Dealing with SEVERE Migraine Headaches.

[OnceFuturePoly]

My SO has lived the last 10 years with just a couple of migraines a month, easily knocked down with Maxalt. Using a 0-10 pain scale, 7 or 8 was the max.

Two weeks ago, and without warning, she started getting sudden onset headaches that pushed the pain scale boundary upwards. Maxalt and oxycodone had no significant effect. Now, all of her head is involved. Before this on-slot, the pain would keep (mostly) to the top, or the sides, or the back of her head.

Since then, we've made 7 trips to the emergency room, and it takes Diluadid (a super strong morphine) to stop them. In 24 hours the headache will be back, and couple of days later it is super bad and we're headed back to the ER.

2 CAT scans (one with dye) and an MRI without then with dye, and a lumbar puncture (spinal tap) -- every test is negative, and she has seen a neurologist.

A week ago, position became important. The pain was a point less while standing up, and she's started sleeping in a chair.

Yesterday, she started showing stroke-like symptoms preceding the acute headache. Not understanding that they can proceed some migraines (like more typical auroras), we rushed to the ER worried that some sort of stroke was in progress. They looked hard but said she "only" had a static headache.

Her primary care doctor is adding topamax as a preventative, but will take a couple of weeks to ramp up to therapeutic values. We have nothing as an abortative anymore, save the drugs available only at the hospital.

Has anyone been is a situation like this? PM me please!

 

[SweetErika]

Would she be unable to keep something like oral dilaudid down, even with an antiemetic? If she's not vomiting with the headaches, that might be a solution for avoiding frequent ER visits until the topomax kicks in.

Another thing to talk to her doc about is a rebound and/or hangover effect. Some docs prescribe a codeine/Valium/caffeine/aspirin combo medicine (the name eludes me) or something else to take if the headache starts to return once the strong opioid starts to wear off. When I had acute migraines, that technique helped. When I have a very severe headache now, loading up on the opioid medication plus a light dose of Xanax typically works well. Of course if I suspect it's a migraine, I also take imitrex (which is cheaper than zomig, although I always found the zomig more effective). For me, it's all about treating the pain appropriately before it gets too severe as well as giving my brain and body a rest (hence the Xanax, which also helps avoid/treat any tension headache that is caused by the migraine or other severe pain). As much as I hate to take a lot of anything, loading up enough to break that pain cycle is absolutely critical; otherwise, I'll just be stuck chasing some kind of relief and wishing for decapitation!

Anyway, my point is kind of that by the time she resigns herself to an er visit, it may be too late for her to get lasting relief. She may want to discuss pain relief meds and measures with her doc or a pain specialist so hopefully she can avoid those er visits until she sees what happens with the topomax. Chasing pain and rebound headaches are well known, so maybe she can at least address those and perhaps try self-administering an antiemetic plus something stronger than oxycodone (or a larger dose of it) at the onset of the headache instead and/or get something for after the dilaudid has started wearing off. Things like massage, acupuncture, naturopathy, hypnosis and biofeedback are also worth asking about and looking into.

I hope that helps some and the topomax works miraculously quickly for her!

 

[sunandshadow]

That sounds horrible. But if your S.O. has had migraines for years, she probably knows all the common advice, like that a new batch of them can be cause by a new perfume, new food, new lighting type, or air quality problem. Caffeine, chocolate, alcohol are all common culprits. As far as non-medicine treatments, being in a dark, quiet room, keeping well hydrated, and making sure the air isn't too dry are standard things to do. Some people like a cold shower or ice pack, some people like heat better.

 

[Weird Harold]

Two weeks ago, and without warning, she started getting sudden onset headaches that pushed the pain scale boundary upwards. Maxalt and oxycodone had no significant effect. Now, all of her head is involved. Before this on-slot, the pain would keep (mostly) to the top, or the sides, or the back of her head.

I was diagnosed -- off and on -- with "migraine headaches." Experience has shown that the vast majority of my headaches were sinus headaches rather than migraines, although the symptoms were virtually indistinguishable from migraines. One notable difference is that a full-on sinus headache involved the whole head, and even the neck muscles, as well as the more typical migraine pains.

If the doctors haven't had any success in finding a problem when looking for migraine causes, perhaps they're not looking for the right causes? At least in my case, the two types of headache are nearly indistinguishable but an antihistamine or decongestant has far more effect on the pain than a pain=killer. I seldom need to use any painkiller stronger than OTC Excedrin Extra Strength.

