20 year old Daily Chronic Migraine sufferer, I need a light at the end of the tunnel!

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Hi guys! I've been suffering from migraines since I was about 13 (I'm 20 now). My mum had migraines and so did my nana and my grand grandma and my auntie on my dads side so I don’t have the best genes! But for some reason in the past 3 years my migraines have turned into an even bigger monster than any others in my family’s history. I’ve had one every single day for just over 2 years. The last time I can remember actually properly fully not having at least a headache was 3 amazing days in september 2012. But then I was just back to ‘normal’ again and it was heart-breaking. I think the blame lies in the trigger of fluorescent lights in all my educational settings, obviously because of this I'm in constant pain, in school, then when I went to college and now that I am at university. Through this the doctor recommended migraleve (why a doctor would offer an addictive drug to a teenager in chronic pain I will never understand) and obviously for the first time in ages I was free from pain. Clearly that was going to bite me in the butt! So I used them within the stated dose but probably a little casually with paracetimol and ibuprofen and somewhere along the way I have created a transformative chronic migraine (this is my theory anyway it is all very confusing because my gp was awful and I didn’t have any other support other than my mum who is a dr but in a different field)

Ive been on and off different contrecptive pills for two years until my gp discovered I have high blood pressure. My mum also has high blood pressure but it was only picked up on when she was in her early 40s. BUT when she started taking her high blood pressure medication her migraines WENT AWAY COMPLETELY!! HEAVEN!!

One of my questions is has anyone else had a similar experience with blood pressure medication? I haven’t started taking mine yet as I do not want to take too many meds at the same time but its called RAMIPRIL

Whist all this drama with the migraleve and contraceptive pill was going on I started university and was trying out different preventative drugs none of which made any difference at all except making me put on weight. I’ve tried propanol, amatritalyne and pistofen. I’ve also had an MRI and that’s all fine. Also to be clear, I’ve had a 4 month period from December 2012 of absolutely no medication at all, (except about three triptans) to try and break the rebound headache cycle but there was absolutely no change at all. I didn’t even seem to get the “worse before it gets better” stage everyone always talks about. So I struggled on, on my own. Then after literally years of trying I got referred to the neurologist, who turned out to be a total bully and just repeatedly told me I was stressed and that they were tension headaches, he told me to have more baths (!) and try to relax more. As I’m sure all of you can imagine after waiting so long to get an appointment I came out absolutely distraught that he hadn’t even understood my condition and cried in the car park and all the way home. However I managed to get another appointment 5 months (Christmas time 2013) later with a more senior neurologist who has now asked me to completely stop all analgesics (so no paracetemol for me! And I had already stopped all codeine products) and gave me Topamax. I’ve been on it for just over 2 months now and I’m up to 150 (going up to 200 very soon) I’ve only had very minor side effects that I’m more than happy to deal with if the medications works but I haven’t felt anything in relation to it easing my head yet! sorry for the life story but I'm getting desperate!

What does it feel like when it starts to take effect? Is it obvious?

Have there been any success stories from any chronic daily migraine sufferers on Topamax?

Also I’ve seen on here that some people are on a combination of preventative drugs, if Topamax doesn’t work what step should I take next? Because my drs are hopeless and don’t seem to actually know anything about migraines

Also does anyone have info on the “migraine surgery”? Would my type of migraine respond to the surgery?

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11 Replies

  • Posted

    Hi EllieV. Ugh. I hate migraines. Mine started after a car accident in 2008 when the whiplash at C1/C2 was so bad I thought it was over for me. But it wasn't. And it was the start of migraine. I have had a lot of doctor appointments for this and some of their prescription recommendations have been helpful and others not so much. One thing I found fascinating is a conversation I had with a headache specialist NP. She had said that there are 12 different causes for migraine in the body. That is why a medication that works for some people may not work for others. If the medication you are being prescribed is not working on the right cause, you won't get the relief you are looking for. This blew my mind. Why hasn't anyone else shared about this? And you have to find a provider who is wiling to work with you to go through all of these and hopefully end up finding what is causing yours. There may be more than one cause. I have wanted to go back to her and ask her more about this. I have tried to search this online but don't have all the info I would need to make a proper search.

