Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Mav196 on July 05, 2017, 01:36:07 PM
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Hi everyone
This is my first post and I am in total despair - I am truly hoping you can help me. I am 47 yrs old and 2 yrs ago I began to experience rapid and diffuse eyebrow hair loss and loss of hair on forearms. A dermatologist concluded it was probably Alopecia, I also went to an Endocrinologist for a full hormone work up which ruled out any underlying thyroid or autoimmune disease. After 6 months or so the hair loss stopped but it didn't regrow. Fast forward to last year and literally out of the blue I was hit with daily unrelenting headaches and debilitating daily dizziness. An ENT ruled out vertigo, a Neurologist concluded based on my age and the fact that I am female this is chronic migraine due to perimenopause. Prior to this I have never suffered from headaches nor migraine. I have tried and failed a beta blocker and Amitriptyline and I am now tapering off Gabapentin due to some awful side effects. The same Endocrinologist retested my hormones recently and said she would struggle to label me perimenopausal. My cycle has started to fluctuate to 25, 26 and 27 days and the most recent symptom is now vaginal discomfort and dryness, I do not have any hot flushes or night sweats. I literally don't know where to turn next - I have been unable to work or drive for the last number of months. I have listed my bloods below and would be grateful to hear your thoughts as to whether this nightmare is as a result of peri and whether I should seek a gynae consultation.
Estradiol - Day 4: 191 (77-921 pmol/l)
Estradiol - Day 15: 454 (139-2382 pmol/l)
Estradiol - Day 20: 907 (77-1145 pmol/l)
Progesterone - Day 4: 1.0 (0.3-0.95 nmol/l)
Progesterone - Day 20: 50.9 (3.8-50.6 nmol/l)
FSH - Day 4: 12.0 (3.03-8.08 IU/L)
LH - Day 4: 3.0 (1.80-11.78 IU/L)
Thanks so much
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Hi couldn't just pass without welcoming you to the forum.
We have some very knowledgeable members that will be along soon to help.
Elizabethrose in particular is our migraine expert (although she doesn't want to be ), she will be able to understand what you are going through.
You will find lots of help and support here.
Mrs Brown
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Thanks sparkle and MrsB for your support. Hopefully someone will come along who can interpret the bloods and symptoms for me. My life has literally fallen apart in the last 10 months and every specialist I have gone to has a different opinion.
Thanks
Mav
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Hiya
I can give you the medicheck ranges if they're any help
17-BETA OESTRADIOL
Ref Range: Follicular 98 -571 pmol/L
Ref Range: Mid-cycle 177 -1153 pmol/L
Ref Range: Luteal 122 -1094 pmol/L
Ref Range: Post-meno < 183 pmol/L
LUTEINISING HORMONE
Ref Range: Follicular 2.4 -12.6 IU/L
Ref Range: Mid-cycle 14.0 -95.6 IU/L
Ref Range: Luteal 1.0 -11.4 IU/L
Ref range: Post-meno 7.7 -58.5 IU/L
FOLLICLE STIM. HORMONE
Ref Range: Follicular 3.5 -12.5IU/L
Ref Range: Mid-cycle 4.7 -21.5 IU/L
Ref Range: Luteal 1.7 -7.7 IU/L
Ref Range:Post-meno 25.8 -134.8 IU/L
I think they are struggling to label you as perimenopausal because your cycle lengths haven't shortened much or become irregular, and without any hot flushes. That doesn't mean you aren't suffering from symptoms though, you might well be in late reproductive stage.
I'm sure you'll get some good advice on here from more knowledgeable ladies though.
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Thanks nearly50.....I am almost demented trying to find the underlying cause of this....it seems that the drugs given by the neurologists are really aimed at treating the symptoms rather than the cause...it is so disappointing and the impact on my family and work life has been truly devastating.
I look forward to hearing from lots of posters here - I bet their knowledge and experiences will be far more informative and accurate than any doctor I have seen in the last 10 months!!
Mav
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Hi Mav welcome to the forum, it's lovely to have you join us.
I've just read your post and feel desperate for you; migraine is so very difficult to cope with. I have had a long and brutal battle with it but have to say I've come through the other side which is exactly what my specialists suggested would happen once through a natural meno. I'm nine months since my last bleed so very nearly there but the migraines have already dramatically diminished in intensity and frequency.
The great difficulty with bloods is that in peri you can get a different reading every month they are done. You've offered one months example, have they only done one months worth? The other great difficulty is that despite what some of the well known studies like SWAN conclude, women manifest early peri differently so it is very difficult to really distinguish between late reproductive stage and early peri. The sudden onset of migraine, vaginal discomfort and dryness is a good indication that early peri may have started for you. Flushes and night sweats often start much later and sometimes not at all. In my early peri I was getting regular adrenal surges through the night without the flushes: enough to wake me and leave me awake for hours. I found that the night flushes came when my oestrogen plummeted before a period.
Before I make suggestions to try to help, would you mind if I ask you some questions?
