8 Important Facts Everyone Should Know About Migraine

I have had migraines since I was 30yrs old and will be 69yrs old this month. I have tried every trick in the book to get them under control. I was having them at first about 2 times a week. I took Imatrex injections the pills where not out yet. The shots where not covered on my insurance then so I tired not to use it often. Very expensive and we where raising 3 kids so money was short. As time went by when I started my sixties they where coming every single day. So I went to a headache specialist. But before that I did botox which was a disaster, it made things worse my eyes dropped down and I hardly had any muscle control. Then there was acupuncture another failure. Then chiropractor another failure. Then even got hypnotized another failure. And of course the diet thing.

Finally I have them under control with medication. I take daily Amitriptyline 40mgs at night. Also a beta blocker propranolol 20mgs. twice a day. Sumatriptan 100mgs when Migraine starts. This is helping me to keep the migraines to about every 10 days which is great compared to everyday. I was on Topamax for a while but my hair started falling out and many side effects so we stopped that. Ice always helps me too. Even though I am not having caffeine in my coffee when I get a migraine I will drink a cup of caffeine coffee and it helps. Hope some of this information can help someone. It is a tough life and no one every understands. People think what is the big deal it is just a headache. Let them have one and it will wake them up. Thanks for listening. Linda

HI everyone! I’m new to this site and so thankful I found it. My migraines have gotten pretty much daily. I feel like nobody in my family understands. After reading so many comments I know this site will be helpful. Can’t say much at this time time due to what I call headache hell. I will be back to share my story when I am able. I’ve misplaced my sunglasses-indoor sunglasses. Seems like a crazy life.

Has any other member received the diagnosis of “Complicated Migraines?”
I’ve been hospitalized 3 times over a 2 year period with TIA-like symptoms such as aphasia, disorientation and memory loss. These conditions last at least 24 hours or more with disoriention lasting the longest. All tests for stroke have come back negative each time, and my neurologist says these episodes are complicated migraines. He recommended taking Magnesium and Feverfew. I would love some feedback on this. Thank you for any opinions and suggestions.
Nunziata

Look up Bickerstaff migraine and suggest to your neurologist.

My migraines have gotten worse in the 45 years. Now I occasionally end up in the ER. I take Propranolol ER, Topomax and Trazodone. For the pain, I take Naproxen and Diazepam which often does not help. I have the auras, sensitivity to sound, light. My social life is about nil at this point (I am in my upper 60’s). I spend my days on my couch in the dark. I have daily headaches and migraines that often last a week. My doctors tell me, “See you in four months. Continue with your medicine.” HELP. This is no life. The doc. won’t give me botox because my insurance won’t pay. Any ideas????

Hi rainbow,

Thank you for taking the time to comment. I am so sorry you are experiencing such pain and that migraine has dramatically altered your life. This is certainly NO way to have to live. Please know that you are not alone and we understand what you are going through! We are always here to support you.

It is very frustrating to read that your doctor is not providing you with the care it sounds you are in desperate need of! Have you by chance ever seen or considered seeing a true headache/migraine specialist? Here is some information on how these doctors are so different and making the decision to see one:

https://migraine.com/blog/how-are-migraine-specialists-different/
https://migraine.com/blog/making-decision-see-headache-specialist/

Also regarding Botox, they do have a savings program that may be worthwhile for you to look into which you can save on out of pocket expenses for the treatment. You can click here to learn more about it.

Lastly, try to not to give up hope for better days ahead!! I know it may seem like you have explored all options to find relief, but there are many treatments that can be considered. Here are two articles which discuss the topic of having tried everything:

https://migraine.com/blog/tried-them-all/
https://migraine.com/blog/ive-tried-everything-2/

We are happy to have you part of our community & I hope you find some of this information useful! Thanks again for reaching out & keep us posted on how things are going!

Warmly,
Joanna (Migraine.com Team)

It sounds like you have had to try to take the reins in your own treatment. That is very frustrating. As the Migraine team indicated, you need a neurogist specializing in migraine. I have had to have varying treatments as my body changes, as I also have had them for at least 40 years, beginning in the Caffergot era. I was so happy when Imitrex came out. But now I cant use it since I had a migraine induced stroke in 2002. Now I am in my 60’s & am disabled with intractable migraine. The good thing is that my daily night meds keep it at bay most of the time, and breakthroughs are not very common. I am on Topiramate, Citalopram, and Nortriptiline. This is after long trials & tweaks of meds. You need to feel comfortable with your neurologist. He knows my different kinds of migraines( I have 3). And to treat other headaches that can trigger migraine, besides my most common trigger of barometric changes. Also I am very careful to not take too many meds to prevent rebound so I also use essential oils, massage, cool packs, and very important- hydration. Hope this helps annyone. Even if im disabled from my work(im an ER nurse) I still have a full & happy life.

