Headache Story - Page 1

Dr. Scott


 → My Story - Dr. Scott

I have been diagnosed as having chronic daily intractable migraines. I've struggled to keep working for 11 years, but they kept getting more intense. No medications have helped, and my doctors have tried every known medication that is not contraindicated. I finally had to stop working this month, after 30 years of supporting my wife and me. It's bad enough that the migraines kept us from having a normal life. I can't concentrate on much of anything, my memory is impaired, I rarely can go outside in the sunlight or ride in the car (I stopped driving years ago), nor do I eat when I'm dizzy and nauseous, or I can’t be around certain food smells, or even carry on a conversation and speak at times. My wife has been very patient with me, even though she hates having to tip-toe around the house while I have a headache, or keep the house dark, or forego going out and having fun. Now I don't even have an income, and my future is uncertain.

I've applied for Social Security disability benefits, but the woman at the Social Security office looked at me and said, "They’re not going to approve this." Apparently, even disabling daily migraines aren't a sufficient "excuse" for not working! Why do they think that a migraine is just a headache? Why would anybody even think that after 13 years of post-graduate work to train for my career, and a good income as a doctor that I would want to sit at home on a low income? Why do they think that I can care for patients when I can't even function most days?

Even, if by some miracle, I can get disability benefits from my insurance company, they would only last for two years! Two years! I don't know how we'll survive after that, and if we are turned down by both the insurance company and Social Security, I don't know what we'll do.

The government must be educated about migraines, and insurance companies must be forced to cover migraines as the neurological disorder they are, and not just a "mild inconvenience".


 → My Story - Chris

I've suffered from severe Migraine headaches for well over 10 years. I have been to six different Neurologists and each one of them gave me different prevention pills to try and keep the headaches away, including Topamax, Effexor, and Verapamil, but nothing worked and I was tired of putting all that medication in my body. One day at work I was talking to a co-worker who had suffered for a long time from Migraines as well, and had come across an *all-natural juice. She had tried it, and after just a few short months was completely headache free. I was pretty hesitant at first myself, but at this point, I had suffered for so long, that I figured I had nothing to lose. This juice comes from a desert cactus in Arizona and Mexico. I started to feel a lot better after just a few days and after a month on the juice, I felt like a totally new person! It turns out that it has many more great health benefits, too! It also helps with inflammation, reduces swelling in joints and muscles, helps with allergies, reduces stress, gives you more energy, and more. Just wanted to let people know there is an all-natural alternative out there and that there is hope for us. Good luck to everyone.

*The NHF does not promote products.


  → My Story - Karen

I have been suffering with headaches, migraines, for about 20-years or more. I remember them lasting for a month or more, just ebbing in my head.

For the last couple of years I have noticed that my headaches are getting more frequent and painful. I have also realized that when I yawn frequently or sometimes feel like I want to yawn but the yawn won’t come; my headache tends to come on. This is like my trigger, or the warning that I am about to be in some serious pain. Also, I have an upset stomach, nausea, vomiting, throbbing pain; my tongue and the back of my throat become tingly and numb sometimes, even to the point of having slight difficulty speaking. This is the part that really bothers me more…the part where my tongue feels weird. Pills do not help. I have to have a bag of ice on my head where the pain is and lay down.

Has anyone heard of the tongue issue?


 → My story - Rachel A.

I started having vascular headaches after a car accident in 1999. At first, they started out as infrequent, mild annoyances with extra sensitivity to sunlight. But as I grew older, they began to impede on my life.

Some months I will not have a migraine at all. But others times, like now, I have them for three to seven days straight with little relief. They are always over my right eye and I have sensitivity to light. To survive I have to be in a completely blackened room or put the pillow over my head.

When I have migraines, I cannot be with family members. I get cranky and depressed and have to isolate myself in my room. When I worked in retail, I could not even begin to meet customers as the bright light would be torture to me.

Fortunately, now they can be controlled with the blood control medicine my doctor prescribes me (I do not have blood pressure). However, I still would have "seasons" of migraines throughout the year.


