Another disability iritation - quackery

The BBQ Pit
1

I debated whether this should in the Pit and I really don’t know. I’ll try it here.

I’ve been living with daily migraines for several years now. I have tried a lot of things. Different thread.

I had a conversation about a suggestion recently that is really, really bothering me. I think because it encapsulates a lot of what I run into with this whole stupid mess. Ignorance about “cures”. Willingness to push woo. Some lingering societal idea that invisible disabilities are “in our head” and we can overcome them by “willpower”.

Part 1: It was suggested, by a doctor, that I see a hypnotist to seek treatment for my migraines.

Migraines are a physical phenomena. One of the characteristics is something called a spreading cortical depression characterized by things like:
-The spreading of a self-propagating wave of cellular depolarization in the cerebral cortex.
-The spreading of a wave of ischemia passing through an area of cortex.
-The spreading of a wave of vasoconstriction following vasodilation and prolonged sustained vasoconstriction of contiguous cortical arterioles.

Here is a handy wiki cite, if you like.

You might find similar brain effects in epilepsy patients, which may be one reason why some migraine patients can be treated with some epilepsy drugs. When your brain gets involved like this, it causes physical effects all over your body, which I’d be glad to bore you with another time.

The point is that it’s in my head literally, not figuratively. I have MRIs of my head while having a migraine. I have MRIs showing permanent changes to my brain due to my migraines, white matter lesions, scars, blah, blah, blah. It’s a physical reality, which I can show to medical professionals and other relevant parties.

So this dr says, “try hypnosis”. Bye, doc. I never went back. My reaction was, I hope, the same that someone with epilepsy or cancer or heart disease would be. Maybe, if I were suggestible, hypnosis could help me get to sleep, or resist doughnuts, but it’s not going to change the structure of my physical disease. It won’t cure me.

I talked it over with my husband, who for the love of OG has a PhD and is NOT a twit, and he said “Well, you might as well try it.” On the logic that the drowning may as well clutch at straws I suppose. :confused:

I am done with the quackery. I am done with hypnosis. I tried acupuncture. It worked for your cousin twice removed. It didn’t do shit for me. I am done with the latest vitamins from the Alps. Unless that sh*t is in a peer reviewed paper, I don’t want it near me. Don’t tell me how ice packs always work for you. Don’t tell me about meditation at sunrise. The fucking chiropractor at the ER last time - no. Just no. Why the hell are you even at the ER, charlatan?

Well, crap, to make this a proper Pit thread, the topic is quackery and the “curing” of disease. A pox on all woo. Feel free to share your own tales of woo and woe.

2

I have Costochondritis (though I’ve not had an attack for years). When it was first diagnosed my doctor suggested that I take up knitting to take my mind off of it. :confused:

Same doctor said “Some people have a trick knee, you just have a trick heart”.

3

Extreme blood pressure is absolutely real, measurable effect that can be ameliorated by just saying the magic phrase, “calm down.”

So even if migraine can be shown to be physically real (i.e. not imagined or phantom pain), it doesn’t necessarily need a physical/chemical fix. Interrupting the cause at a different level does seem to help a lot of sufferers.

4

Have any doctors actually prescribed meds for you? You mentioned drugs for epilepsy, but I’m guessing you’re not on those. Seems like your doc would refer you to a specialist if their treatments aren’t getting anywhere.

I don’t see why any doctor would suggest hypnosis, unless they thought you were experiencing some mental issue and that you’d be open to it. Even then, GPs have limited training in that field, and would consider a psychiatrist to have much better credentials than a hypnotist. Psychiatrists concentrate more on the physical and biological side of mental defects.

5

This is incorrect.

It might, in many cases, be ameliorated by the afflicted person actually calming themselves down, but the simple utterance of the words “calm down” does not, by itself, effect a solution to the problem.

6

I’d say that very often it has the opposite effect.
My brother Ed’s wife is a GP. She gave her toddlers so many vitamins and preventive antibiotics (that’s not supposed to be done, damnit!) and preventive this and preventive that, I wasn’t sure if she thought she was raising children, calves or mutant E. Coli.

'cept the vitamins were homeopatic. Pity the antibiotics weren’t.

7

There’s been a couple of articles recently by cancer patients who say one of the oddly morale-draining things that happens is all the people who “helpfully” suggest quack cancer cures to them and how that really, really, really does not help them deal.

