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[CrispyChick]

Thank you all so much ladies.

Just having replies makes me smile. People taking the time out of their day to reply.

I know I need to stop chasing. I've tried hormones in one format or other for years - every pill going (except zoley or qulaira), mini pill. Two years of expensive BHRT progesterone and testosterone. And conventional HRT both oral and patch at times. And...that horrific, traumatising, chemical menopause.

The outcome is always the same - every hormonal move triggers extreme toxicity in my body. Like I'm severely poisoned and so motion sick with it. Sore and tingly scalp. Instant loss of appetite. Noone knows what it is. ME? MCAS? Nervous system???

But, unfortunately my own cycle also triggers it. Always early follicular. Absolute hell.

So the idea of cerazette was to try and tame my own, without suprssing too far. But it's not working.

It's never been about the hormone levels for me. Yet. Always the changes /fluctuations.

So, alas, I'm now going to leave it all be. 

To answer some of the questions - Kathleen - had every single test under the sun, plus random rogue ones. Nothing wrong.

I've tried ssri and mirtazapine. Ssri made me so bad 12 weeks in that I was sent to emergency phsychiatrist. Mirtazapine was simply doing the same.

There could be a clue in here - they are revving up my already overstimulated nervous system. 

I'm now going to try brain retraining. I've been offered some on NHS. But I've also signed up to the Gupta programme. The AI on that is telling me it can help as my nervous system is overreacting to hormonal changes. So the idea is to dial down the response.

It's worth a try. I've decided I'm better focusing on doing that rather than constantly googling and chasing symptoms.

Never found anyone that responds so severely to hormonal change as myself. But, whilst I'm still in peri, I know I'm not going to get any life back.

Noone seems able to help me. But I'm told perimenopause itself should not make me feel like I'm dying. So there must be more to it than that. 

Alongside this I now have the normal peri shit

The outcome is always

[dangermouse]

Hey Crispy, sorry that you’re still in such a bad way. I really do think that adding in anything, when you have strong volatility as we do, just makes things worse.

Once I knew that the combined pill could not even stop my cycle from breaking through, there was nothing stronger that I could then do.

Hormones, or anything that manipulates hormones, also gives highs and lows which means lots of episodes of depression and hopelessness. Once I stopped them, although anxiety is still high, it’s wonderful to no longer have that ‘what’s the point’ feeling.

I was trying DIM for last 2 months to clear the oestrogen better but, after the relief I got that familiar depressed feeling, so have binned that off now too!

Our neurological systems are so closely driven by hormones and you may have silent migraines like myself, from blood flow sensitivities. I know I have to avoid any strong vasodilators, which is hard as most healthy foods and herbs dilate. Caffeine is my friend and did get me out of some awful nausea episodes and now Chat GPT is helping with my systemic fungal/bacterial issues by not including any vasodilators.

Who knows, when I’m about 10 years post meno (at 5 at the moment) and have very low volatility, I may try the oestrogen again but, knowing that exercise, especially strength training, is more guaranteed to improve heart and bone health, I am doing more dance and yoga. Some people on here will probably laugh at that, versus HRT, but it’s actually a lot more powerful than you think. It’s also a great psychological discipline and distraction.

Just look at the facts, your volatility is at its highest right now but that WILL reduce, gradually in time. If I were you, I would just stop the lot, including the old AD if you still take. Just because it didn’t cause you issues in the past, it doesn’t mean it won’t be adding to your liver/nervous system’s burden in peri, just as the POPs have.

One thing you can say for sure, with no doubt, is that you tried everything.
Now just set yourself free, make your way through the withdrawal, and start to do little things every day to start to stretch your comfort zone, knowing that the discomfort is temporary. The more you repeat the discomforts, the more comfortable they become. Then you add another and another, until you’re flying.

You can do this.

[CrispyChick]

Thank you Dangermouse.

Wise wise words. I do need to stop trying things. They all just give me heightened symptoms or different symptoms. My system cannot cope.

