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[CrispyChick]

Dangermouse - did you find the agitation/overwhelm calmed once you were past this stage???

[dangermouse]

I had it to such a severe form that I would shake and could not keep any food down. One A&E triage nurse was convinced I was having a heart event one time as she could see I was calm in myself but I had a strong and consistent tachycardia and my neurological signs were all off the scale.

So now it’s much less, much less! Still there as I go through mid-cycle and end of cycle so it has its moments. This month is feeling better for where I am in cycle since I started a full on anti-fungal/binders programme so I’m hopeful that this is more the underlying issue. I’ve always suspected there is one.

Interestingly, MCAS keeps coming up in my Candida/SIFO research, apparently fungal overgrowth can trigger MCAS. I certainly have many of the MCAS symptoms but antihistamines don’t do much so I assume it’s not significant.

[CrispyChick]

Ok. Thanks. Good to know.

I'm totally buying into the brain retraining today because I can feel how ammped up my nervous system is.

I did get horrific agitation when I stopped my hrt trial a few months ago. I'm feeling pretty periody, so it could be a drop in E. God knows. I've had agitation issues a long time though. After both babies too.

But perhaps never as bad as it is how as I feel like, if pushed (stressed) I have a massive meltdown. And that can be someone asking me to do the simplest, tiny thing.

For your info, MCAS is much wider than histamine. I don't believe I am histamine Intolerant. I too take AH for bog standard allergies. But the MCAS treatments are mast cell stabalisers. Because they release a heck of a lot of other things too. Anyway, I'm hoping I'll get a yay or nay to this when I see that particular specialist shortly. Happy to update u privately if you wish this info??? X

[Tressym]

I’m ready to chat anytime! I’m also 49, in the U.S., and as for hormonal stage- the fluctuations were always tough for me even pre-MCAS, so I suppressed them with mirena IUD for most of my life. My ovaries started overpowering that about 2 years ago and Beth recommended I remove it anyhow as we explored why my MCAS was so spicy (the main reason was continued hidden mold in our home. We’ve since moved to the desert). Anyways, it’s been a sh*tshow since then, discovering how fluctuations as well as  high estrogen states cause flaring. I have a lot of MCAS supports on board so this interaction sucked but was survivable. So, I’m really really really hopeful that if the shoe fits for you, it’ll bring some major relief. Long story short, things went from tough to hellish about 9 months ago. My ovaries are cranking out crazy levels of estrogen, at this point trying (and failing) to ovulate over and over. Nobody believed me for the longest time (i.e. doctors and other Reddit posters constantly telling me to take more estrogen like broken records), so when I found your posts, I was like THIS HAPPENS, damn it.  I’ve been tracking levels in my urine daily using a fertility tracker to show my semi-useless doctors like- estrogen goes crazy high for days, I feel poisoned and get episodically, deeply mentally ill. Stop suggesting HRT! And that triggers the MCAS and my limbic system to go off, so nauseous basketcase for days. So I’ve been cycling through options to suppress my crazed ovaries as I feel much better when levels are low and stable. My second progestin only pill I tried (Slynd) I overpowered after 1 month, now looking at low dose combo pills and maybe chem meno down the road? Sounds familiar!

[Tressym]

Crispy, thumbs up for Gupta. I did DNRS in 2017, which is similar, and still use somewhat automatically some of the CBT aspects to keep anxiety from going full bore limbic (though when I go nuts during estrogen peaks, nothing beside a benzo works). I know a lot of people who were served very well by Gupta! That’s really great you’re open to it because initially I thought the subtext of these programs was that symptoms were ‘all in my head’ which royally offended me. But it’s not.

[Tressym]

Apologies if I’m being overwhelming with posts/info. Just excited to connect.

