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National Migraine Centre

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beckywebb04 profile image
14 Replies

Hi everyone! I'm new to this forum, but unfortunately I'm not new to having migraine. I had them throughout late childhood and adolescence and it stopped when I was about 16. At that time they were controlled with painkillers and metoclopramide, however I'm now 20 and the migraine is back with a vengeance! Have tried naratriptan which worked once then gave up the ghost. Today I've been prescribed sumatriptan and changed back over from the combined pill to the mini pill, however my gp has also suggested beta blockers if the triptans continue not to help. I also have seronegative rheumatoid arthritis. I'd like to know -

What are everyone's experiences with triptans and do you find a particular one more effective?

What's your opinion on beta blockers for migraine, especially at a young age?

And last but not least, does anyone else also have an autoimmune condition as well as migraine?

Sorry for the long post but I like to be well informed!

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beckywebb04
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14 Replies
MaryF profile image
MaryF

Hi there, due to your history of sero negative RA, and migraines since childhood, please do the blood tests for Hughes Syndrome/APS just to rule it out, not saying you have this, but it often occurs with other diseases such as you mention or a family with varying autoimmune diseases including Thyroid problems and a history of migraines and or miscarriages. Do the blood tests at the local hospital as it is good for samples to hang around for to long in a GP surgery: hughes-syndrome.org/about-h...

Despite the disease having been discovered over 30 years ago, and recently subject of a Horse of Lords Debate, it is often still missed, particularly so by neurologists, although thankfully this is beginning to change. Should you get any positive test results, please come back to me as I look after the patient forum for Hughes Syndrome Foundation

MaryF

babs1234 profile image
babs1234 in reply to MaryF

Hi Mary I was due to go for my HS blood test next Tuesday but have just received a letter postponing it to 16th Nov. I'm fuming as I've already waited weeks. I am going to ring the hospital in the morning with my complaint and hopefully they will bring it forward.

MaryF profile image
MaryF in reply to babs1234

Be firm and worried rather than too angry with them, I sure they will help you, as it seems far too long for that.....sometimes you can get a cancellation slot. MaryF

babs1234 profile image
babs1234 in reply to MaryF

They have now bought it forward to the 27th of October and will call if they get a cancellation. Can't wait to have it done as the aspirin is starting to irritate my stomach

X

MaryF profile image
MaryF in reply to babs1234

Oh dear, are you taking the Aspirin on a full stomach? and if you get to the appointment and you and they are still concerned about this irritation, there is an alternative, 'Plavix' which suits some people better, however they may not prescribe that and decide on a different approach, hope it goes ok. MaryF

Zara-LouiseD profile image
Zara-LouiseD

I find the zolmitriptan nasal spray the most effective - it gets into your blood stream quicker and lasts longer......although I do get migraine back next day and have to take a second dose.

It's not without side effects - for me I get yawning, hiccuping, feel like I'm bruised all over, nerves in mouth are alive etc. When I first started taking it I used to feel like my throat was swelling up and someone was sat on my chest but these are all known side effects and apparently acceptable lol....... Certainly better than the pain of migraine!

My doctor has to order this in specially as its not something they usually stock, so you may have to ask for it if you want to try it?

Claudie4 profile image
Claudie4

I find 50 mg of sumatripiptan + 3 325 mg of aspring do the trick for me. Mt Dr. Said 3 asprin is a new study. Good luck. I also take amayriptilone at night to break up the headaches. It is working.

Previously I had to give myself injections. I am having fewer headached.

Good luck to you.

