The local ER experience

who-says-migraine-is-the-8th-most-disabling-disease-in-the-world

On a local site they were complaining about the hospital and most of the complaints were invalid. Mine was not, but that is a side note. The one real complaint I have I didn’t mention because people wouldn’t get it. Because they have no idea how serious migraines can be.

I never go to the ER for a migraine unless it is a status migraine. An acute migraine that has lasted more than three days. Often I go on day 5. And I stopped even doing this long ago.

Here is what the treatment generally is:

Approximately 40% of all migraine attacks do not respond to a given triptan or any other substance. If all else fails, an intractable migraine attack (status migrainosus), that is, an attack lasting longer than 72 hours, should be addressed in an urgent care or emergency department. In rare cases, patients may need to be hospitalized for a short period and may need to be treated with intravenous valproate or dihydroergotamine (intravenously/subcutaneously/intramuscularly) for a few days Medscape

Here is a typical guideline

Or this treatment

The last time I went recently the doctor said we don’t see you often here for migraines and I said no and didn’t explain. But there are reasons. He treated me with morphine because I cannot take toradol anymore. By the way, the One doctor who Didn’t give me the stink eye because I can no longer take NSAIDs by the way. The nurse hooking me up for hydration literally said to me ‘we hydrate because sometimes a migraine can be caused by not enough fluids’. I wanted to tell her it just might… might… be the vomiting, lack of eating, and diarrhea that is to blame after five days of migraine straight. Maybe. Maybe that is why they do that. Just a thought.

Anyway, when I used to go for a status migraine I know for a fact they had no idea what a status migraine was. They always treated with toradol and nothing else. Sometimes with something for nausea, but not always. Sometimes hydrate you, but not always. And they didn’t particularly care if it didn’t work, which it just didn’t. So I stopped going because migraines are low on the list so it is always hours and hours in a very migraine adverse environment, for a treatment that does not work, to leave with a migraine anyway. No real point to it.

Then one day I had a status migraine to which I pushed through like always. Sick. Sleep deprived. On day five I woke up with a numb hand. Permanently numb and over time it spread over that hand. Until the whole hand was numb and had a sharp prickle sensation on it. Turns out it was nerve damage. One neuro says from the status migraine. Another says from a stroke in my sleep caused by the status migraine, causing the nerve damage. Either way, nerve damage. But would it have mattered? No. I would have went to the ER, gotten toradol after a 6 hour wait and left with the migraine and still had the nerve damage. Because they didn’t abort it. Because they don’t know how or care to know how. Or care that I leave that way. It is just a migraine after all. They just need the bed.

So that doctor wonders why I do not go? It never helps. I know I should. Stroke risk. Apparently nerve damage. Heart attack risk. Coma. Death. All higher risks when a migraine like that persists. But I gave up on them. People tell me, I should go to a different ER. Way out of my way and maybe, just maybe the treatment will be better. But to the people who say not to complain about that ER? Don’t even go there. I had one doctor ask Me if one of my symptoms was a migraine aura. Me. If he didn’t even know that, then I can guarantee you he didn’t know what a status migraine was. He gave me two Percocet’s. For a status migraine. Yeah, that did not work oddly enough. Because I knew that wouldn’t work I took one, drove home, and took the other praying for sleep. It failed.

The doctor who gave me morphine, and hydration and a boat-ton of anti nausea meds, well it sort of handled my nausea and it knocked the pain down to a 4… which by the way is so very low that I was one happy camper when I left. I consider him ranked one of the best damn doctors I have ever seen there. At least he had some good bedside manners and didn’t treat me horribly just because I can’t tolerate toradol.┬áRight up there with the fellow who actually did know what a status migraine was and gave me DHE.

So I don’t go to the ER here for status migraines. When I am working, I get them quite frequently and they are a serious problem. But, I do nothing but suffer with them, because there is nothing to do with them apparently but that.

Poem: Going Status

The poem is about going into a status migraine. Which is an acute migraine that last longer than three days… can last weeks. Pain level is very intense. I wrote it because I am in it.

Status migrainelocked me in paincrowded me out of my brain

Going Status

Status migraine
locked me in pain,
crowded me out of my brain,
frantically trying to stay sane.

Yet, yet it remains,
Impossible to sustain,
I must take the pain and constrain,
This, status migraine, my relentless bane

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The 9

The pain crowded me out of my head. No room for anything else.

It was a 9

I would say a 10 but I reserve that for the worst pain I have ever experienced.

This was just a smidgen below that.

What do you even do when a migraine is beyond acute?

When a triptan fails?

When you know there is just no point in going to the ER. Besides that, what a horrible experience it is anyway. Not to even get treatment in the end of the horrible experience. No thank you.

But now two days of horrific pain and I wonder what do you do? I often wonder this when I get to that high 9. That frantic edge of pain. That I wish i could cry, but that would make it worse. That I wish I could distract myself, but my brain is too crowded with pain.

I have to work tomorrow. I can’t miss another day. I am not sure I can function with this pain. I dearly hope I manage to get rid of it tonight. I am so dizzy with it. I mean that literally, I am quite dizzy with it. So out of focus as well, maybe because of the dizzy spells. Or just the pain levels. And the damn ringing in my ears is driving me to distraction.

I often talk about function through the pain. Wearing a facade and stoically getting through the day. That is 7 and 8ers. When you breach that pain threshold of tolerable to intolerable, from bearable to unbearable, from half-functional to non-functional… that is different. Thar is what people never get. How you can be ‘functional’ one day and not the next. Fact is we fake it real well. The pain is difficult to tolerate, best case scenario, but we do it, because we must. We must, we must. That is life. Worst case scenario, and it goes beyond our capacity to pretend to function with.

It is when I fight my moods the most as well. My mood suffers when I have to fight this intolerable pain, with no capacity to distract myself, often sleep deprived. It was why I was diagnosed with depression related to chronic pain. High pain, depressed. It in fact, used to plummet like a rock into a deep, dark, dangerous depression. However, now I am on Abilify which prevents the severe crashes. But still with high pain, high suffering, and my mood drops. I am just a big ball of pain wondering why I have to exist like this. Why i will have to work like this tomorrow. And will feel guilty if I cannot.

Makes you wonder about the 10? Well, it is mindless. Right now I am frantic in pain. With a 10 I am desperate. Incoherent. Cannot move an inch without increasing the pain exponentially. Lost to it. Only a specific migraine gets me into that state and it only happens once in a while. I can’t even describe it the pain is so intense. Only that movement is agony.

Status migraines, acute migraines lasting more than three days, are also 9s. Generally high 9s. But 9s. You are supposed to go to the ER for them because they increase risk factors and can be dangerous… and they are horrifically painful because without treatment they can last weeks, months… just going and going and going. You can get dehydrated and sleep deprived. You blood pressure can spike dangerously. I still refuse to go, even if this beast goes status. The hospital here, has no idea what I mean when I say that. I often wanted to tell them to Google it. They never aborted it. (Well once by happen-chance I had a good doctor and could at the time take DHE and that aborted one) Never properly treated it. But the bad taste left in my mouth after poor care for migraines, and other things, had me refusing to go there for anything. I ended up with nerve damage from a status migraine… but really, I would have anyway, since I would have left the ER with the status migraine. So if you have a good ER, you should go. They are in fact dangerous. No one should have to suffer that pain for weeks on end. Case in pain, status migraines caused my suicide attempts. They torment you, the pain of it.

Yes, indeed, the 9… not able to be endured long at All. Two days and I am exhausted by it. I really can’t do a third.

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