You mentioned you had to drive 4 hours to see a doctor that treated you with respect and understood what you were going through. I absolutely relate to this, matter of fact, I actually have to fly to see Dr. Robbins every 3 months to receive treatment. One of the reasons I began looking in other states is because of the lack of education among physicians in my state in regard to migraines, and the other is because every neurologist and headache specialist insisted on me taking Topamax. I like how say it made you, “sharp tongued and ugly natured” because that is a much nicer way to state it then what my wife said to me, which I am pretty sure Dr. Robbins wouldn’t want me posting on the board. Frankly, I was downright mean, and irritable on Topamax, and my wife said to me one day (among other things) that, “she could hear my feet hit the floor in the morning as soon as I got out of bed.” Now, she is my wife, which usually makes her opinion correct by default , but she is also a very good doctor, and thus I think in regards to medication, her opinion has a great deal of merit. So as I spoke to the “headache specialists” in my area, of which there is 1 clinic in the entire state, they immediately starting talking about the benefits of Topamax, to which I would respond by explaining that it didn’t have any effect on my migraines, but it did make me meaner than a rabid-badger. Their suggestions varied from lowering the dosages, to increasing the dosages, to combining Topamax with a variety of other drugs, etc.

Now, I may not be the brightest berry on the bush, but I would think that if I am noticing the side effect of irritability and anger, my wife (who is a doctor) is also noticing the exact same behavior, than there must be some value to that argument. I also think that a patient mentioning “anger and irritability” from a medication to their doctor, that their ears should perk up like a deer on alert. Nope. Not once did any of the local physicians suggest I stop taking the medication, as they were convinced that it would work for me, and in reality, what they were actually doing (perhaps without realizing it) was blaming me for the lack of efficacy of the medication.

So that is how I ended up in my current circumstance of flying across the country every 3 months in order to find a knowledgeable, compassionate, and understanding physician who actually listened when I told him about the side effects of certain medications, including Topamax. It is a costly burden for my family, and not a fun commute as flying in an airplane sometimes triggers my migraines; however, it is worth every penny to me and my family because my migraines have been reduced roughly 50% of where I started.

I didn’t see you mention trying Frovatriptan (Frova), but you may want to try that and see if it works better. What has worked best for me has been a combination of supplements of magnesium, vitamin D, Petadolex, complex B vitamin, Toprol XL, and occasionally some Feverfew. It didn’t help immediately, and it took several weeks for me to start noticing a difference, but I think you need to take them all in combination and give them some time to work, which you may have already tried. I also receive Botox injections every 90 days in the head, face, and back of the neck, which has helped in reducing the frequency of migraines. Botox has not been a miracle worker, but it does help reduce the frequency of my migraines, and so I’ll take whatever I can get at this point.

Talk with your doctor, but you may be someone that needs to take a small daily dose of a long-acting opiate in order to control the migraines. There are some patients that respond well to this treatment, but it should be a last resort, when nothing else is working. Some patients also respond well to stimulants like Adderall or Ritalin to prevent the headaches. If you have never been evaluated for ADD/ADHD, perhaps this is something you should have done. Even if you don’t suffer from ADD/ADHD (from my understanding most adults lose the “hyperactive” as time passes) you might still benefit from the stimulants as a preventative or perhaps even acute therapy.

Let me know how your appointment goes today and how your treatment is progressing. I will be thinking about you and wishing you the very best in treatment and in life.

Sincerely,

Jeff Poleet
Chronic Migraine Patient

DISCLAIMER: I am not a healthcare provider, and I do not provide any medical advice, diagnosis or treatment. The information presented here is designed for general informational purposes and discussion only, and is not intended to replace a physician’s judgment about the appropriateness or risks of a procedure, medication, product or diagnosis. Always consult your doctor about any medical questions or conditions you may have.

I’ve tried Amerge (years ago) and Maxalt. I’ve taken; amiltryptiline, inderal, Topamax twice (the neuro told me he had me at too high a dosage the first time), but it made me sharp tongued and ugly natured – with no noticeable reduction in migraine, verapamil, zonisamide, Petadolex, magnesium, all the B vitamins, Vitamin D. I have not taken combinations of drugs.

I have an appointment today with a neurosurgeon. I’m going to ask for a contrast MRI of my neck and head to rule out problems there.

