Occipital Neuralgia

 I had a really shitty week last week, 3 days feeling crap after the flu jab and then Occipital Neuralgia reared its ugly head with one of the worst flares I have ever endured and it is still bad now as I write this.

Occipital Neuralgia is something I have dealt with for years. From about the time I was a teenager I would get random electric shock like pain in the back of my ears. It would happen so infrequently I never did anything about it. The pain really did make me take a sharp intake of breath, if I was talking as it happened, I would have to stop and wait until the pain subsided. I was lucky I would maybe get a hour with 5 or 6 bursts of pain and then it wouldn’t happen for months or weeks. It was like that until I had my spontaneous CSF leak and then the sharp electric shock like pain was accompanied by a constant throb at the back of my head that sends my forehead into spasm, which in turn triggers migraines. Last week was utterly miserable.

This link, if you go right to the bottom of the page shows where the Occipital Nerves run and basically that is exactly where my pain is. https://aneskey.com/occipital-nerve-block/ . When I had my spinal fluid leak I would have regular lidocaine injections into the back of my head along the path of the nerves. It would be weird for a few hours when I had no feeling whatsoever in the back of my head / scalp but it would disrupt the pain signals for long enough that I would get up to 6 weeks with much reduced pain. Since 2016 I have had the odd flare up, where I have had the electric shocks and the painful scalp. The end of last week was off the charts pain wise.

The pain starts at the base of the skull, you can see on the diagram from the link where the occipital nerves start. That area is hot and painful to the touch, the pain then goes all the way up the back of my head. Sometimes it is sharp pain most of the time it is a deep burning throb that gets worse when anything touches my head like a brush, water from the shower, a pillow. The pain when it is bad is accompanied by my neck getting very stiff and crunchy.

I very rarely cry from pain. Pain is exhausting enough without adding in crying. Last Friday, Saturday and Sunday I cried from pain and I can’t remember the last time I did that. Friday and Saturday were spent in silent tears. I didn’t know what to do with myself. Pain had me retching, distraction techniques weren’t working, nor was my usual trick of a hot water bottle on the back of my head. The pain made me feel very, very depressed, it sucked the joy out of everything. If I could have paid someone to give me an occipital nerve block on Saturday I would have emptied my bank account to have it. 

I was trying to work on some Christmas presents but I had to give up because I couldn’t see what I was doing due to the tears. To have pain that you know no matter what pain relief you take it wont go away is soul destroying. I couldn’t think, I wanted to be sick and I knew going to bed wouldn’t help because that would mean lying with my head on a pillow which was just too uncomfortable to do. Not sleeping exacerbated the pain and the feeling of helplessness. I can cope with a lot of the shit that is thrown my way but when I am not able to manage it, I get despondent pretty quickly. Because at the moment accessing healthcare is a nightmare. Everyone I know with a chronic illness is having to manage their own conditions for months at a time with no external input. So when the pain was at it’s worst on Friday and Saturday the thought of having to be in this amount of pain for possibly months at a time filled me with dread.

The good news is that it has dropped down a few levels, it is still very sore, I am still not sleeping due to it. I spent midnight until gone 4am wide awake last night. I only got some sleep because I ended up taking a diazepam ( well half of one) but I am running out of them ( they only allow me to have 21 every few months due to the fact they are so addictive). I have one tablet left which means I will have to pick my time wisely. Due to this fact I have invested (again) in a CBD oil vape in the hope that this will take the edge off the pain when it gets bad. At the moment I am willing to try anything at all to get this pain under control. 

I have contacted my doctors surgery and asked the question if anyone at the practice can do occipital nerve block injections. I know one of the doctors that has just retired used to do a friend of mines injections on a regular basis. I am wondering if any of the remaining doctors or the new ones that have just joined the practice are able to do it. I need something as The lack of sleep and constant pain is taking its toll.

Another piece of good news is that my referral for the Spinal unit at the hospital has been accepted and I have an appointment next week. I don’t know if this is for a physio or an assessment. It is being held at the Orthopaedic unit, so I know there is a multidisciplinary team there with physiotherapists and surgeons all working together. This referral is for my neck as since the RTC in August I have had problems with my neck and my left arm has pins and needles / altered sensation. So maybe if I get no joy from my doctors practice I can get the occipital nerve block injections at the hospital. What I really don’t want is to be put on Gabapentin or pregablin again as both have never really done anything for me in the past and Gabapentin made me like a zombie. 

