Migraine treatment – one week on

So today I am one week on from the GON block injections, and I have to say the difference is both impressive and interesting. I’ve found that my daily migraines are now in a bit of a routine, which is intriguing as a point of seeing how they are functioning. The left side feels a bit fuzzy or muffled, as if I can tell something is trying to keep a lid on the migraine, but regardless of the sensation, it is doing so. The right side being treated is now what I am focusing on. There is a bit of a timeline throughout the day, starting off as ‘fine’ and getting worse over the course of the hours. This is all dependent on factors such as how much I’ve used my eyes and how much light I’ve been exposed to as well.

But although my last blog post regarding the treatment as a bit negative, I now think this is the rhythm we’re going to be staying close to, and as much as it is still problematic, it is a big improvement. I still want to fill my skull and eye socket with ice but there is one side of my vision working better than it was. This in itself will be really interesting to see how things work out with both sides of treatment, and the recurrent treatment as well.

The pain I am in now is obviously one sided. There is a thumping in my temple, a sharp vicious pain behind my eyeball, and a pressure on the top of my head. The side of my skull keeps panging, and it feels like electric jolts are being sprung through my brain from the base of my skull. Not to forget the dizziness, nausea, or ringing in my ears.

That all said, it is only in my right. It gets worse as the day goes on, and if I don’t sleep or at least ‘reset’ my eyes under an ice pack or eye mask, it gets quite unbearable, but that is very normal for the standard of migraine I have.

In all I’d say this treatment has made a real difference to my life, and now I’m used to the cycle it has caused, I can adapt to prepare for it on a daily basis. Still 200% sure the treatment was worthwhile, and will be anxious to see how long it works for.

I was migraine free this morning

Buuuuut guess who’s back?

Of course.

Hello migraine. You weren’t missed.

I don’t know whether I’m right but in my mind it’s one of four things:

  1. Hormonal migraine – hormonal migraines work in a different way with me, and whether science would back up my life I’m not sure but it’s true. The worst, most intense, likely-to-vomit migraine moments come when I’m due on, and in the first days of my period. I’m currently on day three of my cycle (just in case you were all wondering, I’m sure you were!) so it’s possible that things might ease back down.
  2. Just sheer bad luck – meh, you win some, you lose some. Possible this is just the ‘lose’ part.
  3. I pushed myself too hard today because of the lack of migraine – whilst I’ve napped today, thanks to a lovely friend taking Little Crafter out for a few hours, I’ve also had an hour long appointment, done the washing up, and started the day at 5am. I know that doesn’t sound much written down but with a series of chronic health conditions, every little thing is a big thing.
  4. My migraines are too intense for this treatment to last  Whether I’m just terrified by this thought, or whether it is a genuine possibility, I’m not sure, but the thought keeps whizzing through my head.

It’s scared me, going from a clear head to migraine again. I’m hoping that because it’s still early days, I might not be getting the full effect of the treatment yet; I know the information says the full effect can be seen at about two weeks post injection. But my neck has just clicked. The right side still feels worse, but the left is certainly migraine.

Damn.

Migraine treatment – two days post injection

This will be a short post, because, put – well, shortly – I feel… fine.

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No seriously, I’m not going to start jumping up and down but I’m feeling hopeful that we’re heading in the right direction. The tenderness around my neck has mostly eased off, aside from about a 50p size area around the injection site. The left and right sides of my head (or migraine, I don’t know really) do feel different, but as the right side is still not in scream mode, I can’t really tell for sure whether it is just luck or down to the injections. I also don’t want to jinx myself – I’m not general superstitious, but am I with this? Hell. Yes.

Today I’ve had a fairly average day, in that it had very relaxed and very busy points, so evened out it was probably about equal in each. I felt good this morning, I needed to rest around lunch time. I certainly found it easier to get comfy going to sleep than I have in a while. This afternoon was busy and emotional, and I do have a bit of a stress-induced migraine flare now, but – and it’s a bit but –  it does only appear to be on the right hand side, and this is making it more bearable.

