I'm Kirsty, a 30 year old nurse from Scotland and I have had migraines for as long as I can remember. However they have never been particularly frequent, maybe twice or three times a year. I did have a spurt where I had one almost daily for a few weeks when I was in my final few weeks of college, I put it down to stress and never really thought much of it although come to think about it I never had any more throughout my university training which was much more stressful than college!
I have always had aura with my migraines and can actually often prevent a full blown attack by taking painkillers as soon as aura starts and lying down for a while but they have gotten a lot worse in the last year or so.
When I started my first staff nurse post I again had a spurt of migraines - the actual headache wasn't too bad but my aura was so bad that I had to get one of the other nurses to do my medication round because I couldn't read the charts! Again it lasted a fortnight or so then went away and I didn't think much about it, putting it down to the new job.
Since then I have been getting really severe migraines, much worse than ever before. The aura leaves me nearly blind at times and a little confused which is also new for me, and my memory is totally shot, I cant remember conversations I have had with my partner the next day after a migraine, this is also new. the pain is also much worse than ever before. The last one lasted three days which is really unusual for me, normal for me is maybe between 5 -8 hours. I have also started feeling really sick with them which again is new for me.
I take a triptan as needed which has always worked really well but it doesn't seem to be having the same effect as it used to, it does take away some of the pain but certainly doesn't stop the attack like it used to. The only other medication I am on is the mini-pill (I used to be on the combined one years ago which apparently I should never have had as its totally unsuitable for people who suffer migraine with aura), omeprazole and an antihistamine. I've been on this particular pill for at least four years, the antihistamine since I was a teenager and the omeprazole for around six months. so I doubt medication is the cause for the increase.
Its starting to affect my job, ive been warned about my sickness absence already and ive only been in my job 18 months! I need to get these migraines back under control, does anyone have any ideas? I am going to make an appointment for the GP once I am finished my run of nightshifts next week but they have not been great with me recently.
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Hi Kirstyo welcome 😆 do you have any other things going on? Do you click or pop when you eat? Grind your teeth at night?
Hows your neck?
I've suffered 40yrs now, always coped until they changed 4yrs ago. Went through every prevention med, tens, cefaly, chiro, physio, Indian head massage, acupuncture, GON blocks, botox, DHE treatment, you name it I've done it ....sigh!!!
I have a kinda high stress lifestyle, but I wouldn't say the current stress levels are abnormal for me but maybe they are and I just don't want to admit it. I don't think I grind my teeth, in fact I'm not sure I can - I have a pretty bad overbite where my top teeth completely cover the bottom ones, theres not much room for movement when my mouth is closed.
Today wasn't too bad, a bit more like the migraines I used to have but the last one was awful and totally different. I had a sore neck, a temperature, confusion and poor memory all of which was new for me - I actually considered calling the out of hours dr but just went to bed and pretty much stayed there for 48 hours by which time it was time to go back to the twelve hour shifts for the next four days and I just never followed it up. I have been working a lot of nights recently, but its not abnormal for me to work nights just the amount of them that's changed. The only other change I have noticed is that I am definitely not sleeping as well as I used to.
I have never tried anything other than the triptan medications, they have always worked well up till now or even if they didn't because my migraines were so infrequent it wasn't a massive problem to just go to bed and sleep it off.
Oh I do have a trapped nerve in the back of my shoulder blade, I hadn't thought about that till just now. I've had it since an accident in 2011 but its been giving me a lot more bother recently, I wonder if its related to that?
I always had aura ALWAYS. Until 4yrs ago, car accident (passenger ) severe whiplash, worked on my neck for 6mths but migraines never left, I'd often leave the physio/chiro with a migraine but no aura?
Then i sourced a top max-fac guy and he confirmed severe TMJD, had athrosentisis, locked my jaw . Now Edinburgh dental institute botox my jaw every 3mths, definitely helps but i fear they never injected the right area this time 😣 had migraine 15 days running now.
