Chronic pain - can't cope with it any longer.

[WhereTheMellowThingsAre]

I just need somewhere to vent and get it all out as I'm feeling so alone and completely sick of everything.
I suffer with chronic migraines and have done since I was 14. I'm 28 now so it's been going on for a while. Since I had my son 4 years ago my migraines have gotten so much worse and have reached a whole new level. I'm sure its to do with my lifestyle change. Before my son I managed the migraines without any medication. I ate very healthily, was a healthy weight and probably got one migraine or two a month which I would be able to sleep off. Before I made this healthy lifestyle change I would have frequent migraines, probably one a week.

Now that I've had my son, my lifestyle has become really unhealthy again and I'm trapped in a cycle of not being able to change it. I'm trying so hard and have been for the last 2 years but I just can't make any sustainable changes. My migraines now come about 3 or 4 days out of the week and they are excruciating. I can no longer sleep them off, they last for days. I have become dependant on taking triptans to stop the migraines which I suspect has caught me in a cycle of medication overuse.
I have been on 3 different preventitive medications all of which have not worked. The last one I was on was Topiramate and I had to come off it completely as the side effects were awful and messed with my mental state. I'm now not taking any preventitive.
The reason I struggle to change my lifestyle so much is because my son has ASD. I had to give up my job 2 years ago to become his carer. Every day is horribly stressful and difficult which leads to me binge eating my feelings on junk food. My son doesn't sleep at night so I am constantly tired so have developed a coffee addiction which also fuels the migraines.
Lately its all been so bad that I spend 60% of the day lying in bed or on the sofa completely debilitated by a migraine. My poor son has to put up with this so often and I feel so awful for him. He has his owm difficulties and on top of that he has a mum with chronic pain who is basically useless.
I feel completely hopeless, like I will never be able to change my lifestyle and get out of this hole.
Today I tried to start a diet and cut out caffeine and sugars and junk and by midday I had a horrendous migraine which left me in bed for the rest of the day.
I have spoken to my GP about possible medication overuse headaches but GP doesn't seem to think thats a thing.
I don't know what I expect from this post, I'm just feeling so low and fed up of life and just wanted some where to let it all out.

Op this sounds so difficult for you! Im wondering if there is any help that you can get. I’ve heard the NHS has specialist migraine centres, could your GP refer you to one of these to help you? Or perhaps a pain service? You’re doing so well managing all this on your own, but sounds like you need some support to lighten your load. Do you have any family or friends nearby who could help out (in normal times)?

www.nhs.uk/Service-Search/other-services/Headache%20and%20migraine/LocationSearch/54
Could this help maybe?

@TangerineGreen Thank you for replying. There are migraine centres but my GP says I need to try so many preventives until they will refer. I only have my mum left but she lives over 50 minutes away and works full time so I don't get to see her often. Other than that there isn't any other help. It's very difficult and I'm so tired of being in pain all the time and feeling unwell.

Ok, if the pain continues to dominate, I would consider pushing again with GP or asking for another GP, it sounds like you are really suffering here.
You’ve so much on your plate, need to start small again with something manageable.... the caffeine sounds like a good place to start again... did you go cold Turkey before? Would it be possible to wean off a bit more slowly?
How about a bit of self love? What have you enjoyed in the past or feel like trying now? Bit of gentle yoga on you tube when you feel up to it? Re-read a book you loved? Could you bubble with your mum so she could take your son for a while and give you a break?
Keep going OP, things will get better

Hi OP. Several migraines a week must be absolutely crippling. It's not easy to get into a regular routine when you're floored by migraines several times a week and kept up at night with childcare, but it's what you need. So eating meals at set times each day, going to bed at the same time etc. I don't think that's going to be possible without medical help so you need to develop a better relationship with your GP in order to get that referral, which you clearly need. If the GP feels there are other medications you need to try first, you may need to go along with that but make sure you get an agreement with your GP as to how long you need to give the medication a go before you can come back for a referral. Also, do explain again the reason you stopped taking the last medication was the side effects. If the GP can't find a medication that's effective without unpleasant side effects, they will have to refer you on, so keep going back until they do. In the meantime, all I can do is sympathise. Migraines with young children is hell. I'm lucky that I know and can mostly avoid my triggers. It sounds like you need more specialist help to identify and control yours. I hope you get some respite soon.

