For those with migraines and frequent headaches

To go back and answer the first part of this thread, I had terrible hip pain for about 18 months to 2 years. It turned out i was bone-on-bone, but I never went to the doctor because I assumed I would just be told I was too young for a hip replacement. I got so I was lying in bed all day on the weekends. I couldn't sleep, but at least that wasn't putting weight on it. I seriously thought about ending it. Pain is so hard when it is unrelenting.

I am so sorry Gary is going through this. I absolutely understand. And I know it's probably worse in some ways for you, Laurie, it's watching a loved one go through something you can't help them with in any way. You feel powerless, even though you would do anything to take their place.

I guess the main thing I get out of all of this is that I need to make sure that there would be no regrets from the "did we do everything Gary was willing to do" perspective - and not having the discussion or making the decision when he's coming from a place of depression. The frustration will always be there, but it needs to be a cognizant decision, not from a place of giving up, but from a place of - for lack of a better word - practicalities.

My husband has had a constant headache for about 3 years now too, although not nearly as severe as Gary's. For months, his will be around an 8 on the pain scale, then mgiht drop down to a 2 - 3 for awhile, then just shift around on the scale, but never goes away. He has been to a neurologist who throws his hands up in the air, a chiropractor, a massage therapist, and an acupuncturist. He actually gets almost total pain relief while AT the accupuncturist, but once we leave and he bends over to get in the car, the pain returns. (If we could just keep the needles in full time, he might feel pretty good).

We went on a cruise last year, and oddly enough, that's when the pain dropped from an 8 down to a 2, and now only intermittently jumps back to an 8, so as someone else mentioned, there is something about "getting away from it all". Perhaps the sea air, the change in food, something.

Anyway, against drs orders, my hubby treats his headache with Vicodin and Tequila (when its an 8 on that pain scale), since nothing else helps. It makes it "livable". When he was constantly at an 8, we had the discussion about how much is too much, and I just let him know that I fully supported him, no matter what, because I also know what it's like to have migraines, since I have them at least once a week, lasting from 1 - 2 days. There have been times where I've ended up in the ER with a morphine drip because I'm such a whiner. I hate to say this, but if I were Gary, I probably would have given up long ago. (I'm not a depressed person...only when I'm in a great deal of pain). I'm one of those who believe in quality of life vs quantity.

I have sinus headaches that can border on migraines. I get them every time the weather changes, which in Kansas can be daily, and often when exposed to strong scents (like perfume). Typically OTC medications help them but there are times (like this morning), when the only thing I can do to escape the pain is to close all the curtains, put a blanket over my head to block out all light and sleep it off. Just woke up from sleeping off a migraine level one this morning. Then there are times where I can knock out the intense pain, but have to limit myself the entire day or it will come back over and over, and a simple thing like moving my head too fast will bring it back.

I know mine aren't nearly as bad as Gary's, but are bad enough at times to have a sense of empathy of what he goes through day after day.

Laurie- You said you did an elimination diet(s) to rule out food triggers and that you avoid MSG. Do you also avoid food coloring (Red 40, for example) and High Fructose Corn Syrup? Those things can can do *nasty* things to a person, and they're in a lot of things that you wouldn't suspect.

I doubt this is new information, but I just thought I'd mention it. *hugs*

I just began getting migraines about 2 years ago. I've always suffered from frequent headaches, but most of the time some exedrine and some sleep would ease them. But my migraines leave me out of commission for at least 24 hours. I've tried several different prescriptions, but none really relieve the migraine but simply knock me out. I was getting a migraine every 2 weeks or so when I first started getting them. It was affecting my school and work. So after drugs failed I started keeping a migraine diary documenting my stress levels, food that I had eaten, and anything else that seemed relevant. I've been able to calculate what my triggers usually are.

Stress and lack of sleep are usually my triggers. So I've once again gone on an anti-depressant (which I need to be on regardless), which allows me to control my everyday stress. I also make it a point to get at least 6 hours of sleep a night, even if that means having to take a mild sleeping pill. Also, I always wear sunglasses and never read/computer surf/type for more than thirty minutes without taking a break.

