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CarolS

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Everything posted by CarolS

  1. Not sure what country you're in, but if possible, it would be best to try to get to an autonomic specialist. Someone who has a thorough understanding of what's going on with you.
  2. You probably know this already, but if you take something like beta blockers to take down the tachycardia but don't increase blood volume and/or vasoconstriction, you'll probably feel worse. Have you asked about midodrine?
  3. The horse chestnut works as a kind of herbal Midodrine. It constricts the blood vessels which helps the blood get up to the heart and head easier. For some people, just increasing blood volume with the salt and fluids achieves this and I think that's why the doctor didn't prescribe midodrine right away. He wanted to see if my daughter's POTS would be corrected just by increasing the blood volume and then forcing down the heart rate with the Ivabradine. I could see the fluids and salt weren't enough after about a week, so added the horse chestnut in. I've only tried the specific brand and type mentioned above because it's the aescin in the horse chestnut you need and that product has a particularly high percentage of this. It's also time release, which is good. I was surprised at how well it worked, to be honest. Each person is so different, though. You could have a totally different reaction. Butcher's Broom is another, even more commonly used, herb for vasoconstriction. It didn't work as well and gave my daughter a strange kind of headache the two times she tried it. The licorice was the first thing we tried where we could see a noticeable difference. Way before the POTS diagnosis. If you can get your hands on some pure powdered root it's potentially a good thing to try in conjunction with the fluids as it helps in multiple ways. Just keep an eye on your blood pressure while taking. I'd also take in the morning rather than evening. I'm in the UK and I think Ivabradine was approved here some time before it was approved in the US. Not sure about Canada. Doctors aren't all necessary aware of it. I hate sitting in the doctor's office and trying to cram my explanation of the 75 different things going wrong with my daughter, most of which the GP has no clue about, into a 10 minute appointment. My strategy now is to write a letter (they won't accept emails here) very clearly outlining the one specific thing I want help with at the time. I include research evidence and exactly why I want what I want and just get the doc to call me when he's digested what I've written. This has worked so much better than sitting in an appointment getting overly emotional. Similar experience with GP refusing to do HR test. I told the GP I'd been measuring her heart rate and it looks like she has POTS. He was willing to just accept what I was telling him and not bother to do his own HR readings. I basically forced him to do readings because I wanted some external measurement verifying there was something wrong here. I mean, I'm not the doctor! I'm using a phone app to do measurements! After a year of going to doctors for the ME/CFS where every symptom is just something you're telling them, I was not going to allow the doc not to do his own measurements on this. Then, of course, you keep your fingers crossed this won't be the ONE day you don't have the tachycardia! Things got quite heated in that appointment, but I managed to get him to do the measurements. Thankfully (you know what I mean) her heart rate went way above the 40 increase required. Your doctor does sound really unsupportive and awful. I will say that you might find in the long run not seeing a cardiologist and having to wait for the specialist may be the best thing. GP wanted to send daughter to paediatric cardio first, before we got to see specialist. I was worried about this because I've read so many stories here and elsewhere of cardios who don't know about POTS and basically find nothing wrong. And then you're one step further back because your records now show a cardiologist has said you're fine. After being on a waiting list to see the cardio for ages, I eventually rang up the specialist myself and found that they would be happy to see my daughter with a referral straight from the GP, so I --surprise surprise--wrote a detailed letter and got GP to agree to the referral. Daughter was diagnosed with POTS right away and got the Ivabradine.
  4. My daughter doesn't have the abdominal issues, but other than that her symptoms are pretty similar to yours. She's 16. We're in the UK and managed to get referred to one of the doctors listed on the POTS UK site. Have you looked on the physicians list here to see if there's anyone close to you that you could perhaps get a referral to? We've been to see the specialist once and she was prescribed Ivabradine and slow release salt tablets (600mg each) and told to take 4 salt tabs/day plus salt food as much as possible and drink at least 2L water/day. She'd been doing the salt and water thing before this time, but it was pretty erratic. Doctor said you have to be really consistent and that the blood volume increase won't really kick in until at least a week of consistent salt and water. The Ivabradine is better than beta blockers if you tend to have normal/low blood pressure. It only lowers heart rate and has very minimal side effects. Doctor said to do the salt+water protocol for a week then start on a low dose of Ivabradine and work up to full dosage. In addition, she also takes 1tsp liquorice root powder dissolved in a big glass of coconut milk with 1/8tsp salt first thing in the morning. The licorice is another way to increase the blood volume. She's been taking this for quite a while and we really notice the difference when she takes a break from it. (Only good if you don't have high blood pressure, though) Once she was on the Ivabradine things actually seemed to be a bit worse for a while. It brings down the heart rate, but with POTS the heart is pumping like crazy for a reason, so without something else to vasoconstrict and keep the blood moving up to heart and head, things were actually worse. The doctor had talked about midodrine as a possibility, but had not prescribed it. I decided to look for an herbal alternative and decided to try horse chestnut tablets. I bought the Swanson Superior Herbs Timed release Horse Chestnut 22% Aescin and she takes one in the am and one in the pm. This seemed to be the missing link and once she added this, the improvement was fantastic. She's been on this protocol for about 2 months now and she is better than she has been for a long time. She has ME, as well, but bringing down the POTS symptoms has helped overall. Less PEM, less fatigue. A lot less headache and chest pain. She's nowhere near back to normal functioning, but this is as good as she's been for a long time.
  5. Thanks for the update and really sorry to hear it was useless. Might still give it a try with my daughter. If you learn anything around here it's how differently we each react to stuff. Hoping to find something gentler like this before resorting to midodrine. She's currently on horsechestnut, licorice, salt and water (of course!) and ivabradine. Doesn't seem to be enough though.
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