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[Carinda]

OK, so I've read a lot of posts on the forum about this problem over the last few weeks (particularly helpful advice from a user MaryG), but I guess I'm after a bit of reassurance really that this might sort out itself as my hormones stabilise, or at least its not critical illness LOL. Starting at puberty I had classic migraine, with Aura, vomiting, terrible headaches and those continued on and off, becoming less regular, for a decade. Then I went through 3 decades of the very occassional silent migraine (some of the other symptoms but no headache and often just the aura, then totally fine). They are something I am used to the symptoms of and would get maybe a couple a year.

My menopause achieved officially started in April of this year, and since then silent migraines have gone a bit crazy. Mostly, at their worst, its just the aura for the standard 20-30 mins and occasionally a very very mild almost not there headache and wiped out the day after. At their best, there is just the aura and I get up and go straight after. I had a gap of a couple of weeks in May (had hot flashes during this time), and then the month of June where I had none at all (had hot flashes also during this time). The last few weeks have been lots, every 4 days or so - sometimes a couple of aura minutes and then totally fine afterwards. I am fairly aware of my hormonal dips and highs, or at least of things changing as I get muscle twitching and mood changes and various other things, I am guessing from a bit of reading that these are fluctuations in my oestrogen being a bit higher and a lack of progesterone (which I'm probably causing to be even lower with anxiety and stress). The hot flashes are not present when I am in a period of silent migraines. I have tried looking for all other triggers, using migraine trust advice, and can find none......bar.....anxiety/stress seems to play some factor as I seem to have some panicky feelings leading up to it and lack of sleep. I have never had one on a day I have exercised well, or during exercise and infact during a week long walking holiday I had none. I have tried upping my magnesium, B12 and Coenzyme10, to no effect. Apart from getting stressed about the migraine auras, I feel ok physically mostly. I've read up on Cortical Spreading Depression also - and my Mother had a few years like this with silent migraine.

Can anyone relate to this ?  Has anyone had this and it resolved over a period of time as things stabilised ? I am unable to take HRT, and my theory that its Oestrogen peaks and lack of progesterone seems to work for me, combined with some anxiety triggering them - but I'm prepared to be enlightened .

Many thanks for anyone reading this jumble of symptoms and thoughts. I'd be grateful for any thoughts and opinions of anyone.

[jillydoll]

Hi. 

Just to say, I started suffering migraines when in my late 20s early 30s.
Maybe something to do with the depo provera injection for birth control I had. Who knows.
When meno hit, they seemed to come more often, lasting about three days each one. Very painful and I couldn’t do anything.  Maybe one every month or so.
Then, after my hrt kicked in, they seemed to wane off, but now, I get aura. Often like you say, without a bad head, just a slight headache, and after 20 minutes or so, I’m good to go.
Never had aura before, or silent migraines, but I knew what they were because my dad suffered them.
Hormones play their part in them I think. Also what I eat, often chocolate in my case starting them off especially if I’ve not had any for a while, then eat some.
So in my case, I suppose they have improved over the years, because my hormones are stable being on hrt.
Sorry to read your not on hrt, so hopefully, your hormones, (which I believe are to blame for the majority of the time for them,)will stabilise quickly for you. It really is a nightmare having to suffer the dreaded things. I feel your pain. xx

[Mary G]

Carinda, sorry to hear you are a fellow sufferer from this strange affliction and yes, I can relate to all of that.

I have been suffering from silent migraines from the onset of menopause 18 years ago and you are right, they are caused by unstable, fluctuating hormones.

I have been managing them by hormone manipulation but more recently, they decided to make a comeback so I had a consultation with my migraine specialist who said that I would need some extra help with preventative medication.   Unlike classic migraines, silent migraines (30 minutes of disturbed vision but no headache) do not necessarily improve post menopause.   Cortical spreading depression is what happens during the migraine aura and if hormone manipulation is no longer working (or in your case, you are unable to use HRT) the next best thing is an antidepressant.  The specialist suggested either amiltrypline or venlafaxine - apparently they are the two ADs that have the highest success rate for preventing migraine aura.

I decided to go for amiltrypline starting at 10mg and working up to 30mg but I can go higher if needed.   At a low dose, amiltrypline does not work as an antidepressant.   So far it's been brilliant and I just wish I had started taking it years ago.   Obviously I'm still using HRT (1 pump Oestrogel, 50mg progesterone every day) but now my sleep is fantastic, my blood pressure is very stable and well within range and my digestive system is working much better.   I can't think of a single negative!   

