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Any migraine sufferers out there? Having a horrible time..

(28 Posts)
WalkThePlank1 Tue 22-Oct-19 10:51:20

I've suffered with migraines since I was a child but since having my DS 3 years ago I've found they've gotten worse/ my ability to cope with them is less.
Last Sunday I had an attack so bad my partner took me to A&E. I felt like someone had hit me in the head with an axe. The pain was in the back of my head and my neck as well as at the front of my head. The only other time I've had an attack that bad was a couple of years ago. I had a CT scan and a lumbar puncture back then and everything was clear so this time at A&E they just treated it as another severe migraine.
Since then I have seen my GP who has prescribed me some more rizatriptan to take when a migraine occurs and amitriptyline to take as a preventative medication.
I'm quite hesitant to take the amitriptyline as I don't know why but I'm scared to be on long term medication.
I also didn't want to have to take the rizatriptan as I get worried about rebound headaches but this morning I woke up with a headache that was rapidly getting worse so I took a rizatriptan which has gotten rid of the headache but left me drowsy and with brain fog.
Im feeling really anxious and scared constantly to get another attack. I'm scared when the rizatriptan wears off the headache is going to come back. I'm scared I'm taking too many painkillers and am going to have rebound headaches.
I think I will start the amitriptyline tonight as I don't want to go on getting these headaches.
Has anyone else taken this and had success? Does anyone have any tips for dealing with migraines/ preventing them.
It's becoming next to impossible for me to look after my DS as I'm having them so frequently and so painfully.

Sorry for the very rambley post. I'm just so anxious about getting another attack that my heads all over the place.
Thanks for reading if you made it this far. Any advice appreciated.

OP’s posts: |
Kcoffecakebubs Tue 22-Oct-19 11:18:11

I completely sympathise. I've suffered with migraines since I was around 13, luckily since having DS 6 months ago they seem to have stopped (touch wood!). I have read that some are hormone triggered and can change after a pregnancy.

I was also prescribed triptans before I was pregnant and found it was 50:50 if they worked. I was never on the preventative though so can't help there. I also got prescribed anti sickness drugs they give for people having chemo to help the sickness.

Do you get migraine with aura? I did and found the best cure was a dark, cold room. Fortunately my employer was very good in allowing me to take screen breaks and work with the light above me off, that really helped.

I know others that have suffered really bad, and there are many different types of triptans, so your GP could try you on others too, see if any suit you better if you don't want to be on the other meds.

Sorry not exact answer, I know there quite delibitating. I'm actually scared I'll get one now as not sure I could actually look after the baby when I can't see!

AllTheWhoresOfMalta Tue 22-Oct-19 11:27:42

Mine also got worst after having kids. I’ve had diath piercings which have made some difference, as has taking a high dose of anti sickness medication. Please keep pushing your GP, there are other options. It’s the absolute pits.

VolcanionSteamArtillery Tue 22-Oct-19 11:31:02

If you get throbbing pain try ice packs. They can reduce blood flow and ease the throbbing

MellowMelly Tue 22-Oct-19 11:32:00

Has the doctor tested your B2 levels?
I just wonder because my daughters B2 runs low and since she’s been taking a B2 (riboflavin) supplement hers have significantly reduced.
Just a thought as there is a link between low B2 and migraines.

OtherMoons Tue 22-Oct-19 11:33:24

Another one here who has had them much more often since having kids, or maybe just since getting further into my 30s. A year ago I was having them daily with various levels of severity and taking ibruprofen all day every day. Have been on beta blockers about 6 months now and they are less frequent and less severe, I will have a bad week of them around ovulation and a medium-bad week before my period and not many migraines in between.

OtherMoons Tue 22-Oct-19 11:34:26

I also tried coenzyme Q10 and magnesium supplements for 6 months before going to the GP and getting the beta blockers but all they did was drain my bank balance.

AwdBovril Tue 22-Oct-19 11:39:22

I also get a lot of migraines. They started in my early 20s, am now late 30s. I'm on preventative tablets, amitriptyline (for chronic nerve pain which is an aftereffect of my migraines) & botox injections. I also watch what I eat as I have a lot of food triggers. Suggest you keep a food diary for a couple of months, log everything, including how much water you drink, also how much / how well you sleep. And your periods.

If cold helps, try that. Although I get 2 different types of migraine - for one, cold is helpful, for the other, it's warmth that is better - I often sleep in a beanie hat!

AwdBovril Tue 22-Oct-19 11:44:53

You can get very cheap magnesium supplements if you're willing to put up with the first 6 months or so of increased windiness that is caused by magnesium oxide. Much cheaper than other magnesium supplements. I've used it for a few years now and it doesn't cause me any trouble at all any more.