Recently a person tried defending this behavior on a comment after skeptics guide to the universe posted one of the articles on Facebook. It was so bad they featured it on their “name that logical fallacy” portion of the show. I think it hit double-digit fallacies.

8

On your behalf, allow me to say, what a bastard.

I was hoping this was a whoosh, but I guess not. I can’t imagine that telling someone is who is stressed out about blood pressure to calm down actually lowers their blood pressure.

I do not know these migraine sufferers who miraculously get better by being distracted. If it happens, I am happy for them. I am guessing that this is not true for those of us who fall into the chronic bucket.

Og yes, meds for years. Many meds. On waiting list now for medical trials, so possibly all the meds. Medical devices, including STIMs and Magnetic Resonance. Botox. Cry-ablation of different nerves in different places in my head. Really - it’s a long list. I have a team of multiple neurologists, currently led out of Stanford. I am always looking for the next treatment. My goal is bringing a list of ideas and treatments into every meeting. I am always on the lookout for new teams too. If I meet someone who has beaten chronic migraines, I latch on like an octopus and discreetly grill them about their doctors and locations and treatments. If I have to fly across the country or around the world, by Grabthor’s Hammer, it will happen.

Agreed.

Yes, I think mostly I was venting on this notion. I need to do better. Keep the rant to entertainment ratio higher. I want to get healthy. If you’ve read about some new treatment at the Mayo Clinic, tell me. I’ll get the medical articles and look it up. If your aunt swears by lavender oil under her nose, I will scream (quietly, cause loud noises are bad, mmmkay) and may not talk to you again for a while.

I really, really try to take things in the spirit they are intended, but holy shit, does no one have a brain?

9

You get a lot of these crap “cures” offered by people if you have arthritis, too. Vinegar and honey drinks, eating or drinking all kinds of tonics, all kinds of herbal remedies. What really irritates me is that you have to pretend to like the suggestion and promise you’ll do it as soon as you get home, otherwise the person offering you the Holy Grail Cure acts like you’ve admitted that, no, you really enjoy pain. Even if you tactfully tell them you tried it before (because these things are offered to you by every new Tom, Dick and Harry you’re introduced to) and it didn’t work, they act like you just did it wrong or something. Try it again, you’ll see, it works!

10

My father-in-law was sitting at the bar this one night, when suddenly he grabs his chest and starts grimacing in pain. He say, “Oh, Goddammit! I think I’m having a heart attack! Give me a little Budweiser!”

:smiley:

11

Did it work? (Did he get the beer?)

12

If you work hard enough, you can overcome your migraines. Well, I assume that’s the case, sort of like spinal cord injuries. :wink:

13

Yes, yes. That’s a good one. Just suck it up and do it. It’s just a headache. Mind over matter, right?

14

Migraines suck.

Sometimes woo works for things. Not often, but definitely sometimes.

It looks like you have more than done the “usual” accepted migraine treatment.

The doctor is just trying to help, he isn’t saying “It’s all in your head”. He isn’t making any judgments about you at all. He is just looking for the thing you haven’t tried yet.
It is similar to saying “I give up. Try this. It won’t hurt, and it has a small chance of helping.”

I feel for you, migraines truly suck.

15

Your SIL is a GP and using homeopathic vitamins? Shame on her and her medical school.

16

Mine weren’t daily or chronic, but I got rid of migraines completely by taking Nardil and following the MAOI diet faithfully back in the 90s. My doctor was at what is now Beth Israel Deaconess.

I had side effects that I can’t remember very well right now, so I stopped taking it, but I’ll never forget how great it felt to be rid of them. I really hope you find that.

17

I too suffer from daily migraines. I’m in the midst of a particularly nasty 5-day (as of now) migraine now. I have been treated at a highly-regarded head pain and neurological institute for the past 9 years and im on a prophylactic treatment that generally keeps the migraines at bay. I say ‘generally’ because I still do get migraines, they are just much less frequent. This preventative therapy consists of three daily meds, prescribed off-label: a tricyclic antidepressant, a beta-blocker and an anti-seizure med.

I don’t know if this is old-hat to you or not. I just understand very well how absolutely debilitating migraines can be and I feel compelled to share some things that have helped me. It’s no silver bullet but it allows me to function.