Interestingly my neck hasn’t needed to click at all since the injection, and I moved my head in a motion that would have previously clicked my neck just now, and nothing happened.

Can you see why I’m getting a little bit excited?

Still cautious. Still nervous. Slightly positive.

Regardless of my own personal luck with this treatment though, I do think it is fair to say objectively that the recovery from the injections is minimal. Friday, although I was sore and struggled to sleep was still nothing as bad as a full blown migraine. Yesterday was tender and a bit of wincing. Today is a fairly “nothing has happened” type day. For next time I think I will be prepared to take extra painkillers for the day of the injection and the day after if needed, but would otherwise slot the appointment into a normal day. This in itself is a positive thing; if I can access a treatment which is not only beneficial, but can be minimally invasive to my life as well as my body, that’s thumbs up all around.

Now just to see how the pain is the next few days!

What PTSD does to you

I’ve written several times about PTSD, especially in the post Four Little Words with which I tried to go into as much detail as I could with the objective of my post. One of the things I tried to touch on, but am now going to share more information about, is how PTSD impacts me on a daily basis.

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Every morning, I wake up almost more exhausted than the night before, having had nightmares that kept me awake or paralyzed all night. Because of might nightmares being so awful, I taught myself to do lucid dreaming, in the hope of having some control over what goes on in my mind. Sometimes, this is of use. The other night I had a dream where I was going to be killed and managed to stop that from happening; however this situation then repeated itself in the dream numerous times, along with other dark moments, and when I woke up I was so tired from trying to stop myself being traumatized in my sleep, that being in sleep had been pointless. Whether I am genuinely tired out or it just feels as much, I don’t know – but because it feels as though you have been using a part of your consciousness all night, it feels as if there has been no rest.

The other thing for me about sleeping is that being in bed at all is an achievement. Both of my rapes have taken place in a bed, so that even though I know I’m safe now, getting into bed is something to be proud of. Sometimes just the fact of sitting on the bed is enough to send my head spiraling, and I have to occupy myself with some little thing before trying again, else have my brain exploding everywhere before bedtime has even started. So again, the effort of battling this all night means that by the morning, having woken up several times a day, I am beyond wiped out.

It is hard work, then, just existing at times, and that is not said in a dramatic way, but a factual one; I am constantly running on less energy than I need to process everything that is happening. And that’s before I’ve even interacted with the day ahead.

One of the largest issues in my battle for my recovery is that I have multiple traumas in my past. This means that in the long term there is far more to become desensitized to, and on a daily basis there are far more potential triggers out there, seeing as there is such a variation of damage throughout my life. On an average day I will (having tallied this up, out of interest) come across triggers for five different traumas. Considering that even one moment of interacting with triggers can leave an impact for the whole day, it is easy to see how, by the end of the day, I am wiped out.

The things that trigger PTSD are varied and personal. I have a long detailed list of different triggers, which I add to regularly, the more I become in tune with my condition. I’m a big believer in knowledge being power, but this doesn’t remove the power – by itself – of being triggered. “Triggered” has been taken over by the media as a mocking word, laughing at those who become upset by something, and whilst it’s sad that anyone being upset is mocked, a genuine trigger  is so much more than just becoming a bit emotional. PTSD being triggered is a serious thing, which can have consequences for days afterwards, at times longer, and that is not including any trigger-reactive behaviours which may have taken place.

Existing in the world is an obstacle course around triggers, and finding ways to dodge them is a life long process. Whilst therapies can help, PTSD is a lifelong condition, and it is only aiming to muffle, not mute, we can hope for. In time, hopefully, there will be some things which become less painful to interact with, but again on a day to day basis, this can vary, depending on numerous things. For me, how well I slept, how the previous day was, what nightmares I had, how much physical pain, how I was feeling prior to being triggered, and what the trigger was, are all variation factors as to how I will react when dealing with something.

