Pre menopause - HELP!: Pre menopause... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Pre menopause - HELP!

Suejane
Suejane

Pre menopause symptoms - I have APS, a INR range of 3-4 and am on lifelong warfarin. For the last couple of months I have been experiencing hot flushes day and night. The night time ones wake me up and are really disturbing my sleep so that I am now permanently tired!

Can anyone suggest a natural remedy that might help, or do I just need to visit the doc? I have tried Nytol for sleep but it didn't really make any difference. Thank you.

36 Replies
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HollyHeski
HollyHeskiAdministrator

Hi, cant help herbal but I was put onto clonidine which really helped with the flushes. My menopause was caused by hysterectomy, so went through 6 mths of hello, so know how you feel.

Suejane
Suejane
in reply to HollyHeski

Thanks Holly. Is your dog a Husky? We have a Northern Inuit which has Husky in it's genetics.

HollyHeski
HollyHeskiAdministrator
in reply to Suejane

Hi, she's mainly German shepherd, bred with northern dogs for colour, it was an english breeder in the 80s. She is called a Utonagan, meaning spirit of the wolf. Sadly she had a terribly time for the first 4 years of her life, she was beaten and caged outside for long periods, until the RSPCA rescued her, took 5 months to get her well enough for us to bring her home. She is adorable, the most gentlest dog we have had. We only take in 2nd hand!!

MaryF
MaryFAdministrator

Hi you could ask your GP and or consultant about a prescription for Melatonin but the guidelines for prescribing are strict, one thing I do is to use magnesium oil, in spray form, on a bad night I rub it into the soles of my feet and this really does help. I am also on a natural proresterone cream, however I am not on Warfarin, and all medical doctors know I use it, please don't start on anything without checking first with your GP and main consultant, we are all different and we all have different drug regimes which can make adding in things dangerous if not under supervision. I also walk daily to make sure that I get very good daylight to ease my sleep patterns and also do Meditation files. Bad sleep is very annoying however I find mine is normally driven by flares and then calms down. MaryF

Suejane
Suejane
in reply to MaryF

Thanks Mary, I’d forgotten that a friend bought me some magnesium spray and I haven’t actually tried it. The issue is that the lack of sleep is down to hot flushes and I don’t think magnesium is effective against that.

MaryF
MaryFAdministrator
in reply to Suejane

I understand, for me it is a mixture of things to attack the problem, gently, Magnesium makes me feel sleepy and relaxed if I am unwell, I also use Epsom Salts baths. I hope your GP can help you. MaryF

Things to consider/ask physician/providers about:

Cooking for Hormone Balance has great recipes! The author has an online blog with most of the recipes from the book.

Acupuncture and Chinese herbs (dong quai, ginseng, black cohosh, etc)

Seed cycling (google it for instructions). be generous with ground flax during follicular phase and when it calls you. Grind up the seeds you choose

Vitamin E if ever having hot flashes (400IU)

B complex (methylated, bioavailable; seeming Health is a good brand)

Castor oil packs and epsom salt baths (3-4x/week)

Milk thistle to keep the liver going

Wild yam extract

Evening primrose and/or black currant oil

Small amounts of organic soy 1-2x per week if your body is okay with it.

Yoga a few times per week

Try to sweat once per day - a few days per week of aerobics/cardio (low impact) if can

2-3 days per week of strength training to keep bones strong

Keep having sex/orgasms to prolong if you want. New research linking later menopause onset with continued sexual activity.

Suejane
Suejane
in reply to Lauren2121

Thanks for such a comprehensive reply Lauren. I shall have a proper look at what you suggest. Unfortunately, I already know that some herbs are a no no when on Warfarin - black cohosh for example interacts with it. Being on warfarin is often really frustrating!

Lauren2121
Lauren2121
in reply to Suejane

You’re welcome! If you’re in the UK, Naava Carman is an amazing acupuncturist and herbalist for folks like us. After I was diagnosed my local acu found her bc of her expertise in this area. I consulted with her from abroad and she put together an herbal plan for me that catapulted me into feeling better than ever. She’s really a genius in this area, and was able to navigate which traditional herbs would be contraindicated with our condition. Hope you’re feeling better soon!

KellyInTexas
KellyInTexasAdministrator
in reply to Suejane

Absolutely correct! Many of these things cannot be safely taken with warfarin.

