Stimulator re-turn on day.

I’ve been a bit lax with my posts lately and I’ve been meaning to write this post since last week, but it’s been bit crazy.

Last Thursday it was my 23rd birthday, I had a nice day with my family and a meal out in the evening with them and some family friends. Overall the day was quite good and I didn’t feel too miserable despite often feeling a bit disheartened every year I get older and I’m no better if not worse health wise.

On Friday I had my reprogramming appointment at the hospital in London to turn my stimulator on and onto the burst settings. I had a bit of a tube dilemma getting there and ended up having to run from the tube station to the hospital, only to get there to find that the rep from the stimulation company had been told to come at 11am instead of 10am like me and my nurse thought. It was okay though as I caught up with my nurse and told her my normal headache had gone back to baseline which is still bad but not as bad has it was when the stimulator was on however I still had the extra headache at the back of my head. She said that she would talk to my neurologist in the week and discuss what to do and let me know as she said that if I still had the second headache despite the stimulator being off then there is another problem going on, but she couldn’t comment on what that could b, understandably. We then had a bit of a laugh and a joke about things whilst we were waiting for the rep and I was filing in some headache diaries. She then asked if I had been charging my stimulator this past month and I hadn’t been because I presumed that because it was off I wouldn’t have to, apparently that’s not the case but nobody told me. Anyway it had enough juice ton do the reprogramming thankfully otherwise the whole trip to London would have been a waste of everyones time. The rep turned up and it took all of 5 minutes to turn it on and program it, this burst setting means I’m not meant to feel the stimulation at all and if I do I just turn it down but otherwise I don’t need to do anything.
I then headed for a quick lunch with Jacqui who ran the Rock Bottom event that I wrote about it my last post, which was really nice. And then headed home because I knew I desperately needed to charge my stimulator battery. By the time I got home my pain levels were quite high but I hoped it was because I had had a busy and stressful day going to London.

On Saturday I wen back up to London via my Grandparents house in Surrey with my Mum and sister as last year my sister bought me tickets to see the Harry Potter and the Cursed Child West End show for my birthday; it books a year in advance so the tickets were for this year. Anyway the show was absolutely fantastic, the best show I have ever seen, great storyline, great special effects and costumes, just utterly spell-binding. We stayed in London over night and then my sister flew back up north in the morning and me and my mum went to have lunch with my grandparents for mothers day. Me and mum then spent the afternoon and night at my mums best friends with her family and had a really lovely time with them. My pain levels throughout all this were still not good, however I still was thinking that it was probably due to having a busy few days. On Monday my Mum flew to Dubai to spend 3 weeks with my Dad and I drove back home.

I decided to ensure that I had a quiet few days this week to try and see if my pain eases and rule out the possibility that it’s actually worse because my stimulator has been turned back on. Unfortunately it’s still quite bad and I’m not feeling too optimistic. My nurse called me yesterday after speaking to my neurologist and he has said he wants to move my next appointment which was mid June forward to the 25th April instead. I’m pleased and thankful he is going to see me soon but I’m worried and concerned that it’s not going to be good news about my extra headache. I haven’t told them that my normal headache is worse again since the turn on of the stimulator as I don’t want to be too presumptuous about it. But I’ve said to myself I will give it till my appointment on the 25th and if it is still bad and has not improved I will be asking for it to be turned off and will be asking about removal of it.

To be honest I’m starting to feel more and more upset about the fact that I really don’t think this surgery is going to be a success and so far it’s just been a complete nightmare. I fought so hard to be able to get this surgery for me and everyone else on the list at the hospital. I know in my heart that despite now regretting having the surgery, I know that if I hadn’t have had it I would have always been wondering if this was my answer. But unfortunately I don’t think it is and I feel completely heartbroken about it. It’s left me worse than before I had it and I was not prepared for this. I struggle to find the words to explain fully about how disappointed and heartbroken I feel right now and I haven’t really told anyone about how I’m feeling about any of this. I’m also very very good at pretending I’m okay and not talking about how I actually feel so nobody is none the wiser.

Anyway keep you updated on the stimulator issues.

Wishing you a low pain day!

 

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Latest appointment with my Neurologist.

