Any Migraineurs?

[letsgorangers]

Anyone else here get migraines?

My neurologist prescribed me Topamax (a preventative) and I have been taking it for a little while now. It seemed to be working pretty well, but I've had two migraines in the past three days. The current migraine was there upon waking and unaffected by food, drink, prescription pain killers, etc. I still have it over 10 hours later.

So, are any of you on preventatives and still getting migraines? Two in a period of three days seems like A LOT for someone taking a preventative drug.

 

[mcarnes]

If you're ever in the Portland Oregon area PM me.

 

[mattscott306]

I get migraines pretty often, but no where near as often as that. Normally they come once every few weeks, and are related to weather, or caffeine addiction. I haven't been to a doc about it, so I can't say much there. But they do suck.

 

[PlaceofDis]

i've known a few people besides myself with migraines. they've had very mixed results with the prescriptions. some of 'em work, some of 'em don't depends on the person.

i haven't bothered to go and talk to my doctor about it since i've very much learned how to deal with them on my own. took a bit, but i've pretty much figured out what helps and what doesnt. works well enough for me. although i've noticed that i get them less often now, but when i do get one, its more severe. i don't know which is worse.

 

[Leareth]

Read the monograph that came with the drug you will see that it can take up to six weeks just to get up to your dose and then up to 2 months for it to actually work.
Its suppossed to help prevent not completely eliminate migraines
for some people it just does not do anything except give side effects and in some people it can actually trigger migraine attacks. You may be one of the individuals.

I am one of the people it does not work on.

I get severe migraines that last anywhere from 8 hours to three days, sometimes I end up in the ER because my usual treament does not work or my colleagues think I am having some sort of seizure... Depending on the season I get them 2-6 times a month or 2 per week.
Longest on I ever had was 11 days, and spent three of those in the ER with them trying their best to stop it.

There is a new drug trial going on up here that looks at genetic link to migraines and specific treatment of those types of migraines > they seem to be a more severe form.

 

[jng]

Had them as a kid back in high school. They were stress related. Was on elavil (mild anti-depressant). Turns out some of the not so bad headaches were chronic tension headaches from abnormal vessels in the frontal lobe of my brain.

I haven't had any migraines or head aches since high school. Why? Well, I left high school and much of the stress behind.

As for medication, I quit it cold turkey too. Part of the logic was going abroad to Europe. Didn't want to deal with prescriptions. So I slowly weaned myself off not only the headache meds, but also allergies, etc.

 

[letsgorangers]

Learth-
First, I'm sorry to hear that your condition is so severe.
I know that the medication does take awhile to reach it's peak "effectiveness" but 2 migraines in 3 days is so frustrating. The one that began this morning finally broke after about 12.5 hours. I see that some of yours have gone to status migrainous; I've never reached that point thankfully. Anyway, I hope that someday you find the right combination to keep your migraines under control. I will see if my neurologist thinks I need a dose increase or a medication switch alltogether.

RE: A genetic link, that seems very plausible. My mother, my sister, and I all suffer from migraines. It would be interesting to see a treatment for people who seem to have inherited the disease.

jng-
I have chronic daily (tension) headaches as well as migraines. The medication has helped with the daily headaches immensely.

 

[Leareth]

Learth-
RE: A genetic link, that seems very plausible. My mother, my sister, and I all suffer from migraines. It would be interesting to see a treatment for people who seem to have inherited the disease.

jng-
I have chronic daily (tension) headaches as well as migraines. The medication has helped with the daily headaches immensely.

I am one of the research subjects for it, at this point I am willing to try many things and participate in all sorts of tests just so I don't have to limit what I do and where I go so much. My mother, my aunt and my grandmother all have had migraines and theresearch docs think they have found a mutation on a gene that causes them, they are planning on testing this for two years and if the results are indicative, go on the market with a migraine DNA test... treatment is another thing though...

I have had my migraines since I was 9 , they got pretty regular when I was 14 but I did not get diagnosed as having them until I was 18 and in second year of univerisity.

In regards to preventative migraine meds, the most success is with beta-blockers to help regulate heart rate and blood pressure. however for some the side effects are too much to deal with. I was on the for three years and while they did help alot, I could not get used to greying out when walking up the stairs too fast. nevermind the other effects...

Have you gone in for a CT scan ? just to see that you do not have structural issues?

 

[letsgorangers]

I had an MRI; it was clear. No tumors or anything of that ilk. My neuro ordered one because I was having ringing in the ears and vertigo.

Unfortunately, I am already on beta-blockers to regulate my heart rate. They seem to do nothing for my head. I was a bit shocked when I read they were used to treat migraines.

 

[Leareth]

I had an MRI; it was clear. No tumors or anything of that ilk. My neuro ordered one because I was having ringing in the ears and vertigo.