Did you suffer with PMT, painful periods? Are you aware of ovulation taking place with mid cycle ovulation pain? Do you have any awareness of your vaginal mucus changes through your cycle? Do you suffer with breast swelling, bloating at points in your cycle? Any anxiety/depression and can you pinpoint it to particular times in your cycle? Have you ever kept records of your cycle and symptoms experienced including the migraine? Who have you seen i.e. what specialism's? What meds have they prescribed for you? What has been done to try to treat the migraine aside from the three prophylactics you mentioned? Do you use any acute meds? Do you medicate the headaches/migraine, if so how frequently? Are there any particular things you recognise as triggers for the headaches and truly, how frequently are you getting the migraine? Are the migraine accompanied by aura either visual or other? Do you find they respond to medication? You mention work, how stressful/demanding is it? At what point in the day does the migraine first manifest itself?
Sorry, so many questions, but I'm trying to build a picture of what's been tried. I can analyze and maybe offer some suggestions but don't want to do this without knowing what you're dealing with and what's been done.
I really wish you well and would be happy to help in any way I can. Ponder the questions and do ask if you need help answering them, we are all able to read our bodies differently. I'm really trying to establish how hormonally sensitive you've been throughout your reproductive life as that can paint a picture for us of what lies ahead but can also help us analyze how to treat what's happening. I'm really no migraine expert but have far far too much experience of dealing with the pesky things and have seen some very well regarded specialists so may be able to pass some hot tips on to you.
I send you all good wishes x
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Hi Elizabethrose, thank you so much for your post and for offering to help me try to figure this out. From an early age I always had agonising periods and so I spent my 20s and 30s on combined birth control pills. In the latter years and up to 2015 I was on the mini pill. In Aug 2015 when I went to my GP with eyebrow and forearm hair loss he told me to stop the pill as it can sometimes trigger Alopecia. So since then I have endured terrible periods - the flow is heavy but bearable but the pain is awful...it feels like I am constipated but I know that I am not - it's like poker pains that literally take my breath away and makes me feel faint....the trapped gas feeling lasts for up to 3 days after the flow stops. The chronic headaches and dizziness started one day abruptly in Sept of last year and for 2 months I was told it was vertigo of inner ear origin. Subsequently I was diagnosed with chronic migraine - between Nov and Jan I tried and failed Inderal and Amitriptyline. I had to wait until April to see my current neurologist and so between Jan and April I kept a diary to see if there was a pattern with my cycle. Looking back over it I can't find a pattern - there is no consistent link with ovulation or menstruation for example last month I wasn't any worse on my period but this month I was crippled at Day 21 and on my period. I have a chronic headache all of the time and then I have days that are much worse - the pressure in my head is almost unbearable and it makes me dizzy. The pain has changed over the months - initially it was a specific point on the top left of my head punctuated by zaps (like when you are on an aircraft and it drops altitude suddenly) and dizziness. Then it muted down to a constant dull, brain foggy hangover type and then it ramps up to a tightening pressure and my eyes feel strained and out of focus and I can barely concentrate. I don't have a throbbing/pulsating headache that people talk about nor do I need to lie down in a dark room -The dizziness is not a feeling of spinning - it's like a dizzy feeling inside my head.
In the early days of this I tried paracetamol, ibuprofen, codeine, migraleve, excedrin but they didn't touch the pain and so I stopped taking them as I was aware of rebound headaches. I also tried Sumatriptan on 2 occasions and both times it made the pain worse. My current neuro prescribed Gabapentin and wanted me to ramp up to 600mg twice daily, when I got to 400mg twice daily my head pain was reducing but I felt spaced out for most of the day and I started to experience bladder discomfort. He told me that he has never heard of Gabapentin causing these type of side effects!! But he agreed I should titrate slowly down off them so I am at 500mg total daily at the moment. He then wants me to go on Epilim (valproate) but I have read that a very common side effect of Epilim is hair loss and so I sent an email to his office asking for an alternative.
In relation to triggers, I am demented trying to figure that out. In the first two month of this I was extremely nauseated from the pain and dizziness and barely ate at all, when my appetite returned I cut out caffeine, chocolate, cheese , alcohol etc but it didn't make a difference. I have been on sick leave from work since last Sept and so there is no work stress in the mix either.
In relation to what time of day the migraine manifests - every morning when I am lying in bed just after waking up it feels like there is something moving/tugging inside my head and I think oh no it's going to be a bad one. But 9 times out of 10 when I get up initially it's not as bed as it felt in bed......it progresses as the day goes on. Other times the minute I get out of bed I know it's going to be a bad one.
I am really struggling to accept that someone who has never suffered headaches and migraine could just wake up one day and be so severely affected - I am barely functioning. I can understand a previous migraine sufferer evolving from episodic to chronic but for this to happen out of the blue? Mind boggling!!
Thanks so much for your help an support
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Elizabethrose despite my very longwinded post above I forgot to answer your question about how many days are actually migraine days. To be honest it's hard to say - I have not had any pain free days since 14th Sept last year it's literally been a constant headache which is either dull and blunted or an intense pressure feeling - both types are accompanied by dizziness - not spinning sensation but more like a drunk dizzy feeling accompanied by brain fog and difficulty concentrating. The worse days are just random - sometimes at my period but other times it's just random - last month days 14, 15, 20 and 21 and this month Day 2 and Day 6 were awful. My least worst time so far has been on Gabapentin 700mg daily - pain was bearable but not completely gone, dizziness was minimal but bladder discomfort was constant.
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I feel so sorry for you sweetheart, what an absolute nightmare! If it's any consolation to you, this will stop, menstrual migraines do.