I now only get migraines every 2 months or so. Then I just have to take tramadol and something for my nausea and lock myself away in a dark quiet room until it passes.

Originally Posted by LDG

I guess the main thing I get out of all of this is that I need to make sure that there would be no regrets from the "did we do everything Gary was willing to do" perspective - and not having the discussion or making the decision when he's coming from a place of depression. The frustration will always be there, but it needs to be a cognizant decision, not from a place of giving up, but from a place of - for lack of a better word - practicalities.

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Laurie, sorry to ask you so bluntly... But I am deducting this from your post and the original one... What you are saying by these, is that he is trying to make a decision about ending his life?
I am so very very sorry you both are going through this Laurie :vibe s:

I really wish there was an easy answer Laurie

I whine like a baby when I get a sinus headache. I can't imagine living with 24/7 intense cluster headaches like Gary does.

Just know that I'm always thinking about you two and hoping for a miracle

Laurie, I didn't read thru the entire thread, so don't know if anyone else has mentioned this.
A dear friend of mine married a man with chronic migraines. (I get the occasional migraine myself, but didn't understand exactly what 'chronic migraine' meant) Apparently, it's a rare day that her hubby doesn't have one, and it lasts for hours and hours. It got so bad he had to retire from his teaching job and go on disability.
They were told by a dr. in Phoenix that barometric pressure could be a factor. They movied to St. Louis last year, where the weather is, obviously, loads different. They found a specialist ( I believe at Barnes Hospital, but I'm not sure ) who came to the conclusion that there was actually a genetic neurological cause for the migraines. He's on tons of meds; from what I understand he actually has the occasional relatively pain-free day now.
Has Gary been checked by a neurologist? If you'd like more info on this man's diagnosis, I'd be happy to ask my friend for more details.
I am so, so sorry you and Gary are going thru this.

I get what i believe are Cluster headaches (i have no been diagnosed because i have no health incurance) What this means is i will get headaches daily for any length of time from 1 week to months in a row. Every day sometimes more than once a day i get a headache that ranges from a dull ache to head splitting, tear streaming, sharp pain. Luckly for me...mostly my headaches are between the two points and not ALWAYS terrible.

Only Ibprophin works, and only for a little while. Many times the headaches come back. When they are bad enough to keep me in bed i have to take perscribtion strength ibprophin and that sometimes doesnt work.

Between them and the insomnia i have my life is greatly affected, but not enough to need Narcotics.

The truth is addicts run in my family...and though i am the only one in my family without some type of addiction...certain meds make me REALLY nervous when i or someone i care about needs tot take them.

My hubby gets very very bad headaches as well and his do not go away with non narcotic pain relievers. He is on an anti anxiety which helps keep him from getting headaches so often, but once there he has to suffer through them. Sometimes for weeks.

I am sorry your husband is going through this kind of pain. Deciding to try narcotics is a hard one to make. You both are in my thoughts.

Sara, what you describe aren't cluster headaches. Unlike the name, cluster headaches aren't like regular headaches clustered together. If anyone wants info links, I have several that are very useful if you're trying to diagnose yourself.

They affect only one side of the head, the pain comes on VERY quickly, they last from 15 minutes to 3 hours (technical description, a number of people have been known to have them for in excess of six hours). Because they're caused by a dysfunctioning hypothalamus, which controls all your hormones and your body clock, for many they come at the same time every day (not the case for Gary any more). People suffering get from 1 to 5 or 6 attacks a day (usually). They are always triggered when you hit REM sleep, and often your hormone levels are screwed up. Symptoms usually include a tearing eye, dropping eyelid, dilated pupil, and the most intense point of pain is in the eye on the affected side of the head. Most describe it as feeling like a white hot fire iron poker has been stuck in the eye and is trying to rip off the top of your head.