That said, my plan on stopping mirtazapine was to do nothing more. That was 4 cheat weeks ago, but I went straight into COVID and a breakthrough bleed - which has triggered one of the worst months since starting cetazette.

I will stay on the POP as I did 5 months on no hormones before that, and, to be honest, I just wanted to die. I felt, although still awful, I got a bit of relief from cerazette. But I also did double dose, hrt and mirtazapine. So I just need to stop.

You are so right. I am now at the worst volatility. I need to keep going.

I'm getting Neurological therapy to expose me to triggers - I really don't think that they get that it's hormones  but I'll continue.

I now need to proceed with my Gupta brain retraining, trauma therapy and yes, doing little things to expose myself to life. I've started graded exercise to get me back to walking.

I guess I now need to add or remove nothing, to see where my body really is.

Thank you. Xx

[Minnie Mouse]

Crispy, in answer to your question, everything is calming down, including the heavy painful periods.
I used to wander around the house in the early hours switching all the lights on because I was so head mashed and anxious. That's all been gone for a while.
It might be total coincidence, but the biggest improvement came when I started my liver detox: obsessively eating nutritious food rather than all the saturated fat and processed food I used to pile in,
much much less alcohol (sadly), more water. Overnight I was able to tolerate the Utrogestan again, and it felt everything was less...fluctuating.
Someone mentioned liver burden - it's as if our peri bodies are overloaded, and can't cope xx 

[Vicky81]

Just to end (or maybe end) this post .....we love you crispy so much h yiu have all of us here.....yiu are not alone .......I know what it's like ......we are here to give advice and help you .....maybe more experienced ladies in the advice section lol ......but all the love for you is here.
God bless
Vicky xxxxxxxxx

[CLKD]

Never apologise to those around you for things you have to do in order to survive or function. Your wellbeing is more important than their convenience.


 

[CLKD]

Have U considered hysterectomy?  Although major surgery and 1 mayB require some form of HRT after, at least the progesterone part is done with.

Although peri and menopause are 'natrual', many suffer extreme symptoms.  I do think that some of this is down to current lifestyles in that humans don't exercise regularly enough and our diets have been crap for many years without us really taking on board that we were not eating as much 'good' foods as convenience + supermarket shopping became easier.

Also women are designed to keep churning out babies which means menstrual cycles were different ; until we had choices.


The National Assocation for Pre-menstrual Syndrome advised me in 1991? to eat every 3 hours, 24/7. I try to stick to this regime and have in recent years cut out a lot of processed food stuffs. 

[CrispyChick]

Hysterectomy? No. Absolutely not. Given that chem meno is used as a trial for that and it made me worse than ever before (although actually, I feel just as bad now with with my own cycle) - it's a no on that front.

This isn't hormone levels. It's like a severe oversensitivity to hormonal changes. 

[Mary G]

Crispy, I'm so sorry to hear that you are still going through this hell after all this time. 

One question... have you had blood tests to check that your FSH and LH have definitely been closed down properly?  I know you've tried so many different things with chemical menopause etc but I don't recall you mentioning this particular test result.

I'm convinced that something happens to the brain in the lead up to the menopause and it seems to cause different things in different people.  For many it's anxiety (particularly health anxiety) and depression, morning dreads or panic attacks to name a few but for me it was migraine auras.  Things start to happen that didn't happen during your reproductive years. I'm sorry but I can't remember how you were hormone wise pre menopause and if you had any problems with PMS, periods or pregnancy etc.

HRT works well for a lot of women but for others it's not enough and other medication needs to be considered.  I'm still finding out new stuff myself and I only found out quite recently about the importance of closing down FSH and LH production to create a stable hormone environment even when you are very post menopause. This is not your problem I know but I wonder if the reason so many women don't get on with certain types of HRT and particularly Utrogestan is because it doesn't block FSH and LH production and therefore wreaks havoc with hormone stability and makes everything worse.

I wish I could be of moe help but they are just my thoughts.