So fingers crossed I can get some help resulting in some relief from this as at the moment I am struggling with this.

Update sadly my local doctors surgery doesn’t do these injections. I would cry if I had the energy.

Flu Jab

I have been having my flu jab for years now, so when both Mr Myasthenia Kid and I got text messages asking us to book our flu jabs in, we did. I have always laughed at people who have said that they have “got the flu” or “been really poorly” after having the flu jab. After all the flu vaccination is an injection of dead virus so it can’t multiply within the body and become anything. However it can provoke an immune response which can make you feel ill (for more info ) but it isn’t the flu. For years I haven’t had any response at all to this injection, yet yesterday within hours of having it I felt bloody awful. I had to laugh for it served me right for not believing other people when they told me it made them ill.

This years flu jab was done in a completely different way from last year when we all queued up in the surgery and went into what ever room became free when we got to the head of the queue. Due to Covid-19 this kind of mass vaccination system just wasn’t possible, social distancing and disinfecting in between each patient, plus changing scrubs etc would mean that it would take much longer to vaccinate much fewer people. So in my small town all the doctors surgeries got together and put on several drive through clinics.

In a car park near the seafront they had installed some all weather marquees, inside which they kept their supplies . The car park had stewards that were all volunteers from the community who were all kitted out in wet weather. The day before the weather had been utterly hideous, torrential rain and windy, so they most definitely needed the wet weather gear. As you pull into the car park you tell the steward what Doctors practice you belong to and they then tell you which area you have to go to. It is all clearly marked with people signalling to you where to go. Everyone was super polite and helpful and I can’t thank them enough for giving up their time at the weekend to ensure our towns population who needed a flu jab got one.

We were directed to station 8, where we were greeted by two members of staff, we had paper work sent to us a few days prior that we filled in, so we passed that to them. The injection itself didn’t hurt in fact I didn’t even realise it had been done. It is the first time I have had the flu jab and it not be painful in any way. When I say painful I don’t mean rolling around in agony but you know the normal feeling you can get when you have an injection into the muscle. I felt nothing I just heard the gushing noise of the liquid in the vial. Even Mr Myasthenia Kid was brave and barely noticed it. Just like that it was all done and we made our way home.

I felt a bit strange on the way home in the car, a bit under the weather . I just thought it was psychosomatic and ignored it. A few hours later though I was feeling distinctly unwell, the glands in my armpits were aching and my legs felt really shaky every time I went to stand up. I felt like I was coming down with the flu ( obviously I wasn’t this was an immune response to the injection ). An hour or so later everything was aching, if I had the energy I would have cried. I was worried more that I had got Covid rather than a reaction to the flu jab. I like a lot of people when feeling rougher than normal are immediately panicking about Covid-19. My rational brain kicked in and realised that it was the flu jab and quite a common reaction to it.

I was struggling to stand and walk my legs felt so unsteady and moving my arms hurt. I felt the sickest I have felt in a very long time but bizarrely had no temperature. I didn’t feel cold or flushed, I just felt really drained and sore. It got to the point where I knew that this was just stupid trying to ignore it and not admit that I was feeling like I had the flu starting. I can only describe it like that because that is exactly how it felt minus the temperature which I didn’t have. I kept asking Jay how he felt but he kept saying he was fine and had no side effects at all.

 I was so tired that I couldn’t keep my eyes open. By 6pm I decided I had to go to bed and by 6.30pm I was asleep. I was so exhausted that I slept for 12 or so hours with only waking twice. The strength of the reaction surprised me and I can understand why people think they have contracted the flu after having the vaccination. The next morning I felt ok until after I had a shower and then I felt very tired again. By 4pm I was feeling like a zombie and again I was in bed really early. By Tuesday the reaction had subsided significantly, I was left feeling a little achy and out of sorts.

I mentioned on social media that I had reacted to this years flu vaccination for the first time ever and several friends responded saying that after years of having the flu jab and having no side effects, they too had reacted to this one. No conspiracy theories here,  just obviously some of my friends reacted many others who also had this years jab didn’t react. Would it put me off having the flu vaccination again? no it wouldn’t. Having had the flu twice in the last ten years and both of us being stuck in bed for 5 days I know how bloody awful it is. What I felt on Sunday despite it being quite awful was still hundreds of times better than I have felt when I have had the flu. So a few days of feeling under the weather compared to feeling awful, ( some times I have wished for death fleetingly when really bad with the flu ) and being stuck in bed for a week, are worth it as far as I am concerned.