I'm completely familiar with all you've tried and the neurologist has done what neurologists do. Beta-blockers are used very successfully to manage the severity and frequency of migraine, as is Amitriptyline, which they know has an affect on serotonin, which is considered to play a part in the migraine process. Gabapentin is also very commonly prescribed to treat migraine along with other anticonvulsants: I tried Topiramate. Interestingly, dizziness, lightheadedness, tiredness drowsiness, blurred vision, coordination problems, frequent urination, urinary retention and cystitis are known side effects of Gabapentin. Could this therefore account for your bladder discomfort and spaced out feeling? As far as I know all of the anticonvulsants have wide ranging side effects, which can be more difficult to handle than the symptoms they are treating but saying that, we are all different. I reacted very violently to Topiramate but there is another member on this site (it might be Rockhopper??) who uses it successfully. Incidentally, Topiramate caused me hair loss.
Let's talk about how migraines manifest themselves. Pure menstrual migraine are classified as only occurring between -2 +3 days of a menstrual cycle and at no other time, these are apparently the most difficult to treat, they are usually without aura. Menstrual migraines are those triggered hormonally at any time of the cycle. I started with pure menstrual migraine at the start of peri but they gradually morphed, as migraines tend to do and started occurring at every change in hormone level. You have talked about how your migraines differ, how they evolve. Menstrual migraines have a terrible tendency to rebound i.e. they respond to meds or just naturally diminish but then leap in again and start to build. This could be what is happening to you.
Again you mentioned that you don't get the classic pulsing pain that is so commonly used to describe migraine. I think our responses to migraines are all very individual. I've never had one-sided pain, which is very much the norm: my pain is crushing everywhere. Your description of the changes in each migraine very much fit the description of how the migraine moves through its stages. Do you know about the stages of prodrome, aura, headache, resolution and postdrome? I will attach some links at the end. What you have described about how your migraines change exactly fits the stage transition. As far as not being trapped in a darkened room, that is something to be eternally thankful for despite the rubbish you are going through. Are you light sensitive though, do you feel more comfortable being away from direct sunlight or bright flashing light?
As far as triggers are concerned, it can be hugely difficult to identify them, especially if your main trigger is hormone change. This is where your diary is worth its weight in gold. We are all very different and triggers are very individual. The ones we so commonly hear about chocolate, cheese, caffeine don't apply to everyone. I have never reacted to any food but I don't drink alcohol. Just also to mention that migraines make us crave certain foods, often carbs or something sweet and then people mistakenly conclude that it is those foods that are the trigger. Keep that diary, record everything, it's invaluable! Another thing, migraineurs have to be creatures of habit. You have to go to bed and rise at regular hours. Too little sleep can trigger one, as can too much sleep. Regular meal times need to be set, a missed meal can trigger a migraine as well as not drinking regularly. Sometimes it can take a number of triggers to finally trigger the migraine therefore; you rise early to catch a flight, the airport is noisy and over bright, you don't eat breakfast at the time you would usually, you become dehydrated on the plane. It's often a combination of triggers that push you over the edge. The difficulty of menstrual migraine is that that trigger is sitting there waiting to bite you on the a—e almost constantly!! Triggers can't always be seen, strong smells can do it, flowers, perfume, heavily scented shampoos, smoke, pollution fumes, tree pollens. High pressure is a common trigger and changes in weather can create havoc for migraineurs.
OK, so much information, let's see if I can get it into some semblance of order.
I think the most important thing for you to do, starting immediately, is to keep a really detailed diary. You mentioned you tried doing this between Jan and Apr but couldn't see any patterns but you then mentioned that last month's worst days were 14/15 and then 20/21. There is a pattern here, oestrogen is at its height on day 13 and then immediately starts to fall: there is another rise in oestrogen at day 21/22 before it falls away again. Equally, progesterone starts to rise dramatically on day 14/15 reaching its peak on about day 21/22. Given that you thrived for many years with the cbc pill and then the mini pill, it seems possible to me that you may be someone who will do well with some form of HRT to control the migraine BUT you need to build a clear picture of what is happening first in order to give the docs a tool to work with. HRT was a disaster for me but I could never take any form of contraceptive pill, however HRT is used regularly to treat menstrual migraine and don't be told otherwise. You do need to see a specialist who is familiar with this though. What region of the country are you in? Perhaps post on here a request for recommendations in your neck of the woods.
Start a detailed daily diary. Include any symptom including visible hormonal changes; cervical mucus changes (are you aware of the normal changes in mucus in a reproductive cycle if not ask me? Cervical mucus tells us so much), breast swelling and pain, mood changes, headaches, dizziness, nausea. Include any events like lack of sleep, late nights, early or late rising, sudden weather changes, too much alcohol etc. Don't spend all day every day doing this but you'll become speedy at recording the info. This exercise is really the most important thing you can do for yourself at this moment.
I tried loads and loads of acute and prophylactic meds and the only two things that have helped me are Frovatriptan and Diclofenac suppositories. None of the other Triptans worked for me. Frovatripan is recognised as the best acute treatment for menstrual migraine, which have the habit of rebounding. It can take a while to work, needs to be taken as early as possible after the headache pain starts but it has a long half-life so lasts longer preventing a rebound. The Diclofenac suppositories bypass the gut, which is in stasis in migraine preventing absorption, and are swiftly absorbed and work fast. So, at the very beginning of migraine headache, take a Frovatriptan and insert a Diclofenac suppository and sit back quietly and allow them to do their thing. Never run around when in migraine especially at the start. If you can abort them early you stand a chance that they won't rebound. Obviously I'm not a doctor or your doctor Mav, you need to discuss this with your specialists but Profs MacGregor and Goadsby recommend this. Triptans can't be taken if you have high blood pressure and can only be taken so many days a month but if you can stop the rebounds by medicating efficiently it may reduce the frequency and intensity for you.
