Tag Archives: injections

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. 

Hospital again and drug trial

Well things didn’t get better after the last blog. I ended up in the large hospital about half an hour away, my head pounding and the seizures not stopping. I’m limited into what can happen how as most the drs don’t want to take me to theatre to administer the drugs I could do with fast. So I end up with lots of muscular injections, oxygen and oral meds. I thought this had worked and we managed to get home Monday morning. Unfortunately this wasn’t the end.
 I ended up with one of my own dr’s coming out a few hours later as the hospital drugs wore off and I ended up in the worst pain known (cluster headache has really set in). Having epilepsy is one thing but add that to this disease called cluster headaches which is defined in medicine as “the most painful condition known to man” and life is somewhat harder. So here I was more injections and drugs. My neck was really giving me alot of pain too as Id hurt it in a previous seizure a few years ago and it is a recurrent thing which normally gets better after a few days…. this time it hadnt. It just added to the pain :-(. 

For the next 24 hours I lay in bed sleeping, waking intermittently and more sleeping. I was trying to keep awake but it wasn’t happening my body once again taking over.  

I did eventually manage to wake up and be more alert but the drugs were making me sleepy. I had to get an appointment for the dr that week so 3 days later (when I felt strong enough to get to the surgery I tried to get an appointment. Well like most Dr’s surgeries in the UK despite being told by the dr to make this appointment the guard dogs (AKA – drs receptionists) wont let you book an appointment unless you are dying which at this point I thought I was with my neck. 
The next day I tried again…. I managed to get an appointment with a dr I’d never heard of. 
This is normally a waste of time for me as not many Dr’s are willing to change any medication or do anything without my epilepsy and cluster consultant’s and London consultant being notified first. This Dr however was different. He was lovely. He even had a skill very far and few between Dr’s ……. he listened. 

After a chat and examination it looks like ive damaged my neck as Ive had years of seizures.The epilepsy medication damages the bones, nails, teeth and all things like that so with the combination of medication since i was 4 years old and the recurrent seizures slinging my neck in awkward positions it is not surprising. I received some pills for my neck and then he asked me many questions.. We now have some different injections for home as well and medication to help the seizures when Im going through a bad spell. I already had some but these ones are apparently stronger and the ones I normally have whist in hospital so should mean another step away from hospital. Great!. 

About a year ago now I was told that there was a new drug to help the pain I get from my head and seizures and cluster headache however it was strong and acts upon the heart. I was told to get a ECG heart trace which I did. This was given to my consultant and I was then told I couldn’t go on the new drug. I was not given much of an explanation to my satisfaction apart from it was not right. Therefore I asked this new GP what was wrong with my ECG. Apparently he couldn’t even find it so I am due for another trace on Tuesday. Fingers crossed I will get a better reading and be able to trial this drug and maybe get relief. 

In the mean time I am also staying at my nans during the day at weekends with my mum as my grandad went into have his leg straightened again on Monday. The week has been hard but Ive managed one hospital visit and im at nans as I type. I am so sleepy on the new drugs and feel like im under water. Everything I do is an effort but I am forcing myself to get back to normal. 

Yesterday (Saturday) I installed Laras Dreadlocks ! I had never installed dreadlocks in my life before but with the help of youtube (god I love youtube) I managed it… 
Im really pleased with the result and I think Tink is too.


Today Ive rested and Im on the strong meds again as my neck is pretty painful. It doesn’t seem to matter what I do or what position I am in it makes no difference so its just medication and grin and bare it. The seizures are still unpredictable as usual and I need to get my confidence back fast. 
A spell like this always makes me think about doing anything or going anywhere cos what if I had a seizure…. but if you live life like that you may as well not live at all. Grab the bull with both horns and have faith no fear. 


Tomorrow is monday and I so want to go to band practice. I am going to see how I go and maybe even if I sit out for a bit I will at least get to play something. 
I love my music and could really do with chilling out at band and not thinking about much while I play. I miss everybody too. Strange really as you rarely get to talk to many people while there but Its nice to be with people who I do class as really good friends. 


Kent Coastal Concert Band is an amazing band.


Nothingness and everything.


This is a hard blog but it had to be done. If you feel like this know you are not alone… I am there too. 
Xxx



“I don’t want to see anyone. I lie in the bedroom with the curtains drawn and nothingness washing over me like a sluggish wave. Whatever is happening to me is my own fault. have done something wrong, something so huge,  I can’t even see it, something that’s drowning me. I am inadequate and stupid, without worth. I might as well be dead.” 

