It’s the never ending headache’s 4 year anniversary!

I got a notification today telling me it’s my blogs 4 year anniversary. It’s crazy to think that it’s been 4 year since I started writing on here. I’d been writing similar for a couple of years before but on Tumblr under the same sort of url, but closed it down and started out on here properly.

My reason for starting writing was to help me cope with the challenges of living with this headache, to give me an outlet because I’m not very capable of voicing my feelings to anyone. I needed a safe place where I felt able to express how this condition makes me feel somewhere other than the once a week session in a psychologists office. It has always and still does make me feel so much lighter once I have written down and shared how I feel; it’s very therapeutic! I’d really recommend blogging/writing to everyone, especially if like me you tend to bottle things up and have difficulty expressing and sharing your emotions with people.
My blog has always remained very private to me, as in I don’t tell people who I know in real life and see all the time about it. Most of my friends and family don’t know it exists and the couple that do respect my privacy enough and how I feel about not wanting to share it with them. I just simply wouldn’t feel comfortable being as honest if I knew family and friends were reading and knew everything I write on here.

I know this blog isn’t often too positive or hopeful and in some ways I’m sorry about that, I wish I could be more of that for you all. But I’m not going to lie and tell you that living with this condition isn’t hard or it’s easy just to get on with it, suck it up and continue with your life as if you didn’t have a headache. Because that’s not possible for me and not for a lot of people with NDPH, that being said a lot of people do work and study. Most of us just try to get on the best we can, whatever that may look like or our situation may be. I pride myself of this being a personal honest account of how this condition affects my life, the problems it causes and how it makes me feel. And I hope that is okay.

When I started this I never thought that many people would be interested in reading about my life and the issues I have faced and still currently face with my headache, turns out that quite a lot of people do. To those of you that read my blog and have ndph or a different headache/migraine condition, I hope that somehow knowing that you’re not alone in this or how this may make you feel is of some small comfort.
To everyone those that always comment and are rooting for me, thank you means a lot!
And finally to all the lovely people who have emailed me since I put a contact email on here. It’s been really nice chatting to each of you, I hope that sharing experiences, helping each other feel slightly less alone, and chatting about random stuff in our lives as a distraction helps you guys as much as it helps me.
If you haven’t emailed me but would like to talk to someone who gets it, share experiences etc, feel free to send me an email as I’d love to hear from you.
iamtheneverendingheadache@gmail.com

Thanks for all the support over the past 4 years, I’ll keep writing 🙂

 

Stimulator removal agreed!

I’m a very grateful to have a neurologist and his team who are incredibly supportive and who I genuinely believe care (as believe me not all the ones I’ve seen are like that in the slightest), they have tried very hard to help me since I started seeing my neuro back in 2011. Unfortunately all attempts have not worked out, my headache being unresponsive and resistant to all treatment; and as you know this latest one has caused me more pain (turns out my brain is weird but I think I already knew that anyway!). In April I wrote a post entitled ‘what I wish I could tell my neurologist tomorrow’, at the time when I saw him I wasn’t quite able to tell him much of what I wanted to and chickened out of showing him the post as well. However a week or so later I built up the courage to send it to him.
Last week I had a surprise appointment, it had been booked in ages ago and I had been aware of it however I thought it had been cancelled and was expecting to be seen in July instead. After ringing up to see about a July appointment they said to come to this one instead. I then ended up in my local hospital Monday-Tuesday but luckily managed to make my appointment on the Wednesday, before being admitted to a different hospital in London that afternoon under the neuro-gastroenterologist I’m seeing.

My appointment went well and I felt very supported by my neurologist and his team, we had a long discussion about a number of things. The main being my stimulator, my neuro said that if having my stimulator removed is what I want then that is more than okay and he will arrange it. We discussed some issues surrounding that but I still said that I would like it removed, so they should hopefully be placing me on the neurosurgeons waiting list and it will be a 2-3 month wait for surgery roughly. I asked whether removal would alleviate the extra headache in the back of my head or whether I am stuck with that now, he said that it should hopefully resolve with removal of the stimulator. We discussed some future treatments that are hopefully in the pipeline in a couple of years time, and my ongoing other health issues.

I left with a mixture of feelings – grateful that I had felt heard and supported by them which isn’t out of the norm. I also felt a mixture of happiness and relief but also heartbreak and depression. I feel happy and relieved that it won’t be long before I am hopefully rid of this stupid device inside my head, that has caused me so much pain and still continues to. But on the other hand I feel heartbroken and devastated it has come to this. This was meant to be my answer, my last resort, but it has failed and now I’m not sure what to do or how to move forward.

