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[CrispyChick]

Wel, here I am again.

I've not touched anything hormonal for 8 weeks. I've been on 75mg desogestral (cerazette) since June.

The last 5 weeks have been some of my toughest ever. I've regularly felt like I need to die to get away from the awful physical symptoms. Despite feeling hideously periody and nauseous with hormones, I thought things were slightly improving from 5 weeks ago.

But alas. Today I feel hideous motion sick, gagging with nausea, so so ill and toxic, my ears are full and sore, my emotions are all over the place and i just cry constantly.

Doing nothing doesn't seem to suit either.

This is exactly how I felt when all this started 9 years ago. But how with emotional turmoil on top. Plus hot flushes.

I really cannot go on...

Perhaps I go back to 2 desogestral and just live with the joint pain??? Or 1.5???

My GP suggested mirena. Or combined pill. But I tried all the combined pills a few years back. They give me migraines and trigger suspected mcas. As hrt does.

Out of options. Struggling to go on. 

[Flamingo]

Hey crispy chick, I think you need to find (do research AI can help) a really knowledgeable hormonal/menopause specialist.  Get all your bloods done via gp so you are armed and hopefully they will be able to help soften your symptoms.  Gosh it's so horrible being sensitive to hormonal changes, I'm the same.  Keep going xx

[CrispyChick]

Thank you for replying Flamingo.

I have booked one of the top (I hope) hormone experts. But that's not until Jan.

So from now until that appointment I feel I'm in some sort of endurance horror show every day. I just don't think it's sustainable to stay in a place where I feel so physically ill, i'd rather be dead.

Over the summer, when the double cerazette had supressed me, I had agonising pain. But I no longer wanted to be dead. I think that's because I was supressed.

So I guess I'm wondering about retrying combined pill. Possibly zoley. But I note, apart from the crying, I'm in a nicer mood just now - if I change again, I'll go narky and rageful. Any Estrogen I add will trigger my nose pressure headaches daily.    plus, the change itself will poison me for at least a month.

What a way to live?!?

Apologies if we've spoken before - what happens to you with hornonal sevsitivity??

P.s any other bloods needed except E, FSH, lh and thyroid?

[dangermouse]

Hey Crispy, I believe you did have a DUTCH test, were your oestrogen pathways ok?

I know DIM made you much worse but it can do that as it works its way through and if you take too much it can lower E too much.

Regardless of what you’re trying you’ll have E floating around and needing to be metabolised and it does seem to be the MTHFR aspect that compounds the hormonal volatility.

[CrispyChick]

Hey DM.

Yes, pathways looked ok. Plus my methylation was good.

I don't actually think my issue is hormone levels. Otherwise it wouldn't have been so severe in chem meno.

And every time I add/remove hormones it all kicks off. Which I think is why most people tell me now to stabalise on nothing.

But on nothing (well just cerazette controlling nothing) I'm in absolute hell every day as my body reacts to my natural peri movement.

I just don't know if I can sit here 'doing nothing' until Jan when I see the top expert - who may or may not be able to help.

I'm seriously thinking about zoley.

[Mary G]

Crispy, you probably have more than one thing going on and MCAS sounds likely but you obviously have menopause induced migraines too.  These are chronic migraines that can result in 15 migraines per month and they don't necessarily present as headaches.  This is a debilitating condition that means you spend most of the time in either prodrome, the actual migraine itself which can have any number of manifestations or postdrome.  This would make you feel very ill for most of the time.

It sounds like your body is crying out for oestrogen but you can't process it.  If migraines are part of the equation then you need to close down FSH and LH to create a stable environment and then add in oestrogen so Zoley sounds like a good candidate.

MCAS will need additional medication to help you process hormones so you really do need a diagnosis.  I just don't understand why you have been left like this for so long without proper help.  Why haven't you already been tested for MCAS? 

Have you tried taking antihistamines alongside HRT? When you do eventually see a specialist they will probably prescribe additional medication like calcium channel blockers. 

[CrispyChick]

Thanks Mary.

The severe nose pressure (migraines?) is certainly induced by adding hormones. HRT will kick it off within 24 hours. And it stays. But, progesterone can also kick it off.

Combined pills kicked it off every time on those trials.

Mini pill I'm ok, but it's not doing anything.

Then there's the stomach that kicks off as soon as I put these hormones in my body too. Excruciating stomach pain. I can only assume it's an MCAS reaction, as my stomach is fine when I'm not adding in. And endoscopy clear.