I was hugely reluctant to take ADs (they have had a bad press and too many women are fobbed off with them when they should be taking HRT) but I have found that carefully blending them with HRT has worked very well.   

I asked the specialist why hormone manipulation suddenly stopped working and she said genes and age - I'm 61 and about 15 years post menopause.   Previously I was taking HRT (as stated), Q10, magnesium, vitamin B, vitamin C, vitamin D and 3 x 40mg propranolol every day but it was no longer cutting it.  The propranolol did at least eradicate the postdrome but it did not prevent migraine aura.

I would recommend anyone who is struggling with migraines to give amiltrypline a try.   Obviously it won't work for everyone in which case, there are other preventative drugs to try.

I hope that helps!

[milly]

Another sufferer here, Sunday,Tuesday and again this morning, previously 10 days ago, then 5 weeks before that, no pattern, or reason why.

It’s so frustrating and almost like being held to ransom.

I’ve had silent migraines since my twenties, but they have become more frequent in last couple of years.
Im sure they are probably linked to hormones, even tho I’m well post menopausal I think my cycle is still in there somewhere!

I had an MRI in 2019, all normal, despite years of auras.

I still find them scary and have to be disciplined not to panic, esp when on a roll with them as now.

I have some amitriptyline, I was given them for shingles last year but didn’t need them in the end, so I’m going to try them as a preventive after reading Mary G post.

All I take at the moment is soluble aspirin with lemonade when aura starts, time to try a preventive now I think.

[Carinda]

I just wanted to say a big thankyou to the three people above who have replied. There is a lot of information for me to read through a few times, and internalise before I make a more detailed response, as you've all given me lots to think about. I am truly grateful. Its been really getting me down and its only been a few months. I had an appalling long perimenopause that went on for a ridiculous 10 years, with every imaginable 'symptom' and then I had a brilliant year once the periods stopped - my mood stabilised and I was getting cocky saying how great I felt........ah well. I will be back, and respond to you individually later.

[Zara69]

Me too..history of migraine always with aura from age 17…roughly monthly then tapered off to 3 or 4 a year until age 48…when they became  more frequent, started hrt and had 5 excellent years with maybe 1 a year. Now 53 still on the same hrt but since April I have had loads of auras but often with no pain anymore but horrible postdrome where my eyes are so light sensitive nausea dizzy brain fog ,I feel I’m just waiting for the next aura. I think mine are triggered by spikes of oestrogen as I can never raise my oestrogen without getting auras although I still get them on 50 patch..so who knows? triptans make me feel awful..propanolol couldn’t breathe I think I need to try another prophylactic…it’s awful dreading the next attack and irrationally fear my sight won’t come back ..I know how you all feel

[milly]

I think we need to realise that men also get silent migraines, obv not hormone related with them.
Stress seems to be high on peoples triggers

[Mary G]

Carinda, as you say, it's a lot to take in but please do come back with any questions you may have.

milly, re dosage, I was told to start on 10mg to see if I had any side effects but the specialist said it would take a minimum of 30mg to control migraines.  She suggested titrating up by 10mg each week and the maximum dose is 1mg per kilo of body weight.   Re the hormone trigger, yes, men have migraines too but not as often as women apparently.   Unfortunately, migraine aura can kick off with unstable hormones but it doesn't always stop once hormones are stable again.

For anyone that is interested, we had a brilliant member called Elizabethrose who had the most dreadful migraines so you will find her posts very informative if you do a search on here.   Sadly, she left the forum but if she is reading this and is still plagued with migraines, I hope she will try amiltrytline - it's one preventative medication she didn't try.

[Mary G]

Zara69, sorry, I forgot to say, why not give the amiltrytline a try?   Your migraine pattern sounds very familiar and my specialist said it's very common for auras to suddenly ramp up with age and for no obvious reason. 

[Taz2]

I think we need to realise that men also get silent migraines, obv not hormone related with them.
Stress seems to be high on peoples triggers

Yes my husband gets silent migraine too.