Last year – in desperation – I went to a chiropractor for the first time, and was told that my cervical spine had straightened out, losing the natural curve (due to a career at a desk job). I don’t know if that is hooey, but after straining my back a couple of months ago, x rays showed that one of my lumbar discs is about gone. I figured if that could happen to my back, it could happen in my neck, too. Oh, by the way, two months of 3 x week trips to the chiropractor were worthless. I stopped going and they kept calling me to back for further “treatment” – like a used car salesman – until I demanded that they quit calling me.

I broke my nose as a child and had surgery when I was six years old, and again when I was 28 and two sinus “roto rooters” by two different doctors to cure my headaches, prior to migraine diagnosis. I have an appointment next month to evaluate how fouled up my sinuses are from these surgeries. See Wikipedia Migraine Surgery.

If these efforts don’t provide relief, I’ll pursue a medication cocktail.

I look forward to your next post here. Thanks for sharing your story. may God bless you and grant you remission from this painful disease.

I took the medication, and as a good doctor would, he had me wait 30 minutes or so before I was going to be discharged, to make sure I did not have any adverse effects. My mother and I got half-way home when I started to feel my chest pounding, sweat was pouring down my face, and we had to pull over at least once so that I could vomit due to nausea. My mother, going into panic mode, swung a U-turn and we headed back to the ER as fast as she could drive. I was immediately triaged and taken back to a room, and the next thing I know, my mother was pushed out of the way as the room filled with people in white coats and scrubs. I have always been fascinated with words (hence a degree in English Literature), and on that day I learned a word I would become all to familiar with: Tachycardia (basically an abnormally fast heart rate that means the heart is working much harder than it should while at rest). It can be dangerous depending on how fast the heart is beating and the rhythm associated with it.

Now, I can’t remember how fast my heart was beating on that night, but I knew it didn’t feel normal, and as a curious child I remembered the word, and because I knew what a heart attack was (grandpa had already had 2) I KNEW that was what I was having (which I wasn’t.) The rushing around of doctors and nurses only served to give me further evidence that I was in trouble, but as it turned out, not nearly as much as my mind had made it out to be. I was hooked up to what I would later learn was an electrocardiogram (ECG), which allowed the doctors to view what type of heart rhythm I was having. I don’t recall what medication I was given, but I was immediately hooked up to an IV and drugs were being shoved into my body faster than my uncle Lloyd can eat a barbeque rib. Slowly but surely, my heart rate began to slow down and several hours later (maybe the next morning) I was discharged again. I have been terrified of triptans ever since that day, and I remember it so vividly I can tell you the color scrubs the nurses were wearing. (Green)

This lead to me trying other medications as time droned on (at that time there were no other triptans to my knowledge), that had little effect and I began to feel somewhat like an object commonly referred to by chemists as a “beaker.” Eventually, as the migraines were affecting school attendance, sports, and life in general, I went to one doctor who prescribed me a drug called Darvocet. At the time, I had no idea what an opioid was, but that is what Darvocet was. The doctors had been reluctant to give the medication to a young boy, but after looking at my charts and seeing the list of medications and ER visits, this is what I ended up taking when I had a migraine attack. To this day, out of every medication I have tried, including stronger opioids, this was the best medication I have ever taken for the acute treatment of a migraine. Unfortunately, Darvocet was taken off of the market in the USA in 2010 because of adverse effects, mainly little things like heart attacks and cardiac disease. You know doctors, the medication kills a few thousand people and all of a sudden it is a bad drug. The Universe loves me.

So, after decades of using this medication, I now had to find something else to work, which I have still yet to find anything that treats the pain more effectively and allows me to function like I wasn’t losing IQ points by the minute. As I got older, the more I noticed the demeanor of doctors changing when talking about opioids for “headaches.” I guess nobody expects a 13 year-old of trying to scam the system for narcotics, as much as they do when you turn 18. I can relate so much to your use of the term “arrogant” and “smug” doctors when relating my headache pain, which I am working on a blog post now. I hope you will read it and share your experience as well. So over the years, I have tried every triptan invented, even though they scare me more than any other drug to this day. I eventually landed on one called Amerge, which has proven to be somewhat effective in reducing the pain, depending on how soon I take the medication, and how bad the pain has already progressed.

