Dealing with SEVERE Migraine Headaches.

[Bramblethorn]

I have also struggled with distinguishing between a migraine, a sinus and tension headache.....

Depends on the type of migraine; not all migraines come with the classical signs, but the ones that do are pretty distinctive. I used to call bad headaches 'migraines' until I had a full-fledged classical migraine. The first I noticed was when I was having trouble reading the computer screen - I had a little dazzled spot in the middle of my vision, like you get when you catch a reflection of the sun for a moment.

Over the next half-hour it expanded to take up the whole of my vision. It wasn't exactly going blind, more like looking at the world through a huge kaleidoscope - I could see colours and textures but my brain couldn't interpret them into shapes.

Then the worst headache of my life, like somebody driving a hot needle through my skull. And after the headache passed, horrible nausea - I spent half an hour leaning over the bathroom sink wanting to throw up, but nothing was happening.

Since then I get them occasionally, but never anywhere as bad as that one, and when my vision starts to play up I know it's time to break out the ice and painkillers.

 

[Recidiva]

There's another distinction to be made regarding headache types. My headache model is more of a seizure and an autoimmune reaction to my own hormones. It's a cascade of neurological symptoms and doesn't involve vasoconstriction. Much more of a literal brainstorm and misfiring of chemical and electrical impulses.

 

[Recidiva]

This is exactly what happens to my vision.http://www.knownjohnson.com/?p=73

Sometimes it blows out into a full on migraine, other times it ends when the vision returns to normal.

That's a very cool visual example.

I get cognitive aura, which means my mood plummets and I become disoriented and find it difficult to retrieve words.

Harder to show that, but take that visual example and apply it to a page with writing on it representing the brain, with the spreading disorientation wiping out access to the words on the page and the functions of the brain.

 

[heavyhitter01]

The progress of this thing has me worried.

First, we have a almost clean period of at least 15 years. The primary trigger seemed to be estrogen (headaches before a period) plus several of the usual culprits like chocolate and alcohol. Inderal (propranolol) worked as a preventive. The headaches were rare, and were stoppable with Maxalt (rizatriptan). A pain rating might be 7.

Two weeks ago, we started sudden massive headaches, redefining "10" at the top of the pain scale. No obvious triggers. Maxalt stopped working. 3/4 of the time there is some headache as bad or worse than those of the clean period.

One week ago, position became important. Only standing up would lessen the throbbing in time to her pulse. She started sleeping in a chair. (CT, CTA, LP test had been run and were negative.)

2 days ago, stroke like symptoms were added as precursors. Some sufferers will see an aura or have other synthesia ahead of migraine pain. We mimic the start of a stroke, then add a massive headache like something burst. (MRI shows no stroke.)

What new symptoms will we add next week?

That's what's got me worried the most!

This.

I normally don't post outside of a few select threads, but reading the first post compelled me to join the chorus.

The MRI might show no stroke and they might not be able to figure out what is going on AFTER the fact, but have they evaluated her DURING one of these episodes? If not, it's time to do that. Something is obviously happening, and the progression of symptoms makes me think it's more than just a migraine.

On another note, I have to say that I love how you use the term "we" when discussing her symptoms. It sounds like your SO needs all the help she can get right now, and that means she needs the "we" that a loving partner can provide. Good luck to you both.

 

[desertslave]

Depends on the type of migraine; not all migraines come with the classical signs, but the ones that do are pretty distinctive. I used to call bad headaches 'migraines' until I had a full-fledged classical migraine. The first I noticed was when I was having trouble reading the computer screen - I had a little dazzled spot in the middle of my vision, like you get when you catch a reflection of the sun for a moment.

Over the next half-hour it expanded to take up the whole of my vision. It wasn't exactly going blind, more like looking at the world through a huge kaleidoscope - I could see colours and textures but my brain couldn't interpret them into shapes.

Then the worst headache of my life, like somebody driving a hot needle through my skull. And after the headache passed, horrible nausea - I spent half an hour leaning over the bathroom sink wanting to throw up, but nothing was happening.

Since then I get them occasionally, but never anywhere as bad as that one, and when my vision starts to play up I know it's time to break out the ice and painkillers.

