Another year of hell on earth , pain and clusters.

Well I thought it was about time I updated my personal health blog and what's been going on withe regards to the clusters and the damaged nerve.  It's been a while since my last post and nothing seems to be getting better in fact it always seems like I take two steps forward and one step back all the time and I struggle getting to where I want my health to be. 

Once again I have woken up with the entire left side if my body paralysed and I don't mean dead and still asleep and not quite woken yet like sleep apnoea. I am talking full on hopping about the flat in panic for over 20 minuets of the left side of the body being completely dead. I could not move my arms my legs , fingers or toes for the entire time no matter how hard I tried to concentrate. It is one of the scariest things I have ever had to endure and when it does come back to life again it's a really strange feeling like someone has walked up to you and thrown water over the left side of you and you can feel it running down the body and life returns to the limbs. 

Again I had sharp pain in the base of my neck and the bottom of my spine when everything started to work again. When I examed myself, during the stroke like episode, I noticed I lost feeling half way down my neck and the numbness on the chest was half away across the left brest. Tha same was with the feeling down the side and groin. I have to say I never want to stay paralysed like that it's a horrible thing to experience and lifting your limb when it's dead weight is a shock. You don't realise how heavy a dead limb is.

I have been having big problems with my neck of late and the pain I keep getting in the neck is even over powering the high level of medication I am on and is really worrying me. The base of my spine has now joined in full time with no breaks from the pain just level drops and then gets strong again when I move around and try and do things. I am really starting to worry as to what's on earth is going on I have never felt pains like these before and they are really sharp stinging type pain. If it's all down to a damaged nerve as the spinal specialists did once suggest then it's starting to concern me as to what nerve it is I have damaged as when it's bad it's paralysing me ..... That's not a good thing to be happening as one day I could wake up and it may not come back. I really do fear that day! 

With the high level of medication I am on just to be able to move about and try and get on with things are making me live life in a constant haze. I don't feel like I am completely there and each day seems like a dream. It's a horrible feeling made worse with lack of sleep due to the neck pain constantly waking me up. 

I am determined to get back out fishing again this year as it's been 3 years since I had a proper fishing session on the bank. The medication will allow me to do this but I will have to have someone with me at all times just in case I have a cluster and also to be on the safe side with the level of medication I am on. My balance isn't the best on this medication so slopy banks may prove a challange. Thankfully my step father has agreed to come with me in sessions to give me a hand with all the gear and help when on the bank fishing and to keep and eye on me. 

As far as treatment goes there isn't much else they can try for my clusters unless it gets completely out of control and that could mean a brain operation and I don't fancy that at all. Dr. Pickersgill , my neurologist is keeping an eye on me twice a year and the GP keeps check on my medication every 6 weeks so I am slowly settling into a new routine. I have had the MRI on my neck so have to book my follow up appointment in a couple of weeks so will hopefully get some answers as to what's going on with the neck and spine. I have started counselling to help me deal with the constant pain and depression that comes with the clusters and teaching me tricks to help me deal with things much better so there is some light at the end of a long dark tunnel it's just going to be a long painful journey. 

For now all I can do is hang on in there and hope for the best taking each day as it comes. It's really difficult trying to keep a positive look on things all the time and not giving into the depression. I feel cut off from the world more now than ever before so there's a battle going in in my head at the moment , one I really do hope I win. 

 

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 ......

The worst month of my life, heaven has a new angel.

This is probably one of the hardest blog updates I have ever had to write. As of Monday the 4th of October my mother passed away whilst still in hospital during a viral infection that resulted in pneumonia and her passing in her sleep. It has rocked my world and a vale of darkness has descended over me. No matter how hard I try and deal with it it just over powers my emotions and cripples me.

My mother was such a strong inspiration to me, not only did she care for me, no matter what I did wrong and she was always the one to point me in the right direction again, but also cared for my health. She battled and beat cancer, she even survived double kidney failure and even beat of the covid infection the first time around. 

Unfortunately the viral infection had caused so much damage to the body that it was just slowly giving up and after her leg breaking from just standing up, bones had become brittle from the Infrction, it seemed like it was just one thing to much for her and she eventually lost the battle.

My heart has never felt so much pain in my entire life, I didn't feel this bad when my father passed and I used to think I was closer to my dad than my mother but boy was I so wrong. Its really hit me hard and I am struggling daily, battling back the tears and sadness non stop, all day long. 

It was my mother who started me in my fishing journey all those years ago when I was struggling with my mental health and clusters had began. She would make sure we would go out and fish together at the beginning until she became to weak to come on the trips. It helped me to deal with my demons and focus on myself and how to manage my condition. I am going to be lost with out her positive input and constant pushing me to be a better person.