I find that if I wake up with a full blown migraine, the triptans do very little, if anything, to help. Amerge is what Dr. Robbins refers to as, “the kinder gentler triptan”, and it is apparently tolerated by some patients due to it being a little less dramatic in its effects. I do use the Amerge as my first “abortive” medication, but I always have a blood pressure cuff and phone beside me when I take it, and sometimes it too will cause me to have tachycardia. That is how bad my migraines hurt, that I am willing to chance a heart attack to avoid the pain. I have never had anything in my life compare to the pain of a migraine. I understand what you mean by “malaise”, but I wonder if this is due to the medication itself or just the fact that you are recovering from the migraine? I know it can take me a couple days to get over the trauma of a migraine.

Here is my non-medical, unauthoritative, non-expert, simpleton opinion. If you haven’t tried preventatives to decrease the frequency of the migraines, I absolutely think you should. Perhaps you can also try another triptan and see if it has better efficacy than the Imitrex. I believe there are 8 triptans total now, so you can try a wide variety, and my understanding is that Frovatriptan (Frova) is one that is particularly effective for women. As a matter of fact, the American Academy of Neurology (AAN) just issued new guidelines on preventative medications for migraines, and listed them according to “proven to be helpful” and “probably helpful.” Drugs that were “proven” to be helpful were given a “Level A” rating. Among the A rating drugs “proven” to be helpful, one triptan made the list, and it was Frovatriptan (Frova). The other medications that received a rating of A were the following: [1]

Divalproex sodium (Depakote)
Sodium valproate (Depacon)
Toprimate (Topamax)
Metoprolol (Lopressor, Toprol-XL)
Propranolol (Inderal)
Timolol (Blocadren, but no longer sold under that name in the U.S.) [1]

Personally, I have not had any luck with the anticonvulsants reducing the frequency of migraine attacks, and I can’t take the side effects either. Some patients, including myself, refer to Topamax colloquially as Dopamax. Matter of fact, do a search for the term Dopamax (a completely made up word by patients on the medication) on Google and you will see over 14000 results. However, this drug has received an A Level rating as proven effective from the (AAN), and it is widely reported as helpful in a great deal of patients in reducing the frequency of attacks. I know of migraine patients that swear by it, and you couldn’t take it away from their medicine cabinet with a SWAT team.

Next, I would try an herbal supplement (I know, I know, don’t give me that look) called Butterbur that is a preventative as well. One of the better known and recommended forms of this herb is a patented drug call Petadolex. I take this medicine and I do believe that it has helped reducing the migraine attacks. I would recommend Petadolex as they have a patented process from removing all of the unnecessary ingredients from the Butterbur, leaving only the good stuff to prevent migraines. I order my Petadolex online and I am signed up for monthly delivery. I order from here: http://www.petadolex.com/

I would also try a beta-blocker such as Metoprolol (Lopressor, Toprol-XL) or Propranolol (Inderal). Both of these medications received an A Level rating by the (AAN) as well. [1] You might also need to have your vitamin D levels checked, as many people, not just migraine patients, have a low level of vitamin D, which can cause all sorts of problems, including headaches.

Other over the counter medications that were rated as “probable efficacy” in the prevention of migraines were: magnesium, riboflavin, histamine SC, and the herbal supplement feverfew. [2] Feverfew can have the same effect as aspirin in that it may increase the risk of bleeding. Feverfew has been used for centuries in Europe, and many people find relief from acute pain from migraine, and well as a reduction in frequency of attacks.

Some antidepressants can work as a preventative as well, and may help with the depression and anxiety often associated with migraine patients. If you are not taking any of the above medications or no preventatives at all, it certainly sounds like you could benefit from them. *Remember, taking triptans or any medication for that matter too frequently can actually cause you to have more headaches, so be careful how often you are taking medication, as you can make them worse by trying to treat them.

Other things I would suggest are getting some exercise, slow, moderate, exercise (e.g. walking, walking the dog, Pilates, Yoga, and massage.) I actually have a prescription for a massage a week (Thank you Dr. Robbins) and these work wonders for relaxation and releasing tension in muscles. Try peppermint oil on the temples and forehead as this can give that tingling feeling that can sometimes help reduce pain and the smell of peppermint can help with the nausea. I also rub this on my pillow when I have a migraine so I can smell the peppermint, as my sense of smell gets so strong during an attack that I can smell my dogs like they are in my lap. I also like the product CryoDerm, which is a topical roll-on ointment that has a lot of menthol as the ingredient. I rub this on my neck, temples, and forehead when I feel tension or a headache starting to occur and it can help ease tension and sometimes keep the headache from progressing as quickly.

