Perimenopause has worsened FND symptoms

[Broganfluffer]

Hi I’m 50 years old and was diagnosed with FND in 2019 after being misdiagnosed since 2008. My symptoms were well under control until I went into perimenopause. I now have bad seizures every time I have my period and milder symptoms throughout the month . I’ve read about links with low progesterone and increased FND symptoms. Has anyone else found the same problem with changing hormone levels affecting FND symptoms.? Any doctor I speak to doesn’t think there’s a link yet without fail every month at that time I have seizures! #progrsterone

[Willothewisp81]

Hi,

I'm so sorry to hear that the doctors are not listening to your experience and that it has become so difficult to manage.

I am at the beginning of the perimenopause and I can say without a doubt that my FND symptoms get dramatically worse just before and during my period. My best time symptom-wise is the week after my period. I'm finding it really hard as the perimenopause is causing my periods to be less regular and often closer together so it is difficult to track and predict when the worst symptoms will flare up, and the good period is getting smaller.

Like you I had been doing really well managing my symptoms and now I feel pretty freaked out. I have spoken to my GP about it and she was not dimissive thankfully but she also didn't have any answers other than trying HRT. But without any proper research or guidance I don't feel like I want to start playing with my already highly reactive system and body so I'm holding off at the moment.

I have thought about getting an assessment from a private menopause clinic but although they seem to have extensive knowledge about the menopause (which my GP does not) they do not seem to have any knowledge of FND and it's not cheap. It feels like a huge hole in knowledge and research.

I wish I had something reassuring to say but you are definitely not alone.

[Broganfluffer in reply to Willothewisp81]

Hi Willothewisp81 ! Yes my best week is the week after my period too!! I definitely think it would be worth getting your hormone levels checked . I went to Randox and got a menopause hormone blood test done and it showed my progesterone levels were extremely low - actually in the post menopause category so armed with this and the research I found I approached my gp again and she has now agreed to let me try a different HRT tablet with bio- identical progesterone in every tablet 🤞

[SEWart]

I know this doesn’t seem like a lot of hope now, but my symptoms got much better once was in full menopause. Trust your gut and lived experience

[Broganfluffer in reply to SEWart]

The sooner I’m there the better then!! Thanks for the heads up x

[Badagain23 in reply to SEWart]

Hi hun. Thankyou that's good to know there might be light at the end of the tunnel. I have 2 weeks where I'm not quite as bad and like this week 2 weeks which can be horrendous. Can't function. Hormones are the bane of my life !!! Hrt will probably just confuse things . Thanks for your comment x

[210272]

I know hormone interactions are fairly well understood in migraine and in some vestibular/neurovestibular conditions but didn't know there was a link with FND/seizures although it makes sense that there is. Can you take the papers you've seen with the info about progesterone to your GP so they can get a better understanding of what you're going through? Also - and only if you have enough spoons - what were your previous misdiagnoses, if you don't mind me asking?

Hope you get the help and support you deserve soon

[Broganfluffer in reply to 210272]

Yes I printed them off and offered to show them to the doctor today !! but she took me at my word and is letting me try a different HRT tablet with bioidentical progesterone in the tablet every day of the cycle instead of the combination HRT I was on with synthetic progesterone 2/4 weeks. I read that you need bio-identical progesterone for it to work so I’ll keep this thread posted over the next few months how I get on.

[Broganfluffer in reply to 210272]

Hi there I was reading back over this thread and realised I didn’t answer your question about previous diagnosis. My symptoms started after a minor car accident where I had whiplash in 2008 . I also previously had vertigo but my neurologist decided that what I was experiencing was due to a brain stem stroke caused by the car accident where tissue broke away and caused a blockage. He said the symptoms were called ‘brain stem attacks’ but treated me for 11 years with various anti epileptic medications, changing brands and upping strengths many times as in hindsight they weren’t effective as my seizures weren’t electrical. He never did an EEG at any point. He was then investigated and all 3500 of his patients recalled in 2018. I was taken into hospital and a ( day EEG performed which showed no electrical activity despite having seizures. After that I was diagnosed with FND and sent home with a leaflet saying what it was! I actually had a better quality of life the next 4 years as I wasn’t as groggy from meds until perimenopause hit !!