But @OtherMoons is right about the CO Q10 - very pricey. I saw more improvement from the magnesium, for a fraction of the price.

I buy a high dose B complex from H&B, when it's on offer.

WalkThePlank1 Tue 22-Oct-19 12:25:57

Thank you so much for your replies. It helps to hear from others in the same boat.
I'm finding that I have no one around who understands how debilitating it is. My DP is struggling with it as he's had to take a lot of time off work recently to help me with DS when I have an attack as all I can do it lie in bed in a dark room and vomit.
I've not been tested for anything I don't think. A&E took blood tests but I think that was to rule out meningitis and serious things.
Today the triptan has worked for me as I don't have a severe headache any more but I do have some pain in the front of my head around my eye brow that keeps moving to different sides of my head but at the minute it's managable.
I think the main thing I'm suffering with is the anxiety and fear that it'll happen again soon. It scares me as I'm on my own with DS and I have no idea how I'll look after him if I get one. It's a bit of a vicious circle really as I worry about getting headaches and worrying gives me headaches.
I did think about trying cheap vitamins and supplements as it can't hurt to try.
I'm still hesitant to take the amitriptyline as I don't know what side effects I'll get from those but at the minute anything seems better than another migraine.

OP’s posts: |
Lowbrow Tue 22-Oct-19 19:27:26

Try pressure points. You need to get someone to stand behind you while you sit on a chair. Get them to press hard with their thumbs on the spots on the top of both shoulders where your neck and shoulders meet. It’s the dip on the top of your shoulders. Pressing hard for a few minutes, it hurts a bit but also gives fairly quick relief, it’s a funny feeling.

There are also other pressure points you can google for migraines. It seemed a miracle to me when someone first did it for me. One time I had five migraines in six days, I could stop them with medication then they would start up again.. The pressure point remedy works for about a year in my case.

My DD also had migraines and headaches other days for years caused by a medical condition, the pressure points didn’t work for her. She was prescribed Lyrica which made it worse and she ended up in hospital from the pain. She then had awful withdrawal symptoms getting off that prescribed drug. She now takes good quality cbd oil which is also amazing.

Rumboogie Tue 22-Oct-19 19:34:39

I had this. The migraines were so bad and frequent that my whole family were revolving around them. We could not accept invitations, entertain, even kid's parties were hit and miss. My DP frequently had to drop everything and step into the breach while I was sick with a humungous 3 day migraine.
I saw a neurologist who started me on Topamax. It changed my life - not only stopped the attacks but made me feel wholly normal in between. I had not even realised I had not been!
I still get the occasional minor breakthrough, but sumatriptan stoppes it with no side effects.

breakfastpizza Tue 22-Oct-19 19:57:45

Have you ever tried Methocarbamol? It's a muscle relaxant, often paired with ibuprofen. I think you have to get it on prescription in the UK, but it's sold OTC in other countries and considered non-addictive. Works a treat on stubborn migraines for me.

WalkThePlank1 Tue 22-Oct-19 20:03:35

I'm GP has told me to try the amitriptyline before he will refer me to a neurologist so I think I'll have to give it a try. Pressure points is something to look into. I just hope I can get it under control soon. Feeling very guilty about the impact it's having on my DS and DP.

OP’s posts: |
TwistedFairytales Thu 24-Oct-19 08:47:13

Hi i can sympathise. I get them too. They dominated my life for a good few years until i realised they were actually a physical manifestation of deep rooted anxiety. Ince i started treating the anxiety, they significantly reduced. I do get them still, especially after periods if high stress or worry, but nowhere near as much or severely. I now do yoga and meditation to help....Possibly something to consider.

WalkThePlank1 Fri 25-Oct-19 02:33:12

I know that getting anxious/stressed is one of my triggers. When I started a new job I ended up having a migraine every day for 3 weeks. I had to take so much time off sick. It was awful. So could definitely be due to underlying anxiety.

OP’s posts: |
triballeader Fri 25-Oct-19 15:26:56

I think it may be time to dig in your heals and demand your GP makes a referral to a hospital headache clinic.

Arm yourself with a headache diary as that will demonstrate how migraine has been taking over your life. Difficult to control frequent and severe migraines are a good reason to be reffered.
A headache clinic will help by reviwieing all your drugs, the type of migraines you get and if you might have any additional forms of headache disorders that may make the picture a bit more complicated for a GP to see. I recommend the charity Migraine Action and some have found the Migraine Buddy 'app a useful way of tracking migraine. You can use it to show your GP too.

My GP no longer manages my chronic migraine and cluster headaches. I am managed by specialist team at Hospital as it became clear in my case they are too complex for GP management. Up to that point I thought I was the wuss who struggled to cope with 'just a headache'.

campion Fri 25-Oct-19 18:17:44

I agree with triballeader. You really need to get some specialist help that is specific to you.