― Margaret Atwood, Cat’s Eye




This pretty much sums it up at the moment. In the last week I have been through so many emotions. Happiness at living life and enjoying things on Monday to totally down and in trouble for the rest of the week. Yesterday I felt I was on the up again and today Im even further down than I’ve been all week. This time i feel I’m not mentally strong enough I’m loosing control of myself, my body, my worth I’m sitting here feeling like my heart and soul for life is not strong enough to battle this beast. I’ve felt this way before… Many years ago. I promised myself I wouldn’t go there again but it may be a promise I can’t keep. Even my promises to myself are empty. 


It’s harder because I thought I was crawling out of this ditch yesterday…. It was a “good as can be day”. I was happy… I went out in the car and it was lovely. Exhausting but lovely.
Today I am in the depts of depression because the beast is starting to leave its marks on me. Never did I think my seizures would impact on me like this… Ive been tough, strong, a tigger that always bounces back…. not at the moment. The beast is making marks.Maybe not so people can see when I put my mask of happiness on but to me the marks are like hard heavy dirty footprints in soft mud. 

* Medication has weakened my teeth and bones.
* Seizures have damaged muscles and ligaments.
* Headaches from seizures and the amount of seizures mean I’m taking more and more medication. 
* Seizures cause bruising, scrapes, cuts and scars. 
* Bad seizures that make my jaw tense and clench hard have broken teeth. 


Im loosing more and more confidence of my own body every day…. Wondering when and where it will let me down next. Always looking for somewhere to run and hide if I need to. The world being split in two… one that is the lovely world where I am normal and my mask protects me from everything and then the real world… where my mask is just a face I put on and sometimes this will fail like today.

I see mum struggle with things. She has her own problems with things but she struggles with me and the beast too. It’s impacting on her which I hate to see. It’s not fair on her. Would it be better if I want here? It’s got it’s grip into me, the beast of epilepsy will not let go at the moment. I want  to live life not be stuck in limbo where I feel at the mo. Mum struggles with grumpy being just that.. grumpy. Just last night there were problems – not to be discussed here but just that he acts as he does and makes life difficult for others. 

I am made to feel that this is something I have done wrong, something that I am making happen. Its not –  I know but sometimes it feels like I’m brainwashed by the end of the day to believe that the beast is here for a reason, I have done something bad and I am being punished with having epilepsy. I get minutes where I think Its not my fault but then he will say something and Its my fault again, and I believe it.
 I am “ruining the family” (his words not mine). I have “split the family – made his life bad and he doesnt have a life” ? 

Well I know in reality that this is not true.. He definitely has a better life than I do… at least grumpy has had 67 years of good health, friends, travel, two marriages – three children. Not that he has made right decisions or valued any of the above but he has had the chance to do this. 

I am 26  – had two serious partners one ended quite abusive and was apparently my fault again because of epilepsy and the other just couldn’t cope with me not being able to do things all the time because Id had a seizure that morning and couldn’t walk round the city that afternoon. I probably will never have children due to the pure amount of medication Ive been on since age 4. One Dr even sat me down and severely told me not to get pregnant. 
As for travel and just life well I had plans, they got eaten by epilepsy. Career? I had one…. That got eaten too. Friends? well I have some awesome friends but many have left because Im probably not the friend that they want – I cant go nightclubbing, drinking till pissed and all that stuff…. In fact Ive not been in a nightclub. 

So as for not having a life… maybe he should think again because from where I am right now I would love that life. Not only has he had one but he is now waited on hand and foot by a wife who despite all the shit she gets from him with nothing in return – not even just a civil conversation or thank you. 

Im not going crazy but I do feel depressed. Depression hurts, Its a pain deep inside the body, heart and stomach. It affects everything – I will stay strong. 


So here I am writing this depressing blog which no-one probably reads but at least if you are someone searching the web feeling like I do or have in the past… you may stumble upon me and this blog and realise you are NOT alone. This may be a depressing blog but life is not all smiles and sunshine. There are clouds too. Im in the dark black clouds trying to fight my way out. Hopefully I will. I am getting dragged to a place I don’t want to go again. 

Remember I love you all and appreciate everything.




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