I have a constant 24/7 migraine. Anyone got any ideas for relief?

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I am a 57 year old woman (through menopause - last period 7/2014). On 4/5/2010 I woke up with a migraine. I'd had them on and off for about 25 years but they never lasted more than 3 days or so. Unfortunately, I've still got that 4/5/2010 headache. It changes location and early on the severity ranged from a 6 to a 10. They are now only a 9 or 10 on the pain scale. I have had every test run and tried every medication. I have been to UCLA Medical Center and the Diamond Headache Clinic in Chicago (for a week). I've had pain blocks, epidurals, tens units etc. I live on Dilaudid (56mg a day). We are currently testing for the right pain med to use in an implanted pain pump. I had to quit work 5 years before my retirement date. I would have had 30 years in working for the state of Calif. I had a problem after I had a spinal tap because apparently I was supposed to be told to go home and lay flat (not even a pillow) for days. Because I didn't, the puncture didn't heal and I leaked spinal fluid. That was not the cause of the migraines, the tap was done during the diagnosis process for the migraines. The only thing that helps a tiny bit is botox from my headache specialist. All it does is make the pain meds work a little bit better. Please if you know of anything that helps, let me know. 

I forgot to mention, I don't sleep either. On average I sleep 2 to 3 nights a week. I often go 3 nights in a row without sleeping (and I don't sleep during the day ) even though I spend my life in bed. I'm afraid to say I've reached the point that should I sleep I would simply rather not wake up (but I couldn't do that to my husband or family).

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14 Replies

  • Posted

    So sorry to hear this! Mine lasted 14 months every day! Not sure if it helps but I just found out my gallbladder is not functioning (no gallstones though) and this can cause migraines, right shoulder pain, nausea, heartburn, chest pain, stomach pain, and the list goes on. May be worth looking into but everyone is different.
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    • Posted

      Thanks for the reply Amanda. I had gallstones and had to have my gallbladder removed about 3 years ago. You didn't say but I hope you don't suffer from migraines any longer. God bless.

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  • Posted

    My heart goes to you! pain and not sleeping is my idea of hell. I am the same age as you. Migraines can be down to so many things. Here are some ideas that might (or not) be relevant:

    ​Thyroid issues (specially with your changes of hormones). This should be easy to test.

    ​Candida in your guts: again not difficult to test and responsible for a LOT of issues. Some doctors are not convinced this could be a problem and tend to not suggest testing. My take on that is if you feel bad enough, you would want to test for everything rather than have pills for the rest of your life. More and more the research seems to point to  problems with guts, either leaking or  bacteria. It might be useful to see a nutrional therapist?

    ​TYPES of food and TIME you eat. the usual culprits could be :

    ​- Mono Sodium Glutamate (MSG) usually in chinese food or as a flavour enhancer. Found under many names.

    - any types of SULFITE (yes, wine is part of it)

    - for me also dextrose and malto dextrose etc..

    ​- Aspartamate and Saccharine or any sugar free food.

    ​So preparing food from scratch is so much healthier. Personnally I tend to not eat after 7.30pm or I wake up around 4am with a migraine which can last up to 3 days.

    ​I hope you will find some help (mine or others) on this forum and that your health improves. Please keep us posted and good luck

    ​Pascale

    .

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    • Posted

      Pascale, thanks so much for taking the time to respond and share. Unfortunately for me, everything you touched on I am aware of and have either been tested or do not indulge in. Did you know that we shouldn't eat any cooked meat after 48 hrs because as it sits refrigerated or not, it creates tyramine which is really bad for migraines. Anyway, let's keep sharing any new ideas we hear about. God bless

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    • Posted

      I've heard that about left overs. They create histamines, so some people have tried a low histamine way of eating. I haven't found an answer, just throwing out something else to consider.

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  • Posted

    I would say to both of you please look at auto immune disease as a possible underlying cause. Hamneggy you don't say if you have other health problems.

    I suffered this kind of migraine and it was due to auto immune dosorder. Does not show up necessarilly in blood tests and my lumbar puncture was clear.

    You may need to see a different kind of specialist for a proper diagnosis.

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  • Posted

    Have you been tested for lime disease, inability to sleep is classic for that. But I don't know if it relates to migraines.

