Migraines everyday, all day, for 9 months. Help!!

I wonder what meds you have actually tried?  Life for me can be pretty miserable too, getting intense cluster headaches waking me at night and like you I am very light sensitive at times.  I also have Hemaplegic Migraine and this usually hospitalises me.

I want to te tell you what I have had some success with.  For cluster headache I have sumatriptan injections when I have an attack.  For preventative I take Pregabalin and verapamil.  For the HM I have Flunarizine and Botox.

Hope this helps

Thanks for your message!

Glad you've found a medication that helps you.

I currently take Rizatriptan and Imigran injections and then do help a lot but sometimes if I take it too late, I don't find it effective.

Please do not give up living your life, it will get better!

I'm better than I was when I wrote the original post around 3 years ago.

Haven't found a reason for my migraines, and haven't found anything that gets rid of them completely.

I am now seeing a specialist at the Walton Centre in Liverpool instead of a neurologist at my local hospital. They've put me on tablets called Candasartan now, which is a blood pressure tablet. I'm up to 6mg a day, but it's really helped. I'm still getting headaches but the times I'm having full blown migraines is fewer.

When I'm in pain, I try to avoid tablets that contain codien in them, and only take painkillers when really needed.

When the pain is worse, I take tablets called Maxalt Melt (tastes awful but really helps when taken at the right time). And if it's a full blown migraine then I have Imigran injections. Sometimes I find the side effects of the Imigran is worse than the migraine so I try to avoid these where possible.

My life has improved massively since being on this medication. I can actually go out and have a life now instead of being in the house all the time in pain. Or worrying about what I can go out and do.

I hope this helps you figure out some possibilities for your migraines.

If you feel like your doctor isn't listening to you, get them to refer you to a migraine specialist. I had a right nightmare with my normal neurologist because most of them don't understand migraines, they don't get the pain from them.

I really hope this offered some help, but if anything some support. There are so many people following this thread that will support you, so please don't feel alone.

Becky.

Just read your post, I am interested to read the additional symptoms you have, facial numbness, tingling etc, these symptoms are also the start of anither type of migraine that I have, Hemaplegic Migraine and let me tell you some meds and treatment that have helped me.  I take Flunarizine at night and i have regular Botox injections, which is a recognised treatment for migraines, so you might want to discuss this with your neurologist.

Hope this helps, good luck

Thanks for the reply. Im sorry to hear that you havent got over this, even after 3 years.

Do you still have them all day, everyday but they are less severe, or do you have some days where its not there at all, and some days it is back?

Also, have you noticed certain things make it instantly worse? E.g Alcohol ?

How does your family/partner feel?

I feel no one understands - everyone wonders why im in a bad mood all the time, and never want to do anything or go anywhere, im guessing everyone else going through this feels this way too?

Have you, or anyone else reading this gone to chronic pain managment classes? im wondering if this will be benificial.

Its comforting to know other people are going through the same thing! I will definatly ask to be transfered to an actual mirgraine specalist and suggest the medication you have mentioned!

Thanks alot for getting back to me!

I have heard about this migraine- but the thing is,I dont get weakness in my arms or fingers - just my face, can sometimes feels like its drooping.

What other symtoms do you get, and do you have your migraine constantly? Mine has literally been all day, everyday for the past 14 months (sounds to dramatic and exaggerated - but true). Also, how long have you been having these heachaches, do you they get better over time?

Sorry for so many questions, its good to finally talk to people that understand!

I think my next step is going to be the botox. How is this to have? I read you have around 38 injections? Would totally be worth it if sorts the migraine out though heh?

Its ok ask as many questions as you like.

My speech is very slured and I am really confused.

Last year I was getting HM every other week and hospitalised  due to the similarities with a stroke.

I would have to have physiotherapy to relearn my brain to communicate with the left side of my body.

I get considerable eye pain and very photophobic.

I have been having them for about 3 years now, but last year was the worst and they are made worse by stress and worry.  Last year my Mum died so you can imagine how it was.

The Botox for me is definitely a Godsend but not 38 injections around 12 I think.

The last time I was in hospital was January and not had one since.

I also get cluster headaches, which if you research this condition, used to be known as the suicide illness as nothing could take the pain away.  Thankfully now there are meds to do that.