I started, in my teens, with the classic migraine complete with freaky light show, nausea/vomiting, light sensitivity, and one-sided numbness. In my 20s the start changed. I would get pinhole vision or lose vision on the same side of both eyes, and numbness on the same side, on my hands. That whole mess went away when I got pregnant with my first kid, never to return. However, when I tried low-dose birth control pills to control excessive bleeding 20-ish years later, I got that bizarre visual stuff you're describing. Mine was only black & white, but it was like a B&W pinwheel that would start in my central vision, dominate most of the field, then gradually wander off to the side. I would get "dull" and somewhat confused at the same time. As soon as I quit the pills they went away.

It's bizarre and somewhat scary what hormones can do to us.

 

[Bottomlover]

2 days ago, stroke like symptoms were added as precursors. Some sufferers will see an aura or have other synthesia ahead of migraine pain. We mimic the start of a stroke, then add a massive headache like something burst. (MRI shows no stroke.

Ask your doctor to look into the possibility that you have a PFO (Patent Foramen Ovale). 20-30% of the population have this, and studies have related it to migraines. Most of the time a PFO does not cause problems, The test for it has some risks, so it is not done unless there is a problem. Do some Google research and talk to your doctor.

I'm not a doctor.

 

[NeonKnickers]

This sounds scary. I'm sorry you both have this on your plate. Best wishes!

 

[OnceFuturePoly]

Good news -- got through the last 2 headaches without having to resort to the emergency room! None of the stroke-like symptoms either time.

Biggest difference I can see is that she's been eating Xanax and Valium. Suggests that stress is (or has become) a real factor.

(Yes, I know the different half-lives; at the start we were working from the medicine cabinets. Now the doctors have written scripts so we're adjusting the strategy.)

Went to the chiropractor this morning. Adjusted neck & back. Suggests coming back every 2-3 days. Will evaluate next week.

Sinus is said not to be a problem; doctors have checked several times.

Cat scans with and without dye did not find any aneurysms. Spinal Tap looked good. The MRI was done while the first "stroke symptom" headache was in progress. NTF.

Hormones and BC should not be a problem. Hasn't been on BC for decades. Menopause is here (or close) -- 1 period in the last 6 months, which came 3 months ago.

Ruled out Idiopathic Intracranial Hypertension with the LP.

http://www.knownjohnson.com/?p=73 was very interesting illustration (though not how her vision goes haywire).

Never heard of PFO (blue baby) being related to migraines. My mom was born with that defect...

Thanks for the news about A vitamins.

Again, thank you all for all the concern and suggestions. You've proven again that "none of us is as smart as all of us!"

 

[SweetErika]

Good news -- got through the last 2 headaches without having to resort to the emergency room! None of the stroke-like symptoms either time.

Biggest difference I can see is that she's been eating Xanax and Valium. Suggests that stress is (or has become) a real factor.

Very good news!

Like I said, a barbiturate helps me a lot. I believe it's two fold: the intense pain causes intense stress that increases the pain via several mechanisms, plus it allows me to relax enough to get some sort of rest, which is essential in 'breaking' the pain cycle. It's not sufficient on its own, but when combined with a triptan and/or analgesics, it's a good tool for relieving migraines, tension headaches and other types of severe pain.

 

[desiree_d]

Depends on the type of migraine; not all migraines come with the classical signs, but the ones that do are pretty distinctive. I used to call bad headaches 'migraines' until I had a full-fledged classical migraine. The first I noticed was when I was having trouble reading the computer screen - I had a little dazzled spot in the middle of my vision, like you get when you catch a reflection of the sun for a moment......

I wish I had some of the classic symptoms because then it would be easier to know when to "nip it in the bud". My mother experiences little color "floaters" before one comes on...since everyone is different, for me, I just know if it's settling on the right side of my head and eye I'm going to down for the count. I do experience the drill pain, that's when I want to drill back to relieve the pain.

 

[LoveToLurk]

The progress of this thing has me worried.

First, we have a almost clean period of at least 15 years. The primary trigger seemed to be estrogen (headaches before a period) plus several of the usual culprits like chocolate and alcohol. Inderal (propranolol) worked as a preventive. The headaches were rare, and were stoppable with Maxalt (rizatriptan). A pain rating might be 7.

Two weeks ago, we started sudden massive headaches, redefining "10" at the top of the pain scale. No obvious triggers. Maxalt stopped working. 3/4 of the time there is some headache as bad or worse than those of the clean period.

One week ago, position became important. Only standing up would lessen the throbbing in time to her pulse. She started sleeping in a chair. (CT, CTA, LP test had been run and were negative.)

