Insurance companies do not ‘get it’ do they?

If you are silent about your pain, they’ll kill you and say you enjoyed it.(1).png

So I call from my insurance company asking for information they insisted they didn’t need in the first place, because they are that awesome. I should have got it in the first place, knowing who I am dealing with. But they also said my doctors clinic notes do not show sufficient evidence for disability.

And I wonder how that can even be. This is to show I cannot work. So setting aside the depression that caused two suicide attempts… set That aside. Set aside the FM. Then I have the daily intractable migraines that have never responded to any treatment at all ever.

I wonder if they comprehend what intractable means. It means nothing has been able to decrease Frequency or Intensity of my migraines. And I am Daily. As in every single day I go to work with a migraine of the intensity between a 7-9. And I am expected to drive. And I am expected to think and not make errors. To communicate despite aphasia. To remember despite brainfog and pain interfering with short term and long term memory. Hell I am expected to see and hear despite auras that actually make that pretty hard to do. I can take a triptan 2-3 out of those 7 days in a week so impossible to treat every work day, assuming they even worked all the time. Except I can’t even do that because my doctor explicitly told me to take them rarely due to the extreme adverse effects I get. But I do take them anyway when I am working, because I want the hell to be dampened slightly for a few hours and I will deal with breathing problems and chest pains… hell I’d welcome a heart attack. And I am unfortunately serious about that one, due to the whole suicidal ideation factor. I have lost 40 pounds due to nausea and vomiting. I get chest pains all the time because of the triptans, which I ignore.

But mostly, goddamn it all, it is the effing pain. It is the pain I can’t take all the time and work. The pain leads to lack of sleep, and sleep deprivation which makes the pain worse. And leads to waking up with a migraine or status migraines. Which leads to plummeting moods and suicidal ideation. And then more suicidal thoughts. Then suicidal intent and actions. It is a cycle I have repeated over and over and over. I wanted to stop it before it started. I was really struggling and I just wanted to stop it before I did something I couldn’t take back… is that so crazy? I get it, it is in fact crazy. But proactive. And understanding my own state of mind.

These guys have no idea of suffering. No idea how close to the edge we can be because of it. I have no idea what ‘evidence’ they are looking for. 2 chronic pain conditions apparently isn’t sufficient. Depression causing suicide attempts… not sufficient. You know what message that sends to someone who had depression with suicidal ideation? Yeah that message.

So being as that pushed me right into my dark place I have to spend the night on some work my psychologist gave me. Deciding between rational thoughts and distorted thoughts. Like my instance company is a douche bag and their ‘specialist’ aka a nurse, isn’t a specialist in anything… a rational thought. That the only way to ever end this and the pain is to kill myself, no insurance company, no work, no pain. Distorted thought.Well True, but not the Only way… one effing hopes that is. FFS this is an ongoing nightmare of mine. Everyone of my Actual specialists say I cannot work. This is the most idiotic process ever designed. So anyway, I’ll end this point while I go think non-suicidal things and work on my suicidal ideation worksheet.

The Botox

BOTOX for migraine feels a lot like rubbing a porcupine all over your head for funsies..png

So a couple days after my BOTOX and my forehead feels stiff and my eyebrows are stiff as well. This is better than the first time which I got complete numbness over the forehead for the whole duration and could not move my eyebrows a bit. So an improvement I’d say since I still have sensation.

“When the researchers looked at the placebo-controlled trials, they found that Botox was associated with about two fewer headaches a month for people with chronic migraines and those with chronic daily headache. However, the report states that “Botox is no help for people with episodic migraines (fewer than 15 a month) or chronic tension-type headaches.”” Migraine Again

Basically they say a ‘modest’ improvement. And really 2 migraines less a month doesn’t sound astonishingly impressive. But when you consider what we are Dealing with anything is a good thing. So yeah maybe 2 less migraines. But also maybe less intensity, so there is that.

