Tag Archives: not give up

Hospital hell.

Well Ive not blogged in a couple of weeks because Ive been in and out of hospital. It has not been a nice few weeks either… not that any time in hospital is nice but this couple of weeks experience has been exceedingly bad. Ive had everything from poor care to route staff and being discharged from hospital in severe (and i mean severe climbing walls pain!). Thats where I am at the moment. 

It all started Tuesday 29th July. I had a really bad day trying to keep my headache pain down, I had taken several doses of oramorph and had been on the oxygen a lot. It was helping to keep the pain down but the pain was not cope’able.  I finally managed to go to sleep in the late evening. I was so tired because pain is so draining. Id also had many seizures that day which in themselves are draining to a great degree. The next day (30th July) I woke with the pain again, Struggling through with the oramorph, oxygen and still having seizures I couldn’t go on any longer. The seizures got worse and mum called the ambulance. I was given morphine through a cannula in my hand and taken to hospital. By now the hour was late and we were into Thursday morning. 
The pain started to build up again, all i had done was move a couple of steps!. I was given more morphine through my drip. A nice Dr also managed to get blood from my other hand…. so this point I had 2 needles in ! 

I stayed in the CDU for a few hours where I was given drips to keep my blood pressure up and medication for the seizures and pain through the drip too. 
After I was moved to treble ward (the neurology ward). I was put in a side room and given oramorph when the pain was bad. However things were not all that easy. It was really difficult because the nurses were not all nice and happy and easy going.  The pain relief was also slow… Id have to wait up to half an hour in screaming pain before the nurse finally administered pain relief. It was hard. 
Friday the neuro team came and I was prescribes codeine. Varapamil (a strong heart drug that is supoes to help cluster headaches too) was discussed and prescribed. I was also put on the video telemetry for a few hours to see if they could see if the seizures came from a different area when I was in pain to not in pain…. I never did hear the result of that. 

The Next day the weekend dr came and he was lovely (really explained things and took his time to help). He prescribes Naproxin to try and sumatriptain. Id tried sumatriptain before and I wasn’t really happy about trying it again as It sent me into seizures but with the pain this bad I was out to try anything and everything. 
The naproxin was taking too long to kick in – i was spending up to one hour in severe pain before it would help by which time id either had to have oramorph or had started having seizures. 
Later the Dr came back and suggested I try a sumatriptain injection. I agreed. The nurse hadn’t done one of these injections before (i had) so I let her do it as I talked her through the self injecting gadget ! The drug kicked in pretty fast as I get a tingling sensation all over my head and my arms felt heavy…. But then it all went black as the seizures started. The drug made me feel very very ill. It was the exact same effect it had taken on me almost 10 months ago. The next day I just went from one attack to another. I was weak, not eating and very down. Pain is exhausting. 
Dr Wan had written on my notes that if i was having a bad attack oxygen was to be given and then Naproxin within 15 minutes then or if longer than 15 minutes…. Morphine was to be given. 3am in the morning and the nurse took such a long time (45minutes ) in administering the naproxin it had gone beyond that stage and I needed oramorph.  
I was in agony, I got angry that it was taking such a long time to get any pain relief and i demanded to see dr wan (who had said to call on him any time while he was on duty. The  nurse refused to call the dr and insisted on the night manager who never did come until 4am when the nurse did call Dr wan and he happily came. 
Naproxin was withdrawn as the benefits we nil because it didn’t kick in soon enough. Oxygen and morphine was all that was left. My notes now said oxygen for 15 minutes then if ineffective morphine to be given immediately. This way i was only enduring 30 minutes of pain rather than over 1 and a half hours. 

The next day i encountered a serious bad judgement of the staff of me and my condition. I suffered a cluster attack so grabbed the oxygen mask and started using the oxygen as dr wan had told me to. within 5 minutes the sister of the ward (who i had not even been introduced to) came into the room and told me to get off the oxygen. Shouting that its toxic and i shouldn’t be having oxygen. Not what you want to hear when your in screaming agony and doing exactly what the dr had told you too. I told the sister the treatment plan but it did not stop her. I was in tears as the pain was so bad and the situation was not good. Thank god for mum being with me. I love her to bits. 
The dr came at lunchtime and things were discussed. He admitted the treatments were trial and error due to the two conditions clashing. we were willing to go along with the plan  – we needed help.
Since being in hospital sleeping and rest was a big problem, i was getting very little and was exhausted. the noise levels we really high and 2 nights running a screaming patient had been put into the room next to me. 