 

[AKGhost]

I used to get migraines (take an oxy and crawl into bed with covers over the head and a bucket nearby) about twice a month from the age of 12 till I was almost 17. I was treated by everyone from the primary care doc to allergists and neurologists. I switched from my M.D. to an O.D. who alligned (popped) my neck and put things where they should be. On occasion now when I can tell one is starting up I make a quick trip in, get aligned, and go back to work.

If you are running out of options it may be worthwhile to talk to an O.D., chiro, phyisical therapist, or some of the other less traditional types. Sounds like you have tried everything else.

 

[dashd]

Many migraines have events which trigger them, ie change in sleep patterns, change in atmospheric pressure and even foods. (I will get a migraine every time I take a nap on a hot sunny day especially if humidity is high) Caffeine most notably can be a cause and cure if consumption habits are changed. Excedrin includes caffeine. Cafergot, a combination of caffeine and an ergotamine is a drug that can be used with migraine although its use in the presence of coronary artery disease could be dangerous. Caffeine, and caffeine like substances hide in a lot of food and beverages so I would first slowly taper and eliminate these foods and beverages and energy drinks. Some over-the-counter herbals are also in this category.

Headaches are caused by the spasm of blood vessels in the head and or neck. Caffeine and similar substances cause a constriction of these vessels and as the effects wear off cause them to spasm.

Another preventative measure is the use of a Beta Blocker. Beta blockers cause the relaxation of these same blood vessels.

Other possible medications include Tagamet, the oldest H2 blocker which is actually used as antacid, and the use of steroids (Prednisone orally or Decadron injectable) which are potent anti-inflamatory agents.

 

[CutieMouse]

Someone I know dealt with debilitating migraines for 15 years. It got to the point that none of the available meds (Rx and ER) worked anymore. She finally had surgery to implant electrodes in the scalp (like a TENS unit) with a battery pack in her chest (similar to a pacemaker). She has a little remote control thingie to adjust the stimulation from the electrodes, and she swears its the best thing she ever did.

 

[Recidiva]

I've had severe migraines for about 20 years.

I'm on a daily regimen of tizanidine and amitriptyline and LoSeasonique for daily preventive, and Imitrex for breakthrough.

My model is that my migraines are triggered by many things, light, strong perfume, etc.

But my main issue is withdrawal from my own estrogen triggers the worst ones. So the LoSeasonique is a birth control pill that helps regulate my estrogen levels. The other medications I'm help me get enough sleep (another huge issue) and help relax muscles.

I don't know if my specific situation would help, but it does help to locate what affects her most, what are her triggers, and do everything you can to keep going to different doctors until it gets sorted out. It took me approximately 15 years to fix them, ten of those were spent terrified of doctors and wasting time.

I tried Topamax and many, many other medical attempts at control, and only what I'm on now works enough to qualify as being a reasonably functioning human being. Topamax for me was particularly a disaster. I became suicidal quickly. I was really unable to evaluate what it did to me as I also believe it made me apathetic and cut my IQ in half. So my husband convinced me to stop taking it. Everything I ate tasted like chlorine and I was miserable.

Get to a neurologist. That's what finally really helped me. If the one she is seeing isn't helping, get to another neurologist.

"The Keeler Migraine Method" is an excellent book with some great suggestions for models and treatments.

If you have any other questions or she would like someone to talk to, I volunteer!

 

[GlowingInDark]

.....

 

[Recidiva]

My migraines are very similar to this and no where as bad as been discussed above. My neurologist recommended to me that I take Aleave when I feel the onset of a migraine and 2 more in 2 hours with a perscription med if that doesn't work. I have only had to resort to the perscription med once or twice in the last 5 years.

Yeah, it's really specific to each individual. Aleve does nothing for me. Might as well just be taking Pez.

Migraineurs are often drug resistant. For me, some things happen to have opposite effects as intended or exaggerated side effects.

I'm afraid it's just trial and error for most.

