Bit of a personal question..... I am wondering if anyone’s symptoms flare up the week before period? I am in peri menapause so my hormones are wildly fluctuating. I think this may be causing seizures and feeling very unwell. Once my period starts I feel so much better! This has repeated the last few months since my symptoms started. My doctor is keen to give me progesterone tablets but I am worried these may stir up symptoms also!
Does anyone have any experience in this area?! Any thoughts would be much appreciated 🙏🏻
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Yellowfinch
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Who have you seen? Neurologist? GP? Can you see a Gynaecologist? I too have questioned the possibility of this being a menopausal thing, but my GP said that didn’t explain neurological symptoms. (I don’t have nes.) Again we are left with being our own researchers and advocates. There are other conversations on here asking a similar question - worth taking a look at those while waiting to see what other people might think?
That article is very interesting! I have read others that have suggested a correlation between seizures and low progesterone.
My gyno explained the role of hormones in the brain and they are pretty significant. When I presented to emergency once with a pretty severe seizure I was offered psychiatric services 🙄
Once I was assessed the psych said to me you don’t have a mental illness but you need to go get your hormones tested- this also happened to me.
Thank you for reply! I was diagnosed with FND by a neurologist. I have many FND symptoms however they mostly occur in the week before period. I saw my very experienced gyno today who said that it could be the underlying condition (peri menopause) causing the neuro symptoms.
I have researched and there is a definite link between low progesterone and seizures.
I am going to try the progesterone tablets to see if it helps. I am having bloods taken on days 7 and 21 of cycle to check hormones.
I am in Australia. Definitely see a Gyno if you are questioning this also! I believe that it will be the neuro patients who will one day work out this horrible illness.
Not got a lot of time now but I just found an article online from 1995!, from the NY Times reporting on a french (I think) researcher and their work on progesterone as a ‘neurosteroid’. This seems to be a HUGE avenue of enquiry. Hmm. Please do post any links for us all you think might be relevant.
Considering how many 'things' can be triggered in the week to ten days before a period I wouldn't rule it out. That mix and the huge range of symptoms each of us has with FND could be combining to have the hormone fluctuations triggering you to be 'stressed' which all of us know DOES trigger FND.
Though since you asked the question... Thinking back since I had to have a hormone blocking injection ahead of a hysterectomy - my FND symptoms are lessened (though my FMS - ie pain - is worse). You might be onto something there!
Also my gyno said to take a diagnosis of neuro disorders with a pinch of salt. He said often when underlying conditions are corrected they resolve. I think my gyno is in his 70’s and is a specialist in menopause.
Yes I am the same im also peri-menopause but even before I had my son almost 3 years ago my periods caused my symptoms to be horrendous was fine through pregnancy and also feel better when period starts I have wondered for years is my hormones creating havok with this.
It seems we're very similar! I am in menopause (past two years) but for the last three months have had post menopausal bleeding - currently being investigated by gynae... identified a very thin endometrium lining which often reflects hormone imbalance, also recently discovered my thyroid is elevated - more bloods in six weeks. I banged my head and CT, MRI all OK but wonder if pituitary was affected? Sorry, no real info for you ...
There seems to be a strong correlation. When I have a bad day I take 2.5mg of diazapam (Valium) this drug affects the GABBA in the brain. When I have it I feel normal again. My gyno explained to me that low progesterone effects the GABBA in the brain. I am hoping that bio identical progesterone will get rid of my FND. I will let you ladies know how I go.....
Hi I was previously diagnosed with MS now FND but yes I had awful problems. My gp suggested the marina coil until the end of menopause. It stopped my periods completely and was brilliant. No nasty side affects from HRT either
I'm very ill the week before, mostly with migraines, stomach issues, nausea and anxiety. I was much better post partum until my periods returned. Since that time things have gotten worse and now I'm struggling a lot (peri too).
I'm Post Menopause almost 3 years. My 2 year Peri menopause was a nightmare came on at 45 years after emergency surgery for dying from peritonitis & abdominal sepsus.
