Welcome to the Migraine Community 😊

Discuss migraines, auras, headaches, and medication therapy.

Welcome! This is a place to introduce yourself and meet others in the Migraine Community.

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I have lived with migraines ever since my junior year in high school, when one took me out for a few days. Mine always start with an aura/visual disturbance, that starts off looking like the blindness you experience after looking at a bright light, then leading to wavy lines that cover my entire field of view. As soon as that starts to clear up, then the worst symptoms start—extreme nausea, head pain (over my right eye), and sensitivity to light, sound and movement. I have to be in a dark room for hours and hours. When I was younger, it was a day or more. Now, thankfully, it’s more like 4 or 5 hours.

In general, my symptom sensitivity has declined as I get older (I’m 52). My father and mother didn’t have migraines, but my Dad had (and his Mom) had aura—the visual disturbance part. I hope I don’t pass this on to my kids…

How about you?

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I have debilitating migraines frequently since suffering a traumatic brain injury, via auto accident in high school. Lucky, I have sum pretty strong medication to alleviate the pains; however, I use it only in extreme cases, as I don’t want to become immune to its effects. I get tightness in my head, in various places, which is a good sign that a migraine is forthcoming, unless I withdrawal from the symptomatic stressors. I’m very blessed as my brain has trained my body in recognizing and repairing the circumstances that cause my head to hurt. Additionally, being aware of limiting my exposure to said circumstances helps me not to worry about another migraine coming…

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I have a friend that has migraines all day and everyday. Doctors don’t know why

Hi, my name is Karin but I prefer to be called Hector. I’ve had cluster migraines for over 20 years now. After a million tests they were able to find I also have intercranial hypertension which contributes to the migraines. They have tried many different medications and I’m finally on one that seems to be working (Zonisamide). I still get frequent migraines but now most are not to the intensity I had before being put on this new medication. My Dr also is an advocate of several vitamins in my regime and I know without a doubt they have helped. My Dr suggested several dietary changes which I struggle to follow but I’ve realized when I do have a food or drink on the list she gave me it does usually lead to a migraine within 6 hours. I get frustrated often because I feel people do not realize what it is like to live with severe migraines on a constant basis. Why I don’t go outside a lot because the sun kills me. Sometimes it seems just the little things (which are big to me) are enough to set me off. If you met me on the street you would probably assume I didn’t have a care in the world because I have such a positive outlook on life but if you took the time to look deeper you would realize the pain I’m in and how hard I try to deal with it on my own.

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Hi Jonathan - nice to meet you. I can relate to the visual disturbance which you experience. Sometimes I will get this stabbing pain right by my left eye and then everything goes dark for a brief moment. I cannot handle any type of sensory input when I have a migraine. Any type of sensory input sends me over the top so I try to isolate and be on my own why I’m that bad. I carry my nausea medication every place I go! Ever since my last traumatic brain injury in 2008 I experience extreme nausea on a near daily basis - which is very hard to deal with. I have always had a problem with the sun and bright light ever since I was a young kid but I did not have migraines at that time. I believe that my intracranial hypertension (which is said to be hereditary) and my numerous traumatic brain injuries are what have made my migraines as severe as they are. I’m glad to hear yours are getting better. Are there any special things you do to help yourself?

In peace, Karin

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Likewise! It’s nice to meet you. I’m so sorry to hear about your cluster headaches. My migraines are relatively infrequent (maybe 10 times a year), so I haven’t felt motivated to take daily medicine (although I hear there’s a new monthly injection that’s supposed to make a big difference for people with cluster headaches). I think I’m a little like you, I’ve always shied away from bright lights and loud noises, even before I started getting migraines. I wish I knew why mine seem to be getting less severe over time—so I could share! I think part of it may be I’m much more aggressive about treating them when they’re coming on (as soon as I see the aura, I immediately swallow two ibuprofen, and if it’s morning, make sure to have coffee to eliminate potential caffeine withdrawal). I have a good friend who’s a neurologist… he told me an interesting statistic: neurologists are 3x more likely to suffer from migraines than non-neurologists! Because they’re so interested in solving their own problems… I wish you all the best, and hope you find a good strategy. Thank you so much for sharing…

Hi my name is Elizabeth I have three different types of headache conditions since 2003 after the birth of my son hi my name is Elizabeth I have three different types of headache conditions since 2003 after the birth of my son I have two neuromodulation stimulator’s which have greatly helped and I am currently trying a new medication called Aimovig. My pain can run from minimal to days on end frequent nausea very poor site good days are great bad days are miserable.
This is not the life I wish I had but it’s the life I’ve been given I try to stay positive and live each day that feels great to the fullest

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Hi everyone! My name is Nicole. I suffer from Chronic Migraines and Tension Headaches. For years I battled up to 15 migraines a month, and daily headaches. I take 2 medications daily for prevention as well as a small handful of vitamins. And for a while was a frequent visitor of Urgent Care for when my Relpax or Sprix Nasal spray failed to alleviate my migraine symptoms. It wasn’t until a year ago that my doctor and insurance approved preventive botox injections ever 12 weeks that I finally found the relief I was looking for. My migraines were so severe I was missing out on weeks of work throughout the year, using up all of my sick leave and PTO to no avail. Now I have on average less than 3 migraines a month, all of which are taken care of by my meds at home and I get to use my time off at work for vacations and time with family! I can say now that I hold the reigns on this chronic illness and I have my life back! Migraines are awful and after years of suffering I know the pain people go through and its nice to finally have my life back!