Most clusterheads are "episodic," meaning they get them for several weeks or several months, once or twice a year. 3% of clusterheads are chronic - meaning they have them daily at least 50 weeks a year.

Here is a video (just 3.5 minutes excerpt) of someone suffering:
The pain is so great that you cannot sit still.

According to the Mayo Clinic, the worst pain of a cluster headache is 100x worse than the worst pain of a migraine. In fact, cluster headaches are supposed to be the most intense pain a human can experience.

Clusters are affected by pressure - clusterheads have trouble flying, and relocating to near the equator at sea level does appear to help.

The average time from onset to proper diagnosis is 6.8 years.

Gary spends an average of 410 minutes of every day in attack - that's 28% of every day. Of course some are much worse - others aren't quite so bad.

He sleeps in 10 - 20 minute "bouts," passing out every once in a while for 2-3 hours - if he's lucky, once every month or so for somewhere between 5 - 8 hours. He gets on average 162 minutes of sleep a night. The problem with clusters is that when you hit REM sleep, they trigger. So it's not just an issue of being in pain all the time - he struggles to feel like he's not going insane from lack of sleep. His average level of pain during an attack is a 7.4 (bear in mind that on a scale from 0 - 10, a "10" is supposedly 100x worse than a migraine). When not in attack, his average level of pain is a 3.2.

He has become very sensitive to pressure changes. Today, the front that moved in yesterday left. So my day started waking up to Gary in so much pain he wasn't able to make the morning call (he's a stock market strategist, so he's supposed to call the trading desk to give them his outlook on the world). He got some narcotics down, which pushes back the pain a little bit (they don't get him high at all any more). Gary's been in a "fight it" mood for the past few days. We were able to go out, do some laundry, run a few errands. We were out for five hours - and he was in so much pain by the time we were done, he was going insane on the way home - couldn't control the crying. For some with clusters, a lot of physical activity can help relieve the pain, for others, physical activity is a trigger. Gary is one for whom physical activity is a trigger.

So he gets to spend the afternoon screaming (quietly).

He gets to spend the better part of his nights, alone, awake, in pain - watching me sleep, trying not to wake me when he has attacks.

Actually, the wikipedia page is pretty informative now: http://en.wikipedia.org/wiki/Cluster_headache

Originally Posted by Wikipedia

Pain

The pain of cluster headaches is markedly greater than in other headache conditions, including severe migraines, experts have suggested that it may be one of the most painful conditions known. Some female patients have reported it as being more severe than childbirth.[7] Dr. Peter Goadsby, Professor of Clinical Neurology at University College London, a leading researcher on the condition has commented:

"Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful."[8]

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..only Gary hasn't gotten that "break" that an episodic sufferer gets for over three years now - not ONE MINUTE of pain free time. He gets between 5 and 10 attacks a day. He has been chronic for four years this March. They began in 1999.

I put that I have migraines and have to suffer through them because I've tried various tryptans, Botox, Topamax, and others and have gotten no relief. I'm seeing a new neurologist tomorrow who only deals with migraines for a living, so maybe he'll have some ideas. If not, I'll be flying up to U Michigan to see a specialist there.

Oh Laurie, Gary's story just makes me want to cry. I wish I had some words of wisdom or comfort for both of you. It's so hard to see a loved one in pain; I can only imagine what you're going thru along with him.
Sending you my sincerest hope that you can find someone, somewhere to help Gary break this cycle.
Loving to both of you.

Laurie,
I am so sorry Garry has to go through this... I can not even imagine... I don't even have words....
I am sorry Laurie..... Many many many healing vibes

Does anyone suffer from those auras that indicate the beginnings of a migraine? I had one tonight and took something as soon as it started...the headache is not as bad as it was before. On Saturday I had some champagne for a friends wedding and my head was killing me afterwards - I guess it is a trigger for me so no wine for me anymore.

Does anyone suffer from those auras that indicate the beginnings of a migraine?

