HRT 7 weeks in

 I have now been on HRT for around 7 weeks and things keep improving for me on the whole. I am constantly amazed at how many parts of my body were effected by the fluctuation of hormones. I am so grateful that I didn't have to battle my doctor to be put on HRT. I can honestly say the last three years have been utterly miserable with all the symptoms I have been suffering that just went crazy once I stopped taking the contraceptive pill back in December 2019.

  

My main reason for starting HRT was to see if it would stop or reduce the migraines that had increased from one a month when on the pill to 3 a week when I was no longer taking it. The difference has been remarkable. I have had a couple of "migraines" without aura's but they haven't been as intense as my pre HRT ones and the Sumatriptan do knock them on the head ( pardon the pun ) really quickly. Migraines now are something I can live with and not something I need to be ruled by, I couldn't make plans without having to bring my migraine grab bag with me. Even if I was post migraine I was suffering from the after effects, so that it meant I only had one day a week where I felt like I was fully functional or at least functioning at my normal pre coming off the pill level.

The anxiety I suffer with has massively reduced, I still have the odd panic but it is nowhere near the totally paralysing fear I was dealing with since 2017. I have noticed a massive improvement in my overall mood as well. I hadn't listened to music, either on the radio or by putting a CD on since Frankie passed away on 29th December 2018. I was listening to a vinyl record when he had his neurological even that let to us making that awful decision that every pet owner knows and wishes would never happen. It wasn't a conscious decision not to play music, I would sing along to music whenever Mr Myasthenia Kid played music videos on the TV but to actually go and put music on or listen to it, just the once or twice when I found some music I really loved. But then after a while the desire to listen went away again.

A massive indicator of my mood has always been my desire to listen to music, I am not a one band or one genre only kind of person. I love pop music so you will hear me singing my heart out to anything by Katie Perry or Brittany Spears. I love the bands U2, Travis, Cold Play, Radio Head, Snow Patrol and James. I like some of the metal and rap that Jay plays, I also like opera and classical music. So to not sing or bop along to music is quite odd for me and I didn't realise what a long time it had been since I really listened to music by choice not just because I happened to be in the room when it came on. Music was a huge part of my teenage years, again I had very eclectic tastes but I seemed to have lost that in the last few years. Now everyday I have music on, I tend to listen to  Absolute 80's . I really love the music from my youth and will sing along to my hearts content. I am quite shocked by the difference HRT has made to my mental state and that I have got some joy back and that things don't seem so bleak and overwhelming as they did previously. 

I just wish when I had been to the doctors in 2017,2018, 2019 about my anxiety and mood they hadn't just increased my antidepressants, yes I had been through some pretty awful trauma but the anxiety and low moods were so much more than that. I had no clue that depression and anxiety could be linked to the menopause. I don't think many women do, so how many of us are being given antidepressants which are an absolute ballache to come off, when it is in fact our hormones that are causing the issue. It is also sad that on all those occasions I saw female doctors and whilst they were sympathetic and understanding whilst I spent the majority of the appointment in tears none of them thought that maybe what I needed was HRT. Now at some point in the future I will be looking to reduce my antidepressant, which is also probably behind my weight gain. Deep Joy as I have been through the experience of reducing antidepressants before and it is an utterly horrific experience. No one is told how awful coming off these meds are when they are prescribed them. Yet HRT comes with a warnings list as long as your arm.

Another symptom that I had no clue could be caused by the menopause was dry skin. My skin has been terribly dry for several years and no moisturiser would work as it would sink in and disappear. My physiotherapist used to say whenever I had an appointment she couldn't get over how dry my skin was, making me feel a little self conscious because it wasn't anything that I could do about it as nothing worked. I didn't realise until  very recently that this could be another symptom. But then again I didn't know acne could also be a symptom, for the last few years I have had bouts of cystic acne, pimples all on my chin. Having not really suffered with acne as a teenager I have found the bad skin really difficult to deal with. I would end up whenever I left the house having to at the very least cover my spots with concealer and powder, even if I knew I wasn't seeing anyone I knew. If I was seeing people I did know that meant a full face of makeup and praying that the livid purple cystic acne lumps would break free of their concealer prison whilst I was out. I am not massively vain, you kind of lose your dignity and your vanity when you are chronically sick but acne in my 40's really did a number on my self confidence. It wasn't just the fact it was painful it was also the fact that nothing I did seemed to help. I took vitamin B5 for a year....nope, I changed skincare regimes to Tropic Skincare and whilst that did reduce the number of outbreaks and redness it didn't get rid of the acne completely. I feel awful for having my self confidence destroyed by having a max of 4 spots on my chin at any one time but it did and I won't apologise for it.

Before I started HRT I had noticed I was losing a lot of hair, when it was being brushed or dried. Whilst I realise losing hair everyday is pretty normal, this was beyond normal, my legs would be covered in hair when I finished sorting my hair out for the day ( I tend to lean forward whilst sat on the bed when my hair is being done) . It was also obvious when Jay had hoovered by bedroom when it was becoming a close contest between Dembe and I whose hair he had picked up the most of!  I practised cognitive dissonance with the hair loss, I knew it was happening but I told no one. I came up with excuses like I hadn't conditioned it enough, my hair was over processed due to straightening irons. All of which I knew was untrue. It was only when my hairdresser mentioned that  my hair line around my face had become considerably thinner that I had to say that I had noticed that my hair had been falling out. For my hairdresser to notice when she see's me so irregularly it was a shock that I had lost that much hair. I am very lucky I have fine hair but an awful lot of it. After the first week or so of HRT I noticed that I wasn't shedding as much hair, I was back to normal amounts now rather than handfuls. I have suffered hair loss previously when I was put on the medication Lamotrigine by my neurologist back in 2009-2010. I was putting my hand through my hair and handfuls were coming away. It is a rare side effect of the medication which made me come off it, plus I didn't believe the diagnosis he had given me to put me on the medication.

On the whole HRT has been a positive experience, the only thing that came as a bit of a shock was getting a period two weeks ago out of the blue with no warning. Now just to remind people if you have not had a period for a year ( and you are in the menopause ) and you suddenly have a bleed or what you think is a period please get it checked out. Bleeding can be a sign of cancer so it is important you are properly checked over. I hadn't gone a year without a period, I would have officially in the menopause on 7th December but that surprise visitor has thrown a spanner in the works. Thankfully due to the Facebook group I was in I knew that HRT could trigger the return of periods...deep joy. I just wasn't expecting it as I hadn't had my usual symptoms other than a 7lb weight gain overnight which was my usual water retention ( always has been between 5-7lbs) and a massive craving fro chocolate that I couldn't work out why.