I had a very interesting appointment with my neurologist in London yesterday. I’ll start off by saying that I’m very grateful to have such a good neurologist who genuinely cares about helping me and takes time over my appointment. Before I met him I had had some very bad experiences with neurologists in both Dubai and London. When I met the one I have now I instantly breathed a sigh of relief that I had finally found someone who cared and understood. We have been working together for 6 years now, in some sense we haven’t made much progress but that’s not for lack of mine or his attempts, just my stupid headache. But unlike other neurologists he has not given up and he won’t give up, I will forever be grateful to have met him.

My appointment started off by seeing one of my neurologists headache nurses who does my reprogramming of my stimulator. I told her what had been going on, that I had an extra headache at the back of my head since surgery and that my normal headache was still worse, we went through numbers of the pain scale and where my pain usually sat during the day, which is from a level 8 to level 10. She then looked over my system and decided she didn’t want to do anything till she spoke to my neurologist. So I went back out to wait to see my Neuro.
He called me in and I told him how much I was struggling with everything that has been going on. He then said he thinks I am part of a very small percentage of people who’s brains cannot tolerate stimulation and the feeling of it. I guess I had already figured this out because of how much worse I am and how much the feeling of the stimulation makes the pain worse. But he said that they had put the latest stimulation tech in me which has the new capability of this burst system which is stimulation that goes on and off without you realising and you cannot feel the stimulation. So he thinks this might be better for me so wants to try it as soon as they can get the stimulation company rep to come to the hospital and sort it out for me hopefully in the next couple of weeks. In the meantime I’m to keep my stim off and he said hopefully my pain may calm down slightly.

He then asked me if my skin on my face was always red and blotchy I said well yeah it is quite a lot, my mum comments on it a lot. He rolled up my sleeve and took his blunted pen  and pressed it down in a zig zag motion down my wrist. Within about 2 seconds I had an insane reaction of severe redness. He said it’s called dermographia which is. skin condition. He then asked me to go through the Beighton scale, which is the test of Ehlers Danlos Syndrome, which I am already diagnosed with along with Potsural Orthostatic Tachycardia syndrome. To be diagnosed with EDS you have to score a minimum of 4-5/9 I score a 6. I think he wanted to go through it to show his colleague about it in real life as it’s not particularly common. He asked me some other questions to do with stomach issues, I said I have a temperamental stomach and I keep getting a rash in the crook of my right arm, I thought I was allergic to something like milk so cut it out and it hasn’t particularly helped so I don’t know whats wrong with me. He told me I have too much histamine in my body causing all these symptoms. He said people with EDS are more prone to histamine issues. He said that in a very small percentage of people with headaches who have histamine issues, that treating the issue in some cases made the headaches improve ever so slightly. He wants to put me on some histamine blockers and wants me to follow a restrictive diet. Having done some research and spoken to a couple other chronic illness friends, I actually think I might have Mast Cell Activation disorder which is causing the histamine issue, so that is something I might explore.

Maybe I should be happy he found something wrong with me,  and yes I’m glad my neurologist spotted this, but I actually feel really upset. I don’t feel joy to the fact that treating the histamine issue may improve my headache and yeah don’t get me wrong I wish that would be the case. But I feel upset that my body is not normal, that my body does not work the way it is meant to that I have yet another thing wrong with me. That I have to go back on medications after I was just about to be medication free for the first time in 7 year, as I’m withdrawing slowly from the last one. But now I have to go back on meds and follow a very restrictive diet which is probably going to make me miserable in itself. That being said I am going to try it all and see a dietician about it, but I feel very upset about it. And don’t get me started on the fact that my brain can’t tolerate stimulation because that’s just fucking brilliant. I feel like crying at the minute, why does my body not work properly.

If anyone reading this has similar issues with histamine, or Mast Cell Activation disorder please comment or email on iamtheneverendingheadache@gmail.com as I’d love to hear your experience.

I’m sorry but I disagree.

I disagree with the statement that pushing through the pain is possible for me, that I should just go about a ‘normal’ life like someone who doesn’t have chronic pain and live despite my chronic pain. That I should be able to ignore it, that after 7 years of it I should be use to it and therefore it shouldn’t bother me. I disagree with the statement that just because I can do things like exercise or pop out to the shops means I could work a full time job, I’m sorry but you don’t quite understand.

