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 it will stay with me 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.

Birthday Week

 It has been our birthdays this week, so all my routines are out of whack! We have managed to enjoy ourselves despite the imminent lock down happening, well on the day this blog post will be published.

Mr Myasthenia Kid is on holiday this week so managing to mostly avoid the pandemonium which is his workplace at the moment whilst the panic buying has begun again. 

I am absolutely shattered after two days of celebrations, I am getting too old for this shit. It was great seeing a few people, who made our birthdays really special - hilariously Mr Myasthenia Kids mum forgot it was his birthday. She rang to speak to him and he thought she was ringing to say happy birthday!

We had some lovely gifts, lots of cards and many many wonderful messages.

I made the Happy birthday banner a while ago, I am rather pleased with it. It will be out again on 16th November when it is Dembe's 2nd birthday. How can he be two already ? It is just crazy how quickly that has gone by. His dad and I are still deciding what we will be getting him for his birthday!

Exactly a week after my birthday it will be my dad's 70th birthday, due to lock down I won't be able to spend it with him which is sad. I will speak to him on the phone and possibly video call him.

The favourite gift I got Jay and the one I nearly accidentally told him about on numerous occasions was his personalised Labrador print.

It says at the bottom Wet Kisser, Body Wagger, Toy Bringer. I wanted it to say Wet Kisser, Bed shagger, Toy bringer but decided it was too rude and could be embarrassing when we have visitors, although it is highly unlikely the vicar is likely to pop around for tea any time soon.

Anyway it is just a short post this week whilst I am recovering from our birthdays.