 

[desiree_d]

30 yrs +

I've had migraines for over 30 years....I've kept food/sleep/weather/and anything else they could think of diaries to find a pattern. The old standby's like cafergot or ergotimine straight up, fiorinal with codeine and excedrine used to at least take the edge off. I've been to chiropractors, massage and accupunturists. I've seen a neurologist who specializes in headaches. So we tried physical therapy also. None of the new meds work, because my headaches last more than one day. I was able to narrow down a few triggers, sleep & weather patterns and alcohol. A "last ditch" effort can be botox, believe it or not it's not just for cosmetic use anymore. Believe it or not the only headache I've felt recede was a combination at the E/R of a shot of compazine (naseau), torridol (non-narcotic pain killer) and some inflammatory I don't remember.

After having said all that and suffered other serious med issues, my philosophy is the YOU know your body best and only YOU know if something is working, if its not INSIST that the doc listen. If a rebound headache is the trigger usually a steriod will stop it like prednisone. I hope some of this has been helpful, I've got notebooks full of info!

 

[culloden]

I've had migraines for 40 years. Treximet takes care of them, but I was going through my 30 day prescription in 3 weeks. I cut out chocolate, and back on caffeine by about 75%, and now I'm banking Treximet.

Good luck to your SO!

 

[Recidiva]

I only use caffeine for treatment only. I keep a bottle of No-Doz or Excedrin around to help head off headaches in the early stages, and sometimes it works. It won't work if it's well along the way though.

I don't drink it in coffee, tea or soda, because I want to remain sensitive to it.

 

[OnceFuturePoly]

Thank you!

I appreciate your kind words very much!

I wasn't aware Dilaudid was available in oral form. Monday I will try to get some as a stop-gap until the topomax comes up to speed. Cutting out trips to the ER would be wonderful!

We've dropped the cortisone from the cocktail because the PCP warned against that too much is not good. If we're sure a headache is a rebound, I'll ask for an experiment to use dexamethasone first.

We haven't tried ergotimine. When a headache coincides with the neurologist's business hours, I will try to get her in for a shot.

 

[OnceFuturePoly]

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!

 

[Recidiva]

Sounds like you're worried for good reason. I hope they find a cause. "The worst headache of my life" is never a good thing. Best wishes for her healing and if it helps, I know how important it is for a spouse to be supportive.

 

[OnceFuturePoly]

Vitamins?

What are your feelings about vitamins?

Take specific ones? Don't take them? Makes no difference?


Hit the B & C?

A multi-vitamin is sufficient?

Thanks.

 

[Recidiva]

What are your feelings about vitamins?

Take specific ones? Don't take them? Makes no difference?


Hit the B & C?

A multi-vitamin is sufficient?

Thanks.

I take a regular multivitamin. I've tried...just about everything else. Haven't found anything in particular that helped, including magnesium, which is often associated with migraines.

It just got to be an expensive set of trials with no actual benefits.

I find that the migraine diet is also a bad idea to adhere to anybody's idea of what it should be rather than elimination trials. Most foods have no impact on my migraines, but if I get a severe craving for something, I should probably eat that, whether or not it's brussels sprouts or ice cream. I've tried lots of diets and determined they usually exacerbate migraines if something is cut out of my diet completely and I can't satisfy a particular craving.

 

[satindesire]

Is she seeing her chiropractor for regular spinal realignments?

When puberty hit me, I had horrifying migraines once or twice a month. After about a year of this, and various treatments doing nothing to prevent them, I finally caved and went for an alignment. It worked really well to prevent them, and the ones I did get were less intense.

My girl Reci really knows her stuff, so her advice should be well heeded, she's lived this life for a long time.

Take her to the chiropractor if you haven't yet, and get her all popped back into place. Pain is the body's way of telling you that SOMETHING is wrong. Listen to it!

 

[desiree_d]

Cluster Headaches

THis sounds incredibly awful, and I feel terrible for your SO.

I get migraines but not on this level *touch wood*. Mine are related to glare and light changes, and usually happen in clusters. But your poor SO sounds like they've got it much worse. I wish I had some new and helpful advice but I'm sure she's well beyond anything I could advise.

I hope this resolves ASAP for you both.

Just an observation...cluster headaches can be just as painful if not more, but usually don't last as long. When you have one though, the slightest change in light,sound, and smell is horrendous...I hope your "clusters" don't get any worse

 

[desiree_d]

Migraine & Sinuses

I was diagnosed -- off and on -- with "migraine headaches." Experience has shown that the vast majority of my headaches were sinus headaches rather than migraines, although the symptoms were virtually indistinguishable from migraines. One notable difference is that a full-on sinus headache involved the whole head, and even the neck muscles, as well as the more typical migraine pains.

