MCAD

[Rae]

Hello,

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!

[Barbara]

Hello,

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!

Hi Rae,
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:

Regards
Barbara
(UK)
—————————————————————————————————————————————–
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!

[Barbara]

additionally, here’s a general pain thing I wrote earlier . . .

Have your Vitamin D checked, as several on here are photophobic, or stay in the shade when the sun is out, therefore never actually get a proper top-up of Vitamin D, and so this essential vitamin can deplete and cause a lot of PAIN.

If approriate, get your estrogen levels checked, as this may need supplementing too. This relieves some of the pain.

DON’T push yourself to do more than you can, as the bi-product of this is lactic acid in the muscles – more PAIN!

Get a massage whenever you can, as this helps the lymphatic system drain away toxins, inflammation and therefore PAIN

Those with leg pain – try a nice salty bacon sandwich – yes it does work! (especially for the ‘purple leg’ or ‘white leg’ pain)
Let me know how you get on.

[mommy2seanp]

How did you start the cromolyn? Did you work you’re way up to the required dose? (1 vial 30 minutes before a meal for a week and so on?)

I started seeing a positive difference in my son at week/ vial 4 (100mg vials). I’m on week/ vial 3 (100 mg vials) and am starting to notice small improvements. Dr. Castells told us that it will take 3-6 months to see it’s full effects.

If you think the rash is from the cromolyn you should probably discontinue it and check with your doctor. There are other mast cell stabilizers like Ketotifen.

Sorry you’re going through all of this.
Tina

[Rae]

Thanks for the replies, everyone. I really appreciate it.

Unfortunately, my specialist on this issue is 500+ miles away & my PCP is overseeing the mcad treatment. I wasn’t told by my specialist I’ve been taking this for over a month. to work up to the cromalyn sodium dosing so I’ve been taking the full dose of 100mg viles 4x/day since the beginning. I mix it in vitamin or sobe water with stevia as I have less problem swallowing that than plain water which is really difficult with my dysphagia. I’ve been taking this full dosing from the start for more than a month now.
thoughgo
So with that information, does that have any bearing on your thoughts or help fill in the picture for you at all? I’d love to hear any additional ideas or thoughts you have. Thanks so much. I can’t tell you how much I appreciate it.

Hugs & many thanks,
Rae

[mommy2seanp]

If you feel the rash is worse because of the cromolyn I’d take a picture and email it to your mast cell specialist. My son and I have both seen a slight increase in symptoms when increasing vials but they go away rather quickly and they’re mostly GI in nature.

Is it flushing, red splotches, or all over body rash?

[SweetFeather]

Read more about mast cells on Dr. Theoharides site and the antihistamine called Atarax (hydroxyzine) which crosses the BBB. I had to start with only tiny pieces of a pill during the day or I’d be too sleepy but I’m now able to take 10mg doses during the day without feeling sleepy. I take 25 mg at night and awake in the morning feeling rested and not groggy. The difference in my cognitive function has been dramatic and I’m off my ADHD-inattentive meds completely. My memory, attention, and problem solving have dramatically improved and I haven’t had any major mast cell degranulation episodes. My resting heart rate is lower now too.

[Barbara]

Wow, thanks for that info SweetFeather, it’s good to hear! I’ve been on Cetirizine a short while but I’ll certainly mention the Atarax to my GP, it sounds well worth trying. I’m also very impressed with Dr Theorides, he seems very enthusiastic and thorough in his research and I see he did 18 years research into MS in the first instance. I must say his video’s are very educational (although he does talk too fast for my slow brain at times!) I have also passed on his research on the Autism aspect, to some other families affected in my community, so thanks again.
Regards
Barbara
(UK)

[Dr. Diana]

Hello,

I’ve been diagnosed with MCAD

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..

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!

Hi Rae, I’m so sorry to hear about your issues. Ugh. You’re in good company, though and came to the right place! First, some clarification — do you know if you were diagnosed with MCAD or MCAS? This may be important. The “regular” dose of liquid Cromolyn is two vials (mixed in water) 4 times a day. Are you taking the full dose? If you can show us pics of the rash, there are a fair number of us here who may have some ideas. Did you shoot pics to your doctor? As far as the high ICP goes, were you able to try Diamox? I expected to stay on it for life, but after a few months, I hardly need any at all. This is GREAT, as we’ve been able to avoid shunts AND angioplasty. Research trials almost ready, but until then, some of our “special issues” are reversible when targeted properly. If you can use duct tape (Diamox, collars, mast cell meds, etc) for now, the trials will allow you to treat the underlying cause of the venous issues. Cool? Hang in, my friend. This is both a terrible and a great time to be involved in figuring all of this out. Big hug, Diana

[Sunshine]

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