A very long awaited update – having major surgery soon.

I’ve been meaning to write this for quite some time, I’m really not very good at keeping up with this whole posting frequently thing anymore it seems – but was I ever?! To say a lot has happened since I was in hospital under my GI doctor in June is an understatement, and a very long story. From discharge on the nutritional drinks I continued to go downhill, loosing weight rapidly symptoms just worsening and not able to tolerate more than 800 calories of the drinks a day, and the amount I could tolerate of them was continually decreasing. Bed bound and needing a wheelchair for a combination of reasons in order to leave the house, which was generally only for doctors appointments. Constant abdominal pain, nausea and many other different unexplained pains and symptoms. By August I had lost 20kg since the beginning of April and was very underweight. However, in August I also found out what was wrong…

I have a couple of very rare vascular compression syndromes:
– Superior Mesenteric Artery Syndrome (SMAS), to simplify this is where the 3rd part of the duodenum (first part of the intestine) is compressed in-between the Superior Mesenteric Artery and the Abdominal Aorta. Which makes eating incredibly problematic as there is not much space for anything to get through your duodenum from your stomach.
– Nutcracker Syndrome – yes this is a real thing and yes this is actually its name. Nutcracker Syndrome is where your left renal vein is compressed in-between your SMA and Aorta. For me this has also caused Pelvic Congestion Syndrome due to the blood flow issues with having a compressed left renal vein. Both of these conditions cause me a significant amount of pain and problems too.

By September I just couldn’t keep going as I hadn’t been able to sustain myself nutritionally on the elemental drinks, I was continually losing weight and was down to only being able to do about 200-300 calories a day of them. I was admitted to hosptial under my GI again for him to try and stabilise me. I ended up having to have a nasojejunal tube feed put in, which actually ended up being a completely horrific experience of placing the tube. I ended up having to have it done in radiology rather than endoscopy which meant I was unable to have any sedation. It unfortunately was not a simple or quick procedure due to my compressed duodenum, it was incredibly painful and long, involving a lot of crying, my whole body shaking and passing out at the end. I was on the NJ tube for a week however I was not able to tolerate it, whilst feeding it caused me a significant increase of pain that was not bearable, and it was causing me a lot of tachycardia when on the feed too. I ended up having to be taken off and the only option was to put me on Total Parenteral Nutrition (TPN). TPN is IV nutrition which goes in through a central line (I have a PICC line), it completely bypasses the GI system, providing you with nutrition straight into your blood stream, the end of the catheter sits just outside the heart in the Superior Vena Cava. The fact that it means no nutrition is entering my GI system gives me relief from the increased amount of pain and symptoms I have when I have anything going in there.

We did some tests to confirm my diagnosis with another scan in order to send it to an experienced vascular surgeon. I met with the surgeon and really liked him, he was easy to talk to, understanding, I liked what he proposed and he had a sense of humour! He wanted me to have an angiogram and a venogram to assess things a bit further before discussing next steps. Not a pleasant test to have done, especially when you end up being able to feel the entire venogram happening inside of your abdomen – very painful and uncomfortable! Not to mention having to lie completely flat and still for 5 hours afterwards which is not Ehlers Danlos Syndrome friendly in the slightest, my unhappy and unstable joints were screaming at me in pain for the entire 5 hours begging me to move them.
The scan showed it all clearly and we went ahead with planning surgery to fix the SMAS and Nutcracker.

I’ve now been in hospital for the past 10 weeks on TPN waiting for surgery. Have had several complications including sepsis, and ongoing very abnormal haematology blood counts and liver enzymes through the roof. The last two being unrelated to the sepsis, and deemed incredibly odd to have happened for several different reasons. I had the lipids in the TPN reduced and switched to the old type as my liver enzymes at one stage went up to 37x the normal value. My haematology blood counts I ended up with thrombocytopenia and low WBC, RBC and Haemoglobin. Though platelets being the worst and were dropping each day, there is still no clear explanation for this, but it most likely is due to the TPN for some strange reason.

We have had to try and re-stabilise my PoTS prior to surgery to make sure I am safe enough for it with the anaesthetic and also post op. My PoTS has been getting progressively worse pretty much since I came off the medications that kept it stable, which was about a year and a half ago. Initially after coming off it wasn’t too hard to cope with, but things just started getting worse and worse to become in a really awful state. I’m back on two medications, which I was on previously, however they are not effective enough and I’ve got some very strange things going on with it all too, my PoTS professor did want me to get checked over by cardiology prior to surgery as well.
I have also had some incredibly weird things going on with my headache too, but don’t know what is going on with that and hopefully we can figure that out more once I have recovered from surgery for the compression syndromes.