Blimey, sorry, this is a bit of a tome! Everything I have discovered is through personal experience, through consulting with specialists and endless reading and researching but as I say I am not an expert. Read as much as you can and always prepare yourself with backed up information when presenting with a specialist. Do not under any circumstances be persuaded to have ovarian surgery without proper research, speak to me if it's suggested and I'll point you in the right direction.
I'm going to attach a link to the Migraine Trust. It's an excellent source of migraine info and if you are not aware of it I would definitely recommend a read. One of the best things we can do for ourselves is to understand what is happening because whilst we may not be able to do very much, it creates less anxiety as we feel more in control.
https://www.migrainetrust.org
Good luck Mav, I hope this was of some use. Do please ask anything at all you need to. xx
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Sorry Mav, wanted to also suggest mefenamic acid to you for your painful periods. Have you ever been prescribed it? It's an NSAID that seems to successfully work on pelvic pain. I was prescribed it as a young teenager suffering from shocking period pain, at my mother's insistence. The brand name then was Ponstan. I insisted my daughter was also prescribed it for her serious period pain. It sometimes takes a couple of doses before it works but it's utterly brilliant stuff, they prescribe it after pelvic surgery. If you do decide on the diclofenac route though, you won't be ably to combine the two as they are both NSAIDs. x
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Elizabethrose you are so knowledgeable - thank you for all the information it is truly invaluable. I went to see a female GP this morning and basically she was useless! Her opinion is that my cycle has not deviated enough and given that I do not have hot flushes or night sweats then HRT is not an option for me - she also said that my Estrogen levels are fine - they are not low enough to be causing this apparently. I am raging with myself that I didn't push for a gynae referral. She just kept saying "what does the neuro say?"
Looking back over my blood results from the last year I have noticed that my Day 21 progesterone has always been elevated eg 51 or 70 when the upper limit is supposed to be 50.6 and my recent Day 4 was 0.9 when the upper limit is 0.95 nmol/l. Could this be the smoking gun? Perhaps all along the mini pill was "regulating" that for me and when I came off that in Aug 2015 the agonising periods returned and then subsequently in Sept 2016 these awful headaches started. I wonder is there any reason that I couldn't go back on the mini pill now to see if it stops the headaches?
Interestingly a recent day 4 Estrogen level was 191 and a day 4 Estrogen level in May 2016 was 316 pmol/l.
I am still keeping a diary but I will watch more closely on Day 13/14 and around Day 21 as well as at my period to see if any of those days are consistently worse. I think you are right about Gabapentin, the bladder discomfort now at 500mg daily is not as bad as at 800mg daily and so it will be interesting to see if that disappears as I titrate off it.
I live in Ireland and so finding a gynae who is familiar with menstrual migraine will be challenging and even going privately I can expect a long waiting time for an appointment. I am going to make some calls to see what I can find and then I will go to another GP in the practice and explore the option of the mini pill and a gynae referral.
My neuro also wants to try an occipital nerve block injection - have you ever tried that?
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Mav if I were you I'd request a referral to a decent gynae. I have no idea how it works in Ireland, research the best in your area, do consider posting a new thread here asking for recommendations, and if you come up with someone you feel confident in ask for a specific referral to them.
This business of not being in peri and still late reproductive stage is very difficult to measure and I've been told by a couple of the best meno docs in the UK that it's almost impossible to measure it without doing massively frequent bloods as every woman is different despite everything that the Swan and other studies concluded. My mother's periods just stopped, really suddenly without warning. She had no peri or meno symptoms and then post meno silent migraine kicked in for about 18 months. We are all different and rarely text book!!
Either way maybe it's back to the mini pill for you, give it a go, if it does't work insist on trying HRT. The trouble with peri is that the hormones behave erratically which may be why some months are more difficult for you.
I decided against Botox and the occipital nerve block injection: I got the feeling that the docs didn't feel confident it was going to be successful for me, taking into consideration my history, and with respective success rates of 50% and 60% I wasn't confident either. To be honest I'd had enough, my journey had been a long one!. I'd tried so much and had been through so much and really felt confident that the docs were right that all would calm with a natural meno. I've made do with the Frovatriptan and the Diclofenac which have been my absolute life savers! I don't know anyone who decided to try either to advise you further with that.
My advice would be to start researching, check out the medical papers of docs such as Nick Panay, Anne MacGregor, Peter Goadsby. Search on using HRT in early stage peri and using it to treat migraine. I've read loads through the years so know that the papers and studies are out there. Once you have a case present it to your docs, they'd be mad not to heed the advice of such well considered and studied specialists. Alternatively if your diary starts to show real patterns, oestrogen can be used as a prophylactic just before a period. It didn't work for me but works for others. Check out the link I sent you for the Migraine Trust, there may well be info there that you could produce.