If the doctors haven't had any success in finding a problem when looking for migraine causes, perhaps they're not looking for the right causes? At least in my case, the two types of headache are nearly indistinguishable but an antihistamine or decongestant has far more effect on the pain than a pain=killer. I seldom need to use any painkiller stronger than OTC Excedrin Extra Strength.

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

a sure tell sign of a migraine for me is it is on just one side of my face. The pain starts on the temple of the right side (like someone is drilling out of my head), down in back of my right eye and a shooting pain down to my shoulder blades on the right side.

My sinus head are usually restricted from eye to eye, my sinuses and even my teeth.

And who hasn't gotten a tension headache. The one the feels like you've got an elastic band around your head, neck or even clenched teeth. Also, for us gals who have longer hair and use elastic bands alot, give your hair and head a break their culprits too!

 

[Netkeys]

I suffered migraines for 13 years. I was lucky to not have a migraine one day a month. They where whole head migraines. Multiple CAT scans and they could not find a cause. Imetrex was the only thing that gave relief. Back then it was only available as an injectable.

In the middle of the night which I don't remember but from what I have been told by family, as I was in a two day blackout until I had a shot at the ER, I had what I thought was the mother of all migraines. I woke up the whole house. This was on a Sunday night. By Tuesday afternoon I couldn't take the pain any more and went to the ER. The doctor told me he didn't see anything wrong but was calling in a neurologist. He didn't see anything wrong but was going to admit me for tests. Tens minutes after a CAT scan the neurosurgeon was in my room with a neurosurgeon and told me I should be dead. I had a cerebral aneurysm. After more tests I had a five hour surgery to clip the aneurysm. Two months latter I had a second surgery to clip a second one that had not ruptured yet.

Turns out it was these aneurysms that caused my migraines and after recovering from the surgeries which took about 9 months I have had no more problems.

The point I'm making is don't under estimate the cause. Don't assume it's the same headache all the time as you never know. I was very lucky to have survived. My dad had the same condition and died 15 months before mine ruptured.

Don't think you going to the ER to much as you never know what could happen.

You never know. It took the aneurysm rupturing before they did a cerebral angiogram which is how they found the second aneurysm.

Good luck in finding relief.

Ron

 

[desertslave]

First off, I want very much to assume that she is NOT taking any sort of hormonal medication (birth control pills or IUD with progesterone or HRT). If she is, that could be the culprit right there.

Second, and I KNOW this sounds absolutely nuts, try to induce a brain freeze. Yeah, yeah, I know, really! It's something I read a few years ago, but I haven't had a migraine since I got pregnant with my daughter 24 years ago. Unfortunately, my daughter does get migraines. After I read the silly brain freeze thing, I mentioned it to her. She's now staved off at least a dozen migraines because this seems to work. I suspect that it's because the brain freeze zaps the vagus nerve and causes vasoconstriction (migraine pain is from a rapid cycle of vasoconstriction followed by vasodilation). It needs to be a genuine brain freeze, not just a few sips of cold water. Try several spoons of ice cream, eaten rapidly, or one of the freezy beverages that's popular at lots of fast food places recently. (Like a classic Slurpee.)

I can't promise it will work, but it's worth a try.

 

[BiBunny]

First of all, y'all have my sympathies. My mother has had migraines all her life, and I go through periods where I struggle with them, too.

I don't know if she's already tried this or not, but Mother has Sumavel injectables that she can give herself. They've got several benefits. They work faster than taking the triptans by mouth, for one. The fact that they're not taken orally means that if she's vomiting, it has no effect on the absorption of the medication. And it also means she doesn't have to go to the ER for a shot every time the shit gets real. I think they hurt like a bitch, though, because they're "needle-less." Of course, if the triptans aren't controlling the headaches, that's not helping you any now, but it's something to maybe keep in mind?

Also, the fact that she says it hurts less when she's sitting up than when she's lying down makes me think of Idiopathic Intracranial Hypertension. Any chance y'all have already ruled that out?

 

[SweetErika]

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!

I don't blame you one bit for being worried about the timeline and progression of symptoms. They are very concerning, even just to read.

If it were my SO, I'd be pushing for more specialists and tests just because migraines are correlated with an increased risk of stroke and can be symptomatic of so many other life-threatening conditions.

Don't panic, but use your justifiable concern to find the right people to help your SO immediately.