 → My story - Kim

I started having some headaches while growing up. I had them through college and during my working career. During this time they were occasional. However, the last five years have been horrible. I’ve had a headache most days of the week (pain and nausea). I have been working with a headache specialist in San Francisco, but so far nothing has helped.

I had an MRI and everything was normal. Nothing seems to work for me. Right now I am on Nimodipine and it isn’t helping. I live on Dilaudid for the pain. I ran out of Dilaudid about three weeks and can’t get in to see my Doctor be fore my appointment in September.

My migraines are ruining my life. What can I do?


→ My story - Carol F.

I had my first migraine at age seventeen. I suffered with the pain, nausea, and sensitivity to light. Over the next 20 years, I went from doctor to doctor looking for relief. I was put on Inderal as a preventative, which worked for a few years. Soon enough, though, it stopped being effective. I was given Midrin for the headaches, which, again, worked for a few years before it stopped working also. Eventually, I was referred to the Headache Clinic in Chicago. I became a patient of one of the physicians there. Over the next eighteen years, I was put on twenty five different preventatives. Initially, I was tried on Nardil, which is a Monoamine Oxidase Inhibitors (MAOI) drug. It worked wonders. I felt like a new person. For two years, I was almost headache free. Eventually, though, it stopped being effective, too. Finally, two years ago I was put on Marplan, which is another MAOI. So far it is working. I feel really good right now. And I still see the Chicago physician.

Recently, I contacted the NHF to start a Headache Education and Support group (HES/g), here in Huntsville, AL. With their help, we are going forward with this new group and our first meeting will be in September 2010. I hope to share my story and my knowledge of headache treatments with fellow headache sufferers.


 → My Story - Charlene

 I started having migraines in my mid-twenties when I became pregnant for the first time. I suffered with the migraines, nausea and vomiting for years before seeking help. I think I have tried everything known to mankind, including maintenance medicines, medications for depression, various injections, and herbal remedies...I’ve tried them all. Imitrex helped the most until my body got used to it, and then it stopped working. I now take Frova but I need two doses to ward off a migraine. Unfortunately, they usually return the next day. My migraines last between two and four days. And I usually get one a month, but it is not uncommon to get two in a month. My lost time from work is a little embarrassing especially when there are people who have never experienced the pain of a migraine and cannot understand why you need to take time off of work for a “headache.” My most extreme migraines, as I stated earlier, include nausea and vomiting, and I can lose up to five pounds in that time. Now I see that two out my three kids are showing signs of migraines; they are both girls, if that means anything. I am not opposed to trying anything new, if they say that Botox works, then let's bring it to the states!

 → My Story - Twyla

I am a migraine sufferer and have been for many years. In 1987, a young man, who had been coming to our hospital’s Emergency Room for seven years with headaches, went to the Cleveland Clinic, and was diagnosed with brain cancer. He died soon after.

My gynecologist, who knew I had been having migraines, referred me to the Cleveland. Clinic, where they did many tests on me, including a CT scan. I had the whole headache thing: nausea, vomiting, horrible one-sided headache, and inability to function. I was diagnosed by the doctor with Common Migraine headache. Then the nurse showed me a video and gave me important information and literature to help me. I was put on a beta-blocker to help keep the migraines from being so severe and so often. When I got home to West Virginia, I researched headaches, contacted the National Headache Foundation and became a member. I began teaching Headache Seminars in my community with the help of literature from the NHF and Susan Barron. I am a retired R.N., but continue to try to help other migraine sufferers. By the way, once I learned about auras or signs of migraine, I realized that the holes in my vision before my headache hit meant that I have 'classic' migraines. Sadly, migraines are genetic and can be inherited by our children and grandchildren. Some of the doctors at our hospital actually referred their migraine patients to me for teaching, using my research and the NHF's newsletter and informative literature brochures.