Unfortunately, I am already on beta-blockers to regulate my heart rate. They seem to do nothing for my head. I was a bit shocked when I read they were used to treat migraines.

Again they have to play around with dosages and specific drugs, Atenolol is no longer considered useful neither is propranolol , nadolol is still considered good. I am lucky that I have a very good neurologist who specializes in migraines and headaches. Google Dr. Gordon Robinson and see the stuff he has pioneered.

Oh the Botox injections work well too but $425 every three months is too much for me.

I wasnt thinking tumor and grotwth but rather "normal" structural abnormalities. Dead end blood vessels, weak arterial walls etc.

 

[spork183]

Mine have changed since childhood. I started at about 6. My dad had them, so they had a bit of background for diagnosis. My sisters both get them, and now my son (diagnosed at 3, would wake from a nap and say, "my head hurts. Mommy, why do you have spots all over you?") Have done the brain scan thing with no obvious problem. Tried multiple different long-term meds. None was really effective. A cocktail of Immitrex, Fiorinal and tylenol #3 knocks most of them down to a liveable state. I've gone off the meds cold turkey to make sure the headaches weren't rebound. Worst month of my life. People who don't get them have very little clue what it is like to live from headache to headache. I feel like Jekyl and Hyde or some odd manic depressive. Non-headache days are almost an event to celebrate.

My biggest triggers are atmospheric changes, over exposure to sun/bright lights, and allergy/sinus problems.

The doctor would like me to continue to try new remedies, but the downside is playing with side effects for a couple of months at a time to see if it works. Currently, I function, hold down a good job, and seldom miss work. My onset has evolved over the past 30+ years. I use to get migraines everytime I had a deadline or other stressful event. Now, I get the headache with the let down after completion. Makes it much easier to get things done. Duration use to be 3-4 days. Now, it is seldom more than 1. I use to throw up repeatedly. Now, seldom. At this rate, they should be pretty much gone in another 20 years or so. There is an advantage to losing elasticity in the brain's blood vessels...

My aura has evolved to a point where I just start to lose peripheral vision. when I have to turn my head to see anything not directly in front of me, it is time to hit the meds. I go through about 3-4 headaches a week, with clusters that are worse, followed by 4-5 days when I don't have to take anything.

btw-how many people with migraines here have had at least one doctor label them "drug seeking"? I had it happen once. In retrospect, he was right, but not in the way he thought. I'd have taken anything to make that headache go away...

Whoa, this thread opened the floodgates for me...

 

[Leareth]

One of my biggest issues in dealing with my migraine was the perception of people around me that it was a psychological condition and "all in my head"
because there is a strong link between seretonin, migraines and depression I can see where it would come from.

The Canadian government finally decided that migraine are a neurological disability in Jan 2005. That means with my severity and frequency of migraines I am a person with a legitimate disability. It means that I do not get fired from jobs for "skipping work", it means that profs in Uni understand why I wont make it to exams somedays and it also means that some of my medication is covered.

I really hate it though when people have a bad headache and call it a migraine. really bugs the hell out of me. Once you have a migraine you know the difference and NEVER call a headache a migraine again. My current boss did not belive me about migraine being a whole body multi stage experience until she started getting them herself. She actually apologized about doubting me.

I think every one should have at least one migraine in their life to get a perspective on the people who get them often and yet still manage to work and have a life.
Wow talk about opening the flood gates on this...

Spork183 you triggers are identical to mine , do you get the green tint with zig zag in your aura stage?

and yeah I have had doctors call me drug seeking hypochondriacs before, I actually punched one of the ER doctors once. She kept asking, that am I sure its a migraine? and would not prescribe the IV meds ( Ok yes one of the is morphine but...). I lost it when she refused to look at my chart, at my history or listen to the bloody nurses who know my name cause I am there so bloody frequently...

 

[spork183]

Spork183 you triggers are identical to mine , do you get the green tint with zig zag in your aura stage?

use to get some great ones with flashing specks of lights, stars, etc. Now, I'll get spots and the tunnel vision, no green tint. I feel cheated...

and yeah I have had doctors call me drug seeking hypochondriacs before, I actually punched one of the ER doctors once. She kept asking, that am I sure its a migraine? and would not prescribe the IV meds ( Ok yes one of the is morphine but...). I lost it when she refused to look at my chart, at my history or listen to the bloody nurses who know my name cause I am there so bloody frequently...

I deal pretty well, but go in about once every 6 months for a shot. My sister went into renal failure after a Tordal shot, so I requested something, anything other than Tordal. I was told Tordal or nothing. I took the Tordal. After 20 minutes, the nurse came in, checked on me, saw I wasn't reacting and said I could leave. The dr. put in his notes that I came in with Drug addictive/seeking behavior, and left AMA. I actually went to a review board to get it out of my records. The board said the dr., who had seen over 3000 patients in the past year, remembered me specifically and wouldn't change his notes. I was rather less than pleased. Gotta love HMO's.

