When your at your lowest , the only direction to go is Up!

Once again you find me battling with the beast on a daily basis, yes the clusters are back and with vengeance. After having my last nerve block at the start of the year my clusters have been non stop daily and no time off. Every morning I get woken between 2 & 4 am which I call "cluster o'clock" and the pain level has just been brutal this year. I don't care how many years someone suffers with this condition you will never get used to the pain or ever find a way of dealing with it other than through medication or treatment. I have tried other ways of trying to manage the pain from acupuncture to meditation and the only thing I find that reduces the amount of attacks I get in the day is when I am out fishing and the body relaxed. Unfortunately due to nerve damage In the neck and spine I have had to take time out but am about to restart my journey and get back on the bank so I am hoping it will help to reduce the daily attacks. 

Well I started the summer great with a bit if a cancer scare due to a testicle suddenly enlarging and doctors confused so rushed me for urgent scans. Turn out a bit of good news bad news scenario , the good being it's not cancer . The bad is they found a cyst at the end of my tube and the tube has enlarged along with the testicle so could be possibly causing a blockage . This will mean another trip to hospital and an operation to remove the cyst I think as the testicle is still growing, slowly, but growing. My luck when it comes to my health is just awful and when ever I think I am finally winning I get knocked back down. Well one things is for sure I can't get any lower at the moment so there is only one way to go and that's up. Let's hope I can jump on the ladder and start climbing as it's really starting to do my head in and I just need a break. The body feels so weak lately after having to deal with so many attacks. I know they say clusters can't kill you but I am sure the side effects and after effect of a cluster can if you don't look after yourself. I have never felt so beaten up in my life where the entire body is suffering. I am hoping this will soon calm again once I have a grip of the attacks and get them under control again, if they ever were. 

Not much else to report at the moment as I am still waiting in treatment and scans for my neck and spine and due to COVID I can't see it happening any time soon. All we can do it grit our teeth, grin and bare it. The neck is worst then ever before and effecting my entire upper body and the spine seems to come and go making it difficult to walk some days. The pain level is the worst thing as being nerve pain it's always sharp and strong making everything an effort. Simply walking to a friend's who lives 5 minuets away is like doing a marathon. The pain level from the spine is shocking , it's so intense you find it hard to catch your breath . Thank God it's not all the time and only flares up now and again. I am sure this, what ever it is, is what causes the weakness when I walk and also the pain when I try and push myself to far. Let's hope it's not too much longer to wait for the scans. 

Two Steps Forward , One, Step Back

There are times when i actually think i am getting somewhere with this illness and there are times where i just want to scream and give up. It takes so much strength to keep pulling yourself out of the depression that comes along with chronic cluster headaches and the constant battles with the pain on a daily basis. Being chronic and having daily attacks feels like you are being constantly tortured and you have no control over the torture and when it happens.

I have had such bad luck when it comes to preventative medications it really is starting to become depressing as you dont know what else you can try. My Neurologist is brilliant and is willing to try anything i like. We have been doing GONB (nerve blocks) every 3 month as it seems to give me some reliefe from the daily torture but it causes issues itself with the damage i have in the left of the neck. I am still waiting for scans and referals so we can find out what is going on in the neck as it causes so many issues now its crazy. Effecting my arms , my back, my lower spine, my legs and my chest, the problem in the neck is become such an issue i struggle with it daily and its effecting everything I do. 

I have woken up several time paralysed down the left side of my body , now when i say paralysed i mean it , not numb, not dead but actually could not tell the brain to move my arm or leg no matter how hard i concentrated. Then only to have it suddenly come back to life after 10-20 minuets later with a feeling like somone is pouring cold water down my left side of my body. Its the strangest thing ever but its really starting to worry my as i fear one day i will wake up like it and its not going to come back to life , I could not live like that , not with everything else i have going on with my health. 

