Once again I have been holding back on my blog hoping for a miracle I suppose. Since I was diagnosed with the damaged nerves in the neck and back and started to understand how it was effecting me and how it aggravates my clusters, I have noticed a huge decrease in the amount of cluster attacks I get. By learning to manage the neck and back and the pain that it brings I have found that it has stopped triggering my cluster attacks on a regular basis. The worst part of it is that instead of getting a few attacks per day with the odd day pain free, I am now finding that I am getting the attacks in bouts.
When they start I don't just have the odd one or two attacks now I get a string of them in a row. Sometimes I can have 8 or 10 attacks all in one day and then it can stop for a week or so and then start again with another bout with again a high number of attacks through the day. I don’t know why they have changed like this and maybe its just the normal coarse the attacks take but for some reason it seems like they have become stronger than before and even worst pain (if that’s at all possible). I have also noticed that I am struggling to stay on my feet all day as when I do I find myself in a lot of pain up the left side of my back.
I know the pains in the back and down the leg and across the chest are from the damaged nerves in the neck so I tend not to worry so much when the pain comes but I can’t help becoming nervous and scared when the chest pains start and I get that sharp pain over the top of my heart. I know deep down its not my heart but it still scares the living daylights out of me each time it comes. I am using gels and pain relief but this doesn't seem to touch it and I can’t take the stronger pain killers so I have to ride the pain out each time it comes. Something else I noticed also was when I have a cluster attack and have to take my medication (injection) not only does the injection stop the cluster attack in its tracks if you take it quick enough but it can also help ease the nerve pain in the back. unfortunately I can’t take them for that reason and only being allowed 2 in any 24 hour period means its not a viable solution to all the pain.
Every time I make an appointment and tell the doctors about the pain and what's going on they always refer me to cardiology thinking it can be the heart and after loads of tests they tell me its not the heart its nerve and muscle pain, then they seem to forget that's what the issue is and I don't need the heart investigating I just want to know why I am getting the pain and why it wont go away and keeps scaring me. I feel it has something to do with the Hiatus Hermia but they never seem to investigate it further to see what's causing it they just say its not the heart , all is ok and send me on my way to continue to suffer with the pain and problems.
It’s great that I am now getting more days with out cluster attacks but I have lost the pain free days altogether. I no longer get pain free days due to the back and neck always causing some kind of pain and discomfort. I am sure it is the nerves in the neck that actually caused my clusters to turn chronic. I think I would have stayed having the odd couple of attacks every 4 to 6 months if it wasn’t for the nerves in the neck becoming ultra sensitive and being damaged by something. I think the nerve pain is what was aggravating my clusters and now I am managing the nerve pain it seems to be working and the attacks have really decreased but its still way too early to tell. Winter is just around the corner along with the cold winds and low pressure so I am waiting to see if winter becomes the nightmare it usually is with the clusters.
