Migraine and chronic daily headache - ruining my life

Mancescu

I've had migraine since i was five but over the last four years they've gotten really bad. Its all hormone related with me. I now suffer from daily headache (that builds up into migraine), facial pain, extreme tiredness, fogginess, smell/noise sensitivity. Every single day I'm in pain and it's becoming so difficult to get through. I'm going to a neurologist the last year and have been going through various treatments but haven't really found the right mix of pain management yet. I've missed a lot of work and since i got back from a series of treatments i've found that i more or less had to pretend i am better than i actually am. I do find that some people get tired of you being sick. That's a tough thing to take. My husband and my mum (who is also battling her own chronic illness and cares for my sick father, with help from myself and my hubby of course) are amazing and I'm truly lucky to have such caring and supportive people in my life. I love them so much! but I still feel so alone. I really wish people understood how hard it is to just get up, go to work, get through the day and do the things we all have to do to keep things going. I know I'm a good person, a good daughter and a good partner, myself and my husband are a great team and I mind my parents as best I can. Myself and my mum support eachother and get eachother through tough times. I want to be a mother, I want to perform well in my job and just even be there everyday, I want to be sociable with my friends, i want to do the things I enjoy, I want to be truly happy Instead of faking it all the time. I see everybody getting on with their lives and I want to be like them. At the moment I'm just not seeing an end to this pain and I'm not feeling very strong right now. Any tips on how to deal with chronic daily pain and the feeling that life is just passing you by?

Riven_Sky

Hi Mancescu,

I've had migraines since I was a teenager. Two years ago they got worse and became chronic daily headaches very like what you describe; daily pain building to a migraine, tiredness, noise sensitivity. It drove me to distraction, curtailed my life and impacted my work. I was miserable and dragging myself through every day.

I know exactly how you feel about pretending to be better than you actually are and people getting tired of you being sick when you're stuck living in that nightmare day after day. I managed to stop my daily headache with a combination of medication and lifestyle changes but, knowing there was no guarantee that was going to work, I had looked into other options - one of these was looking at a psychological approach to managing the pain and how I was dealing with it.

Options I came up with were some kind of mindfulness based approach or something called acceptance and commitment therapy, which has been used with success for people with chronic pain. It's about helping you accept and deal with the pain and grow more aware of how's it affecting your thoughts and behaviour. There some evidence that both these approaches have been shown to be helpful in people with migraine, though the exact reason behind it isn't known.

I've done a lot of research on migraine and its transformation into chronic daily headache. I haven't included any of that here, as it wasn't what you'd asked about, but please let me know if you feel this information would be useful. It definitely helped me in getting rid of my daily migraine.

L1985

Hi, I know exactly how you feel as I was there. I think I went through an entire personality transplant as I was in just continual pain for a year lost my job er over it and got to a really bad place.The days that were pain free I was nearly shocked I felt 100 times lighter. People don't want to hear over and over -I'm actually feeling awful and I'm having a really bad day. It's fine for a one off but continually??no it's something that if you don't know what it is you can understand. And when it keeps going on what more can be said?
How I coped was keeping a diary deff helped to find some of my triggers I still havnt found all of them. Really celebrating and enjoying the good days I refused to let it beat me and I get paraplegic migraines as well as the chronic ones but I wouldn't let the fear of getting one stop me doing anything because then id give in to it. And keep trying different things and believing you will find something that will work for you . I eventually did although the frequency is starting to creep back up again.
Your in a horrible place right now the mental fog is horrendous I remember one time standing outside a row of houses and not knowing which one was mine that's how bad I was getting. You will find something that will work just keep trying and keep recording everything!that therapy mentioned above sounds really good idea as well

Mancescu

Riven_Sky wrote: »

Hi Mancescu,

I've had migraines since I was a teenager. Two years ago they got worse and became chronic daily headaches very like what you describe; daily pain building to a migraine, tiredness, noise sensitivity. It drove me to distraction, curtailed my life and impacted my work. I was miserable and dragging myself through every day.

I know exactly how you feel about pretending to be better than you actually are and people getting tired of you being sick when you're stuck living in that nightmare day after day. I managed to stop my daily headache with a combination of medication and lifestyle changes but, knowing there was no guarantee that was going to work, I had looked into other options - one of these was looking at a psychological approach to managing the pain and how I was dealing with it.

Options I came up with were some kind of mindfulness based approach or something called acceptance and commitment therapy, which has been used with success for people with chronic pain. It's about helping you accept and deal with the pain and grow more aware of how's it affecting your thoughts and behaviour. There some evidence that both these approaches have been shown to be helpful in people with migraine, though the exact reason behind it isn't known.

