Once again the cold weather has brought on the cluster attacks. Each year i have noticed a steady decrease in the amount of attacks i have during the colder months but its always the worst time of year. This year has been no different except the last month (November) I have seen my attacks jump right back up and i only managed 2 days attack free through the entire month. I was averaging 3 to 4 attacks per day and no matter what i did to try and abort the attacks nothing seemed to work. The injections just seemed to take for ever to take effect and i found i still had to fight 15-20 minuets of the attack before the injection started to take hold. The oxygen , which has been a god send, although it eased the level of pain, didn't seem to work as well as it usually does. I am wondering if i have done something to the damaged nerves in the neck and that's why the attacks have been so bad.
The problem with having damaged nerves in the neck is that the pain always seems to aggravate the head and this usually ends up setting off my clusters. I have been put back on Pregabilin tablets to see if that will help not only the clusters but also the nerves in the neck. Up[ until the start of November they had started to work well but when the clusters started at the beginning of the month i could feel a constant ache in the left side of my neck, the same side i get my cluster attacks on. This is what makes me think it is the neck setting off the bad attack. Now the month has gone and ii have started taking it easy the attacks seem to have eased and i am starting to get a couple of attack free days. I wish they were also pain free but the back and the neck has put stop to that and i find that every day i end up suffering some kind of pain but i have become so used to it now it feels normal.
During the summer months i usually get the doctors to reduce my Injection script as i don't need so many and the ones i don't use end up going out of date as they have a short shelf life so instead of wasting the medication i usually only have what i need when i go to the chemist. Well this caught me out this year as the doctor reduced my injections down to 20 (10 days worth) so when the month started, half way through i ran out of injections and no way of getting more. When i tried to ring the doctors for an appointment they told me 2 weeks minimum waiting. By that time the month is over and a waste of time. The doctors have gone downhill over the last 10 years. You no longer get a regular doctor that deals with you, now days you get to see who ever is available at the time and hope they know about your medical history. If the don't they tend to fob you off saying they don't want to interfere with the treatment from the Neurologist and are reluctant to help you unless you have something in writing from your specialist. It is really becoming a joke as no matter what problem you go in for the doctor no longer deals with it and refers you straight away. Then you have a long wait for an out patients appointment at the hospital.
The amount of times i have gone to the chemist to collect my medication, as it is monitored on a weekly basis due to the type and amounts of medication i require, and have been told the doctors haven't even done the script and the medication is not ready is just crazy. Then you have to keep going back and fore until they manage to get the script from the doctors. Last time it took 3 attempts and a phone call to the doctors complaining just to get my script from the chemist. Its really starting to get me down and become problematic as its very painful walking back and fore the chemist several times in a day, especially as you have to walk up a big hill each time to get to the chemist. The doctors attitude... we are busy ......and they just don't care. When i explained to the one receptionist on the telephone that one of the medications was time sensitive and i would end up going into bad withdrawals her replay was "sorry nothing i can do, come back after the weekend" They were actually willing for me to suffer full on withdrawals for the entire weekend. Not only is the impossible for me to do it could also put me in a bad way in hospital and possibly even kill me. I just couldn't imagine going through withdrawals and dealing with full on cluster attacks at the same time. Thankfully my chemist is brilliant and he got on the phone and explained the medication and the problems with them and made them sort the script out that day. This is now the 4th time this has happened and the chemist has had to sort it out. You would think the doctors would be a bit more professional and careful with this kind of medication.
I have been told a few times to change doctors but when there isn't many choices and you are reliant on strong medication on a daily basis its very difficult to mess about changing surgeries etc. So all i can really do it bite my tongue and bare it. I promised myself years ago that i would fight this condition until i take my last breath and would not give in. The trouble is as time has gone on and things have become worst it seems like i am getting less and less help from the doctors and that they just no longer care. It makes me feel that as they know my condition is not curable and there is nothing they can do to help me I have been swept under the table and all they now do is appease me when i go for my checkups just to keep me quiet. When i complain about my back, neck or clusters all the doctor does is shrug her shoulders and say " Just take one day at a time" WTF! I really don't know how much more i can take. At the moment my mental health is at its lowest its ever been due to all the problems with doctors and medication i have been having. I no longer see any light at the end of the tunnel and i now feel like i am lost and don't know what direction to take.
The one and only thing that has been keeping me sane all this time is my fishing. trouble is in winter because my attacks getting worst and the pain gets stronger due to cold weather I don't manage to get out fishing as much as i would like to and this does take its toll on me. For the first time in my life and since all this began years ago i can honestly say i am STRUGGLING! Fingers crossed its starts to improve soon as i really don't know how much more my body and mind can take;.
