Riboflavin - anyone tried it?

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Hi there, I'm a chronic migraine sufferer who, unfortunately, is also sensitive to the side effects that come with the popular prevention medications such as amitriptyline, topiramate, propranolol etc. I am just coming off the latter after being on it for a year and having gained nearly 2 stone and suffering from insomnia, mood swings to name but a few! My GP has now recommended that I try Riboflavin, which is a supplement - Vitamin B2. I've been given 500Mg to take a day - just wondering how long it's likely to take before I see any possible improvements or help from it?? Thanks.

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  • Posted

    I was taking riboflavin, coQ10 and magnesium supplements when I eliminated all of my prescriptions.  Unfortunately they didn’t help me much, but everyone is different.  I stopped those when I got into a migraine cycle that I couldn’t break and ending up doing nerve block shots.

    I’m seeing a new neurologist (I’d been to the same doctor for 10 years for chronic migraines and felt like we’d exhausted all of her options so I was trying for someone with a fresh look). She wants me to start butterbur and milk thistle and also take riboflavin.  I haven’t tried those yet.

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    • Posted

      Thank you for your reply, I have heard of milk thistle and magnesium helping some people. I must admit like you, I feel my GPs have exhausted their knowledge and it always seems to end up with them handing me a prescription for something else without ever really looking into the cause, but what can they do in 10 mins that you're allowed eh? I've seen a neurologist, all she said was to try and stop relying on Triptans and try mindfulness and propranolol. I've tried both and they work short-term but then inevitably stop working after about 6 months. I am also perimenopausal so feel this is also an issue...

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  • Posted

    Hi Susiebell,

    You sound exactly the same as me, I have given up on all the prophylaxis, tried all the ones you mentioned and none of them worked.  I also tried riboflavin a year ago and it was recommended I took them with magnesium aswell, after 6 months unfortunately no change so I came off them.

    I am now on a radical diet recommended by an American doctor and fellow sufferer, whose book I can let you know about if you want, don't think we can advertise freely on here, but I can PM you.

    It's basically gluten free, alcohol free, chocolate free, carb and sugar reduced, sounds drastic but so far halved my attacks after 3 months and lost a stone in weight.

    Your body eventually gets used to the cravings, esp' the chocolate, which is the hardest for me, although you can have white chocolate in moderation.  I also feel better in myself, mainly because the attacks have reduced but it's a healthy diet kicking the wheat.

    Good Luck

    YL x

     

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    • Posted

      Thank you for your reply! Someone else recommended that I should look at my diet and try cutting out gluten to see if that helps. Thing is, I tried a gluten-free (vegan) diet a few years back and although I felt amazing on it my headaches and migraines, although slightly reduced, came back eventually. I may look into it again though so a PM would be fab! Thanks 😊

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  • Posted

    HI I have being taking riboflavin (vitamin B2 ) since December 2017. Unfortunately it did not help my chronic daily migraines. I have tried all the prevention medications  but all had very bad side effects. I have also gone into hospital twice for inpatient treatment but that did not help either also tried 7 rounds of botox with no results. It is very expensive here in Ireland as my health insurance would not cover it I started having acupuncture a couple of months ago and i was getting some pain relief. Unfortunately 3 weeks ago i got very bad pain on the left side of my head also my ear eye dizziness severe nausea ans a swelling behind my right ear and alloydynia as it hurt to put my head on the pillow. I went to hospital to out of hours gp.She said she did not know what was wrong.,that I was too complex a case.I only got to see my neurologist last Thursday. He said all the symptoms were due my migraine as it had gone through the roof due to the sudden death of my very beloved 95 year old Mother in January and my very ill brother in law having to go on the heart transplant list as the can do no more for him. I started on ZONEGRAN 50 mgs daily  yesterday going up every 2 weeks. I also take naproxen 500mgs 2 daily when needed as i also have osteoarthritis in both my knees and feet. I will see how i get on with the new tablet. My headache doctor feels that CGRP will be the answer for me when it becomes available in Ireland. I am 64 years old and have had migraines since I was 12 years of age.I am lucky my very kind brother lives with me as neitherof us married and he too early retirement to help me care for our late Mother. Hope something from this will help you everyone is different . Let me know if you get any relief from your pain.
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    • Posted

      Hi Joan well I haven't heard of CGRP do you know much about it ? I've tried everything over the last 20 odd years (I'm 61) I was always told my migraines would stop after the menopause but no such luck ! Sorry to hear of your recent sad loss - as you say any stress etc makes the migraines much worse. I've just started CBD oil from simply cbd and I'm slowly building it up - so far so good in that I've had a couple of migraines in that time but instead of them lasting three days have only lasted one and I haven't had to take any naproxen, I take triptans but usually have to take three over the three days, I don't like taking them and I know they are not recommended for over 60's but nothing else works.

