Help

[Nonameavailable]

I just sat here and dictated a post probably as long as War and peace. (. I'm feeling a bit desperate). Then accidentally deleted it!!!!!

Has anyone had a prescriptive drug from the doctor that breaks the cycle of a kind of status migraine that has gone on for weeks.

I use Tiptons when I really have to. I was asked to stop the candesartan because GP thought it might be making my neck and shoulders sore although the pain pre dates candesartan or Botox .I struggled with the side-effects of the amitriptyline so have not taken the last two nights.

I get Botox.. 8 weeks since last jags.

I have way way more bad days than good days ,a bad day is not being able to move from lying in the dark on my right hand side.

A good day is surviving the essentials ...before lying in the dark.

I read on line prednisolone can sometimes help. I have been referred back to neurology but it will be at least 16 weeks before I hear about that.

I need something to happen now. So looking for information or advice for when I go to the GP. Or do I sit and cry until he gives me something, or do I just vomit on his desk.

I have tried a load of the strong drugs that they like to prescribe , but terrible side effects with absolutely no relief from migraine pain or after a lot of vomiting Trigeminal neuralgia.

Sad, sore sixty year old. Very desperate .

Got book suggested (headache. Healers handbook) impossible for me to read just now. Also impossible to type because of the pain in my neck and shoulders going down my arms and up my head so I am dictating and it doesn't like a Scottish accent so I apologise for any mistakes.

Look forward to a miracle

K

[Cally01]

Hi there

Sorry you have this aweful afliction 😔 .

Prednisolone always helped my migraines when i was given it for chest infections but you can't stay on steroid unfortunately.

Have neurology given you mertazipine yet?

Changing up my triptans broke my cycle i.e. sumatriptan injection then 2hrs later 1 rizatriptan melt.

You can only just try different things. It's aweful, not one thing fits all as you know.

I'm finally coming out of the migraine tunnel but it's been a 40yr slog.

💖

[Nonameavailable in reply to Cally01]

Thank you. I have rizatripan and also have a spare suma self inject stashed for emergency!!!! Do you mean mitrazipine? I have not , but worry if not coping with amitriptyline 10 mitrazipine 15 may floor me with side effects.My mother was the same , very drug sensitive

I read a three day burst of steroids tapering over the three days can help, tho not scientifically

backed. . I really think pain in neck area is primary cause and it is triggering me as I am chronic sufferer.I keep a diary for migraine clinic and it makes a very depressing read over the last 8 weeks.

My poor husband struggling to cope seeing me like this. Think in 35 years I have only known him to vomit 3 times. I keep blanket at hand to kneel on and keep warm for my intimate chats with the loo!!! I can't stand light or noise and he is a big put the lights on loud Scotsman!!!!!

[Cally01 in reply to Cally01]

No mirtazipine...I've pm'd you x

[Pippwin]

Poor you! I was in that state recently, and candesartan was the drug which helped. I also had neck pain with it ( my doc said there was no connection but I stopped the candesartan for a few days and the neck pain eased) but it has eased off now so I have continued it. I think I have also got out of the bad cycle by switching to using naratriptan. It's not so likely to cause rebound headaches. It doesn't work as fast as sumatriptan but worth trying to get out of a migraine cycle. Also I find that 3 aspirin dissolved in coke taken with domperidone can sometimes nip a migraine in the bud.

Regarding prednisilone the migraine clinic told my GP years back that I should have a few weeks on steroids when I need a to break the cycle. It does work ...they stop while you are on them. Then you need to gradually decrease the dose to come off them so that the migraines don't just come back.

I got the best help recently from the National migraine clinic in London having got desperate and little help from the Norfolk clinic. Worth travelling there and paying..you pay what you can afford and can pay a little each month to spread the cost. So helpful and kind there!

Feeling for you and hope you get some good help soon.

[Nonameavailable in reply to Pippwin]

Thank you Pippwin for advice. I do the 3 aspirin , but very caffeine sensitive.. me on caffeine is hysterical , then I get ill. Lol. I have not heard of naratriptan , I will google . Historically rizatriptan always been my most effective.

I was hoping steroids may help if a trapped nerve. Which would not be a surprise... past traumas (dangerous sports) the triptans are giving me limited relief , but only allowed 2 a week. And the-migraine will resume around 2.30am. I wondered if hypnic and if melatonin would help. GP

refused to prescribe. Too expensive. I offered to pay.

