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

Hi Lisa,

I'm glad to hear your husband had found a way to break his cycle, it's a shame he isn't migraine free, but it's got to be a relief to not have it constantly!

I will have a look into that and if Botox doesn't work for me, then that's something I will bring up with my neurologist. Thanks for that

Can I ask how often your husband has Botox? My neurologist mentioned something about not being able to have it too often, but I haven't actually seen the doctor that will be doing it yet to find out all the facts. My appointment had been brought forward to this Thursday, so fingers crossed!

All the best to you both, keep me updated to if you find something better.

Ziggeryzag & Littleted, my neurologist told me to cut out all painkillers when I started seeing her last year, so I stopped taking paracetamol & ibuprofen, sometimes co codamol. But I found no change in my migraines and found myself needing to take something, in case it took the edge off. Now I only take something if I really need to, but I have a problem with my knee and stomach that require pain killers so it's very hard not to take anything. I'm just a walking health problem haha!

Honestly I don't know how you've coped with migraines for that long Ziggeryzag, it's so unbearable. I have so much respect for you. Most days I don't want to do anything fearing my migraines get worse. I've never really found any triggers but now I'm keeping a migraine diary, so maybe I might find something.

Aishajv thank you, will have a look at that

Nick, thank you for sharing. Glad your migraine free now! I will definitely have a look into the gluten thing and seeing if that helps any.

Thanks everyone

He has Botox every 3 months. It's supposed to be preventative so he can hopefully get off the other preventative meds. Those are Depakote & Doxipen. The Doxipen was part of the cycle from the hospital. He did a diary for a long time & the only thing that was consistent that could be a trigger was the weather. Hopefully it will work for you. He thinks he sees a slight difference with it, maybe.

Ahh thank you. I've been told by someone else that it's like twice a year to have the injections, but maybe that's dependant on the individual.

I hope your husband manages to come off the other medication and his migraines decrease/go. Thank you for all your help

Hi Becky

Top tips from 3 rounds of Botox: wash your hair before you go, you need to leave the injection sites alone for 24 hrs - apparently friction can denature Botox! My scalp was quite sore for the first night but my injections were in the evening, so don't plan any outings that evening. You should be checked 1/2 hour after the injections in case you are one of a v tiny number who have an allergic reaction so best not to drive yourself home first time.

Don't be down hearted! It takes a few days to dim the Migraines down - I found good relief for the middle 6 weeks of the 12 week cycle - not enough to continue as self pay or justify nhs funding but we did book a short break on the expectation of relief and had our first visit to London friends in 2 years.

Ask your Neuro about indometacin, it's the best painkiller for me and there are a whole suite of "indometacin responsive headaches"

I take indometacin at first signs, ratger like triptans which don't work for me, and even if the Migraine still blossoms I've not had one above 8 on my pain scale for over a year. Having passed a tiny kidney stone at the weekend, my migraines used to be worse and last 6-8 hrs at that pain level.

I've just started Candesartin, since BP spikes are causal for me, worth a try??

Good luck

Helen

Thanks Helen! And yeah I will definitely ask about that med.

Problem is with my migraine, I don't have an indication to the migraines coming on, it's just constantly there. I can tell when it's getting worse. I definitely just need something to break that cycle to then tackle the onset.

Great that you haven't had one about 8 for a while though, I hope you manage to get it below that.

All the best

Becky

Hi, I too have constant pain, about 2-4 on my scale which has had me unable to work for over a year since I did the no pain meds at all for 3 months and now struggle on with constant back pain with 4 paracetamol!

I've lived with my daily migraines for 10 years now and have so many triggers it basically boils down to any stressor my body dislikes but my biggies start with ice pick eye,which usually wakes me up so I can down the indometacin IF I really want to function that day, usually I tough it out which means the whole day in bed 6-8 times a month.

Good luck on Thursday xx

Do any of you have chronic daily headache like me.

Migraine cause me to have to lie down and sleep, but the daily dull cloud do doom hanging over my head is what's my main issue.

Immigran does clear it but trying to find a preventative to cure that would be half my battle, as these dull throbs I have daily go either to migraine or nothing

Normal stuff from chemist doesn't touch them, only immigran.