Progesterone is not always safe either. My APS specialist will not approve a Mirena coil in severe patients.

Hi I have been drinking soya milk for two years now and it really helps me if I have stopped hot flushes etc come back. Def worth a try good luck. I have APS warfarin range 3-4

Suejane
Suejane
in reply to Molly100

I forgot to ask, how much do you drink?

Sue

Molly100
Molly100
in reply to Suejane

I have it on breakfast and then 1 coffee in morning and decaf tea x 2 in afternoon. But I also do try and have a small glass during day but do forget sometimes. I stopped it once and the flushes came back with a vengeance. So now I am never without it. The only other things I take which aren't really related are magnesium and calcium/D3. IT was my doctor who recommended Soya and it has been a life saver for me. Don't buy a cheap one though. :)

Suejane
Suejane
in reply to Molly100

Co op do a organic one. I like it unsweetened. What brand do you have?

Thanks so much. I do have soya milk in tea already but will try drinking more. :)

Sorry I tried all the alternative treatments, I unfortunately had to have a hysterectomy at 29yrs. I have been on HRT 17 years. It works so well for me. If I forget to take it, all the horrible side effects SLAM. Llke night sweats, you are pooling on your belly, sheets soaked, can’t sleep hot sweats, nightmares the lot. Makes my memory stupid! Even more than our syndrome... I trust my good GP. and he trusts me. I’m on ESTRADIOL 2MG

. I did start on the 1mg. No side effects for me. I have regular check ups, and doctors and nurses fine with my health on this. My blood pressure always okay, blood tests , I do get occasional the talk, do you think it’s time you stopped taking it? I say why, I’m only 51...

Then okay

Suejane
Suejane
in reply to mariamoo1

Hi, I’m sorry you’ve had a rough time. Do you have APS . Are you on warfarin? I read that we couldn’t have hrt due to the clotting risks. That’s interesting..., I’m going to try all the alternatives, but at least I know now someone else is on it.

You’re still suffering with your menopause after all these years?! I had a hysterectomy aged 37 which as you’ll know, pushes you straight into the menopause. That was in 2002. I took Estradiol until I was diagnosed with APS in 2007. Prof D’Cruz told me to stop taking them immediately and fortunately I have never suffered any hot sweats etc. How long does an average menopause last? I suppose everyone is different?

itasara
itasara
in reply to mariamoo1

I started on HRT just as I was starting to go into menopause. I did it mostly because I am a singer and did not want to lose high notes or have dry vocal cords. I was (I think) in my mid 40s. I took 8 months off last year when I turned 70. It was the worst 8 months of my life and decided with my doctor and not having any major risk factors that I could not stay off it. Not only that my dexa scan results during that time were suddenly not very good.So I decided to take it every other day instead of every day and that has been going very well for me.- no more night sweats or insomnia. My dexa scan after I restarted the pills were better than they were before. Once you stay on it, it is difficult to get off. I should have but did not taper it. BIG mistake. But I feel better on it and have no desire to ever quit. I'll be 72 next month. I hope if or when my gyn should retire, and if I am still around that I'll find another doctor on the same page. There is a change in philosophy these days, but some are not ready to make those decisions.

Suejane
Suejane
in reply to itasara

Thanks for sharing. Are you on Warfarin/Coumadin?

HollyHeski
HollyHeskiAdministrator
in reply to itasara

Hi, can I ask, have you been diagnosed with Hughes/APS Syndrome? I see from your profile you have MS.

I ask because usually HRT is not advised for us, due to our sticky clotting blood, HRT increases our risks.

We are usually prescribed anticoagerants, which can also have contra indications with HRT, supplements and changes of diet.

I say usually, as APS specialist do prescribe in certain circumstances but only once these risks are discussed with the patient.

For me, being triple positive, it was a definite no no after my hysterectomy, I had to go cold turkey and suffered all the symptoms of menopause usually over 5 years or so in 6 months. It was so bad, I couldn't sleep etc or even leave the house!

Once over it, the symptoms disappeared.

Like anything, we always advise discussing medications, supplements and changes in diet with an APS specialist, especially if on warfarin.

Suejane
Suejane
in reply to HollyHeski

Hi holly,

I do have APS, but don’t have MS. I’m on warfarin with a INR of 3-4.