But I generally will not know yet. This is my first round which generally doesn’t show a damn thing. Usually benefits are not seen until the second or third go around.

So it isn’t fun to get, or experience after, for a modest benefit. That is what migraineurs are willing to do for their pain… any damn thing that helps in the least bit.

Got botox? In the brain?

Facial Injection For Women

Well they don’t shoot it into the brain. But it IS supposed to stop the brain pain. Well the brain doesn’t feel pain. But the signals coming out from the brain.

What I am saying here is Botox is one of the two things used to treat chronic migraines, the other being Topamax, which I am also on.

I got botox 7 or 8 years ago. Don’t even remember how long ago it was. But I was not a responder. As in it didn’t work at all. But I also only had it across the forehead, not the full protocol they have now. The protocol now is 31 shots in the locations below:

BOTOX USPI OAB ONLY (Track-changes)_AGN comments

The recommended dilution is 200 Units/4 mL or 100 Units/2 mL, with a final concentration of 5 Units per 0.1 mL (see Table 1). The recommended dose for treating chronic migraine is 155 Units administered intramuscularly using a sterile 30-gauge, 0.5 inch needle as 0.1 mL (5 Units) injections per each site. Injections should be divided across 7 specific head/neck muscle areas as specified in the diagrams and Table 2 below. A one inch needle may be needed in the neck region for patients with thick neck muscles. With the exception of the procerus muscle, which should be injected at one site (midline), all muscles should be injected bilaterally with half the number of injection sites administered to the left, and half to the right side of the head and neck. The recommended re-treatment schedule is every 12 weeks.Drugs.com

 

And it looks painful to have 31 needles jabbed into your head injecting a fluid. But it sounds more painful than it is. The forehead does hurt a little, because of the nerves and thin skin. But once they go around to above the ears and back of the head and to the shoulders… not bad at all. Meh, I’d say. Didn’t mind it t’all. Keep in mind I have no fear of needles in the least bit.

Your forehead though does ache after for some time. Stinging ache from that abuse thrust upon it. And as one might expect it does trigger a migraine, or I was getting on anyway, hard to say.

We shall see how to feels tomorrow after it settles.

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The opiate Epidemic Canada

The suffering of others should never be underestimaed.png

In Canada a lot of people are dying from fentanyl overdose: Hospital stays for opioid overdoses on the rise, warn health researchers They are looking to a lot of different solutions to the problem, including stricter boarder control. But another thing they are doing is of course declaring an opiate epidemic… and making it harder to get opiates… for actual treatment.

Chronic pain patients feeling left out from opioid discussion

Dr. Roman Jovey, an Ontario doctor who specializes in pain management, wrote to the Ontario college in July to express concern that the American dosage guidelines “will harm legitimate patients with chronic pain who might benefit from the careful prescribing of opioids.”

Bremner and his group aren’t saying medication is the only answer. He does regular therapy in a swimming pool and is a major proponent of peer support groups.

But many therapies aren’t covered without benefits, and that’s something Bremner said many chronic pain sufferers don’t have.

The provincial system, meanwhile, has a growing wait list.

In the province’s central health zone, 1,266 patients are on a two-year-long waitlist for pain management services. Elsewhere in the province the wait ranges from three months to two.

Those wait times and the fact a majority of doctors have little training in pain management add further challenges for chronic pain patients. The National

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She acknowledges that some doctors may over-prescribe but she’s accusing the provincial authorities of fear-mongering, making family physicians reluctant to prescribe minimal amounts of painkillers.

“What I am very critical of is unleashing a storm of these investigations, creating this climate of terror,” Mailis said.

She criticizes the government for failing to fund alternative pain-treatment methods such as psychology and rehabilitation, leaving doctors no choice but to prescribe narcotics. The National

Once again we have a situation where they are making doctors afraid to prescribe pain medications to pain patients, but have Nothing in place to help the pain patients. Bravo. So they will have pain and more pain with a heaping of suffering on the side. And like the States it will lead to more suicides, which pain patients said would happen, hell I said would happen. Unmanaged pain is itself a suicide risk factor and doctors ought to know this. No one is keeping track of how many More people are committing suicide of course, because frankly they don’t seem to care.