I'll be honest I'm very happy I've been 'period free' almost 3 years as I was at my worst every month. All my pregnancys made my symptoms/conditions better bizarrely enough. I believe that hormones fluctuating make FND go nuts & FND makes our hormones go nuts. I barely notice my menopause due to how mentally & physically unwell I am & get. I know my oestrogen is low or virtually gone but I declined HRT years ago as I'm done with all the pills & their side effects. Get your hormone levels tested, but try to just embrace the change naturally with natural supplements & foods.
I am so sorry you have gone through such a difficult awful time. I think for a lot of us FND is strongly linked to hormones. I am starting bio identical progesterone for peri menapause. It is meant to be more natural and have less side effects. Have you considered this? I really hope it works as I am a total mess the week before period. I have seizures and cannot function at all.
Hi Tinygianthuman- I also have FND and am perimenopausal . In the last 3 months my seizures have came back and are much worse than ever they were before . I am on a HRT tablet which is 2 weeks estrogen only than 2 weeks estrogen and progesterone- it’s called femoston. I noticed that the seizures are particularly bad just before my period so I got a full menopause hormone blood test done at Randox and results showed today that I am very low in progesterone so I’m going to approach my doctor to see if I can try adding more progesterone to see if this helps. Have u had similar issues?
(I'm not sure if I replied in the right place before, sorry Oh wow, I need to explore this some more. Thanks for the Randox suggestion... so do you take a test just before your period is due? I haven't done any testing yet (still waiting for my appointment at the Rosa Burden centre...) so have no real clue what's going on. But every month it goes on, I'm convinced that it gets a lot worse during my period, and that it must be hormonally influenced at least. I am lucky in that I don't get seizures, I have tics and trouble walking, and have developed a stammer and speech issues that definitely gets worse when I'm around people and also during my period.
Have you had FND for a long time? Mine only started in February, although I had movement issues during therapy before and have always had really severe social anxiety, so can see the shadow of it in my life leading up to this...
hi there thanks for replying… yes you d be best to book in a day or 2 before you are due on . I was wrongly diagnosed in 2008 with a brain stem stroke and the neurologist called my episodes brain stem attacks. All his patients were reviewed in 2019 (Dr Watt Royal hospital Belfast) and they then said it was FND . I’ve been really symptom free since 2018 apart from a bit of dizziness and right sided numbness and numb top teeth every month when I’m due on but since the 4th May this year the seizures have came back and when I’m due on they are so much worse and prolonged . Are u perimenopausal?
I’ve not got any obvious signs yet… and still have regular (albeit longer) periods so I’m not sure. My doc tested my bloods back in Feb and said there were no obvious markers, but I gather it’s not always as easy / obvious as that?
I’m so sorry you were incorrectly diagnosed, that must have been incredibly scary for you. Also sorry to hear things are coming back again with a vengeance now… that must be really difficult for you.
Oh wow, I need to explore this some more. Thanks for the Randox suggestion... so do you take a test just before your period is due? I haven't done any testing yet (still waiting for my appointment at the Rosa Burden centre...) so have no real clue what's going on. But every month it goes on, I'm convinced that it gets a lot worse during my period, and that it must be hormonally influenced at least. I am lucky in that I don't get seizures, I have tics and trouble walking, and have developed a stammer and speech issues that definitely gets worse when I'm around people and also during my period.
Have you had FND for a long time? Mine only started in February, although I had movement issues during therapy before and have always had really severe social anxiety, so can see the shadow of it in my life leading up to this...
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Oh wow, I need to explore this some more. Thanks for the Randox suggestion... so do you take a test just before your period is due? I haven't done any testing yet (still waiting for my appointment at the Rosa Burden centre...) so have no real clue what's going on. But every month it goes on, I'm convinced that it gets a lot worse during my period, and that it must be hormonally influenced at least. I am lucky in that I don't get seizures, I have tics and trouble walking, and have developed a stammer and speech issues that definitely gets worse when I'm around people and also during my period.
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