A question of debilitating migraines

Helix said:

I can see why trepanning was popular in the past. Sometimes it feels that the only solution is to cut out a piece of skull to relieve the pressure.

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You know, I was thinking it, but I didn't want to be the one to talk about that part first. Thank you, Helix. You opened the door.

Helix's comment about trephaning sums up how I felt as well. I'd have fantasies about drilling a hole in my skull to reduce the pressure and pain.

They used to tell us that migraines were "vascular headaches," caused by dilation of blood vessels in the meninges of the brain. But I believe it's more complex than that, and they're still not sure what causes them and whether the blood vessel dilation is more a consequence of the migraine than the underlying cause. They could be related to the Trigeminal nerve and serotonin levels, and possibly other neurotransmitters, though there have also been studies that are investigating the role of fluctuations in potassium ion levels the sensory neurons associated with dural tissue (protective membranes enclosing the brain).

They are indeed a neurological disorder, and the symptoms of a migraine resemble those of strokes. They aren't strokes, as strokes are caused by an interruption in blood supply to the brain, either via blockage of an artery or rupture of a blood vessel. Migraines don't appear to cause actual brain damage, but they sure feel like they do at the time.

I 've had frequent usually mild migraine headaches since my teens, and visual migraine auras maybe 5 or 6 times in my life. Only once did I get them together, last week.

I'm one of those who suffers migraines from food intolerances. I can avoid them completely providing I don't eat/drink a long list of foods including strong coffee, wine, vinegar and tomatoes. Mine begin with an intolerance to light and flashes, and/or feeling nauseous. But, when the pain kicks in, I will be unable to see for 24/48 hours, have to lie down in a darkened room and can uncontrollably projectile vomit for England. For me, a migraine is a completely debilitating experience. As for how they can interfere in everyday life, I'll tell you what happened before I realised that tomatoes had become a trigger.

I was invited to a friends house for a jewelry party after we both finished work. I rode my motorbike to her home and she fed me a macaroni cheese tea which had tomatoes in it. As she began to get ready for the party, I began to struggle with the indoor lights she'd lit, my vision began to tunnel and I started feeling sick. As the party began, I felt so nauseous I quietly took myself into her downstairs toilet. A few minutes later, I was trying to clean the loo, the walls, myself and the floor. I was gone for such a long time, she came looking for me. By this time I could barely see and the pain was becoming overwhelming. All I could do was garble apologies. She was lovely about the mess, took very good care of me - drove me home - but I was off work for the next 2 days.

This particular migraine took around 30 minutes to hit, but when it did it was devastating. Fortunately, having witnessed how ill I became, my work-friend explained to our boss and he was very understanding. But, I could have been stranded unable to ride my motorbike home, I could have had no witness who knew me and was able to take care of me and I could have had a boss who thought that I was swinging the lead.

My migraines are different... I have a condition called Occipital Neuralgia, which, for me, causes a dull headache 24/7, and every now and then, it "flares up" to shoot flaming, pulsing agony along all of the nerve endings in parts of my scalp and skull, or just one side. It goes over the top of my skull and wraps around the head into the eyes and sometimes above the ears. When a flare up happens it feels like someone has put a cuff over my head and is squeezing things. It's different from a stress headache in the paths it follows, just so everyone knows.

Occipital neuralgia gets its name from where the nerves that flare up start at the occipital bone at the back of the skull. It is basically malformed, compressed nerves that either develop that way in the womb, or are injured somehow, which causes the compression and therefore, the constant pain.

My old doctor (retired in December 2014) believed in my case it's caused by falling out of a shopping cart and hitting my head when I was 3 years old, and within a week, cracking the other side of my head on a boulder in our backyard. (There are photos of me that Christmas, with two black eyes and my entire face and head swollen. My mom said I was lucky to survive both incidents.)

I live with a constant dull ache in the back of my head, that is easily aggravated by a lot of things... Stress is a major factor for it. The more stress I'm under, the more likely I'll get a flare up.

Another thing is too much light. I have to wear dark glasses outside even on stormy days, just to prevent my eyes from squinting, which can trigger a flare up. Sometimes writing all day will give me a flare up, so will watching a lot of TV, because of the light they emit.

Getting upset - think a fight with my husband - is a huge trigger for a flare up. I'm glad he and I rarely fight, even though I've been ultra sick and cranky the last two years...

A lot of loud noises, like the TV being up too loud for a long period of time, and yes, loud music can give me a flare up. This is why I pack the ears full of cotton when I attend live metal shows in my area. I'd rather risk a flare up than give up something I enjoy immensely.

Reading isn't good for it either, which is a pain considering I'm a voracious reader when I'm not writing.