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  • Posted

    Hi,I am also very young (54) and i've had migraines every month maybe twice for over 10 years,then 3 years ago I developed daily headaches with maybe 1 day off and then the headaches all over again and as you know it is truly hell,i also devolved a sensitive strip on the back of my head (a very strange feeling) I too had exausted every avenue and pain clinic etc ,medication with beta blockers ,triptans etc etc ,while I was living in germany( here there more about why and not here's some more meds) they suggested I go to the pain clinic for accupunture ,i didn't really believe in this but what could happen nothing worse than this,he then told me straight away I had medically induced headaches,the accupunture eased off but not permantley the sensitive strip on the back of my head but I would have to deal with the headaches alone and was warned it will get worse before it gets better,it was all about medication (paracetamol,aspirin etc)and if I took more than 10 to 15 days of medication for headaches in a month then I was creating a roll on effect,so I tried failed tried again and so on untill I began to over 3 months have 2 days break,then 6 days break between headaches and now 6 months later I have a headaches maybe every 3 weeks including migraines ,you see before they were all as bad as each other so I called them all migraines,i kept a diary which was a great help even just for my moral, it was awful but the end is just WOW truly WOW,i have a migraine now but that's ok as I just wrote it in the diary and my last headache was 58 days ago.

    It sounds easy but wasn't and maybe it's not your solution,just one other thing I have nerve damage in both legs and take tramadol etc (no they aren't the problem) and here they implanted 2 wires in my spinal cord attached to a 9 year memory battery in my cheek (the cheek in my trousers 😀winkthis sends voltage down my legs to cover the pain and the brain recognises this voltage signal quicker than the pain signal so I can cut down on medication,my point is this is made from the company Medtronic and hospitals (lots in the uk) do the same operation but implant the cables in the neck for migraines,works on 80% of people that manage to reduce up to 60% and more of there medication,unfortunately I am the 20% I think but hey ,you could chat to a Dr about it.

    I do hope you get some kind of release and ignore the mistakes in this text as I have an excuse I HAVE A BLOODY HEADACHE.😉 take care

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    • Posted

      Hi ya Dave (bunny), Thanks for taking the time to write. I too have done the wien off the pain meds to rule out rebound headaches. No help. I've done acupuncture and acupressure. No help. I've had the tens unit (wires in my neck). No help. Tried the Cefaly (halo unit). No help. All and all I guess I'm helpless😉 I did hear from my headache Dr today that they are testing a new medication that effects the genes. Really gave me a boost because I have a 5 generation history of migraines. I pray things continue to improve for you. Take care and God bless

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    • Posted

      Crap, I just sent you a sort of funny long post but I put the name of 2 devices and I guess you can't do that. Anyway, in short I have tried all you suggested with no success but I understand they are working on something new that effects the gene and my migraines go back 5 generations. I am hopeful. Take care and God bless. Hope you do get the other post I wrote.

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  • Posted

    Oh my. I can soooo relate. A similiar situation happened with me when I was 56. I had to go on disability because of the headaches 24/7. So here's what worked for me. Started on bio-identical progesterone 300 mg. Was a miracle cure. Also, adjusted my diet to remove any possible triggers including nuts, wine, etc. Added magnesium glycinate to my supplements as well as 5htp which is a serotonin supplement. Migraine sufferers are typically low on both. There's a great book on balancing the brain neuro-transmitters by diet by Braverman called "The Edge Effect". You can google in online and it details diet for each of the neurotransmitter types. I am very sensitive to meds so I went the natural route to avoid the side effects and I am doing much better. I have to watch the salt and the stress levels. Migraine is a symptom of imbalance in the body and when we women go thru menopause everything gets thrown out of whack. 

    Hope these tips work for you. Keep us posted and keep the faith. You will get past this. 

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    • Posted

      I wish what worked for one, worked for another. I've been using all of the above, migraines no different. How long did it take for you to see a difference? I'm 62, 30 year sufferer, recent years have worsened condition. I think stress has had a factor. Thinking of adding Yoga to stretch neck and shoulder muscles where I think I hold a lot of stress.

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    • Posted

      Hi Patricia, thanks much for responding. Were your migraines the same before and after menopause? I watch the food and drink triggers. I tried the magnesium but it made my headache worse. I've never heard of 5htp. I will absolutely get "The Edge Effect". I have thought about the bio identical hormones but I'm concerned about the possible long tern effects like breast cancer. I don't have any hormonal problems. Did you have to see someone special to get them prescribed? I will look into it and discuss my concerns with them. Anyway, thanks for the leads. I can't tell you how much I appreciate it. I am beyond the end of my rope. Were it not for my loved ones, I would simply take a "few extra" dilaudid one night. It has been 6 years now without a moment of pure relief. I almost never leave the bedroom. Thank you for the renewed hope. God bless.

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