Stabbing headache when head positional change

[Amy Kann]

I have POTS and I have been seeing doctors who specialize in headaches for  6 months. They are guessing that I have a csf leak but I don’t have almost any of those symptoms but rather am the type who would get a csf leak. When the headaches started, I had intense headaches all day and night that started from tender points in my neck. One internist suggested that I had myofacial pain syndrome. I started pushing hard on these trigger points in my neck which helped and I began to have some control over the headaches. But now I have sudden sharp stabbing pain when I stand or sit up and sometimes when I bend over. It lasts less than a minute but I often fall down screaming in pain. I’ve learned that if I push on my carotid artery, I can make the head pain stop. I may have EDS -I’m hyper mobile and because of the RA, POTS and possible EDS, the docs think the best guess is a csf leak. But csf leaks last longer than a minute and also tend to worsen as the day goes on. Mine do not. They say maybe I have paradoxical symptoms -which seems illogical to me. Since I learned to push on my neck I can control the pain.  It seems that either there is too much blood leaving my brain or too much going into my brain. Also I have developed pulsatile tinnitus. I had severe POTS 20 years ago which got better after two years of illness. Now it’s back though the headache doctor says I only have orthostatic hypotension. My heart rate is 35 points higher from laying to standing, so I believe the headache doc is wrong. I’ve asked if maybe my carotid artery could be the problem and they say no. 
Tests showed enlarged pituitary, normal MRI, normal X-ray, normal MRA and  normal bloodwork. Next are cat scans in the next month or two. Very slow health care here. A spine doc thought I might have C1 and C2 vertebrae instability and so now I’m exercising to strengthen neck muscles but the headache docs think that I don’t have neck instability. Does any of this sound familiar to anyone? I’ve been reading about POTS and they say something about blood flow/sympathetic and parasympathetic sympathetic systems and vaso constriction and dilation. I wonder if the reason I have the stabbing pain is that the POTS is doing something to allow too much blood to flow   In one direction or another. I can’t find any POTS doc in the Philadelphia area. I’d have to go to Hopkins which is two hours away and almost one full year to get an appointment.  If anyone has any ideas about stabbing headaches and Pots, please write in.  I’m having a hard time keeping my mood from tanking... it’s been so long without answers.  Thank you for reading this and trying to help  

 

 

[redpenny11]

How did you fare with the headaches? I am experiencing the same right now very intense back of neck up head with nausea and intermittent vertigo . I’m also in a full on flare after years or normalcy with pots.