This photo came up on my Facebook feed today and made me think back to a couple of conversations I’ve had with friends over the phone or internet about how far I’ve come on this journey and what I have learned that I can pass on to others.
So I am going to attempt a post to help you if you suffer from iih headaches, migraines or headaches in any form or maybe even if you suffer from other chronic illnesses. Of course, I am not medically trained and you must check with your physician before attempting anything I suggest as even herbs can interfere with prescribed medications. I’m not preaching and I’m not telling you to not bother with treatments that haven’t helped me. I’ve tried nearly everything out there (in the UK) in the past 6 years and some have worked once, some have made me worse and some have helped dramatically. All I can do is tell you what has helped me. You will need to find your own way to healing and I wish you the very best with that, whatever works for you. Please let me know in the comments (box at top of post) what has worked for you!
So firstly, a quick reminder that I’ve been suffering with daily headaches for 6 years, mostly at a level 2-3 on the pain scale so I learnt to ignore them and had strategies (which we’ll come to) that I used to gain back control when the pain levels rose. However, this all changed in January 2014 and since then I have lived with head aches mostly at a 7+ until September 2014 when I lost mobility and the pain increased to being a daily 8-9 on the pain scale with a few 10s and 10 pluses thrown in for good measure! I’ve been virtually housebound since then and that has meant that many of my coping/alternative strategies have had to stop or be vastly modified to adapt to my new way of life.
Now for the therapies, diets and supplements bit; below is a list of all that I have tried so far. I will go on to talk about some of my encounters with them; good and bad. I’m not here to tell you what will work for you; I’m here to make you laugh and to spread awareness. I am already getting messages from people who have recently started suffering with headaches and migraines (they are NOT the same thing) asking for advice because of this blog, and I am always happy to give anecdotal advice. I can’t take any responsibility for anything you try and as I have previously warned many things interfere with prescription medication. I am not going to discuss prescribed medication here and I am not going to give warnings about specific contraindications, so please find that out for yourself BEFORE trying anything!
The other thing I want to warn you about is falling in to the trap of trying everything that people recommend. I got so desperate at one point that I asked for ideas on Facebook from friends and acquaintances.I’d tried most things suggested but my favourite was to go and sit on Glastonbury Tor and ask for peace! There were a few new ideas, such as this:
but I only tried one or two because I was in the middle of changing prescribed drugs. If you add too many things into the mix; how are you going to know what is working? You need to go about this in a scientific way as much as you can. If you’ve just been prescribed a new preventative, for example, you may need to wait a month or so to see if that has any impact before you try something new. Similarly, I would recommend that you only try one new therapy at a time and give it a few tries before making a decision. The therapy that has helped me the most, actually made me feel much worse after the first treatment but I bravely went back and we worked out what had gone wrong and that treatment is what kept me in work for 5 years despite daily headaches! All I’m saying is, try something new; it might be THE thing for you and your life!
Here is the list of everything I can remember trying:
*coloured lenses in glasses
*dentist visit/X-ray to check bite
*omega 3 oils
*anti-candida diet (a specific type of extreme detox diet designed to get rid of bacteria in the gut)
*dairy free diet
*alcohol free diet
*indian head massage
*wheat bag heat packs
*supplements such as magnesium, zinc, vitamin b, c, d and others that I wouldn’t be able to spell even if I could remember!
*wheat free diet
*ice hats (migracaps)
*ginger and peppermint tea (bags and water with leaves or slices of raw ginger)
*meditation and mindfulness
*tinted glasses, gig earplugs and sea-bands
So, I’m sitting here now trying to remember if that is everything, but I guess that is a pretty comprehensive list! There are quite a few in there which I decided after a few treatments or a few months that it wasn’t the treatment for me such as; bio-mechanical healing and reflexology (in one session), which hurt during treatment even though she didn’t really even touch me (it’s a bit like reiki) and made me feel so sick and dizzy afterwards that although I gave it another chance, it just wasn’t for me! I had some initial success with chiropractic treatments as I had already had them for my back, due to working with dinky people and carrying a massive baby during and after pregnancy. My chiropractor also tried acupuncture, with me even putting up with needles in my face, but that made me so much worse!
He was a good chiropractor and eventually said that he could do no more for me and sent me to see a kinesiologist! What is that? I hear you say. Well, that’s too much to explain: http://www.kinesiology.co.uk/info.php Here I had found the first of many therapies that have really helped me. I am so lucky that when this lady felt she had done all she could, she passed me on to another practitioner who was also a qualified cranial osteopath. I am still being treated by this awesome lady, although less than I’d like now due to lack of income, and her treatments are what has kept me at a level I was able to work at for so long. I feel so grateful to have found someone that treats every patient with such care and kindness; listens so carefully (she knows to hardly touch me); gives clear information about everything she does and teaches about the Upledger style of treatment and how to melt away the pain.
