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

Hi Becky - you are not alone! I too found my head really sore and itchy for a couple of days after Botox but settled down after that. Also my headaches were worse for a few days then I got a really good 6 weeks before they came back thru again. For me 6 weeks of 1-2 migtaines a week was not enough to warrant continuing after 3 rounds. Poss uniquely my tinnitus was MUCH worse when the Migraines were at their lowest! Spoilt Gravity for me cos the silent times were fillrd with the sound of someone running a bath inside my head- weird!

However, the combo of HRT - I'm soooo menopausal, B2/coq10/magnesium, and Candasartan at 2mg seems to be helping touch wood. I've only had a 3 on my scale for the last two weeks, but that may have been the stress of looking after my mum after she had a stroke 10 days ago. Back home now so will see if relaxing brings them back.

It may be that like me you need a combination of meds and stress relief techniques. My Neuro has just suggested a psychological approach too.

Hang in there

Helen xx

Have you tried a chiropractor? Sometimes a neck adjustment can relieve pressure at the base of the skull and help with the pain. Even if you've had X-rays and scans that don't show anything wrong, it might help. I was in a situation like that a few years ago. I was watching what I ate, avoiding my triggers, and doing everything I knew to do but the pain was constant and truly never left. There was nothing on my X-rays or scans to explain the pain and my doctor assumed I was exaggerating. After months, I went to a chiropractor for a separate issue but when he adjusted my neck the headache finally stopped. It's worth a try!

Hi,

Yeah I tried a chiropractor for about 6 months and it didn't make a difference to the headaches.

Thank you

Hi Becky-Louise,

I came across this discussion after one of my many hundreds of searches for answers to my chronic headaches/migraines. I also registered on this website just so I could respond to you, as our stories are similar.

First of all, I am really sorry about your current situation, and I sincerely hope the botox is starting to help. I have been checking this forum over the past few days to see if you have posted any updates. I really have been hoping that you are seeing an improvement

Tomorrow is the one year anniversary of my constant head pain, like you I am in pain every day. It fluctuates from around a 4/5 to a 10. So I can go a couple of days at a 4/5 then a few days at a 9/10, then back down again but with no real pattern. From your posts it sounds like your pain is always high level, but I am hoping I have that wrong and you at least get some lower level pain days?

I have been through several preventatives, had occipital nerve blocks, 5 days of DHE infusions, botox and tried a fair few homeopathic things too. I had my first appointment with a Chronic Pain Team last week, so here's hoping this may be a turning point, I have been assured by many people that it will be.

Anyway, my main reason for posting, even though from other replies you already know this, is to say that you really aren't alone, and I know your pain is very real and not made up. I too get so frustrated when I see a new Dr and their first question is something like, ' So when do the headaches come on?' So I understand 100% when you say the pain never goes. I also wanted to say that I admire you so much for keeping up with your commitments throughout this. To work and study whilst in constant pain is amazing.

I also wanted to share something the Dr I saw last week as a result of an occupational health appointment said to me which was, 'You will get better because people just do, it's just a question of when'. It normally makes me want to scream when people say things like that to me, though I do appreciate it's coming from a good place, but for some reason I believed this Dr, and I believe that you will get better too.

Best of luck with the botox.

Sophie.

Hi Sophie,

Thank you for posting about your own experience. It's slightly comforting to know when people are in a similar situation to me, though it's terrible we all have such chronic migraines!

I really appreciate how much of an interest people are taking into my story and sharing everything with me

I haven't updated about the Botox yet, because I'm actually not seeing an effect yet, though the Dr did say it would take around 10 days, so only 4 more days, still got my fingers crossed! The only difference I've found is I'm actually sleeping a lot worse than usual, but that could be nothing.

Did you find any relief with everything you've tried? I hoping so.

My migraines can be different levels of pain, though more often than not, they are higher up on the scale. But it usually gets worse throughout the day.

Can I ask, what are the DHE infusions you have tried? I don't think I've heard of them.

Honestly I'm nothing to admire, I find it so difficult to actually get up in the morning and start my day. I've actually had very many breakdowns at work from being so frustrated with the pain and getting stressed from work, that I'm surprised I haven't quit/been fired by now! But thank you, I admire anyone that's gone through this pain and still functioning.