 

[CorvusCamenarum]

Both my mother and brother suffer from migraines. For my brother it's been so bad that he was medically discharged from the Navy. I have no idea what he does about them - knowing him, probably drink and sleep. My mother does the Botox shots and they seem to help, but as someone else pointed out, they're pricey and not covered by insurance.

I've had a few here and there, but never as bad nor frequent as them. A few extra-strength OTC painkillers and sleep and I'm good to go.

 

[spork183]

My mother does the Botox shots and they seem to help, but as someone else pointed out, they're pricey and not covered by insurance.

actually, that is changing with some HMO's. Mine now offers it as an option if you can get through all the red tape and preliminary appointments.

 

[SkyBell]

I've had 3 or so in my 14 years, they really do suck.

Best of wishes to you Leareth and spork183! I can't imagine living with those all the time, they hurt enough on the rare ocassion I get one.

 

[solvs]

I get them all the time. Seems to be worse if I'm not sleeping and my sinus cavities are blocked. Used to get sinus infection, couldn't breath, might even make me want to throw up. Sometimes Excedrin helps a little, but it never really does it completely. My Sister gets them pretty bad too. Dunno, just kinda suffer through them.

 

[iBlue]

Yes, I get them. goddamnitalltohell. Prophylactic medication did not help much that I noticed. (tried topamax and propranalol and something else I've forgotten) Those do work for a lot of people but not all. I've discovered that mine were mostly due to caffeine intake, stress and biggest of all: hormones. Yup. So not much could be done but treat them.

For treatment I've had everything from "triptans" to stadol nasal spray (god that stuff wrecks you) to demerol and morphine. Mostly I've found results in a mediocre opiate/opiod painkiller, ibuprofen, a bit of caffeine and sitting in the shower to wait it out the most helpful.
Sometimes though nothing helps and you just have to go through it, unfortunately. You absolutely have my sympathies.

 

[Leareth]

Hmm there are not many effective treatments out there for migraines.

I have tried all of the drugs that are commonly used to treat them.
Do not try Cafergot... I still have nightmares about the toilet talking to me, asking if I am a friend why do I have to puke on him...

For me I found a combination that seems to work : IV Maxeran + Morphine + anti-imflammitory - have to go to ER to get but works 9 times out of 10 and in under 2 hours. If its not a bad one I take one of the tripan rapid melts and a shot of morphine... < its like being kicked by a horse...

Then I get to deal with the migraine hangover. which in itself an unpleasant experience.

 

[jwp1964]

I probably average one per month and they usually last 6-9 hours. I have found that the best remedy is an absolutely dark, quiet, cool room lying flat on my back and listening to a little classical music at a very low level.

I had a CAT Scan/MRI bcause I also had some nausea and vertigo, but that seems to have gone away and now it is just the pain and light sensitivity.

 

[PlaceofDis]

Non-headache days are almost an event to celebrate.

My biggest triggers are atmospheric changes, over exposure to sun/bright lights, and allergy/sinus problems.

i agree on the non-headache days. and similar triggers for me. +/- 5º in temps can start one.

One of my biggest issues in dealing with my migraine was the perception of people around me that it was a psychological condition and "all in my head"
because there is a strong link between seretonin, migraines and depression I can see where it would come from.

The Canadian government finally decided that migraine are a neurological disability in Jan 2005. That means with my severity and frequency of migraines I am a person with a legitimate disability. It means that I do not get fired from jobs for "skipping work", it means that profs in Uni understand why I wont make it to exams somedays and it also means that some of my medication is covered.

I really hate it though when people have a bad headache and call it a migraine. really bugs the hell out of me. Once you have a migraine you know the difference and NEVER call a headache a migraine again. My current boss did not belive me about migraine being a whole body multi stage experience until she started getting them herself. She actually apologized about doubting me.

I think every one should have at least one migraine in their life to get a perspective on the people who get them often and yet still manage to work and have a life.
Wow talk about opening the flood gates on this...

my parents and old doctor never quite believed me about 'em. but whatever. and i understand that mine aren't as severe as others, at least not all the time, and i'm lucky to not have the vision problems that come as a result for some people, but id still never wish or think that everyone should experience it. just too bad of a thing.