I get so fed up over here in Australia.All the doctors blame stress all the time for my migraines what a crock.I can be problem free and the happiest woman on this planet and then boom.Stress is just their excuse because they don’t want to deal with the issue ,here take these 35 pills ,and just go away and get over it.I wish someone here would actually care enough to want too investigate the latest info instead of listening to me telling them what is new and then just blowing me off.35 yrs of that kind of care is getting a bit too long ,and I still now get the look from my doctor that says ‘Are you sure you are not over using your medication’ That makes me so irate.I know my migraine patterns and behaviours better than I know anything else on this entire planet.

I’ve had headaches for over twenty yrs I’ve took some meds on and off…Dr called them chronic headaches and wAs on topamax 150mg twice a day worked up to that slowly but didn’t help and I was n brain fog badly like my own lol world I get them several days a month and last several days they r worse I’m seeing Neuro now started getting nausea bad and worse pain taking gabapentin 600 three time day zanaflex at nite proponenolol I think is name of it so it no helping should I get earlier apointment than may? I also have back issues bulging discs several….any advice

I feel I need Mri the pain and symptoms r to much to handle I have a 4yr old and it interferes with everything…I’m n bed a lot hurting way to much the loud noise and lite sensitivity is really bad I see spots vision blurry I hate it

Has anyone else tried a big change in diet? In addition to Topomax and Botox (doing my second round of that tomorrow), I’ve cut out alcohol and gluten. If I don’t notice a difference without gluten after a couple of months, I’m going to see if cutting out dairy does any good. My doctor is adamant that ditching caffeine is important but my morning cup of coffee is the one thing I do not want to let go of. What are your migraine diet experiences?

Yes I do the diet thing. I read labels on everything. So much of the migraines come from all the preservatives in the food we buy. Labels are deceiving they will us other words for things such as sugar free which we know we can have nothing sugar free. One of course is Aspartame which has other names for it. Also when it says natural flavoring it has either MSG or nitrates which is a huge migraine trigger. It is best to it whole and clean food. Hope this helps you.

Definitely have tried diet modifications/elimination diets w/mixed results. Eliminating Equal brand sweetener had a noticeable (positive) impact reducing HAs, eliminating gluten did not. I do feel more energetic, have fewer digestive issues & sleep better when I follow Paleo guidelines-which eliminate gluten, dairy & sugar, but allow lean meat, veggies & most fruits.

Why when there is so much research that confirms migraines are a neurological disorder and often genetic do many disability insurance carriers list them as a mental health disorder? This old view allows them to not compensate people with chronic migraines as long as if they had some other illness.

As a child I had pediatric abdominal migraines, which they didn’t really know about. My parents just thought I was occasionally allergic to chocolate, or nervous about school and so I would have a terrible stomachache. Then as a teenager, the headaches subsided until I became pregnant with my first child and I developed migraine with aura. These stopped and migraines once or twice a month became the norm. In my late 40’s I developed chronic migraines and now I am 64….they are still with me. I take Topamax everyday,200mg. and Botox treatment every 4 months. I have taken everything. All the triptans, beta blockers, nasal sprays, the gamut. Right now I am functioning well. Headaches come and go each week but I am able to control them with pain killers. I think the Botox is good and for me, the Topamax was a godsend. My dad, grandmother, cousin, daughter, sister and brother all suffer or have suffered from this disease. Funnily enough, my son is a neurologist.
He cannot help me. A cure is what we need.

Wow your story is so great. I am so happy you are functioning alright. What painkillers do you take? You are absolutely right, a cure is what we need.

I have read a book my a migraine expert and he said all headaches are really migraines, just some are lesser like a mild headache and others are horrible, vomit inducing, hair raising, lie in bed in the dark massive ones.

Even after the migraine I feel in a fog and extremely tired for a couple of days after the migraine.

I’m worthless the day after a migraine. I think it’s partially because of the medications in my system (triptans, prescription pail killers). I make lots of mistakes on the job the day after.

I heard for years that once I’d gone through menopause I wouldn’t get migraines any more. I had ’em from about age 10 to about age 55 before I gave up on that notion. By then I’d been bed-ridden with a migraine multiple times while simultaneously having hot flashes. Now I’m past the hot flashes and presumably past menopause. But I still get migraines. Oy vey! How disappointing!

Me too.

DinaMay, Your paragraph above mirrors my exact chronological experience and outlook! Although my migraines still exist, they are not quite as severe as when I was really young and had gotten my first one at 10 years old. Back then I would get the scintillating scotoma, severely nauseated and feel virtually debilitated for a couple of days; from approximately my 20s on they are less severe but still there at 56!

