End of myself

[sjwhitfield]

Am 50, had migraines for years, tried everything, am having daily bad headaches and migraines, have had two sessions of Botox that haven't worked, still getting daily headaches, just don't know what else I can do all preventatives make me exhausted. Am so fed up, I am trying magnesium but only been taking for a week, am sooo fed up.

[ben1988]

Reading your post was like a mirror.

I too have had two rounds..just had a third of botox.. Totally exhausted to the point of tears some days..just manage to get through the day at work..I'm worn down and feel very low with the constant daily headaches and exhaustion. I too am.unable to take the meds which I have tried many!

Have a tens machine which dosnt really help..they have mentioned external gamma treatment? 

[sjwhitfield in reply to ben1988]

I have read about that I will mention to my neurologist next week, thanks. Hope it works let me know.

[Hope__]

Hi, i totally feel like you "end of myself" i am so exhausted and scare that migraines will never  leave my body, i have been to national migraine centre and they said that mine are hormonal migraines but sometime the triggers can be any from stress to lack of sleep. I tried so many things and still have very bad months full of migraines, i don`t know what to do anymore i am depressed and feeling trapped, every time i plan something that can be a holiday or a job interview or  just an important schedule i pray that i will be migraines free otherwise everything have to stop and i have to spend hours in the dark away from every sounds, smells, alone, missing everything even a beautiful sunny day.    i am fed up of living in constant fear of next attack with the paranoia that the triptans with aspirin don`t work anymore. I have been taking magnesium  for years but as i read on other posts things work differently for everybody. I never tried Botox it is too expansive and not sure it will work i feel like a guinea pig sometime trying things out and feeling down because it doesn`t work. Sorry to be so negative i just had a very bad migraine two days ago lasting all night and day.     

[sjwhitfield in reply to Hope__]

Oh poor you, Botox is available on the NHS, ask your gp to refer you to a neurologist, have you had scans and  Mri? They said mine are hormonal too and I super sensitive to everything, but that doesn't help. Try a chiropractor too, might help.

[seawarrior in reply to sjwhitfield]

Botox is only available up to a certain age.  Older people are expected to continue suffering - as if they might not have enough other problems to deal with!!

[Pvancourt in reply to seawarrior]

I've never heard that Botox isn't available for older people.  I'm 53 and still do Botox.  Do you know the reasoning behind that?  I don't think it's helping me, but I'm afraid to stop.

[seawarrior in reply to Pvancourt]

I assume you're in the UK.  I'm not sure whether the top age is 60 or 65 for free NHS treatment but I wasn't given a reason and I didn't bother to ask.  If it's not permitted by NICE then there's not much you can do about it so what's the point of asking?  However, it's available at the National Migraine Centre for, I think, £650 per treatment which I believe needs to be repeated every three months; consequently, a no-no for a pensioner like me.  No wonder richer people have a better life-expectancy than poorer people!

I imagine (I mean "imagine"!) that the reason for it's not being available to oldies like me is because (a) it hasn't been properly tested on people of my age, (b)  older people don't tolerate it so well or (c) it's a case of NICE ageism! 

I'm trying a daily dose of 16mg of Cadesartan at the moment......

[Pvancourt in reply to seawarrior]

I'm in the US, luckily my insurance has been covering most of the cost of the Botox.

 I just got a prescription for cadesartan hopefully we will both get some relief soon.

[CJA2012 in reply to Pvancourt]

That's the 2nd time today I've heard this medication... I've never been offered it before after trying everything else twice. It might be good to trial it.

[CJA2012 in reply to Pvancourt]

It might be a budget-thing to do with certain hospitals. I had my first set at 29 (Jan 2016) as I heard if you have botox much younger than 30 it can do damage to your face that cannot be repaired - so it's better to only do botox in the over-30's. Apparently.

[Margauxjean in reply to seawarrior]

What? That is sick-- what is the age cut off?

[designer111 in reply to Hope__]

Yes to this and the 'never knowing when they'll strike next and scupper my plans'!! Can I please ask if they are hormonal (pretty sure mine are as exhausted al other treatments really) then have you tried a mini pill. Just progestogen and no oestrogen therefore cant get the dip. Sure you know this already! Will perhaps try but didn't want to muck my body up. Altho prob doing that with tablets anyway! Thanks

[Gambit62 in reply to designer111]

My migraines are hormonal and changes in either oestrogen or progesterone will trigger - so not a given that mini pill will help.  Had to take some artificial progesterone for a prolonged bleed last year and, on queue,also had a migraine.

[Margauxjean in reply to Gambit62]

I took the mini pill for a year and my migraines eventually came every single day. Went off and the migraines decreased. 

Doctors are often unaware of the fact that women with migraine should NEVER take any kind of birth control pill. It is a nightmare situation to be sure.

Migraineurs are prone to stroke and taking The Pill increases that risk bigtime. Best wishes to all. 

Keep sharing info and support, it helps us all keep going when sometimes it feels the only to to relief is stepping out. 

[CJA2012 in reply to Margauxjean]

You can take the POP pill with migraine. I just found out yesterday it's the only one I can have if I want to stop having the Depo injections. I used to take the combined pill years ago - obviously can't take it now!

[Margauxjean in reply to CJA2012]

Fortunate for you if it helps. That is what I was on when my migraines got much worse, daily, and my period would not stop.

[Ursinia]

I have had migraines for 30 years and although they are now slightly improved as I take Beta Blockers, I still get them. I can say I would pay a substantial amount of money if I could find a complete cure. They affect everything I do, all activities and plans I make. I don't drink alcohol, eat chocolate, try to not get upset ( massive trigger) . I can honestly say that they dominate my life so I just enjoy the times when I feel ok.

