No quality of life

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I am 53 and have suffered with migraine all my life but it was manageable and regular as clockwork-every 2 weeks,lasting approx 8 hours.However since 2013 they have become unbearable,lasting 3-4 days every week,accompanied with severe vomiting and unable to get out of bed or even move my head and leave me so exhausted.I have tried so many medications,preventative and Triptans and more recently 2 rounds of botox which haven't made any difference.I have lost my job,I have no social life and very rarely leave the house as I'm in so much pain.I was told by every single Doctor I've seen that my migraines would disappear when I hit the menopause but they have become worse.Has anyone had a similar experience? I just need some hope.Nettie

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15 Replies

  • Posted

    Hi Jeanette,

    You sound like you've had an aweful time lately, sorry to hear that.

    I know you said you have tried triptans, but I wonder if you have tried Sumatriptan in an epipen type injection.  I had tried the tablet version and it wasnt mych use and then when I tried this injection, it worked in about 10 minutes and it transformed my life.

    I suffer cluster headache and hemiplegic migraine.  I take the injection for clusters and I have botox and Flunarizine for the HM.

    If you have not tried any of these they maye work for you, they dont for some but they do for me.

    Good luck and best wishes.

    Take care and let us know how you get on

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    • Posted

      Hi personal20,my neurologist is reluctant to give me the injection as he said although they combat the migraine quickly, they aren't as long lasting as the Naramig,which is what I'm taking now,along with ibuprofen,co-dydramol,cyclizine and metocloperamide.I had flunarazine earlier in the year but it triggered a nasty depression and I gained weight so I came off that gradually.Unfortunately I seem to react to most of the drugs I have tried but I am desperate to get my life back so any advice is appreciated.thank you.

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    • Posted

      well sumatriptan injection still could be worth a go, what do you have to lose?  If it helps and you can get some quality of life then thats good right?

      It could be that the dr is reluctant to prescribe it as its more expensive than most drugs!

      Challenge what he is saying

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    • Posted

      Do you get a rebound on sumatriptan injections?I used to take the tablets a few years back but changed to zomig and then naramig as they stopped working and the rebound was terrible.
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    • Posted

      no, it doesnt come back once the pain has gone, but as I said, everybody is different, what works for one, may not for others, but stiill worth a go I think, dont you?
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  • Posted

    Hi Nettie,

    I suffered common migraine - i.e. severe headaches, agonising earache, nausea, vomiting etc. but no aura - from the age of about 20, and I can only say they got very much worse around the menopause. They sometimes lasted up to four days. They eventually started calming down a bit, but not till at least 10 years after the menopause.

    The interesting thing is that they stopped almost overnight when I retired from paid employment at age 66. As another poster on these boards said: "Work does your head in!" In the seven years that have passed since retirement I've only had two or three of these headaches, in spite of doing a demanding voluntary job during the whole of that period.

    Hang in there!

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  • Posted

    Hi Jeannette

    Im sorry to hear about your migraines.  I get them as well but they have lessened.  When I feel one coming on I take a Rizatriptan 10 mg ODT right away on the onset...if I feel it coming on strong I also take a nausua medication....if it's not going away I take another Rizatriptan in 2 hours and I try to  lay down and rest a bit. (If I can ) IMPORTANT is to drink plenty of water each day and cut back on caffeine/ chocolate.  You appear to be like me as far as menapause......many women get less migraines after but I ended up getting migraines that I didn't get much before.  It's like a hormonal issue.  Also I do get some when weather related.....so does a friend of mine.  She takes a Fioicet med along with ibuprofen and knocks it out.  I cannot take any NSAIDS due to another health issue I have so my neurologist told me that if the Rizatriptan does not knock it completely out by day three to take a fioricet with Rizatriptan I will try that next time. I get so sick as well and end up in the ER which I hate so I asked him to give me something to knock me out so I can stay at home and sleep so I won't feel the pain.  There is a strong nasal spray that you spray into one side of your nose and it is suppose to pretty much knock you out.  You might ask for a blood test to check your hormonal levels.  I have Vagifem for Atrophic Vaginitis 2x weekly and wonder if that is why I get less migraines now?

    i hope something here may help you.  Please keep us posted

    Take good care

    Wendy

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    • Posted

      Hi Wendy. You mentioned that the ER give you something to knock you out yo make you sleep. Do you know what it is as I have been asking for something like this as I can't deal with the pain of my migraine and just want to sleep. 