      Interested in butterbur I can't remember trying that, have you ? 

      Sending my my best wishes x

       

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    • Posted

      CGRP is the first preventative for migraines. All the others have other indications and were just used for migraines. It is calcitonin gene related peptide blocker. It will be in injection form and pills. I was in a clinical trial recently with one type. They were trying pill for acute use instead of preventative. It helped at first for a week. Then it quit helping as much and they would not allow me to take Triptans. I had to drop out because triptans are the only thing that work for me.  The pill took 2 hours to work which was unacceptable for migraines. They’ve had better results with injection preventing them. Few side effects. Triptans make me feel badly. Two companies are supposed to come out with CGRP injection this year. I live in US where drugs often cost a lot as well as care. You get good care only if you can pay for it. Sad that capitalism has made profit the goal of our healthcare system. I can afford good care and am lucky but many cannot. Migraines have been under researched due to the fact that most research has been done on men’s diseases with men. Gradually things are changing. I have a pharmaceutical background which has been helpful. 
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    • Posted

      Hi and thanks for the info, i remembered I had read an article about it in injection form but as I understand it it's not going to be available in The UK any time soon. I hope you do access it and it helps you, all the best X

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  • Posted

    I’ve tried all the diet stuff like vitamin supplements, gluten free diet etc. I’ve also tried all the preventatives. They didn’t help much and all cause side effects. I’m waiting for the first preventative just for migraines, CGRP drugs. They’re supposed to be out in 2018. 

    I get  them almost every afternoon when the Barometer Pressure drops. 

    This is sounds crazy but a doc told me to try sucking on ice when they start. For 2days now, it has worked. You have to do it for a while. I’m carrying ice with me. We’ll see how it goes. 

    Triptans work but but I can’t get enough of them with having so many headaches. And they cause side effects. 

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  • Posted

    Hi there

    I have been taking riboflavin for two months, 200 mg twice a day and intend carrying on taking it for the time being.  I bought mine from Holland and Barrett, but Amazon do them also.  I take Candestarten as a preventative.  I have been having chronic pain since January, but the last month or so I am at last feeling so much better.  I have had acupuncture and physio on my neck and shoulders for the tension, having paid for these treatments myself. 

    Of course I do not know exactly why my migraines have improved.  There is no way of knowing.

    I would suggest though riboflavin is worth a try and give it says three months.

    I really hope you see improvements soon.

    All the best

    Chris

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  • Posted

    Hi, there. You mentioned you are perimenopausal. Therein may lie the crux of the problem. Try natural progesterone. It is amazing. You can start with the cream and see how that goes. The hormonal fluctuations are what cause the migraines. Drs don't really know how it works, but we typically produce less progesterone as we age plus if we are under stress pregnenolone gets turned into cortisol, rather than progesterone. B2 by itself I don't think is enough. I take several vitamin and herbal supplements. 5htp is a serotonin supplement. Migraineurs tend to be low in serotonin. It also helps with sleep and to even out moods. Start with 50 mg per day and see how it goes. You can get it otc. Also, I take magnesium and feverfew and they have worked great for me after all the meds failed miserably. I truly think stress and hormones are the two main players in migraine followed by diet. 

    It will take about 6 weeks to see improvements. Hang in there and keep us posted. Keep in mind, B2 is water soluble and whatever the body doesn't use goes out in the urine. 

    Hope this helps. Feel better and keep us posted.

    Patricia

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  • Posted

    Hi Susie I have just started taking high strength B12,B6 and folic acid, have read they can make you drowsy. I also take Magnesium at night as they relax me, Q10 and Flaxseed oils. Have lacto free milk, gluten free bread and have reduced sugar and carbs, given up caffeine. Am also sensitive to Amitryptyline and have spent the last 6 months tapering am now down to 2.5mg, awful meds. Have had 1 hemiplegic migraine in 6 months, used to get them all the time.so not sure what is working. Good luck to you, I have only just joined this forum and am shocked with how many people I can relate to, I used to feel so alone with this.
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