Pain wise it wasn't too bad, it was uncomfortable but not enough to stop me getting on with pottering about. It was incredibly weird just because I hadn't actually had a period for nearly 5 years!

I was told by my doctor when she prescribed HRT that it would take up to 12 weeks for it to reach it's full effect so I am more than half way in and the improvements in mood, skin, hair loss have been mind blowing. I get maybe one hot flush a day now and I don't have to change my clothes when it happens. I certainly don't have to stand outside in the cold for five minutes waiting for the heat to subside - no fun at all during the heat wave as there was nowhere for me to go that was cool. I am also sleeping better as my sleep isn't being interrupted by hourly hot flushes where I am drenched in sweat. However the thing I am most grateful for is the reduction in frequency and severity of my migraines. I didn't realise how low they had made me feel and how I just felt like I was existing rather than living.

I am fully aware that menopause is an individual experience and whilst some people have positive experiences of HRT others can have negative experiences. I know I have been very lucky to have so many improvements with the first dosing level I have been given. To take HRT or not is an individuals choice and I am not pushing it on anyone just sharing my experience of menopause and HRT.

HRT - 2

I have been very public about my journey with menopause and HRT. I wanted the conversation opened up for other women like me in their 40's who had for years been suffering with symptoms but had been continually dismissed by our doctors as being far too young to be in the menopause. Looking back now I can see that I have had menopausal symptoms since my mid thirties, which is shocking really. I had no clue what those symptoms were or that they could be remotely related to the menopause. After all as I far as I was concerned I was still fertile, I was having regular periods. When tested my hormone levels always came back at normal levels until a test in 2015 showed that I had abnormally low LH - Luetenizing Hormone, the hormone needed for releasing eggs from the ovaries. For more information use this link. It makes sense that my LH was out of whack as this was the year my pituitary gland was messed up, I started lactating and was the very start of my CSF Leak. It could be that I was in a temporary state of ovarian failure or it could have been a sign that my ovaries had stopped working for quite some time. I was 42 years old when the results of this test came back and despite all the symptoms I was reporting menopause was laughed at every time I mentioned it. There is a very real need to get this into the conversation so women don't have to go through what I have been through.

Although I have been vocal about the fact I was in menopause / peri menopausal - I'm not officially in the menopause until I have been without a period for a year which will be December 7th 2020 yay! 

I never expected to be criticised or given incorrect information by another female for choosing to alleviate my horrendous menopause symptoms by using HRT. I know I am incredibly lucky that I have the choice of HRT, I know my mum hasn't had that choice being put into a surgically induced menopause in 2018 when her doctors discovered she had ovarian cancer, another 2 acquaintances have breast cancers so can't have HRT as the hormones would fuel the tumour growths both have been placed into the menopause due to this. I also know HRT is a personal choice and I am certainly not advocating that everyone should be taking it. What I am advocating is that women we at least talk about it and arm ourselves with up to date information and not repeat absolute rubbish that was disproved years ago but led to thousands of women being unable to access HRT, with some committing suicide the fall out from their symptoms were so great. Also as women it is extremely important that we understand that no two women's menopause are the same. We need to stop behaving like menopause is an identical experience for all women,  as for those of us who are having a pretty shitty time to be told in effect to get on with it HRT free when the other person has barely noticed their symptoms, is a massive slap in the face and negates our experience and quietens our voices. Well except mine as usual.

We have the same issues with menstruation, those of you lucky enough never to have passed out / vomited due to period pain have no place telling women who have to just suck it up, take some paracetamol and get on with it. Every month my insides would feel like like they were on fire, sometimes this would happen for up to 7 days before hand. I was never a heavy bleeder, but the cramps were horrendous. The pain would be so bad that for the first two days of my period I would feel so sick I could only drink sugary tea or coffee. That would be my food source, because if I ate that meant I would throw up and I couldn't work and throw up. I would have a band of pain that ran from my sternum ( breast bone) all the way around my back down to my mid thighs. My buttocks would ache and I would feel like someone was stabbing me in the vagina with a knife. The only time I have had a pain free period was my very first period at age 11 and when I was on a PCA ( patient controlled anaesthesia) morphine pump after major abdominal surgery. For some reason surgery would always make me have a period even if I had only just finished one and due to having heparin injections it would end up a blood bath. Hospitals are really shit ( or they used to be) at providing sanitary towels, which is fine if you have family nearby who can go buy you some but when you are an hour away from home and you have to beg the staff for sanitary protection it is a bit fucking much. Anyway I digress.

I always thought the menopause for me would be something to rejoice in, it would mean no more periods, no more feeling awful for up to two weeks a month. No more pain levels off the chart and no more uncontrollable rage. I also used to suffer with horrendous pre - menstrual rage. I actually went to the doctors about it once, I explained to the doctor that I had in one of my rages gone to stab my husband with a kitchen knife. Managing to stop myself before I plunged the knife in his back. I have no idea what his crime was but the rage was overwhelming and it scared me. I was met with laughter.....I had just confessed to almost plunging a knife into my husbands back and it was greeted with laughter. I was told to take some evening primrose oil patted on the head and sent on my way. To be fair all my appointments regarding menstruation have ended badly. As a teenager I was repeatedly told that when I had a baby my period pains would get better. When I would pipe up that I didn't want children I would be patted on the head and told I would change my mind. Despite missing school for at least a day most months I couldn't get anyone to take my pain levels seriously. With the doctor laughing at me when I was terrified at what I may do next, I just never really bothered to speak to them again about my issues what was the point? Time after time I had been dismissed and made to feel like I was wasting their time.