    I will say - while I was charting to see if I was a candidate for the BOTOX injections (our insurance plan requires that we chart for three months), I was so beside myself with migraine that at the recommendation of a friend I went to talk with an natural-path. She uses quantum biofeedback. I was open-minded enough and miserable enough to give it a shot. I knew after the accident my nervous system was caught in "fight or flight" mode and since the quantum biofeedback is energy based I could grasp how this might be helpful. And it really has been.

    I recently had an accident at work and the migraines have returned. These feel more structurally based (coming from my neck versus being more vascularly based), but I suspect I may need to visit that NP and get more information about those 12 different causes if I cannot get them to resolve. It is awful that it takes so long to figure out the right treatment and/or medication since every single day is a challenge. Nothing steals my joy more than migraines. I have had other health issues that can ramp up to be rather painful, yet I can still think enough to do my job. But bring on a migraine and ugh.

    I am currently giving dry needling a try. I just had the first session so not sure how effective it will be. It did trip off some of the pain patterns I have with migraine, so I am going to choose to be hopeful.

    Compro (a suppository medication used primarily for nausea) really helped break my migraine cycle. However there was one side effect that it causes in me that really gives me pause. If I get desperate I will use one and deal with the side effect. I just can't do this often. It was also suggested to me that maybe I could use just a half of one? I am leary - but at least I know that if I get really bad - I have something that does work.

    Ellie - have you ever had any trauma to your body that you might connect to your migraines? Do you think they may be hormone based? All of the relatives you listed that have suffered from migraine are female. Do you know if their migraines improved after they went through menopause? Just a thought? I do hope you know that you are not alone. Keep seeking treatment and demanding answers until you get relief. It has helped me to just focus on one day at a time and not think that these will always be with me. That gets a bit overwhelming :-) I am glad you reached out to this forum. It helps just to know others are here for you and understand. Sending hugs and hope :-)

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  • Posted

    Hi Jules, Thanks for your reply! Ive never had any trauma of any kind! Ive never even broken a toe! I just began suffering more and more during high school in the mornings and it just got worse and worse from there. Theres been some question about my hormones but I've been off all contraceptive pills for a period of four months last summer and I'm off them right now and there doesn't have seemed to be any change in my headaches at all.

    My mum questioned whether her migraines went away with menopause but its difficult to tell because as i said she went on her anti hypertension medication in her early 40s and this seemed to have an effect on her migraines. don't think i can wait that long anyway haha! my auntie is still suffering very badly and has very bad periods of depression from her migraines and i think she has probably gone through menopause. However its probably worth noting that my migraines are quite different from any of the ones in my family history as i don't get aura or vomiting like my mum or relatives. I just have very bad pain and strong sensitivity to light, smells and noise with a bit a nausea as well but I've never actually been sick.

    Yeah day to day is best for me too but I'm a very ambitious person and I study Fashion design so obviously I'm constantly looking to the future. Hopefully I'll find something that will make a difference for me soon! thanks for all your advice!

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  • Posted

    Hi, Interesting to read your story.

    Firstly, I would strongly recommend you do NOT take Topiramate or Topamax.

    I have suffered from migraines since 1988 and by means of self-diagnosis I discovered that I had an intolerance to certain foods. My history regarding this is as follows:

    1988 - Started having episodes.

    Identified coffee as trigger and suspected fluorescent light.

    1996 – Badly dehydrated during half marathon.

    Thereafter, I noticed that I got headaches when I hadn’t drunk water for a while.

    Started to take Disprin to reduce or alleviate headaches

    Attended GP on several occasions only to be told there was nothing he could do and to continue to take Disprin.

    I started a food diary and over several years identified triggers.

    2010 changed GP and she suggested Disprin was not the answer and prescribed me the following:

    Maxalt Melt 10mg Oral Lyophilisate wafers (rizatriptan benzoate).

    If taken at the start of an episode the headache can be away in 30 to 60 minutes. If not, headache can remain for up to 3 days at various levels of severity throughout.

