Treatment plan.

Honestly, I’m quite new to this whole way of thinking, it’s pretty exciting but on the other hand scary and it is early days, but I have a friend who has turned her spoonie life round MASSIVELY through alternative therapy. Whilst I was at an appointment this week I managed to halve my pain, it might have only lasted for about an hour but that is the biggest relief I have had so far from anything! It might not be for everyone and many people are dismissive of it, and I do understand why, but I haven’t got anywhere with hospitals, doctors visits and medication changes. I come out of my 10 minute appointments in tears because I know I can’t go on like this, just keep trialling drugs and having no relief from the pain. The consultant shrugging their shoulders isn’t helpful. But now I have had a couple of appointments with a nutritionist and started having acupuncture I have found that both have made me feel positive. Like really, really positive! My consultations for both have lasted a couple of hours and the practitioners have taken an in depth look at so many things, you can’t understand why on earth they are asking some of the stuff they ask, but most importantly they have listened and understood that my life CANNOT go on like it is.

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What I have decided to do is really quite complicated. Nutrition wise my first stop is some functional tests, they look at an unbelievable amount of things (vitamin deficiency, neurotransmitters, fatty acids, cellular energy, food allergies, toxic elements, oxidative stress etc etc). Apparently bad levels of these things can do crazy things to the body. I’m hoping the tests will show if there are any areas that I can work on rather than trying to do things by chance, but my nutritionist refuses to believe that a condition does not have an underlying cause, even if the underlying cause is different from person to person there is always going to be some reason why.

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Acupuncture wise, apparently things aren’t straightforward and from my past medical history it sounds like there could be what Chinese medicine calls pathogens in my body that have been there for years due to having lots and lots of infections. My acupuncturist described it as a tree, I have chronic migraines on one branch and the extreme fatigue and weakness on the other branch and what she is doing now is attacking the root of the tree. Once the problem with the roots has been dealt with, the branches might resolve themselves or normal acupuncture might be able to treat my migraines if they still exist but in her eyes there is a much bigger picture than just chronic migraine.

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I have decided to take control of my situation, and even if the benefits don’t prove to be groundbreaking I no longer want to have my health dictated to me by doctors who have little idea of what this is doing to me and how my life has changed. I am not under any illusion that my health is going to go from really shitty to perfect with the wave of a magic wand, but I do believe that what I am doing is going to help get me on the right path over time, so I can once again start making the most of my life, be successful, spend time with the people I love and go on adventures in my new little car with Tilly again.

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L xxxx

(ps. this is all whilst taking my preventative medication of course)

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Hello again.

I hope you are all as okay as can be expected… I have been pretty quiet for quite some time now but I am back with enthusiasm and determination and am hoping to make posting a regular-ish thing, migraine permitting of course!

I got really busy, apparently I thought regardless of the fact I had a chronic illness that I could turn into superwoman. STUPID. I was kind of tolerating it and my body wasn’t giving me too many warnings so I kept pushing and pushing. I even bought myself my dream car amongst all my excitement – okay, it’s not a Bentley but it doesn’t fall far behind in my eyes haha! Then one day, it hit me and I got REALLY, REALLY ill. So life came to a halt. I mean being housebound, using a wheelchair, unable to work, unable to graduate on time, unable to walk around the house easily, unable to live on my own, walk my dog, drive my lovely car kind of ill and have been like this since February. I also have this utter exhaustion that is swamping my body making me ache and weak, it isn’t just tiredness it is completely different. So with all that came this MASSIVE wave of negativity and I didn’t want to keep moaning and put my problems on other people.

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I pretty much pinned all my hopes and dreams on my Neurology appointment, again STUPID. I was basically told I was unlucky migraine wise, that this overwhelming fatigue wasn’t normal but there wasn’t anything that could be done, I just needed to wait and see. I don’t want anything additional to be wrong with me but it would be helpful to be given some idea as to why my whole body feels like it has flu and is so weak and why no amount of rest is fixing it.

So this is where my post becomes positive… after all the tears and feeling like I was never going to live a normal life again, I found hope!! This hope is in the form of alternative therapies and I will fill you in on this in my next post but the main point of this is that instead of getting bogged down wondering why me, why won’t it go away or why is no one helping me like I had been doing, I now feel hopeful that I can do things to help make tiny little steps to somewhere that is a much better place than I am at currently.

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I’m so grateful to those who have been there, continuously supporting me. When you are stuck in the house day in day out, unable to go anywhere it is the little visits, texts and cards in the post that make your day and remind you that you aren’t on your own. Today some beautiful Bloom & Wild flowers came in the post from my sister and best friend Sophie, they really put a smile on my face.