So when I started raising the issue of menopause with my doctors and started being being dismissed again due to my age - I was in my early 40's obviously due to EDS I looked a lot younger, well at least 10 years. Medical professionals were still asking me at this point if I had plans for starting a family and would be quite taken aback when I said how old I was. I stopped trying to bring it up after 2 years of constant dismissals, what was the point, the message I was receiving was loud and clear, as a woman I was just expected to get on with it. I started taking herbal supplements red clover, sage, black cohosh, menopause supplements. Nothing really helped. In fact when I stopped my contraceptive pill last December I fully expected to have a period with in 4 weeks and was in shock when it didnt happen. I had always come on within 7 days of stopping the pill before but nothing at all happened this time. Looking back now I couldn't have chosen a worse time to stop it as without the progesterone the relatively mild menopause symptoms ( other than the crippling anxiety ) hit me full force. I spent most of Christmas getting changed as I had soaked through my clothes with my hot flushes. When I say hot flushes it wasn't like 4 a day, 4 a day I could live with. This was one hot flush would start to settle and another would start. My face would be beetroot and running with sweat, my hair was constantly plastered to my scalp, my glasses would steam up on my face and my clothes could be wrung out down to my knickers due to the sweating. Hot flush didn't even remotely describe what I was going through had it been just a little hot flush, as some one tried to tell me a few days ago I would have loved it. 

I was permanently terrified that either a) I would stink of body odour or b) people would be able to see the sweat marks on my clothing. I had the constant feeling of never being clean, as soon as I exited the shower a hot flush would start and that would last several hours. It wasn't one hot flush but a series of hot flushes that would make it pretty much impossible for me to get dressed as my skin would be damp from sweat. I certainly couldn't wear make up or put on facial moisturiser as it would just run off my face with the beads of sweat. After having years of barely sweating I was now, well and truly a sweaty Betty. It didn't matter what I cut from my diet, alcohol, dairy, caffeine the hot flushes didn't stop. I know that alcohol and dairy can make mine worse but cutting them out doesn't stop them. More times than I can count I have had to leave a conversation with a friend and go and stand outside in the freezing cold just to stop the flushes. You can't really do that naked after a shower!

My moods were all over the place, I could never actually feel happy anymore. I had tried an increase in my antidepressants but that just made me constipated. I had this ball of anxiety in my chest that suddenly arrived at the end of March 2018. I had a bad fall in the snow in my back garden and had put my anxiety down to that and the fact I had suffered a number of bereavements one after another. If someone asked me what I was anxious about I couldn't tell them, it wasn't that I didn't know but how do you explain to someone that you are terrified of everything, I mean everything for no apparent reason. My fear / anxiety wasn't rational. I tried hard using CBT, the doctors offered me apps for my phone and told me to contact Cruse the bereavement charity but I knew the anxiety wasn't just to do with the losses. How does someone suddenly become terrified of their own shadow. I was hyper-vigilant in the extreme, I demanded that Jay lock the front door every time he left the house when I was alone. I was terrified of being alone but I was also terrified of being in the outside world.

When we got Dembe I started having the front door locked all the time. Now where I live is very quiet, most people don't have the door locked if they are in the house. Crime does happen but the levels are very low. However I convinced myself that someone was going to break in and steal Dembe from me. Now some may say this was due to losing Frankie and Mollie within 7 days of each other and I am sure some of it was. But I had never had any fears about them being stolen and we had lost Travis our first Weimaraner in tragic circumstances. I spent the nights lying awake listening in case someone was trying to get into out back garden to break in and steal Dembe overnight. This is the first time I have ever admitted one of the irrational things I was terrified of, every aspect of every day was ruled by fear. It wasn't just a case of being a little bit anxious this was all consuming. I spent the first 6 months terrified that I would kill Dembe somehow, not deliberately but I would step on him, sit on him, I would drop one of my tablets and he would find it and eat it basically he would get hurt in my care. Everything felt out of my control and I didn't feel like me anymore. I didn't even know who I was because there was nothing at all left of me other than anger and anxiety. I was left feeling like an impostor trying to fake my way through every day.

So you can imagine my anger when someone tried to tell me that I shouldn't use HRT because it causes cancer and I should just put up with the hot flushes and mood swings. I had tried at this point for three years using a variety of expensive (and cheap) herbs / supplements, dietary changes, light exercise, weight loss to improve my symptoms. Nothing was working and now I was having three migraines a week.

I started getting monthly migraines probably around 5 years ago, as at that point I was on a contraceptive pill that stopped my periods completely or was it the fact that my ovaries were no longer working as 5 years ago would have been 2015, I had no clue that they maybe following a monthly cycle. I tracked them on and off and knew not to book anything social or appointment wise ( if at all possible ) in the window of 18th of the month through to the 22nd of the month as I would wake up with a migraine of varying severity. When I stopped my contraceptive pill in December 2019 the first thing that happened was that my migraines grew in severity, in March I ended up with my memory being wiped for 48 hours following a migraine attack and that wasn't the only time that happened. I saw a doctor at my gp practice who said she would check with the local hospital and see about putting me on sumatriptan and if they wanted to see me as my migraines were now mimicking the symptoms of a TIA ( mini stroke). 

Then Covid hit full force and the lock-down started. So I never heard anything back. My migraines continued then in May they started happening weekly, then twice a week and then three times a week. The longer I went without the progesterone the contraceptive pill had given me the worse they were getting. I was eventually given sumatriptan which was a miracle drug in the fact that it halted the migraines in their tracks but they left me drowsy and the migraines still had a two day recovery time. I was now feeling like I was just existing, I wasn't living. I couldn't make any plans because I didnt know when a migraine would strike. The only saving grace was lock- down as we couldn't go anywhere or do anything anyway.

We had been supposed to go away for three days at the end of July and in June hubby turned to me and said well there is no way that we could have gone away with you the way you are. He didn't mean it nastily he was 100% accurate. There was no point travelling 4 hours for me to experience a migraine in a different city. What would be the point in that. It still took me a further 6 weeks to build up the courage to ask my gp to be put on HRT. 

My mood had plummeted I was actually contemplating suicide on the worst days because I couldn't see the point if this was now going to be my life until the end of my days. I couldn't do the things that brought me joy because I was either having a migraine or recovering from one. When I did manage to do some sewing or embroidery I felt nothing, where as previously I had always really loved the challenge. Even embroidery or sewing would have me in a panic attack something I have always loved. I was terrified I would get it wrong, I would break the machine, I would fail. The worse things got the lower my mood sank. 

By the time we had the car accident I had put the letter in to my gp. Whilst getting over the initial shock of the accident I did a bit of research about HRT and migraines and found that with some people HRT stops migraines in others it reduces their frequency and in a very small percentage it makes it worse. By this time I didn't feel like I had anything to lose. I had joined The menopause support network on Facebook a small private group and although I wasn't incredibly active on it I read a lot of the posts, comments and made my way through the files section. There I found two papers produced by menopause experts about migraines and the menopause as I knew that some doctors may believe that it was contraindicated as I get migraines with auras. I printed those off and then sent them onto my gp, who had contacted me to say she had booked me in for a telephone appointment for about two weeks time.