In person, I can come across as far more composed than I am feeling. Whilst my head is bombarding me with all sorts of DANGER signs, I can have a relatively calm conversation, even if it is only a few seconds to excuse myself from the situation. My psychologist said in our latest session that the trigger diary I had been asked to keep had surprised him to a degree, as it wasn’t obvious how much I was suffering from the surface. When face to face with a trigger, the first thing that happens for anyone is fight or flight. Sometimes now, this is referred to as fight, flight, freeze, or fawn – although this could be argued that “freeze” and “fawn” are both versions of flight. Regardless of this, the way the brain reacts to any trigger can have a more common reactions, or be set at one point always, or range between the two evenly. The brain has learned that certain things are dangerous, and so it needs to react in a way to protect itself, by either fighting the treat, or running away from it. This is not an isolated PTSD thing – it occurs in all human beings, and comes from back when human beings first existed. As our brains were forming thousands of years ago, there were numerous threats around us, that we needed to work out if we should attack or run away from. This instinct we retain to this day, and in PTSD this has come too heightened, so is reacted too easily and frequently.

So, as an example, if I hear a loud sudden noise, I freeze. My heart suddenly pumps faster, I go cold with fear, I sweat, I shake, I feel sick, I want to run away and find somewhere safe. Despite knowing there will be, in all likelihood, a rational explanation for what I heard, my mind starts replaying back all the ‘bad’ loud noises I have ever experienced, and suggesting them as cause for the noise. I look around myself rapidly, almost making myself dizzy with how much I need to find a source of the noise. My vision goes blurry because I’m hyperventilating. It gets worse because I know I NEED to calm down, and that people will soon to staring at me if they’re not already. I want to curl up in a ball and hide from the world, with my hands over my ears so I never hear any noise again, and just stay in safe safe silence forever. The flashbacks have started and they run and run, leaving me frozen and unable to move.

Eventually this calms down, but there is no predicting how long it will take. It sounds exhausting doesn’t it? And it is. And this happens multiple times a day. Sometimes by 9am I’m already so tired I could sleep for a week.

This isn’t a post looking for sympathy; I accept my lot. Don’t get me wrong, there are moments where it infuriates me so much I want to scream IT’S NOT FAIR into the abyss. But if I can educate some and support others, that will make up for what goes on in my brain.

Now, if you’ll excuse me, writing about my triggers has, ironically, triggered me, so I am going to hide from the world with a cup of tea. If there’s someone you think could be helped by this post, please share it with them. I’m happy to answer any questions in the comments! (After my tea.)

Migraine injection treatment – recovery day one, and a more information

Yesterday I posted about an injection in my neck as a method of treatment for my chronic migraine. On the whole it was probably more emotive than factual, but my aim was to put across a patient’s perspective, as well as recording my own experience. There is also the fact I was a little bit out of it following the injection, with pain and fatigue – a combination, I expect, of understandable side effects and the impact of the stress on my other conditions – so I wouldn’t have been able to write a fully informative post if I had wanted to.

As I mentioned in my other post, the doctor I saw was wonderful, and explained the treatment in sufficient detail, that I would have understood what was going on if I hadn’t have researched in advance. This in itself was really wonderful, but I was also lucky that I have been able to read up on the injections before it happening. I’m now going to discuss the injections as an entity a bit more, but as on my previous post, please remember I am not a medical professional, I am a patient, and this is from the perspective as someone having had the treatment rather than giving it.

What is this treatment, how does it work, and what is the objective with these injections?

Travelling up your neck from your spine, and into the back of your head, are a series of nerves know as the occipital nerves. There are two types of these nerves, the lesser occipital nerve, and the greater optical nerve. It’s the greater occipital nerve that the treatment deals with. This nerve, and the area of the brain, are important for vision, spatial awareness, word recognition (processed, read or spoken) and colour recognition, along with other things. All of these, as you will know if you deal with migraines, are impacted during a migraine attack. The point on the back of the neck, just below the skull, where these nerves are located are often incredibly tender for those who suffer with regular migraines or cluster headaches.