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  • Posted

    Hi Jeannette

    I just posted to you some of my info and read some of the other posts.  Stress and lack of sleep are definetly triggers for migraines.  Eating well....lots of water.....and excercise are all so important.......also as mentioned checking out your hormone levels........my doctor mentioned another drug that will be out soon is suppose to be very good......I don't like to have to rely on drugs...it's better to care for our bodies naturally but it's always good to know that there is plan B that works.

    A good friend of mine just sent me an article about good results from much less migraines to healing them with the Keto diet......check it out.  If you need to lose weight that will help that too.

    Best,

    Wendy

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    • Posted

      Hi Wendy, thank you for your reply.I eat a really restricted organic,vegetarian diet with no artificial additives which basically consists of Rye bread and veg as so many foods are pumped with hormones and crap which trigger a migraine. What is floricet?I'm in the UK. It really helps knowing there are so many women going through the same thing as me as no one around me really understands.I've lost count of the well meaning"have you tried a wet flannel/ibuprofen/deep breathing etc?"advice I've been given along with tales of how they carry on at work with an aspirin and a cup of tea!

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    • Posted

      Good Morning Jeannette

      I live in the US.  I'm sorry as it appears I misspelled the medication Fioricet...it's a prescription med for tension type headaches that relaxes muscle contractions.....also seems to help friend if headache is weather related.  The other name for the med is  Butalbital not sure which one is generic.  I just picked up my prescription for it so will try it when needed.  

      So good that you eat well......do you drink a lot of water?

      So greatful for these blogs as we can try to learn from each other.  When others don't have migraines....they really don't understand the pain and suffering that we go through.

      I hope you have a good migraine free day today!!🌺 Prayer helps me too!

      Wendy

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  • Posted

    Hi Jeanette,

    I used to have hormonal migraines once a month during ovulation then 4 years ago I started getting migraines every day. Every little thing can trigger them, even water boiling in a pan or standing still in a glass. I struggle with any noise, light, movement or patterns and I have 2 sons, a 6 year old and an 8 year old, who of course jump around a lot and make a lot of noise. I rarely get out of house except to do the school runs. We don't have any visitors because I can't handle the noise or busyness. So I understand completely when you talk about no quality of life.

    I have tried out many different medicines, chiropractic, acupuncture, hypnotherapy... Lots haven't worked but there are a few things which have helped me a bit:

    Botox: Without the botox injections, I couldn't get out of bed because of the pain. I couldn't do school runs or cook dinner. I still have many migraines when I can't do those things but the Botox has certainly helped. I know you said that Botox hadn't worked for you, but I was wondering if you knew about not touching the Botox areas or lying down after the injections for 4 hours because the Botox can leak or shift and resettle in a different place. Also aboht not taking a shower until the day after. I didn't know about this and my first round of Botox didn't work - but then I did lie on my front doing Pilates exercises on the same evening. Now I am very careful not to touch the area and try not to shower until 48 hours, although I generally only manage until 36 hours because my eyes start to sting from the Botox.

    Magnesium oil: I found the oil is the best means of absorbing the right dose of magnesium. Some magnesium supplements do not contain much actual magnesium or they cause bowel problems!

    Vitamin B2

    gammaCore device which stimulates the vagus nerve: I find this really helps with migraines which are caused by too much busyness or noise around me. Not so much with the huge hormonal migraines though.

    Green glasses: I did a colorimetry test to see if coloured glasses could help with looking at patterns, such as stripes. The green glasses haven't really helped with the patterns but they help by taking the edge of things if you are sensitive to light.

    Hope some of this helps. Please let me know if you need more info on anything. These measures haven't solved my migraines - I'm still desperate enough to be taking the Flunarizine even though it makes me so depressed and the other side effects are awful - but each thing has helped in a little way.

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  • Posted

    Hello, I'm really sorry about your condition. I understand that chronic migraines can be a great cause of worry for people who suffer from it. I really recommend that you manage your migraine with biofeedback therapy.

    This article will help you.

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    http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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  • Posted

    Hi, I am 61 and my migraines have got worse as I've got older, tried most preventatives but most don't agree with me. I thought I had found my 'cure' two years ago when I started taking Pizotifen but now I get headaches most days. Fortunately, they do respond to a combination of paracetamol and aspirin most of the time and if not sumatriptan works for me. I gave up work 4 years ago and thought that perhaps they would decrease but no such luck. I have seen a neurologist and had an MRI scan and everything is fine, so unfortunately, I think it is something I am going to have to live with. Sorry if this doesn't help you.

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