You don't realise how presious someone is to you until they are gone. It's going to be a long hard road to get over this if I ever will, all I know is the pain is strong and will be here for some time to come. I know as each day passes you learn to live with it and accept it but try telling yourself that when you are hurting.

I get mad reading all the BS on social media about the covid virus and people not believing its real or that somehow gouverments are creating the issue but all I can really see if 100's of thousands of idiots. The virus is real, I've witnessed it, had it and have now lost the person most presious to me from the consequences of the viral infection. Anyone still thinking it's a joke, a conspiracy or a way of control really need to bang thier heads against a brick wall really hard. If that fails get a mate to hit them over the head with a sledgehammer as they don't have brains to damage anyway. Enough is enough. Get a grip on reality the lot of you and let the ones who have lost loved ones morn in peace instead of having your BS shoved down thier throats on a daily basis.

Well I've said what I wanted, it doesn't make any difference to the amount of heart break I am feeling right now, all I know is heaven has a very special angel joining the ranks and I pray I make her proud. 

Miss you and love you forever mum! 

Hope blown away as clusters return

Once again I am left waiting for things to change before writing my blog. I hoped that after a couple of years dealing with this pandemic we would actually have gotten to grips with it and finally got things back to normal. The truth is we are far from it. People are fed up with hearing about illness and issues relating to covid and even I am getting fed up with it all.

I didn't really want to write a blog complaining about the hard times we are all going through and the difficulties we are all facing getting treatment for on going issues other than covid related. It's been a crazy experience and one I'll never forget.

I actually thought I was getting somewhere with my clusters and damaged nerves but reality is I just seemed to have a break. I was excited last year as my attacks reduced right down and the nerve seemed to ease and I found I could get out and about more and move around better but this was short lived. As soon as winter hit and the cold weather started the pain returned and so did the clusters.

It's really obvious that the nerves are aggravating the clusters and when in full cluster attack the nerves actually light up and join in so not only do I have to deal with the cluster attack but also severe pain down the left back, arm and leg.

Due to having so many health issues since the clusters began I was told to have the vaccinations to protect me from the covid infection, after the first I was a bit rough and the second made me lethargic for a couple of weeks but I didn't really have problems. What I did notice is suddenly my clusters began and they would not stop. The attacks seemed completely out of whack with my body and the times I would normally get a cluster were clear and the attacks would come out of the blue with no pre warning signs.

After suffering for all these years I can vertually predict some attacks and know when during the day they are likely to come, especially when we have bad weather. It's as if I can feel the high and low pressure changes  have effect on my head.

Since having the second jam this was all out if sync for around 2 months then seemed the settle back into my regular cycle with the new addition of stabbing pains in the right side of my head.

Well I have fought through the attacks and although this year has been a living hell I still feel I am managing to control them and keep them from getting unbearable again but at this rate I don't  know for how long i am hoping things will calm back down again as seasons change.

The back issue and the bottom of my spine has become a real problem now and despite it easing last year it has just become worst and feels like it's slowly spreading. I never knew the spine could give you so much pain it's really unbearable and makes you vomit the pain level is so high. At first I thought I had done something to my back and hoped that after rest it would ease and go away. This isn't the case and the problem comes and goes. It seems to last several days then I get a break with just very mild soreness on the bottom of my spine and then it returns. It seems to be worst during wet cold weather so at first I thought it could be arthritis but surely you shouldn't get such a high level of pain. Until they scan it I just haven't a clue what's happening so I just gave to continue with the battle.

The neck has now spread to both sides and the pain is no longer just in the side of my neck but also in the center of the back of my head where the spine meets the skull. No matter what I do every movement causes different levels of pain and it even effects my shoulders and arms. 

I was told it was damaged nerves in the neck on the left side but something tells me they got it wrong. I now have pain down both sides of the neck, down the upper part of my spine to the middle of my shoulder blades, pulling down on the back of my head causing stabbing pains in right side of the skull. When I move my  head all I can hear is popping, grinding and crunching to add to the pain it gives off. The worst bit about the neck issue is it effects my arms and hands and I get problems and pain with the fore finger and thumb on both hands with swelling coming up in the back of the left hand.

It's crazy what's going on at the moment and nothing I can do except wait for appointments that could take a while to appear due to the issues of covid and the stress it's putting in the NHS. I have to admit tho I do feel as if I have been swept under the table and forgotten about. It's now coming up almost 2 years since I reported the new problems and other than it getting worst nothing else has happened and I am still sat waiting, fighting pain, fighting clusters.

I have tried staying positive, keep trying to exercise the problem areas and get on with things but the pain just becomes too much to bare in the end. I even tried to get back out fishing again this year, put on a brave face and get out in the fresh air wich was enjoyable to begin with but felt like torture buy the end of it. I need to get something sorted as I don't want to loose my fishing it's the only thing that keeps me sane. 

How much more can one person take......