The sub-occipital region that is so sensitive is where the greater occipital nerve block is aimed. The doctor locates the GON as I described yesterday, simply by feeling the painful area on the back of the skull at the top of the spine, and identifies which side is more sore between the two. The patient is told to relax their shoulders and put their chin towards their chest (which may be very counter intuitive for many migraine sufferers, having previously been told to mind their posture), and the area is cleaned with a swab. A very fine needle is inserted into the area with the most pain, and a local anesthetic in combination with a type pf steroid is injected. It takes only a minute, and the relaxing after takes far longer than the treatment itself. As I said yesterday, it is more uncomfortable and ‘weird’ than painful, and will hopefully be well worth the weird moment. The patient may be in some discomfort for a few days around the injected area, and should rest their neck as much as they can on the day they receive the treatment; other than that, it is minimally invasive both to the patient and to their life. It is recommended on the first time that the patient has someone to drive them to and from (or accompany them if going via public transport) the location, just in case they feel unwell.

So after that science babble, how are you feeling day one after the injections?

I’m doing okay. I’m not feeling great, and I didn’t sleep well. Whether it’s chance or not I don’t know, but my migraine is right sided today (I was injected on the left), and there is merely a dull throbbing on the left. My neck is very sore, and I get a sharp almost tugging feeling if I turn it too far in either side. Mentally I’m feeling both hopeful of it working and scared it won’t – I really need it to work. As in, will lose my mind if it doesn’t. As in, will lose the will to live if something doesn’t give me back quality of life. So I will gladly take some neck pain and discomfort if it means in a few days time I can live properly again.

In short, if it has worked, I will mark three months on the calendar NOW to count down. And if it hasn’t – well, I really haven’t lost anything.

Neck injections – migraine treatment

Today I had a neurological appointment. I was truly desperate for this to go well, and I had sent an email ahead, having not met the neurologist before, to explain my situation; constant migraine, with a lifetime history of migraines, and no real impact from medications. The fact a previous doctor had suggested a nerve block steroid injection to help. The fact that I was getting quite dangerously depressed living – or rather not – like this. I had no idea what was going to happen today and spent my time in the waiting room frantically writing notes in case I needed to persuade someone of how bad things were.

I was called in about 40 minutes late, and they were very apologetic; there has been an issue with notes and someone else had been noted as arrived rather than me. Still, it wasn’t an issue as long as I was being seen to be honest. I was taken into what I was told was the recovery area to wait, which made me hopeful, but it wasn’t until I started being briefed on needing to wait for fifteen minutes after I braved risking the possible negative; was the doctor planning on doing the injections today? I was told yes, and given a glass of water, and they were extremely considerate, turning the light off, after finding out I was there for migraines. Or rather confirming; I think my sexy yellow glasses gave the first clue. 


Relief swept through me, closely followed by nerves. I hadn’t been prepared for this to be done today, and maybe I am a pessimist, but I completely expected to be ignored in my email. The nurse chatted with me until the doctor arrived, and I immediately e wanted to hug her, for doing this. 

I was fully briefed on what was happening; the time frame for PAIN after, when any improvement might start, the regularity of repeated if it did help, the possibility of doing it on both sides rather than one of needed, exactly how the procedure aims to work. I felt completely in safe hands. I was being listened to and believed. She had evidently been very thorough with my notes, reading back to the first mention of this treatment, and again I found that helpful; I was too nervous to start from the beginning. 

Because it was the first time I was having the treatment, it was being done on one side. When she asked which side I felt was worse, I initially said my right. However, as she was pressing The back on my head to check where was more sensitive, a particular spot on the left that made me yelp. Interestingly she said she could feel the misbehaving nerve in that spot – so we went for the left. Although she didn’t say as much, I’m really hoping the fact she felt the nerve on that side makes it more likely to have worked.