[DottyD68]

Hi Crispychick,

I am so sorry to read your post. I was wondering if you have tried acupuncture? I see a wonderful lady who specialises in holistic/alternative therapies and have added a monthly session to my "first aid kit" and more frequently when I need it. I really feel the benefit. It maybe a placebo but I don't really care because I always feel so uplifted immediately afterwards. It has different physical effects depending on what is going on in my life at the time - some days I can can feel shattered for the next 24 hours and other times I can feel energised. Worth a try if you can find a good practitioner.

I know it is a long, challenging journey but please don't give up hope. X

[CrispyChick]

Thank you ladies. 

Just no idea how I'm going to survive. Yesterday was another horrendous day. I'm not living, I'm enduring - simply for the sake of my kids.

Mary - interesting about the LH and FSH. So I was tracking them when I started on double cerazette. Chat gpt was guiding me. Within weeks of starting double cerazette my fsh and lh were both held very very low. I had full supression.

Now on one cerazette, FSH is no longer held that low. And, I'm no longer supressed.

But again - it's not the levels that seem to be my main issue. I had to reduce from double cerazette to single because double supressed me too hard, too fast and I was thrown back into horrendous turmoil like chem meno. I also developed agonising pain in my back, neck, shoulders and groin and it has taken a full 6 months to resolve.

So I just cannot win.

Acupuncture - no. Not for me. Tried it once, knocked me out and it sent me hideously dizzy
 for two weeks.

I think sevsitivity is my issue!

So I feel stuck. I feel extremely hormonal this month. And it's been one of my worst for feeling so bad I'd rather not be here.

Don't really know how this leaves me with the idea of just accepting it and moving forward. 

[Mary G]

Crispy, you probably need to see a variety specialists like a menopause specialist, an endocrinologist, a neurologist and any other type of specialist who may be able to help.  I don't know how you are placed financially but you need help and it would be quicker to get it privately.  What type of specialist are you seeing next?  I think you mentioned a scheduled appointment.

You can't just be left like this to sort it out by yourself. 

Is there any chance you could be suffering from a rare subtype of silent migraine?  This has very strange symptoms that don't include headaches and they often go undiagnosed but they are more common than you think and very often start in peri menopause.  You would need to see a hormonal migraine specialist because a GP wouldn't have a clue.

[CrispyChick]

Thanks Mary.

I'm under neurologist.

I'm booked to see a specialist doctor privately who specialise in ME/CFC, long COVID, MCAS, dysataumonia and chronic multi organ illness. It's taken a long time to get an appointment. I need these illnesses ruled in or out. Once and for all. My GP has put ME/CFC on my file. My neurologist says I don't have it. And basically says MCAS doesn't exist.

So that's my next port of call.

Neurologist has given me access to neurophsyc brain retraining. Not really got going yet.

Paid to join the Gupta programme.

Endocrinology refused to see me. They can't help apparently. Gynae meno specialist said as chem meno made me worse - it's not hormones and discharged me.

I can't even get mental health support to deal with the trauma and overwhelm of all this. .

Neurologist is adamant it's all nervous system. I'm trying to buy into this. But he really does t grasp my hormonal triggers. 

I'm now at the end. No idea where I would go after this. I've already paid a small fortune seeing BHRT clinic, gynae and all the herbs etc.

I shall look into silent migraine. DM mentioned if too. But I have these symptoms every single day, but I flare massively with a period. Not sure that fits?

Thank you for trying to help. Appreciate it x

[Mary G]

Crispy, we once had a member who was plagued with migraines every single day.  She suddenly developed them in the lead up to the menopause and didn't have a single clear day.  It can be very severe and the symptoms shift making it difficult to diagnose. Her name is Elizabethrose if you would like to read some of her posts.  She was a brilliant contributor but sadly left MM.

Good luck with the appointment, I really hope you finally get somewhere.  The other specialists you saw sound pretty useless.

[CrispyChick]

Thanks Mary. I'll look.

Now in a new phase of hell. This month has been brutal. I feel so hornonal - mood, stomach, pre periody feeling in uterus. But worst of all is a horrific over stressy, agitated response. 

I can't cope with anything. Nothing. So overwhelmed.

And as I can't take antidepressants - I feel doomed.

Does this part get better...?