Sumatriptan injections help me more than the tabs and maxalt melts 👍
Getting them to listen to me about the trapped nerve is beyond frustrating. I was a passenger on a bus that did an emergency stop, I was on one of the backwards facing seats and injured my back pretty badly, as the pain in my back subsided I became aware of issues under my shoulder at the back (about where your bra sits, maybe a little higher) I got some physio and that's it all they keep doing is tell me to go back to physio. most days when I wake up I have pins and needles so bad I cant even pick up my phone from my bedside cabinet but all they say is physio which does help in the short term but it always comes back just as bad. Migraine pain is and always has been on the opposite side.
I have always had aura, I remember as a child being fascinated by the coloured lights but now its more bright flashing white lights and the classic curve of loss of vision in my right eye (same side as pain) I never get nausea or vomiting well until recently.
Hi Kirsty, Welcome to the group - I have just read your blog and wondering if it could be the Omeprazole that is causing your migraines to worsen. You say you have been taking it for about 6 months. Do you think your migraines got worse after taking the Omeprazole as it doesn't suit everybody. I am a chronic migraine sufferer and was prescribed Omeprazole last year and it really didn't suit me and made my migraines worse. I was just wondering if it could be doing the same for you, it's just a thought. I am so sorry your migraines are starting to affect your job and hope you will be able to get some relief eventually. We are all struggling to find a way to get some relief but it's a very difficult. Good luck.
I honestly don't know if it could be the omeprazole but I do know I cant go without it. I had helicobacter for years before anyone believed me and agreed to test me for it, I had the triple therapy at the end of October maybe beginning of November and you are supposed to stay on omeprazole for six months after. I tried going a day or two without it recently but the pain from the reflux was too bad. I could ask for a different ppi I guess but the migraines increased in frequency before I started taking it, definitely still worth a shot though
Hi again Kirstyo, If your migraines increased in frequency before you started taking Omeprazole then it probably is not the cause and if you cannot manage without it you really have to take it. You could ask for a different ppi or a different make even, they all have different packing agents.
If you are getting different symptoms with your migraines you could ask to see a neurologist. I finally got to see one a few months ago and they go into things more thoroughly than a GP. Mind you it's taken me years to be referred but I think my GP didn't know what to do with me! My migraines have also altered as I've grown older and I now get awful nausea as well as the migraines. There is a lot of medication that you could try if you've only ever been using triptans. Preventatives don't suit me but some people seem to get relief from them. We are all so different and respond differently to medications.
I am sorry to hear you have also got trouble with your shoulder and not getting very much help. The pain from your trapped nerve could be causing your migraine problems. I think the answer is keep going back to your GP until you get some help. I have spent years trying not to be a nuisance and it got me nowhere. Now I just keep going back and then it seems they eventually have to do something to help.
Good luck Kirstyo, it really sounds as if you do need some help so I really hope you get it. I wish I could be helpful, take care ...
I think my exact problem is that I do not go to the dr and complain enough. I have seen my dr maybe ten or twelve times in four years but I tend to go when something else goes wrong - say tonsillitis and only mention that, I always mean to talk about my ongoing issues (shoulder, migraines and ankle issues) but you know that way where you are rushed out the door as soon as they agree you have tonsillitis and give you your antibiotics and you just don't get a chance to ask.
I think I will ask to switch to a different ppi, it wont hurt and it might just help. The dr probably doesn't even know how bad my migraines are to be honest, I had one phone consultation about a migraine with a locum dr who represcribed my triptan as it had never been prescribed by the gp I am now with. When I run out I ask the receptionist for a 'special request prescription' for them (anything that's not on your repeat list at my surgery) and they always just give me them no questions asked.
The chances of me getting a referral to neuro are slim to absolutely none. I have been asking for a specialist referral for something else for over a year and keep getting told I don't need it. I honestly think I need a new GP but its all the hassle, plus my partner has a long term condition and has a great relationship with the GP he sees at our surgery.
I know how you feel about not liking to keep going back to see the Doctor but they are paid to see us. I would make a double appointment if you can so you have time to discuss your migraines in more detail and just concentrate on that alone for that visit. There are quite a few different triptans you can take. I find Zomig work best for me but others don't work so well. If you don't get any relief, keep going back to see your doctor and then eventually you may get a referral to see a neurologist eventually. It does take a few visits to get them to realise you really need help. Good luck.
