I feel like I have a condition that doesn’t exist. I get frequent, severe migraines but I don’t tolerate any of the prophylactic medications I’ve tried (e.g. beta blockers, topiramate, duloxetine). I no longer tolerate aspirin, ibuprofen, paracetamol or naproxen- they all give me bad stomach pains, and I don’t tolerate PPIs or H2 blockers (they give me severe headaches!) that would otherwise help with the stomach pain and help me tolerate pain killers. I no longer tolerate alcohol either.
The situation is making me very depressed but I don’t even tolerate antidepressants any more (fluoxetine, venlafaxine, citalopram, sertraline, mirtazapine).
If anyone has ever heard of this ‘phenomenon’ and has any suggestions, I would be really grateful. It’s really affecting my quality of life and my family are concerned. I’m even open to the whole thing being psychosomatic. I told my GP that if they thought it was all in my head, I could accept that, if there was some psychological therapy to treat it, but they didn’t express any opinion 🙁

Could it be the fillers? Worth going through the list of ingredients.

Have you tried eliminating certain inflammatory foods from your diet to reduce the severity of your migraines?, i only say this as i follow a few health/fitness related podcasts and this subject came up recently on one of them.

Radio 4 did a programme on cluster headaches recently. May have some advice?

http://www.bbc.co.uk/programmes/b03ynt72

Eat some cannabis and see if that helps. (seriously)

somafunk- thanks. So far, I’ve only tried eliminating cheese from my diet (for 5 weeks) and that didn’t prove to be the culprit. Can you suggest any reliable website ms that could advise me on potentially inflammatory foods?

From the blog…

cbike- the doctor I saw at A&E 10 months ago wondered if it was cluster headache and wanted me to see a neurologist but no, the Salford Royal won’t see me.

Its not a condition I have ever heard of and I am a registered nurse ( not that that means a whole heap of course – unlike docs we nurses know we are not omniscient 😉 ). I’d be very very careful where you take advice from on the net – the amount of nonsense to the amount of good information is very high.

Paracetamol giving you stomach pains is not something I have ever heard of altho its not uncommon with Ibuprofen and the like. When you say you can’t tolerate antidepressants what are the symptoms? Have you tried the older tricyclics? the ones you list are all SSRIs

I think asking your GP for a referal to a neurologist might be handy

Even if its not all in your head some CBT might well be very useful to give you the mental tools to manage the situation better.

My best man from pretty much constant migraines and has been on painkillers for so long (getting on the last 20 years) that nothing very much works anymore. He’s now taking a combination of tramadol and cannabis as they’re pretty much the only things that have any effect.

You have my sincere sympathy.

tjagain- my GP tried to refer me to a neurologist but I found out today that the neurologist has rejected the referral and won’t see me.
Side effects of antidepressants are as follows:
Fluoxetine- severe stomach ache/ reflux
Citalopram- migraine worsened
Mirtazapine- knocked me virtually into a coma
Venlafaxine and duloxetine- severe stomach pains

I haven’t tried a tricyclic but since they are considered less tolerable than everything else I’ve tried, I don’t hold out much hope.

The consultant is wrong to refuse the referral. Thats time for a formal complaint I would say. The GP is the gatekeeper not the consultant. ask to be referred to someone else.

I have never heard of stomach pains from SSRIs – upset yes but not pains. Mirtazipine is known to be sedating.

There is clearly something odd / unusual going on with you. Sorry I can’t suggest anything much else.

If you can get it there in the UK or online, try Lipigesic-M for the migraines. It is non-prescription and primary ingredients are the herb Feverfew and Ginger in a thick liquid that you put under your tongue at the first signs of a migraine.
I have had migraines for 40 years and tried every prescription out there. Most work OK, but the side-effects are crap. I have used the Lipigesic-M for 5 years now and it works as well, if not better than the RX drugs—and costs much, much less.
The ginger component really helps with the stomach issue as well.
Edit: their website is: http://www.lipigesic.com/

Depending on your finances it may be worth seeing a neurologist privately and self funding. Waiting time is normally a couple of weeks and at least if you have 45 mins to talk it over with them they may come up with some ideas.

Do you get the visual aura etc or is it mainly pain?

Mine disappeared after I had a large rear tooth removed, never to return 😆

https://www.migrainetrust.org/about-migraine/trigger-factors/jaw-tension/ 💡

I had frequent migraines and headaches for quite a while.

Unrelated GP visit picked up diabetes and once that was under control they stopped.

Don’t want to second guess real medical advice, internet is by and large useless for this kind of thing, someone will pop up with gluten free, paleolithic diet guff soon I bet.