I had a whole host of other menopause symptoms going on as well, which I could go on and on about but wont. One of the worst was the dry nether regions that led to the skin cracking and bleeding. It was embarrassing and incredibly painful and obviously not something I wanted to shout from the roof tops. I tried all sorts of lotions and potions to stop the dryness but nothing worked. I would have a few good days followed by a week or more of awful days where sitting would just burn, so sitting at the sewing machine / embroidery machine was incredibly painful. What I have written about is literally the tip of the iceberg so you can see how appealing a few little mood swings and hot flushes would have been to me compared to what I have gone through the last three years.

I started HRT 16 days ago, I haven't had a migraine since the second dose of HRT. I have started losing weight instead of constantly gaining from the hypoglycemia caused by the migraines making me demolish mountains of sugary food and what remaining hormones I had left causing me to store everything as fat. The acne that I suddenly started getting over the last few years is subsiding - after not having acne through puberty to suddenly be dealing with bad skin in my 40's has been a tremendous knock to my self confidence. I was always known as having beautiful skin, my chin was just covered in spots and painful cystic acne. I feel calmer, I finally am starting to feel happy again. The anxiety that was strangling the life out of me has lifted. I feel like I can breathe again.

The fact that I am no longer constantly waiting for the next migraine to hit is huge. Jay said on day 3 of HRT he could see what a difference it was already making to me. He said it was like having the old me back. I could already feel the constant anxiety lifting from my chest.

I haven't written this to appease the person that tried to tell me that HRT is carcinogenic (which made me laugh considering they eat red meat and have smoked for years) , they probably won't even read this. I know that I have a slightly increased risk of breast cancer due to starting HRT. I will be checking my breasts on a regular basis and speaking to my gp if I notice any changes. I wasn't writing this as an apology to the same person that told me as soon as I stop taking HRT all my symptoms will come back which is actually incorrect, studies have shown if you gradually stop HRT symptoms won't return or are less likely to. They are more likely to return if you stop HRT and go cold turkey. 

I am writing this for me, HRT is MY CHOICE no one else's. I certainly don't think it is right for everyone but I can't sit by and let women be scared off from it by someone who hasn't done the amount of research I have looking at the pros and cons and how they effect me. Our family doesn't have the BRCA gene, I don't know anyone in the family who has had or died from breast cancer, my mum is in remission from a rare non hereditary ovarian cancer. All this was discussed in great depth with my gp, who told me had I not provided her with the fact sheets on Migraines and HRT she would never have prescribed it for me. HRT is not handed out like sweeties it is harder to get than an antidepressant. I am also writing this to ask others not to spread disinformation, not to negate someone else's experience of menopause or menstruation because yours wasn't like that. 

Everyone must make their own decisions based on the best information available. I can tell you for the last three years I haven't been living, I have barely been existing and if HRT brings me back some quality of life, a life that is already hindered by disability then so be it.

The Fly

Well it has been pretty hellish of late health wise. Last week I managed to beat my personal best and have three migraines with aura within a week. Each time as they happened I was using a screen. I had noticed for the last few weeks that I was really struggling with a fabric I had been working with a tiny red and white check. Out of nowhere I had noticed it had started strobe - looking like it was stripey, instead of checked to the naked eye. I should have realised my sudden increased visual sensitivity was a warning sign of things to come.

For a really good visual representation of the sort of things I see when having a migraine aura this website is really good - https://www.migraineagain.com/how-to-know-if-you-have-migraine-with-aura/ It is the closest thing I have ever seen that would explain the zig zag lines in primary colours and the blind spots I develop in my vision. I tend to develop the blind spots first before the zig zags come on. My auras last for around 45 minutes to an hour and then the pain will start. Thankfully with the introduction of sumatriptan by the time the aura is coming to an end the sumatriptan kicks in. On the last three occasions it hasn't got rid of the headache entirely but even knocking it down to a bad headache is good enough for me.

Over the last week thanks to a lot of research I have found that people with migraine are very visually sensitive. It is something I have always known but it makes you feel better when it is confirmed in writing. I know as a kid there were shops that I really disliked going into as I knew the chances of them causing a migraine were high. There used to be a shop called C&A, which I loved and loathed in equal measure. Loved because I could get decent clothes at a reasonable price, loathed because of the patterned carpet, which would trigger a migraine or make me feel like I was suffering with a migraine aura. I don't remember much about the pattern, C&A has been gone from the UK for about 20 years ( so I am showing my age) .To find out more about C&A click }here{.

Medical papers have been written on the subject that Migraneurs are sensitive to light, sound, smell etc. One of the easier papers to understand should you wish to read further information on the subject  you can find {here}.

I have also always had a problem with stripes, it is the width of the stripe that is the issue. Thick bold stripes are fine they don't do anything to me however thin stripes and lots of them banded close together make me feel sick. Not because they are ugly or anything like that, its the gymnastics they cause my eyes and brain to do trying to keep up with their constantly changing pattern, especially if they are on clothing. As the person moves the fabric will move, causing a strobe effect that my eyes really struggle to deal with . 

Colours can also cause me issues, especially ones that essentially clash like olive green and turquoise - a Tula Pink Fabric, she does it in dots and a stripe. I love Tula Pink designs but I have ti limit my exposure to those fabrics as again they can make me feel overloaded visually. It is a really weird sensation to describe, I can feel light headed, sweaty and a bit panicked with them. I don't know if it id the fear of nearly 40 years of migraines or the feeling of not being able to see properly that causes me to freak out.

Since my migraines decided to ramp up this year, I have been keeping a food diary in case there was something I was eating or drinking that was triggering them. I would think I had found a trigger, so gin and dairy. Only to try them again at a later date and no migraine would happen. Nothing made sense and there was no food or drink that I was having in the 24-48 hours that proceeded a migraine that I wasn't having on any of the other days. I was beginning to lose hope that I was ever going to find out what could possibly be causing my migraines, when I had an a-ha moment. What if the trigger possibly wasn't what I was eating or drinking but something I was doing. On each occasion last week I was either using my mobile phone or chromebook when I suddenly would lose part of the screen and the screen would also appear to be too bright, burning the back of my eyes. So I did what we all do these days and Googled " do screens trigger migraines".