See I try so god damn hard to function as much as I can despite my pain, but when I try to do normal things like study or work my pain has a tantrum like a two year old that’s hungry, actually that’s not entirely accurate as it lasts way longer than a two year olds tantrum. My pain revolts, it gets so angry I’m left in more agony than normal and completely bed/sofa bound for what could be weeks on end. So when people say I should plan for the future or I should push through the pain it actually makes me really angry as I really don’t get how I can. I’ve tried so many times, I take one step forward into the real outside world trying to be a normal functioning member of society but soon after I am catapulted two steps back into my bed with pain levels through the roof. And when my pain is that bad there’s no hope in hell that I can function.

So my question is, if my pain does that when I try to do something how on earth am I meant to push through the pain and be a normal member of society despite my chronic pain? Because I really don’t understand how that is possible.

 

Was it a big mistake?

I’ve realised recently how many unresolved feelings I have about my illness, and how none of them have really changed over the years. It doesn’t matter how much I try to escape my pain, how much mindfulness I do, how much I try to accept this condition or even all the many many treatments I’ve had, my never ending headache still remains as strong as ever.

I’m 2 and a half months post surgery, the tweaking they did a few weeks ago (when they finally realised I was being severely overstimulated and it had caused allodynia hence the severe nerve pain at the back of my head where I could feel the stimulation) has relieved the allodynia but I am still experiencing headache pain at the back of my head which is not normal for me it feels like my normal headache has doubled in size. I haven’t really told anyone about it as I don’t want to let everyone down with the fact I’m still in a lot of pain. At the minute I’m in Dubai with all my family spending Christmas and New Year here as my Dad lives here, right now I’m led in bed in agony. The pain is horrific and has been since last night.

I know I should be positive about the outcome of surgery and I know it’s still really early but I have a gut feeling that the surgery I had is not going to help me. Which leaves me to feel completely and utterly upset and helpless that my last ditch attempt at a life with lower pain is not going to be successful. That I’m going to have to live with extreme pain for the rest of my life that prevents me from doing anything worthwhile, from being independent, from having some sort of resemblance of a normal life.

A lot of my feelings have come bubbling to the surface recently, feelings I buried deep within quite some time ago. The anger I feel towards life, the depression that comes with chronic pain, the complete and utter loneliness that I experience and the distraught I feel towards the loss of my normal life nearly 7 years ago now.

I’m trying hard to keep everything together, I mean it’s Christmas for fucks sake, I should be happy, right?! But at the minute I’m a mess, it’s also quickly approaching the 14th January, a date that messes with my head, the date it all started 7 years ago. Yes you say it’s just a date it shouldn’t effect me, but I feel like I lost so much 7 years ago on that date and it sends me down a deep dark spiral every god damn year.

I wish one day I could write a post to tell you all that I’m miraculously better or even just that surgery has reduced my pain; I’d settle for that. But I don’t think that will ever be possible. I know my headache better than anyone and I feel like it’s here to stay. I feel like it doesn’t matter what I try my headache will always win and no one can do anything about that.

6 years…

January is a difficult month for me to say the least. Yesterday was my headaches 6 year anniversary.Every year that goes by doesn’t get any easier and this year was no different. 6 years is a long time for anything let alone to have been in constant pain for, which takes it’s toll.
I’ve had a month off the job/apprenticeship I recently started. A combination of being really badly normal people sick and the pain flaring. So it hasn’t exactly been the greatest month anyway let alone to add in that I find January particularly difficult anyway, because of the anniversary.
I wish I was strong enough to celebrate my 6 year anniversary as surviving 6 years of chronic pain and everything that has brought, but I honestly don’t feel like celebrating my worst enemy, the thing that has caused me so much pain, misery and heartache.
So yesterday I was sad for everything I have lost, all the problems the pain has caused and all my dreams the pain has ruined. I’d like to say today I have cheered up, but it’s been just has hard.

So happy or should I say unhappy 6 year anniversary headache.

 

Straight back into flare up.

Went back to college last Tuesday after two weeks off for Easter. I had a good Easter, got out of flare up after about a month of high pain, and had relatively low pain whilst I was off college. However going back to college last Tuesday has sent me straight back into flare up. High pain Tuesday night, high pain after college on Wednesday and all evening, spent all of Thursday in bed with high pain. Friday I had a bit of a POTS episode and had a massive seizure in the bathroom, which resulted in me being in bed all day again Friday, because my blood pressure and heart rate weren’t playing ball and my pain was bad also. Saturday was also spent in bed with high pain. Sunday I managed to go to work but as soon as I got home I needed to be in bed, and today I’m in bed with high pain.

