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!

 

Rock Bottom – rising from the darkness.

Last week I went to this fantastic event in London, all I knew about it was the title which is quite self explanatory and that it was being partly run by someone who has some chronic illness’. I was really nervous about going, I’m not very good socially with people I don’t know really well, but in the end I was so glad I didn’t chicken out and that I went because it was fantastic.

I arrived at where it was being held and there wasn’t that many people there yet, I greeted the people running it briefly and sat down anxious as hell. I ended up talking a lot to Jacqui  and Bash who were running it, turns out Jacqui has some of the same conditions I have so we really got on well and had a lot to talk about. She had advertised the event on the Mast Cell Activation Facebook group which is where I saw it, I was the only person in that group who came which struck me as odd actually as I think a lot of people in that group could have benefitted from coming.

The event started and it was basically Jacqui and Bash’s stories of how they hit rock bottom through a combination of trauma and illness and how they basically rose from the darkness and have taken steps to overcome it and move forward out of the darkness and on with their life. I won’t go into their stories, they’re not mine to tell but they were incredibly emotional, relatable and inspiring and I left feeling incredibly grateful that they had shared their story with me and very inspired to continue trying to get better myself.

I’m actually meeting up with Jacqui on Friday after I’ve had my stimulator reprogrammed, which should be really nice as she is lovely and we have a lot in common because of having some of the same conditions. So I’m excited to chat some more with her.

I am so glad I went out of my comfort zone to go to this event as just hearing their stories has really made an impact on me. So thank you Jacqui and Bash!

 

 

 

My immunology appointment.

I had an appointment on Monday with an immunologist near where I live, he was recommended on the Mast Cell Activation group on Facebook. He was quite nice and I liked the fact he took the time to explain the medicine behind the things he was saying, being a bit of a medical knowledge junkie, I appreciated that. And I appreciated the fact that he listened to what I was saying, a lot of doctors I’ve seen over the years haven’t really ‘heard’ me. I explained my history, the problem, my extra unexplained symptoms and the issue my neurologist thinks I have.

I asked him whether he thought I had a problem with histamine and or Mast Cells and he said at this stage it would be hard to say but he wanted to do some blood tests to check a number of things but mainly my Tryptase levels, he said that if this was elevated it would indicate that there probably is a problem with my Mast Cells. (I have read that this actually isn’t the most accurate test for Mast Cell Activation Disorder, however we will cross that bridge if they come back as normal.) He gave me a prescription for the meds my neurologist suggested to try me on, but changed the dosage of one to be slightly higher as he said the level my neuro wanted me on was too low to be therapeutic. He said that this is what he would initially prescribe someone anyway, and to try a course for 2 months and see if it made a difference to my symptoms and my headache. If my blood tests come back with elevated tryptase levels he said that would open up other treatment options and we would then discuss what to do next.

I started the course of three medications yesterday, one is an anti-histamine, and the two others are Mast Cell stabilisers. I’m not too thrilled to be back on medication, as I’m nearly done withdrawing from the only medication I was on to help me sleep, but it doesn’t do it’s job anymore so I wanted off of it. I was looking forward to being medication free for the first time in 7 years, but now I’m back on three different meds. The immunologist did say though that I hopefully shouldn’t see any side effects from these meds, so hopefully that will be the case. I hope these meds help my ongoing symptoms that have been progressively getting worse and if this is not the answer to them then I don’t know where to go next. And maybe by some miracle it may help my headache, though I’m not too optimistic about that.

Keep you posted.

Can you be ‘fixed’ in 8 sessions of therapy?

Along with having my surgery in September I was given psychological support form the hospital I am at in London. At first it was a temporary psychologist whilst the ONS surgery service employed a psychologist to be on their team. I saw the temporary one for 4 sessions and it was going okay, and then I got moved to the new ONS service one. I’ve been with him since the start of the year and I’ve spoken about it on here a bit before.
At my first appointment he asked me what my goal was, and I replied to feel better. By better I didn’t necessarily mean my headache would miraculously disappear, though that would be lovely, instead I meant to feel less miserable all the time. We agreed with a set of 4 sessions before reviewing it.

To be honest in the beginning I wasn’t too keen on him and his approach, the sessions made me very anxious, still sometimes do, but my anxiety levels within the sessions have improved as I have got use to him and the approach. It’s been going okay, and I’ve become more aware of my emotions within the sessions, how I feel when I talk about certain things in my life and where I feel that feeling in my body. I have improved with time but I wouldn’t say I was any less miserable unfortunately. At the end of the initial 4 sessions I said I’d like to keep going and we agreed another 4 but then that would be the maximum they would be able to offer me. I know I won’t reach a goal of being less miserable, and I honestly don’t think that is possible in only 8 sessions, I also don’t think that most people with complex issues would be able to go from depressed to somewhat okay and ready to leave therapy in basically just over 8 weeks. I’ve been in therapy 7 years and I’m still not there. I know not everyones the same and people have different problems and yeah maybe 8 sessions would be enough for a small number of people, but for a lot it’s not and where do people go once they get discharged from their 8 sessions? It also makes me wonder why people wonder why we have a mental health crisis on our hands this day and age. With my experience with some NHS mental health care I completely understand it. People don’t get better, local mental health teams are often shocking, I know they are in my area, and then not enough therapy is offered (that’s if and when it is offered) so therefore people don’t get better. I get that the NHS is often overworked and understaffed and staff work really hard to look after patients, but often mental health care is lacking, trust me I know I’ve experienced it.

