I’ve been diagnosed with MCAD (also have EDS, Chiari, dysautonomia/POTS, IH/Pseudotumor, etc) by one of Diana’s friends who is working with her in research. I’ve been on H1/H2 blockers (ranitidine/cetirizine at standard dosing of 150mg BID and 10mg QHS daily) since Jan and at my last appt, we added Cromlyn Sodium RX 50gm (2.5mg vials) QID. My rash seems to overall be worse and I really don’t know what to be expecting…nor can I get my head around what MCAD and the mast cells in particular do…and why whatever they’re doing to me now is such a pain and the seeming “backlash” against the treatment with the rash getting worse.
Could anyone point me to info (even if it’s which of Diana’s videos, write ups, etc) or other links to information on understanding mast cells and MCAD and what’s going on with my body.
I’m going to have an MRV soon to check the ventricles in my head and the veins in my head and neck and we’ll be using that to plan shunting. I’m fortunate to have an amazing neurosurgeon locally who does a lot of research on IH issues, mathematical models for draining the fluid, he’s familiar with the angioplasty of the brain as a treatment, etc so I’m very comfortable with his knowledge and manner. But the pain I’m in now is absolutely unbearable and getting worse each day (the headache being the worst) and my coping skills just aren’t keeping up – and neither is my pain management regime.
Thanks in advance. I look forward to hearing your thoughts!
I’m sorry for your pain and I believe there are lots of contributing factors. The only advice I can give you is based on what has worked for me. For the occipital head pain, the best thing I found was a rigid Philadelphia collar (and brace) certainly at night, if you cannot wear it 24/7. It brought instant relief to my head, neck and shoulder pain and I believe it does this by holding the head in ‘good relationship’ to the neck, thus reducing strain on the neck muscles and, more importantly, allowing optimum CSF flow (for people in our condition) by restricting the positions that we can contort into, certainly whilst we’re asleep. Also try raising the head of the bed.
I’m sorry the Mast Cell treatment doesn’t appear to be working very well, you need to ask your specialist about your worsened symptoms. What tests did they use to diagnose you ? I have only just started down the path of mast cell treatment so am not qualified to comment but it may be a case of ‘you have to get worse to get better’! You also mention that you have started the stabilizer but you don’t say when. I have watched a video today that talks about not seeing a difference for 3 weeks or more, has it been this long on the stabilizer?
Try these Dr Diana videos, you have to cut and paste the links as I don’t think any links work yet on the site. Many if not all of Dr Diana’s videos are on YouTube, so you can better search to find the one you want:
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!