The first article I came cross was this one from Migraineagain.com - How to avoid a Computer Headache.  As I was reading I learned a lot, something when you have had migraines for nearly 40 years, can surprise you. What I discovered in this article was yes Migraines can be triggered by screens.....( so maybe I have found one trigger ) and that I didn't have to abandon technology due to it. I found out there were special Migraine glasses I could wear that could help me. The links in the article are only any good if you are in the USA. You can get blue light filters or glasses with blue light filters in, however migraineurs are not just triggered by blue light but also red light and light on the frequencies F1 and F4. So whilst blue light filters may help a little ( they may help others a lot) they wont stop the other light frequencies that are on the spectrum that trigger migraines.

In the UK there is a company called Migralens and their products are approved by Migraine Action a UK Charity for migraine sufferers. Now I need to state for the record I am not being paid to mention these glasses, I haven't received anything for free. I am literally sharing them because they have helped me so much since they arrived on Sunday afternoon. You can buy them as non prescription lenses or prescription lenses. The Migralens site is HERE. You can also purchase them through Amazon as I did as I was so desperate for them to arrive, although they are more expensive on there.

The lenses are very dark green and give everything a bit of a weird colour. I was using my embroidery machine yesterday and the green button to start the machine looked amber! Which threw me a couple of times making me think there was something wrong with the machine! I put my glasses on as soon as they arrived on Sunday and the relief was immediate. I had noticed this summer I was really struggling with glare from objects that were bouncing sunlight at me, going through a sunshine dappled road was causing me not to be able to see for a few minutes ( thank goodness I no longer drive), plus as I said earlier fabric I have been using for the last 6 months was now suddenly causing me to feel queasy and was making strange patterns. On putting the glasses on the pain I feel in my eyes pretty much from the minute they open subsided. I always thought that pain was dry eyes but no it is how bad my light sensitivity has become. I used my phone to check Facebook and my eyes didn't hurt and the screen didn't become wavy etc where my eyes just couldn't cope with it. I used my chromebook and my eyes didn't hurt. Within an hour the low grade headache I had since Fridays migraine melted away.

I wont lie it is a pain in the arse having to wear glasses ( for a non glasses wearing person other than weak reading glasses ) every time I use anything with a screen or lights. But the fact I don't have a headache more than compensates. This blog has been written whilst wearing them. I plan to buy another pair next month so that I have two just in case I damage one . They did make me laugh when I took a selfie wearing them

It immediately reminded me of The Fly

Showing my age!

In a cruel twist of fate I managed to come down with a migraine as I was writing this. Well at least I had 4 days without one!

Bugger!

Well I didn't think I could hate 2020 anymore than I did last week and bugger me it had some more treats in store for me. Sometimes even I find it hard to believe the stunts my body pulls.

I managed to have my first migraine with a proper full blown aura in 6 years on Friday morning which takes some beating. I was reading the newspaper online when I became aware of the fact that my left eye was struggling to see the words on the screen, in fact words were missing and the screen seemed ultra bright. I knew straight away that it was probably a migraine but I thought, it has been so long. Maybe it is the sun shining through the window hitting the screen and that's why I can't see? I struggled on for a few more minutes the weird thing was when I was looking at the screen my vision was fine. Then I looked across at Mr Myasthenia Kid and half his face was missing. At that point there was no mistaking this was a good old fashioned migraine. The last one of this type I had on my 40th Birthday how's that for timing?

Hubby immediately sprang into action and got my migraine grab bag so I could take all my meds and then go back to bed. I absolutely hate the aura stage of a migraine which for me can last up to an hour before the headache begins. During that hour the visual disturbance just gets worse and worse, even with my eyes closed in a dark room. There is no escape from it and it leaves me feeling terribly disorientated. I am so grateful to have finally been prescribed sumatriptan, it is my wonder drug as it really does just halt the migraine in its tracks. Some days I feel as rough as a badgers arse, for those of you outside the UK this is what a badgers arse looks like. Other days I may feel a wee bit groggy but after a few hours I can do some bits and pieces and I am not totally wiping out a day. It really has been life changing. However the number of migraines I have been having lately has been averaging around 2 a week and I am heartily sick of having them. Of course it is now leading up to the window that always means migraine time the 18-22nd of each month. I am hoping ( god loves my optimism) that this month I wont get it but who knows? I have had more than my fair share these last 4 weeks.

So that was Friday, which was then followed by an eventful Saturday. About an hour after I got up on Saturday a nice bout of Vertigo started. The room did one spin every so often and when I walked / stumbled really anywhere it felt like I was on a boat. Thankfully I always have a stash of meds nearby for this and to be fair it has been quite a while since I had the spins. I sat down with a coffee and tried to relax and let the medication do its thing. After a while I was bored so I decided to go and sit out in the garden. Big mistake as I went arse over tit over a plant pot ( concrete ) that Mr Myasthenia Kid has so helpfully left in the middle of the patio. Had it been a normal day I may have been able to right myself but with vertigo? Not a fucking hope - apologies for the language today it is just happening. So I tumbled across the patio all the time trying to right myself without success. I realised at this point that I was going to end up crashing through the fence and falling 4ft down onto the patio in front of our shed if I didn't stop staggering, so with the fake turf on top of the gravel I aimed my dive onto that figuring it would hurt a lot less than landing on the gravel.

Gracefully I hit the deck and if you believe that, you will believe anything. Immediately I was in a world of pain, both wrists, my left shoulder, my left knee, my left buttock and all along the left side of my back.

The only reason I didn't scream obscenities out loud was because the neighbours children were playing in the garden and I didn't want to teach them anymore bad language than I had already. Most of it was aimed at Mr Myasthenia Kid for being so stupid as to leave a bloody plant pot right in front of the patio doors! When he knows my vision is a bit dodgy and I can lose the sight in one eye if my ptosis strikes and I can't open my right eye.

So all my plans of sewing etc went out the window. Instead I spent the day dosing myself up on pain killers and sitting on hot water bottles. My ankle blew up like a balloon, i had to take my slipper boots off because it got so large it was starting to feel constricted. I was bloody furious because I needn't have fallen and I hate feeling vulnerable like that. I forgot to say the minute I landed on the artificial grass Dembe came rushing over showering me in kisses checking I was ok. Initially he wouldn't let me get up until he had checked that I wasn't seriously hurt.