Danger and Crispy, just one more layer I wanted to mention that’s helped me explain some of what’s going on. Could be a rabbit hole but have you looked into MTHFR SNPs? For example, some of my genetics, like slow COMT, slow MAO-A, compound heterozygous MTHFR have pretty profound effects - like poor estrogen clearance, which gums up the works and allows certain neurotransmitters to build up (dopamine, norepinephrine, epinephrine), which is why I go completely batshit when my body is flooded with estrogen. Not sure if it’s exactly the same for you but sounds like you both have some major mood effects you’re trying to sortout.

[CrispyChick]

Hey Tress

Well, yes, it absolutely does sound familiar. I can possibly help you work out the hormonal trials - as I've done them all. And I'm very interested in your MCAS and what you call your MCAS supports.

So firstly, yes, I have tried to supress for years. But nothing works now. I'm currently on 75mg desogestral, which I took all through my 30s with no issue - but 29 days ago I got a breakthrough bleed, triggering one of my worst months on record. And still going ...

Now. I did start at double dose desogestral in April. That supressed very well - low FSH and lh. But I was plummeted into agonising pain, like chem meno - so I can only assume too much supression, too fast. Now my FSH is sky high. So there is no supression.

However, I'm staying on it for the time being as it does stop ovulation. So it might just stop the massive peaks. 

Slynd I couldn't tolerate.

I tried practically every combined pill going about 5 years ago. I needed 30mg estradiol to help stabilise me. Felt pretty ill on the 20mg ones. But the 30mg triggered migraines and this awful nose pressure - which I suspect may be MCAS.

Now. My thoughts have moved on from all those old posts you've got on. I believed in estrogen dominance for years. I chased the estrogen (like you are doing now) but chem meno highlighted estrogen was not my issue. As plunging to the depths of no hormones brought on my worst symptoms. So for me, it's either the fluctuations or it's my nervous system reacting. I think both.

Then adding in hrt in chem meno just triggered the MCAS type issues. There was no hope.

So here I am. Still fluctuating. Still in hell.

So, could you tell me what your MCAS support is??? I have my specialist appointment in a few weeks. I did try ketotifen last year via my GP - it triggered massive nose pressure flares within 24 hours. It was really bad. So I stopped after a few weeks.

I'm liking Gupta. I am struggling to see how all my issues are nervous system. But I am under a Neurologist who has already told me the are. But he takes no account of my hormonal fluctuations. I figure doing Gupta is better than googling my life away.

I'm also about to start therapy for chronic illness and trauma. Because I'm no longer coping.

So. That's where I'm at. I'm no longer chasing the E levels. In fact, mine is a lot lower these days and I get a lot of night sweats and hot flushes, which ars new this year. But still my symptoms come the same. Especially this month. The bleed triggered it.

I still assume fluctuations. X

[Tressym]

Thank you - I haven't tried desogestral yet so maybe that's next on the list. The fluctuations feel rotten to me but they aren't as debilitating as you describe or as crazy-making as the estrogen peaks for me. Hopefully a little stabilization of nervous system/MCAS related things might take that effect down a few notches for you, then allowing you to parse what hormone state feels best?

So, fast drops give you agonizing pain? In the joints, muscles, or? Curious about that.
Adding any estrogen gives me migraines too, affects my vision, tinnitus, and exacerbates plenty of symptoms. Is the nose pressure you get just nose or potentially part of a sinus flaring? Are your ears affected?

For MCAS supports, it was a process. I had already done the nervous system retraining. Next was getting mast cell stabilizers on board, slowly. Beth always said that when the mast cells are really hyped, anything new can be interpreted as a threat...so she'd have us start on 'sprinkles' of supplements, for instance, to avoid setting them off. Ketotifen is one - bummer that didn't help! I found it a little helpful when my MCAS was more hyped. Cromolyn as well. Monteleukast had a mood effect for me but some folks like it. Then there are a literal ton of supplements. I can't say I felt effects from them individually but altogether they settled my MCAS down a lot. I have a long list I can share but some key ones are quercetin, periamine, baicalin. A lot of her patients, including me, had mold sensitivity as the core trigger, so at least some of the supports may not be relevant to you. More on the nervous system front, she was also into vagal nerve toning, which I've also found helpful.