Migraines are miserable, unpredictable and often misunderstood, and what works for one person doesn't always work for another. I could bore you with my experiences/medication(s) but it'd be unlikely to help.

Yes to a Headache clinic.If there is one in your area ask for a referral; if there isn't, ask to be referred out of area. Migraine Action no longer exists but The Migraine Trust does and it has a useful website and they also have an information service.

WalkThePlank1 Fri 25-Oct-19 18:28:22

Thank you all for your suggestions. I had another one last night that left me in bed from 6pm. Luckily I managed to fall asleep and felt a bit better when I woke up around 1am.

I have asked my GP to refer me to a headache clinic or neurologist a few times but he keeps refusing and prescribing me different medications to try first. He said he neurogolist will just do the same if I haven't already jumped through those hoops before I get there.

OP’s posts: |
Pinkpercy Fri 25-Oct-19 18:41:49

Bless you, they are horrendous and not many people understand or empathise as they compare it to a headache (which is bad enough in my opinion!).
I’ve had migraines for about 10 years and only just got input from a neurologist. I didn’t get to see them, they wrote a letter to my GP with suggestions. Here is a list of what I’ve had and the outcome:

Rizatriptan - good for a few months but stopped working. Drowsiness at the beginning but wore off.

Sumatriptan - brilliant and still take but does cause lethargy

Zolmitriptan- also brilliant but sometimes doesn’t work no side effects though!

Pozotifen - crap

Beta blockers - crap

Amitriptaline - put on 1kg in 2 weeks and severe drowsiness

Topiramate - made coke taste flat and awful.

Gabapentin- I’m currently taking and have gone from daily migraines to about 4 a week so some improvement. Haven’t reached max dose yet though so still hope lol. Drowsiness and drunk sensation at times but better than pain!

I’ve tried quite a lot. Keep going back to your GP if you feel bad, the squeaky wheel gets the grease. It’s awful to live with severe pain, don’t let them fob you off.

I wish you the best of luck and please let us know if you find something that works!

WalkThePlank1 Fri 25-Oct-19 19:03:55

@Pinkpercy

Thank you for your reply, it was really helpful.
I have heard about amitriptyline making you gain weight which is another reason why I am hesitant to take it as I have already gained a lot of weight as I have been eating a lot more than usual for fear of getting a migraine if my blood sugar drops to low! It's awful. I keep trying to change my diet but as soon as I try it triggers a migraine.
Before I had my DS I changed my diet to a very healthy one and I remember having 3 weeks of daily migraines before my body adjusted. After that I actually had fewer migraines, possibly because of the diet.
But after having my DS everything has changed and I find it very difficult to get back to where I was.

Rizatriptan has been working for me but definitely gives me drowsiness and brain fog! But it's definitely better than pain!

OP’s posts: |
tangledyarn Fri 25-Oct-19 19:05:12

I really feel for you. I think you are right to try the amitriptyline. For a lot of people amitriptyline or nortriptiline are pretty good and neurology may not see you until you have tried at least 2/3 preventatives unfortunately. There are also 7/8 different triptans which apparently work slightly differently so if one doesnt work its worth trying another. things you could try that are not medication are high dose magnesium and b2 and a cefaly device. I've had a total nightmare for the last 5 years having basically a migraine everyday. The combination of gabapentin and botox has probably helped the most but am now back to drawing board looking at next steps. Anxiety/stress really doesnt help but its obviously a cycle, as its totally understandable to be anxious when feeling so unwell but relaxation, mindfulness, massage and having lots of rest do help.

triballeader Fri 25-Oct-19 22:38:33

For your info in the hope it will to with asserting your need for a specialist's review. These are the 'hoop's. GP's are supposed to follow the BASH Guidelines here www.bash.org.uk/guidelines/ and NICE guidelines for adults with migraine here cks.nice.org.uk/migraine#!scenario

campion Fri 25-Oct-19 23:08:58

If you can afford it,ask for a private referral to a neurologist. They'll transfer you over to the NHS afterwards and it does speed things up.
Your GP is being unnecessarily obstructive - it's not as if his professional care has been effective so far, has it? I'd be looking for a new one.
You need some specialist help,not an endless pick and mix of drugs.

juliastone Fri 25-Oct-19 23:31:37

I have migraines with aura (can't speak), they started when I was about 30. After trying all kinds of strong small pills prescribed by neurologists which only made it worse and going through all kind of tests.. one doctor asked me - have you tried aspirin? Ever since I would take one aspirin when I notice the first signs (flashlights, blind spot in the corner of an eye, numbness) and 95% of the time I would avoid the migraine. It would be a strange day with heavy head but completely bearable.. It really changed my life. And it's just aspirin.

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