Sunday was spent doing crochet very slowly as my wrists were still throbbing from the fall and my left leg was elevated all day due to the swelling. I still hurt all over but at least nothing was broken. 

Thankfully the vertigo was gone by Sunday morning, my leak is still causing me problems. It is still there and some days the head pain is worse than ever. I am still attempting to pace myself by lying down every few hours but it is difficult when I get absorbed in something to remember to. I only remember when my head starts feeling like it is crushed in a vice and all screens seem to be burning the back of my retinas.

As I am the worlds worst person at pacing myself due to the fact that giving up work due to my disabilities has made me feel like I contribute nothing at all to society, I push myself constantly beyond what is sensible and then end up paying for my stupidity. I feel that everything I do has to be better than everyone else so that people don't feel sorry for me and that I don't look weak or vulnerable. The fact that the falls and faints have become much more regular occurrences is making me feel very vulnerable and it is doing a number on my mental health. I have always struggled with never ever feeling anything I do is good enough and probably also a bit of impostor syndrome (find out more here. ) People can tell me that what I have sewn or embroidered is the best thing ever, my blog could be awarded a Nobel prize for literature but I would still be waiting for one person to say that my work is shit. It is hard to live with the constant fear that people will discover that what you do is actually crap. Add in physical disabilities and you have a wonderful mixture of weird ideas running through your head, not only are you not good enough creatively but you can't even do the stuff normal people do. It makes you feel less than. Which is why I probably do push myself too hard to prove I am worthy of my place within society.

Word for this week is Bugger!

A lovely photo of Dembe to lift your spirits

I hate 2020

I hate 2020 with a passion not just for Covid-19 and not being able to see anyone but I also hate it because it has been a year of non stop health problems. It is driving me insane and I am starting to feel that "normal people" / "well people" or even people that don't know me that well are thinking that I am either a) exaggerating the impact on me or b) I'm attention seeking. I rarely say much on social media about my health due to this. I am probably more honest on Instagram than I am anywhere. But a few times i have mentioned health issues on my own account on Facebook and now I am left doubting myself, worrying that people will think awful things about me. Believe me if I wanted attention there are a million and one other ways I could get it, being sick wouldn't be the one I would use!

So this year I am struggling with Migraines, Menopause ( I am just 4 months away from officially being in it although technically I could have been in it at any point in the last 5 years, with the pill stopping my period I can only properly count from last December), bowel adhesion's, ptosis and now my absolute favourite my CSF leak is back. I've had two good, well reasonable years with minimal symptoms. My symptoms when they have shown up have been in the evening with a dull headache and light sensitivity. Suddenly out of the blue last Thursday, my head started hurting and when you have had a spinal fluid leak you know that headache there is no confusion, the pain is like nothing else.

To describe a CSF leak headache is difficult, purely because there is really nothing else in the world that feels like it other than a post lumbar puncture headache or meningitis. I am extremely lucky at the moment that it is mild, strong enough to have me lying flat but not hugging the toilet bowl waiting for death. I was on my embroidery machine when I lent forward as I moved back my brain felt like it had been slammed between two bricks . Then my eyes were struggling to cope with the LED lights on the machine. I finished up as quickly as I could and then lay down on the sofa. Slowly over the space of an hour the pain eased. Although that was a good thing, it also chilled me to the bone as only a CSF leak headache eases so quickly on lying down. So my worst fears had been confirmed.

When Jay got home from work I spoke to him about it. He replied with "well don't panic just yet you get days where it plays up more than ever". Whilst he was right , this was different, this was stronger than it has been before. I could hardly blame him for trying to be optimistic maybe I would have been had I not already suffered two migraines that week and forgotten to write a blog post. It hadn't been a good week and now it was getting worse. I replied that yes he was probably right and maybe a good nights sleep would help. I really hoped that it would be but I knew in my heart that it wouldn't.

On waking up on Friday morning, I didn't get the electric shock like feeling like I would back in 2016 when it was at it worst. I managed several hours upright before the pain started. I am afraid I pushed it and stayed up longer than I should have done. I did exactly the same on Saturday, staying upright and not resting like I should have done. I don't know why I did it. Probably I was in denial and I was determined I wasn't going to let a "little" thing like a leak get the better of me. There were things I wanted to do, I refused to go back to the dark place I was in, during 2016. 

However health problems don't work that way, when things are bad you can't pretend they aren't happening. There is no distracting yourself from the pain when you have a CSF leak as the longer you try to ignore it the worse it gets and it wont stop until you lie down. If you push it too far eve lying down won't stop it. From Friday I had increased my salt intake upping my salt tablets back to 10 a day, I had also increased my caffeine intake. Both caffeine and salt increase CSF production.

With the Menopause involved this time increasing caffeine has the added bonus of triggering hot flushes. The more caffeine I consume the worse the hot flushes are getting. Which is just fucking fantastic as caffeine is the only thing that helps quite quickly. So I spend the whole time stripping off due to getting overheated and then no sooner has the flush started I am then freezing cold. Hormones have a lot to answer for.

By Sunday I had completely blown it, my head felt like it was in a vice my eyeballs felt like they had been set on fire every time I looked at my phone, used my laptop or watched the TV. I ended up spending all day lying down either in bed or on the sofa. But as like in 2016 and 2018 ( my first re-occurrence of the leak), my back due to EDS wouldn't let me do more than 12 hours flat. I felt so down about the pain being so bad and I really felt like maybe I had been an idiot fighting against it for three days . 

Thankfully 24 hours of lying flat has got it to a better place but I am still having to lie down much more than I want to. I managed 4 hours upright on Monday and 3 hours on Tuesday before lying down.  I was much more careful on Tuesday ( today) as dog training is re-starting . With it being held in the evening which is my worst time for the head pain, I am having to rest a lot to ensure that I don't end up having to battle through the pain whilst there. 

To add a little variety into the mix at 6.50am I woke up in agony with bowel adhesion pain. I keep getting bouts of it out of no where. I ended up having to wake Jay up so he could get me a drink and a hot water bottle as I couldn't move without making the pain worse. I took some Buscopan, Oramorph and thought there would be no way I would get back to sleep and then the next thing I knew it was 9am and Dembe was snuggled up beside me. I can't work out what the hell is going on with this year. It is exhausting me with all the plot twists. If my life was a TV drama most people would be complaining it was unbelievable, no one is that unlucky....I've also lost my hospital consultant as the health authority he works for has decided that he is not allowed to see patients outside his catchment area. The hospital I used to go to before him, has no PoTs clinic at all as the consultant has retired. So basically if you are outside Plymouth you have been thrown ti the wolves.