It is now Wednesday, the muscle aches have gone, my arm is still a little sore at the injection site. I am still crazy tired, this has been an ongoing issue for a while which I am trying to get to the bottom of. I have started taking a few supplements to see if they help at all. It has been quite a long time since I have felt this tired continually. I am going to try very hard over the next few days to remember to take my medication for increasing my blood pressure ( I am useless at taking medication throughout the day I just forget). I am hoping taking that might solve the mystery of why I am constantly exhausted at the moment. Fingers crossed.

A Cold Wind

I have written many posts about my body being a human barometer and I am hesitant to do it again but I am in so much pain today it is ridiculous. I am worried about repeating myself. I hate this time of year simply due to the fact the temperature / weather patterns are constantly in a state of flux. That means air  pressure drops and rises sometimes in the space of a day and it leaves me in so much pain it can’t be ignored.

As always I try to keep moving, I have found keeping moving although painful, is the lesser of two evils. Staying static will cause problems later in the day, by limiting movement it will cause me to seize up, making movement more painful in the long run. 

I seem to say the same thing over and over to Mr Myasthenia Kid, which is “can you close the back door please?” Small drops in temperatures cause me pain. It sounds melodramatic but it has always been the same. A cold draft or a subtle change in temperature is enough to start the pain off in my legs and I will be stuck with that pain all day. When I say legs it is in fact my lower back all the way down to my toes. The only way to combat this is to stay warm and avoid those changes in temperature, it isn’t always easy as even just a breeze that is a degree or less cooler than the temperature I am used to is enough to cause me pain. 

It causes arguments in the winter, as in closing the back door and in the summer when hubby likes to have the air conditioning on full blast. I hate the fact that changes in temperature and air pressure hurt me. It makes me sound like a delicate flower which I certainly am not.  Once cold my legs will take hours to heat up again, they go white and feel cold. One way to improve their temperature and reduce the pain level is to go to bed and put the electric blanket on its highest setting. Another way is to have three hot water bottles, one on my lower back and the other two under each bum cheek. Quite often during the winter I will be wearing tights or leggings under my jeans if I have to leave the house. In the summer it means I rarely wear shorts or cropped trousers. Wearing anything that exposes my legs means they are more at risk of experiencing a change in temperature and that will cause pain. It means I spend the summer always feeling ridiculously over dressed and on some occasions way too hot. But it is the only way to prevent the pain, the pain is a million times worse than getting over heated.

The weather has been abnormally mild here in the UK for the last few weeks. Normally by now we would have the heating on but the temperatures have been abnormally high and now that we have a dog that doesn’t open the back door at night and leave it wide open making the whole house freezing, there really hasn’t been a need to have it on. Today however the temperature has dropped a bit and it is really windy so the house is feeling colder. So despite the fact I haven’t been outside the weather changing so suddenly has left me in a lot of pain.

I describe the pain in my hips as feeling like someone has removed my hip joints and replaced them with metal spikes. Every movement of my legs makes it feel like the bones v  metal spikes are grinding together. Sometimes it is enough to make me throw up, there are no painkillers that will stop the pain I have to wait until the cold is out of my bones ( well that is how I describe it ). It is one of the reasons why I always wear socks and slippers as getting cold feet will also set the pain off. 

This is something that has definitely got worse as I have got older. Years ago I would jump in the bath and get warmed up, now that option isn’t available to me as we got rid of the bath and had a shower cubicle installed as I struggle getting in and out of the bath. I really do wish ( more so ) in the winter months that we still had the bath just so I could get in it and drive the cold out from my bones. I sound like an old lady but this is something I have always had and never been able to explain it. Although when you talk about it to someone else who suffers the same way they understand you immediately. It is like a bit of weirdness that you thought was only yours isn’t so weird and there are others who are the same. It makes it a less lonely space to occupy.

As soon as Dembe gets back from his walk with his dog walker ( hubby is on a late finish ) I will be getting into my PJ’s and covering myself in my electric throw and hot water bottles to try and get the pain to reduce.