Sometimes just having a shower with the water too hot will trigger a flare up... The nerves get warm and overheat, causing them to swell.

Being overtired is another factor, as is hitting the head.

I am able to function with the "normal" range for me - think 5 to 6 on the pain scale of 1-10. However when a flare up hits, I am knocked flat.

For me the only thing that helps is laying in a dark, quiet room after taking some pain meds - usually ASA or OTC codeine and ASA - with gel ice backs wrapped around my head, to cool the nerves, reduce the swelling and to numb the areas affected. Sometimes I do use an anti-inflammatory cream to help reduce the swelling around the back of my neck and along the hairline but it doesn't always work. I've never gone to the ER to get pain meds, I refuse to do it. The one time I had demerol, it made me sick and didn't do a darn thing for me - I was in labor with my son at the time though.

There are more invasive methods to help but it's not always guaranteed. There is decompression surgery (most extreme), nerve block injections, and ultra strong pain meds. I'm just not ready for those yet, although I am considering the nerve blocks once my writing career gets off the ground more, especially if I start traveling to conferences and so forth. My current doctor doesn't want me to have surgery. She's worried it'll cause the ON to get worse. Not that I'd consider it anyway. I'd rather have the nerve blocks and those scare me as it is... The only needles I don't mind are tattoo needles.

What I've done to reduce the amount and severity of flare ups is to make my life as stress free as possible... I am a stay at home mother to an almost 13 year old on the autism spectrum, so I don't work outside of the home... I used to moderate several forums, but have stepped down from those positions. I write only part time. I have reduced my TV time to less than 10 hours a week, it's generally 3 at most these days, and I rarely watch anything on DVD/Blu Ray, etc. as well, to be safe. I read, but stop when I feel a flare up coming on. When I leave the house in the daytime, I am always wearing clip on sunglasses or full sunglasses over my prescription ones. I limit my caffeine intake. I'm diabetic so I have to watch my glucose, that will trigger a flare up if it's not within normal parameters. I'm also anemic with low iron stores, so that can affect things as well. I'm exercising but I have to take it easy doing that too because making my heart race too much or pushing myself will trigger a flare up if I'm not careful. I avoid conflict as much as I can, and try to enjoy life even with this condition.

Thankfully I have an amazing husband who does his best to take care of me on the bad days and helps me have fun on the good to great days. My mom in law is amazing, and gives me ideas on what I can do to help reduce the severity of flare ups and the frequency of them, and my brothers in law are kind and understanding. My mother is really good too - she used to help me with cold compresses and watching over me when I was so sick with flare ups in my teens that I couldn't see or when I was barfing up my guts from the pain.

I hope this helps.

Occipital Neuralgia information:
http://www.hopkinsmedicine.org/heal...rs/Occipital_Neuralgia_22,OccipitalNeuralgia/

I've had migraines since I was two. However, I've been extremely lucky in that they respond reasonably well to ibuprofen if I catch them early enough, and their progression is predictable.

For me, it starts as a normal headache, which I can easily ignore and power through my day (for a baseline comparison, this normal headache is roughly equal to a bad hangover...no biggie). If, at this point, I pop some medicine, I can often head it off at the pass and avoid the migraine completely.

However, that window is limited. If I don't take something early, because I'm out somewhere and no meds are available, or because it starts in my sleep, (I'm no longer foolish enough to hope it will go away on its own, and sleeping will NOT interrupt the progression, as I've learned the hard way)...then I hit what I think of as the point of no return. That's when things get ugly.

The headache worsens steadily until I, too, have thought death would be preferable. Then the nausea hits. Sometimes I see auras, sometimes not, but the nausea is guaranteed. I will vomit regularly, every 10 minutes or so, over the course of 1 to 4 hours, regardless of whether there's anything in my stomach. At this point, pills are no longer an option because I'll just throw them back up.

I hate when I get migraines around new people, because even if, as it's ramping up, I tell them what to expect and explain that I will be fine, when it reaches the puking stage, I look like crap, and they invariably want to take me to the hospital. One guy I dated was absolutely convinced I had taken illegal drugs or something and was simply refusing to tell him the truth.

Between each bout of vomiting, I crawl back into bed and try to sleep. During this phase, I also have cold sweats. A blanket is miserably hot, and no blanket is shiveringly cold. When I finally manage to sleep, I'll be out hard for several hours, and when I wake up, I feel great, like a clear sky after a storm.

To answer the OP, if I were thrust into a life and death situation, I could probably function enough to survive. After all, I can, even with the worst migraines I've had, walk enough to reach the bathroom to barf, and talk enough to reassure people that I'm not dying. However, if I needed to be silent or odor free to survive the scenario, I'd be in trouble, because the barf will not be denied.

