Jump to content

Julia Panther

  • Posts

  • Joined

  • Last visited

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

Julia Panther's Achievements


Newbie (1/14)



  1. I know this is an old thread, but an interesting one... My daughter has heds and suspected pots and mast cell activation syndrome, which appears to give her ME symptoms (rather than the often mentioned hives and flushing, which actually not everyone with mcas has!) I need to reread the Driscoll stuff (have it somewhere) but I seem to remember when I read it before it suggested mast cell activation might cause the intracranial hypertension issue? Or maybe I was just linking the two things in my own head? I can see why hypermobility alone could cause issues with intracerebral drainage etc, I just wondered if any of you had looked into mcas as a cause of intracranial hypertension and hence POTS? Also wanted to say thank you for ideas re vagal nerve stimulation and Perrin technique...
  2. Thanks to all of you for replying... My daughter is now on low dose Propranolol betablocker. Really helps with headaches though she has to take them several times a day as they wear off. But still has severe coat hanger pain when she raises her arms and we are thinking she may need to give up the violin, which would be really sad as she plays beautifully. Any solutions for that one? Sadly she can't see Prof Newton in Newcastle (though we live near by) as she only sees adults (well, 16 and up, my daughter is only 12..) Interesting re the aspirin and the risk of strokes... hopefully the beta blocker is making that less of a risk? Kids not meant to take aspirin... risk of Reyes. Have read about Henderson's work, but think it needs to be a vertical MRI to spot Chiari... can't get one here...
  3. Hello, i noticed that you found midodrine really helped you.  My 12 year old daughter has Ehlers Danlos hypermobility type plus POTS and has terrible coat hanger pain when she tries to play the violin (or anything where her arms have to be up!)  She is on beta blockers and they have really helped with her daily headaches, but not with the coat hanger pain... Do you find the midodrine helps with the coat hanger pain?  Many thanks...

  4. Hello, I understand that you are a professional viola player... I teach the violin myself, and my daughter (who is 12) has Ehlers Danlos and POTS and was doing really well at the violin. But now she has really painful shoulders which I think are due to coat hanger headache (muscle ischemia due to her brain getting all the blood so she doesn't faint), possibly?  She hasn't been able to practise for weeks because it hurts so much to lift her arms up... I just wondered if you'd ever had issues like this and if so what you did about them?  She currently is on beta blockers and compression tights, trying to drink lots of water and salty food (but at present doctor telling us not to give her salt tablets...)  I am beginning to wonder if she will have to give up the violin which is really sad as she plays beautifully...

  5. Hi, we are currently trying calc carb for my daughter's POTS. Though I really don't understand why homeopathy works, we have seen it work numerous times. Sometimes one has to try several different remedies to find the correct one, so don't give up straight away. Although lots of scientists deride homeopathy, it isn't very scientific to dismiss something just because you cannot yet explain it scientifically. Also I find it interesting that many conventional medicines are used although doctors cannot explain how/why they work... what is the difference? Oh, apart from the fact that these medicines often have numerous serious side-effects! Good luck in your trial of Belladonna and do let me know how it goes.
  6. Interesting... it occurred to me that you might want to look at whether the things you weren't eating as a vegan (e.g. dairy, eggs) were important sources of magnesium, either because they had high levels of it in, or because the form the magnesium was in made it easily digestible... Just an idea... perhaps you could still eat vegan if you included enough avocados etc to keep your magnesium levels high??
  7. Hi, I am new here. My 12 year old daughter was diagnosed only last week, though I'd had suspicions for some time as she has Ehlers Danlos and daily headaches with it... We are trying to find out if her headaches are 'just' due to POTS (and if so how to stop or decrease them!) or if they are more to do with muscle tension in her neck, or even Chiari etc. She doesn't usually have a headache first thing in the morning, but she does have one every single day by the afternoon, and it's worse if she looks down, and it's worse if she's spent the day at school (presumably because she looks down a lot there!) She also gets some blurred vision, and occasional frequent urination bouts. Doesn't seem as severe as when I get migraine and have to lie in bed in the dark, but the fact it is every single day (and has been for more than 6 months) is pretty upsetting to her. The headache doesn't seem to go away until she goes to bed for the night again, though there have been the odd occasion when some combination of Paracetamol, Tiger Balm on neck and Nuun electrolyte drink seem to make it get a little better. The doctor said if it was a Chiari problem she'd expect vomiting and waking in the night with a headache, but what I've read online suggested this wasn't necessarily the case... Also, the doctor is keen to try standard headache remedies before suspecting anything sinister, but are there standard remedies for e.g. migraine that someone with POTS really shouldn't try? This doctor doesn't know anything about POTS and I'm a bit worried that she suggests something like beta blockers, which I've heard are good for certain types of POTS but not others... There isn't a POTS specialist up here in the North of England (we live in Durham) who will see kids.... unless anyone knows differently?
  • Create New...