 → My Story - Janice

I have suffered Basilar Artery Migraines which I was diagnosed with, but after reading articles from The National Headache Foundation I believe that I should be diagnosed with Hemiplegic migraine. Although I still do not totally fall into this category.

I started suffering with this type of migraines from the age of 13, where I started my periods, and after suffering epileptic seizures since I was 2 years old. My grandfather and father had them and then I developed them----but they were of a more intense version. A couple of days before I get a seizure, I start to experience chest pain, on and off until the attack starts.

I’ve also been told that I suffer strokes; it is like I'm having a heart attack! I have been for scans and tests for heart problems and nothing shows up so I only connect this side effect to the migraine attacks, as they start a couple of days before I have a headache. Unfortunately, they are always different; sometimes I don't get any warnings, or my speech is affected. I can't explain how I sound when I try to speak, except, that everything is jumbled and certainly not what I think I've said, so no one understands what I have said, and I get upset. Following that I develop unbelievable pain in my head. Sometimes only on one side and sometimes right across my entire head, and the pain in my eyes is incredible. I even begin to lose my eye sight, and that starts like a fuzzy, coloured blur in the middle of my eyes, and it covers both of my eyes completely. At that stage I can't see.

I have total numbness on one or on both sides and I get a feeling of “pins and needles,” and then total numbness goes down both arms, legs and in through torso. At that point I have to lie down.

I am confused, I quite sick (nausea), and I lose all bodily functions. The pain is so totally hard to believe that sometimes I wish I would die. I could easily chop my head off to stop the pain, because I can't lay, I can't sit or move. It is like living hell. This severe attack can last for days, and after the headache has eased, I am disorientated, and I slowly get feeling back in my body, although I can't even write anything days later, again, because words come out completely jumbled. I am clumsy and have no direction in my movements; my grip is lessened and I have accidents.

I have suffered these headaches for most of my life and I am now 40 years old and still haven’t the right drugs as the doctors don't totally understand what happens when I suffer these attacks, and there is no drug I have tried or tested that actually works, so I just continue to suffer with the pain and again, sometimes wish I could end it. Nothing stops or eases my pain and I wish there was a solution to my problem. People who suffer with this type of migraine should be tested and ultimately diagnosed quickly when possible, but I have had consultants since I was 2-years-old and still don’t have any real help or anything to manage these better. I know that this affects my family life, I have 3 children, my eldest son is disabled, and I sometimes wonder if the various medications I’ve had to take all of the life are the cause for my child’s disabilities. When I had my third child I suffered a full blown stroke, which left me with numbness and affected speech for nearly six weeks after the birth. These migraines are not a joke and I wish that they could be dealt with more thoroughly.


→ My Story - Alison

Telling the story of my Traumatic Brain Injury (TBI) caused migraines is like telling the story of a tsunami!
At one time they were predictable but not now, and sometimes nausea even accompanies them. The headaches, which began as the result of an injury in February 1995, come like natural phenomena or weather patterns that sap my energy and leave me so weak that sometimes understandable and clear thought is a bit tricky. I have been prescribed medications and I take over the counter sometimes, too. After all this drama with the complicated headaches and different stages of pain, I feel just plain sick, and then guilty for being sick! (I've always felt guilty after sickness-it's something psychological with me). I usually have a week or two until I'm sick again (with a headache) and where I just live my life as usual. Other people have been mostly respectful when I need time alone.

→ My Story - Wayne

I’m 75 year old disabled Veteran and I started having headaches in 1957 while in my early 20’s. They tended to come in "clusters of migraine." Sometimes I had enough of a warning to head them off. In my case, the warnings came in the form of a throbbing in my temple or a sort of “tunnel vision,” which provided me with an opportunity to take medication to ease the oncoming headache.

About five years ago, after having a migraine every day of my life since 1957, I was at the VA being treated for shingles. The doctor prescribed 100 mg of Neurontin (Gabapentin) for me, and not only did it improve my shingles, but it also decreased the headaches! When it occurred to me that this medication was helping, on a return trip to the VA, the doctor offered to continue to use Neurontin, but to increase the dose gradually and over time. Currently I am on 900 mg, and I have the best outcome anyone could hope for…no more headaches!