I heard they were going to start the urine sample thing here in Alberta. So let’s assume pain patients are addicts why don’t we? Make them do urine tests to prove they are not. Of course those tests sometimes show false positives which then could cause them to be taken off medication, but who cares? And really it is embarrassing and disrespectful and time consuming but whatever, right?

In the United States I have heard of people with horrific pain conditions being completely taken of their medication, without being weaned off. I have heard of them being put on much lower doses, that doesn’t manage their pain, so they cannot function and therefore cannot work. I have heard of false positives on these urine tests from simple OTC medications… and having to do secondary tests themselves to Prove their innocence, because of course they are just guilty addicts not pain patients. I have heard of pharmacies refusing to fill prescriptions. Of doctors refusing to treat pain patients at all. Of ER doctors turning patients away or now saying if they want treatment for pain it is ‘drug seeking’ behavior.

So tell me again who suffers from this war on opiates? The drug addicts who will find their fix no matter what you do? Or the pain patients that actually need the treatment? Seems to me the ones that suffer are the Last ones that should be suffering any more. And yet they will, just like in the States, they will suffer.

 

Auditory Hallucinations

“People have reported hearing music, distant conversations, the sound of footsteps and more.”19 less often discussed migraine aura symptoms

Auditory hallucinations (paracusias) can occur with migraine with aura. Most common though in children. One study found the prevalence was high with depression. “We encountered 12 patients (our center = 5, literature = 7), 58% were female, and 75% had typical migraine aura. Hallucinations most commonly featured voices (58%), 75% experienced them during headache, and the duration was most often <1 hour (67%). No patients described visual aura evolving to paracusias. Most patients (50%) had either a current or previous psychiatric disorder, most commonly depression (67%). The course of headache and paracusias were universally congruent, including improvement with headache prophylaxis (58%).PubMed

I have in my life had some bizarre auditory phenomena all of which occurs in twilight sleep. So hypnagogic state sleep phenomena like hearing my name called, hearing people talking in the background, sleep paralysis and all its weird hallucinations. These all test our sense of the real vs not real because we don’t Feel asleep. And a lot of ghost stories I have heard start with I couldn’t move and there was something staring at me… and to me what jumps out was that they had sleep paralysis.

Well what if you have migraines? Well I have what seemed like a great ghost story last night and it was freaky. All I can think is that it was an auditory hallucination. Being I fit the criteria of also having depression I suppose that fits as well, and it was voices I heard.

What happened was I was on the computer writing. Then my computer speakers started going in and out. Click, crackle, click, crackle. Or I assumed it was them since nothing else around to make such a noise. Then in-between the crackles came the sound of two children laughing. I put my face closer to the speaker to see if that is where the sound was in fact coming from but it just stopped. And that was Really Trippy.

Was that a ghost you saw_Or a migraine aura_You'll never know.....png

I do believe in the Possibility of ghosts, but I believe a lot of experiences can be attributed to sleep phenomena. When my brother passed my mother and I received phone calls. My mom got calls saying they were from him with no one on the line. I received calls with no number at all, phone just rang, with no one on the line. For a couple of days. So that sort of thing, I couldn’t explain and it was comforting to be honest.

So yes I believe in the possibility. But I have migraines. And migraines mess with our perception of reality all the time. All the time. For the last three weeks I have been smelling cooking in the house before I have cooked a thing… so olfactory auras can mess with us too. I once looked all over the house for a foul smell one.

So was it a ghost? An aura? Who knows. I can say this. I said ‘If you are here, flicker that light right there’ and pointed to the lamp in the room. And that damn lamp when bzzt and flickered really strongly. Coincidence? I rather hope so.