She has taught me to listen to my inner physician and I am now able to try and treat myself to a point at home. She told me that she felt that my problem was to do with the dura, and even tried filming my crazy blood flow through my right jugular vein, months before any of the surgeons found anything wrong with me, and you know what a fight THAT has been! I can’t believe that she was able to pick up that there was a problem linked to something to do with csf fluid and also that it was having some kind of effect on restricted blood flow. I haven’t seen her since I’ve lost my mobility, as I can’t drive to see her and I have not had any money coming in, although she knows about my diagnosis of restricted venous outflow causing probable iih, but I am hoping to see her and tell her she was right all along. The dura is “The outermost, toughest, and most fibrous of the three membranes (meninges) covering the brain and the spinal cord.” I really cannot wait to go back to her armed with all the details!
When I joined Mission Migraine, not only did I gain the most wonderful set of new friends that I mention in every post; but also a wealth of access to information. Things to try to avoid migraine; what alternative treatments to use during; information about migraine itself and knowledge of the different types of migraine. I didn’t even know before I joined that there was a type of migraine that had stroke like symptoms (hemiplegic migraine), let alone that one of my friends had not long been diagnosed with it. But, the most shocking thing of all came when I discovered that some of my new friends had such severe attacks that they had lost their balance centres and had to use a wheelchair! Within days of joining I discovered that lots of people in the group seemed to wear strange hats! The great discovery of the migracap! It’s almost like a badge of respect and a migracap selfie is obligatory. If you had one you were part of the gang, so why not? Little did I know that this hat would become my best attack for the pain and that I would need one before I could get out of bed, let alone that I’d end up with 2 so I could have one almost constantly and that my friends would soon learn to not even bat an eyelid when they saw me wearing it! I cannot recommend these highly enough. They help every type of headache I get; not just migraines. The only time they haven’t helped was with a post lumbar puncture headache.
I started using essential oils again; mainly in a bath or in an oil burner. My favourite headache oils are. Jasmine, Lavender, Clary sage and peppermint. I also use ginger and peppermint for nausea. Ginger for muscle soreness, myrrh for healing and frankincense for aiding meditation.
The different diets I’ve had have all helped at the time and were all decided on due to the kinesiology testing. I’m still wheat free a year later and I’m no better but I do feel healthy! I know that sounds mad but if I wasn’t in pain I’d be really well. I eat a great diet, with limited refined sugar (most days) and lots of super foods and I take supplements at the strongest strengths you can buy in the EU. I would be practicing yoga and Pilates every day and I would definitely be able to fit into all my clothes that are hanging in my wardrobe waiting for me to get moving again and lose the excess weight the lack of movement and medication has contributed to. Although, I can’t blame it all on that, I eat lots of chocolate when I’m sad too! 😢😢🍫🍫
I still do pelvic tilts and wrist and ankle circles daily, whatever the pain level, and I get up and move every hour I’m awake. If I’m having a good day I might manage a bridge or two and even a few teasers on my bed. It’s going to to take me a while to get back to it but as soon as I can I will!
However, the most amazing thing that has come out of meeting my mission migraine friends is the power of meditation. I started small. Just a bit every few days. Then I started my yoga class and we meditated at the end of every session and I realised how much better I always felt: more energised; less tired; lower pain levels; feelings of happiness, calm and gratitude. Pretty soon this became something to do every morning when I wake up. I often now fall asleep again afterwards but I still do it even if I only listen for 5 minutes before I fall asleep. I listen to relaxation music and some carefully selected binaural beats at nighttime when I go to bed and if I can’t sleep during the night. I am a much calmer person for doing this and it is teaching me mindfulness too!
As I meditated the other morning I suddenly felt the need for another reiki session. I’ve had 2 in the past year and have loved them but they have drained me completely afterwards. I haven’t been to yoga class since September either. I rang the practitioner who is also my yoga teacher, and she said she’d just been thinking of me! Anyway; I have a treatment booked for Friday afternoon. My awesome friend can take me and we’ll deal with the stairs bit (to her treatment room) when we get there….oops!! I will let you know how I feel after my treatment: I am hoping that it sets me up ready for dealing with my journey to Somerset just 2 days afterwards to meet the best thing that has come out of being unwell; my new little sis whom I speak to daily but have not yet met! I will have so much to tell you all about! But I shall leave you with this to make you smile for the rest of your day!