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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Headache advice

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Headache advice › Reply To: Headache advice

April 9, 2014 at 1:25 pm #4971
Miss Bird
Participant

Brian,

Barbara is right. Poor you Brian! We completely understand how you feel. It’s rubbish! Try to be as positive as possible. Before I found ‘Dr Diana the wonderful’ and her fantastic theory I too felt the way that you do. I am a positive and happy person and have never been this low. But, I find comfort in knowing that I am not alone. I don’t know if your daughter is a child, but I don’t know how I could get through this if I had children to care for too. I admire all of you who do.

As for the doctors I too have an appointment on the 28th- I wish you luck- keep us posted. Have you watched Diana’s videos that Barbara suggested on this feed. They were great Barbara (thanks) and have helped me to understand the theory more clearly. I am studying up so that I can quiz my doctor.

I am also in the process of getting a second opinion from a recommended neurologist in London. I also read of a headache researcher in Exeter (if your interested I will find out more) who takes on people for clinical trials. Also, there are lots of headache charities in the uk that are appalled by the treatment of us headache sufferers and they might be able to advise you (again more info if you’d like).

I also have beneden health insurance. It costs me around £8 a month and they take patients with pre-existing conditions. They are a charity and their service is limited but they have twice opened cases for me to pay for my MRIs and follow ups up to the value of £1500 each time.

I was told by my osteopath (who recommended this site) that he had a very similar case with a patient before and it took her 3 specialists before someone would acknowledge the Driscoll theory- so hang in there. I have a fantastic GP and I intend on asking him to prescribe me diamox and fingers crossed I will be able to try it before my next neurology appointment (roll on school holidays so that I have more time!)

Regards

V

P.s I read a Japanese saying on one of the forums here that said ‘true endurance is enduring the unendurable’- how true is that!

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“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”

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