But apparently my health needs no consultant input, as I am such an easy patient to manage! I hate 2020!

Sumatriptan positive news

Like clockwork my migraine arrived within the predicted timescale, which is every month between 18th - 22nd. It started around midnight but as I was half asleep and I didn't twig, I just thought maybe it isn't as the pain wasn't intense it just felt like my sinuses had become a bit stuffy. However by 2am it was clear with every passing minute the pain was becoming more intense. I panicked a bit thinking I may have missed my window of opportunity with the sumatriptan.

I am so thankful that I put my migraine grab bag together, it sits on a shelf beside the bed with all my medications. Inside is a bottle of water, a pint sized plastic cup, soluble paracetamol, soluble aspirin, buccastem and sumatriptan. Having it all in one place means I don't have to fumble around trying to find various medications. It is all in one place, plonk the soluble tablets in the cup, tip in the water and then take them and the sumatriptan. Then shove the buccastem between my gum and my top lip. Turn off the bedroom light and go back to sleep. 

Migraine grab bag

Previously I would take the medication I had, then spend the next couple of hours trying in vain not to vomit them all back up. By 4.30am my migraine had subsided to just a headache and I was up chatting to Jay, having a cup of sugary tea as my sugar cravings and crazy hunger kick in straight after a migraine subsides and vomiting is no longer on the cards. I did go back to bed at around 5.30am and slept a few more hours.

I really didn't feel well all day, quite spaced out and didn't quite suss out that with all the drama of having a migraine I had forgotten to take my morning medications. I was quite lucky in the withdrawal symptoms weren't that bad I just felt unwell. 

The protocol I have been following with the supplements says that you won't notice any change in your migraines ( severity or frequency ) until you have been taking them for a period of at least 3 months. So I was expecting to have a migraine this month. I had felt the warning side of a cranky bad mood ( to me it feels like bad PMT and feeling and getting angry with inanimate objects) the day before which seems to be the only warning sign that I get.  It always seems to be the day before that this strange mood hits where nothing is right and everything is conspiring against me. I have identified this now with the last two migraines now that I am tracking them with more detail. There is no food trigger as my diet is pretty similar each day to the next. With it always being within that date range I would say that it was more than likely hormone based. Despite the fact since coming off the pill in December 2019 there has been zero sign of any menses.

My migraine tracker

As usual my memory of Saturday is pretty hazy other than the fact I was ravenously hungry all day and extremely tired. I remember Sunday which is better than normal, as usually I lose a few days worth of detailed memory. Sunday I still didn't feel 100% and managed to pass out whilst trying to get on the floor due to feeling like I was going to faint. Resulting in a bruised bum and a Labrador sitting on me refusing to allow me to get up again until he believed it was safe for me to do so. The signal that it is safe, is Dembe going and getting me a toy from his toy box and wanting to play. Until then he will prevent me from even sitting up but sitting on my arm or throwing himself across my chest. This isn't something we have trained him to do but something he does instinctively and I am incredibly proud of our boy.

It is fantastic news that the sumatriptan  is working so well for me and it has taken away some of the fear that had been surrounding the next migraine attack after the one in May been just so bloody awful. I am noticing with the magnesium supplement that I am sleeping an awful lot better, which is great as for the first time in years I am not spending hours awake in the middle of the night. So it is positive news on multiple fronts for a change.

My special boy

End of my tether

It seems to be one thing after another at the moment and if you are bored reading it you can imagine how tedious I am finding living with it? The week after my unhappy hump day went reasonably well. I only needed two days on the diazepam and then it was taken as and when needed. I was bobbing along quite nicely until 4.20am Tuesday morning when I woke up with that familiar sinus pain like I had been smacked with a shovel and a distinct lack of balance that let me know Tuesday was just going to be awful. I had a migraine and this one was going to be an utter bastard.

I fished out my neck collar, took what pain medications I could and propped myself up on my pillows hoping that I had done enough to limit the attack to a few hours. However it wouldn't have mattered what I had done yesterday this migraine was going to rate number 2 on the worst migraines ever - number one having taken place in either February or March and left me with amnesia. I didn't drink or eat for well over 16 hours because even the thought of drinking made me want to puke and although my stomach was burning, I just couldn't eat as I again felt so nauseous at the prospect of eating that I just had to ignore the rumbling stomach and hope that I wasn't sick from being hungry.

I don't remember a lot of yesterday, I remember at around 9am shouting help because Jay hadn't twigged that anything was wrong and hadn't bothered to check on me . He thought I was having a long over due lie on. I couldn't roll over to grab my phone and I couldn't think what to shout to get his attention. I was also having diarrhoea at this point (not in bed thank goodness but had resulted in 6 trips to the bathroom where I had stumbled clinging onto the safety rail) which was really fun when any smell good or bad was making me wretch and of course my shit smelt of roses and rainbows LOL! My head also felt like an axe was attempting to cleave it in half every time my head left the pillow. Help indeed was needed, but what could be provided was limited. Hot water bottles and a basin were brought to me. Thankfully I wasn't sick but Oh how I wanted to be. 

Without being melodramatic the pain was so bad yesterday there were points I wanted to go to sleep and just not wake up. I have been through the agony of a CSF leak and although that was awful there was always some relief at some point. There was nothing yesterday the pain was just unrelenting, the light was too bright but my face was too sore to wear sunglasses. I was sweating and then I was freezing cold. I wondered if I had contracted meningitis. I did actually consider calling 999 for an ambulance but I couldn't bear the prospect of being poked and prodded, expected to answer questions and be in a noisy environment. You know you are poorly when you don't want to move and you don't care that you should be calling for help.