I emailed St Thomas’s the other day to ask dr Hunt what t he ET would advise. I got a call back today from one of the clinic nurses with a message from dr Hunt who suggested HRT patches - which surprised me! But also something called Clonadine?? Which I haven’t looked up yet.

HollyHeski
HollyHeskiAdministrator
in reply to Suejane

Hi, my question was to itasara, sorry it does get confusing following.

Are you Suejane under Prof Hunt as your APS specialist?

It surprises me too that HRT has been advised, Prof Hunt is my specialist too.

It was quite a few years ago that I was advised not to go on HRT, so maybe the guidelines have changed or your clinical review doesn't put you at high risk? You can only talk to Prof Hunt more for reasurance and guidance. There are different types of patches now too.

Clonadine I was on and mentioned this to you at the beginning of your post. Really helped me with the flushes.

I was really lucky too to have a gynecologist who understood APS and was willing to discuss and take Prof Hunts advice.

Suejane
Suejane
in reply to HollyHeski

I do attend St Thomas’s, last time I was there I did not see Beverley Hunt. I’ve had multiple blood clots, so would assume I’m considered high risk, so I was really surprised that hrt patches were suggested.

I’m going to try not to take any more chemicals than I already do, so will keep trying the homeopathic route until I can’t bear it 😀

HollyHeski
HollyHeskiAdministrator
in reply to Suejane

Hi, I totally understand how you feel and agree if theres a homeopathic route, it's always worth trying.

We are not medical advisors on here, so please be careful and watch contra indications on your warfarin.

The soya milk opinion was a new one to me, and your 1st night seemed to of helped, let's keep fingers crossed.

Please don't get to the point that you can't bear it, what works for one may not work for all, so if the flushes effect your quality of life, please try the clonadine.

If you have some success please share, as this is a topic that comes up many times.

x

Suejane
Suejane
in reply to HollyHeski

Thanks Holly, I was just doing some reading about isoflavines, these are natural oestrogen and soy contains them. But as ever, although not conclusive, the usual risk of interaction with warfarin - like there seems to be with practically everything we eat. 😖 I get really fed up being on warfarin. Do you?

HollyHeski
HollyHeskiAdministrator
in reply to Suejane

I'm on daily clexane, aspirin and clopidogrel instead of warfarin, been on this for many years, can't take warfarin at all, totally unstable INR, quite common for triple positive APS.

There's pluses and minuses to all!!

itasara
itasara
in reply to HollyHeski

Hi, I do not have Hughes/APS Syndrome. I do have RRMS which so far has not progressed. I was on HRT years before I found out I had MS, sometime in my mid 40's and I was dx with MS when I was 57 after one symptoms of transverse myelitis.

Go to doc. Herbal remedies are ok but he will have something to really sort it

My doctor had nothing to help just the soya. Doctors dont have anything unless you want hrt.

Suejane
Suejane
in reply to Molly100

I had a couple of small glasses of soya milk yesterday plus in tea and I had less hot sweats last nigh! Placebo?? Let’s see what happens tonight! :)

Molly100
Molly100
in reply to Suejane

That’s great. Also no tea coffee or alcohol! Well they def start me off. Good luck

Suejane
Suejane
in reply to Molly100

Thanks molly, that’s my downfall! I’ll often take tea to bed! I Also love a glass or 2 of wine in the evening!! :)

KellyInTexas
KellyInTexasAdministrator

Oh the joys...

My birth year is 1969 so I’m in the thick of it.

Having 100% all natural , breathable fabrics is very helpful . 100% Cotton loose night shirts and 100% all natural sheets.

I have a very thick memory foam topper to help absorb impact on vascular issues... feels fantastic but I’ve noticed despite a cotton topper, it can trap heat. There is a company in Sweden that makes all natural mattresses out of wool and horse hair- hand made - have been doing it for 150 years. It has a topper. 8 months waiting period for one... can be yours for the small sum of $49,500 🤑😮...

I have a very thin all natural down blanket between two flat sheets.

If it’s colder, a medium weight.

The only thing I can suggest is called Inclined Bed Therapy. There’s a fantastic group full of so much info on Facebook. It can’t hurt you, on the contrary you have everything to gain and nothing to lose. Andrew Fletcher is the brains behind this. He’s a lovely approachable man who wants to help people and indeed that’s exactly what he’s done and continues to do so. Please consider joining the group.

Thank you. How interesting, I’ll take a look. 😀

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