Surgery is imminent, I am having two procedures in one operation. Vascular surgery to transpose my left renal vein and gastrojejunostomy for the SMAS to bypass the compressed section of the duodenum. Having surgery will hopefully allow me to eat again and relieve me of all the pain and symptoms that both these conditions cause. I have two very experienced surgeons and an incredibly supportive GI doctor and I feel completely comfortable with the plan. Just keeping my fingers crossed that it all goes smoothly and that I will be able to sustain myself nutritionally in order to go home, as I need to get off of TPN in order to go home from here. So fingers crossed I will be able to and will be home for Christmas!

It’s been a very long hospital stay, however I actually can’t believe it’s been 10 weeks. I’ve been incredibly lucky to not only be under some amazing doctors but to also have been looked after by the most incredible and lovely nurses I have ever met and I don’t think I will ever meet any as great as them all again! And despite pain and feeling really unwell, distraction in the form of incredible nurses to chat to, laugh and joke with has truly been the best medicine. I have managed to maintain being completely mentally stable, upbeat and positive – and I am very proud of myself for that.

Will write more about everything and my recent experiences once I’m able to after surgery.

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5 years ago…

5 year ago today (30th September – is actually the 1st October now as I publish, oops!)  I was rushed to the hospital after a very large overdose. I was done, couldn’t do it anymore, I didn’t want to live in pain for the rest of my life, I just wanted it all to be over. It was a large overdose and I had a lot of other medications in my system too as they were my regular meds. I don’t know how long it was between taking the meds and falling unconscious, but I don’t think it was long. Most of the rest is a complete blur, my family found me, I don’t know how soon after it happened but I was in a bad way. They didn’t want to wait for an ambulance as often ambulances there would take forever to turn up, so they carried me down the stairs and into the back of the car. My Dad ran every red light to get to the hospital as fast as possible, my mum was sat in the back slapping my face to try and keep me awake. All I remember is being slapped and me telling her a few times to ‘fuck off and let me die’ before slipping unconscious again. From here I don’t remember much more just a couple of brief flashes in and out of consciousness. My t-shirt being ripped open in A&E, a porter praying over me in the elevator, a catheter being inserted. They put a tube down my nose for activated charcoal but don’t remember that bit at all. I was unconscious in the ICU for quite a while before I finally came to late the next day I think and then I spent another full day in ICU before a night on a ward as well. Other than these few brief details I do not know what else occurred and I don’t bring it up with my family to ask about it. I don’t want them to have to remember it so vividly and live through it again in their mind.

It feels like that was a lifetime ago, that it was a different person. I’ve been in somewhat bad and suicidal places since, but nothing as severe as how suicidal I was before that attempt and haven’t had any plans since my attempt 5 years ago. Despite the continued pain and illness the past 5 years, I’m glad I survived and I don’t want to repeat that experience ever again. And yes there have been bad times since and lots of pain but I’ve had good times too, some happy times and time spent laughing. I like laughter and sarcasm and turning things into a joke, often this can actually help me cope. I have a great sense of humour and feel that if I didn’t have one, what would I have left? It’d be pretty god damn miserable if I couldn’t see the funny side to things and wasn’t able to laugh at myself and at things in life, which is how it has sometimes been in previous years.
I thought I may feel a bit weird or emotional today about it all, but actually I feel okay. I feel happy I’m still here and that luckily 5 years ago my attempt at taking my own life did not succeed.

Currently I feel very stable mental health wise to be honest. I did have a brief struggle earlier in the year with the whole failed ONS situation, but I’m doing much much better mentally now. Which was helped by changing back to my psychologist of 4 years after having a brief break where I had to see the headache psychologist after ONS surgery, which wasn’t right for me. I feel upbeat and positive, right now I feel like I’m fed up of being miserable as it doesn’t help. Which is a big achievement for me, especially given I’m actually very unwell at the moment. I’ve actually been in hospital the past 2 weeks. But despite the pain and being very sick I still feel positive, able to see the bright and funny side of things, to laugh and to joke. I’ve got an excellent team of doctors, I feel positive and optimistic about everything.  I will write more about it all soon, when everything is all sorted out. I’m in good spirits despite everything, which is pretty revolutionary for me.
However I really need to stop being in hospital on the 30th September. Three years out of the past 5 I have been,  last year was my ONS surgery – can you believe that was a year ago?! And now this year too, which is unrelated to my NDPH or my mental health.

