Migraine Headaches Support Group
Migraine is a neurological disease, of which the most common symptom is an intense and disabling episodic headache. Migraine headaches are usually characterized by severe pain on one or both sides of the head and are often accompanied by photophobia (hypersensitivity to light), phonophobia (hypersensitivity to sound) and nausea.

I've been suffering from Chronic Migraines since I was 8 years old. I am 24 now. When people ask how I deal with it, I reply with "I am use to it". When really I am dying inside. My head is killing me, in many ways. How is it possible for me to survive this, when every migraine stops me in my tracks?
I suffer From Chronic Migraines, Depression, Anxiety, Borderline Personality Disorder, Neck and Back Pain, Hypothyroidism and Polycystic Ovarian Syndrome. Some of these issues cause more pain and disabling symptoms than others, I will admit. It’s what I have to endure through any given day that makes it difficult to work and hold a job. Much less cope or function in general.
While enduring a headache or migraine my symptoms can range in severity. I could have a dull headache allowing me to function a little, Or have a Migraine so severe that I can not leave my bed until it passes. My head throbs with pain along side my head, in my face, my teeth, behind my head to my neck. I sometimes become very nauseous and end up vomiting because I am sick to my stomach from feeling lightheaded or experiencing Vertigo. More often than not I have a Aura as a warning sign. When I do I see little flashes of light in my peripheral and the light surrounding me becomes brighter. I become extremely sensitive to light, sound and smells. Which are three senses that you can not always avoid. I don’t wear perfume and I remind family members and friends to not wear sprays or perfumes while around me. I have blackout curtains in my house, giving me a safe place to rest my eyes from the light. I barely listen to music or watch Tv because of the loud sounds. My dog’s barking can be an issue as well, which is why my Grandmother helps me at times take care of them. My scalp feels tender, as if someone is always pulling my hair. My moods shift all the time. I am very irritable and depressed when I have a migraine and as often as I have migraines, I believe it is a reason why I am depressed. Not only do I experience symptoms during a migraine but I also have a hangover effect. After a migraine, I become more fatigued; Drained both physically and mentally. I had just battled through an intense amount of pain in my head that I can not ever control. The best way I can explain the pain is for you to imagine someone opening up my head, pouring razor blades in, then consistently shake my head around. It is absolutely dreadful.
I have tried to Identify my triggers and what causes my migraines within my environment. It could be the florescent lighting in a grocery store or the lavender scented trash bags we bought on accident.. The pollen from the neighbor's tree or the perfume a lady walking by was wearing. Something I ate, lack of sleep or too much, too much caffeine or not enough. If I get too hot. Don’t drink enough water. A lot of the time I have woken up with a migraine for no apparent reason. It really is hard to determine what all of my triggers are but the ones I can identify, I do avoid as much as possible. Keeping a headache diary has helped me notice trigger patterns but still it is hard to identify what all of my triggers are. I avoid what I can control, but some things in outside environments are uncontrollable. I have changed my diet around repeatedly, hoping that more vegetables and fruits would make a difference. Completely cut out red meats. But haven’t noticed it changing anything. I learned recently from my biological father (Just entered into my life) that he has experienced migraines since he was a teenager. He is now 51 Years old. His mother, My grandmother also endured migraines from a young age up until she passed away.
Currently there is no known cure for chronic migraine, although there are treatment options available for prevention of some types of migraines. It all boils down to which treatment plan is going to work for me. I have tried several medication preventatives including over the counter aids. So far none that sufficed. The very first medication I tried was ‘Topamax (Topiramate)’. I was prescribed that specific medication for roughly 7 Years. My dose was increased throughout the years trying to find a dosage that my body would respond to.
