National Migraine Centre
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Constant migraine

I’ve had migraines for the past 5 years 24,7 my neurologist says there’s no cure I’ve got it for life but I have no life. My husband can’t take any more he can’t cope with not being able to do anything to help.

Does anyone have any ideas

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I don't know if I can help, however just in case I can, do you have relatives past or present with autoimmune diseases including Thyroid disorders? Or a history of early heart attacks or strokes and if females, miscarriages and stillbirths, and sometimes a red blotchy and lacy looking rash which comes and goes. If any of this rings a bell, come back to me. MaryF

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You're right I don't mean disorders can cause chronic migraines the one thing I would say for the migraines is to try the botox I had a migraine 4 about 2 years and I exhausted every form of migraine treatment there was I ended up at the Mayo Clinic and I saw a headache specialist and his name I find it quite funny is Dr. DoDick but that's just cuz it is silly but back to the migraines the Botox for migraines had not been approved by the FDA and I had the option of trying them but I was going to have to pay for all of it which was extremely expensive well since the Mayo Clinic was working with me and saw that I had used every form of migraine Treatment available they actually got my insurance to pay for it and my insurance pays for all of the botox now and so it's been quite a long time but it took about until the 3rd or 4th round of Botox till I really really noticed anything and then one day I woke up with no headache at all at all and I didn't even know what to do with myself because it been so long that I had had migraines that I have no clue what to do without one

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Hi Mary, The only thing I can think of is heart problems on my mums side of the family. I can’t think of anything else. Tracey

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ok probably not Hughes Syndrome/APS like me. Have you had your B12 levels checked? and also some find magnesium very good. MaryF

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I’ve tried both, and much more and nothing works

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do you mean you have tried supplementing or do you mean that your B12 levels were tested and reported as in range? The normal tests for B12 are a long way from telling the whole story and you can be deficient at the cell level well into the normal range. Problems absorbing B12 tend to build up very slowly over time but have a significant impact on ability to absorb B12 from food - so very high doses would be needed.

Symptoms of B12 deficiency - just in case there is anything else that hasn't been connected to the migraines

pernicious-anaemia-society....

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Morning gambit62

I’ve had the bloods taken haven’t had results yet, but I know they are testing me for B12 deficiency

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when you get the results then I'd suggest you post on the PAS forum as well, along with a list of symptoms

serum B12 has some significant limitations and many GPs aren't aware of this so it gets overlooked because things come back in 'normal' range whereas just using that as an indicator will result in missing 25% of people who are B12 deficient

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Hi. Not sure if it’s the same as me but I started with almost daily migraines 5 years ago too. I tried absolutely everything that was thrown at me and every suggestion. I had a daith piercing almos 3 years ago which did help with the intensity and and frequency but still suffered. A year ago I started on the Gammacore device which also helped a bit and I got my migraines down to about 15 a month then I heard that someone found antihistamine helped so started taking one a day, that helped again and I had a whole week pain free which made me think I must be allergic to something. My local health shop had a man that came me in a couple of times a month to do allergy tests, I booked an appointment for a week last Friday. I couldn’t believe what showed up that I had a reaction too. He told me to cut all the things out of my diet for 6 weeks and see how I go and maybe eventually introduce one at a time. I am a vegetarian and the things I was to cut out were almost everything I ate every day. Anyway after the first day I had a blinder (could have been due to detox, I don’t know) the second day I had a mild headache and since then ,so far,nothing. I’m still very sceptical as it’s early days and I’m waiting for the bombshell but I’m hoping very much that I might have found what’s causing the damn things. 🤞x

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Hi, so sorry your having such a hard time, migraines are awful. I have been struggling with chronic migraines most days for the past 4 years, with constant daily headaches. I was episodic before that. For the first 2 years I would be in bed at least 20-25 days a month but now it’s more like 1/2 a month and abortive medications work for me now. If you are in the UK the best thing I did was to see the national migraine center, they are truly amazing. Things I have found that worked for me to lessen the severity and frequency are (not in any order) being vegetarian, b2 400mg daily, magnesium, vitamin d, b12, feverfew, Cefaly, seeing an osteopath for my neck, and just had my first round of Botox a month ago. The Botox is definitely making a difference, but need to wait for the next treatment to know how well it is going to work. Things that didn’t work for me are cbd oil, coq10, amitriptyline and being vegan. When I have an attack I take either 3 aspirin with domperidone, or frovatriptan with domperidone, but being careful to never take triptans more than 9days and never taking more that 15 days in total to prevent medication overuse headache. Try everything, something will help and there are new treatments on the way. I have found that I just need to chip away at it, as nothing has worked fully for me yet. Good luck, hope this has been helpful and hope the pain free days start coming soon :-)