I have such bad luck when it comes to my health its crazy and becoming  an issue. Once again, as soon as i thought I was wining, something else comes along to throw a spanner in the works. Now another infection in my groin making walking very painful as it feels as though someone has kicked me clean in my family jewels. Another course of antibiotics making me feel rough and weak all the time. I am praying this infection goes at the end of the 2 week course as if it doesn't then the problem could be a lot worst than just an infection and something I really don't want to consider. 

I am slowly trying to get myself back out on the bank fishing again but having issues moving, walking and lifting things is making life hard and miserable. I used my fishing as a way to control my mental health and deal with depression but not having this outlet for the last 3 years has really started to take its toll and effect me badly. I try and keep busy using social media and friends and members of the fishing club send In thier catch reports to me so I can put them up on the social media feed and this keeps me focused on fishing but it's killing me not being able to get out myself. 

Well this year I decided no matter how much pain I am in or how bad I feel I will make the effort to get back out on the bank. I don't care if I have to employ someone to do all the hard work, lifting and setting up for me to save me struggling and suffering in pain. The way I see it I could be sat at home in agony or I could be out on the bank in agony but at least I would be out in the fresh air doing something I love rather than sat at home dwelling on my situation feeling bad and sorry for my self. Its only US that can help ourselves when we find ourselves in such a situation. I have learnt you cant really rely on anyone other than yourself when things turn bad and when you do try and rely on people and they let you down it hurts so it's best to get on with things and try and deal with each issue one by one as it happens.

I am still waiting for the NHS to catch up with thier services after the covid out breaks and lockdown as there are big waiting lists for all treatments. I am waiting for scans on my neck, scans on my back and lower spine and also been referred for trauma counselling regarding my mental health but whilst I am waiting things are just getting worst and worst instead of having the right treatment to get better. It's got to a point where I don't know what do do as everything I try just makes things worst. Let's hope they get things sorted soon and I don't have to wait too much longer. 

Cluster Headache Poster

 

One Hell of a Start to a New Year

 Once again I wish that I could report better news regarding the covid 19 virus but unfortunately the world is still in one hell of a mess with lockdowns and restrictions and countries struggling to get infections under control. With all this going on its very difficult to get help with medical issues and problems and any non-life threatening treatment is out on the back burner due to staff shortages and high infections stretching the NHS beyond breaking point. The whole situation is really one big mess.

I myself have been through hell on earth with regards to my health. Not only did the clusters return in force due to having the vaccinations but I also ended up catching covid again which has left fatigue issues like you wouldn't believe. On top of this my neck and spine have become so painful its difficult moving around. I did get a nerve block down when i last saw my Neurologist which helped for around 3 -4 weeks but then everything returned worst than before. On top of all this I have ended up with several infections, the last of which has really knocked me for 6 and am still suffering with it now, A huge throat infection and tonsil infection that ended up with me spewing up blood every hour from 3 am till midnight and being rushed into hospital.

After a day on IV drips and medication to stop the sickness they allowed me to go home with antibiotics and other meds to continue fighting the virus at home and I can tell you this is the worst thing I have ever experienced. Sore mouth , difficulty speaking and constant feeling of weakness really gets to you after a couple of days. I am really hoping the medications gets rid of it soon but still early days . I do feel a little better than I did at the start but not much. I have tried to get on with things but just cant as I am constantly sleepy and drained. 

One things for sure, I have the worst luck when I comes to my health and if one things isn't causing me a problem I would think I was broken. Its become the norm to be in pain constantly or having to battle symptoms of some sort. I cant actually remember when it was the last time I experienced a day with now pain at all. I am praying that things starts to calm down with this crazy virus and treatments within the NHS start to pic up again soon as I am still waiting on the spinal clinic and spinal specialist plus 2 urgent MRI scans on my spine and neck to find out wats going on and why some days I wake up paralyzed down my left side of my body only to have feeling return several hours later.

There's not really much more to report on at the moment and I will write my next update as soon as I get results from these scans to see what's going on and what if anything can be done to rectify the problem. Hopefully i can get this infection shifted soon and not end up back in hospital as that's the last place anyone wants to be during a pandemic. What a way to start the Year! Happy New Years Guys ......