Wish you all the best, hopefully the Pain Clinic can help you and it is a turning point for you. Keep me updated

Becky

Hi Becky

I have been looking for a cure for my migraines for a long time, over 15 years from what I can remember. I'm 37 now. Though they aren't everyday, I do get them 3 or 4 times a week lasting anything from 12 hours through to a couple of days. Mine, I believe tend to match that of a sinus headache as I get an intense build up of pressure, which results in a dry nose bleed, sometimes blurred vision, but due to the intensity, the doctors refer to these as migraines.

Unfortunately I haven't had any success, but thought I would list the things that I have tried, that may help others.

ENT referral - no problems found in MRI/CT scan, informed nasal cavity wasn't balanced, and may cause increased pressure and would cause breathing difficulties as I get older. Had a Septoplasty operation, made no difference at all

Saw a neurologist, who couldn't recommend any further diagnosis short of trying a different series of drugs.

Nasal douching, neti pots

Given various drugs mentioned in this forum, no effect, painkillers such as syndol, solphedine may reduce it but comes back after they wear off

York laboratory test to identify trigger foods (Intolerances listed with Gluten, wheat, yeast, peanuts, cows milk)

Cut out gluten, chocolate, dairy, citrus fruits

Diet of fresh fruit/veg smoothies for 7 days, had high hopes this would work as a lot of material stems from trigger foods, no change, perhaps should have gone longer

Dark rooms/cold packs can help, but unable to do much at work

Had eyesight checked, no issues found

I've reached the point now where I'm thinking they must be genetic and I can't do much more. My wife wants me to seek out a specialist consultant whatever the cost. There was something on the news in the last year about a genetic abnormality for headache sufferers identified and within 5 years they could find a treatment, here's hoping!

Hopefully one day

Hi again Becky for:-)

Definitely don't write off the botox yet, I've heard people report it kicked in after several weeks.

The infusions are where the medication is given intravenously , the medication being dihydroergotamine. I was given it every 8 hours, over a 2 hour period. I don't think it's used that often anymore as things have replaced it

As yet I'm still on the search for something that works, back to trying preventative, nortriptyline at the minute. Only been on it a short time though and well aware by now that these things have to be given several weeks. Provided you can tolerate it obviously! There are some that I couldn't.

Yesterday my mum told me about a conversation she had with someone that has studied pain teams, and she had lots of positive things to say. I know you mentioned them too in a previous post, so I really hope if you are seeing one that they can help.

Sophie

I agree, give the botox more time. I also have heard that botox lasts about 3 months and it may take 2-3 separate applications. I have not had personal experience with botox, but my best friend got some temporary relief.

I have had migraines most of my adult life (since 13) and I have found relief from chiropractors. Mine worked on the muscles around my head, jaw and neck and also on the neck spinal joints. Sometimes this is a little painful, but I get relief almost instantly from the migraine and it seems to keep them at bay. Physios or massage therapists can do this type of treatment as well. I have also used acupuncture as an immediate pain reliever, as I can not take pain meds. Hope this helps.

Hi Becky et al,

Ive got some news Im dying to share and I thought here would be a good place: today for the FIRST time in over ten years I woke up without a pain in my head. I didn't need to think ' will it stay at headache level or turn into a migraine'. I think cold turkey must be working...

Hi Ziggeryzag,

That is brilliant news, you must be feeling on top of the world! And it provides hope for the rest of us too :-) I have everything crossed that you continue to experience pain free days. After a particularly bad run of days, that news really made me smile.

All the best

Sophie

Thank you so much Sophie, Im glad you smiled!

Hi, Ziggeryzag,

After sleeping most of the day because my migraine has been so terrible, I'm very pleased to be smiling because you've had a pain free day!!

I really really hope this continues for you I bet it must have been the best feeling in the world, and I'm a little jealous haha!

All the best

Becky

Thank you Becky. And I really hope the pain clinic works for you. I had another idea, sometimes Ive found that a treatment that fails at one time in my life has worked at another time. So don't be scared to try a migraine treatment one more time. You never know.

Hi,

I won't be

How were the migraines today? I'm hoping you were pain free again?

Hi ! All was well on waking and sun shining too, so got it into my head to try to do an old walk of mine to a Costa . I haven't been well enough since Sept 2013 to walk hardly at all. So I set out and got half way! Then got on a bus and realised I had only a tenner on me. Lucky driver let me on cos he had no change. Anyway even tho I've given myself a little headache I think it was worth it.

Hope u ok