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Dear perks100

I have had migraines all my life and still have them occasionally only nothing like before, I can manage my daily life with help of sunglasses and ibuprofen together with paracetamols. The thing is I had a super neurologist, I stopped all medication I was prescribed by my GP’s and then I was given Hydroxocobalamin/B12 injections very frequently, first every day then every 2 days etc now I should be on 1 every month but new GP has decided 1 every 3 month. I have dealt with that nuisance myself with the help from these nice and very knowledgeable people on the PAS site. If I get large doses of hydroxocobalamin/B12 the migraines diminish and if I do get one it’s much less severe. I have my life back! It’s a lot of managing yourself as it is NOT a cure. I know what my triggers are and have a diet accordingly. I have a regular life style. Go to bed and get up at set times if I can help it. Sometimes with traveling that isn’t always possible but I try to keep to my schedule that works for me.

Ask your GP to give you starting doses of B12 injections ( not pills or sprays) and have them regular after that and see if it can work for you. I self inject if necessary or get one privately. Tell your GP it can’t do any harm to try and you might benefit. My old GP ( open for new approaches) put more patients with migraines on it to see if it helped them and for many it did.

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Hi perks100

It is horrible, there is no doubt. There is no cure indeed but there may be light at the end of the tunnel, so please don't give up !

Can I ask you -

1) What else (preventative) do you take other than painkillers? Also what type of headache you get? Is it constant and intense and on what area?

2) Have you tried giving up all wheat products (food), alcohol, red meat, cheese and introducing lots of fruits and vegetables in your diet everyday? Even though it will be hard, please try not to eat processed meat, deep fried food and too much peanuts. Also exclude Salmon, Tuna and only eat white fish. Instead of white rice, try to eat brown (whole meal) rice.

Drinking juice / squash is also not a good idea. If you cannot drink plain water at all, perhaps try coconut water (maximum 1 litre per day) as well as plain water.

3) Most importantly - are you able to exercise (light exercise) everyday? Even 15-30 min quick walk (each day) can help greatly.

------------------------------------

We have discussed this with another person in below thread - can you please read it, some part may be useful:

healthunlocked.com/migraine...

/ Troy

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perks100 I feel for you! Sorry that you are having such a hard time and you're right - it's no kind of life! You will find some relief, do not accept someone saying there is nothing to be done.

why don't you tell us 1) what tests you have had done and 2) what you have tried and to what effect?

This info may reveal if there is an avenue you have not explored. If so, your solution could be waiting for you. Keep the Faith! we will get ya sorted one way or another!

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Hi I’ve had so many tests allergy test hair tests, blood testing acupuncture. Reflexology, TMS machine, nerve block injections. Medication nortriptyline, Amitriptyline, topiramax. Pregabalin. gabapentin and I’m waiting to have DHE. I’d like to know if anyone has had DHE as it’s sound horrendous and I’m not sure it works so any feedback would be appreciated

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I’m in the same boat I’m afraid I just pop pills like they are going out of fashion as I have to work. Have constant head ache above eye brow and down my face. Desperate for help but not getting it. I really don’t know what the answer is . I have been like this since I was 24 and now 46 but they are more frequent now. Very fed up.

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This sounds like me, sinus pain. Is is typically over one eye, or either one? My migraines often start as a cluster headache or a regular sinus headache in the morning, then settle as a migraine over and behind my left eye. On very rare occasions it will be over my right eye.

You may have an allergy reaction (food or environmental), or its possible that you may haboring a constant sinus infection. That seems to be one of the contributions for my headaches. I would recommend having a LEAP study done for food reactions. It's more comprehensive than allergy testing. The body can have a reaction to foods without being allergic.

After years of testing, and LOTS of trial & error, we found that I keep a constant infection in my left sinus cavity. The headaches go away as the infection clears up during antibiotics, then they return and gradually get worse 24-48hrs after the last pill is taken, every time. They are now looking into a mild deviated septum as the possible principal source of the problem. Surgery for that.