I’ve also been lucky enough to have Tilly hanging round for cuddle time day in, day out which I suppose is a bit of a bonus of being ill…

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L xxxx

My Story.

Hello,

Now that my exams are out of the way, I thought I would share my journey with Chronic Migraine. It is relatively short really as I haven’t been diagnosed for long, and having read others posts and heard their stories, I think I can consider myself quite lucky so far. I apologise in advance that this is realllllly long and probably pretty boring, but as I’ve said before my blog is a place for me to get everything out.

This all started in summer 2012 around the Queen’s Diamond Jubilee weekend, I was having a year out before starting University in September and after being sent to A&E the on call opthalmologist said that I had Ptosis (or drooping of the upper eyelid) and asked me to attend the eye clinic at the hospital the next week. I went along to my appointment the following week, expecting it to be a quick in and out as my eye lid had near enough gone back to normal, but the consultant was concerned with my Optic Disks/Nerve and I ended up having to stay and have lots of tests and an MRI. Everything was normal, but they were still worried about the abnormalities at the back of my eye and so referred me to see a neurologist. By the time my appointment came I was suffering from the headaches most days, he arranged for me to have a lumber puncture. The lumber puncture was horrendous, I still had the headaches and now I could hardly walk from back pain, I was off work for a couple of weeks but then started to get used to the headaches and returned to work. I saw the neurologist again and he started me on Nortriptyline which I started taking and gradually increased the dose so that I was taking 50mg by the beginning of October 2012. Between then and this summer, the Nortriptyline was great, apart from the occasional weeks were I would have a bad migraine and be bed bound, everything was fine and I could carry on with day to day life and enjoy my time at University.

Then came this summer and my headaches were starting to get worse again. They weren’t as frequent or as intense as they had been before the Nortriptyline, but the medication was definitely not working as well as it had been. I tried to get an appointment with the GP but they would only let me have a phone consultation, the GP dismissed that it was the same type of headache, insisting that I must be stressed and need to try exercise and if it was no better in three weeks to ring back. So I tried waiting three weeks, I didn’t want to be impatient but the headaches were getting even worse and I now had them more often than I didn’t have them. Then, the Monday after Halloween I woke up with the worst headache I had ever experienced and the Ptosis, I went straight to the doctors and explained but they said it was probably stress and reluctantly increased my betablocker (which I had been taking since March 2013 due to a fast heart rate). He said I should go back in a week, so back I went the following week feeling exactly the same and having spent the weekend in bed and off both university and work. This time they put me on a low dose of Propanolol, again saying that it was all due to stress and anxiety, this time they told me to see a counsellor at university. I was furious, I was not stressed nor anxious but I was in a lot of pain and they were ignoring me. I went back again, they said I had to wait another week. I still felt exactly the same, it was so bad I was considering dropping my dissertation and went into University to arrange to go home for a couple of weeks. After another week, my mum drove me back to the GP from home and explained that I could not go on like this, this GP that I saw was sympathetic and more understanding and said she would be happy to refer me to a neurologist again. In the mean time prescribed me a steroid spray in case I had a sinus infection as the pain is mainly around my sinuses, eyes and side of my head. Luckily, I was covered on my mums private health plan and I was able to see a private neurologist who specialised in headache and migraine the following week. He was really helpful, understanding and knowledgeable and diagnosed me with Chronic Daily Migraine. He took me off the Nortriptyline as he expected that was the cause of my fast heart rate and kept me on the Propanolol, increasing my dose and said I should increase it to a maximum of 240mg if I wasn’t seeing an effect. Going home from the appointment I cried my eyes out, I couldn’t believe there was nothing he could do to take the pain away there and then and didn’t know how I was going to continue to manage the pain. After getting the diagnosis, I slowly started trying to do more as until then I had spent the majority of my time in bed. I knew that I couldn’t carry on like this forever and so I kept pushing myself as I had a lot of coursework due in, I was now beginning to get used to feeling like crap. Luckily, I only had a few weeks left before I broke up for Christmas and this was the only thing getting me through the days.