What tests has the GP referred you for or has it been a case of try these tablets and sleep it off?
Seem to remember a link with some mild and treatable heart defects being published a few years back. Can you get a second GP opinion, they have a tough job but like any job there are good and not so good ones.

Might be worth contacting these people rather than a bunch of cyclists 🙂

http://www.migraine.org.uk/

“I feel like I have a condition that doesn’t exist.”

It’s affecting you, so yes it does exist!

There’s every chance hat there is more than one complication happening at the same time, which is making the situation difficult to easily diagnose.

“my GP tried to refer me to a neurologist but I found out today that the neurologist has rejected the referral and won’t see me”

Ask for the reason why, and it had better be a good one!! I would go back to the GP on this one, you deserve a better explanation.

If there is a reasonable explanation or you end se a neurologist and they don’t find anything then you may need to start thinking a bit laterally, like the tooth problem mentioned above. Be methodical, and try to cross things off one at a time. Some ideas:

1) Diet. You havealready said that you have an intolerance to alcohol, there may be others that you are unaware of. Asking your GP to se a dietitian may help here (dietitian is a protected title, like being a doctor ro a lawyer, nutritionist is not).

2) Lifestyle. We don’t live in a bubble, things do affect us, and they can affect us with surprising severity! None of the symptoms you have described fall outside of what can be cause by stress. Do not underestimate it or rule it before you are certain!

3) As above, if the pharmaceuticals aren’t working then there are other places to look for relief. CBT, as tjagain mentioned, is one, mindfulness is another. Start looking around and find something that works for you!

Plus one for the Radio 4 program.
Catch up at http://www.bbc.co.uk/programmes/b07lg6jv

You should be able to get your GP to refer you to their specialist clinic at Guys hospital…

http://www.guysandstthomas.nhs.uk/our-services/neurology/specialties/headache-clinic.aspx

I heard magic mushrooms could help cluster headaches, Might be rubbish but nothing ventured nothing gained

It all sounds a bit like there was an old lady who swallowed a fly…

Your problem is migraines.

You seem to be getting stressed because the medications you have taken for migraines don’t work, and the medications you take to offset the side effects don’t work, and the medications you take to offset the depression because the medications don’t work and so on.

Start again.

Start looking for medications or lifestyle changes that help with migraines and recognise that the migraine is the issue and is therefore the thing to address.

Ask your GP about gabapentin, but don’t get stressed if it doesn’t work for you.

Hi vicky, I don’t have anything useful to say about what condition would make you intolerant to such a wide range of medications, but if you haven’t tried it, get your GP to sort you out some oxygen for home use. I don’t know about its efficacy for migraines but if what you’re suffering from are Cluster Headaches oxygen can be very effective, and there’s far less resistance by GPs to prescribing it compared to some of the more heavyweight pharmaceutical options. I’d also guess you’re unlikely to react badly to it. I’ve found 15 minutes at 15 litres per minute very effective, and far more reliable than triptans.

A friend and of mine is suffering from migraine and depression. She also has some of the worst muscle tension in her neck and upper back, that dry needling can’t even sort out. Eg the needle got stuck in the muscle (but not elsewhere) Anyway have you checked your back and neck with a good physio? Not saying your migraine is from muscles issues but if you’re looking for needle in haystack typr stuff, could be something to look into?

A friend and of mine is suffering from migraine and depression. She also has some of the worst muscle tension in her neck and upper back, that dry needling can’t even sort out. Eg the needle got stuck in the muscle (but not elsewhere) Anyway have you checked your back and neck with a good physio?

This +1. My wife currently has a number (but not all) classic cluster headache symptoms, but has found that all of them can be triggered by deep muscles compressing nerves in her neck and shoulder. Physio was able to both relieve and recreate symptoms.

Might be worth checking given your problems tolerating medication.

OP – i get migraines aswell so i can understand your desire to get rid of them/be able to control them

But, i have never tried so many drugs/medics! If i were you i would try really taking a step back and looking at all the things mentioend above – diet stress etc.

I am now using accupuncture for mine, and its holding them pretty steady – only had 3 in 2wks holiday. Normally 2-3 a week..

most of the time its actually better than 3/ 2 week period.

give it a shot – cant be worse than migraines..

Thanks everyone for all your suggestions.
I do think at least part of the problem is stress from my job. I have tried mindfulness a bit, but I think I need a mindfulness or meditation class to get me started. I looked into it last night but they’re all taking a summer break, though I will look it up again next month.
I do see a good physiotherapist about tension in my neck and shoulders every now and then, but he is a 40-minute drive away which is a bit tricky to manage with a full-time job and a family: basically an appointment uses up more than 2 hours out of the day. I tried a local physio recently but he made it worse and charged me £45 for the pleasure.

