Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Gilla999]

In a really bad place of protracted severe insomnia since the start of May. I've had two days of feeling normal / myself since April 29th. Unable to work or do basic tasks. Anxiety from the sleep deprivation is overwhelming, constant tremors and uncontrollable crying. I take a whole raft of sleeping meds every night anyway (including valium) and nothing is working this time. Last night I unintentionally overdosed the amount of different sleeping pills I took and ended up vomiting as a result. I was initially having my really bad immune system / histamine reactions to the patch, reducing it didn't help and neither did increasing. Tries switching to Elleste solo for a few days and that was even worse. Went back to the Evorel this morning. No idea if it's too high or too low or nothing at all to do with my hormones.

I live alone with no friends or family nearby. Just in a really, really bad place and can't see any way out of it this time. Could do with a hug 

[joziel]

Hi Gilla, I'm so sorry. I do know exactly what you're going through as I've been there. Things are a little better for me now but I still go through many days at a time when I can't sleep and it's truly debilitating and life-altering.

But do you have any blood tests to go on here? It is very important to try to get HRT optimised...

I have similar symptoms to you and my Newson doctor says we need to try to get me between 450-650pmol. This is not something most doctors would think about trying or feel able to do, they just want to get you off rock bottom and then expect you to feel great. Or they are happy to increase but only to the max licensed dose, which often isn't enough to get us up there.

So I'd really encourage you to go to a private menopause clinic, if you're not already. I see Dr Jane Robertson at Newson Health and find she is great. It just gets to the point where you need the help... It's thanks to her I was able to trial up to 12 (TWELVE) pumps of gel which hasn't got my levels up(!!), and I'm still symptomatic - so I'm now probably going to try Sandrena. Got a phone appointment with her tomorrow.

But there's nothing like knowing you have access to the help you need and someone who is really looking out for hormones. Testosterone is also very important for sleep and can make all the difference. I made a FB friend when I found another woman who was getting brain zaps at night and jerking awake and had inner tremors - and all that went for her when she started T. Are you on T? You won't get that easily on the NHS either. Hope you get the help you need!

[BermudaQueen]

You’re not alone on here, am so sorry to hear you’re suffering… I can’t imagine long term insomnia, it must really drag you down…

I know you take medication, but have you tried any other therapy? 

[Gilla999]

Thank you Joziel, I massively appreciate you taking the time to reply. I'm still ovulating every month (I only take a very small HRT dose) and my day 21 Estrogen levels are quite high..  around 700 (the NHS top of the range for day 21 is 800 ish). But for the last four years I seem to have developed some kind of immune system response to my own hormones that triggers whenever there's a change to them, in any direction. Which as you can imagine happens a lot when I'm still ovulating! Initially I had six months of very severe urticaria, but once that eventually faded it left me with severely itchy eyes, ****ly sore skin and racing heart/palpitations, which is normal during an allergic reaction, but of course then makes it impossible to sleep. And then I seem to get into a negative spiral with the sleep. I'm under the care of a lovely NHS meno doctor (Dr Susie Unsworth) who is very open minded and helpful, but completely stumped with what is going on or how to help me. There is some research on having an allergic reaction to one's own hormones, but it's very rare and not understood, so I'm sort of just left suffering.

I don't take Testosterone but I know my levels are quite low, maybe that is something I could look into. Even when I do sleep, I feel utterly exhausted every day.

Honestly it just helps to have some support here and a virtual hug, as going through it alone is so hard and chronic sleep deprivation really is the worst thing in the world x

[Gilla999]

Bermuda Queen, I've had talking therapy in general in the past and the lady was lovely, but nothing really helps with sleep, especially when it's being chemically induced, either due to hormones or an allergic reaction. Thank you for the support, I really do appreciate it xx

[CLKD]

   at least your gut cleared all the medication from your system.

Do ask your GP for a referral to a sleep clinic.  Knowing that we aren't imagining symptoms can help hugely!  Regardless of a sleep habit at night: i.e. switching off gadgets/blue light which keeps the brain active; or using meletonin products [which your GP could prescribe ]; if 'valium' isn't working to help you drop off, then don't take it again.  It is a relaxant and used as a pre-med. so should work.  One can try too many products which may interact with each other with little benefit.

I read very recently in an article about sleep problems, that a cup of hot milk [ ] can induce a good sleep habit. I remember Mum used to drink 'horlicks' every night!   

I find a warm bath with cuppa and very good book helpful.  If I have a night when I don't drop off, that's usually it but is very rare these nights.

What's your job?  When I had a busy job I had 8 years of not sleeping properly, though about 6 years in I decided that not sleeping hadn't killed me yet, nor did I make mistakes in my job ...... after that I slept a lot better.  Even now sometimes I wake to see whether I have been asleep  .  I do have busy dreams that leave me knackered by morning!