Ceedee profile image
Ceedee

No success with beta blockers as blood pressure is too low. I took pizotifen for several years as a preventative which really reduced the frequency an severity. Mine are hormonal, so began again when I started using HRT ( so I am quite a bit older than you !!! ) hope the beta blockers help you, sumatriptan usually kills mine, but need several days each attack, also leave you a bit spacey .xx

Birdmomsusan profile image
Birdmomsusan

(Disclaimer: I'm not a doctor, just a migraine patient like yourself. I do not have an autoimmune condition.) Sorry to hear you are suffering with migraines. The beta blockers are a preventative medication which you take daily. They worked for me for a time but my body habituated and we had to change medications. They serve a different purpose than the triptans, which are a migraine abortive medication (to relieve migraine pain once you have the migraine.) Personally, sumatriptan is the triptan which works best for me but you will have to experiment. If you have 15+ migraines per month, you might consider Botox for migraines. Finally, there is Cefaly, which is an electrical stimulation device clinically proven to reduce the frequency of migraines. (Mine arrived yesterday and I've only used it once so can't report my results yet.) Good luck to you!

babs1234 profile image
babs1234

Hi I was on amitriptilyne which helped for few months. Now I take immigran on first sign w but you're not supposed to take more than 2 a week which isn't much good when you have 7 day clusters

Pvancourt profile image
Pvancourt

Sorry to hear about your migraines. I have suffered my entire life with migraines so I understand your pain. I do have an autoimmune disease called Behcets.

Try not to use pain meds more than a few times a week at the most. The Triptans worked for me however I have a brain aneurysm so I can't take them now. We are all so different in how our bodies react to meds...there are many options out there. I hope you find something that works for you. Good Luck!

Gambit62 profile image
Gambit62

My migraines are hormone related.

Rizatriptan generally works for me but I take very small doses - 1/4 to1/8 of a wafer rather than a whole wafer - in high doses they can actually make the migraine worse.

Keeping my B6 levels good also helps - not really with the headache but with the gut spasms that can be the worst aspect of my migraines. Had a stand-up throw-up one last week that was really awful though generally that only happens once ever 6 months.

I found beta-blockers worked on the migraines a bit - was given them for blood pressure - but it stopped after a while.

I've also used sumatriptan - needed more but it lasted longer and zomig - the nasal spray - which in some respects was the most effective but ...

Other things that help me control mine are: running.

They got worse for a while when my B12 levels got really low (have an absorption problem - and migraines are one of the symptoms of a B12 deficiency - so worth getting that tested if HS blood test doesn't show anything ... though the test isn't specific and needs to be interpreted in light of clinical symptoms rather than the pure results ... but most GPs aren't aware of that.

You can find a fuller list of symptoms of B12 deficiency here just in case other things ring a bell.

pernicious-anaemia-society....

Sahara3 profile image
Sahara3

I have suffered both hormone and stress migraines for over 30 years. I have tried variety of preventatives (amitriptyline, beta blockers, topiramate - which all worked for a time, and some others which did not). I have talked to people who say that a combination of beta blocker and amitriptyline works for them. After spending 1-2 weeks a month totally incapacitated by the pain and vomiting, I finally had a hysterectomy and my life completely changed and I could function as a normal working person again. However, the stress migraines do still occur, and I am back on amitriptyline (20mg/day). I still get minor migraines and take 3 aspirin/paracetamol/caffeine tablets followed by almotriptan (12.5mg) as I have found this generally works. If it persists I will then use a zolmitriptan nasal spray. These make me feel quite nauseous but they do seem to work. I will only take one dose of each in 24 hours but the combination does seem to stop a full-blown migraine, and I can generally carry on working. I have come to these combinations after trying many different triptans and painkillers, including cocodamol, tramadol, diclofenac. (I may still use these in the case of a full blown attack).

So my advice is if something is not really working for you ask your GP for another type of triptan or preventative. Being able to live with the side effects of the preventative is also important, as they all have some.

Sadly, adapting your lifestyle to avoid triggers is necessary too - I have had to give up alcohol entirely as the pleasure is far outweighed by the pain! I also cannot get too overtired, so early nights are a must; I have to try not to cry at sad films and not exercise too hard if I am at all tired. But this does mean I have fewer attacks even if it is a fairly boring life (according to my children!)

beckywebb04 profile image
beckywebb04

Thank you everyone for your help and advice! I will definitely mention some of these things to my gp. Unfortunately I have no idea what triggers the migraines and I already avoid caffeine and alcohol, they also don't seem to be hormonal. It's so frustrating not being able to control them

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