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Yes I have suffered with near daily migraines for over 14 years. Mine is result of chemotherapy and hormonal. I’m older and they are getting better so that should be good news. I’m a bit of a night owl and I believe that’s because I don’t like waking up every morning with a serious headache or migraine so I just let the day keep going while I’m feeling halfway decent as the day goes on. I feel for you and understand how it truely effects your daily life.

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Flash of lights set off my migraines. I have to wear sunglasses when I drive to avoid it.

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My migraines finally became so bad that i was actually “going blind”. They finally said they were seizures and put be on Toprimax which has controlled them except for some breakout ones. Have you checked to make sure that you have removed trigger foods from your diet. I am 75 years old and do not have to worry anymore about an active lifestyle. I feed the homeless on Fridays and that is all i do.

H! I’m Samueletta (Sammie). I have suffered with migraines for about 20 years. I’ve been to many classes and have kept journals. At one time, I was up to 27 a month. For several years, my doctor gave me Vicodin. I started having side effects from Vicodin and they also stopped working, and I was taken off of them. My doctor retired before we could find a replacement medication. I did some online research and found nothing but Botox. So I find it interesting reading about the medications some are taking.
My current doctor wanted me to go back to classes and to take an MRI. I declined both. I’ve been to the classes and I can not suffer through another MRI (claustrophobia). As a result, she told me to try B2 Riboflavin and magnesium tablets. I started taking 200-250mg of each twice daily about 5 years ago. I also stopped eating meat and lowered my carbs from 80mg daily to 25-45mg daily. My migraines have decreased in frequency (about one every 2 or 3 months) but have increased in severity and length. As a matter of fact, I am sitting here practically disabled with a migraine I’ve had for 2 days. I take a Tylenol 3 when I get one this severe. However, it only helps for a few hours. Thank goodness I no longer get the nausea, but it is blinding, light and noise intolerant pain.
I do have a drug sensitivity that makes it difficult to find the right medication for any of my afflictions. So I try to stick to vitamin supplements. But supplements do not help these tidal waves when they hit.
I am going to jot down the names of the meds I see here, research them, and see if I can get my doctor to prescribe something for me without doing another MRI.

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Hello Everyone!
I have struggled with Migraine Headaches since I was a child. They are quite debilitating when they come. Most of the time I wake up with them, but occasionally they will appear during the day. I suffer from the ones that sound is amplified, nausea, and bright light is painful. Since I have become a senior citizen I also have the painless headaches that have the wavy lines and distorted vision. I have never been able to track what causes them, but I have been advised to stay away from red wine (which is not a problem) as the red wines are said to bring them on. I look forward to interacting with y’all.

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I was wondering if elevation bothers anyone’s migraine symptoms. I travel to my mom’s where the elevation is about 5000–8000 higher than where I live. I ALWAYS get a migraine when I’m there. I’m never stressed. I always have a nice time. But I always know to take my medication with me.

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I find sitting for long periods of time bring on my migraine’s. Especially if I don’t get up and walk and stretch. Hot showers and cold showers relieve my symptoms. Of course along with my medication.

Have you tried Toprimax. It is the only drug that has ever worked for me.

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Hi All! My daughter and I have a mitochondrial disorder, which can include frequent migraines. We’ve tried a number of medications, Topamax included (neurologist warned us Topamax was only effective for some… didn’t help).

Wanted to share a study we ran across a year or so ago that has made a huge difference for us: https://onlinelibrary.wiley.com/doi/abs/10.1002/ptr.4996 The study revealed that ginger can be as effective as Imitrex for migraines, and that has very much been our experience! Ginger does nothing 50% of the time, as does Imitrex. The effectiveness of ginger is greater than that of Fioricet, for our chemistries, anyway.

We’ve learned to hit oncoming migraines with ginger first… ready to treat with an Rx 17 minutes later, if the ginger is ineffective. If it is partially effective, we add a second dose of ginger. Like I said, only works 50% of the time, but at least we don’t deal with the dry mouth & wooziness from migraine Rx’s, when it does!

For management, I gotta say that Riboflavin and Magnesium, consumed daily, drastically decrease frequency.

~Wishes for some degree of relief, to all!

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How do you administer the Ginger? I am always looking for non pharm. Answers.

I’m so sorry to hear about your friend’s challenges with migraines. Please feel free to invite them to the Community anytime. Even when we don’t have answers sometimes, having a supportive community can still help. :)

–Ivy
Community Manager, CareZone

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