Newbie to here, but not this condition. Please clarify:

[Shom41]

33-y/o male, Wisconsin.

Hi Diana,
I have been dealing with this since 2007. I have tried every nasal spray, migraine medication (triptans, lamtrogine, topamax), Imipramine, Prozac, gabapentin, Lyrica, GABA agonists, NMDA antagonists, NSAID’s, oxygen concentrator, and $1000’s in supplements from Alpha Lipoic Acid to Zinc.

Here is my theory…. Which may be a little different. I ONLY experience my symptoms when I nasally inhale an unknown particle that lands on my nasopharyngeal mucosa. In my opinion, this particle lands, inflammatory mediators are released, resulting in neurogenic inflammation, that impacts my vagus and glossopharyngeal nerves. I experience “brain fog,” parathesias, Eustachian tube closing ( desire to swallow and reopen them), poor digestion, constipation, extreme neck/shoulder pain on the right only, heart palpitations, and a variety of other neuro-related issues (sensations in my stomach). At my worst, I was having swallowing issues, bed ridden. If I expose myself to this “particle x” for long periods, I develop a sore throat, inflammation, infection, which then travels to my longs and results in bronchitis.

Autonomic testing reveals peripheral neuropathy.. No big deal. MRI showed Cavum septum vergae (supposedly a non-fused brain is no big deal). Carotid arteries were narrowed in the subclinoid area. Abberant origin of the subclavian artery. Cervical internal carotid is medialized and indent oropharyngeal wall at c3. C5-6 disc herniation – no impingement.. C1 rotates onto C2… I thought that was the issue for a while. Saw an upper cervical dc and that was ok. Tried NAET – fail, tried, acupuncture, felt good, nothing long-lasting. Tried dynamic neural retraining programs. Failed..

Allergy testing showed only allergic to cockroach dander.

Pulmonary function test x2 shows obstructed breathing.. No cause can be found. Inhalers don’t improve breathing..dulera works ok.

So, I’ve had a lot of testing done actually… For a variety of things.. Ruling out things as I go.

Here is what works best.. Ibuprofen, Klonopin, and anything that reduces inflammation including omega 3’s, quercetin, nettle root, amlodipine as a calcium channel blocker, selenium,. Nmda antagonists do reduce the severity of the reaction, but over time they are difficult to tolerate (Namenda and Dextrose OTC)…klonopin calms the brain and reduces sensitivity… I do believe I have some afferent c-fiber something going on here…

It is Soooo interesting you speak of Diamox… I obtained big improvements when I went on an oxygen concentrator and I did a lot of research into blood oxygenation, and carotid body chemoreceptors… Diamox was something I put on a post it note, but I decided to request clonidine instead… Which did not work but in theory should supplement an nmda antagonist and amlodipine to reduce spikes in reaction (neuro).

I think you might have this nailed though.. I could never figure out why my reaction comes on so strong IMMEDIATELY. What can possibly trigger a reaction SO fast… Mast cells.. And, If I cause edema, vasodilation, etc. in a local area near my brain stem, could that increase my cfs pressure?? Seemingly so… Or, is the increased CFS pressure causing my sensitivities? Don’t know.

So, are you saying stop the inflammation on one end, stop the pressure on the other, and most symptoms should be controlled?

So, I can’t seem to find your Part Two protocol? I read that was taken down for updating?
Is it common for people to take Zantac and Zyrtec to control mast cell degran and also use cromolyn sodium (generic ok)? How much z and z? And, your video stated that your gastrocrom was very expensive.. Is the OTC cromolyn spray adequate? I assume gastrocrom is super strength.. Haven’t read about it yet…
You feel Diamox could be of benefit… 125/125/250 (for you)?
Any thoughts on quercetin in addition to cromolyn? I read q is a better mast cell stabilizer?? I would just take both anyways.
Why do people say ketotifen is not available in US? I swear I saw it at CVS tonight (fumarate)? Eye drops? Oral
I bought cromolyn sodium again tonight before I found your site.. I was going to give it a second try because I can be impatient and I’m going to target my nasopharynx more closely this time..
I have been targeting Il-1beta, Il-6, and Il-8… Any experience targeting specific interleukins?
Any thoughts on other calcium channel blockers that stabilize mast cell membranes..

Appreciate any answers.. If you had time to respond to only one question, I’m just really excited about how to get started with a treatment protocol. Of course, not to be used as medical advice, nor is any ot the information I provide above,

Any other pointers would be appreciated – great work!!!

