last taken at dinner), those episodes stopped!  I don't know how this can help you but it was my experience.  Best wishes!

Thanks so much.  Interesting.   So glad you are doing better with this.  Can I ask why you are taking the prednisone? 

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On 11/17/2019 at 1:53 PM, Amyschi said:

Thanks so much.  Interesting.   So glad you are doing better with this.  Can I ask why you are taking the prednisone? 

After my grand mal seizures and while on anti-seizure medication, I was still experiencing a lot of symptoms including severe fatigue and postural hypotension. An endo did some testing and I had abnormally low levels of some hormones, which led to testing my cortisol level and HPA responsiveness to challenge. While borderline, this nice endo prescribed cortef to see how I would respond and I *did*! I was on that for many years but, after moving, a new endo switched me to prednisone. This was an improvement because I was still experiencing some symptoms during stressful periods. Newer endos are not convinced I need to be on pred for adrenal insufficiency BUT they also agree that it helps me (tapering has caused severe symptoms), and maybe from the anti-inflammatory properties.  Anyway, they don't mess with it anymore and I work to stay stable :)

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@KaciCrochets  Wegmans Pure Coconut water has always helped me. It's very high in potassium and has magnesium, phosphorus, calcium, and manganese in it. There's only 115 mg of sodium in it however so you'll probably need to get that elsewhere. If I drink too much Gatorade it usually makes me feel sick after a while. I think it has to do with the dyes and synthetic sugar. At least Coconut water doesn't have that and has natural sugar so that's a plus.  

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