I tried acupuncture with a Chinese lady several years ago, and she was pretty good (apart from the pressure to take Chinese herbal pills too). She moved away though, and the 2 acupuncturists I tried subsequently didn’t seem to be effective.
I don’t want to take heavy-duty drugs and am open to alternative solutions, but after 18 years of trying things, I’ve become fed up!

I was about to ask about stress but you have just confirmed it above. I used to get a lot of headaches as well, some tablets called midrids helped me but you need to really address the cause and not the symptoms.

my GP tried to refer me to a neurologist but I found out today that the neurologist has rejected the referral and won’t see me

get referred to someone else,

I don’t want to take heavy-duty drugs and am open to alternative solutions, but after 18 years of trying things, I’ve become fed up!

totally with you on that. i have had them for 20yrs (and a bit, god im getting old).

i have a backup of relpax with me at all times, triptan. that is sure to work for me, but i get a follow up migraine the day after or so if i take them..

if you reacted well to the accu, try again with someone else – where are you based? i am in lausanne, and tried 3 before i found one that worked for me.

its not worth not trying, we’re here once, and it goes fast.. dont want to be in pain..

i have tried:
teeth
neck and back ‘stress’
general stress
physio in back, neck, mouth
coloured glasses,
feverfew
lipisgec (mentioned above, i forget the spelling)
neuro (he told me, you have migraines, take pills.)
hypnotherapy
diets – no lactose, no red wine, no choc

I have exactly this issue, I know how you feel!!! My problem is actually down to the migraines. Migraines can make you hypersensitive to pretty much everything (just like with the more common things like light, smell, sound), as a migraine can involve your nervous system becoming hypersensitised. Migraines can affect any part of your brain so can create any symptom (for example hemiplegic migraines create one sided paralysis!), pretty scary really! For me this has meant I become overly sensitive to medications as well. Even at a quarter dosage (2.5mg), Amatriptyline worked, but caused internal bleeding within 4 weeks of taking it, even at such a tiny dose. Nortryptiline did the same. Propranolol made everything 10x worse, and I get dizzy/woozy just taking paracetamol when I have a migraine. If Naproxen doesnt work to clear a migraine, I get dizzy and stomach pains as well, dont even start with co-codamol, gets me high as a kite 😉 However, if I take paracetamol, co-codamol or Naproxen when Im not having a migraine, they have no side effects. That should be a big indicator whether its the migraines causing you to be more sensitive to medications, not easy to figure out when you have them on a daily basis though!

Personally there are 3 things, much more natural than the drugs a GP/Neuro will throw at you, that have worked much better for me:

Magnesium citrate daily (proven to work for 50% of sufferers, higher than any prescription drug, but bizarrely not usually mentioned by Drs). Its a calcium channel blocker like a lot of the prescription meds, but with a fraction of the side effects, in fact if you get the dosage correct there should be none!

I had a shoulder injury that was causing massive tension in and around the neck/jaw, got that treated with steroid injections and physio, and wear a jaw guard at night to stop my teeth grinding.

5-HTP (serotonin)with vitamin B6. I actually took this out of desperation for travel sickness, as pretty much every time I got in hubbys car Id get travel sick, which would kick off a migraine. I found a research paper from a few years go that linked Migraine and travel sickness with low serotonin. Figured it was worth a try…very surprised to find it stopped both the travel sickness and the migraines!!

All three mean Ive gone from chronic daily migraines since October last year, to two a week with the Magnesium/Shoulder treatment, and then down to one in the last 6 weeks after taking the 5-HTP (hormonal so not much I could do about it!)

TBH its all fairly trial and error. The migraine society have lots of info on it, but as someone else said above may well be worth trying to get off all drugs to see if theyre causing more trouble than theyre worth. Certainly were for me, and Ive found the ‘gentler’ less traditional pharmaceutical route far more helpful.

Other things Ive tried with no success, but that are highly rated by other people:

Acupuncture
Co-enzyme Q10 with vitamin B1
Feverfew

Theres a really good support group on facebook (if youre on there) where a lot of people share whats worked for them – ok, some of it is waaaaay off the mark for weirdos stuff, but always interesting to see whats working for other people that you can try, along with articles and info – Chronic Migraine awareness UK & ROI group.