About Gupta- I strongly agree that your/my issues are not 100% nervous system. I noticed with DNRS a tendency for them to overstate the program's powers...EVERYthing will go away if you just follow the routine, etc. Yeah, not true. But it resolved many things for me and I had at that time completely stalled in healing at all, hit rock bottom. It was hard, though, to cultivate a sense of calm and safety when literally my body and mind were falling apart! But, I eventually went to an in-person session with Annie Hopper and started to trust the process after meeting 'recovered' people who helped run the session and also watching some of my classmates improve before my eyes. I was slower to improve - took me about 6 months of faithful practice- but I was still having trouble avoiding mold. That sensitivity unfortunately has not gone away.

[CrispyChick]

Hey Tress

Desogestral 75mg, as standard. Is not strong enough to supress me. But yes, when I drop too fast either chem meno or 2x desogestral - agonising joint, back and neck pain. It's only just gone after 5 months on 1 desogestral. But I'm obviously fluctuating like crazy now.

I don't even know if it's the fluctuations that are making me feel so ill. But yes, after years of chasing E, I do now know it is not that for me. I don't think I actually have histamine issues. Histamine intolerance. But, I'm aware MCAS is a lot more than just histamine.

The reason I'm suspicious is the ketotifen at 1/4 of a 1mg triggered severe nose pressure overnight. And as I increased dose - it got so much worse. And I know there's a common paradoxical reaction to start with. But my Neurologist shot me down with this thinking. But I'm still suspicious, hence the expert shortly.

Sounds like you have more histamine issues.

Oh. And I take montelekast. Stops all asthma in me. Helps nothing else.

Not sure what my nose pressure is. Could well be sinuses. But all checks out fine with ENT. I even had a nose op due to all this. But that was just to remove polyps. There was nothing to see iny sinuses. This symptom has gone on years as I've tried all pills and hormones etc. Combined pills triggered it badly. My latest hrt trial triggered it. But it's not my worst symptom - by far.

Id love to hear what symptoms the DNRS program helped with? I know it's slow. I'm just starting the real retraining on Gupta this week. It's hard going.

Have you tried LDN? Some find it helps MCAS and other inflammatory issues.

Also - have you ever tried progesterone only? Like real bioidentical progesterone - utrogestan or compounded creams?

I spent years trying them. All trigger my stomach like hrt does. And, as I now know, estrogen is not my devil. But it is a well known treatment (outside of the UK) for estrogen dominance. I'm guessing you've tried?

X

[Tressym]

The DNRS helped with my sensitivity to all triggers (mold, chemicals, food, medications, and stuff I’m probably forgetting). At my worst, I developed multiple chemical sensitivity to the extent that I lived outside in an ice fishing tent for several months trying to stave off reactions. Full of fear and constantly overwhelmed emotionally. My HI started showing up then. I’d have these weird reactions, not always clear to what, when I’d feel extremely heavy, almost like I was underwater, or my legs would buckle. My digestion and circulation were affected, very very brain fogged, wired but tired. People in the class had a wide range of different systems and triggers. I felt like hot garbage constantly and was chasing around symptoms that seemed to come from all the different body systems (DNRS argues this is since it’s largely neuro hyper vigilance issue).

One hard thing I imagine Gupta has too was we were encouraged to get off message boards and not talk about our symptoms unless at the doctors. That was hard but critical, I think. Do you have access to an online group through the program? It really helped motivate and convince me to do the program fully!

That’s so great you don’t have HI. But you feel like your immune system is spicy? I’ve tried LDN a couple times, and will again, but it makes me feel really weird and i haven’t had the will to tough that out for more than a couple days on top of all the peri and MCAS stuff.

Yes bioidentical progesterone feels very  good to me but doesn’t seem to help these huge estrogen spikes. I just took my first combo pill and hope I don’t go crazy…