    Triggers

    Caffeine

    Cheese

    Nuts

    Chocolate

    Alcohol (Even small amounts)

    Yoghurt

    Citrus Fruits

    Fruit juices

    Raisins

    Bananas

    Custard

    Canned soups

    Tyramine

    Dehydration

    Lack of sleep

    Too much sleep

    Missing a meal

    Fluorescent light

    Also, more episodes recorded in winter than summer (No episodes during 2 weeks in Florida).

    However, In March 2013 I was then referred to a Neurologist and given Topiramate to take. I did so and the frequency of headaches reduced slightly. However, I started to get pains in my stomach in April/may 2013 and attended my GP. She referred me to have a colonoscopy, which was normal - a colonography, which was also normal - and an MRI scan, which was also normal. I was still experiencing severe pains daily.

    I then started to try and work out what might be causing this and stopped taking Rizatriptan (Maxalt Melt) when I got a migraine but after 6 weeks I still had the stomach pains. I then stopped taking Topiramate and within a week the pains had reduced considerably. I have since had another colonoscopy which again was normal. However the consultant, this time a Gastroenterologist informed me that the likelihood was that Topiramate has damaged the nerves in my bowel and that the nerve endings were now hypersensitive. I still have pain but very much reduced. I have also started to take Rizatriptan again with no problems.

    Hope this helps.

    Ronnie

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  • Posted

    Hi thanks for the reply! Interesting to read that so many foods can trigger your migraines! and I'm sorry to hear about your horrible side effects of topamax

    I have gone through with various gps many different foods that could be causing my migraines, but haven't found anything to make nay difference. I don't eat chocolate other than very occasionally (like at christmas if it is a gift), I cut out cheese for a couple of months with no change, I drink about once a month sometimes less (and obviously since I'm twenty I've only been drinking for about two years of my seven year migraines!)

    Fluorescent light is a major and horrendous trigger of mine, and they are so difficult to escape, But i have recently got some tinted glasses (green) but they are yet to arrive so I'm not sure if they will work but fingers crossed.

    In regards to the Topamax, why are you so strongly against me taking it? as I have only had very mild side effects so far (tingling, smaller appetite, slight sickness) and have been taking it for near two and a half months. and to be honest my migraines debilitate me so much I think i could deal with some of the side effects if it actually made a difference (although yours did sound pretty horrific!) You mentioned it made a slight difference do you feel that if the side effects had been more mild it would have been worth it? Thanks!

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  • Posted

    Hi Ellie,

    I can only comment on how Topiramate affected me. I'm aware others take it without experiencing stomach pains. I had to come off it as pain was debilitating. I've not been able to work since last May because of it. I do get more migraines since I've stopped taking it but if I take a Rizatriptan quick enough the migraine goes away.

    I only want people to know that if they are taking Topiramate and experience abdominal pains that it could be the medication. If you Google Tyramine and read about it as it's what causes most of my migraine problems. It could be the case for you too. You would need to stop taking all foods with Tyramine (as only one can cause it) for a period of time and see what happens. I've been researching this for 26 years now and have tried everything. Good luck. Ronnie

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  • Posted

    thanks! I will watch out for it and stop taking it the first sign of any trouble! for me because my migraines are continuous taking rizatriptan when i feel one isn't really an option as i would have to do it almost everyday sad but it works great when i do take it

    Thankyou though its so helpful to be in touch with other sufferers, its the first time for me to reach out as the last few months for me have been particularly hard.

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  • Posted

    I used to suffer horrible migraines when I was younger. Through trial and error, I found a combination of ways to reduce the frequency and severity of my migraines. I posted this a while back on a different thread, but I hope it helps you get some relief.

    1. Stop eating artificial sweeteners. The ones you most want to avoid are aspartame and sucralose. Be sure to read the ingredients to everything! Often, products don't mention that they contain artificial sweeteners anywhere BUT the ingredients list. If you see a label that reads 'Contains a source of phenylalanine', best to avoid it. Don't forget to check the ingredients on your medications as well!