Hope this helps. Sorry if it's gross.

my son gets migraines, they come on out of the blue for no reason, if he vomits we send him to bed with a bean bag(we have about 4 of them kept in the freezer) turn his fan on and he sleeps it off, if hasn't vomited I give him max dose of tylenol, bean bag and he still lies down and sleeps it off.

For me I take advil, a bean bag and a dark room.

My daughters grandfather used to get cluster headaches, they came on like a thunderclap and were very debilitating for him.

Mine are characterized as an intense throbbing pain, it feels as if my skull wants to crack in half, I become sensitive to noise and smell. Thankfully I rarely get them.

There is such a thing as a Thunderclap migraine.

My father used to get them when he was doing a lot of court work and had to be driven home on occasions.

I have had one - more than enough, thank you. Ever since my late teens I have had persistent headaches which are not easily stopped by things like ibuprofen, and took no special notice of this one. I happened to be at home and my wife was out. The first big mistake was having lunch because that added nausea to the headache and then I pretty much lost vision from my right eye, with blue haze around everything on the left. I was dizzy, disoriented and basically felt like crap. I had a few paracetamol which took the edge off, I think - it's hard to be sure - and just waited until my wife got home and drove me to the doctor who prescribe something which settled it down within an hour or two.

It was probably no more than a few hours for the worst phase but I carried the pills the doctor prescribed for years after. That was 15+ years ago. I still get the persistent headaches, which come in batches - I can go months with nothing, then get them every few days for weeks - but I've learned to live with those and paracetamol does help.

I get them a few times a year, mostly related to my menstrual cycle.

I can feel them coming on. I get a particular kind of nausea, accompanied by an almost euphoric feeling like an out-of-body experience that lasts for about an hour, followed by dizziness, and a feeling like my brain is expanding so much my skull is going to burst. It's not pain, per se, but a completely unbearable pressure. It's times like that when trepanning seems like a sound medical practice.

When I feel the nausea begin, I can take a dose of acetaminophen and ibuprofen with a caffeinated drink. Sometimes, that brings me out of it. If not, I know when to quit and go home before the dizziness hits and I can't drive safely. Once I get to the dizziness stage, the only thing I can do is lie down in a cool, dark place with a cool compress on my eyes and wait it out.

Luckily, they usually only last a few hours. I've never had one last longer than a day.

I have a very strange tale to tell.

I get migraines only occasionally now, and they are nothing serious; they go away after a few hours at the longest. But seven years ago at the beginning of August, I got a migraine which lasted exactly for a month. It was living hell. I'm the breadwinner in my family, I had to work and function, but I seriously thought of killing myself, because for the whole month the pain never went away. Head full of hot lava being constantly mixed and whisked about, so that it was difficult to open my eyes sometimes. Of course I went to see my doctor, and as I'm allergic to a lot of painkillers, he gave me some special stuff which is used for the immediate treatment of severely wounded patients (traffic accidents etc.) Even then, the pain was so persistent – I'd say the pills took away about 60-70% of it, but it was still there it woke me up at 2 or 3 AM, and I had to rush to the kitchen for water and pop the next pill so that I could sleep again. I got an MRI done, it showed nothing. Then in the middle of September the pain stopped – but it left me a permanent gift. You see, my hair had always been straight, but during that horrible month it started to change, and at the end it was curly. It still is. I like my hair a lot more now, I always wanted to have curly hair, but the whole thing scared me shitless and no one has ever explained it to me.

My late partner suffered -- and I mean suffered -- with migraines. It seemed they were brought on by anxiety and stress. Once he retired, they almost went away.

He was hospitalised on two occasions years apart. On his first admittance into hospital, he was prescribed Immigran, (don't know what this might be called outside the UK) which was the only thing that ever did any good. Light sensitivity, visual disturbance and vomiting heralded an attack and the only thing he could do at that point was lie down in a darkened room and pray he got some sleep. On serious attacks, sleep was impossible,. He would likely be disorientated, and have cognitive impairment that might last for several days after the migraine. As an example of his level of confusion, when I went to visit him in hosp after a really bad one, I found he was trying to telephone me. The nursing staff had brought a portable payphone to his bed, but he was trying to dial me on the drip thingy he was still hooked up to.

I understand it is possible what he had with one of his migraines from hell was a hemi-plegic migraine, which seems to have a lot in common with a stroke, but you should be aware that neither of us had, or have, any medical training.

Functioning with a migraine would depend on the severity of the attack, but in my partner's case something life-threatening would have probably pushed his stress levels up, and that in itself would have made the migraine worse. Maybe something to think of?

