The Daith Piercing: has it worked?

My conclusion regarding the effectiveness of the daith piercing is long over due, it’s been pierced for nearly 2 months. During that time, I haven’t encountered any major issues, in the last week it has felt a bit sore but nothing excruciating, more of a bruised sensation. I bought a bottle of TCP to clean it and it’s been fine since.

Since we’re on the subject of cleaning, I’ll state now that it has been a truly awful piercing to clean. You cannot see where you’re putting the cotton bud, which resulted in me getting annoyed with myself and having someone else clean it for the first week. I was told to use cooled kettle water and salt to clean it, I opted to use Epsom Salts rather than normal salt. I had to use the salt water for two weeks and cooled water alone for a further two weeks.

Healing wise, it’s doing well, a week after it being pierced, I totally forgot it was there which resulted in “oh shit, I need to clean my ear” moments. The piercer told me I wouldn’t be able to sleep on it for a while, but 2 nights into it being pierced, I was sleeping on it fine. It caused no pain or discomfort and in the first week, it bled once but it hasn’t since. Cleaning aside, it has been one of the easiest and pain-free piercings I’ve had. And for those wondering, you can still use in-ear headphones with the piercing.

But, has it worked? I’m pulling an ‘erm’ face whilst writing this bit and as you read on you’ll see why. In the first 2-3 weeks, I still had headaches but oddly enough, only on the right side and nothing on the left side (it’s the left side that is pierced). However, I then suffered a bout of insomnia which snowballed me into a long flare. The flare was so prolonged from my usual flares that I asked the question of “am I even in a flare or has my lupus just got worse? Can that even happen?”. The headaches started back up on the left side during the insomnia period, but I gave the piercing a pass because the headaches were the result of exhaustion. However, after being prescribed sleeping tablets and sleeping a decent amount, the headaches didn’t disappear and I’m still suffering some degree of a headache daily.

BUT, and this is why I’m sat on the fence, since getting the piercing, I haven’t had one migraine. I usually have at least 1-2 a month that can last days but it’s been nearly 2 months without one. Sure, I’ve had bad headaches but nothing that requires me to stay horizontal for days or makes me feel like I’m looking directly at the sun when there’s a light on. But, this could just be a lovely coincidence because if it’s stopping migraines, why isn’t it stopping headaches?

My conclusion is that it might be affective if you suffer from migraines alone. But, let’s be real, I have several auto-immune diseases, a piercing was a long shot if medications weren’t working. If you were debating the piercing, I’d still try it because what doesn’t work for me, might work for you.

For the sake of £20 I gave it a go. I have a nice piercing though, so it isn’t a loss or waste of time…every cloud has it’s silver lining and all that!

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No sleep for a week…

I think it’s still a crazy concept to some people that someone with crippling fatigue does struggle (all to often, might I add) with insomnia. Sleep issues are a running issue with Lupus sufferers, we either sleep incomprehensible hours or not at all. Last week, I was on the not at all scale – I have never experienced insomnia that bad before. Insomnia is highly irritating for anyone but, for someone with a chronic illness and chronic fatigue, insomnia doesn’t half do some damage.

There’s no psychological issue for my insomnia; I’m not stressed, upset or overthinking. Sometimes, there is a physical reason and that of course is pain. Insomnia by pain is something I can usually help – strong pain killers will usually numb the pain enough to be able to sleep. Other times, I just cannot sleep which is how last week started out but towards the end of the week, it was a combination of both pain and just not being able to fall asleep.

It takes just one night of inadequate or no sleep to cause me to flare. My joints became painful and by the weekend, I was walking around on a swollen knee and applying Tiger Balm on my joints so now I have stained PJs and owe my dad some Tiger Balm. I had exhaustion induced headaches, my whole body ached like I’d just ran the London Marathon, my appetite vanished into thin air and was replaced by nausea. My usually chilled out personality was replaced by a short tempered monster, which I think is fairly acceptable given the circumstances around it. By Friday my rule of ‘don’t cry over Lupus or what it does or causes’ went out the window – I sat and cried for sleep from Friday to Sunday. I probably looked like a crazy woman curled in a ball on the sofa at 4am crying and saying “please just let me sleep” to the air.