2 days ago, stroke like symptoms were added as precursors. Some sufferers will see an aura or have other synthesia ahead of migraine pain. We mimic the start of a stroke, then add a massive headache like something burst. (MRI shows no stroke.)

What new symptoms will we add next week?

That's what's got me worried the most!

The symptoms of your SO sound horrible and scary. I've had chronic migraines for 35 yrs. I've tried different abortive as well as prophylactic drugs. I tried very hard but couldn't tolerate topamax. I was losing weight on it, which made me want to stay on it, but I was left so cognitively disabled, it was hard to finish a sentence or have any recall! That was awful. Now on amitriptyline daily. I also take high doses of magnesium and B2/riboflavin. There's a great book written by a neurologist - "the migraine brain" by Carolyn Bernstein, MD. that I recommend highly. I think finding a doctor to be a good team member is key. Best wishes

 

[desiree_d]

Keep Us Updated

Good news -- got through the last 2 headaches without having to resort to the emergency room! None of the stroke-like symptoms either time.

Biggest difference I can see is that she's been eating Xanax and Valium. Suggests that stress is (or has become) a real factor.

(Yes, I know the different half-lives; at the start we were working from the medicine cabinets. Now the doctors have written scripts so we're adjusting the strategy.)

Went to the chiropractor this morning. Adjusted neck & back. Suggests coming back every 2-3 days. Will evaluate next week.

Sinus is said not to be a problem; doctors have checked several times.

Cat scans with and without dye did not find any aneurysms. Spinal Tap looked good. The MRI was done while the first "stroke symptom" headache was in progress. NTF.

Hormones and BC should not be a problem. Hasn't been on BC for decades. Menopause is here (or close) -- 1 period in the last 6 months, which came 3 months ago.

Ruled out Idiopathic Intracranial Hypertension with the LP.

http://www.knownjohnson.com/?p=73 was very interesting illustration (though not how her vision goes haywire).

Never heard of PFO (blue baby) being related to migraines. My mom was born with that defect...

Thanks for the news about A vitamins.

Again, thank you all for all the concern and suggestions. You've proven again that "none of us is as smart as all of us!"

So glad to hear something is starting to work...and that the doctors are paying close attention to each change. Still in my thoughts...

 

[OnceFuturePoly]

So glad to hear something is starting to work...and that the doctors are paying close attention to each change. Still in my thoughts...

Thank you very much.

We're doing better. It's been a week since we had to use the ER.

There have been several headaches, all yielding to high doses combinations of aspirin, Advil (ibuprofen), Tylenol (acetaminophen), and butalbital. Most often she takes Xanax (alprazolam) when one starts. She's also taking high dose Aleve (naproxen) since we've been told by the doctors that lab tests show signs of mild inflammation.

I'm also "upping" stress as a factor. A couple of times, when starting to talk about her travails, she started growing a headache.

So the Topamax (topiramate) and increased Inderal (propranolol) medicines are gearing up and the headache severity is winding down.

She's still sleeping sitting up, but I think she might be ready to try laying down again. She lounged on the sofa watching the tub for a couple of hours without suffering. But no rush. Most of this is all highly empirical.

 

[desiree_d]

Medication

Thank you very much.

We're doing better. It's been a week since we had to use the ER.

There have been several headaches, all yielding to high doses combinations of aspirin, Advil (ibuprofen), Tylenol (acetaminophen), and butalbital. Most often she takes Xanax (alprazolam) when one starts. She's also taking high dose Aleve (naproxen) since we've been told by the doctors that lab tests show signs of mild inflammation.

I'm also "upping" stress as a factor. A couple of times, when starting to talk about her travails, she started growing a headache.

So the Topamax (topiramate) and increased Inderal (propranolol) medicines are gearing up and the headache severity is winding down.

She's still sleeping sitting up, but I think she might be ready to try laying down again. She lounged on the sofa watching the tub for a couple of hours without suffering. But no rush. Most of this is all highly empirical.

Ironically, I've gone back to the butalbital but with aspirin so I don't need an anti-inflammatory; I also will be starting Inderal this week. I can't take Topamax because there's a conflict with another medication which is similar to Xanax. I was too "foggy" to take both. I do hope this new regimen works out; and I'm hoping the the Inderal will help me also. Take care

 

[oldschoolguy]

So I too USE to have severe migraines..