Good luck, don't give up the fight and do ask if I can offer any further advice xx
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Thanks Elizabethrose for your sage advice....I have made the decision today to go back to the GP next week to ask about the mini pill for Frovatriptan and either Diclofenac or Menfenamic. I will also insist on a gynae referral. In the meantime I will do some digging to try to find a gynae here who is familiar with treating hormonal migraine. I have truly learned more from you in the last 24 hours than I have learned from any specialist in the last ten months and for that I am so grateful to you.
I am coming to the conclusion that I may not yet be in full blown peri because I don't have the classic symptoms of flashes, sweats and hugely irregular periods but rather what I am having is hormonal migraine (as opposed to pure menstrual migraine). If true, that may explain the constant daily headache which then drastically worsens at different times in my cycle. On that basis I don't think any GP or indeed Neuro is equipped to deal with that and hopefully the solution will lie with a gynae for me.
I will also take your advice and look for the papers written by the experts you mentioned.
Thank you so so much for your support
Mav
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Mav I'm really happy to help you and so pleased that you now have a plan! My mantra is if we know what is happening to us, even if there is no cure, it is far easier to deal with it. Call me a control freak!!
I send you all good wishes and every success, do let us know how you get along x
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Thanks Elizabethrose and if you don't mind could I ask you one more question.....when you were in the worst of this did you have headache-free days but some days were migraine days or like me did you have a headache every day with some days being way worse (migraine days)? From what I now understand, pure menstrual migraine occurs around menstruation whereas menstrual migraine occurs both at menstruation as well as on other days with hormonal fluctuations. However I haven't yet come across anything which talks about hormones causing a daily headache and migraine. My neuro says hormonal fluctuations are to blame for it all but the Endocrinologist said if hormones are to blame then she would expect the headache to ebb and flow with the hormones eg she would expect the headache to occur on certain days but that should be followed by headache free days which is not happening in my case. Perhaps the answer to that is a gynae would be better at understanding peri? Aargh it's so frustrating.....I would truly love to lock a gynae, an endo and a neuro into a room and not let them out until they can agree on an answer and an effective solution!! I guess I have been watching too much Grey's Anatomy 8)
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As I said to you my migraines morphed, my story started with a migraine coming on the day of my period. Then it could fall anything between -2 +3 days of my period. Then one would develop and then rebound this could maybe last for three days then rebound for three days. This extension continued until I was in bed for any thing up to 13 days with each migraine, but the beginning always starting -2 +3 days of my period. Now given that my cycles were greatly reduced by that point I could find I only had a few days left before the next period and migraine onslaught started. Nightmare! Loads was tried to manage it, nothing worked!
Then they tried HRT and I was being treated by a number of different specialists all with their specific hats on. The day after the first dose all hell let loose and for the best part of a year, with dosage changes and very very careful monitoring, I had no more than 3 migraine free days a month, out of bed.
Hormone supplementation is an absolute curse for me, no matter what is tried. Even with Vagifem I have side effects though some good and some bad, nothing I can't live with. I am super sensitive to hormone change and supplementation.
However, I think it would be different with you because you've successfully used it for all of these years and it has suppressed all of the horrible PMT rubbish that you are experiencing now. Now I think your problem may be being caused because you don't have the migraine under control i.e. you're not managing to abort them thus they are rebounding, which makes it seem that they are continuous, Do you understand my logic here? Try the Frovatriptan and Diclofenac suppositories (not tabs) and take them right at the start of the headache, it may abort it and prevent the rebound from happening.
Migraine can last supposedly up to 3 days but mine could go on for 5, which is a worry because they are concerned about Status Migrainous. The migraines should be aborted if they last too long. Docs have been called in to me to knock me out, which can abort them.
Once you find a way to abort an attack and prevent a rebound you may find you have migraine free days and with your diary you can start to see a clearer pattern. You absolutely cannot take too many triptans as it would cause MOH, which you are aware of. But if you can abort and stop rebounds it could clear time for you. Then it's finding a pill that will suit you and hopefully stop the migs in their tracks!. I understand there are new pills suitable for women of your age but sorry I know nothing about them, maybe a new thread and question will throw up some advice here on MM.
Unfortunately when HRT was stopped it took a very long time for the constant migraine situation to change, years really. It just totally messed me up and as I was further into peri (mine has lasted an unnaturally long time) I then found that my migraines were triggered by every hormonal rise and fall, so were almost a constant feature, maybe 24 days a month. Now I'm not telling you this to frighten you, it is highly unlikely that you will be the same as me, especially given that you have thrived on the pills. I honestly think they can get you sorted!!