When I moved to a ne city I spoke with my new primary Doctor. We then increased my dosage in attempt to try again. After some time I was referred to a specialist. He prescribed me ‘Verapamil’. Its primary use is to treat Hypertension. Within three days I was admitted into the hospital because I was experiencing Vertigo and My migraines increased severely, along with other symptoms from the medication.. I endured a Migraine Crisis lasting roughly Ten days. I was immediately taken off Verapamil and Prescribed Gabapentin. This medication worked for about a month. I had fewer migraine days, yet still would endure them throughout the month. My dosage was increased from 300mg 3x a day to eventually 900mg 3x a day. I have always kept a migraine diary and was able to see whether or not I was experiencing less or more migraines. I noticed that I had periods of time where I would have 1-3 days a week with a migraine and then periods where I would have 5-7 days a week with a migraine. I have received a Second opinion on my condition and saw a Neurologist in Seattle at Virginia Mason Medical Center. She Increased my dosage and ordered a MRI. She was unable to find a cause for my migraines in the results but was able to clearly determine that it was in fact Migraines that I was suffering from. She has since then prescribed nortriptyline, I have been on this medication for a month now and do not feel my migraines have gotten any better. I noticed that they have worsened in comparison to how I felt while on the Gabapentin. July 19th, 2017 I go back to see my Neurologist so we can figure out what my next option is for treatment.
I don’t have a consistent work history. It isn’t for lack of trying. It really is because holding a stable job entails that I can follow a concrete schedule. That truly is impossible for me. I can not predict when I will have a migraine or how long it will last. So I have always had to call in sick or miss work. So much so that my job was on the line for it. During a migraine my ability to work productively is decreased immensely. I can’t concentrate on the tasks at hand or get them done efficiently in a timely manner. I have tried different types of careers, in hopes that I can find a job that caters to my needs and disability. I do have to avoid certain things, just so I don't trigger a migraine. Most work environments have multiple factors that do trigger my migraines. Such as Florescent lighting, odors / Perfumes from others, Loud noises or using a computer for a long period of time. I do wish to have a job, a purpose, so that I feel useful in some way. I just haven’t been able too, it makes me sad.
I feel like I have tried everything. I feel like I am staring at a brick wall. What more can I do? How much more of this can I take. I've broken down many times, but when will be my last break down?
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I find myself going places in the car and not wanting to get out of the car. I come back home and I don't want to get out of the car. I think it's the only time I spend reflecting. Chronic tiredness from Long Covid plus the immunosupressing meds for my Crohn's is slowing me down but everything just seems a massive effort. I am dealing with the paperwork following my father's death but it's not...
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Wow, it's the middle of the week already!Today is our 11 year anniversary, so we're going out to a nice dinner. I'm losing a lot of sleep these days, hence a wonky schedule and uncomfortable feelings. But I know it will pass, eventually.I hope all of you have a peaceful day, and may good things come your way!

I commend you for seeking out a professional to try to see what can be done for you, but in your case, you will very quickly hit a wall with your neurologist. The fact is, neurologists are not headache specialists. They get very little training in that area. They are not up on all the latest research, and on all the different medications and combos of medications that can be used to treat migraines. Especially chronic migraine. I'm not advising you NOT to see your neurologist for your next appointment, but what I would highly, highly recommend is go to this next appointment, and in the meantime start looking up headache specialists in your area. It normally will take about 4 months to get an appointment with one, but in the long run, you will only be the better for it. I promise you that.
You are right about keeping a diary to find your triggers. You are also right that there are some that are just out of your control. For me, weather is a HUGE trigger, and I can't control that. When it rains, huge, huge migraine for me. If there is lightning, huge migraine for me. Heat (summer time) and bright sunlight will do it. I got the worse hormonal migraines, so I went on BC to stop those.
One thing you can try for the florescent lighting is to buy rose color glasses. They help to filter the light that can trigger the migraines. I have a few pair, and they do help me.
As for your nausea, you didn't say that your doctor has you on anything for it. I'm surprised. I get extremely nauseas with my headaches, and I take an anti-nausea for it. There is compazine, thorazine, zofran. Ask your doctor for something at your next appointment. You shouldn't be in misery like that.