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I get a visual aura beforehand, usually just in one eye. The world looks as if water is streaming past it. I still have that sensation if I close my eyes. When the aura starts I head for the feverfew capsules and a drink with caffeine. Sometimes I have to resort to my rx meds, if the feverfew doesn't stop it.

I usually get auras with my normal migraines, too. Except mine start off first with an odd subtle symptom - I start having problems recognizing what I'm seeing. It's akin to walking into somewhere you've never been, you know a couch is a couch - but you may have never seen that one before so it's not familiar. I'll have that problem in my own home - my test for detecting an aura is that I can look at my own hand and it doesn't look like my hand. Then there's an aura that follows that looks like strings of broken glass. Usually by that time I'm not able to speak clearly, though that issue resolves itself shortly after the pain starts and the aura fades.

I've also had the weird attacks that wake me up from sleep. Intense pain always in my right eye that nothing helps. Eye lid gets droopy, too. Those actually line up more with the description of cluster headache symptoms but don't happen in clusters. I already have the ANS issues (improper vasodilation, reduced sweating, heat regulation issues, etc) so who knows.
While they're worse than my regular migraines I wouldn't call them the worst pain I've ever had - that award still goes to the GI/abdominal pain attacks which I suspect are from my pancreas.


Alcohol is a common trigger for migraines. For some it's a particular ingredient such as found in wine (like red wines) and for others it's just the vasodilation that all alcohol causes triggering it. If other alcoholic drinks cause problems in the future it's just the vasodilation.
I won't touch alcohol, but have had bad headaches and migraines triggered by other things that cause vasodilation - such as showering.

Originally Posted by LDG

We've been seeking the right treatment for four years. He moved from "chronic" to "all the time" three years ago. He's seen the experts, he's consulted with THE expert. The experts are out of options. There are three more things to try - we can't afford at least two of them, and to the tune of $80,000 for the "cheap" one. If we had a house to sell, we'd sell it. We've already sold everything we can - or are willing to, anyway.

No, he's not threatening to end his life. I'm just wondering at what point, when he really wants to, is not fair of me to continue saying he's got to keep living because of his love for me, because that is all that keeps him going.

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I am in the same position as your DH. I recently did some financial changes although I fully realize that life insurance will not pay if suicide can be proved.

In my case, I have became immune to all narcotics. My pain management doctor kept upping and upping the amount of morphine I could take a day until it reached the point it was doing nothing for me. Ditto on all the other narcotics I have been on. I told my wife I was going to be in trouble in the future when I went to the hospital because the silly pain reliever they give you would do nothing. I was right. Two years ago I was in ER and they told me they had to shove tubing into my lungs RIGHT NOW or I would die but they told me to not worry because they were going to dose me with so much morphine that I would not feel it. I knew better. The nurses were trying to hold me down and I was screaming like a baby.

I finally told my pain management doctor that none of his drugs could do anything for me and he said well you cannot just stop taking them so go on Valium for a couple of months to wean you from the hard stuff. Since stopping the hard stuff, my headaches are now 24/7. The Valium in no way makes me any more happy than alcohol. I will be going off of it in two more days so my typing skills should improve again.

There is one thing that you can do that is entirely legal. Fly to Amsterdam. You CAN legally get what you need, whatever it is, for pain. Of course you could move to Amsterdam, but find out exactly what drug actually works; for instance, opium. Come back and report that information to his pain management doctor. There are legal opium derivitives available. Depending on his condition, California is another option. You can also cross the border and immediately see signs for instant prescriptions, 24/7.

For more precise information, PM me. I have had the electric shock treatment installed in my body and three back operations in the last 12 months so I can sympathize and maybe come up with something. Have you considered the implant in the spine that regulates the amount of drug being released that controls headaches, etc.? PM me and we can compare notes. It is possible we have had the same nuerologists or pain management or back or yes, even foot doctors. (I was told after seeing four foot doctors my foot pain was coming from my back.)