I tried everything; reading, warm drinks, not looking at my phone or the time, counting sheep, counting back from 100, cleaning (which was ended quickly by feeling like I was going to faint), over the counter sleeping tablets (usually effective on me), I tried codeine and tramadol and for a second of desperation I even thought of mixing the two opiates to knock myself out (I didn’t try this in the end in case I actually went into an eternal sleep). Towards the end of the week and this isn’t a joke, but I was debating asking my brother to just punch me so hard it knocks me out. I even found myself saying “it’s a good job they took the bridges down because I would of jumped off the f*cker by now” and that’s what pure sleep deprivation does to you.

By some miracle, I lasted a week…7 whole bloody days…that’s 168 hours on no more than 10 hours sleep. I spent most nights looking at the living room wall, tracing the pattern with my stinging eyes, wishing my dog was downstairs to cuddle, watching the seconds tick by, crying and cursing myself in anger. 3am on Sunday, well the small hours of Monday, I decided I couldn’t take anymore and was going to see the doctor. In a mad rush, I was looking for money because I had none on me for bus fare and ironing clothes, I’m still surprised I didn’t run the iron over my fingers in my exhausted state. Once the receptionists opened the doors and everyone was clambering in to get on the doctors list first (it’s a walk in system) a very kind lady stopped and looked at me, probably taking pity that I genuinely looked beyond exhausted and pointed at the door and said “you go first”, so thanks to her, I was lucky to be 3rd on the list.

“How can I help you?” he asked me and all I could say was “I haven’t slept for a week” he was probably looking at me thinking ‘no shit’. I explained how it was making me flare badly and told him “I think I’m losing my mind over it”. He gave me sleep exercises for the future and prescribed me Zopiclone and he said he can guarantee tonight I’d sleep soundly. As I was gathering my things and saying thank you he showed me a lovely little injection, so I was also stabbed with this years flu jab as well…two birds with one stone and all that.

He was right, I did sleep solidly. I took the tablet and before I knew it, I was waking up this morning. I didn’t even use the pillows and the duvet was only on my legs but yet, it was the best night sleep I’ve ever had. The flare is on-going but it has got a little bit better with sleeping last night, it will take me a good few days to recover from it. The Zopiclone left me quite tired today, especially this morning but I expected that because I used to administer it at work and the patients would sleep on and off during the day that followed the pill being taken. I didn’t mind though, it was an excuse to get more sleep.

I never want to experience insomnia that bad again, and the next person that tells me their suffering badly with insomnia will get the biggest sympathetic hug from me. Sleep is not for the weak, it is a wonderful thing that I love and missed so much. Zopiclone, you bloody beauty, thank you for knocking me out so my brother didn’t have too.

A final update on Azathioprine

It’s nearly been a year since I was prescribed this medication so I thought it was time to do a final update and for all my fellow sufferers, let you know my thoughts on this immune suppressant medication.

Immune suppressants are a serious thing, more serious than I originally thought. I first realised this when the packaging came with a warning label, reading ‘cyto toxic‘, I had no idea what a cyto toxic drug was which prompted me to research it. A cyto toxic medication means the drug contains chemicals that are toxic to certain cells. The next thing which made me realise that this isn’t a simple medication was the amount of blood tests you have to have. You even have to have your blood tested before you start the medication, the test is called TPMT – I later figured out this was to show how well your liver would tolerate and filter the drug. Mine was slightly low so my dose of Azathioprine will not go beyond 100mg.

At first, the blood tests were extremely tedious, they were initially every week for 6 weeks. Then they moved to fortnightly for 6 weeks and then to monthly for 6 months. I have now reached the end of the tunnel and my blood tests are once every 3 months, if I remain stable on the medication they may be moved to once every 6 months. I didn’t mind the monthly blood tests and luckily they fell on the same day my prescriptions were ready to be picked up. I believe the blood tests are for: full blood count, liver function test (as this medication can cause liver problems) and urea and electrolytes.

