to feel let down by the medical profession?(20 Posts)
NC for this because the details may out me to people in RL who know my story and above all else I value my anonymity here on MN when I need help from you great bunch.
Basically I suffer with constant pain. I have chronic migraine. I exist with it on a daily basis. My doctors can't seem to find any way to help and despite having had every scan known to man, there doesn't seem to be any end in sight. I have to function, I have a family, but I have a dreadful quality of life and I am really at my wits end. I don't think I can do this much longer.
Please please share a positive story to help me keep going. Tell me it won't always be like this.
So sorry to read that.
I ended up working out what the problem was, found the right Dr and went private to get dx.
I was being accused of making it up not just about me about my dc too.
We now know what the issues are. I don't trust HCP's anymore, I am a patient expert in our rare conditions, I so I can keep us safe.
Sometimes you have to give up on HCP's, sometimes you take their care.
I'm in your shoes. What medications have you trialed? Have you been to the national migraine centre in London at all?
I have chronic migraine too. I have had 6 lots of Botox treatments so far. The first five were on a 3 month basis and now there's a 6 month gap between treatments. I still get migraine, but the severity is much reduced.
I, also, take Topiramte, 50mg in the morning 100mg at night, Gabapentin 300 morning and at lunchtime, 600 at night, Atenolol 25 in the morning and Amitriptyline 100mg at night. I did start taking most of those drugs for other conditions but they do help migraines too. I had to get up to 75mg of Amitriptyline before it made any difference.
My meds are similar to fairy only I'm on nortriptyline not amytriptiline and I have Triptans for when I've got what I call a crash and burn episode.
I'm sorry to hear that you are suffering so badly. Is there any chance that the migraines could be food related? Wheat, gluten, dairy? Has your GP even entertained the idea?
I've got Triptans too for when I get a migraine. I do try to take aspirin first if it's not too bad, that's not always possible though.
I can imagine. I'm trying a new POP in the hope that it will stop me ovulating (my migraines seem largely hormone related), have started botox, upped my nortrptyline, stopped the gabapentin that had done nothing but make me forget words, and my GP is seeking advice from a neurologist to see if I can take my triptan daily.
The only thing that seems to work is frovatriptan. It has a 26 hour half-life.
Have you guys had your trap muscles checked out for tension and/or had your neck discs checked? I get my monster episodes when my muscle spasms happen in my traps. Is this a trigger for anyone else?
Also things that affect me are lighting (shopping centres and supermarkets are a nightmare for me), sleep deprivation and upsetting my normal routine (so laying in or staying up or having an early night)
I am overwhelmed by your kindness and support here. I am in Ireland and because some of my meds sound quite like the ones you have all mentioned (though the names aren't exactly the same - perhaps they are marketed under a different name here) I am going to make a list and get researching.
Yes, very little faith in HCPs when it comes to migraines, especially when they say things like "yeah I can get really bad headaches too" I see a red mist and just try to leave the surgery as quickly as possible.
Food diaries would suggest it doesn't seem to be diet related, but yes, definitely hormone related.
I would not be surprised if my trapezius muscles are involved. After my first dose of botox, my shoulders were terribly tender for weeks. The Dr said my shoulder muscles were really tight.
It may sound a bit woo but have you tried to adjust your diet at all? I have fibromyalgia and the pain (including migraines that left me vomiting in a darkened room) is increased tenfold if I eat certain foods. Honestly, I had to take a vast cocktail of painkillers, including having a high dose Butrans patch stuck to me at all times for years.
I drastically changed my diet, cutting out all dairy, processed foods, sugar, caffeine, alcohol, red meat, nightshade vegetables and joy. I felt better within days.
I now manage the vastly reduced pain with meditation and can even have the odd lapse back into happy food without long-term consequences!
Ask about being referred to a pain clinic, they are really good at taking a more holistic approach to pain.
Trap muscles?? Not sure what that means. Sorry.
Trapezius muscles. The ones from your neck to shoulders. Tension through them can cause migraines
Look up migraines and routine, medication overuse headache, lighting and smells. All can be triggers
I am lucky that I only get migrained occasionally but I know how awful they are and can't imagine coping with suffering them daily. I have certainly wished I was dead during a migraine on many occasions and I love life.
I think doctors do what they can, but the medical profession is limited by the current state of proper peer-reviewed scientific research (as they should be) so I think this is an area where we don't yet have all the answers. In your shoes I would look at the whole picture on paper. Write down the tests you have had, what they were for, what the results were. Family history of migraine. Any other medical conditions you have. What the symptoms are, how often, when etc. Then I'd get online and read everything I could from proper research to anecdotal evidence, even apparently quack cures. What other conditions is migraine linked with? Do they have anything in common? Look at physical causes (have you tried osteopathy) as well as physiological.
See if you can come up with a list of things to try and do it systematically whether it's a new drug or changing your diet or whatever. In your shoes I'd feel I had to leave no stone unturned and 'think outside the box'.
Hope that's not patronising. I imagine you've done a lot of this.
I really feel for you.
I've known a couple of people cure migraines by going to see a really good podiatrist or chiropodist...
I know it seems illogical if you have a pain in your head to treat it by going to see someone about your feet - and you do need to find a good one - but (oversimlifying massively!) the basic premise is that your body is a linked system. So, for example, lots of people have one leg that's a bit longer than another or another problem with their feet that makes them stand a bit wonkily. That then makes their knees hurt a bit so in order for them to be right they adjust their posture to make them ok - which throws the problem up to the hips... and so on right up to the head - which is where the problem basically stops and can't go any further, resulting in head pains - through trapped nerves, long term bad posture resulting in tense muscles around your head that trigger migraines and so on.
So, sorting the problem out 'at the other end' means that you can unpick the rest of the problems, ending up with the migraines. Unfortunately, the problems have probably been set over many years, which means that it can take a time for everything to settle back down to a new 'good normal' and other things might ache or hurt in the mean time...
It's obviously not the cause of all migraines, more that it can be a big factor in them for some people. however a good foot doc should be able to say if they think there are any problems around your feet end that are going on to cause migraines and if it's worth trying to do anything about it or if it doesn't look like they are the cause - in which case it's another potential cause of them that you have crossed off the list and hopefully got a nice foot rub out of too...
My migraines are hormone related. I get 4 day ones over ovulation and ago again when my period is due/ the first couple of days. I, get them at random times too. I can't drink any alcohol, eat chocolate, liquorice or anything really dark, Coke sets them off too.
When I have my Botox I have extra down my neck and in my shoulders. I've got severe lower back/pelvic problems so use crutches all the time. That doesn't help my neck and shoulders, I am going to ask my surgeons if it's ok for me to see a chiropractor. There's one near here who treats migraine. I'm at the point where I'm willing to try anything.
I sympathise with all of you. I don't suffer from migraines (had a painless ocular migraine once) and can't imagine...
I'm stringing a couple of previous posts but I've noticed that if I walk around in really flat, unsupportive shoes - Converse, ballet flats, etc - all day, I get terrible pain in my trapezius muscles. Like trapped nerve/can't turn head pain.
Might strike a chord with someone.
Ds1 used to experience migraines and I gave him feverfew herb which helped.
Magnesium citrate is also supposed to help as a preventative.
Keep a food/drink diary to see if there are any dietary triggers.
Go onto YouTube. People share their experiences on there and you can find some very worthwhile advice and info from people.
I get almost constant crippling migraines when I have dairy in my diet. Combined with lethargy, dizziness, aching.... It's hideous. Could be worth a shot? If I have dairy it takes a good few weeks to get out of my system so wasn't easy to spot
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