I would love to know what causes this pain reaction to changes in temperature. I don’t know if it is part of Raynaud’s disease (more info here ) or part of Ehlers Danlos syndrome. I just wish there was something that would reduce the pain quickly when it starts. All I know is that when a cold wind blows I am in serious amounts of pain.

New Things

Six weeks ago I did something crazy. It had been in my head since before Christmas and I had been spending an age mulling it over too scared to say it out loud. It took until after Christmas for me to even say to anyone what I had been dreaming up.  One day I mentioned to my husband what my idea was, he assured me it wasn’t that crazy and that if I didn’t try I would never know.

To some this idea won’t sound that crazy at all but believe me it sent my anxiety into over drive. My big plan. my crazy idea, wasn’t really out there at all. I just wanted to start up a monthly coffee morning for like minded crafting friends who would like to learn new skills, solve a craft problem, get hints and tips etc. I will be honest  through 2019 I was a bit of a hermit, some of it self imposed, some of it well read my post Reflections and you decide. I was going months and I mean months without seeing anyone other than Mr Myasthenia Kid or Dembe. Ok so that is a bit of a half truth there as we were going to dog training but a 5 minute conversation once a week with someone other than my husband is not socialising. Especially when the topic is just Dembe or dogs in general. My mental health was being crushed, although creatively I had never felt so fulfilled as my sewing / embroidery had taken on a new direction. My anxiety was really getting bad around social interactions because I literally just wasn’t seeing anyone.

Chronic health conditions impact so much of my life, it limits the time I can spend doing it. I would love to run a small business selling items but my body couldn’t cope with the work load that something like an Etsy shop would produce. I can’t do craft fayres as I couldn’t sit there all day without then being sick and exhausted for weeks after. Crafting is my life it gives me the reason to get up and keep going every morning. Without it I would be very lost. However part of crafting is sharing your triumphs and disasters. Whilst there are various Facebook groups ( some of which are very supportive, others are like a nest of vipers) it isn’t the same as actually speaking to a real live human being. I can no longer drive as I lost my driving licence 5 years ago due to my medical conditions. Public transport is too hard going for me. I rely on Mr Myasthenia Kid if I want to go anywhere so attending guild meetings hasn’t been easy due to his work schedule. I wanted something that combined my love and appreciation for all crafts and a social atmosphere. So I took the plunge.

I knew the name I wanted for the group – “The Stitchin’ Bitches”, I also knew due to the size of my house numbers would have to be limited, if anyone wanted to come at all. A friend of mine reached out regarding a crochet issue she was having, we are both self taught and only in the last few months. I casually mentioned in my response that should I start up a group for us to meet and discuss our crochet ( and other crafts) would she be interested. She almost bit my hand off, she would be extremely interested in it and what a good idea. 

Even though I had this positive response I still left it at least a week until I built up the courage to put up a post on my Facebook timeline asking if there were any like minded crafter’s like me that wanted to meet up on a monthly basis and do crafts together. Be it crochet, knitting, embroidery, sewing. I had a lot of responses but it was from people in different parts of the country saying that they wished they lived near me as they would be there like a shot. Initially responses from local friends was slow, embarrassingly so. I was starting to think that maybe there wasn’t any desire from any of my friends ( other than the first one I spoke with). Determined not to take the lack of response from my first post as the definitive answer I posted several more times. Each time I got responses from people outside the area that I lived , even the friends I have made world wide via various health forums wanted to come. But in the end I had 4 people interested which was a good number – remember I live in a tiny house.

I set up a private Facebook group for us all to be able to post in and then set up a poll so that they could let me know what days suited them best to hold a meeting. I had envisioned when I first embarked on this idea that it would be one hour a month – which for me was fine as it would give me time to recover and give me some social time. We decided Mondays were best and set the date for our very first meeting of The Stitchin’ Bitches – they all loved the name by the way! I think we sort of sound like a Country and Western group LOL!