Also, you may be a prime candidate for Botox. Insurance does cover it if your diagnosis is "chronic migraine" which is 15 headache days or more a month. Many, many people find great relief with it. If your doctor has not talked to you about it yet, please bring it up and discuss it.
You don't mention whether or not your doc has prescribed any triptans for you. When your headache gets to a certain level (for me, it has to get to a 7) and I have to take a triptan. Usually within an hour, the headache is mostly gone. They are also good at taking care of the nausea that accompanies those really bad migraines. So if you don't have those, again, talk to your doctor.
I hope some of this has helped. My biggest message that I want you to walk away with is: PLEASE FIND A HEADACHE SPECIALIST. Neurologists can only do about 30% of what headache specialists can. Someone like you needs someone who can work at 100%.
Please keep us posted. And if you have questions, please feel free to ask.
There may have been things I missed. I'm typing this out with a massive migraine myself....so If I did miss anything, just ask again.
I have Cluster Migraines, which are Migraines that last from 1 - 13 days for me, I use preventitive meds, Topomax and Tegretol, and Triptans with a caffeine kicker at onset. I don't use caffeine in my normal daily life, so its kept as a "medication" for Migraine treatment for me. Your body builds tolerances to substances, so things that you use for treatment of a condition need to be kept to a minimum on daily consumption to keep your tolerance down. My case is a bit different as I also have a Seizure Disorder and my Migraines can activate the Grand Mal Seizures so the Combo of 2 Anti-Seizure meds as preventatives are not really an option for me but a "have to" and they work.
I'd ask your Neuro about a couple things: Fiorcet, if you've never tried it. (Its an old school migraine med that works for a lot of folks) Trying Botox if your okay with that process, it is injecting Botulism (a controlled version) into your body. If you're not using Triptans at onset, I'd definitely be trying those, I use injections, there are pills and also sub-linguals. Anti-nausea meds can help, such as Phenergan.
Not to be gross, but, with the Nausea/Vomiting thing....some people don't understand that part of the Migraine Condition is Blood Vessels in your head swelling and causing pressure...if you feel nauseous and actually let yourself vomit instead of fighting it, often times you feel better because it releases some of the pressure in your head, the heaving action and way your muscles and force work, etc. Okay enough of the gross talk.
At onset, treating your Migraine as soon as you have a twinge is key...get those meds in, lay down in the dark, get a cold cloth on your eyes, the quicker you can get it under control the more success you'll have at controlling it.
Know the difference between a Headache and a Migraine and make sure your treating the 2 accordingly, don't just treat every headache like a Migraine. Once again the more you take the heavy meds the more your body builds up a tolerance to them and the less they work, so you don't want to overuse them. As for headaches you have to be careful using too much Ibuprofen or Acetaminophen because they both cause rebound headaches if you use too much, too often. Unfortunately none of this is easy, treating headaches/migraines is a science and getting it right is pretty difficult for patients and Dr.'s. If your Neurologist seems stuck or doesn't want to try new things, I'd definitely see if there is a Headache Neurologist Specialist in your area and see them, if possible.
I think I've thrown anything in the mix that I can think of, yell if you have any questions, I'll answer if I can.
Take care,
Kat
My doctor and I have talked about Botox, I am hesitant. Not sure how I will be able to handle the procedure. I am aware that there are abortive options for when I do ave a migraine crisis.. We found that I am allergic to Sumatriptan.. So any Triptan, I'd think wouldn't be an option? We are going to discuss this during my next appointment.
Yes, you are right. There is a difference between a Headache and a Migraine. I have more Migraines than I do Headaches. At Least with a Headache I can function to an extent haha. I was taking 2,000mg of Excedrin Migraines almost daily. My Primary DR and I worked to wean me off of excedrin. So I could use it when I desperately needed it. She thought that it could relate to why I am having so many migraines, that they could possibly be 'Rebound Headaches'. I don't believe that is the case. It's been a 3 weeks since I have taken any excedrin and I have realized that my migraines have intensified. which is also why I don't feel the Nortriptyline is working at all.
