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[Tempest]

Hello again everyone. As you may remember I was a member just a short while ago and left to try to get myself sorted out a bit. Some of you may recall that I am 17 months BSO, with TAH previously in 2006. I'm 47.

I was struggling with my first HRT after over a year with none, which was Estrogel. I was using 2 pumps, then reduced to 1 after winding up in A&E with crushing chest pains one morning. Upon examination (treadmill), it was found that I has ST depression in recovery and was referred for a cardiac perfusion scan, which I am awaiting the result of.

The cardiologist advised me to stop the Estrogel completely as I really wasn't feeling good on it at all, and three days later something horrific happened. **Can I just warn anyone who is very easily upset NOT to read on - thank you**.

I went out for our anniversary dinner with Hubby, and half way through our meal it was as if something just 'snapped' in my mind. I excused myself to go to the ladies room, and on the way to the hotel foyer I got an inexplicable compulsion to throw myself from the hotel parapet. I was absolutely terrified, shaking and felt very unwell. I returned to our table after trying to compose myself as best as I could in the loo, and straight away Hubby said 'you look awful! I'm taking you straight home'!

When I got home, I was a mess!! Neither of us knew what else to do, I can actually just remember literally crawling on all fours on the upstairs landing feeling as if I'd totally lost my mind. Hubby suggested I apply a pump of the Estrogel in case it was due to a sudden drop of hormones that may be the problem, and this made sense. This I did, and after about 4 hours I felt a little better but not much. I didn't sleep that night at all.

Next morning, Hubby left for work and after that I literally have no idea what happened. All I know is that I somehow (after the fact) had gone to the closet, hooked two looping belts over a hanger on our bedroom door and tried to hang myself. The door hanger must have broken but I awoke after passing out and found myself on the floor. I literally had no recollection of what had happened at all.

I was in a terrible state, so i called NHS 24 and explained what had happened, and they immediately transferred me to a doctor who then sent another GP out to me, and the first doctor stayed on the phone with me until she arrived. Subsequently, she had me transferred to the Acute Admissions ward at our local psychiatric hospital.

I was assessed by a psychiatrist, dosed with Diazepam and kept for 2 days and nights. The conclusion was that I had suffered an acute 'psychotic break', probably due to a sudden drop in hormones. I was released into the care of the CMHT IHTT team who visited me daily for 2 weeks, and was assessed a further two times by a psychiatrist who concluded that I was not suffering from any type of psychiatric illness, but that I had indeed suffered a 'psychosis' of some kind.

Fast forward a couple of weeks, and I was seen by a specialist at a hospital in menopause following an urgent referral. He was a very pleasant gentleman, and I explained in depth my history and my problems with Estrogel. He explained that this was 'the treatment of choice' in my case as I suffer from multiple life threatening allergies and he did not wish to risk an oral route of HRT, and that he would have suggested Estrodot as an alternative, but there was a supply problem at the moment and he felt it might be very hard to obtain a reliable supply. He urged me to try the Estrogel again, starting with 1 pump per day and I very reluctantly agreed.

I was on the Estrogel for 4 days and actually felt ok after getting over my initial nervousness, when on day 5 I awoke to the most horrendous suicidal feelings. It was literally like I had been 'taken over' by something again! Hubby was at home that morning and said that again I looked absolutely awful!! Hubby phoned the GP, and took me straight to the surgery. The GP took one look at me, and phoned our local CMHT and I was taken down by Hubby to see them for an emergency assessment. I was still feel suicidal at this point, with shakes and deathly pale.

They decided for my own safety that I should be admitted again into the local Acute Ward for observation. I spent 2 nights there, and after receiving yet more diazepam and seeing 2 more psychiatrists, it was again decided that I had had some kind of psychosis related to the Estrogel. Again, it was confirmed that i was not suffering from any type of mental illness. After these 2 nights and stopping the Estrogel, I again felt a lot more like myself and the compulsive suicidal thoughts had disappeared.

This last Friday, I had another meeting with a Consultant Psychiatrist and again he felt that these episodes were due to hormonal fluctuation or imbalance in relation to the use of Estrogel.

To say I am washed out, bereft and don't know what to do now is an understatement!!! It has been nothing short of a complete horror story, and I still very much need hormonal support as I am struggling badly with hot flushes, insomnia and very bad joint pains but I am afraid to try anything else now!

The psychiatrist wants me to have a 'wash out' of 6 weeks so that we can talk again and see how I am then. He is astonished that I hadn't been offered hormonal support sooner following my BSO surgery and feels that all in all, I have been through a lot of trauma in the last 17 months of 'knocking on doors' and asking for help, but getting nowhere. Obviously, he has asked me to NEVER go near Estrogel again!