You'll get there, roll up your sleeves! Please do ask if there is anything else. x
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Sorry Mav, just to add. Are you aware of the progression through the stages of a migraine, I mentioned them in my second post? What you may be thinking is a an every day migraine could be, in addition to the rebounds, just the different stages. In postdrome when the migraine is effectively over, you can be left feeling battered and bruised. I always said that it felt like I'd been kicked by a donkey! If you can abort them you don't then have to live through all of the those later stages. I hope I've explained this satisfactorily do ask if it doesn't make sense to you. x
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Wow Elizabethrose you truly had an horrific time of it....my heart goes out to you that you suffered so much.....it truly is an awful disease to have to endure. Thanks so much for your tips and your wisdom, you wouldn't believe how much it has helped me. I am aware of the four stages....I don't get any aura thankfully. I am slowly learning to tell the difference between my daily headache versus the migraine - In the beginning it was intense pain, brain fog, nausea and dizziness all of the time - it didn't wax and wane....I literally sat on the couch in agony and dizzy all the time. Over the last month it has been different - maybe the Gabapentin is partly responsible for this "improvement" or maybe it's just settling down on its own. Now I can tell the difference i.e. My daily headache is a constant dull blunted hangover feeling whereas the migraine pain is intense pressure like my skull is too small for my brain and my eyes feel strained and out of focus. I think the fact that I have tapered back to 500mg of Gabapentin has meant that the daily stoned/drunk feeling is gone which has helped me to distinguish the symptoms whereas before they were all blurred together. Having said that I am in the follicular phase right now and am feeling "less bad" but all could change for the worst when I hit the luteal phase but if that happens at least it will tell me a huge amount. I really have to thank you for helping me to see perhaps there is a pattern for me - in that most of my worse days seem to happen after day 14. There is some consensus that the natural fall in Estrogen in the luteal phase is responsible but I wonder for me is it the rise in progesterone at this time that is the culprit given that my progesterone is constantly either high normal or above normal or perhaps it's the Estrogen/progesterone ratio at this time that slams me.
I will most definitely ask my GP for Frovatriptan to see if it will abort the migs for me and it will be interesting to see if that then gives me headache free days as well - if that happens then it will stack up with what you said about it being a mig that is rebounding all the time rather than a mix of chronic daily headache superimposed with migraine.
Thanks for spurring me on and for helping me to see the wood from the trees on this.
Mav
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Mav I've been thinking through what was happening at the time the migraines first kicked in with me and wanted to run this past you.
I'd never suffered from allergies to plants or pollen when younger, had never had hay fever but had developed an allergy to cats in my teens which was like allergic asthma. Around 40 I started getting daily headaches, asthma seemed to ramp up a notch, I started weirdly reacting to odd things like peeling potatoes (!), symptoms of peri started nagging and my menstrual cycle changed from a rigid 28 days to 21, the bleed from 6 days to 1.
My docs decided they wanted to investigate the daily headaches and increased allergies and asthma and sent me off the the Brompton hospital for tests. It was discovered that I had suddenly become allergic to quite a number of things and reactive to others and I was told I had developed allergic rhinitis. They duly gave me new asthma meds which I only ended up needing for about six months but they also prescribed Triamcinolone nasal spray which I had to take daily.
What happened next was rather miraculous: within about six weeks all of the daily headaches disappeared leaving only the monster migraine that struck me down with my period which one doc had diagnosed as reoccurring sinusitis. Luckily I had another wonderful doc who recognised what was happening as her mother had experienced the same in perimenopause. She realised I had developed pure menstrual migraine and given the other early peri signs, all was checked and I saw a gynae. I was 41.
Have you noticed any signs of allergy/reactivity over the past year? It is very very common for allergies to increase or appear in peri. Just a thought that that might be what is causing the daily headaches aside from the migraine. x
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Hi Elizabethrose thank you for the additional info which has made me thinks about some stuff which I have going on that may or may not be related....I will throw it out here to see what you think
Last year I had a really bad red left eye which wouldn't clear with antibiotic drops. After 4 wks I went to the eye clinic in the hospital and they said it was an infection called Episcleritis and gave me a course of steroid drops and it cleared up. This year in April both my eyes had mild redness that wouldn't clear up. In addition I was also suffering from dry mouth. I went to see an opthamologist and explained about the eyes, dry mouth and constant headaches. He was concerned that I might be suffering from an autoimmune disease called Sjogrens Syndrome and referred me to a rheumatologist. Lots of blood tests were conducted but the markers for Sjogrens came back negative. However blood tests only catch 70% of sufferers and so I have to have a lip biopsy in November for a conclusive diagnosis. So here's the dilemma - dryness of eyes mouth and vagina are common to both Sjogrens and perimenopause. However Sjogrens does not cause migraine but it can be comorbid. My neuro said the eye redness is conjunctival tearing which is a feature of migraine but it is interesting to note that since I have been using lubricating eye drops the redness has not returned even on my migraine days!! He said the dryness can be attributed to hormonal changes in peri.
As if that is not enough to contend with, a recent MRI revealed that I have three protruding discs in my neck (C3-4, C4-5, C5-6). For months I had experienced burning pain across the top of my shoulders but I had put that down to poor posture at my desk all day for work. My neuro said this is an "incidental" finding and is definitely not related to my headaches. However I am going to see a physical therapist next week who treats a lot of international athletes to seek his opinion on this.
So I am trying to figure out if the migraine and dryness issues are:
A) hormonal migraine from perimenopause
B) hormonal migraine from perimenopause with comorbid Sjogrens
C) cervicogenic headache form protruding discs and Sjogrens
D) a mix of any of the above
So as you can imagine, I am truly demented with all of this. To go from being perfectly healthy to one day my health just falls off a cliff is hard to believe. Prior to the abrupt onset of the headaches and dizziness the only "ongoing" symptoms I had was a dry mouth and burning across my shoulders.
Perhaps it will turn out that my discs are causing the daily headache and my hormones are causing the migraines....
I am a total disaster......
Mav
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You have so much going on and I think that the lip biopsy is a very good idea especially as it's difficult to diagnose Sjogrens from bloods alone. It's a sneaky little fella and can sit hidden for a good while. Have you heard about Hemicrania Continua? Let me post a link, do have a read;
https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/
Honestly Mav, once you know where you are and what is going on you'll find a way to deal with it all. The enemy is best known. People ask me how I dealt with the rubbish that migraine threw at me and my response is the same every time. Humans are inordinately resilient, you just take each day at a time, when you get a good one, you celebrate and make the most of it.