I know I'm super late of this but ask your doctor, neurologist preferably, about a drug called inderol and a

possible imatrix pen. The inderol is currently what i take as a vessel dilator to provide good blood flow to my

eyes as the vessels in my head tend to constrict. The pen is for when the migraines get so bad that you use it

like an epi pen for immediate relief. I have glasses too as if i don't take the medicine blood flow is constricted

and my eyes could literally die. Anyway its definitely something you should check into

Hi Brannon

I think Inderal is a brand name for Propranalol a beta blocker commonly used to treat high blood pressure. I managed it for 2 weeks but the side effects for me were awful, couldn't drive so no help to improving my life. Imatrix I think is injectable sumitriptan - not tried that one but rizatriptan in wafer form is also worth a try, much quicker into the bloodstream than tablets, esp if you are nauseous. Not sure I could self inject even an epi pen once mine kick in I have difficulty focussing my eyes.

My Neuro mentioned optic nerve stimulation, anyone come across that??

Best wishes all

Helen xxx

Hi Brannon, will have a look into that, but if one of them is a brand name for propranolol, then I've tried that and side effects were awful, but will definitely have a look into it, thanks!

Had my first course of Botox today, and it felt awful! The injections hurt loads. Gotta wait 10 days now to see if there's any effect. Fingers crossed!

Though is it normal for it to itch after? The only side effect he really told me about was some patients find it hard to look up for a few weeks after. My headache is so much worse after though, hurting just to look at this.

Thanks!

Oh my god Becky-Louise, when I was reading through your story, I thought I'd written it! Everything is identical to my situation other than when I had a lumbar puncture my pressure was 24 and they told me it had to be 25 or over to be diagnosed as raised intracranial pressure!

I've been in pain every day all day since 8th August 2013. I'm 24 and my life feels ruined. I'm in so much pain I am house-bound! My neurologist has mentioned botox but says he wants to try more drugs first (even though nothing touches the pain)!

I really hope the botox works for you and would love to hear back. I need some hope as do you. It is impossible to live like this in so much pain everyday. Not even a 1minute pain free break!!

Thoughts are with you and really hope you get some relief soon!

Jenna

Hi Jenna

I hope you find something to help you soon! Honestly I know how awful it is, I'm fed up of living my life like this. And most of all , I'm fed up of doctors asking me "how many days a week do you have a migraine?" They don't seem to understand it's every day! Then look at me like I'm lying. My employer can sometimes be really funny about me sometimes being in too much pain to work, no one seems to get it unless they've had a migraine.

Maybe it depends on age and stuff as to what your Intercranial Pressure would be if too high? I'm not sure though.

Yeah I asked about Botox a while ago and was told I needed to try at least 5 medications before the neurologist could refer me and the NHS take it on. How many have you tried already?

Honestly though, I really hope it works because I found it painful.

One thing I can suggest is asking your GP to refer you to your local Pain Management clinic. Might take about 3 months to get an appointment, but they can do Botox (if you haven't already been referred to it by then) and acupuncture. They will also talk to you about the medication your taking and seeing if they can help manage your situation and sort of help get you get back to living your life normally.

Just something to consider.

Anyway I will definitely let you know how the Botox goes!

To anyone that's had the Botox to help with migraines-

Is it normal for it to itch after? And also were your headaches worse after it?

Thanks

Hi Becky-Louise - I signed up for this forum just so I could reply to your message. I could not sit here knowing how much you are suffering. I was suffering more migraine days that not, but nothing like yours. I did have some ok days mixed in. Anyway - I have a couple ideas to share. I am sorry if they have been mentioned somewhere in the thread. Compro is an anti-nausea medication, but is known to help with migraines. It is a suppository - a first for me. They did cut my migraine symptoms, but I also had some of the nasty side effects. Maybe this would help you? And hopefully the relief outweighs any side effects? The other idea is BOTOX injections. This treatment has been reported to break the cycle of migraine and provide some really good relief. It is only for people who have "chronic migraine" - which you would likely qualify. The injections are repeated every three months. I hope you are able to get these under control and have an improved quality of life.

Hi Jules Ann,

Thank you very much for your comment, everything is appreciated.

I will look into that Compo and speak to my neurologist about it.

And I had my first round of Botox on Thursday night, still waiting to see if there is an effect, but fingers crossed! I have to admit though, my migraines have been worse since having them but apparently that can be a side effect. My head was also really itchy around the injection sights but that's died down now thank god haha.

Thanks