At some point during the morning I heard them talking about oxygen on the radio ( I'm very lucky that I don't need complete silence during an attack just a darkened room) and I remembered oxygen always helps me when I have a migraine. Another plaintive Help was shouted and Jay sprang into action set up my oxygen machine and got me hooked up to it. He also got me a bottle of water because the orange squash he had given me was turning my stomach and after each mouthful I wanted to bring it back up and more. The oxygen did help it lowered the pain level to an 8/10 instead of the 10/10 it had been since 4.20am

I spent the majority of the day in bed. At 1pm I got up because my back was killing me. That was a dreadful mistake after an hour I went back to bed and straight to sleep despite the pain. I got up again at 4pm and managed to have a drink, then I was so thirsty I couldn't stop drinking and then I was ravenous with the post migraine munchies. I could have eaten my body weight in whatever food you brought me. I was despite sleeping all day fucking shattered. I went back to bed again at 6pm tried watching some tv but having jolted awake three times in 30 minutes gave up and slept solidly until 1am.....and was then awake for the rest of the night. I managed to get an hour of sleep between 7-8am this morning.

Today is brought to you by the letter C - for Coffee. I feel like I am floating I am so tired. I have managed to sort myself out and have a shower with Jays help. Honestly I was honking after sweating so much yesterday. My autonomic nervous system was going mental. I feel like I have taken too many pain killers as my head is floating and my face feels like it is sticking out 3 inches further than it is. I am going to put a letter together for my gp telling them I can't go on like this. Just thinking about the fact I will have yet another migraine next month is making me cry. I have been tracking them on my phone and they happen at least once a month and always between the 18th -22nd of the month. It isn't fair on me for these to continue to happen and it isn't fair on Jay as he can't take one day off a month to look after me as I am so ill I can't do anything for myself. 

People also seem to be under the impression that you have the migraine and then like magic you are back to normal again, in reality it can take me several days after a severe attack to feel like I am functioning anywhere near normal, so it's not just one day a month I am losing but 3 or 4 depending on the severity.

From what I have briefly read up during the early hours of this morning around 40% of women find their migraines worsen during peri-menopause and menopause. Even in the absence of menses there is still a very slight hormone fluctuation which can be enough to trigger a migraine. Which would be my case. I stopped my contraceptive pill in December as I wanted to see if the menopause fairy had joined me and it has now been over 5 months and there has been no period. Yet my migraines will always occur since stopping the pill between the 18th - 22nd of the month without fail. Occasionally like this month I will get two migraines, I had one last Tuesday, so exactly a week apart. I am at the end of my tether with it. All I want to do is cry but whats the point? It won't change anything. I need specialist input now so I am going to write to my gp as due to Covid-19 I don't want to go to the surgery unless I have to and ask if they ever did contact neurology like the doctor said she would and if they had suggested some medication as continuing on like this isn't an option. I'm at the end of my tether with it.

Women Glow...again

Back in July 2015 I wrote the blog post Women Glow - https://wp.me/p4zBAs-c5 in which I talked about the night sweats I was having. I eventually worked out that the blood sugar was dropping whilst I slept and this was causing me to sweat profusely overnight. It wasn't uncommon for me to have to get changed 4 times, which lead to very interrupted sleep and a feeling of constantly being dirty and smelly. Neither of which I was.

Fast forward 3 years and now I have the problem of glowing quite profusely in the day time. It started back in 2017, initially I put it down to having gained so much weight in the previous 12 months but now having lost 3 stone (42lbs / 19.051kg) and the sweat is still pouring from me - if not worse I have to admit it's not the weight causing the issue. I personally believe that this is probably the start of the menopause, I'll be 45 next week so I'm in the right ball park. I can't tell you the state of my periods as having been on cerazette for many years they haven't paid me a visit since Christmas Day 2015. I am loath to come off the pill to find out because a) I will be an emotional mess, b) I could start fainting multiple times a day risking injury and c) periods for me are horrifically painful. The last time I came off the pill back in 2011 I had a period every 20 days. Gee that was fun, so you can see why I am not keen to experiment. Although I know at some point I am going to have to, just to know what is going on.

There is nothing that I can put my finger on that makes these sweats / hot flushes worse. I literally sweat from my knees to the roots of my hair. My face at times will go bright red. The heat I generate is quite exceptional for someone who has spent their life complaining they are cold. I had my reading glasses on top of my head the other day whilst a flush was happening. I moved my glasses to use them and both lenses were steamed up with condensation. I can't lie the flushes are making me miserable.

They seem to get worse when I am exposed to heat - which is massive pain in the arse especially when my go to pain relief is using a hot water bottle. I am using one at the moment and the sweat is pouring off me. I have lost count the number of times I have had a shower, got dressed dried my hair - the heat has triggered a hot flush and I have ended up having to change all my clothes because I am wringing wet, down to my knickers. I know it's an attractive picture I paint. Some days after spending ages sorting out my hair I have sweat so much its become a curly mop so I just have to tie it up in  a hair band. I don't have the energy to wash it and style it again. I really hate it as it leaves me feeling dirty and smelly. Jay assures me I am neither but I feel so unclean and when you don't have the energy to wash again - and what's the point the heat will just trigger another round of sweating? It can start to really get you down.

You may think I am being melodramatic but when the sweat is dripping off the hair on the back of your head  making it look like you've run a marathon or its dripping from your top lip, you'll understand. This isn't a pleasant glow on a warm day this is full on looking like I have taken a shower in my clothes. All my life I have barely sweat and now I am making up for 40 plus years of being bone dry. 

I have raised the subject of the menopause with my consultant and my gp. Both have laughed and tell me I am too young. I think this is due to EDS, unless people check my date of birth they forget that the person sat in front of them is not in their 30's but is now rapidly approaching her 50's - lets face it folks from next Thursday I am halfway there. Back in 2015 I had a blood test that showed I was producing luteinizing hormone. Unfortunately due to having a CSF leak it wasn't investigated further. This showed that my ovaries were not working at all which is premature ovarian failure. At the time it was when all my bloods were strange raised prolactin, low cortisol etc etc. I have no idea if it has been tested since. 

I know the sympathetic nervous system is responsible for sweating but I doubt that this has just suddenly decided to go awry. It is more likely given my age that this is the perimenopause or the menopause. But as the NHS now no longer tests for this how the fXXk will I ever know?

As a precaution I have bought a load of supplements - sage leaf, red clover and black cohosh and if these help at all I will report back here. If they don't I bought myself a pack of 12 flannels that I will make damp and put in the freezer - these will be my emergency cool down packs as keeping the fridge door open to cool down is a waste of electric and a risk of food poisoning! 

My other go to is to have a fan going whilst I  get my hair dried to try and relieve the sweating and dry it up before my hair gets frizzy. I hope to god the supplements help as I am on the verge of melting into a puddle.