    2. Keep away from foods heavy in nitrates. Cured meats or heavily processed (usually inexpensive) meats can trigger migraines. If you can't go without bacon or sausage (Lord knows I can't) then buy good quality and eat in moderation.

    3. Be careful with red wine, aged cheese, chocolate, or activated yeast. Some or all of these may trigger headaches... everyone is different. To see if a specific food is a trigger for you, either keep a headache/food journal and look for patterns, or try each item by itself a few times (the same way you introduce foods to infants to check for allergies).

    4. Be aware that caffeine withdrawal can mimic the feeling of a migraine. This is why so many migraine medications contain caffeine. Consider switching to decaffeinated coffees or teas.

    5. Try Botox. Sometimes what starts off as a tension headache can snowball into a migraine. I tried Botox in my forehead several years ago and within three days went from being affected over 20 days a month to no migraines for five months. Some doctors specialize in Botox for migraines but I've always gone to regular dermatologists and had the Botox injections where I notice I start to tense up when a migraine is developing.

    6. Be careful with your environment. Smoke, perfumes, air fresheners, and bright lights can be a trigger. Try unscented laundry detergent, unscented hygiene products, and you might want to try letting someone else take the wheel when you have to drive at night. For me, the lights of other cars flashing off mirrors and through trees can trigger a headache.

    7. Control your nausea. If I feel a headache coming on, sometimes I can keep it from turning into a migraine by controlling the feeling of nausea that usually accompanies the pain. If you can make yourself vomit, do it. It's unpleasant but I find it usually helps. Then, take an anti-emetic like meclizine and a pain reliever. Try Sumatriptan or a prescription migraine pain reliever like Fioricet. I've tried Topomax and while it helped a bit, I got more relief from Botox and controlling my diet and environmental triggers.

    8. Try a low dose anti-depressant. Often, this will help with the pain even if it doesn't stop the migraines completely.

    9. Try alternative therapies. Acupuncture, acupressure, massage, meditation, biofeedback, or even cold packs on the back of the neck work for some people. Everyone has different triggers and different therapies will work better than others.

    DON'T GIVE UP! Find what works for you! Also, don't let a doctor bully you into accepting less than optimal care. If a treatment isn't working then it's their responsibility to work with you until you find one that does! Your individual treatment plan may take some time to fine tune but the frequency of pain and quality of life you're describing is unacceptable.

    Good luck, my thoughts and prayers are with you!

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  • Posted

    Thankyou so much for your reply, a lot of what you have mentioned definitely applies to me like the lights, and tiger balm is one of my alternatives to meds that i absolutely love! also simple distractions, like being with my friends help too.

    Id never heard of botox helping migraines until reading this thread yesterday, it confuses me a little that no doctor has even thought to mention it to me this whole time when it seems to help so many people! I'm willing to try anything even if it means spending money. thanks again for all the advice its all very useful!

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  • Posted

    Unfortunately, that happens often. After decades of migraines, never once has a doctor ever suggested Botox to me. Even after I'd tried it with great success, when I mentioned it to my GP, he just shrugged.

    I read a magazine article about it once and put it out of mind for years. It wasn't until the headaches were so bad that I could no longer function normally that I tried it. I thought that if it didn't work, at least I'd have a few less wrinkles but that I was ready to try ANYTHING. I went to a regular dermatologist and just got "a wrinkle treatment". It cost 120 euro (in Germany). When I feel a migraine coming, I tend to squint and the muscles in the center of my forehead tense up. That's where I got the injections and it worked immediately. I was paying hundreds a month for prescription and over the counter medications so, although the Botox was a bit pricey, I ended up saving money in the end. I hope you find some relief soon!

    Good luck!!!

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  • Posted

    Thats very interesting I'm definitely going to explore it further, thanks
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  • Posted

    I've tried these and they did noting for me, apart from take th fizz out of my pop, they numb nerve endings hence flat pop feeling.

    They may work for you give them a go, I had some kind of man flu symptoms every so often, where my body would ache for a day, and would have to go to bed, I think this was caused by the drug.

    I'm now down to try Botox in the next few months ,and a blood pressure tablet from germeny.

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