My consultant gave me a two-sided information sheet on Azathioprine when I firstly commenced the treatment. One side is more or less for my GP, a lot of medical jargon that I can’t understand but it did tell me how much blood work was needed and when. It was great to have a clear idea of how long each stage of the blood tests could potentially last. I was on my monthly stage for longer than expected, it was nearing 9 months, there wasn’t an issue or I would have been alerted – I just think they forgot to move me up to the 3 monthly stage until I subtlety asked “do you know when I’ll move to 3 monthly tests?”.  The sheet also educated me on vaccines and that live vaccines are not recommended on this medication – a reason unbeknown to me, but that I also needed the flu vaccination along with the pneumococcal (pneumonia) vaccination. I was also told to try and avoid people with mild ailments such as coughs/colds/sickness bugs etc, because my immune system would be lower than normal and I would pick the bugs up easily and struggle to fight them off.

Did I find this a miracle medication? Initially this medication helped with one symptom that I’m plagued by: headaches. However, this didn’t last long and I started suffering daily headaches again. I still suffer pain in my joints daily some days better than others but at some point in the day whether it lasts 5 minutes or 5 hours, I will have joint pain. I still suffer aches usually my back, arms, shoulders and legs – I suffer achiness more so in the mornings and evenings. I still suffer greatly with fatigue and it’s made worse by doing things or going places but I cannot fault the medication for not improving fatigue as I don’t believe any medication will help.

It doesn’t sound like Azathioprine has helped a great deal, but when I think back to when I was solely on Hydroxychloroquine, I am better and this medication has slightly helped. I can do just that little bit more on ‘good days’, however if I overstep the mark on a so called good day, I still pay for it on the days that follow.

Considering I was told I would pick up bugs and virus’ easily I have suffered from very few one being a cough at the start of the year that lingered for months. And more recently, a virus that spiralled me into a flare I couldn’t control and needed medical intervention. I have suffered very minor bugs but they seemed to be 24-hour bugs that I managed to fight off. I made a conscious effort to avoid friends and family with bugs, my friends have been greatly understanding of this and they cancel any plans if they or their children come down with a cold/bug. Of course, it’s harder to avoid with immediate family, especially when we are in the same house but they also make an effort to not spread their germs, they do this by not getting too close to me or touching me. I also keep a bottle of hand sanitizer in my handbag for whilst I’m out and I also have bottles in the house.

Have I suffered any side affects? Oddly enough, I have suffered none. I say ‘oddly’ because when I started Hydroxychloroquine (very tame in comparison to Azathioprine) I suffered horrendously with nausea and could barley eat. However, I have noticed a difference in my teeth, yes I just said my teeth…go with me on this one. I’m on a few online support groups for Lupus and I was alerted that immune-suppressants can cause dental problems. I asked my dentist this and she confirmed that they can indeed cause many issues. I have noticed that I can no longer use toothpaste that has a whitening agent in because it causes horrific sensitivity. And since I’ve mentioned I suffer many auto-immune diseases and take immune-suppressants, my dentist has started to put a fluoride gel on my teeth and gums at every visit, the first time she used it she told me “this lowers your risk of tooth decay”. I’ve also been told numerous times to use Sensodyne toothpaste and I did but that toothpaste is truly vile. It’s safe to say that I no longer put off going to the dentist and when I get my reminder letter, I’m straight on the phone booking in.

Would I change my treatment plan? At the moment, I would be very reluctant to change my treatment plan. It’s not a little change, it’s a whole new medication that I’d have to look into, potential awful side affects, possibly going through all those blood tests again and not to mention…learning how to spell it, seriously why are they so difficult to spell?! I honestly believe if I changed medication, a year later I would be writing about how I feel exactly the same. At the end of the day, the medication is there to control Lupus and I think Azathioprine is controlling mine, despite still suffering flare up, I have suffered no tissue or organ damage *touch wood this continues*. There is no medication that can eradicate the symptoms of Lupus. I once told my consultant “I think this is as good as it’s going to get” he didn’t verbally reply but gave me a nod as if to confirm what I just said was true. I will always feel Lupus because it demands to be felt. If my consultant was to propose a change in medication because he thought it would be best for me, then I would. But, for now I think I’ll stick to Azathioprine because like I said, I think this is as good as it gets…unless my teeth start falling out, then I’ll change my meds faster than a speeding bullet.