[210272 in reply to Broganfluffer]

Hi Broganfluffer,

I remember that recall and gather that a lot of his patients had had similar experiences to yours so I hope you all got good compensation for all those years of mistreatment. It was good that his patients with FND finally got accurately diagnosed but I'm aware that several people with rare neurological conditions (I had one but am now in remission, thank heavens) also got labelled with FND in the process. Picking up vague psychiatric labels happens a lot during our diagnostic odysseys (or even after them) and this can make these odysseys more complicated and traumatic than they need to be and delay access to appropriate treatment.

Hopefully the treatment you get for perimenopause will help

[LEEJUNFAN]

Hi there,Well I can definitely say for sure, that my wife, who has had FND since 2012, has worsening symptoms during her periods.

She's now 44 and I've had her do a few blood tests at her GPs to see if she's ready to come on the menopause, but she isn't.

I'm glad that this discussion has come up, as we've always wandered how her symptoms will be when she's on the menopause, especially as her symptoms such as shaking and tremors worsen on her periods.

She's dreading it and so am I, but I'll always be here for her through it all.

My heart and respect goes out to you all.

FND is so devastating.

Best wishes!

Tony 👍 👍

[Broganfluffer in reply to LEEJUNFAN]

I’m starting a new bio-identical HRT tablet called Bijuve 1mg/100mg with bio identical progesterone everyday so I’ll let you know how that goes

[LEEJUNFAN in reply to Broganfluffer]

All the best with it.👍👍

[JPAP]

I have been taking hrt for a while now and my FND symptoms are not as bad. I have less seizures although that could also be because I am managing my triggers better with breathing and meditation. However when I do get a seizure it is bad afterwards I’ve noticed and it will take me about 2 weeks to recover to my “normal”

[Brokendeer]

Hi I read somewhere that perimenopause and menopause affects the heart function as the hormones decline, some women more than others.

And of course periods affect the heartrate if you experience severe pain and blood pressure gets affected too.

Seizures - I always thought were when the brain could not cope with some chemical mix, pain or pressure?

So maybe worth just getting a heart M.O.T as well as trying the new HRT to be on the safe side.

Look for the calm in the Storm!

[Broganfluffer]

Hi brokendeer . Thankyou so much for your advice although my pulse and blood pressure have always been very normal and I have next to no pain with my periods so I don’t feel like my heart is put under any additional pressure during this time but I will certainly mention to my gp as you say, just in case x

[tinygianthuman]

Hi Broganfluffer,

I just thought I'd pop in an update on your thread here as I was hoping that I was in peri-menopause as my symptoms definitely get worse during my period. Unfortunately after spending about £500 in blood tests and private menopause doctor appointments it seems that my hormone levels (and vitamin D) are in fact totally fine. (I went to the online menopause centre in the uk as recommended by a friend)

I'll admit I am a little depressed by this news, as I was sure it was linked, and was really hoping that HRT could help me... but I guess it was worth the investigation.

I have been given the option to keep trying the bio-identical progesterone cream that I've been trying for the last 2 months (although I did see some slight improvement in the first month, I've just been through my second cycle using it and symptoms are still bad). But I think I'll keep using it for a few more months to see if I notice any improvements (I had to pay £100 for the bottle so I figure I may as well ;).

Anyways, I hope you're HRT keeps helping, as I'm still convinced that hormones are linked to mine in some way... even if not directly with reducing levels

[Broganfluffer in reply to tinygianthuman]

Hi tinygianthuman - just to update you I’ve been in the Bijuve HRT (which has a highly dose of progesterone than other tablets ) for 9 months now abd have been seizure free all that time apart from 1 when I was in my first 3 weeks of starting. I’m back working 7 months and leading a normal life again. I still have slight lightheadedness and slight right sided numbness at the time of my periods but nothing compared to the terrible trembling seizures I was taking from May -July last year. I also take vensir which is for anxiety and although I’m not generally an anxious person I definitely think it helps me keep very calm and composed when I do take symptoms. Hope you are doing well too x

[tinygianthuman in reply to Broganfluffer]

Aaaah, that is so kind of you to let me know, thank you! I also went ahead and had the mirena coil fitted (progesterone) , and started on oestrogen too, as my doctor heard how convinced I was that my symptoms were at least in part due to fluctuating hormone levels. Been on it now for 4 months and likewise, have seen an improvement. Nothing magical for me, but absolutely a lot better. I’m so pleased it’s been such a success for you!