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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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please help figure this out -MAST CELL ACTIVATION or crazy type allergy??

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › please help figure this out -MAST CELL ACTIVATION or crazy type allergy??

  • This topic has 1 reply, 1 voice, and was last updated 9 years, 10 months ago by MJ.
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  • April 26, 2013 at 9:07 am #443
    charlie1
    Participant

    I am currently taking 10 mg zyrtec, 150 zantac, cromolyn nasal spray and 60mg sudafed daily. Despite using a vaporized every night and raising head of bed 6″, I still wake with the right sided occipital headache with pain behind the right eye and stuffed right (or both) nostril. Occasionally, these symptoms occur on left side of head but regardless, I will remain stuffed up until sudafed kicks in or I use a nasal decongestant spray. I must sleep on my back b/c of chronic neck pain post MVA. Lying on either side causes severe neck pain and instant headache. Cervical collars make pain worse so I just stuff feather pillow behind my neck for support and am able to fall asleep with help of muscle relaxants and .5 mg. ativan nightly.
    In the a.m., if I turn my head a few degrees slowly upon waking, the headache will worsen AND THE STUFFED NOSTRIL WILL SWITCH SIDES!If I don’t soon get out of bed, the headache will turn into a migraine that only a prescription triptan can alleviate. If I stand up from bed within 5 min of waking (difficult due to POTS), the headache soon goes away (!) but the stuffiness does not. This is so frustrating. I can not figure out what’s happening.
    Does this look like hydrocephalus or a stubborn year round allergy? Nasal stuffiness (never mucous leakage)has happened a long time now, perhaps since MVA 7 yrs ago or maybe even earlier than that.
    I might have EDS since I have so many of the strange symptoms mentioned on this site. I’ve always been flexible but since POTS (1 yr. ago), I am subluxing daily. Also, an ‘old’ dislocated shoulder injury that I have no recollection of was found on xray.
    So that’s the background, here’s the question – Since I’m on the mast cell protocol with no relief in above issues would that mean I do not have MCAS or MCAD? There is NO way my doctor will prescribe DIAMOX to further test the hydrocephalus theory but anyway, I react with hives when I take sulfa drugs :-/
    Any suggestions for the morning headache and and accompanying stuffiness? Where can I get help from here? Willing to travel to find answers.
    (in case anyone is looking for POTS help, Mestinon helped me greatly)

    May 12, 2013 at 3:23 pm #3660
    MJ
    Participant

    I am not sure if this helps, but I too sometimes wake up with a stuffed nostril. Usually the left side, but it can be either. I do not have any allergies at all and I am not on any medication. The only relief I seem to get from this Is raising the head of my adjustable bed so that I am practically sitting straight up (and it takes forever). I always thought it was because of pressure in the head-CSF build-up pushing the brain down into the brainstem or CCSVI. I also have vascular issues, but no confirmed diagnoses in this regard. An electrophysiologists thinks I passed out during the testing because of vascular issues related to EDS – not because of dysautonomia. He is also sending me to someone in regards to MCAD. I think you can rule out the allergies being the cause. I would say hydrocephalus, CCSVI, MCAD and vascular issues all being possibilities. I am sure Dr. Diana would know…

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