Timely question since I had one last night and still have what I call the "hangover" from it today. The one last night started as just a normal headache, nothing I could handle. Then the auras started. For me that means that the edge of my vision starts to go blurry and off... then I will get almost streaks of bright light. This will then cause dizziness.

Now, if I get enough drugs in me and can stop trying to focus on things I can usually head it off there. Last night I decided to ignore it and kept watching online videos. I'm an idiot.

The next step is light and noise sensitivity for me. Then the nausea will hit. Sometimes I throw up, sometimes I can keep it from happened. But any sort of movement gets my stomach rolling and the head pounding even more. I pretty much have to lay in a dark and cool room curled up in a ball.

I think the freakiest thing that has happened with a migraine is the time I experienced numbness. It has only happened once thankfully as it scared the hell out of me. First my thumb and pointer finger went numb which I thought was really odd. Then my middle finger began to get numb while I got feeling back in the thumb. This happened all the way through my fingers. One would go numb while the previous would get feeling back. Then my hand began to go numb and it traveled all the way up my arm.

And the really off thing is I could feel the numbness moving. Like, it started at the tip of my finger and I could feel it move down. It was so freaky and I was so scared and worried about what was happening.

talktidy said:

On his first admittance into hospital, he was prescribed Immigran

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If memory serves, the first listed potential side effect for Immigran is "headache", which always struck me as kinda funny, considering what it's prescribed for.

be frank said:

Eye health professional, checking in.

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I don't get migraines myself, I thought I had one once, but I gather that 'one, once' probably is more of a bad headache than a migraine.

I have a question for an eye-health professional, though. I work in the lowest levels of health insurance in Canada (supplemental private insurance) and I see claims come in for Botox injections for migraines. Does this work, does it work for some kinds of migraine, or is it just a combination of desperate patient/eager Botox peddlers? As far as I know, it's accepted if the patient provides the appropriate letter from their doctor.

frimble3 said:

I don't get migraines myself, I thought I had one once, but I gather that 'one, once' probably is more of a bad headache than a migraine.

I have a question for an eye-health professional, though. I work in the lowest levels of health insurance in Canada (supplemental private insurance) and I see claims come in for Botox injections for migraines. Does this work, does it work for some kinds of migraine, or is it just a combination of desperate patient/eager Botox peddlers? As far as I know, it's accepted if the patient provides the appropriate letter from their doctor.

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Heya, frimble3. I won't give health advice on an open forum, and I haven't actually dealt with this professionally, but Botox is a known treatment for migraines.

As a personal anecdote, my sister-in-law has had terrible, chronic migraine (or at least what's been called "chronic migraine") for the last year or so. She's being treated with Botox and she tells me it really helps.

be frank said:

Heya, frimble3. I won't give health advice on an open forum, and I haven't actually dealt with this professionally, but Botox is a known treatment for migraines.

As a personal anecdote, my sister-in-law has had terrible, chronic migraine (or at least what's been called "chronic migraine") for the last year or so. She's being treated with Botox and she tells me it really helps.

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Yeah, I understand about the 'not giving medical advice on the Forum', that's why I started out with 'I am not a migraine sufferer.' I suppose I should have PM'd you, but I was just sort of curious as to Botox's usefulness vs. just an effort to find more 'legitimate' uses for Botox. Botox in the forehead to take out wrinkles, we don't pay for, but for migraines... well, good to know that it's actually therapeutically useful. Thanks for replying.

mrsmig said:

I often wonder about the migraine-to-eye-health connection. Everyone in my family is nearsighted, and two of my sisters have experienced detached retinas.

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No known connection there, AFAIK.

People with experience of migraines tend to associate them with eyes because of the visual aura. That aura is neurological though, and not ocular (unlike the "flashes" you get with detachments, which are caused by physical traction at the retina).

Perks said:

Thanks, Helix. (And I'm so damned sorry that happens to you.)

Can I ask, have you ever missed out on something because of one, and that it was really upsetting to miss it? And, if a very seriously situation happened in the middle of a migraine, can you guess at how your capabilities might be hindered or what you'd be able to do if it were really, really, really important that you had to react, move, and decide things?

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I had them - allergy triggered - in college and for a few years after that. The full range of nausea, severe pain, photophobie, dark spot in front of me, rainbow lights and an odd visual thing where there was a depression right in front of me - like a dimple in the floor or ground always where I was about to step.

One symptom that would make it difficult or dangerous to do things are the visual issues. Driving with the blind spot and narrowed field of vision, anything requiring eye/hand coordination (knitting, shooting, cooking) is not going to be easy.

Thinking clearly enough to make any kind of decision would be hard - between the drugs for the pain and the pain I would be hard put to do more than decide to lie down in a dark room.