If it's possible for you I'd seek specialist help, research as much as you can and go in armed to the gills with info, questions all written down. Know what you're talking about, be informed, they are then generally more open and responsive. More than ever, after listening to you, I'd advise you to start keeping a really detailed diary. The info will help them enormously to determine what's what.
You're right, all of those symptoms are common to so many different things, peri included, so you need to know where you are, it'll then be easier to cope. The unknown is a scary place.
Aside from all of this other 'stuff' get the migraines sorted. Prof Anne MacGregor directed me to take the Frovatriptan at exactly the same time as the Diclofenac suppository, it is like a double edged sword and a two pronged attack on the mig. (Do not be fobbed off with a diclofenac tab, they don't do the same job at all!) The mefenemic can be used to treat the period pain on the days you are not treating the migs (you may even find that the suppository sorts the period pain too, I did on occasions!) If you can sort the migraines you'll be in a better place mentally and physically to concentrate on the other issues. You really sound peri to me but what do I know?!
I really wish you well and hope you find a solution soon. Ask anything when you need to x
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Sparkle the trouble with peri is that it can sling so much at us and each of those things can bring baggage with them too. It can feel overwhelming and as if we are constantly fighting off a nasty! On top of that there are so many potential symptoms of migraine that can change as well through the migraine stages. Most people, including docs, are completely unaware of some of the migraine symptoms, some are totally weird and many of them are scary, especially with something like silent migraine when the sufferer doesn't even know they are in migraine.
I never knew about Hemicrania Continua, and I thought I'd read just about everything ever published in my search for answers. I sat at the COLM years ago next to a woman whose eyes were so red they looked as if they were bleeding. She described the condition to me. The woman on the other side of me had red eye with her regular migraine but I never have, though I suffer with occular rosacea, which thankfully I manage to keep under control. In migraine my eyes are swollen and I can't focus but never red. So many of these peri and migraines symptoms trip over each other and I suspect that's what you are experiencing Mav.
Like you I have disc problems but in my lower back, they could of course be a separate issue, related to peri, exacerbated by peri, it can be exhausting trying to work it all out. x
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Mav, Elizabethrose is far more knowledge about migraines than me but my story might help you.
I had no history of migraine or PMS while fertile although to be fair, I never got on well with synthetic progesterone. When I was on the pill in my 20s, I put on weight, had hair growing in unmentionable places (thankfully it disappeared) and I had a constant nasal drip which I now know was an allergy to synthetic progesterone.
I first had a Mirena coil in 1998 for contraception and again, didn't feel great and had heavy, painful breasts but I didn't have migraines... until my oestrogen levels dropped significantly when I entered menopause. Two problems emerged, firstly, I had increased vaginal irritation (due to lack of oestrogen and too much progesterone in the coil) and I suddenly developed silent migraines i.e. migraine aura without headache.
Several years and several specialists later, it turns out that I am intolerant to all types of progesterone used in HRT preparations in conjunction with low oestrogen levels and it would appear that my own self-produced oestrogen protected me from the ill-effects of synthetic progesterone while fertile but once they dropped to a very low level, that protection diminished hence the migraines.
I now use Oestrogel, very low dose Utrogestan (vaginally) and take 25mg DHEA tablets everyday meaning I produce a small amount of my own oestrogen again and so far so good.
The problem is everyone is different and you may have a completely different migraine trigger. I believe Elizabethrose can't tolerant fluctuating hormones and some women can't tolerant oestrogen surges so it is challenging to find your own personal cause. The only way to do it is by process of elimination.
I wish I could be of more help but migraine is very complex. Please do come back if you have any questions.
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Thanks everyone for your replies.....they are so helpful in helping me to get a handle on all of this.
I went back to my GP today and we reviewed everything that has gone on in the last two years. It turns out that in April 2015 I was on mini pill Noriday and switched to mini pill Cerazette in Aug 2015 (I can't remember now why I switched). I came off Cerazette in Sept 2015 because my eyebrow hair was shedding massively. It could have been the Noriday rather than the Cerazette that triggered this because the progestin in Noriday is "not hair friendly". The GP reviewed all of the bloods taken since last year (there are lots of them!!). He thinks perhaps my problem is not the overall levels of my hormones but the actual fluctuations in them. This would somewhat explain why ovulation, Day 21 and the 3/5 days before during and after my period are way worse than any other time. He has agreed to let me try Cerazette again as a way to "level" my hormones. He said that my levels are not low enough for HRT and given my migraines I wouldn't be a candidate for Estrogen supplementation anyway due to supposed increased stroke risk in migraineurs with Estrogen. I do realise that Cerazette drastically reduces both Estrogen and progesterone levels in order to suppress ovulation and that the Cerazette might have been the culprit before in triggering my eyebrow hair shedding ( they never fully grew back despite almost 2 yrs off it and coincidentally my neighbour who is same age as me has developed this problem too and her period is coming every two weeks - she has never been on Noriday or Cerazette so perhaps it was unrelated to either pill in my case). I do also realise that Cerazette may worsen my dryness/irritation but I am willing to give it a try as a last ditch attempt before trialing any more drugs from the Neurologist - the side effects of any that I have tried are just intolerable. The GP also gave me Frovatriptan and Mefenemic to see if these help. If this current plan doesn't work he will give me a gynae referral.