As you probably are aware, you are going to have to try combinations of these medications, play with the dosages, and give them time to work. Don’t expect to see any change until at least a month or so of taking them as your doctor orders. Basically, we have to take a shotgun approach to treating migraines, as there is just nothing in existence that stops the migraine in its tracks. Even when I have to go to the ER for strong opiate pain medication when everything else has failed, it doesn’t stop all the pain, but it does allow me to go to sleep, and allows my brain to “reboot” as I call it.

Talk to your doctor about adding preventatives to your treatment plan to decrease the frequency of attacks. I am not a doctor, so I am just giving you a general opinion on what has worked for me. After 30 years of chronic migraines, I have tried just about every medicine and herb in existence to get the migraines under control and gain back some quality of life. Be patient, and give yourself a break. If something doesn’t work on the list above, there are other steps you can take as well.

Please let me know if any of these remedies have helped you or did help you if you haven’t tried them yet. I wish I could take a shot of Imitrex, but my body will not tolerate the side effects, so in some ways, you are better off than a lot of folks like myself that find the triptans not very effective or the side effects make you think you are going to have a stroke.

As always talk to your doctor about these medications and herbs and get their educated opinion on what they think you should try or what could be contraindicated for you based on current medications you are taking. Remember, I am just a migraine patient, just like you, and all I am sharing is my opinion based on my personal experience. You should always talk to your doctor before beginning any exercise, medication, or herbal supplement program.

Please keep me informed of your progress, and I will keep you in my thoughts. We will figure out something that helps, by hook or by crook.

Thank you again for sharing your comments, and I hope my blathering is of some use to you or others reading. Take care of yourself, give yourself a break, remember you are not alone, and as always, “Keep Calm and Carry On.”

Wishing you the best in life and your treatment,

Jeff Poleet
Chronic Migraine Patient

References:

1. Silberstein S, et al “Evidence-based guideline update — pharmacologic treatment for episodic migraine prevention in adults: Report of the Quality Standards Subcommittee of the American Academy of Neurology and the American Headache Society” Neurology 2012; 78: 1337-45.

2. Holland S, et al “Evidence-based guideline update — NSAIDs and other complementary treatments for episodic migraine prevention in adults: Report of the Quality Standards Subcommittee of the American Academy of Neurology and the American Headache Society” Neurology 2012; 78:1346-53.

Additonal Sources and article review: By John Gever, Senior Editor, MedPage Today
Published: April 23, 2012; Reviewed by Zalman S. Agus, MD; Emeritus Professor, Perelman School of Medicine at the University of Pennsylvania. Full Article may be read at: http://www.medpagetoday.com/MeetingCoverage/AANMeeting/32304?utm_source=share&utm_medium=mobile&utm_campaign=medpage%2Biphone%20app

DISCLAIMER: I am not a healthcare provider, and I do not provide any medical advice, diagnosis or treatment. The information presented here is designed for general informational purposes and discussion only, and is not intended to replace a physician’s judgment about the appropriateness or risks of a procedure, medication, product or diagnosis. Always consult your doctor about any medical questions or conditions you may have.

I’m tried many preventives, Botox twice and had a PFO closure last year. I’m tracking down a couple of leads right now, which I can only pray will provide relief.

I am physically getting weaker and less able to be productive. Going outside during seasons with long, sunny days formerly was a joy and now i avoid it like a vampire.

I research the Internet constantly hoping for a break through cure. I have learned that there are many migraine sufferers, with more or less pain.

I drive four hours for my neurologist appointments because of the overall arrogant, smug attitude of local neurologists.

This website is the best source of useful migraine information I have yet discovered.

Strictly speaking, Great Britain didn’t lose WW II – yet it effectively destroyed her and she never regained her former glory. Technically, though my heart may continue to beat, this disease will destroy me. Nevertheless, it is better to Keep Calm and Carry On because the alternative is degrading.

Jeff, thanks for your supportive words. I hope you will continue to report further improvement in your migraine treatment.

But when I was under 10 years old, and taking no medications, why didn’t the migraines get better? According to Transformed Migraine theory they should have been much easier to deal with, but they weren’t. Some days I feel like I am going in circles, even though Dr. Robbins has reduced my migraine frequency to a degree I never expected.