Initially it all seemed fine until my anxiety kicked in the day before our first meeting on Monday 10th February. I was just terrified that the meeting would be a flop, that people wouldn’t speak to each other or that after 30 minutes people would be racing to get out the door. I was so anxious I barely got more than 2 hours sleep, I tossed and turned all night. This would be me hosting an event ( thankfully all my friends know I am poorly and will pitch in with making drinks etc if needed)  without my safety blanket of Mr Myasthenia Kid. Also some of the people attending I hadn’t actually seen since I left work in 2008. For me it was a huge gamble. I am always really anxious when people come to the house anyway, I worry that they think it is dirty or uncared for etc. Its hard to keep on top of stuff when you aren’t well and all the DIY stuff falls on one partner. So I know there are some places crying out to be redecorated etc. I was also worried about people judging me, on the outside I don’t look sick but every day is a battle of some sorts. I worry that people think I am taking the piss because no one ever see’s me when I am really poorly.

Monday 10th February seemed to come around so quickly. By the time 11am arrived I was pretty knackered just from the sheer anxiety creating this “event” had caused. I really shouldn’t have worried. I also wasn’t the only one who had been anxious, a friend confided in me on leaving she had been terrified to attend. As for thinking they would all be racing for the door at 11.30am nothing could have been further from the truth. It was 13.30 that the last person left and the first person had only gone around 15 minutes before that. I had been concerned due to the fact that we all had one work place in common that we would end up discussing that but again nothing could have been further from the truth. It was barely mentioned and that was only as people left. It was just so lovely to have a few hours with people whose eyes didn’t glaze over when crafts were mentioned. I know I can get very passionate about my projects, so it was nice to answer peoples questions about the techniques I had used etc. It was equally nice to see what my friends had been up to. For all of us it was so uplifting to get out of the house and socialise – obviously I didnt go far!

The really nice thing was that as the meeting / gathering was drawing to a close one of the lady’s said “Rach, any chance we can do this once a fortnight? I don’t think once a week is enough”. Everyone else was in agreement also. I said immediately that no one would “have” to come to every session especially if they felt fortnightly was too much, that I was happy for people to dip in and out as needed. But the buzz the morning had created was so great that we set up the next few weeks worth of meetings. I was so proud of myself and what our little group had achieved. I posted on my Instagram account about it and now several other people dotted around the country have decided that they are going to do the same thing. Which is really lovely as it is such a boost for your mental health and to stop the isolation that is all too common in the world.

Today (Monday 24th March) we held the second meeting and today we had the grand total of 7 people here (including me). Dembe was like a dog with two tails, with all the love and fuss he got from everyone. Today two members learned how to start to crochet – slip knot, chain stitches and then double crochet ( UK ). Another lady had a refresher on crochet and learned how to do a Granny Square for the first time. In the corner a lady was being taught to knit. Mr Myasthenia Kid is on holiday this week from work and made himself scarce for a bit having a wander around the town. However he said the buzz and positivity he got from the room when he came home was amazing. He said he was so proud of me for being so brave to try and do something to end my own social isolation. He did make us all laugh as when he walked in he said “good god is this the budget version of the Playboy mansion”. Considering our age ranges were from 21 to 70’s it was hilarious. 

We were also spoiled by a new member who brought homemade scones, jam and cream for us to have as a crafting snack! And bloody gorgeous they were too. I had decided yesterday to make everyone little paper tissue holders as a way of saying thank you for coming and making it such a success. 

I can’t lie after every meeting I have been utterly exhausted. If I knew that it wouldn’t impact my nights sleep I would go for a nap in the afternoon. Mondays after are written off with me having a lazy restful afternoon on the sofa but mentally I feel so uplifted and happy. I am so glad that I pushed myself to do something totally outside my comfort zone and I hope I inspire others to take that chance and do new things.

****

On Thursday 20th February, I had the worst migraine I have ever had in my life. It was so bad that I am actually suffering from amnesia caused by it. I have “lost” most of Wednesday 19th, the majority of Thursday 20th, Friday 21st quite a bit is unrecoverable as is Saturday 22nd.  It is only from yesterday on-wards that I can recall anything that happened during the day with any clarity.  I won’t lie this has scared the shit out of me. Which is why I haven’t done a huge detailed blog post because basically I don’t know what happened to last week. I have a gp appointment booked because I need to know that this was just a horrific migraine and that I can be referred to see a headache specialist or if it was something like a TIA that can also be looked into. Having Google at our finger tips can be a curse and a blessing but as I can’t account for much of last week and this has never happened to me before with a migraine I can’t just ignore what has happened. Anyone who knows me also knows that I don’t run to the doctors every 5 minutes so it has really shit me up.

As soon as I know you will know.