Floaters thru my vision, then the kalidiscope of colors etc. until I would finally go blind for 30-40 minutes then the big brainer would kick in and take me out for the next three days. This went on for 5 years, went thru the whole Dr./ med thing and nothing worked.

Then I discovered Marijuana....

I smoke daily, in the evening when my day is done. I haven't had a migraine in over 10 years now and I surely don't miss them.

 

[Bramblethorn]

I'm also "upping" stress as a factor. A couple of times, when starting to talk about her travails, she started growing a headache.

(Not helpful to you, but maybe to somebody else reading this thread) My main migraine trigger seemed to be "relaxing after a stressful day". They'd never kick in at work, they'd hit when I was settling down on the computer after I got home. Not amused!

 

[haha_on_me]

I started getting migraines at the age of eleven, by the time I hit my thirties, I was having puking migraines five days of seven. Not much of a life at that point. Smells, caffeine, sleep deprivation, and bananas were my main culprits. At forty, I had a bicycle accident which left me with a shattered elbow, dislocated shoulder and a broken wrist. Upon recovery from surgery, I was blessed with maybe a handful of migraines since. That was almost twelve years ago. Mind you, I have a headache everyday, just no longer migraines. I feel for the two of you, it's a miserable existence for you both. Don't give up. Endeavor to perservere, there's a solution somewhere.
I bless Excedrine for Excedrine migraine everyday, and always have a bottle within arms reach.

 

[FeistyScorpio]

Tell her to ask her neurologist about these rescue meds:

1) Motrin 800mg + Tylenol 1000mg.....together, at first onset of pain, aura, or any other symptom. It must be taken as soon as she knows a migraine is coming in order to be effective. It should only be taken once in a 24 hour period though because it's such a high dosage. It works wonders. My neurologist calls it a "migraine bomb." If I can do that the instant I feel a headache, tightness, or aura coming on, I'm good. If I wait so much as 30 minutes, it's too late.

2) If she has severe nausea, tell her to ask about Phenergan suppositories.

3) Instead of going to the ER, there's a drug available that's similar to Dilaudid. It's a nasal spray, called Stadol NS. It's highly addictive (as is Dilaudid), but it works. It's also far cheaper than an ER visit. Dilaudid is available in PO (by mouth) form, but if extreme nausea accompanies her migraines (as it typically does), she won't be able to keep medicine down. That's where the nasal spray comes in handy. It also metabolizes faster because the nasal passages are extremely vascular - that is, they have a lot of blood vessels - so it gets into the bloodstream much faster than taking pills by mouth.

If the Topamax doesn't help once it reaches the therapeutic level, don't give up. There are a ton of migraine prophylaxis meds available. Most blood pressure meds, some anti-anxiety meds, some anti-depression meds, and a few others are marketed off-label for migraine prophylaxis.

The migraine you mentioned in your post - the one that she thought was a stroke - is scary. It does in fact mimic a stroke. I've had several of these, and they scared the hell out of me.....and I'm a registered nurse. Once, it happened while I was at work, and it even scared the doctor I was working with at the time. He immediately got on the phone with my neurologist (and this was before the neurologist's office opened lol), who gave this advice: If I had my pain medication with me, he wanted me to take it (the Stadol). I did have it with me, so I took it. He said if the pain medicine doesn't relieve the symptoms, get to the ER. If it's a stroke, pain meds won't relieve the stroke-like symptoms (numbness, visual changes, etc). If it's just a headache (like there's any such thing as JUST a migraine), the stroke-like symptoms will go away when the pain subsides. Mine was in fact just a headache, and all symptoms subsided within about 10 minutes of taking the medicine.

I hope she feels better soon! Oh, one other thing you (and she) need to know. Topamax comes with some pretty intense side effects. They typically start out with 25mg, increase by 25mg every week then level out at 100mg. I was fine on 50mg, but when they raised it to 75.....holy shit. I got dizzy every time I moved, my appetite absolutely disappeared (I lost a lot of weight very quickly), and my short term memory sucked. I'd be in the middle of a sentence and couldn't even remember what I was trying to say. Those effects do decrease over time, but it's very frustrating and sometimes scary while you're going through them.

I also wanted to add that common triggers for migraines include food, chocolates, foods containing nitrates or nitrites (can't remember which), and they do tend to follow the menstrual cycle. Most migraines tend to occur during ovulation or right before her period. As some have already commented, migraines don't typically occur during times of high stress, but after the stress is relieved. I used to have migraines every weekend when I worked a very stressful M-F job.