After going through the standard trial and error of medications for years, such as Cafergot (Ergotamine), Tylenol, and so on, I had another interesting experience because of my struggles with headaches, and that was when I had extensive dental work to have the amalgam fillings replaced with other material. Although these teeth are now capped, and the severity of the headaches decreased could this have played a part or been another reason for less severe headaches?

Hard to say, but as of this date I am no longer suffering from them.


  → My Story - Carol

I began having migraines when I was 3-years-old. At first my mother tried to treat my pain with what was available in 1964, and that was limited to over-the-counter. Eventually she took me to a pediatrician who recommended a visit to the Washington State University Medical Center. They ran every known test they could with no answers except that I was evidently having migraine headache. This didn't seem unusual to my mother since they ran heavily throughout my family, including my mother.

After several unsuccessful trips to the Emergency Room (ER) in the '60’s where they did not give pain medication to children, my mother started researching hypnosis. At that time, little was available on hypnosis, so she investigated how it worked. After several visits to learn hypnosis, and having some success with her own migraine condition, she began using some of the techniques with me. For many years we had great success with this method.

When I was 18 I entered the Air Force. I got pretty lucky and didn't experience a migraine for the first 2 years I was active duty. Then one night while driving home I was hit with the “migraine of all migraines.” I couldn't even make it home but I was able to make it to a friend’s. I did everything I could think of, took pills, used hot towels, but nothing helped and it got worse so that by 3:00 a.m. my then roommate drove me to the ER on base. One doctor began treating me with oxygen, which seemed to work well and quickly. When the neurologist came into the room I casually asked if chicken pox could cause such an extreme migraine; he went running from the room leaving me baffled. When the regular doctor came in and took one look at my face (of course, where the hot towels were) he diagnosed chicken pox with encephalitis, and put me in quarantine. The next day I woke up and was paralyzed from the neck down. The hospital refused to admit me because of the extreme contagiousness of the disease! This is where my friends stepped up to help me!

Following that, my migraines became quite frequent and any subsequent trips to the ER meant the usual narcotics, which only lowered the pain, but never relieved it. This went on for another 20 years until I ran into a doctor who refused to prescribe narcotics but eventually gave me Toradol (Ketorolac 60mg/2ml intramuscular injection) and told me if I came back that night she would give me the Demerol. I was so mad I was ranting to my husband on the 30-minute drive home. When all of a sudden, about 15 minutes later, I realized the pain was gone!

Eventually I saw my Primary Care doctor (PC) and insisted on a Toradol prescription for home use. After a great deal of arguing I got the prescription, although for eight vials a month, but it helped a lot until I turned 38. That’s when my headache started coming nearly every day. Finally, I suggested to my PC that we run more tests because I also suffered from chronic blood clots since age 19. The first study showed that my right jugular vein was clotted off. With that news, I got excited thinking “shunt, or maybe a balloon,” and “pouf” the migraines would go away! He immediately put the breaks on that and instead ordered a MRI/MRV/MRA, which is a type of MRI that visualizes the veins and arteries of the brain. The results where astounding, in fact they ran the test twice not believing what they saw! Each time they got the same results. The entire right side of the veins in my brain had clotted off. There was no solution at that point but to wait "collateralization." Collateralization is when a blood clot occurs in a vein and after time the body creates a new vein (or veins; some are created from capillaries, and some are newly formed veins), which did slowly come over the next 10 years. Now I am down to 4-8 migraines a month, and the Toradol takes care of them every time.

It's been a blessing not to have to go to the ER any more where the often treat you like you’re drug seeking. I hope that my story will open some doctor’s eyes about the home use of Toradol for chronic migraine sufferers. That's my story and that's my migraines and I am still breathing and kicking, so don't give up there's always an answer…eventually!

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