I would just like to say that this is my own personal experience, and it may be very unusual and I'm definitely NOT putting others off from trying or using Estrogel, as it may be perfect for you. But for me personally, it was a total disaster.

I am now exhausted with all this, and am pondering my next move. Obviously, I am now in a much worse place mentally than ever I was before. Should I contact the Consultant in menopause again directly? Go and see my GP again? (Who has previously been no help whatsoever with my HRT). Pull the duvet over my head and give up? Any advice would be very much appreciated as  really am at the end of my resilience now.

Thank you for reading, and I hope my story hasn't upset anyone. I was a bit reluctant to share as I didn't want to cause any distress or upset to any of you, but if anyone has any sage advice, I could sure do with it right now.

[CLKD]

First of all, have a hug.  Psychosis is sudden.  Usually post natal depression.  Which should improve with hormone adjustment which can be Trial and Error.  I know of someone who jumped from a window 5 days after the birth of her daughter : she had been very ill following the birth of her son, she waited 7 years B4 daring to try again.  It took several months for her mental health to re-balance, I used to look after her daughter in the mornings until Granny came onto the Ward.  This young Mum would hear voices from the waste basket so I would move the basket which seemed to help.

You are not alone.  Is the CMHT visiting regularly, do you have a number you can ring?  I had a Commnity Psychiatric Nurse visit with me and was able to telephone him directly.  It was a good support system, giving me a backup when Husband was at work.

You could try an over the counter pain relief for the aching joints.  Maybe the Psychiatrist would suggest a low dose sleeping pill or Valium on an as-necessary basis a couple of times a week so that you get good quality sleep, I would ring his Secretary to ask the question - this could then be prescribed by your GP.  I assume that you have a follow-up appt. with him, I think that 6 weeks is a long time to wait though ………. I don't think that HRT remains in the system that long.

How badly do the flushes affect you?

Occasoinally patients are sensitive to the fillers/tablets rather than the active ingredient.  I would be interested to know if any of the Consultants have seen this type of reaction …………

This too will pass.  Remember that you can go to your GP Surgery or a Pharmacist if you feel a danger to yourself, MIND have walk-in Clinics - maybe your husband could look into where you nearest is, I found the Charity useful in Jan.; Samaritans are there to listen and also, if you feel desperate, ring the Psychiatrist's Secretary for advice.  We don't bite 

[CLKD]

You could use the 'modify' button to rewrite the title: i.e. 'trigger warning of sudden psychosis reactions' ?

[Riley04]

Oh  Tempest I am reaching out to give you the biggest virtual hug I can.  I am new to all this hrt lark so I'm sorry I can't offer any advice or guidance, but I do know there are some wonderfully knowledgeable people on here.
What I want to say though is a massive well done, you are SO brave writing your story here and bearing your soul.  You WILL get through this and keep knocking on those doors to get the treatment that you deserve.
much love xxxxx

[CLKD]

I remember Dr Kathleen Dalton did a lot of work with girls suffering severe PMT so there is hope out there.  I think she started the N[ational]A[ssociation]for P[remenstrual]S[syndrome] (NAPS).  You may find advice on their web-site too. 

Do keep posting here.  Apart from the very early hours there is usually someone awake! 

Well done on the update of your heading too, I was ages finding the modify button 

[Tempest]

Hello again, CLKD and thank you so much for the hug. I've modified the title of my thread as suggested and hope it makes sense! The last thing I want to do is upset anyone who may be vulnerable.

I actually have a crisis number for out of hours CMHT and can call the Psychiatrist's secretary. They've been pretty good, I have to say. GP was also on the phone last week and spoke to Hubby to do a welfare check. I also have an emergency supply of Diazepam 'in case'.

The flushes are worse in the evening after about 9pm, which I hear is typical. The insomnia is pretty hellish with bad night sweats (I have a fan, and thank goodness it's not scorching right now)!

As for the joint pains, I'm a bit stuck there apart from paracetamol which doesn't seem to touch it. I can't take Ibuprofen or Co-codamol (both on my 'banned list' from my Anaphylaxis Consultant).  I still try to keep active though, which keeps things moving at least!

I'm trying to look after myself in general, by keeping a good diet, drinking plenty of water, no caffeine, no chocolate (triggers my flushes awfully - bummer), and no spicy stuff or refined sugar. Dammit, I could sure do with a large G & T right now, though!!!

[Tempest]

Thank you so much for your kind words, Riley04. It's really very much appreciated.