Poor you. Medication overuse headache definitely is a thing and I was told is one of the most common things seen at headache clinic.

I was strictly told no more than 2 triptans an episode, no more than 2 a week and no more than 6 in a month. And no topping up with other painkillers like paracetamol/codeine/ibuprofen to make up for the triptans as they would just cause overuse headache too.

I definitely had overuse headache and I can now spot it coming on really quickly, it's quite scary how a normal 2 day migraine can be prolonged by the medication I use to get rid of it.

My tips to you would be to try to be aware of your triggers and you may have loads: just off the top of my head I can think of fragrance, alcohol, caffeine - don't have to avoid it but have to have the same amount every day, staying up too late, but then also bizarrely getting up too late - migraine likes regular hours, being hungry, being thirsty, hormones - progesterone only pill was great for me, the weather OK you can't do anything about that one I work with 3 migraine sufferers and when there's a storm we're all off sick.

You don't need to start a diet but regular meals, regular hours, less sugar, do help a huge amount.

Hunger is such a huge trigger and then you eat a massive amount of sugary carbs to avoid the next migraine, and just coast from one to the next - I put on 3 stone this way.

Please keep pushing your GP for a referral - you absolutely need to be on a preventer and there will be something out there for you.

I’ve looked it up and the migraine trust uk have an advocate service, to help you gain access to the right support in the NHS. There’s a telephone number and email address there. I’m sure if you just cut and paste your original post they would be able to help you. Will keep everything crossed for you.
www.migrainetrust.org/living-with-migraine/asking-for-support/advocacy-service/

@TangerineGreen @Prestel @AnnaMagnani
Thank you all for your replies and advice. I really appreciate it.
I've spoken to my GP this morning and she has put in a referral to neurololigy but has said they have a very long waiting list so in the mean time she has prescribed a new preventitive medication to try. I mentioned again that I'm worried about medication overuse headaches and she still didn't sound like she thought it was that, she said its more common when taking coedine rather than triptans. She prescribed Naproxen to take instead of paracetamol and ibruprofen.
I've woken up with the headache still here today and its gradually getting worse

This may seem a bit out there, but have you thought about an osteopath?

Or shiatsu? They have both worked really well for DP and me, not for migraine, but other symptoms which you wouldn't even think of as treatable in these ways.
It must be really tough, I can't imagine how awful it must be for you.

Well done OP that’s a really good step to get the neurology referral. It may take a while but it’s still going to move a bit closer each day.
I think AnnaMagnani advice above was really good, trying to get a routine established and diet, small steps though and you’ll get there. Be kind to yourself OP this is really tough but you can do it

OP, it sounds like you are suffering from 'Status Migrainosus'.

www.healthline.com/health/migraine/status-migrainosus

I went through the same thing when I was 34: occasional migraines became chronic, until I was getting them almost every day, and often they would last several days at a time. I'd end up in A&E begging for pain relief (and not getting it). It completely devastated my life. I couldn't work, couldn't see friends, didn't enjoy anything. My life was just pain.

My GP prescribed a preventative anti-migraine pill (can't remember which), which didn't work, as well as triptans, which caused rebound migraines.

What turned my life around was finally getting to see a neurologist. He was the treating neurologist on duty one night in A&E, when I'd gone in because the pain was unbearable, and he said he'd take me on as a private patient.

He diagnosed Status Migrainosus and put me on a combination of amitriptyline and beta blockers. He warned that they would take some time to work, and he might have to change the doses or swap them out for other meds. He mentioned that in treating migraine, you often have to play around with combinations of different meds and doses until you get the right balance that works for each patient.

The amitriptyline/beta blocker combo ended up working well for me, but he did have to up the amitriptyline dose to quite high levels (150mg) before I saw real improvement, as the initial lower dose he prescribed didn't do much. It was so different to my GP, who threw two types of meds at me and when they didn't work, shrugged and basically said I don't know what else to do.