It's a never ending maze 😕

[Pippwin in reply to Nonameavailable]

It is indeed a maze and a mystery!

My 2 daughters and I all have migraine and all get neck pain with it. So I do think it's part of the migraine.

However, just to clarify, the candesartan made my neck pain worse for a couple of weeks. I decided to tough it out because it was such a relief to stop having the headaches so frequently and eventually the neck pain has become less intense. I only needed to take 2mg of candesartan to get a change in migraine pattern but of course I will probably gradually need to take more.

I hope your Gp let's you try a course of steroids ...all the best P

[Susannagrout]

You have my sincere sympathies. You poor thing.

Just an idea, but have you tried a TENS machine for you shoulders and neck? I have neck and shoulder problems that set off migraine. I regularly use one and I find it eases the pain by somehow massaging the painful spot. Whenever a get a twinge I pop it on at its lowest setting for a couple of hours. It helps me a lot. They are about £20 online or at Lloyds Pharmacy. Might be worth a try.

When I have those seemingly endless days of lying in bed with drawn curtains and a sick bucket, feeling so terribly ill, I listen to BBC podcasts which help take my mind off myself. There are audio books, documentaries, comedy. They are a life saver.

I know some people swear by a keto or low carb high fat diet but I found this too difficult though have reduced my sugar intake and have seen some improvement.

I hope you find something that helps.

[monster05]

I am very sorry to hear about all your pain. I suffered like you for many years. I had chronic migraine and would get about two days without migraine per month and they were hardly worth having because I felt so terrible and worn down. I had neck pain, vertigo and the most severe migraine combined with occipital neuralgia. I felt that life was not worth living and I don’t say that lightly. I was given four rounds of Botox treatment which improved things for me until the last round went wrong and I was left with occipital compression on top of everything else. Having said that, it did still help more than anything else had up to that point and the worst effects of the occipital problem wore off after the four months of Botox wore off. (I make that sound like it wasn’t too bad but it was four months of hell during which my husband had to do everything for me. They suffer too, don’t they?) I was eventually lucky enough to be asked to take part in a trial for the new CGRP drugs and my life has been transformed. From what I understand, these have been accepted for use by the NHS in Scotland. I would strongly recommend you give them a try. I have been on Ajovy made by Teva although there is another one by Novartis that is the most well known. I have gone from having to lie in a bed (propped up on my right hand side - like you - because of my neck and in a neck collar) in agony every day to having a light migraine once a month for which I take half a sumatriptan. I still have mild vertigo and a problematic neck and a few other issues but it’s a whole new world to not be in constant pain. I hope you find the help you need and that your GP will prescribe these new drugs for you if you are a suitable candidate because they are truly life-changing. Sending you my very best wishes x

[Nonameavailable in reply to monster05]

Wow... that sounds like heaven... and I totally understand... many times I thought if I was a dog I would have been euthanised. And I don't mean that lightly. 😢. I will hopefully fulfill criteria when I see neurology.I know GP won't/can't prescribe .But I also know that I can pursue things within NHS.thank you for hopeful post 🙂

I have been up since 8 and pain only 3/4 so trying to do all I can before/incase iit develops

Left eye twitching and eye and nose at Lt running....a bit of

of a warning

[monster05 in reply to Nonameavailable]

It’s definitely something worth pursuing. If you see a neurologist, they would surely be able to access this for you. I think most GPs haven’t even heard of it yet - I know mine still hasn’t. Mine was arranged through neurology. (It takes a fight to even get there, doesn’t it? It took me years to get referred to a neurologist- in fact, I had to pay for it and I’m not well off but it was worth it in the end because it got the ball rolling and they then put me back on the NHS. What a struggle it all is trying to fight for things when you’re not well.) I really hope you can get something sorted and have some relief from this horrible condition. Stay hanging in there. Best wishes x

[monster05]

I’m sorry - I think I’ve replied to Susannagrout but my post was actually meant for you. (See, the old migraine brain fog is still there. . . )

[Nonameavailable in reply to monster05]

Lol... Perhaps the fog never fully lifts😳. Although friends and workmates say to me

..."please never change" as they find my faux Pas etc a great source of mirth 😳. I have seen neuro in past.. he said... If head sore for over 2yrs, you're stuck with it.