18

Your mental attitude toward pain can make a difference in your ability to effectively “live your life” with pain rather than just living with pain.

Idk what your Dr was on about specifically, but various psychological types of interventions can be appropriate treatments for persistent pain.

Maybe the Doc didn’t think that you were imagining the pain.
Maybe the doc just thought that some hypnotism could provide some help.
Afaik, the list of physical side effects from hypnotherapy is not long—it’s not a high-risk intervention.
If it helps, you’re better off. If it doesn’t help, you’re hardly the worse for wear.

Low risk interventions in a situation were there’re few or no effective options are often worth at least suggesting.

19

Ambivalid - I think I’m on a combo pretty close to what you’re doing, but I’ll pm you and maybe we can compare notes. I’m definitely curious about the exact drugs.

To anyone who is seriously suggesting that I consider hypnotism because what can it hurt - would you suggest it to an epilepsy patient? Someone with blocked arteries? Cancer?

When I have migraines, I have severe headaches. I describe them as someone hammering a railroad spike through my eye straight to the back of my head without stopping. I also have tingling and numbness on my head, face and down my arm. I have symptoms in my gastrointestinal tract, including nausea and other GI issues. I have visual issues. I have memory problems. I have trouble with light and sound. I have speech problems. I have tinnitus that is so severe that I cannot hear normally. I have urinary tract issues too, yes, related to the migraines. I don’t sleep well, because, hey, everything hurts. There’s more about the effect all of this has on my life, but I’m sure you can extrapolate. I carry 4 sets of ear plugs. I wear tinted contacts. I carry multiple sets of progressively darker glasses on top of that. Moving my head makes everything worse.

I have migraines every day. Some days are less than hell. A lot of them are not. Weeks at a time most of them are not.

If my attitude towards a medical professional who gives me advice I consider unprofessional seems to be less than upbeat, tough titties. If I get irked with friends, family and random strangers who do the same, well, I try to be more understanding about it. So far my venting has stayed here and with my family.

I’m going to note that telling me I need to have a better attitude about pain does not make me have a better attitude about pain. I’m putting that one on the list with telling folks to calm down. Not a good idea.

It is my personal opinion that telling me to get hypnosis is about the same level of medical care as the doctor who told my autistic son that he would pray for us, rather than helping me find him appropriate medical care. I found my son appropriate care and I will keep looking for appropriate care for myself. But I need a medical team who does their research too. Who actually understands enough about neurology and migraines to have a conversation with me. Who understands that migraines are not tension headaches or even how to diagnose them in the first place.

20

Here is how I see it. First of all, you have a chronic disease. On the one hand, it causes real and measurable symptoms and affects your life significantly. On the other hand, it is not (usually) progressive or fatal. So-in asking whether I would recommend it in the above cases, I would say possibly, with the following caveats:

For an epileptic patient who has tried maximal medications but still has seizures when she gets stressed-possibly. I certainly wouldn’t stop her medication and would continue to work to prevent the seizures entirely, but if hypnosis could lower her stress level so that she had fewer seizures while we worked on the medication, then it is not harmful.

For somebody with blocked arteries-well I did rotations at the NIH in the cardiac unit where we cared for patients who had failed multiple bypasses and maximum medication. These were patients whose arteries were so blocked that the minimal amount of exertion or stress brought on chest pain. They were there for experiemnted transmyocardial revascularization; in short, their prognosis was so bad that the only way to get blood to the heart was to drill multiple holes through the wall itself so the blood could essentially ooze in directly from the heart itself (newsflash-doesn’t really work). Anything that helped these patients to control their anxiety which increased their heartrates and could cause angina was a benefit. If hypnosis could help, we would try it.

For a cancer patient-if they had terminal inoperable cancer and pain medications were not helping them then trying hypnosis to control pain might be an option along with other palliative measures.

In short, there are times when the best medical management has failed, or maximal medical management is not enough and this is the time to consider alternative therapies as long as you continue with maximal conventional therapy and as long as there is not a risk of harm from the therapy.

If your doctor suggested hypnosis instead of other therapies, then I agree with you. If what he said was that you had already failed all conventional therapies and adding hypnosis might help in dealing with the chronic pain while you looked for a more permanent solution, then I don’t see why that is so bad.