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Ehlers-Danlos Support UK
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Craniocervical Instability Symptoms

Hi all

Does anyone suffer from craniocervical instability? I have some of the symptoms, including POTS but some days are worse than others and symptoms seem to come and go, although I never feel 100%.

Can craniocervical instability symptoms come and go or are they constant?

Thanks, Ella

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I don't have carniocervical instability but am fully aware of the "coat hanger" symptoms of pots which did make me wonder many times. The coat hanger effect is when the muscles in the neck and top of shoulders ache so much you feel you can barely hold up your head. The physio advised on upping the salt and water to increase my blood pressure and it helped enormously, basically it's dehydration. The days I neglected to get enough in were the days I suffered. However I will say that since I decided to go on bioidentical hrt my blood pressure has increased and I don't suffer with POTS. The oestrogen obviously helped increase my blood pressure and now I don't need to do all the salt and water stuff. My blood pressure had started to drop in my late thirties, I finally went through the menopause at 52 and only got diagnosed with hEDS at 54. The oestrogen certainly helps the bone and joint pain and the gut motility. I also have testosterone cream because I developed osteopenia and generalised bone density reduction in the 3 years between bone scans and only a year post menopause.

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