What is Raynaud’s Phenomenon?

I want to start writing blog posts explaining what my secondary illnesses are. This task might take me a while to get through – because I want to ensure they are thorough and easy for you to understand. 

Raynauds Phenomenon, or Raynauds Syndrome or simply just Raynauds. This is the illness that makes me cold, it’s the illness that has given me a love of blankets, fluffy socks and the ability to sniff out any nearby heat sources. Although it’s a running joke that I’m rarely seen without my beloved blanket it’s actually a serious condition and extremely unpleasant. 

There is two types of Raynauds: primary (the most common) and secondary. Oddly enough in Raynauds, having the secondary form is the worse of the two. For me, Raynauds is secondary meaning it was caused by Lupus. Despite it being secondary and having 3 other secondary illnesses – Raynauds is right behind Lupus in the terms of torturing me. 

I was diagnosed with Raynauds in November of 2015 however my mother believes this is a condition I’ve had since a child – of course it was much milder then as it is now. If I were to touch you, I’d make you jump out of your skin – I really am that cold to touch. 

Raynauds Phenomenon is poor circulation to various parts of the body, most commonly the hands and feet. The symptoms are brought on by cold temperatures, although being outside will instantly trigger my Raynauds so will drinks with ice and walking down the chilled and frozen sections of a supermarket. Stress and anxiety are other known triggers of symptoms. 

A Raynauds attack for me typically makes my hands and feet look like they belong to a corpse. It goes in 3 stages:

  • Red with pink spots
  • Purple
  • White fingers and toes 

However, Raynauds doesn’t just affect my hands and feet, it can affect my whole body. For example, if I have a drink with ice I will shiver uncontrollably. This sort of ‘attack’ can also come from a slight breeze, simply from walking down a chilled/frozen section of a supermarket or from being outdoors for a prolonged period of time. It can last from 20 minutes to over an hour. Raynauds also affects my nose, yes you read that correctly, my nose gets very cold too! 

The ‘warming up’ process is extremely painful and on some occasions has brought tears to my eyes. The only way I can think to describe the pain is: when you played out in the snow for hours as a child and then got straight into a hot bath. It is also mixed with pins and needles and my fingers slightly swell. I typically scrunch my hands into a ball because just moving my fingers during this process is complete hell. For my feet, I just sit down and don’t move until I can feel them again. It’s during this time my hands go a bright red, and I mean bright, it’s like someone opened the flood…or should I say blood gates and every blood cell I have is rushing to get to my hands and feet. 

Raynauds affects many aspects of my life, I have two pairs on gloves in my handbag. On t-shirt weather for you, I will still be wearing my very much loved leather jacket and a bulky scarf. I struggle to distinguish water temperature, take batheing for example: I happily sit in luke warm water because to me it feels like a normal hot bath. Showers are the same, I turn the water to a low heat. If someone has filled the sink up for washing up I immediately add cold because the water just feels scolding to me. I sleep with 3 blankets and have a fleece bed sheet. 

Raynauds is a common condition and affects 20% of the worldwide population. It is more common in women than men. Although complications are rare, they can happen. They are: 

  • Ulcers 
  • Scarring
  • Gangrene (tissue death)
  • Scleroderma (hardening of the skin)

There is treatment for Raynauds, most of the time you can control it yourself by avoiding the things that trigger you and wrapping up warm. If you smoke, you are advised to stop as smoking can affect circulation – I didn’t find any change in my Raynauds from stopping smoking but I can guarantee if I carried on, it would have eventually progressed. If you are unable to control it yourself there is a medication called Nifedipine, which is a medication that encourages your blood vessels to widen. Although rare, surgery is sometimes needed if you don’t respond to treatment. The surgery is to repair or unblock blood vessels, this is to protect the certain body part affected becoming more damaged.