I have a combination of heriditary tension-style migraines that are both hormonal & due to very poor eyesight, and I also have chronic migraines due to a spinal fusion that I had after breaking my C-1/C-2 vertebra in my neck, in 1985. All of my chronic migraines & tension headaches have gotten progressively worse as I’ve gotten older, fortunately the migraine drugs have continued to get better. When I was young, early teens, & they 1st started getting really severe, to the point of throwing up & being unable to move, the only medication I had was Tylenol 3 w/ codeine. Then it was Vicodin, & when that stopped working Percocet. All of these just dulled the pain & made me even more nauseous than I already was. Then finally in 1999 a doctor gave me a sample of this new migraine drug called Imitrex & I thought I had discovered gold, especially since it was the price of gold at $128 for 9 pills. My parents filled the prescription as a birthday present for me that year. I laugh now, when I think how low that price is compared to what I have payed for other new migraine drug treatments since. I’ve lost jobs, relationships, had to cancel so many events/trips. I’m no longer someone who plans things farther out than 2-3 weeks in advance. I am now self-employed & only work a few days per month. My husband has to support our household. But I am constantly searching for new treatments that will hopefully give me some sort of relief. I mix both eastern & western medicines hoping something will eventually work. I try to stay positive & laugh about things, if you can’t laugh…you’ll just cry….and crying gives you a headache! 😉

I’m going through pretty much the same thing. As I get older, my migraines are getting more chronic and severe. I hope you find the relief that you’re seeking.

I do believe we could be twins! I too am trying to be “self-employed” on this 2 days a week that I can get out of bed from my migraines.
I have tried EVERY triptan my neurologist knows and have gone up the ladder from the Tylenol 3, to Vicodi and am now at Morphine or Dilaudid. Even though the Dilaudid is stronger I get better results with Morphine. My problem is dehydration. I can NOT keep myself hydrated for longer than about 2 weeks.
I constantly have water (it and Gatorade are all I drink) with me, but with the constant nausea all I can manage is sipping it throughout the day. I end up in the ER about every 10-14 days with a raging migraine that I can not get under control because of the dehydration.
I am so tired of doctors lecturing me about “narcotics not being the way to treat a migraine” that I could just scream. They just keep spouting off “studies show”. Even when I tell them that I am a 31 year study and that I have tried all the other options and that for the past 7 years this is the ONLY way I have received relief they just shake their head. Is any one else running into this??
I am well aware of the rebound headache problem. Careful not to take my pain mess often enough to cause that (hence the reason I stay I bed so much in pain!)
Would love some insight/help on how to deal with doctors who are against using narcotic pain mess in the ER.

Crying gives me horrible migraines! I feel your pain.

I have had migraines for about 45 years now. They have become increasingly worse as time passed, and now I’ve had to give up my career due to my absenteeism. I was told that menopause would help lessen the intensity or even frequency, but I have found the opposite to be true. My migraines were never about my periods anyway, so maybe that is why this time of life isn’t a dream come true? I’m finding that the lack of sleep in particular is making matters worse. It will be good to see how my migraines change when I come out the other side, but I no longer expect rave results. So very happy for those who do!

I have had the same migraine symptoms all my life, (72 years..I am 75, they began when I was 3, with many triggers). If it wasn’t for narcotic drugs, I would not be still living! I am under a doctors care, and always have been, thank God for the two who have treated me! We have continued to try other things….only to have adverse reactions. Indural was my only salvation but now have had to go off of it, or have a Pacemaker inserted in my chest, which I said, negative to…! So now I get NO relief, and am back on my narcotics, reluctantly! I am getting so tired of painful migraines!!! They are all number 10’s! It has not been a wonderful life, only with the narcotics could I have had a decent life! Not sure if this is what you wanted to hear, but I am still hanging in with severe migraine pain!

I am obviously very late to this conversation, but I just found it.
Have you tried medical marijuana? And I only ask because your story is similar to my moms (minus the pacemaker). After she retired she started using medical marijuana and she has been able to stop taking most of her prescriptions and is in SO much LESS pain. Her migraines are down to just a few a month and she is feeling much better. I don’t know if it will work for everyone, but it’s worth a shot.
It’s the first thing I am going to try when I retire. No one should have to live in pain their whole life.

That’s horrible. I feel for you. I have much fewer migraines after moving from Denver to Phoenix.

I had migraines until I went thru menopause.
I found pain killers did not help.
I have not had a full blown migraine in years, which is such a blessing.

I’m reading these later than most were written! But I’m wanting to share what is HELPING ME! My profile matches most those above…60’s, migraines ALL my life, since childhood. Have done all the drug therapies, also PT for neck and shoulder exercises! But for one year now I’ve been using the CEPHALY device!! It helps!
Invented in Belgium, EU has allowed for years, our FDA approved it a year ago. My insurance wouldn’t pay; but I figured $350 out of pocket was worth a try! Go to the cephaly.com/usa site to check it out. My Neurologist in Seattle told me to try it! I put it on for 20 mins. programmed session when I go to bed. Lie on back and often FALL asleep before it’s over! The 3 beeps when it ends wake me up! I remove device, Then roll-over asleep!
Since beginning, I’ve been able to go off TWO MEDS I’d been taking for 25 yrs! Topomax & Amitriptyline!
Frequency is down!
I recommend to all who want a new approach! It emits a slight electrical impulse into the forehead. At first one may need to build up tolerance to full programming. It starts building for about 12 minutes, then plateaus and maintains impulses for remaining 8 mins.
One can adjust the intensity to their own tolerances as needed.
Hope this helps even one person!