As I near the end of my 8 sessions I know I won’t cope well without therapy, so I’ll have to find an alternative. I also wonder if I will ever reach a goal of feeling less miserable, it seems like I’ve been trying for 7 years just to feel somewhat slightly better but I’ve never got there. I question whether being less miserable is possible for me, or whether I’m destined to just be the way I am for the rest of time? I actually feel like the total of 8 sessions I will have had will have been a waste of time when they can’t be continued to reap any long term positive effects. I’ll start again with someone else, maybe my old psychologist or maybe someone new and that could possibly mess up thought processes or effects the past 8 sessions have had because of another outside influence with different thoughts and ideas. What was the point in the past 8 sessions, because I feel that once they are over because they were so short term that they will have effectively been pointless and that frustrates me because I was improving.

I get that maybe short term therapy works for some people, but I believe that for people with chronic pain or illness, which influences so many aspects of your life they may need longer term work. Especially if they’ve been sick a long time, perhaps there isn’t much hope of their health ever improving. I’m sorry but how can 8 sessions fix how you feel about spending the rest of your life sick and in pain, as someone who knows first hand and fully admits that they need psychological help and support, for me I know it’s not possible for in 8 sessions to be fixed and ready to be discharged.

I pride myself with always being honest on here, and that’s my honest opinion.

 

I feel defeated by my body.

Why does my body not work properly? How did I get so unlucky to have so many things wrong with it? Will I ever catch a break? Will I ever get any better?

These are questions at the minute I ask myself daily, I just feel defeated and worn down to the ground.I have an appointment booked with my GP on Friday and then on Monday I have an appointment with a immunologist. The 18 different extra symptoms I’ve been dealing with for over a year could be explained by a histamine intolerance/Mast Cell Activation Disorder, and they’ve been getting progressively worse. My neuro wants me to start some meds for it but I’d like it investigated further before starting any treatment which could mean any tests done for it would be inaccurate if I had already started the treatment. So hence the immunologist appointment on Monday. Hopefully it will go okay and might make me feel a little better about the whole thing but at the minute I’m still feeling distraught that there is probably yet another thing wrong with me.

My stimulator is being turned back on for Burst programming on the 24th of March, I’m not feeling too optimistic that it will be any better than the standard Tonic programming of before, but I’ll just have to see.

In other news in 23 days time it’s my birthday and I will be 23 years old, it doesn’t fill me with joy, instead it fills me with sadness. I’m going to be another year older yet I’m still no better, if not worse than I was when I was 15 and this all started. I’ll be another year older yet I have not achieved anything I’ve wanted to, I’ll probably never be able to hold down a job, I’ll probably never move out of my parents, probably never have a relationship or a family. All because I’m sick, all because of my stupid never ending headache which I loathe so much. So I ask you, what is the point? I just feel so unbelievably defeated by everything at the minute that I don’t know what to do anymore.

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.

Victimised in London, first time feeling unsafe.

I had a bit of a horrible experience in London last Friday. I was sat on the tube on the way back to Waterloo to get the train home and a couple of seat down from me were two black guys who looked like some sort of construction workers as they were carrying hard hats. They were a bit odd on the tube but I didn’t really think anything of it, I got off at Waterloo and they got off behind me and started shouting at me ‘excuse me lesbian’ several times and really loudly. I ignored them despite knowing they were talking to me and carried on walking fast so I could escape them. I got on the escalator to go up to the main station and looked behind me and they were on the escalator next to me waving and blowing kisses and saying inappropriate comments. I felt quite threatened almost like I was about to be a victim of some sort of hate crime, so I quickly power walked away and got on the first train home not wanting to hang around.

Firstly shouting at someone saying lesbian is most definitely not appropriate behaviour whether they are gay or not. And it just so happens that I’m not even gay so his assumption was completely wrong, probably because I have a short hair cut. Which is ridiculous really, just because someone has short hair does not automatically mean they’re gay, and likewise just because someone has long hair does not mean they’re definitely straight. And whether I am gay of not it is not okay to shout ‘excuse me lesbian’ to someone anywhere or anytime, it makes you feel very victimised. That was the first time I have ever felt unsafe in London and I was surrounded by loads of people who didn’t even bat an eyelid as to what was happening.

Anyway it’s valentines day, my mum bought me flowers (bless her) because no one else will. I haven’t had much luck with men so I’ve kind of given up, no one seems to want to ever be with me once they see just how sick I can get. Who wants to be with someone who can’t work or study so doesn’t do an awful lot, who’s life is dictated by the pain in her head, who has depression and anxiety so bad they avoid any and all social interactions with unknown people and people of their own age, for fear that nobody will understand. Yeah I’m great dating material, I’m sure their mother would be thrilled if they brought someone like me home, not. Maybe I’m just destined to be alone. The thing is I’m actually a really nice person but people can’t seem to see past my illness and how it affects me. I really hope there is someone out there who one day might see past my illness, but I’m not going to hold my breath about it.

Side note: I’m a bit stressed about tomorrow, so much so I had a bit of a panic dream last night that I got all the way to London tomorrow and realised I had forgotten my stimulator remote, rendering the majority of my appointment with my Neuro useless. I then woke up thinking it was Thursday and I had slept through Wednesday and completely missed my appointment. Thankfully I realised it was Tuesday after checking my phone and I have put my remote in my bag already, so to not forget it tomorrow. Will let you know how the appointment goes, I’m hoping I get some answers as to why I’m in so much extra pain and what can be done about it.