I've done a lot of research on migraine and its transformation into chronic daily headache. I haven't included any of that here, as it wasn't what you'd asked about, but please let me know if you feel this information would be useful. It definitely helped me in getting rid of my daily migraine.

Thanks so much for the response riven_sky. It means a lot. Sorry I'm only getting back to you now, I've had another treatment done so just riding out the side effects. I want to try for a baby so not on any daily meds. I would really appreciate any info you might have actually, forearmed is forewarned as they say. I really don't want this illness to take over my life so I'll try anything. Ill make whatever changes necessary, ive found i e neen fighting the pain and it doesn't seem to work because i end up getting really sick. The therapy and mindfulness route sounds like a positive step I could take, I don't want to spiral downwards and I can sort of feel that I am. I've gone down the acupuncture route as a complimentary treatment but only got mild and temporary relief. Have tried a few things to no avail so maybe it is the time to try something like that. Again, would really appreciate any info you have. It's great to hear from someone who knows what it's like!! 😊

L1985

Actually massages helped me a lot as did walking outdoors a lot more.fresh air really cleared my head! Was looking back through my notes and they are the two that stand out. Acupuncture and cupping helped a slight bit but it wasn't really effective. Watching my sugar levels helped as well. Also avoiding any loud excessive noises eg hair dryer Hoover drove me crazy. Music really helped as well oddly enough as it was a noise level I could control and it could distract me as well. Hope that makes sense

Mancescu

L1985 wrote: »

Actually massages helped me a lot as did walking outdoors a lot more.fresh air really cleared my head! Was looking back through my notes and they are the two that stand out. Acupuncture and cupping helped a slight bit but it wasn't really effective. Watching my sugar levels helped as well. Also avoiding any loud excessive noises eg hair dryer Hoover drove me crazy. Music really helped as well oddly enough as it was a noise level I could control and it could distract me as well. Hope that makes sense

Thanks L1985! It's funny you say that because I find exercise definitely alleviates the pain even if it's just for an hour or two. I haven't been walking as much as I used to because the treatments i've had really knocked me for six. But I'm getting back into it slowly but surely. And yeah, loud noises are really hard for me. I can't even listen to the radio, it really grates on me but I can listen to music alright....reckon it's that the tone is slightly different or something. And i make sure I eat little and often so as not to cause a migraine. I work on a floor with about 100 people so it gets pretty noisy, plus there's no natural light and it's all aircon. Not the most healthy of atmospheres but I make sure I leave the office at lunch time otherwise I'll suffer later. My job can be quite stressful too, the work is hard but I enjoy it. I find the politics and survival of the fittest culture difficult too but I need to find a better way to deal with all of that because I know it doesnt help matters. I Haven't gone down the massage route so will definitely give that a try 😀. Thanks for the advice, you're very good to come back to me. ðŸ‘

L1985

No problem it's a horrible way to be I wasn't great today myself so it brings it back when it was really bad. Yeah it's the change in tones and pitches that kill me I can't listen to the radio but music helps because I can control the sound??dont know if that makes sense but rock music or music with a loud beat helped a lot. People talking used to aggravate me a lot at certain points. Only thing I can say is be careful I got into such a negative mind space that even things I know helped I wasn't doing them any more eg walking because nothing seemed to help. It's hard to pull yourself from that but do and go for that walk,monitor your blood sugar etc and see what helps you. The little things do help it just feels like they don't a lot of the time my heart goes out to you but as trite and clichéd as it is your not the only one!!look into that mindfulness thing as well sounds positive.

greep

Guys, change your diet - it does help, though might be extremely hard to change your old habits.
Also, try alternative medicine - bioresonance / zapper (read about dr Hulda Clark, Rife, Beck).
Also 're-wire' your brain - type JOE DISPENZA in google or you tube & watch some videos.

These are just tips, but don't expect that some magic pill will sort your migraine - it takes more than that - good luck!

SATSUMA

I changed my diet it made ZERO difference. I've struggled like the OP as long as I can remember. I have found homeopathy to be really helpful, not quite a cure yet but very helpful. I know it's not everyone's cup of tea but when you're in contant pain you'll try anything for relief. Trust me I know.

Graces7

My migraines were disabling for years. I made the connection with my monthly cycle and for this and other reasons had a hysterectomy early 40s and they stopped dramatically. Some few since ususally as U have M.E and extremes of temperature and acute stress lead to migraines. Not for over a year now. I have a pack of the inhaled nasal meds untouched so cannot say if they work or not. I think too age lessens them? Over 70 now. I have to take care to unwind slowly after stress ie nto to suddenly rest .