Get in touch anytime Amber, always happy to help

I usually have some sort of pain all day everyday, but sometimes it's so small that if I distract myself enough, I hardly notice it. Then other days, it's like a truck has run over my head.

Today is a bad day though. Here in Blackpool we've had a very unusual period of nice weather, and as great as that is, my head is pounding coupled with the nice weather and hay fever. I'd love to go home and sleep it off, but unfortunately I need to be in work today.

I find a few things make it worse, but still haven't found a 'trigger'.

Alcohol; loud noises, flashing lights, lack of sleep, hot weather, hay fever are the main ones.

I have been a lot better since going on Candersartan, I want to try and up my dose but the GP won't let me. Apparently my blood pressure is low anyway, and if I increase the meds it'll drop too low and I'll be passing out everywhere.

My family hate seeing me like this, though it's better than where I was 3 years ago.

My mum and all 4 of her sisters have some sort of migraine/cluster headache but none of them have ever had it like I do. My auntie has cluster headaches frequently, but never 24/7 like mine.

Have you noticed any triggers? Or anything that makes it worse?

Does it run in the family?

Hope your doing alright,

Becky

I see. I really do wonder if we are going to be like this for the rest of our lives? I constantly think to myself what kind of life is this to be in pain everyday, i just dont see a point.

I feel some out doctors/neurologists in London play a guessing game. I asked my doc yesterday to be transfered to an actual migraine specialist and he told me there is no such thing, and all neurologists are migraine specialists?

I have literally just started on Candersartan yesterday, so fingers crossed they have the same effect on me as they did you.

I cant say i have any triggers, as the headache is constant, but i find that Alcohol makes it instantly worse. Also if i do any physical work like going shopping or cleaning my car.

Being at work makes it worse as im sitting on a computer all day 5 days a week. Any bright light is painful as my eyes constantly have a sharp pain in them.

My auntie is the only one in my family to get them, but hers come and go, not constant.

This frustrates me so much, there has to be something thats causing our constant headache - this isnt normal!

What do you do for work if you dont mind me asking? Have you had to change you job in anyway cause of your headache?

Wondering if you have tried seeing a Chiropractor too?

Amber x

Just been reading your latest post and I see you are at a computer all day.  I am sure they have special glasses you can get to filter the light and you should acording to health and safety take regular breaks from the screen.. your company should pay for eye tests too!

I agree about the bright lights being so painful to the eyes and of course headaches do cause a significant disruption to our lives, I try to put it into perspective though and realise that there are others who are a lot worse off.  The meds help us control the headaches and maybe in time we will grow out of them, lets hope hey!

Have you used a chiropracter Amber, I find Indian head massage is very soothing.

With regard to a headache specialist, there is one!  At the National Neurolgy hospital, Queens Square London.  Get your GP to refer you to Dr Matharu.

Have you tried Sumatriptan to deal with the pain and Pregabalin to control it

Best wishes

Thanks for coming back to me

Ive had an eye test roughly 8 months ago and came back all fine, though I think I may go again soon for a second opinion.

Working at a computer all day is probably the worse thing to do with chronic headache, but its a good realy good job, and I wouldnt know what to do for work otherwise.

Its true, there are people out there who are worse off, saying that it doesnt make the headache any less painful and frustrating . I feel I have no life. Would love to finish work on a Friday and have a few drinks with friends or my partner to relax!

How old are you if you dont mind me asking, does your headache stop you from doing things?

I currently see a chiropracter 3 times a week for adjustments, he seems to think my headache is because my neck/spine is out of line - they have given me a hard block to lay on for 20 minutes every evening so have been doing so. They said it will take about 2 years to get my neck back to how it should be. Im going to give it 6 months to see if there is any difference, if not I shall rule it out, and its not cheap at all!

Dr Matharu, can I see him through the NHS or will this be private?

Im going to try acupuncture next, but im running out of options.

Youve had botox, did your neurologist refer you? I think im going to give that a bash. Its nice to hear youve found some relief. Did you get releif after your first treatment?

Amber x

Your GP can refer you to Dr Matharu, he is the country's headache specialist, and its NHS too.  Once you get in they have a specialist headache team that you can phone or email anytime to tell them whats working and whats not.  They do the Botox there.

My headaches nromally wake me up in the night and I have to have an injection, once it goes I am fine usually most of the day, but as you can imagine with disturbed sleep its not the best,

They can give you different kinds of injections, not just Botox, so its well worth nagging your GP to refer you to Dr Matharu at Queens Sqaure London,  He will order different blood tests and scans too.