[Margauxjean in reply to Ursinia]

I am the same way. I also avoid sugar of any refined kind and go lightly with maple syrup and honey. I started migraine at age 5 and am 64 now. Menopause worsened the migraine for me. Many women have this experience-- some find relief with age. 

[sjwhitfield]

Yes I have to say I now try to enjoy my good days and try not to get upset about bad days.

[Hope__ in reply to sjwhitfield]

well done good for you 👍

[Moon_Struck]

SJW - You have my sympathies, it's truly hideous when migraine takes over and you lose your life.

 We're all different and what works for one won't work for another -  however just wanted to tell you about my recent experience, some of it may be of help.

After many years of crippling migraines, that returned with a vengence (from my youth) brought on by early menopause (loss of estrogen) at 44 - recently I've had an improvement. 

As you probably know, for women, often the main trigger for migraine is hormonal and fluctuation / loss of estrogen levels, particularly from age 38 onwards.  Have you had your estrogen level tested? 

I also am super-sensitive to hormonal changes and have a over-reactive constitution.

What I've been taking:

* One tablespoon of flax seeds at breakfast - leave to stand in milk or water for half an hour (or overnight) to soften.  

* Homeopathic remedy Aconite (from Helios) - take it as soon as I start to feel the dreaded neck pain that precedes a migraine - I am amazed but it does work.

* Solgar Magnesium + B6, 3 daily.

* One teaspoon of Chia seeds soaked in glass of water, daily - for bowel health.

* Lowest dose estrogen patch, Estraderm 25 - and progesterone (Utrogestan), taken only every six weeks as I'm progesterone intolerant.

Now I don't know which of the above is working, maybe it's the combination of all - however I've definitely felt an improvement and have actually gone **one whole month** without one.

The Aconite may be a good starting place? Initially I took it for hormonal adrenaline surges and palpitations but it does seem to stop the migraine.

I hope you find a way forward.

[Hope__ in reply to Moon_Struck]

thank you moon struck very helpful I will try next.

[sjwhitfield]

Thank you so much, I haven't had hormone level checked, I have never been able to take the pill and thought it might be same with hormone treatment, but I will get it checked, many thanks will look up aconite too. Sj

[KateeB]

I aM in a similar situation . Migraines most days for 30 years. Tried every preventative and every alternative treatment without success. Botox unsuccessful too. Greater Occipital nerve block great but only for two weeks. Had daith piercing one month ago and maybe helping a little. Migraine totally dominates my life xx

[sjwhitfield]

Oh dear poor you, it is miserable isn't it.  Occipital nerve helped me too for a while. Wonder if the gammacore is an option, I am going to ask my neurologist.

[designer111]

I got to that point of getting so many I was getting run down and perhaps that was a trigger in itself. Have you tried more holistic therapies? I'd love to say they worked for me but I tried cranial osteopathy for 18 months and couldn't particularly see a pattern. Do you have medication overuse at the moment? I tried magnesium but didn't work for me as much I keep reading great things about it. Maybe for you tho. I did try Vit B2 and think it may have made a difference but I did night shifts at the time which mucked my body clock up so Im not sure. May try it again. Im just thinking if you are getting daily ones your body needs a break?

[sjwhitfield]

Yes I have wondered about med overuse but so scared when my head so bad not to take a Triptan, couldn't bear the pain and vomiting. Did u take high dose b2? Sjw

[Lora300]

Hi everyone! Go to face book group page it's called : Migraine sufferers who want to be cured. And see if it's will work for you. 

[weffs62]

Hi

I am 53 and have had 'common migraines' since the age of 5, experiencing them up to three times a week when I was young. Their intensity lessened over the years and then  morphed into menstrual migraines. Unfortunately though having a hysterectomy did not stop them either! I have tried many different approaches from acupuncture, medications (still use sumatriptan at onset of migraine if I can catch it in time), chiropractic/osteopathy, cranial osteopathy, faith healing, tens machine, exercise, you name it! However possible breakthrough recently - and something that is totally within my control!! Having read someone's post regarding ketogenic diet being good for epilepsy and also for migraines (calming excitable brains!) , I have adopted this approach and significantly reduced my carbohydrate intake. However - and I think for me this is the key - i have cut out all sugar (barring a portion of berries -strawberries, raspberries, blueberries every other day) from my diet. I havent had a headache now for THREE weeks - even a slight muzz- which is unbelievable and keeps me motivated to continue. Yes it means cooking from scratch, yes it means no naughty stuff at all but the benefits are huge. Interestingly I havent lost too much weight as yet but I think my body is still transitioning from burning glucose to becoming fat adapted, but that wasnt the main reason for choosing to make the change. Life is infinitely better and I recommend this to everyone who is beginning to despair about every feeling better. There is increasing evidence that Sugar is toxic for our bodies and it looking like I can evidence this - admittedly one person is not sufficient for the gold standard RCT but hey! Would be interested in hearing if anyone else experiences the same. 

[Claudeminh in reply to weffs62]

Hi I am going to try it as well. I did it for five years before I had meningitis. That five years was the fittest, leanest, healthiest years of my life with an average weight of 59 kg. 3.5 years ago I got viral meningitis and have had chronic migraine ever since. Due to the endep and beta blockers and sterioids I put on 20 kg and know the only way to get it off is to go on the ketogenic diet. I also have regular botox and occipital nerve block injections but I will try the diet as well. Good to hear you are feeling well.

[CJA2012]

There are ONS and SCS surgical trials - you could apply for one? I applied and am getting seen in June for potential surgical intervention. If you've exhausted all other avenues including the botox, it might help you.