Then I get to deal with the migraine hangover. which in itself an unpleasant experience.

horrible feeling. almost as bad as knowing that one is coming on. or coming back. *shudder*

I probably average one per month and they usually last 6-9 hours. I have found that the best remedy is an absolutely dark, quiet, cool room lying flat on my back and listening to a little classical music at a very low level.

i've had 'em last up to 4-5 days. and while a dark, quiet, cool room does sound like it'd help and does, it doesn't always do much for me besides make it worse, since then all my attention goes to the pain and it just swells. keeping myself distracted does wonders.

 

[iBlue]

...

I really hate it though when people have a bad headache and call it a migraine. really bugs the hell out of me. Once you have a migraine you know the difference and NEVER call a headache a migraine again. My current boss did not belive me about migraine being a whole body multi stage experience until she started getting them herself. She actually apologized about doubting me.

I think every one should have at least one migraine in their life to get a perspective on the people who get them often and yet still manage to work and have a life.
...

hear hear! I went into one about this with a complete bitch who always said that "oh I have a migraine" as she was up and walking around with her eyes wide open and talking on the phone, etc. I just snapped and wished real migraines upon her, among other choice words.

It's those sorts of idiots who make things difficult on the lot of us; especially with doctors who think you're just a drug seeking scoundrel.

I've given myself black eyes and broken blood vessels from pressing on my eyes and face because of the pain. It's the most awful helpless feeling.

 

[Jovian9]

I also suffer from migraines. My triggers are weather and food. Usually if the weather drastically changes b/t warm/cold or there's a big pressure change I'll get a migraine. It took me years to figure out which foods were my triggers. Now that I've eliminated them I don't get them nearly as often (for several years I was getting a few per week). I can go months without one and then get hit with 4 or 5 in a months time. No rhyme or reason. I get tingling in various parts of my body, halos, and blindspots in my vision. I have seen a doctor and been tested. They tried Inderal and Topamax but I didn't like taking medications daily as it made me feel bad every day (not just days I had migraines).....so I take no preventatives now. I do take Midrin (Migrazone) when I get one. 2 pills at onset then 1 every hour afterwards up to 5 pills. These are GREAT! 9 out of 10 times it will allow me to fight off the migraine and keep me from going to the doctor/hospital to get a shot. I still feel kind of bad after that much medication, but no migraine (and I'd rather feel bad than have a migraine any day).

.....
It's those sorts of idiots who make things difficult on the lot of us; especially with doctors who think you're just a drug seeking scoundrel. .....

LOL. My doctor thought that when I first started having these. He was really hesistant to prescribe anything and would just give me a shot while I was there. Then I had a BAD one and had my wife take me to him. I got sick all over the doctor's office bathroom while having the migraine and from then on he has never doubted how serious it is.

 

[spork183]

For treatment I've had everything from "triptans" to stadol nasal spray (god that stuff wrecks you) to demerol and morphine. Mostly I've found results in a mediocre opiate/opiod painkiller, ibuprofen, a bit of caffeine and sitting in the shower to wait it out the most helpful.
Sometimes though nothing helps and you just have to go through it, unfortunately. You absolutely have my sympathies.

Done the whole nasal spray thing for extended periods. Not effective. I've found that taking a low dose of otc sinus allergy meds at night can help reduce chances I'll wake with onset or a headache. For me, it has to be about 15mg of pseudophed, 2mg of chlorphenramine. If I take higher doses, it drys the nose out big time and then I get a headache, which will ultimately, surprise, go postal.

It intrigues me about the hot shower. I'm also a hot shower sitter when I have the headache, but it seems so counter intuitive that adding heat to my head would be helpful when a major part of migraines is the spasming of the blood vessels. Brings me back again to the sinus component.

Couple years ago my HMO had big news in their health news letter. "New study shows sinus problems can trigger migraines." If they listened to the patients, they could have saved the study time...

What do people without healthcare do? My Immitrex alone comes in at about $500 every 3 months. My copay is $15.

 

[letsgorangers]

Whoops, this "migraine hangover" you speak of is half the reason it has taken me so long to get back here. No headache today, but very much pressure in my head (hinging on pain...which could mark its return) and pure and total exhaustion.

I saw someone mention Midrin. That stuff did not work for me. My doc (NOT my neuro) made me continue taking it after I told him it wasn't working and I was so dizzy I couldn't stand up. I don't like that stuff. Since I am also dealing with daily tension headaches, a preventative is absolutely necessary so I can keep up with life. Before the preventative, I was taking pain killers and muscle relaxers twice a day (it was prescribed that way) and it left me in somewhat of a fog always. Tension headaches it controlled because of the muscle relaxant; migraines were still able to break through. I took that regimen for about 4 weeks and had approximately 1 migraine a week.

Triggers that I know of are: not getting enough sleep, sunlight (this is a huge one), yogurt (this is iffy...). Strong smells (like nail polish remover -- I only mention this because I had my nails done a few days back) will not give me a migraine immediately, but will start a headache.