I actually called my Neuro after I made this post. We decided I would reduce my dosage of Nortriptyline and go back on the Gabapentin, until I can see her next. Her office is 3 hours away from me. I might be switching Neuro's anyway, since I can not always make the trip to Seattle. BUT, I want to stay with her for a while. She is the only Dr, Neuro that has actually believed just how debilitating the pain is. She agreed to fill out any papers I needed for my Disability Claim.
Do any of you have experience in a disability claim pertaining to Migraines?
Again, Thank you for the advice. I am glad to be talking to others, who know what it is like.. but sad that there are so many that suffer from this disease.
Thank you,
Cassie
With all the Excedrin you were taking...wow, 2,000 mg a day. You were definitely having rebound headaches, which....for some people hurt worse than the migraine they were originally trying to treat. And even once you stop the medication, that rebound can stay with you for quite a while. To really make sure you are out of it, you should completely stop the med for a good 3-4 weeks. After that, you shouldn't take that med again anymore than 2x per week....and definitely not at that high dose. For excedrin, you shouldn't take more than 1000-1500 mg. Otherwise, you can put yourself right back into a rebound and not even realize it.
As for disability, it's hard to get for migraines. I was able to get it, but I had 10 years of records, 5 years with one doctor, and 5 years from my currant doctor. It showed that on a daily basis I could barely get my head off my pillow. My doctor worked very hard to get me on disability. I'm so grateful for him.
Definitely talk to your doctor about starting the process for disability. It can be a long process, so just be prepared.
Just a question.....when you say you are allergic to sumatriptan, do you mean you are allergic to the pill or the shot? I can't take the shot because I had a very bad reaction to it, but I am able to take any of the triptan pills.
My doctor and Attorney both said that Botox would be my best option.. because Disability see that as a last resort to trying medications. I don't know how true that is... but maybe it's worth it, to raise my chances to get disability. I know that sounds shady, that I just want to be a free loader.. but that's not the case. I relate when you say you can barely lift you head off the pillow. I have a headache right now, I can feel it is turning into a Migraine. I am surprised I am even on this right now.
My primary Doctor doesn't want to help me with disability. She thinks 'I am too young to be Labeled as Disabled'. I don't feel that way. I have suffered since I was 8 years old from Headaches/Migraines... So, 16 years. That is a long time to suffer from something so intense that your doctor thinks 'Eventually we will find a solution'. Well like I said, 16 years later and that hasn't happened. My Neurologist Agrees that I should be on Disability. So does my Chiropractor. Even though he isn't a MD, the SSA is taking in consideration that he has X-rays of my spine/neck from two years ago to now. As well as Muscle and Nerve scans. I was in a accident a few months after I began seeing him. He is still treating me for that.
To be honest, some times I feel like throwing in the towel. The pain I endure as you all know, is dreadful. I want the pain to stop so bad, I'd do anything.
Ugh, I have a lot more to say and a few other questions.. But my head hurts so much now.. I am gonna go lay down with a ice pack on my neck. :/
So your spine really has little to do with having migraines that started when you were 8. And being in a accident has little to do with migraines that started when you were 8. Disability will look for reasons to deny your case. So many people in the chronic pain group on this site are sooo sooo disabled, and they are denied all the time. When I broke my back when I was 25, and I was paralyzed, I was told to look into disability. I called disability and asked the lady on the phone if a broken was a legitimate claim, and she flat out said: NO. They really give you little hope.
My best advice is: get your doctor (neurologist) to put everything they can to make the case for you. The doctor's notes are so very important. And it's true...you might just have to do botox to help your case. Also, listen to your attorney. They may want to put all your past info into your claim, and it may help you. I just know, it worked against me. But I'm just one person. But your doctor and your attorney are going to be your biggest advocates. So listen to them.
Just something I want to mention about botox. It just might really help you. And wouldn't that be great. The only thing is, it may take a while for the effects to really kick in. You may not know until you've done 3 courses of it. So if you do do it, be patient.
I'll send it in.