Elizabethrose I read an article yesterday from Prof Anne MacGregor which talked about Frovatriptan and Mefenemic for use in menstrual associated migraine and I quoted it to my doc today and would you believe it he is familiar with her - he attended one of her talks some years ago!! (My GP is from the UK but working here in Ireland) so I took that as a "sign" that perhaps this is meant to be and that they will work...
Thanks again everyone for your support and for your advice.....keep it coming
Mav
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Hi Mav196 - I haven't read any of this thread apart from this post - but just to say that suffering from migraine is NOT a contra-indication for HRT and especially if it is hormonally triggered. HRT is nothing like the strong synthetic oestrogens of the CCP but mostly consists of bio-identical estradiol - the same as in our own bodies. In these circumstances transdermal oestrogen is recommended:
Migraine
Migraine is often triggered by hormonal fluctuations and therefore may occur around the time of a period. Such migraine may improve at the time of the menopause. Some women find that migraine may be triggered by the daily hormone fluctuations which can occur with oral (tablet) HRT so the transdermal (patch or gel) route is usually preferred with a history of migraine.
So - don't rule it out if you get any menopausal symptoms of low oestrogen :)
Hurdity x
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Mav what a brilliantly encouraging post, well done you! Just a week ago you posted in despair now things are really moving forwards.
Hopefully the pill will resolve the migraine issues, especially if combined with the Frovatriptan. I'm sure the doc told you to but take it as soon as you possibly can after the headache starts, the earlier the better. The major proportion of my migs have always started during the night but when I wake I take a Frova asap. If you find that the Mefenemic doesn't work on the migs but works on the period pain, or if you find yourself nauseous with the mig, do request the Diclofenac suppositories too. They bypass the gut in stasis and work really fast. Obviously that's two lots of NSAIDS so you'd never take them on the same day.
I feel really heartened for you! :foryou:
Just as a footnote and this is an aside as you have a plan of action which will hopefully get you back on track. HRT is not contraindicated for migraine and many GPs don't recognise this. The CCP is contraindicated for anyone with migraine with aura which I think confuses the docs. I have papers and studies to back this up so if you find yourself later down the line struggling with this issue, do ask me and I'll post the necessary info. There was a thread discussing this just this week, I'll post a link here for you to read.
https://www.menopausematters.co.uk/forum/index.php/topic,36515.0.html
Prof MacGregor is an absolute darling, really knows her stuff and is so giving of her time. She frequently chairs GP presentations on women's health and has a specialism in hormones and migraine. She told me once that her first task at the beginning of her training was to disprove that menstrual migraine was a thing: she proved overwhelmingly that it did indeed exist and has massively contributed to it's further study. The first two and a half hours I spent with her was, without any exaggeration, the most reassuring time spent in my life. I owe her a great deal!
Good luck to you, please do keep in touch with us all. Any snippet each of us can pass on here to help others struggling with this nightmare disease is worth it's weight in gold!! I wish you every success! xx
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Oh what a dreadful situation :foryou: ........ HORMONES :(
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Hi everyone
Just a quick update....I went to the GP and he said there is no reason why I couldn't try Cerazette to see if it would fix both my migraines and my PMS. i know that Cerazette reduces Estrogen levels to follicular phase levels and I was worried that such a reduced level would give me additional problems - eg a follicular phase level of someone in their 30s would prob be vastly different to someone like me in their late 40s and so my "reduced" levels on Cerazette might be too low. And so he has given me a gynae referral letter and I am now awaiting an appointment. I guess given the upheaval of the last 10 months I am not brave enough to just try Cerazette without a gynae opinion.
I think that when all is said and done it may transpire that being on Cerazette from my 40s up to Sept 2015 probably kept my hormones level and "spared" me from what is going on now. Perhaps between Sept 2015 and Sept 2016 my hormones went haywire when I was off the pill and it culminated in the onset of this nightmare.
I will keep you posted on how my gynae appt goes
Thanks so much to you all for your support and wisdom
Best wishes
Mav
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Hi Mav,
Great to read you've been referred etc. Probably a good idea to get expert advice on that. I have no idea about the Cerazette: you could post a separate thread asking if anyone could advise as it may be that other members with relevant experience may not read this thread. If you do, include Cerazette in the title.
Sending you every good wish, do let us know how you get along! x
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Hi Mav196
I can't remember what you said you periods were doing before you started all of this - I seem to think that due to the various POP types you don't know?
As you say, reduction in oestrogen levels (due to inhibition of ovulation by Cerazette) is not ideal if they fall too low - as you say there doesn't seem to be information as to what happens while taking this product, once your ovaries being to pack up and oestrogen levels decline anyway, so it's great that your doc has referred you to a gynae!
It would be good to ask him/her whether one of the newer CCP types for older women would be OK for someone who has suffered migraine (with aura) - because there are two types QLAIRA and ZOELY which contain estradiol so would give you additional oestrogen while suppressing your cycle and hopefully the pms symptoms. They are not usually taken beyond 50 although I'm sure this can be varied under medical supervision ( sorry I can't remember how old you are?).
Do keep us posted :)
Hurdity x
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Thanks Hurdity.....I will be sure to ask the gynae about those, thanks for suggesting them.
Mav