Taz x

[Carinda]

Me too..history of migraine always with aura from age 17…roughly monthly then tapered off to 3 or 4 a year until age 48…when they became  more frequent, started hrt and had 5 excellent years with maybe 1 a year. Now 53 still on the same hrt but since April I have had loads of auras but often with no pain anymore but horrible postdrome where my eyes are so light sensitive nausea dizzy brain fog ,I feel I’m just waiting for the next aura. I think mine are triggered by spikes of oestrogen as I can never raise my oestrogen without getting auras although I still get them on 50 patch..so who knows? triptans make me feel awful..propanolol couldn’t breathe I think I need to try another prophylactic…it’s awful dreading the next attack and irrationally fear my sight won’t come back ..I know how you all feel

Zara, crikey, thats so similar to me and now I think of it my worst postdromes do contain nausea (i've lost a fair bit of weight), brainfog and eyes hurt in light - I had thought that was just from being stressed but I see it now. You are the same age as me too, and also since April have had loads of auras (whats loads incidentally?). They still affect me with fear too, I am trying so hard to not let them do so, sitting breathing with eyes closed and mindfulness was what I was doing a few weeks ago, but I can't totally lose the fear of them. I think I still feel fearful they will produce the full-out migraine and like you, wonder if they will just one day stay with lost vision.
I am trialling LOL a slightly different approach to them - instead of doing my old method of lying in the dark etc etc I am keeping moving physically right at the outset with sunglasses on. The jury is out on the outcome, but I do wonder how much the anxiety and not using up my adrenaline makes them longer/ worse in postdrome. Distraction has always been good for me with anxiety and keeping moving. A few this has worked for, but if my aura progresses in the first 5 minutes (I know for each of us the aura is slightly different, mine starts at a central point then spreads outwards with zigzags, becoming larger and larger over time) I give up and sit quietly.

If you ever fancy personal chat/messaging about it I'm always happy to - though I don't know if thats possible for me as a new member.

[Carinda]

Thank you for sharing your experience Jillydoll.

So in my case, I suppose they have improved over the years, because my hormones are stable being on hrt.
Sorry to read your not on hrt, so hopefully, your hormones, (which I believe are to blame for the majority of the time for them,)will stabilise quickly for you. It really is a nightmare having to suffer the dreaded things. I feel your pain. xx

You have confirmed for me that there is a possibility that this might not stabilise, or at least not for a long time. (I had Breast Cancer in perimenopause, nobody will prescribe me anything hormone related to help on the migraine front). It is at least 'good' to know there are others out there with similar auras and annoyances who are finding a way through.

[Carinda]

MaryG -

Now we come to the very interesting (for me  ) response. Venlafaxine that you raised in your post. I started taking venlafaxine at 30 years old and for years was on a high dose, then I eased off it slowly (personal choice, not medically requested) over the years to what was considered by the GP an 'ineffective dose'. However I couldn't quite get off the final tablet and a half a day due to the horrible side effects. I decided at the start of this year that I'd take the bull by the horns and try to get off it and have managed to get down to literally portions of tablets each day.

Riggghtttt, you see where this is going......

Have I been prone to these for ages in peri and now meno, and they would have been happening except I was on enough low dose ven. to stop them. Its a strong possibility, and so with that in mind, I am going to contact my GP and let them know I am going to slowly increase back up to the amount I was on before starting this self-innitiated withdrawl. I didn't realise they were so effective for silent migraine treatment. Thank you for pushing my thoughts in that direction )

[Carinda]

Hey Milly.....

Another sufferer here, Sunday,Tuesday and again this morning, previously 10 days ago, then 5 weeks before that, no pattern, or reason why.

It’s so frustrating and almost like being held to ransom.

Yes ! I've said the same, I'm scrabbling to get control and look for all possible reasons and keeping a detailed diary, to no avail. I would be interested to hear how you get on with amitriptyline (sp?) if you do start trying it.

[Zara69]

Hi Carinda..how many is loads? Between 2 and 6 a month which might not be considered chronic but with the lost days to postdrome and anticipation of the next attack it feels all consuming at the moment. My auras last at least 30mins and start with a strange feeling that im not seeing properly followed very quickly by the bright spreading zigzags and loss of areas of vision..numb face hands can’t think sometimes can’t find words.. once it starts that’s it nothing I can do to stop it. When it happens at work I sit it out then carry on working as best I can and to be honest I think I recover quicker than when I’m at home and lay in bed..so you might be right in staying active. Over 35 years of this on and off and I still panic I’m having a stroke 🙄 x