So where am I now? I came back to University yesterday, I know it is going to be tough but I just need one last push to get me through the semester so I can graduate. I am eating both gluten free and only things that are natural. I have seen a nutritional therapist who has put me on an array of vitamins and supplements. The pain is no different from when it started and I am now on the 240mg dose of Propanolol. I am going to see my GP in two weeks time when I will have been on the medication for three months. I’ve had the worst few months of my life, and that’s saying something considering my parents split up when I was fourteen. I am in constant pain and there isn’t a second of the day or night that I don’t have a headache, it has been continuous since the end of October and isn’t improving in the slightest. I am just teaching myself how to get used to the pain and get on with life. I work on the checkouts in a supermarket and can’t even go on a checkout for longer than half an hour anymore, I was made to go on for two hours a couple of weeks ago and had to go home as I felt like I was going to be sick, was dizzy, had drooping eye lids and the pain was unbearable, I’m not sure how I got home but I was in bed for two days afterwards. I now have to spend both of my two eight hour shifts on the self service checkouts just standing there, it sucks the life out of me, as well as making me feel like a nuisance and that I can’t even do my job properly anymore.

The hardest part is that people do not understand that the pain never goes away. I used to sleep great and get about nine or ten hours sleep a night, but now I wake up during the night from the pain and often cannot sleep at all. Nobody at work understands why I can’t do the same job that I used to do and though on the most part University have been really good about everything, my dissertation supervisor doesn’t understand why a) I am really behind, b) why I can’t catch up quickly and c) that I am not being lazy. I couldn’t wait to do my dissertation, it was optional but I was so motivated. Now I am so behind and doubt I will get a very good mark because I can’t dedicate the time to it that I need to and I struggle to spend very long sat on a computer (which when you are doing a dissertation in the field of sociolinguistics is pretty necessary). People don’t understand why I have had the occasional night out, shopping trip and meal out since becoming ill and the other set of people don’t understand why I cannot go out with them every week. I feel like I am trying to fight a losing battle and that no one is happy with what I do. I don’t ever feel like doing anything other than staying in bed, but nothing changes how I feel so why should I not go out and have a few drinks once a month? If I have to push myself to go to university and work I don’t see the difference between pushing myself to go out somewhere too. I don’t want to lose all of my friends as well as be in constant pain, and if it makes me feel no worse then the way I see it is that I am not harming anyone.

If I didn’t still get to see my friends every so often I can’t imagine how much lower I would feel. I am a brave person, someone who just gets on with everything without speaking to anyone about it and just dealing with the emotions myself. Everything gets bottled up and I am usually ok but Chronic Migraine is really starting to rock the boat. I feel so useless and pointless and cannot adjust to the fact that my life cannot be the same anymore. I can’t accept that it is now the norm for me to have to nap every day just so that I can get through the days, that I can’t do the same job I did before, that I won’t be able to get a 1st in my degree like I thought I might be able to and that I’m not sure what jobs I can even consider applying for when I graduate because I don’t know if I am well enough to. In September I had wrote a list of all the graduate schemes I wanted to apply for but after getting ill, I have ended up missing all the deadlines as I’ve had other stuff going on. I have always had a part time job and been self-sufficient, I go home from University at weekends so that I can carry on the job I had before, I do volunteer work, yet I feel that when this summer comes I am going to feel like I have wasted everything I have tried hard for just because I cannot function as I used to.

All this said, there is quite a while before I graduate and I hope they might find a medication that works for me by then. It may not seem it but I am trying to remain positive. Like I said at the beginning, I know that I am lucky not to have too many side effects to my tablets or symptoms other than the continuous pain.

L xxxx

Welcome.

Hey lovely people!

I’m Laura, a 22 year old from Lancashire. I’m currently in my final year studying English Language at University of Manchester. I’m what I would describe as your average 20 something girl, without the patience for experimenting with new make up and hair styles each week. I like to spend most of my life in my pjs, browsing instagram and hanging out with my friends and family.

I have been considering doing a blog for a while now and today, I have been feeling quite low and decided that this is the perfect time to make it (soz exam revision)! My main motivation for blogging is to help myself find comfort with the condition I have been diagnosed with, if I can share my feelings and my daily experiences with Chronic Migraine then hopefully I can find others who are going through the same thing and begin to feel like I am not alone in this. I’m not good at talking so really I see having this as a way of getting everything out.

I am trying to refuse to let migraine rule my life and I don’t intend to focus my blog solely on it. I love anything food related, restaurants, cooking, grocery shopping… the list goes on. So prepare yourselves to be bombarded with what I have been eating! I am trying to go gluten free at the moment and cut out everything artificial from my diet, so no doubt I will be letting you know how that goes. I also like clothes, travel, reading (when I can) and pretty much anything Cath Kidston or shabby chic related. My family and friends are my everything. Oh and you will probs also see quite a few pictures of my baby sis, Tilly the Cavachon.

I’m not sure anyone will even read this, but here goes! If you do read this, THANK YOU please feel free to say hi!!!!

L xxxx

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