Just to let you know, other than doing scans (MRI etc) around the head and shoulders if they suspect a structural abnormality, all a neurologist will likely do is give you medication. Best person to see is a pain management specialist, as they look at more underlying issues, but sadly going through the NHS you need to have been seeing a neurologist for a long time first 🙁 My neuro missed the issues with my shoulders completely, and shrugged off the sensitivity I was showing for medications, just telling me migraines make some people more sensitive than others, and to just keep trying till I found one that suited me. Thankfully I saw a pain management specialist for something else (trapped nerve in the abdomen), and she kindly offered to look into them for me as I turning up to appointments with my daily migraines!

Good luck in finding something that works for you, you have my sympathy, Migraines are pretty soul destroying, even at low levels 🙁 feel free to drop me a mail if you want some support from a fellow MTB chick sufferer, email in profile 🙂 x

anniison – thanks for all your thoughts and suggestions. I take magnesium citrate (heard that magnesium oxide is poorly absorbed), but only 200 mg per day. The other day I read that some people need 500 mg per day, but the bottle I have says 300 mg max. I’ve decided to try 300 mg and see if that helps. Can I ask what dose you take?

You need to be referred especially if it is cluster headache. There are other forms of headache out there that can be treated but you need to see a good neurologists some of these are not widely known. Getting an appointment is hard unless you end up in A and E. Be warned a neurological nurse is not the same as a neurologist – go figure. Some GPs still in the dark ages.

Drugs you listed are pretty brutal and not everyone can not tolerate them – especially duloxetine. They should be trying basics – amitryptiline/ nortriptyline etc.

If it’s migraine have they tried sumatriptan – short term immediate solution.
There are conditions that where paracetamol is liking eating candy – does nothing. Sometimes paracetamol is the cause of problem. We are one of the few countries that allows general access to paracetamol. Learn to de stress instead of the tablets.
GP won’t normally prescribe certain drugs unless told to do so by a neuro.
Hemicrania continua – don’t google it very depressing. Can be treated with old school anti flammatories.
Pregablin – again only prescribed by neuro normally. Be wary very difficult to come off.
Posters are right don’t neglect lifestyle – stress, bad food caffeine all triggers. Also get yours eyes tested even you have mild prescription it may be worth it.

Very sorry to here you are having a dreadful time Vickypea.

Some great insight and advice in the thread though. As a fellow migraine and cluster headache sufferer – who also experiences depression, there is some interesting reading here for me.

Vickypea: You need to take magnesium citrate to what’s called (excuse the grimness!) bowel tolerance, dosage is apparently individual. I started off with powder from capsules in 50 mg increases, and increased the dose until it gave me the runs, then took the dose back a bit to being normal again in the loo department! At first I needed around 500mg after a long spell of migraines, but that’s dropped and now find around 300mg is around my daily dosage. My tolerance can go up to around 400mg after a big bike ride, so I’ll have some extra after I’ve been sweating for 3-4 hours. That’s even with an electrolyte drink during/after, I seem to burn through it far too quickly! It does have the added bonus of being likely to help you sleep really, really well if you get the dosage right, lack of sleep is a big trigger for me, so it’s had a double benefit. If you’re low on magnesium it also stops you coping with stress as well as you might do. Stress activates your sympathetic nervous system (your fight or flight system), and your body uses up magnesium to activate the parasympathetic nervous system, which calms you down. Possibly another reason it works for us migraineurs when we’re stressed out!

Thanks anniison, I moved up to 300 mg magnesium citrate yesterday but if my bowel tolerates that dose, I’ll go up to 400 mg and see what happens!

Unfortunately our local neurologists now also reject referrals on a regular basis quoting “here are the nice guidelines, please follow them and refer back when everything has failed”
Gp’s are powerless against this type of God complex.

docrobster- I’ve also heard that and I do sympathise with neurologists to a degree, as a lot of migraines could be managed by a GP. I know that both GPs and neurologists are frustrated by having to give patients heavy-duty drugs because of the lack of research and development of treatments specifically targeted to migraine.

I would just blame the tories tbh vickypea. Plenty of money to throw at ridiculous notions like 7 day GP access but not willing to fund core services properly. NHS as political football and patients suffer.
Edit. Specialists always think that we refer everything to them. They have a warped view. Quite the opposite. 90% of contacts in the NHS happen in primary care, for <9% of the budget. Which is why it’s pretty galling when on the very rare occasion that you ask for a specialist partialist opinion, they decline to help.
If the average neurologist would spend a few months in general practice in their training they might appreciate all the stuff that doesn’t get referred to them.
Rant over.

You need to address root cause, as others have said. Posture / diet / stress / combinations thereof, but I’m sure you know this.

In the meantime; have you tried Omeprazole in tandem with things like Duloxetine? It should help / stop side effects like gastric reflux.

When I used to get migraines, the only thing that ever worked for me was Imigran.