Gillla999 - low oestrogen can cause the body to become dry: inside and out; eyes, deep in the ears, nostrils, vagina ......... how were you during your menstruating years, surely an 'allergic reaction' is more likely to be become problematic earlier? 

If there is a Research Study then mayB join in?  Perhaps let us know who is doing such a Study and who is funding it? 

Do U have an exercise regime?  Walking, swimming, cycling can kick in endorphins which can help tire the body and brain.  Apparently 

Also getting into the sunshine which can help if VitD levels are topped up.  It is also good for relaxing - listening to the birds, watching for insects etc. is good anyway. 

Also do check your diet because some foods take longer to digest which may be some of your problem.  Sleep deprivation is wearying.  Literally!

[joziel]

Gilla, it sounds like histamine intolerance or MCAS. Have you fully investigated that? Dr Tina Peers is the expert - you can google for her site, and there are many YouTube videos and interviews with her and I highly recommend you check it out...

There are things that can be done to help, meds and supplements and careful use of HRT. Dr Peers also offers online consults I believe. It is not an area many doctors know much about yet. But it relates to hormones and estrogen can make it worse... which doesn't mean you can't use it just that you need to take some measures...

[CLKD]

How can our bodies suddenly become sensitive to natural hormones  . 

[Gilla999]

CLKD, I would love to know the answer to that question; it doesn't make any sense to me either. I do know that the allergic reaction started at the time when my cortisol levels completely plummeted, and that cortisol is a major influencer of the immune system, so whether it has anything to do with that I don't know. No one knows why my cortisol levels are so low - I'm 2 points off a diagnosis of Addison's Disease, they're that low. But because I'm not in that bracket, no help has been offered. Have tried all the supplements, nothing increases the levels.

Yes Joziel, I'm very aware of histamine intolerance and know of Dr Peers, but I don't really fit the classic HI pattern... what I eat makes no difference and I can be fine for days or sometimes a couple of weeks, it's not present all the time and the allergy only seems to get triggered by hormonal changes. I tried to see someone about MCAS but it isn't a condition that's recognised by medical doctors so there are no treatments available.

Sorry if I sound really defeatist - I'm just exhausted with being passed around in an endless loop from doctor to doctor, with no one understanding why things are going so badly wrong in my body. My experience is that unless you fit a classic defined pattern of a condition, there is very little help available.

Thank you for all the suggestions CLKD, I really appreciate them. I know I'll get through this 'blip' again at some point, I just wish there was the hope of more long term stability! All I've been offered is Zoladex (chemical menopause) by my NHS meno doctor, but I'm so fearful of taking that and making myself worse / it not fixing the issue anyway.

[CLKD]

If your hormones are unbalanced you may well feel exhausted.  Have U been referred to an endocrinologist about the possible Addisons Disease, it may be worth while begin treated regardless of the 'level'. 

[joziel]

Gilla, I sooooo know where you are coming from with all this, I've felt the same.

One more thought, have you had a full thyroid panel run - including T3? Not just TSH and T4 (which is what the NHS do)?

Because low cortisol can often happen alongside hypothyroidism. And one way of increasing it, is to take T3 - specifically to take the first T3 dose early in the morning because it rises (or should rise) along with your cortisol. Many people have fixed low cortisol problems with this, but it would indicate a thyroid problem.

Do you have thyroid labs run? Medichecks do a full panel...

[BermudaQueen]

Bermuda Queen, I've had talking therapy in general in the past and the lady was lovely, but nothing really helps with sleep, especially when it's being chemically induced, either due to hormones or an allergic reaction. Thank you for the support, I really do appreciate it xx

You’re most welcome… yes, I see what you say.

Have any relaxation methods helped, or lavender oils, things like that to relax you?  I’ve always found talking books or podcasts with my headphones on and in bed, very calming.

I hear you when you say it’s hormonal but just wondered if any alternative therapy could at least help you to rest, if not sleep ? X

[Wrensong]

Gilla, I'm so sorry you're suffering like this.  Like you, I'm still dealing with serious, chronic insomnia & it's the absolute pits. 

I will message you quickly about a v good Endocrinologist who should be able to help if you suspect incipient Addisons is behind some of your symptoms:-

my cortisol levels are so low - I'm 2 points off a diagnosis of Addison's Disease, they're that low.

Sending a hug - you are always so grateful & polite to everyone who responds, I'm sure we'd all love to know you are getting the help you need.
Wx

[Blythe]

Massive hug from me. It’s a shitshow. I take l-Theanine and magnesium glycinate at night. It helps. I also take phenergane as and when. Have take most prescribed sleep meds and they nearly all keep me awake with terrors added in for good
Measure. You are not alone.