Good luck Amber and yes I agree, when the pain is bad nothing else matters but us who have it and getting rid of it as quickly as possible is priority,

Keeps us updated

Take care

I asked my Doctor to refer me to Dr Matharu and ive been advised by his secrutary that he doesnt have any appointments until next year. How often do you see him, and how long did you have to wait? I really do feel helpless, I dont know what to do anymore, I want to give up !!

I am sorry there is such a long wait to see Dr matharu.  I first saw hime privately which I get private medical insurance from my company so for this I am very lucky and grateful I know.  I see him on the NHS now as I had to see him so much the insurance company refused to pay anymore, so because I was seeing him privately to start with he fast tracked me in the NHS system.

Please dont give up, firstly get on his system so you actually get an appointment, next thing is I can give you the phone number of his specialist headache nurses and explain to them you are at your whits end with your headaches, and that Dr Matharu has no appointments until next year.  They may be able to talk to Dr Matharu and also give you some advice.

If you want there number of the nurse I call, I can let you have it, but please send me a private email please, I dont want it going public.

Also please give me more details about your Migraines and what you are taking at the moment, I may be able to suggest to you some things what your GP can do while you are waiting to see Dr Matharu.  Just to get some sort of quality of life Amber, will make a huge difference to you.  I am sure I can help.

Best wishes

Take care, I will wait to see if you want to private message me

I had a migraine for 9 months and they finally went away, I know the feeling of wanting to give up but please stay strong. There is hope to getting rid of these. Try to not stress at all about it or it's just going to make it worse, I know that's hard.

Have you asked your dentist if you're grinding your teeth in your sleep?

Have your tried a mouth guard?

Please don't give up!!

Hi Personal

Sorry for the delay in getting back to you, I have spoken to someone called Akwinder, which I think is his secretary but I may be wrong. Please can you provide me with the details you have?

I am currently on Candersarten, but havent had any relief. I have been on Amitryptiline, nortriptyline (appologies for spelling) and propranolol. I have had nerve injections which I fould no relief.

I have had facial numbness/tingling for about 2 years now, Sometimes feels like the muscles in my face are contracting/being pulled. It can sometimes feel as if my face is drooping, but physically its not.

My headache started end of March 2015, and hasnt gone away since, it feels like very tight pressure in and all around my head, my neck and top of back are always aching and sore. I also get sharp pains in my head. I get eye pain almost daily. I have had constant ringing in my ears/tinnitis since May 2015 too. My scalp also sometimes feels like its burning/tingling.

It stops me from doing anything. It ruining my life, and considering no one can advise me if/when its going to get better I cant help but think what is the point in living?

Sorry to be so depressing I just cant see a light at the end of the tunnel!

Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

Hi Dereck

Thanks for getting back to me

Did you ever find what was causing yours, and how would you describe your migraine, was it 24/7 for the whole 9 months?

Yes, I got a mouth guard from my dentist, but didnt make any difference Running out of options!

Amber x

Hi Amber, I am glad you was able to contact someone, I dont recognise the name though that you mentioned.

The symptoms you are sufferening are typical hemeplegic migraine symptoms and you need to try Botox and Flunarizine, both of which Dr Matharu will give you.  The drug is not avaialble everywhere.

If you want to private message me as the moderator has said, please do so and I can give you a phone number to call the nurse practioner in Dr Matharu's and they might be able to help you with some better advice.

I would also suggest you try Pregabalin, which your GP can give you.

Take care and keep in touch

Hi Amber!

Yes my migraine was 24/7 for about 10 months. I still don't know the exact reason of how I got it. But I know that I was going through a hard time in my life so I think it was stress that was causing it.

But when I had the migraine I was stressing about that and making it never go away. I got a mouth guard and I think it started to help for about a month and they eventually got less painful to where I didn't need to stress about it and it just went away.

Literally, Amber, same. I am a 20 year old student and it is VERBATUM the same situation...as I sit here happy to see others feel my pain while doctors don't seem to know what's going on, I am also sad but hopeful...

Hello Caecae

How long have you been having this problem, is it everyday also?

What tablets are you currently on?

It is very comforting to know someone else out there knows how I feel and how hard it makes life

Amber x