Have a lot going on at the minute health wise which is making my head spin a lot. But knowing that my stimulator will be removed in the near future, which may hopefully relieve the extra pain in the back of my head, is quite a relief and gives me one less thing to worry about.

 

What I wish I could tell my neurologist tomorrow…

I’m not good at expressing myself to people in person, I’m never able to say what I want to or need to. I’m much better at writing it down, what I want to say and how I feel. I’m seeing my neurologist tomorrow and this is what I wish I was able to tell him…

I don’t want you to think I haven’t given this enough of a chance or that I haven’t tried hard enough with it. I wasn’t expecting any sort of relief yet when I only had surgery 7 months ago, but I’m so much worse it’s unbearable and I know it should not be this way. I can feel that my pain/head/brain does not like what is happening to it when the stimulator is on, I can feel it and it’s even more agony than I’ve been use to for the past 7 years. And if that wasn’t bad enough an extra headache has been created at the back of my head, which was never there before and I don’t understand what has happened for it to be there, but it’s really very painful and I just wish it would go away. I wish I never had the surgery,  I wish I had listened to the people who said not to go through with it. However I’m the type of person who will try anything within reason if there is the slightest possibility it could result in some relief, and I know if I had not gone through with it I would always be wondering if this could have been my answer.
I don’t often complain to you Manjit, I don’t often complain to anyone, I usually hide my pain with a brave face, a fake smile, a laugh or a sarcastic comment, mainly because I don’t want anyone to see just how badly I feel and just how much pain I’m actually in. But this is me complaining, when the stimulator is on it causes me so much agony it’s becoming unbearable. And I’ll be completely honest, I don’t want you to turn it back on and reprogram me which will probably send me back into even more agony, I want you to keep it turned off and then swiftly arrange for removal. I’m in agony and I don’t know what more to ask for other than this and hope that I can return to what it was like before surgery, which was also agony but it wasn’t quite as bad as this. I know you’ve tried so hard to help me and I appreciate everything you have done to try and help me over the past 6 years I have known you, I appreciate it more than you know, you were the only neurologist I have ever seen that didn’t dismiss my pain, that listened to me, that cared enough to want to help and for that I will always be grateful. But I’m not sure I can keep going with this stimulator and how much extra pain it is causing me, I’m completely fed up and done with it and I honestly don’t believe that reprogramming it any different is going to change the extra pain it causes me when it’s on, I know my pain better than anyone, I know what it does not like and it does not like this, I wish so badly it did and I wish this could have been my answer for some relief, but I really don’t think it is.

I know everyone was worried about what would happen to me if surgery turned out not to help and where I would be mentally if that was the case. I wish I could tell you I was okay, or that I will be okay. But the truth is I’m not okay, I’m so very far from okay, I’m completely heartbroken and devastated about this and completely unsure of how I’m even going to be able to move forward from here, of how I’m going to cope with the rest of my life with this pain. I’m probably in one of the worst states I’ve been in and I’m probably beyond anyones help anymore. I’m 23 years old it’s been over 7 years since this started and I have no clue how on earth I’m going to survive the rest of my life with this pain, I don’t know how to deal with the fact I will probably never have any sort of relief, that all hope for that is gone. And I feel that if all I’m ever going to be is sick and in pain, then what really is the point anymore? 

I know I won’t be able to say this to you tomorrow, I’m not even sure I have the courage to show you this post, but maybe I will surprise myself.

 

Heartbroken.

I’ve been a bit quiet on here again recently, writers block would be the wrong word. It’s more like I’m actually really struggling and I haven’t been sure how to express it to anyone, even on here.

My pain levels are still worse since my stimulator was turned on a few weeks ago, my 2nd extra headache is still raging and I’ve resigned myself to the fact that I really don’t think my brain likes what is happening to it. I feel completely and utterly devastated and I really do not know what to do anymore. I was hesitant to call my neurologists team because I didn’t want them to think that I haven’t tried hard enough, that I’m just giving up. When really I’m in agony, I obviously wanted this to help more than anyone and I’m heartbroken that it has been a complete disaster and I’m worried I am now going to be stuck worse. I did however call my team and spoke to one of my nurses, telling her it was worse again and how I wished they would take the stimulator out. She asked if I had told my neuro that and I said not yet but I would be telling him when I see him in 2 weeks time. She said she would talk to him this week and said she would call me with what he says, so hopefully I will hear something tomorrow.

I’m really struggling with the failure of this treatment which was a last resort and the complete and utter heartbreak it is causing me. The overwhelming fear of spending the rest of my life in agony, the sadness I feel that I will never be able to move forward with my life, that all I will ever be is sick and in pain. And I honestly don’t know how to let myself feel the grief that I know is there.

I’m really at a loss of what to do and how I could even hope to move forward from here because I really don’t think it’s possible.

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.