 

P.S have majorly conquered my doctors appointment anxiety currently and am feeling very proud of myself about that.

 

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 🙂

 

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.

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 possible 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 any effects the past 8 sessions may have had because of another outside influence with different thoughts and ideas. What was the point in the past 8 sessions, because they’ve made me feel worse.

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.

 

The struggle of talking.

When I got sick 7 years ago I bottled up all my emotions for months, I didn’t feel that I had anyone to talk to and not only that but I didn’t know how to talk about what I was feeling. I had never been one to be open about my feelings, because one I never really had any emotional problems till I got sick and two in my family we were never really very open about feelings,it just wasn’t really in our nature.

So when I found myself in the school counsellors office 4 months after getting sick, the result was silence and an uncontrollable shaking of the legs because I was so petrified. I wanted to talk but I didn’t know how to and I thought that vocalising how I was feeling would make me feel weak and vulnerable. It took Jo weeks of persevering with me for me to be able to say anything. Jo taught me how to talk, she taught me it was okay to feel everything I was feeling about my illness. One of her suggestions for getting me to be open was to write down what I was feeling and bring it in to read out loud. Writing it down didn’t feel quite so scary and once I had started it was hard to stop, everything I was feeling just flowed out of me onto the paper. As you can see from this blog, I still write to this day and it is a main thing which helps me cope. After a while talking became easier, but I could only talk to one person, Jo. As the years went by I had to adapt and be able to talk to other people other than Jo, multiple doctors, other psychologists and psychiatrists, with time it became easier depending on the person.

I’ve just started with a new psychologist, he’s taking an approach I have never had before and I feel like I’ve forgotten how to talk. Sometimes I’m transported back to my first appointment with Jo where I didn’t want to say anything out of fear that I would be analysed, fear that what I was feeling wasn’t normal, fear that talking would make me feel weak and vulnerable. Despite feeling that way still sometimes I know that my feelings are valid, and that I’m not the only one with NDPH or any other chronic illness who feels this way about it. It’s nothing to do with the quality of my new psychologist it’s just the way my mind works and I guess I’m just not comfortable with him just yet.

I find the psychodynamic approach he is taking very hard going, it’s tough to look at my anxiety in detail and finding the reasons behind why I feel the way I do, the feelings behind the anxiety and the anger I have. I’m not sure about the approach, but I’m willing to give it a go. I’ve been in therapy for pretty much the last 7 years, and although talking about how I feel has been helpful beyond measure, I’ve never really got to the consistently stable place I crave so bad. So maybe starting with someone new and trying a new approach is exactly what I need to get out of this pit of depression I get stuck in all too often. Tomorrow I have another appointment with him, last weeks was slightly better than my first one so I’m hoping they will continue to improve as I get more comfortable with him and the approach.

I wish I knew…

I wish I had a path, or some direction but all I feel is lost and depressed. People tell me I need to be mindful and take one day at a time but how can I even do that when I don’t know where I’m going at all. It would be alright if I knew where my life was going or had something to work towards but I feel like I’m lost in the darkness and I don’t know how to find my way out.

People ask me what I am going to do this year but I really don’t know. I don’t know where my place in this world falls and I don’t know how to figure it out. I just don’t know. The problem is, I’m in pain and not the sort of pain that improves with medication to become manageable.  I have severe constant headache with no cure and never any relief. I struggle to get through a day let alone a year. My pain is not manageable and most of the time it’s severe, surgery only made it worse and gave me two headaches instead of just the one.

So when I’m asked what I’m going to do this year, first I feel ashamed to say well I really don’t know and second it just makes me feel depressed. Because no doubt it will be like every year, filled with pain and misery and only glimpses of stability, only distant dreams of the life I wish I had, the life I feel that my headache stole from me in 2010.

At the minute I just feel more lost than ever, everything I try to do never works out because of the pain. So I feel like I am resigned to doing ‘not a lot’ for god knows how long, forever? I am having a nightmare with the fact that surgery has made things worse and I really don’t know what to do anymore other than feel depressed. I wish someone had some answers for me because I sure don’t.

I wish with all my heart I was able to do something more than ‘not a lot’ this year  and I wish I knew what I should or could do with my life, but I really have no clue.
If you have any suggestions please fire them my way!

 

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.