Not all neurologists are good at treating migraines. I found an awesome neurologist, but his primary concentration is on strokes. Migraines are very tricky to deal with, and it's very rare to find a treatment that works on the very first try. It usually takes a cocktail (a combination of medications), and it takes a lot of time, patience, and trial and error to find the cocktail that works for that particular patient. It took me more than 20 years to find what works for me, but when I started out, Topamax wasn't available yet. The sumatriptan family (Imitrex, Maxalt, etc) worked great for me, but I had a severe allergic reaction to them. When Imitrex first became available, I had to give myself injections. The first 3-4 injections didn't bother me at all, but after that, I began having difficulty breathing. They tried to say, oh, that's just a common side effect. Not breathing is not a side effect, but chest pain/discomfort is. I refused to take more Imitrex unless I took it at the doctor's office and he was prepared to deal with anaphylactic reaction. He agreed. I came to his office the next time I got a migraine and took the medicine. He had to give me IV Benadryl and adrenaline, but after the emergency was over, he agreed that I should never take any of the triptans again.

Bottom line - always listen to your body. If your doctor doesn't listen to your body as well, find another doctor. You know your body better than anyone else, and you know what works for you and what doesn't.

One other thing.....most people's blood pressure spike during a migraine. This begs the question - is the blood pressure causing the headache or is the headache causing the high blood pressure? I strongly encourage you to buy a home blood pressure monitoring device - the easiest one to use without help is the one that wraps around the wrist. Monitor the blood pressure at the same time every day - always at rest (after sitting for about 10 minutes) - and keep a diary of the blood pressure and pain level at the time.

A migraine diary is also a good idea. Keep a diary of what she eats every day, any stress that she's under, or anything unusual that happens. Note in the diary what her blood pressure is and if she has a migraine (as well as rating the pain on a scale of 1 to 10). Note what medicines she took at what time, and how effective the medicine was (still using the 1-10 scale). It'll help the neurologist determine what triggers her migraines and what helps relieve them. Also note where the pain is, any other accompanying symptoms, any non-pharmacological techniques that she tried (ice, heat, rest, dark room), did the symptoms come on suddenly or gradually, and did anything happen immediately preceding the headache.

In the hospital, we use the PQRST method of charting pain.
P = provokes - what causes pain, what makes it better or worse
Q = Quality - what does it feel like? is it sharp, dull, stabbing, throbbing, burning, or crushing? Try to let the patient describe the pain.
R = Radiates - does the pain stay in one place? Does it go somewhere else? Did it start somewhere else and now localized in one spot?
S = Severity - how severe is it on a scale of 1 to 10
T = Time - what time did the pain start? How long did it last?

A migraine diary is a lot of work, but it's the best tool a neurologist has. I hope this information can help someone get their migraines under control. It's a shitty way to have to go through life.

 

[Weird Harold]

I bless Excedrine for Excedrine migraine everyday, and always have a bottle within arms reach.

You do know that Excedrin Migraine is exactly the same as Excedrin Extra Strength? The only difference is the box and label.

 

[haha_on_me]

You do know that Excedrin Migraine is exactly the same as Excedrin Extra Strength? The only difference is the box and label.

I do now, I just checked the labels. Thanks.

Good to know since many of the Excedrine products have been pulled off the shelves here.

 

[RICKM1]

If you are in an area that allows medical marijuana, nothing works as well a marijuana tinchter for a migraine.

 

[Dogma52]

I've had success with Imitrex (Sumatriptan). Comes both oral and inhaler.
Best of luck.

 

[Wildfire8470]

You do know that Excedrin Migraine is exactly the same as Excedrin Extra Strength? The only difference is the box and label.

I'm a newbie to this group but am no stranger to migraines. I did know that but, while Excedrin was still on the market, I really gave the extra strength a try, to no avail... Sigh...

 

[OnceFuturePoly]

For those who like to hear the end of the story...

1. She's at 100mg/day Topamax and the terriable side effects have not appeared.

2. The headaches are nowhere near as intense as a month ago. We've only had a couple in the past week. As an experiment, we tried Maxalt and it bit one in the bud. (Maxalt has stopped working when the headaches first got bad.) Advil and/or aspirin work well.

3. The last two days have been totally free of headaches.

So far, much, much better!

 

[bailadora]

Yay! Good news, indeed! Thanks for the update.