[CLKD]

So pleased that you have a support network in place.  One thing I never did was leave the key in the locks because it would mean that Himself couldn't get into the house if I was having an afternoon sleep [to pass the time when depressed]  .  Had he tapped on the window to wake me I would have jumped out and back into my skin  .

I didn't have flushes in particular except for an all over 'glow' after my evening bath ……. which could have been hormones or related to the medication I take.

Would pain relief be better in liquid form, might be worth a phone call to the Consultant who deals with Analphalsxis?  Might be worth-while updating him anyway.

Let us know how you get on! 

[Tempest]

Oh, if only I could grab a wee afternoon nap! It would be bliss.

Funnily enough, I didn't have no where near as bad flushes before I started the HRT! Now they are truly vicious. I'm guessing it's because I'm much more stressed now?

My Anaphylaxis Consultant is notoriously hard to get hold of. He is also Professor Of Respiratory Medicine at Glasgow University and it can even take my GP sometimes a couple of months to get a reply out of him with a medication query! The Anaphylaxis Service here covers the whole of Scotland, and comprises 1 Consultant and an Associate Specialist (and I'm afraid to say the A.S. is a bit notoriously eccentric)! We unfortunates who attend it have nicknamed it 'Hell's Broom Cupboard' as it's tucked away in a little nook of the University Hospital building. All of us super allergic types kind of cram in there with a look of haunted dread about our persons, madly clutching our epi pens for dear life. We have to laugh, or else we'd cry!

[dangermouse]

So sorry you've had to go through such a traumatic time. Glad you're here though for support and talking about it will hopefully help you.

As you've had such a drastic loss of hormonal function, perhaps you could ask your doctor to refer you instead to an endocrinologist. The only thing I found scouting about on Google, was that after having everything removed you also won't be producing many androgens, like testosterone where very low levels do seem to play a role in bipolar, for example. By then adding oestrogen, which you probably need, you could have lowered the androgens further as they have an antagonistic effect (like oestrogen and progesterone).

An endocrinologist would be able to study your whole hormone profile and hopefully find the right balance of what you need, which won't drop anything else down to dangerously low levels.

Good luck and stay strong. x

[MIS71MUM]

Hi Tempest

Yes I do remember you as we were starting the oestrogel at the same time.  I'm so so sorry to hear what you have written and want to hug you and make everything alright for you.  I'm not sure if you remember but we both struggled with the oestrogel because of the anxiety it caused and jitters.

2 things that come to mind, you are young enough to try the pill called Qlaria as the cut off date is age 50.  Apparently it is bio identical oestrogen so like HRT in many ways.

Also my problems started last year when I came off HRT, and a lot of what you describe regarding uncontrollable urges ring true with me... I walked around like a zombie and was afraid to be alone.

Secondly there's nothing in the oestrogel that you have an allergy to is there? Is this the cause of the horrible reaction you are having?

Take care and keep posting xxx

[Evelyn63]

Oh you poor soul , that must have been truly horrific Tempest.  The only sudden psychosis I have ever had experience of was post natal related, and not as you would imagine, immediate , but quite a few months later.  There seems to be a definite hormonal link, and I sincerely hope the consultant can offer some help and advice.   I think Dangermouse's suggestion of being referred to an Endocrinologist would be worth pursuing, a different take on the situation so to speak.  Take care, and have a gentle hug.

[Taz2]

How horrible for you Tempest but so glad that you survived to tell us your tale and thank you so much for sharing it as it may help others.  One thing confuses me - you suffered what seems to be an attack in the hotel when you wanted to throw yourself off the parapet but this was before you had used the estrogel so why was the estrogel seen as a trigger?

I wonder if you would like your thread moved to Private Lives so that it is only open for reading by members?

Taz x 

[Annie0710]

Mahoosive hugs to you !
You are one brave lady to have gone through all this and share

I can't offer any advice but really hope someone, somewhere can help you onto the road of recovery


Annie xxxx

[Maryjane]

This may be worth looking into . Serious B12 deficiency can cause all your problems and many more , my husband was heading for a wheelchair and we were even told he had had a stroke for 24 hours long story short , I took it upon myself to investigate got a private B12 test as by then the docs said stress and Vola B12.

I can guarantee a lot of ladies on here are B12 deficient with symptoms , also the NHS ranges are way off a range between 180- 900 is a huge difference as someone with a reading of 200 may actually need to be at 900 for there body.

To be functioning well we need to be at a 1,000 bit atleast a minimum of 550.

Just worth a thought as it brings on phycosis, and many dementia cases are B12 deficiency .