It was a weird night. And when you look at it from a migraine perspective auditory migraine hallucinations themselves are one of the weird ones anyway. No matter what happened… it was weird.

 

 

 

Migraines and mouth bacteria?

people, emotions, stress and health care concept - unhappy afric

The study that came out about food triggers and mouth bacteria was a pretty fascinating one… to clear it up for us Teri Robert has written Are Migraine Food Triggers and Mouth Bacteria Related? 

The fact is the gut is a fascinating topic and ripe for research. We develop our gut bacteria when we are young… and have it for the rest of our lives. Another fun fact, it is estimated about 90% of our serotonin is made in our digestive system. Chew on that! So it is a largely ignored area that affects a rather massive amount of things. So I actually found this study pretty fascinating, but preliminary and obviously we would have to see where they go with it in the future.

Painsomnia and insomnia

the-migraine-manual

Two triggers are very well known to me because I have fibromyalgia. Sleep deprivation and oversleeping. Both are horrible triggers. Both are predictable triggers. The main issue with fibromyalgia is that it comes with full blown insomnia and sleep dysfunction as part of the game plan, so getting sleep and restorative sleep is, well, near impossible. This is a migraine trigger. Then, well, if you are like me years of chronic migraines and FM leads to depression which causes over-sleeping and This is a migraine trigger. It seems lose one way and lose the other way. Lose and then also lose.

Continue reading “Painsomnia and insomnia”

Do #migraines make it hard to #think during an #attack?

Brainless Blogger

This study needed to be done. Am I dumber that dirt during a migraine attack? Or we can phrase that as; am I cognitively compromised. Whatever. We need to know. Because it feels like the IQ was sucked right out of my ears.

Researchers in Brazil and Portugal took 39 people with episodic migraines to study if their thinking was impacted by a untreated migraine attack. That isn’t to say treating the migraine would be different, when in fact it can actually enhance the problem, it is just that it creates more variables they would have had to consider.

The resulting findings were that, yes, indeed, we have trouble thinking during migraines and this is actually significant enough to measure. Awesome.

The study concluded “Cognitive performance decreases during migraine attacks, especially in reading and processing speed, verbal memory and learning, supporting patients’ subjective complaints. These findings suggest the existence of…

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Allodynia

no-touchy

So you hair hurts. A breeze gently caresses you and you scream. Your clothing seems to rip the flesh from your body when you move. Yeah, it is Allodynia: A painful response to a generally non-painful stimulus. Today I suffer from it on my scalp, forehead and legs. So no touchy. It is actually extremely painful in my legs. Feels like my clothing is scraping across exposed nerves and every time I sit, well, it is very unpleasant. As is walking.  I am of course wearing non-confining clothing. For migrainuers it is most often seen in the scalp, face and neck. But I have FM as well and can and do get it anywhere. Once it starts it tends to spread, but on the scalp it is pretty continuous. This is a pain that can be mild to severe. From a sunburn to a torturous nerve pain. It can be bouts or continuous.

So what is going on with this skin pain and migraines? It is related to central sensitization in the brain. This is the central nervous system becoming sensitized to persistent stimulation. It is actually, according to my neurologist, the cause of my chronic migraines. It is basically the brain having a idea of pain and making that pain travel faster and easier in the brain. Pain memory if you will. Pain begets pain. And when this occurs for a bit allodynia can be the result. The pain signals are just traveling on a super slick speedway designed by that pain memory.

And “Cutaneous allodynia is a risk factor for migraine chronification and may warrant preventive treatment strategies.”Brain

Here is a study on depression and allodynia: The study concludes that “allodynia, in addition to high migraine attack frequency, as a new migraine-specific factor associated with depression.” Also “Pathophysiologically, the triad migraine, depression and allodynia may suggest a self-reinforcing dysfunction of central nervous system (CNS) structures involved in the modulation of neuronal excitability and pain.”

Article I wrote on Fibromyalgia related allodynia: Allodynia and Fibromyalgia