Hi my migraines got far more severe and frequent after I tore a tendon in my shoulder. It's now like refferred pain. My shoulders neck and head pain all connected. Could be the same with your trapped nerve.
It very well could be. I am going to make another appointment but they don't seem to want to listen to me about my shoulder for some reason I have been telling them about it since we moved here four years ago
Dear Kirstyo, please, please, please take the trouble to read about Dr Angela Stanton who suffered with migraines herself for 20 years. Her Kindle book costs only £3.49 on Amazon called "Fighting the Migraine Epidemic." A month ago I was at the end of my tether, having suffered migraines on a daily basis for 45 years, and especially after my doctor told me she could no longer let me have 12 Imigrans (Sumatriptans) per month, but only 6. I was frantic with fear!! How on earth would I possibly be able to work when I have only 6 Imigrans at my disposal per month? The first thing I searched for was where to buy Imigrans from and I discovered a website where I bought a packet from for about £20 - I still have 4 left - including the packet my doctor prescribed!
Utterly desperate for an answer to this debilitating condition, I turned to the Internet and discovered The National Migraine Centre. Discovering other people suffering from the exact same symptoms as myself, was simultaneously liberating and an extreme relief, as I had become so isolated in my struggle against this constant, daily pain, and I just couldn't explain it to anyone else. How could I possibly expect them to associate with my symptoms?
I have been through the mill - like so many other migraineurs have - and loathe the idea that I cannot go anywhere without triptans and some painkillers in my handbag, but I have never had a choice in the matter. I read how others list the various things they've tried. All I can say is "Been there, done that and have the T-shirt to show for it!" The amount of money I've spent on remedies, treatments, therapies and medication, is painful thinking about!
I have always maintained that I would find the cure to my migraines myself, as I have long since realised that doctors really do not have a clue what the causes of migraines are. We are only their guinea pigs for them to experiment on. So, I immediately bought Dr Stanton's book and started reading straight away. I couldn't wait to get to the end of her book. I have to admit I thought it was going to be difficult to manage my symptoms, but in fact, it has been a breeze. I just play it by ear, and during the last month (tomorrow, to be exact), I have only had the need for Imigrans on 3 occasions - and only 50mg at that!
Basically, it is all about balancing your sodium, potassium and water intake. An imbalance is what brings a migraine on. All to do with the neurotransmitters in your brain. Fascinating stuff. The only added things I take - read about someone else taking it and saying it has stopped her migraines - are Trace Minerals Electrolytes Liquimins Power Paks (I take 2 sachets per day) and Trace Minerals Electrolyte Stamina tablets (2-3/day). I also take Magnesium, Feverfew, Potassium, Vit B12 and Vit B2 (400mg/day) daily. Contrary to Dr Stanton suggesting energy drinks, I prefer the healthier version of electrolytes. I also differ from her with regards to salt. Iodised salt or table salt is poisonous. I use pink Himalayan salt. I drink clean, filtered water with about 98% of the bacteria, fluoride, heavy metals and even arsenic removed. (Check out the Berkey filter).
What has become abundantly clear to me, is that my salt-intake was way too low! I am a healthy eater who consumes lots of veggies and salads, although I have a sweet tooth I have made Grandma's chicken soup, frozen it in small batches and quickly reheat and eat it if I feel a dull headache coming on. I have had a rather bad headache come on one particular day, took a sachet of the electrolytes and low and behold, had I not known any better, I would have thought I had taken two painkillers, as the pain simply disappeared after about 15 - 20 minutes!! Other times I would go and drink a glass of milk or eat a few pretzels or a banana.
PLEASE, PLEASE believe me when I say that this is genuinely working!!! Every time I read a notification in my mailbox, I was bursting to share my amazing journey, but thought it best to give it proper time. Well, it's been a month, and the best one of my life. Simply waking up every morning without a headache or a migraine, working without a migraine and living without constant migraines making my life a living hell, is one of my biggest blessings yet! Some days I still struggle to believe it. I cannot thank Dr Angela Stanton enough for her research. She has given me back my life! And the relief knowing that the pain is no longer dictating my life, is beyond my wildest dreams!!