Best Regards,
Tom

No Md’s in WI I noticed on the board using the search function??

[Barbara]

Hi Tom,
Fyi, I too think Quercetin is part of the answer.

I am taking 1 x 150mg Ranitidine (Zantac) twice daily
Plus 1 x 10mg Cetirizine (Zyrtec) three times a day,
Plus 250mg Acetazolamide (Diamox) at night
(amongst other things)

With regard to the breathing, I noticed that, after my head/neck injury in 2002, I lost the urgency to breath in (the soreness you get in your diaphragm after you’ve breathed out, which makes you breath in again). When I worsen (symptom/pain/discomfort wise) during the day from time to time, I notice that I haven’t breathed in for a while, then when I start to breathe more regularly and more deeply this additional discomfort disperses (the same whole body discomfort wakes me up during the night too and I can wake up gasping).
Regards
Barbara
(UK)

[Shom41]

I took Z&Z last night (just 10mg and 150mg) and cromolyn sodium 4x per day. My diet has a big impact on my sensitivities as well. I met with my Md yesterday and joked that I was climbing Mt. Kilimanjaro next week and that I needed Diamox. He’s very open-minded, and gave me an Rx for a year. I took 250mg at 3pm, and another 250mg at 1030. I woke up now, at 230am , after I was coughing with some pretty interesting sputum from my lungs. Actually, my sputum almost tasted like bile aspiration which was pretty painful.

However,. I stayed up because I feel like I could go run a marathon. Seriously, after two pills of Diamox, I am noticing something major… I do have the effect of flat-tasting soda…which I thought was funny.

Your note about breathing really stood out to me.. My wife will often hear me take a deep breath, and release.. And then, she will remind me to breathe again. She has always felt something has been wrong with my lungs… I had done a lot of research on alkalosis and acidosis but could never really figure it out,, Doctors say I have obstructed breathing… I take in more oxygen than I release… It’s like my diaphragm isn’t strong enough to push out the intake, I don’t know..

I just still can’t believe how I feel on this diamox.. Hope it lasts..

Thanks for replying,
Tom

[Barbara]

Hi Tom,
I’m not sure what your obstructed breathing is precisely but I’ll tell you my experience:-

Whenever I catch a cold and can’t breathe through my nose, I have terrible breathing problems on a night. I breathe in, then my throat seems to collapse shut, and it’s like I haven’t got the strength to push my throat open to breathe out, weird! That would make sense of your diaphragm theory – i.e. weak diaphragm muscle. Normally this is only prolific when I’m ‘mouth-breathing’.

However, something else I have come to realise happens, when I don’t have a cold, if my head ‘cantilevers’ forwards (like as if you were looking into a low cupboard) my throat easily collapses. To correct it, I have to pull my head back into a neutral position and it eases the problem. If I subsequently put my head too far back (so that it’s slightly in ‘extension’) this can cause swallowing (therefore aspiration) problems when I’m asleep and I wake up coughing.

I have to say here that I sleep sitting up (at 90 degrees) so my head (even with a Philadelphia collar on) can fall into these positions, once the muscles relax for sleep and the integrity of the neck is left up to the (naff) ligaments!

Most of my trouble seemed to happen at night (and I bore the consequences the next day – or the following days/weeks etc!). I too have looked into the acidosis type issues and have studied my urine PH several times for a week or so at a time. Typically, on a bad night, my morning urine PH was very acid, almost off the scale, in fact generally it was very low when I woke up, certainly NOT what it should have been – but then each day, as I got up and was moving about (and starting to feel better than I did) the result became normal.

I altered my diet to try and improve my urine PH but it didn’t really bring the improvements I would have expected. I would be interested in hearing your thoughts/experiences of acidosis.

My symptoms started suddenly, following a head and neck injury (having had a previously normal very active life) then progressed over months, to a state of disability. The injury had caused a ‘cranio-cervical instability’ (knocked my head loose!) which went untreated for 5 years! Now I have to wear a collar 24/7. I had an underlying very mild form of EDS/hypermobility, which I wasn’t aware of. I am wondering if those with a more severe form of EDS/hypermobility develop ‘cranio-cervical instability’ due to the fact that the head is only held on by ligaments.
Regards
Barbara
(UK)
—————————————————————————————————————-
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; 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; Mild Scoliosis; 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!

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