He also got me to keep a diary in order to discover my food and other triggers (caffeine and oversleeping were the two worst ones). He explained that the goal is to reduce the trigger load, so that the patient's brain calms down and becomes less prone to tipping over into a migrainous state.

It was a gradual process, but the combination of meds and cutting out triggers did reduce the frequency, length and intensity of the migraines over many months, until I was basically migraine-free. I have now been off all medication for several years.

I felt so sorry when I read your post, as I've been there and I know it feels as if this is your life now, that this will never end, but it's not true: with the right treatment you CAN get better and take control of your migraine condition.

The first step is to get yourself referred to a neurologist, as they are really the only doctors who know how to treat chronic migraine.

I also highly recommend this book: Heal Your Headache

It's by a neurologist at Johns Hopkins. He explains the mechanisms behind migraines, and how to interrupt them. I found it really useful for information about what was happening to me and why, and as a guide for working out my food triggers.

Best of luck OP. With the right neurologist and the right combination and dose of medications, you can turn this awful condition around.

Sorry, posted this before seeing that you have got a referral to a neurologist, but that the waiting list is long.

Is there any chance you can go private? I'm in Australia so not sure of the system in the UK.

My DD had migraines from the age of 5 ( she’s 27 now).... tried loads of preventatives..... now under the care of a neurological hospital.... tried acupuncture...no effect....now having 3 monthly Botox which has been a complete game changer..... her neurologist had to apply for funding and there is a criteria for acceptance ..... she is reviewed 12 monthLy but as long as treatment continues to be effective then the funding will continue......on the rare occasion she now gets a migraine she has paracetamol, coedine, sumatriptan self injection.... and when those don’t work she attends a&e and is given IV paracetamol and Oxygen therapy...... mind you it’s taken 22 years to get sorted ..... I really feel for you....migraine is so debilitating....good luck

I also got the 'waiting lists are so long' and when I did get a referral, I just got an advice letter.

I was lucky enough to be able to pay to go private and I read A LOT about migraine and triggers. For example I didn't think I had an aura but I do but mostly it's so brief I miss it, I have a long prodrome which sometimes I notice, sometimes I don't but if I do spot it I'm ready with my meds

The money I spent going private was the best money I ever spent and like the PP, the neurologist's approach was entirely different to my GP - much bigger doses but much more hopeful and I learned so much about what I could do myself.

@AnnaMagnani
I am half expecting to get the same sort of letter when I finally reach the end of the waiting list. I'm praying for that not to happen as there is no way I can afford to go private I don't think.
I'm currently still having the same migraine that's been here for 4 days now. I haven't taken any painkillers at all today to try to brrak the cycle of constantly taking them. Instead I've just been alternating icepacks on my head and when it got really bad earlier I took an antisickness tablet as I find the nausea even more debilitating than the pain. It didn't work though and I have ended up throwing up everything I managed for lunch. I can barely move at this stage as movement causes such bad throbbing pain and makes me feel so sick. I just feel so sorry for my son as he just has to put up with this as much as I do. It must be awful for him. Hopefully he will go to bed at a reasonable time tonight so that I can try to sleep.

@Kitkat151 I'm glad your daughter is finally getting some help with it! Fingers crossed I will find something that works for me soon as I have no quality of life at the moment. Thank you for your words of support.

That sounds horrible. I know diddly about migraines but lots about ASD parenting...

Has your son been referred to a sleep clinic or have you been prescribed melatonin? It was a complete life changer for us. What respite do you get for him? Eg at the moment vulnerable kids including those with ASD are entitled to go to school. Keep telling every service you deal with that you are not coping because of lack of support and you can't support him as you would like.

Only other suggestion is a pain management course, if a hospital runs one near you.

I was seen by a consultant at the National Migraine Centre. You can self refer and they are currently carrying out video or phone consultations. It is a charity so you can pay what you can afford. They formulated a treatment plan which the GP followed and now I feel that my migraines are well controlled. I would definitely recommend contacting them.

In that case I would really strongly recommend the National Migraine Trust to you.

Please get some help. My heart goes out to you.