One night I had a sudden pain in my chest. It was sharp and crushing. The nurse done my observations my oxygen level was 82%. My blood pressure 154/78 ! this for me was not normal yet they didn’t seem bothered. Mum and I were both concerned as i was on Verapamil (for my clusterheadaches yet was a heart drug). She did a ECG and sent for the on call dr to see. The dr then came up and suspected something called costrocondraditis – confirmed by an xray that i was sent for later that night. 
When I came back from xray the nurse was asked by the dr to take bloods. When the nurse came she looked at my arms. I asked her to go in the back of my hand as my veins in my arms were sore and rarely if at all in the past 4 years have managed to give blood. She refused and went in my arm. She kept prodding the needle in and out (it was extremely painful), still not able to get blood she kept trying… it had been over 10 minutes and i asked her to remove the needle – she refused. I was in too much pain asked a further 3 times and finally she did. I said try the back of my hand cos people can get blood from there…. the nurse threw the needle into the bowl and stormed out…. I never did get my blood test. 

The next day I had, had enough. I wanted to go home – i was exhausted , no sleep and staff being less than caring was not helping my situation. 
I have oxygen and morphine at home and could do the same care there and have sleep. we spoke to the dr who obviously didn’t want me to leave but understood it was the only way for me to rest.

I self discharged and came home – i felt like i could sleep for a week.
the dr had told me the treatment plan so i could continue that at home. 

I will not give up

When I was diagnosed with epilepsy all those years ago we were told the things that I could and couldn’t do, the things that needed to be watched and what I should and shouldn’t stay away from. Some of these made seance, others didn’t. Some because of my age then (4) didn’t apply anyway. When I was re-diagnosed as a teen some of these started to play a part whereas they hasn’t before one including not having a bath or shower without someone being about. Outside the door. This is one of the most frustrating things I think because having a relaxing bath isn’t as relaxing when your constantly aware that someone is sitting outside the door waiting for me to get out so they can continue doing whatever it was they were doing. I have only had one seizure jn the bath and i was startkng to get complacent again recently until However I realised once again how important this was. Tuesday night when I was relaxing after a long day I woke suddenly in the bath to find the water drained and my head hurting and me in the bath surrounded by soaking  towels. The feeling of pain from having a seizure in such a hard and restricted place my nose and throat sore from swallowing water and my contact lenses still in but really sore and hard in my eyes. I was lucky though… So many others have been where I am and not made it, the beast taking them to heaven. Just three months ago another angel was taken this same way. The risk of drowning in epilepsy is higher than you think. 

The next day I had another seizure and another and another. My head was hurting so bad and my painkillers weren’t working. I had oxygen on and there was not much else we could do for now. The dr wouldn’t come until it was worse. Well it got worse I can’t remember much of the next few hours. Mum had called the dr in panic and tears that if they didn’t come out and administer the emergency drugs now then we would end up in hospital which is useless for me now as my veins are so bad iv access is impossible with light going to theatre and the hospital staff get grumpy even though I cannot ho my veins being difficult to access! 

The dr came about a hour and a half later. I was given a series of injections one in my bum and two in my arm. All having a different purpose and all combined making me really sleepy and woozy. This is not an uncommon syndrome for me. So many times I end up in this situation of pain from the cluster headaches and the epilepsy seizures all at once fighting inside my body and trying to take over, they succeed and I end up poorly and bedridden for a few days recovering from the aches which my tensing muscles cause, the bruises and scrapes where I’ve hit something or knocked something down, and the wooziness nausea and anxiety this beast and the drugs cause. 

I eventually do recover. Able to move freely not in pain… Then another seizure strikes. Is it to remind me that my body isn’t actually mine anymore?  That it belongs to the beast of epilepsy? No because I will not give up! I will not let the beast take my body just yet…. I’ve too much I want to do. 

It’s taken part of my vision some of my teeth have been broken, It’s given me sprained ankles, dislocated shoulders, serious cuts and scars and that’s just physical. The beast still hasn’t broken me  yet. I will not give in. 

I’m really Tired and still feel unwell but I’m still positive too. 

I have epilepsy…. It does NOT have me