I have a mock psychology exam tomorrow at college, but because the pain has been so high and I have had to be in bed with it pretty much for the past 5 days I haven’t been able to study for it. We know what the questions are but for the life of me I can’t remember any of the information, definitions, studies or evaluation. It takes me a long time going over something to be able to remember it properly and I just haven’t been able to do any of that. I’ve emailed my teacher giving her a heads up that my pain has been bad and I have been bed bound the past 5 days and therefore haven’t been able to study, so if I took the exam the likelihood is that I would fail it. I’ve decided not to go into college tomorrow for the exam, because I know what I am like, I will sit there looking at the exam paper, not knowing the answers to the questions so I would stress and stress myself out and get overwhelmed and anxious and possibly have a bit of a breakdown, which is not good for my already bad pain. Therefore the best decision for me and my health is to not put myself in that situation. My teacher emailed back saying that it’s okay if I don’t feel well enough to come in tomorrow and that if I feel able to I can take it on Friday with the other class. So hopefully I may be able to get a bit of studying in before Friday and take the mock exam then.

Though I am really annoyed, I have practically only just got out of a flare up, only to go back into one less than two weeks later. Not a happy bunny!

This flare up is getting to me.

Feeling a bit down and fed up, still in flare up pretty sure I’ve been in it the majority of March as I haven’t had many good days; well actually I’ve only had a couple, my birthday included in that. Sometimes it takes me a while to figure out I’m actually in flare up, sure I know the pain is bad and that I’m having consecutive bad days but it’s almost like if I don’t admit I’m in flare up maybe I won’t be. Probably doesn’t really make much sense, but somehow in my head it does! Thursday was the worst day, possibly one of my worst ever pain days. Since then it hasn’t been quite as bad, but not good either. When I go into flare up for a while I feel okay and able to cope, it’s only after quite a few bad days that I start to feel down, fed up again and wonder how the hell I’m going to get through more days like this.

College has been particularly difficult the past few weeks, so much so several times I’ve had to leave the lesson early and go home, or I barely manage it through the lesson and end up back in bed as soon as I’ve got home. I haven’t been able to do any work outside of college either, all my spare time recently has had to be spent mostly in bed. Taekwondo training has also taken a back burner as I haven’t felt up to going, and know if I push myself to go it will only make things worse.
Yesterday I had my psychology lesson and we were learning about depression, which was fine because I really don’t have a problem with talking about depression and such. However what does get to me is ignorant people’s opinions on the topic. Apparently according to this extremely annoying person in my class no one with depression has any empathy. This really got on my nerves, I have so much empathy yet I’ve had depression for 5 years, some of the most empathetic people I know suffer from depression. I told her I disagreed with her and that she was wrong, she insisted that she wasn’t which made me so incredibly angry that people with depression were being portrayed as having no empathy which is not true in the slightest, so I got up and left the room before I really lashed out and said something I may have regretted. Shortly after my friend came out to see if I was okay, so I had a chat with her and then shortly after we went back into the lesson, tried to put it behind me and got on with the lesson as best I could with the pain being bad.

Yesterday after getting home and waking up from a very long, deep and much needed nap I had an email waiting for me in my inbox from my law teacher with my assignment results that I had been waiting for for ages. To my complete surprise and delight I got a distinction in the research plan assignment and also a distinction in the research report assignment! Completely thrilled and definitely worth the wait. I have one more assignment in law and then that subject is done, and then I have an exam in psychology to do in June and then I’m done for the year. Bit concerned about the exam as I don’t believe I am very good in exams anymore, however I have been known to prove myself wrong so you never know! Two weeks off for Easter now, got lots of work to do and I’m hoping this flare up will calm down so I can do it, if not well I’m not sure what I will do, but at least I might have a chance to recover from this horrendous flare up without having the pressure of having to go to college for lessons.

Also booked a trip to Dubai in May, when I’m off college for a week. In hindsight it’s just before my exam so maybe not the best idea but I want to go, and I will take all my exam prep with me and do work out there so it should be okay. It also means I get to pick my sister up on her last ever day of school and see her off to her last ever prom. Oh wait, I mustn’t forget to mention I will also get to see my Dad which is always nice as well! It’s always nice to spend a bit of time in Dubai with my Dad and sister, so looking forward to that in May.

I hope this flare up dies down soon, not sure how I’m going to continue coping as the pain is so awful all of the time at the minute, really takes it’s toll, feel very down the past week ish.