I only got candestartan and Botox as I went to private neuro who also works NHS.shocking lack of support and expertise. And I work NHS nae perks for staff!!!☹️

[Chleo11 in reply to Nonameavailable]

Hello you! Sorry to hear that your head is giving you a hard time. I am not surprised that you are on amitriptyline. The drug is so cheap for the NHS and is given to everybody for everything. This is what I call a drug for horses and not people. On 10mg I was already so spaced out that the doc said I had to stop. I have taken nortriptyline, which is the same but much lesser side-effects. I've just started to take Naratriptan because the stuff stays 24 hours in the blood so much better for long-lasting migraines. I've taken it once at this stage and was quite happy with it. I was told that it takes a long time to work but for me it worked within 5 minutes (and I've had my migraine for several hours already).

Yes, I've heard the same thing about steroid, that they can help you break the cycle.

In relation to food, I have 'indulged' in a food intolerance test and it showed that I was intolerant to dairy, wheat, eggs and a few other things. I've been on the elimination diet for 2 months now and I had huge success for some health's concerns I've had most of my life but, you've guessed it, not the migraines. I believe that, except if you have a terrible life style and eat junk food all day long, there's not much relation between food and migraines, except when you have been able to see a direct link several times between something you've eaten and the migraines. But it is just my humble opinion.

Wish you all the best. Keep us posted on how things are going for you.

[Nonameavailable in reply to Chleo11]

Thank you Chleo.

I Def find environmental factors waaay more of a trigger for me, but def some foods I need to avoid, and when in a cycle that seems to expand to other"suggested" triggers.

Also find it hard to hydrate when more seems to come out than goes in!!! lol what's that about?yesterday was so much easier ,so at least a little respite. What doesn't go is crushing temple and jaw pain/discomfort , tho I can function fine with that.

Thank you for taking time to reply. The only help is having contact with people who have lived the hell of a migraine.Its such a lonely place. Friends don't always understand why you can't dothe cinema or the concert or the sauna ...blah deblah.

Hehe hi. Just gotta focus and embrace what we can do and gently grieve the things and people that slip away..

[Headcased]

Hi ,

All I can add is a decent dose of pregablin...... (300mg) on top of the propranolol and botox X5..... bloody hard work getting on, dreading getting off, it was nightmare with gabapentin after spinal surgery.

Dunno whether it helps, but I know I'm 'comfortably numb' for most of the time.

It's the visual vertigo that tips me over the edge , along with sudden drops in barometric pressure.

Windy North West coast isn't the ideal place, that's for sure.

[Nonameavailable in reply to Headcased]

Do you think somewhere on the planet there is a migraine Island where the temperature and the light and the heat and air pressure are all perfect conditions ?

I'm in SW Scotland soooo wet and windy here. And when I wear a balaclava even at 60 I look like a thug!!! Lol

[Headcased in reply to Nonameavailable]

Ha,

Sunglasses and a hoody ALWAYS here,

Being just outside Liverpool I fit right in with the Scally wildlife..

Trouble is, I'm a middle aged countryman!

[Mia51 in reply to Headcased]

A please don’t take pregablin again,it’s now a classic drug.unknown to me, my son is not with us now because of this addictive drug.

[Nonameavailable in reply to Mia51]

I am so so sorry to read this.I cant begin to imagine the loss and pain you are living with.

K

[Mia51 in reply to Nonameavailable]

Thanks for your thoughts,my last post doesn’t really make sense.trouble is it’s only been 8 was since I lost my son,mainly preg addiction.I also live in sw Scotland and like you been demented with migraines all my life.xx

[Nonameavailable]

Been on pregabalin and gabapentin ..... Twas messy . apparently hysterical to watch BUT did not help migraine.

Honestly I'm embarrassed when they list off meds tried.🤦🏻‍♀️. One GP said "people like you, just have to live with it" he then said "if you were not so med sensitive I guarantee I could have cured you"

I then went private and sent letter to surgery about his attitude.

[Headcased]

Pregablin is not a bad place to be.....

If you're a selfish singleton without any responsibility.

However,that not being the case,

Tis a reet bugger!

My Neurologist at the Walton Centre is an expert at headaches.

She says it's just a matter of finding the right combination........

Six months a go is nowt else n their world....