The actual treatment was painful but not unbearable. It felt odd, feeling it being moved into place by hand once injected and there was one moment that made me feel a bit worse for wear, but other than that it was just weird, and over in a minute. I was a bit clamy after, from stress more than anything I think, so I spent the rest time after leaning back. The lovely doctor came back about fifteen minutes after to check on me, and to say we’d do some bloods before I left as she wanted to check a few things, my last relevant results having been from January. She advised I take a supplement if I wasn’t already for some low levels, shook my hand, and said she’d see me in three months; she had booked me in to the clinic to repeat the injections. 

Overall today was one of the most positive medical appointments I’ve had, and now I am just keeping everything crossed it works. I won’t lie, I’m feeling very rough this evening and have followed her advice about taking it easy in a lot of detail, but goodness knows it will be worth it if it helps. Keep some positivity flowing my way please readers!

This is my experience of an appointment, designed to share and support. I am not a medical professional; please keep this in mind if you use this post as a reference point. 

Cardigan Progress – Body Half Done!

I’m enjoying this so much. To a degree I’m kicking myself for not trying it earlier, and for doubting my crafting abilities. For doubting myself, I guess. 

Crafting clothing has always been something I dreamed of being able to do, and something I’ve admired for a long time, so finding myself writing a pattern, and having produced an item which looks like a waistcoat so far, is something I’m very proud of. I’m enjoying  both the pattern and the cardigan as much as each other, and am already thinking ahead to the next time, and the one after that. 

At the moment my plan is to put the pattern on here in stages for free, and to publish on Ravelry for a small fee as one article. So keep an eye out! 

A-a-a-a Stayling Aliveeeeee…

Have you ever wondered if the amount of pain you are in can kill you? Because goodness knows I have. Some days I’m close to vomiting and passing out from pain, and it crosses my mind: could this kill me? 

Whilst being in agony full time may not be lethal on its own, it does become a battle to function as the pain erodes your sense of self, to make more space for PAIN (capital letters essential), and this in turn can lead to depression, from the weight of the world dragging you down. Pain, especially chronic pain, is a nasty hideous creature who can only be held at bay for periods of time at a turn, rather than conquered and defeated. 

And sometimes making the choice to stay alive when everything in you knows you will be in pain forever more is the bravest thing to do. 

I’m no teacher. I’m not wise, not an I even clever. But I have my life and the experiences that has given me to show me certain things, and I am always in awe of people who are in pain constantly and still put all they have into their days. That doesn’t change whether they run a marathon or can’t get out of bed; if you have given all you have, despite everything holding you back, you are my hero. 

Deeper share of blue

So am possibly proving my age bracket but this song will not get out of my head.

I like to break the stereotypically enforced rules of fashion where I can; purple lipstick, coloured mascara, and mail varnish in various colours. I’m a big fan of bright red make up, but have found myself trying more and more “not red or pink” items as I’ve aged. Sounds like a ridiculous thing when it is written down but fighting against all those little rules of being a woman is sometimes all I can achieve. 

I’m trying to keep light, but my mood is blue. My PTSD is reeling. My pain is spiralling. I’m terrified of handling the summer holidays being as ill  as I am. This time last year I was a bit less ill – I won’t say “better” because that’s not really accurate to my health – than I am now, and so managed to tick by, just about. Today is the second day of our holidays and I am already broken from lack of naps. And just knowing that makes me feel worse.

There are times where being severely ill is harder than others, and moments where I can’t find a way to pretend, to myself or others, that I am not as well as I want to be are the hardest. It makes me vulnerable, at risk and ashamed. It shouldn’t, not any more, but I will be honest, even if I’m not proud of what is shown via my honesty. I spend time and energy telling others they have nothing to be ashamed of, being ill, and yet here I am with my feelings, not matching what I advocate. I’d love to, always, in an ideal world, but life isn’t ideal and I am only human.

However.

The cardigan is back on the hook as the yarn to finish it arrived, and goodness knows I want it to be wearable by… Yesterday. 

I have an important hospital appointment this Friday which I’m hoping will be as positive as I need it to be.

AND Little Crafter declared that today would be a spa day, and you know what? It’s the best damn spa day and partner I could have wished for.