It is rough, very rough, and some days we are just going to have to accept that it sucks, and try our best not to hit people with heavy objects Thank you very much for commenting, and I am so happy that you found some use in my experience. Feel free to write on here as often as you like, and I will always read, and reply if I have anything useful to say, which I will have to ask my wife about first.

Hang in there, and whenever you need a place to vent or talk, I am right here.

Sincerely,

Jeff Poleet
Chronic Migraine Patient

“Individuals with one disorder are at least twice as likely to have the other” 1-5

I have never experienced a high degree of hallucinations during the aura phase, but I have felt at times like one side of my head was larger than the other, one leg longer than the other, and walking down the hallway in my house during a migraine attack can seem like the hallway stretches along for miles. Cold water can seem very hot, and vice versa.

I remember thinking of this song lyric years later, as I reflected on how long I have suffered from migraines. When I was younger, and how my mother used to crush up Tylenol with spoons and mix the powder in juice or soda. I was too young to be able to swallow pills, so this was her way of giving me the medication, which simply didn’t have any effect on the pain.

“One pill makes you larger
And one pill makes you small
And the ones that mother gives you
Don’t do anything at all” -White Rabbit, Jefferson Airplane

Thanks for the information Dr. Robbins and the walk down memory lane.

1. Andermann F. Clinical Features of Migraine-Epilepsy Syndrome. In F Andermann, E Lugaresi (eds), Migraine and Epilepsy. Boston: Butterworths, 1987;3–30.

2. Andermann E, Andermann FA. Migraine-Epilepsy Relationships: Epidemiological and Genetic Aspects. In FA Andermann, E Lugaresi (eds), Migraine and Epilepsy. Boston: Butterworths, 1987;281–291.

3. Andermann F. Migraine and Epilepsy: an Overview. In F Andermann, E Lugaresi (eds), Migraine and Epilepsy. Boston: Butterworths, 1987;405–421.

4. Marks DA, Ehrenberg BL. Migraine related seizures in adults with epilepsy, with EEG correlation. Neurology 1993;43:2476–2483.

5. Lipton RB, Ottman R, Ehrenberg BL, Hauser WA. Comorbidity of migraine: the connection between migraine and epilepsy. Neurology 1994;44:28–32.

DISCLAIMER: I am not a healthcare provider, and I do not provide any medical advice, diagnosis or treatment. The information presented here is designed for general informational purposes and discussion only, and is not intended to replace a physician’s judgment about the appropriateness or risks of a procedure, medication, product or diagnosis. Always consult your doctor about any medical questions or conditions you may have.

This is excellent news, as the opportunity to detect depression early in the teen years may help patients seek treatment earlier, reduce suicide rates, help determine what medications would have the most efficacy for the patient, and eliminate the need for expensive scans of the brain and genetic analysis. It was also interesting that the authors of the study believe this technique will be capable, in the future, to determine different types of depression (e.g. bipolar, Dysthymia, and other psychiatric disorders.)

Although the study was limited in the number of patients, it does appear they have high confidence in developing an assay that will be able to determine with a high degree of accuracy the presence of depression. I can imagine a time when these tests could be done in the course of a routine blood workup for infants, adolescents visiting their family doctor, and people being evaluated for other medical conditions.

Jeff Poleet
Migraine Patient

DISCLAIMER: I am not a healthcare provider, and I do not provide any medical advice, diagnosis or treatment. The information presented here is designed for general informational purposes and discussion only, and is not intended to replace a physician’s judgment about the appropriateness or risks of a procedure, medication, product or diagnosis. Always consult your doctor about any medical questions or conditions you may have.

Source: April 17, 2012|By Melissa Healy, Los Angeles Times; study leader Eva Redei, a professor of psychiatry and behavioral sciences at Northwestern University’s Feinberg School of Medicine in Chicago

Just wondering what method they are using to determine the depression. Are they testing for blood biomarkers? Do they have a specific assay for depression like they use to detect diabetes or cardiac disease? Are there genetic markers, etc?

This would be a tremendous leap forward in the detection and depression. If only they could find a way to do this for migraine patients, so we could be given a card or ID to show the ER doctors and others who might have doubts about the veracity of a patient’s illness.

Appreciate any additional information about the study you may be able to provide. As always, thank you for providing this information and keeping us up to date on new discoveries and treatments.

Jeff Poleet
Migraine Patient