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CarolS

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  1. Licorice has very similar actions to florinef but without the negative side effects. A tsp pure ground licorice root dissolved in a cup of milk or plant milk every morning along with a little (1/8tsp, or so) salt has worked really well for my daughter. Not good if you have high bp but otherwise it might be worth a try if approved by your doctor?
  2. I wonder if you've been able to give yourself any very prolonged periods of rest. I took my daughter out of school for a year and she spent most of that time in bed. If there was any chance of spontaneous healing I would think rest would be absolutely essential. Having said that, there's a huge chance that she never had a CSF leak. Like you, we're in the UK, so testing is something you have to beg for and I decided to go in different directions. I think her clarinet is going to stay packed away indefinitely, though!
  3. @Charlotte1 I wonder what made you relapse? I feel so nervous about my daughter relapsing. This thing is so mysterious. Just to clarify, my daughter didn't relapse using Diamox. She'd been gradually improving in health, which meant her immune system was getting back to normal. That allowed her to catch her first cold in 2 years. The cold caused a massive relapse and the Diamox popped her back out of it. After 4 days of Diamox it didn't have any further benefits for her. She hasn't needed it since. I feel like it's actually most interesting diagnostically. Nobody would agree that she may have i
  4. Congratulations @bombsh3ll! What a relief to know there is treatment out there and to finally know what you're treating. Keep at it. The NHS should be for everyone, not just people with the "right" illnesses. My daughter's acute phase of ME and POTS started after a weekend wind orchestra residential where she played clarinet for hours and hours. She was already under the weather with an upper respiratory infection, had her period and then subjected herself to what is essentially hours and hours of valsalva. I've been wondering for a while if this might have caused a leak, but then she has
  5. Hi @Charlotte1 I don't come on here much anymore either, but I happened to pop on tonight and saw your post. So much has changed since I posted on this thread back in May. Once I was able to get daughter out of her bad crash by using Diamox, she started improving again. Improvement has kept on going and now she is actually back in full time education with almost no signs of ME. She still has POTS, but it is really well controlled by 7.5 mg Ivabradine twice a day, licorice root powder+salt dissolved in coconut or other plant milk every morning, Swanson timed release 22%aescin horse chestnut tab
  6. When all the most recent POTS research seems to be showing structural or autoimmune causes, a company where half the staff are psychologists doesn't fill me with much confidence.
  7. I used Swanson 90% Honokiol magnolia bark. I found it helped me get to sleep in quite a nice gentle way. It stopped working after only a couple nights, though. IIf I wait a long time between uses I can get it to give me another night or two of effectiveness, I don't have dysautonomia. My daughter with POTS and ME tried it, as she has very stubborn insomnia, and it did absolutely nothing for her.
  8. This sounds like Post-Exertional Malaise (PEM) which is the hallmark symptom of ME/CFS. From Wikipedia: "PEM can be described as "a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity."
  9. @Conrad_hemsley Glad you're finding some of this helpful. I have no idea if the Perrin Technique osteopathy (the lymph drainage thing) actually relieved IH because my daughter's intracranial pressure has never been measured. I just know that over the course of a year of the therapy she has gradually improved (with some dips here and there) across the board, including OI/PoTS. As the therapy is aimed at removing lymphatic blockage, which would reduce IP, I'm assuming it did that to some extent. This is a really good article about the Perrin Technique. It was what convinced me to look int
  10. Wow. So your daughter actually has an IH diagnosis and her doctor agrees this is a cause of her POTS? The two doctors we've spoken to have said it would more likely be hypoperfusion and wouldn't entertain my notion that IH is involved. Must be so hard for your daughter to have to have lumbar punctures therapeutically, but also good to know you have a solution when things get really bad. If you don't mind me asking, how long does the pressure relief last after a puncture? Have they considered putting in some kind of a stent to keep the pressure down?
  11. Interesting @DizzyGirls. Completely opposite to how it initially effected my daughter. Also, the very frequent urination only lasted for the first two doses. After that she went back to her normal fairly frequent urination. I also gave the doses with sodium bicarbonate, so that might have mitigated some of the salt wasting effect. She stopped taking the Diamox two days ago and things haven't dropped back to anywhere near as bad as they were prior to her first dose. The pressure release seems to have been important and positive. In this case, anyway, where the POTS flare was brought on b
  12. Thank you for responding! I don't think the action I observed was just at the blood level. There seemed to be a physical relief of pressure in the head and neck. With the second dose we both heard her neck "crack" about ten minutes after she took it and with both the first two doses she could feel things moving--pressure releasing and structural shifting. After the first two doses the effect was less dramatic and the extreme urination also stopped. I'm a little confused about the CO2 thing. When researching this I read a lot of Diana Driscoll's stuff and also a lot of stuff on the EDS fo
  13. Interested to hear Diamox experiences. A little background (sorry for the length of this)... My 16 year-old daughter has been ill for about 2 years now. Diagnosed with ME/CFS and POTS. She has the usual host of autonomic symptoms--poor temperature regulation, flushing/sweating issues, intermittent brain fog. etc in addition to constant headache and a lot of spinal pain. The only thing she hasn't had to deal with are digestive issues for some reason. Headache and TMJ pain were two of her first symptoms. She's currently on Ivabradine and standardised horse chestnut tablets + the usual salt
  14. Where are you in the UK? Have you looked at the list of doctors on the POTS UK site? My daughter has seen Dr. Jamie Fulton at Derriford in Plymouth. We liked him a lot. He's just come back from a 4 month leave, so I imagine he's quite backlogged. He's NHS and doesn't do private as far as I know.
  15. Hi Lee. Have you been on the POTS UK website? They have a list of doctors on there who are POTS and dysautonomia literate and aware. I wouldn't accept a referral to just any cardiologist. Ask for one from their list. The trouble is that cardios who aren't particularly knowledgeable about dysautonomia can think you're perfectly fine according to their tests. You end up in a worse place than before seeing them. Sounds like you're in such a rough patch right now. Wishing you lots of luck with getting better treatment.
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