There have been some other considerations, such as how antibodies affect digestion, which also indicate food reactions could be a cause for the mucous build up in my sinuses resulting in an infection. Hormones may play a role as it's also gotten worse this year after I switched from using the HRT topical cream to an injected pellet.

The LEAP study was quite revealing for me - about 20 foods on my list with varying degrees of severity, vs two in an allergy test that were "mild." It did help a lot when I avoid the foods on the LEAP study.

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Try a LEAP study. It is a comprehensive blood test for food reactions. It is not a test for food allergies, it goes deeper to find out what foods cause inflammation and reactions in the body. My allergy test showed I had two "mild" food allergies, my LEAP study showed I had about 20 food reactions and to what degree from mild to severe.

Also consider leaky gut syndrome and other digestive issues or disorders.

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Also try seeing a specialist in HRT, a GP won't be enough. Get a blood test that checks the levels of your hormones - estrogen, progesterone AND testerone. Also consider looking at your cortisol and thyroid levels. Look into DHEA. You may benefit from balancing your hormones with HRT. The cream worked well for me, the pellet hasn't been as good. I have a friend who does really well with sublingual tablets. Usually this is done with menopausal and post-menopausal women, but I've known women in their 30s and 40s who have tried this.

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I’ve been tested for all of these but no joy

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Have you been tested for food reactions? Not food ALLERGIES, food REACTIONS. There's a big difference and doctors usually aren't aware of the LEAP study or testing for reactions.

Also, if you haven't already, look into gut and digestion. Malabsorption, such as Leaky Gut, is often not known and can cause a list of problems that snowball into more

I've noticed a pattern with my sinuses and headaches. Most always left side (90-95% of the time), and never rid of the infection for more than 24-48hrs. Always carries a headache that goes into a migraine. Was sent to a doctor for a second opinion and she wants me to go into a full-blown sinus infection and headache, untreated, then do a CAT scan/MRI to hopefully pinpoint the problem.

My son took me to eat Thai food. I didn't know it's all spicy, which I can't tolerate. I ate the lowest of spicy selections on the menu. My nose ran and I blew it until my sinuses drained out completely. I breathed really well for days and had no headaches - until I mowed the grass. Looks like the doctor will get her CAT/MRI real soon. I think some of my headaches are connected to an inability to completely drain my sinuses, which creates a bed for bacteria and infection.

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Other than what I've offered from my experience, I have no other ideas. I do wish you luck as I know first hand how miserable and aggravating it is to go through what you're going through.

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Hi, I had migraines for many years also (around 20 years) mostly at night time, I tryed many medications unsuccessfully (mostly anti-depressors) , around 10 months ago, I finally found a natural supplement that help me very much, it is 5-HTP , low dosage (50 mg per day) . It help me in my case, maybe it worth a try for you ?. Regards. Gerald

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What drug or physical treatments have you tried Perks? And is your neurologist a headache specialist. That is, is he a professor or a consultant dr?

I'm a chronic migraine patient & I'm on preventative meds for migraine. The next step is Botox if the meds don't work.

Once you've answered my questions above, I could give you a bit more advice on what to do next.

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Hi Amy I’ve tried everything. Amitriptlyn, nortriptlyn, pregabalin, gabapentin, Botox nerve block, TMS machine and loads more

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I have been suffering with migraines for 18 years. They started after I was in a car accident. I was seen at a pain clinic for 6 years, I had everything: trigger points, epidural blocks, medial branch blocks, 2 radio frequencies, physical therapy for 5 years and nothing. There last resort was a stimulator or pain pump and I said no. I was shipped to a neurologist for years and tried every drug available, the only one that worked was Topamax. It took away so much of the pain it was amazing, but I started having side effects, tingling and numbness in my hands and feet also memory loss. So I was taken off it, and back to hell. I ended up with pain Meds and imitrex, which worked great, the imitrex I mean. I get 36 tablets every two months and I go threw all of them and I even run out from time to time. I had another MRI that didn’t show anything as usual. Then I had a ganglion block which actually made everything worse, I had a migraine that lasted 30 days it was horrible. Now I am scheduled for Botox injections. I have high hopes it’s going to work because of all the great comments by other people with migraines.

Good luck, I know how you feel. Until someone actually has a migraine they have no idea what your going through. My husband had his very first migraine and he was super sick. I told him it’s a migraine. His jaw fell open, “this is what you feel every time”? YUP. It’s amazing how he’s changed now that he knows what happens to me.

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