Why have I not been tested??? Well, to start with many in the NHS don't believe in MCAS. And certainly finding someone that deals in it is impossible in Scotland. There isn't even an immunology service where I am.

My Neurologist has poo pooed the idea - along with anything else that I mention - as he believes all my issues are nervous system. I hope they are. I'm doing the Gupta programme just now.

So. I see the very expensive ME / MCAS / dysautonomia specialist soon. I agree. I want these things ruled in or out once and for all.

Unfortunately I know the treatment for MCAS - and I tried one via my GP last year - it caused an immense nose flare (which can happen).

I regularly take strong antihistamines as I have normal allergies. I also take montelekast. But they dont touch any of this stuff.

My concern with zoley is this:

The estrogen will kick off my nose pressure and  migraines severely. That pill may or may not trigger severe stomach pain - that's a deal breaker.

It will re flare the hell I am currently in. Simply because it's a change. The question is - can I survive it? And will it settle?

Ideally I'd like to do nothing until I've seen the mcas specialist. And really the hormone one - but that's a long wait. My benchmark is how often I feel I'd rather be dead.

And yes, I've lost the faith a bit to be left feeling like this.

I'm also starting therapy for chronic illness and trauma as I think I am now traumatised by it all.

I just long to feel 50% better. Right now I'm sick as a dog, motion sick, spinny head, ear pressure/pain and just simply feel hideous. But I have no low E symptoms this week. I'm clearly in a follicular even though the Cerazette prevented a bleed. This is classic days 1-7 for me.

Thank you so much for still trying to help.

So, i guess the question is zoley? Or not?

[CrispyChick]

I just write down all my E and fsh blood results for the last 14 months - of which I have many.

My E has been all over the place, just as they say if is in peri. My FSH is now the highest it's ever been.

So it is clear I'm in peri fluctuating hell. My main issues are not linked to low E. Yet...

[dangermouse]

One thing you could try whilst not changing anything (or even if you do) is to write down every day in a diary/calendar if it’s a bad/ok/good etc day plus any other different feelings like anger/nervousness to look for a pattern. This will help you to know what to expect when a really bad day is looming. I often found that those were the ones where I would take/change something in desperation not realising the worst days were often followed by a relief day, such as ovulation.

In peri it may not for a 28 day cycle but if you have some obvious symptoms you can work out the cycle length from that and it’s so you know what to expect from what came before rather than a strict day of the month prediction.

It may also help the consultant to see what might be going on if you have a couple of months to show them.

[CrispyChick]

Thanks DM.

I do do this. It's not pleasant reading.

I can already say for definite that the ears and spinning comes pre and post period. The Cerazette has stopped my bleed this month. But I now feel in early follicular. So I know these symptoms are hormonal. I might as well have bled, I'm no better off.

Unfortunately, I don't ever get a better day. Ever. Every day is horrific.

Admittedly some I want to be dead. Others I don't. So yes, I guess that is my benchmark.

It is clear, when I supressed on more cerazette in the summer - I was in a lot of joint and muscular pain, but I didn't want to be dead.

This is why I'm seriously considering trying zoley right now. Because every single day for the last 5 weeks has been pure torture. That is definitely fluctuations as it started with a breakthrough bleed.

But, I also know my body kicks off when I make changes. Violently. Even when I removed all hormones. So I feel truly stuck.

I just don't know I can hack feeling this physically bad for much longer. 

[dangermouse]

Yes I know what you mean about good days! It’s more relative though so you can see the difference but clearly you’re already doing that.

Could you do the Cerazette as in the summer and then when the joint pain hits, start the E or Zoely? Or did you try that then?

[CrispyChick]

I tried hrt on top of cerazette.

It instantly triggered my nose pressure, headaches, which I was living with. But then I increased dose to the highs of 25mcg and I felt so so ill and my stomach kicked off in agonising pain. So I had to stop. Then stopping caused horrific agitation.

Honestly. I give up.

I know I need to sit this out. Because there is no help for me.

I just don't know if I can keep going. It's too much. The symptoms seem fiercer than ever this last 5 weeks. 

Thank you for trying to help. I do appreciate it. I've got a fear that even a top hornonal expert is going to say 'sorry. You've already tried it all, there is nothing I can do'. 

[CrispyChick]

I have pondered 1.5 cerazette, because, what the hell