I will definitely check it out. I also have selective eating disorder so I don't doubt that my vitamin/mineral etc levels are not where they should be due to my very limited diet
Is there any family history of autoimmune disease including thyroid, early heart attacks or strokes or miscarriages etc? If this sounds familiar come back to me. MaryF
I have suspected for a few years that I have an underactive thyroid but because the uk test thresholds are much lower than they should be I test ok (I might have private testing done actually). Both my mother and I have a skin condition called hidradenitis suppurativa which they think possibly has an auto immune component. My grandfathers on both sides have heart issues and my dad has coronary artery disease, all of them started in their 50's so not terribly early. No one that I know of has had a stroke. My mother had five miscarriages prior to having me but I don't think anyone else has had any, mum had some experimental hormone treatment to have me
Your family history is definitely relevant. Hughes Syndrome/APS - sticky blood, full other name Antiphospholipid Syndrome,
Here are the tests do them at the hospital as the samples taken are time sensitive:
• Anticardiolipin antibodies (aCL)
• Lupus anticoagulant (LA)
• Anti-beta2-glycoprotein-1 (anti-B2GP1)
The second test is not a Lupus test, (just an old fashioned name for the Hughes Syndrome/APS test)
Thyroid testing, is a good idea, as the trio of disease is often Hughes Syndrome, Thyroid and Sjogrens, I administrate a forum on here with colleagues called Sticky Blood-Hughes Syndrome Support, but do stay on this one also. The thyroid tests I did were via Thyroid UK also on here who lists private testing and where to do it and how much, my last panel of tests were around 120 quid. We also urge our members to test B12, D and Iron (ferritin) also.
I have all the symptoms of an underactive thyroid and have had since 2011. I put on a drastic amount of weight, despite being in training for a 5k at the time, became intolerant of the cold, tired all the time, dry skin that I had never had before you name it if its on the list of symptoms I have it. I asked my then GP to test me and she did, everything came back normal (according to the UK diagnostic thresholds which we all know are incorrect). I then moved house in 2012 and asked to be tested again at my new GP again it came back 'normal' they will not retest me and just say I need to go to weight management groups, they are not interested in the fact that I have other symptoms, only in the fact that I am far too overweight.
I don't know how I would even get those tests done, but I will certainly look into it, thank you.
Blue Horizon plus 11 is the one I did, and then you can take them to the GP. I have Hughes Syndrome, Lupus, Sjogrens, Slow Thyroid, Stevens Johnson type reactions, and Psoriatic Arthropathy I am no NDT and doing fine with that. MaryF
ps if you iron is low your thyroid will not take up any medication, and if they do say you need iron, it needs to be taken four hours away from any thyroid medication.
My iron levels have always been fine, I have had them tested quite a few times but I guess it doesn't hurt to have them retested. I will definitely look into getting the tests you mention
I know a lot of people have bad experiences with omeprazole but my problems started a good while before I started taking it so I have never thought that was the problem. TBH not taking the omeprazole is not something I am willing to do, that is how bad the symptoms are of my ?ulcer ?GORD ?reflux issue. I may try a different PPI but I definitely couldn't go without one.
No I probably haven't been fully tested, my GP is not interested because my TFTs came back within their normal range although I do plan on asking exactly what the numbers were the next time I visit them.
Unfortunately I have no choice but to work a mix of night and day shifts. The only way I could stop that would to be to get a clinic or district nursing job and not only don't I want that but I couldn't afford the pay cut, I couldn't survive without my nightshift enhancement
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I have made Grandma's chicken soup, frozen it in small batches and quickly reheat and eat it if I feel a dull headache coming on. I have had a rather bad headache come on one particular day, took a sachet of the electrolytes and low and behold, had I not known any better, I would have thought I had taken two painkillers, as the pain simply disappeared after about 15 - 20 minutes!! Other times I would go and drink a glass of milk or eat a few pretzels or a banana.
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