Juss
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Posts posted by Juss
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I have been hit every day since the onset in 2014, believe it was March. It does not matter. If not cluster or cluster-like, migraine, or paroxysmal. And, my C5-C7 was an ACDF Reconstruction with an implant. The rest of the discs in the neck are beginning to show myopathy (spinal cord compression) and radiculopathy is established.
This means I am well overdue to have the rest of the discs removed, and ACDF. Most likely with implants. Artificial discs are junk money rackets. The best neurosurgeons will bluntly tell you that. A few of the best spinal reconstructionists are in my area (Thank God). Most of my L Spine needs to be finished as well.
Anyway, despite the above, my muscles become stiff as a board before any headache. Like, popping 2 Soma (Carisoprodol) (tried several times) won't phase it tight. So yeah, it appears common. My muscles are abnormal, alarmingly tight because of my movement disorder. When you place that into context and the fact that I notice it, that should tell you something.
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Confederate Railroad
“We Sang Three Verses of Dixie” man, I miss them days of the misses, barefoot, not getting personal, often butterball butt naked, cooking in the kitchen singing her ass off to this
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It helps. I can't remember the steps and I have had numerous training attempts. I mean multiple. I would recommend it with whatever your favorite relaxing music is.
For some, it is those damn annoying wind chimes and shit.
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Don't mind the shakes, severe tremors, and all, sadly that is a mild day for me. I have a great day when it does not look as if I am stroking out or having a Grand Mal Seizure. Anyways, this should show the feature.
https://photos.app.goo.gl/CNKePWpKGb5cy94N8
You will need to click the play arrow on the top right.
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The relaxation mode assists with deep breathing. While taking a deep breath for 5 seconds, the watch records pulse and oxygen saturation. Then, the watch flashes “exhale,” and you do this for a few seconds; all while recording the same things (pulse and oxygen). You can monitor your pulse, and often see it drop, while deep breathing. I will see if I can get a video. Technology is not a thing for me. I still recall Betamax.
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I recommend the iTouch wearables, iTouch Air 3. It has a relaxation feature and it has all of the features that the $350 smartwatches have. My ex misses gave me mine for Christmas. I do realize that most won't be caught dead with such, because it is not an Apple Brand or Samsung, even Fitbit. That is your waste of money, not mine.
The relaxation mode should help you to to avoid all of the costs associated with Headspace, and you can monitor your heart rate, record oxygen saturation, and all of those ridiculous things. I would spend $50 on the watch that is compatible with all phones, over an app that costs that much each year.
This is the only forum that I know of that won't allow images in normal size. I will see if Google Photo works.
https://photos.app.goo.gl/oehpe4fvkY6nq7MJ8
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Here, this is the easiest thing. I've listened to this religiously since having a record player, then a clear/color Memorex cassette tape and a Boombox. Anyways, this helps the most.
I bet most forgot about this great one. This reminds me of my father in his reader with his pipe (God I miss the smell of pipe tobacco), my father was the true definition of The 70s/80s intellectual, the HiFi stereo loud, and my mom rolling dumplings. Hell, most likely we had a console TV. The cable was pointless-10 channels.
Walk of Life
While it has nothing to do with happiness, explicitly, anyone over 38 gets it. This song always makes me happy and brings back a lot of memories. This may be an East Coast, Mid-Atlantic, and my NJ connection? It helps me a ton.
Oh, FYI, I take a backpack whenever I must head out. It has headphones with an adapter, a good book, wigging out pills, flipping shit pills, Pain Pills, Headache Abort Narcotics, and my medical records should I need to go to hospital. Try music therapy or book therapy.
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The Feeling Good Handbook
Feeling Good The New Mood Therapy
You are beyond normal, save yourself thousands, and perform Bibliotherapy, which is CBT by yourself. Dr. David Burns wrote the two best self-help books ever, all experts agree. That should save you $30. It helped my crazy ass. The Feeling Good book is clinically proven to be better at treating depression than any antidepressant.
This just came to me, it is not uncommon to think about the difficulties that you mention. I am a straight shooter and not good at smoothing things over, but I have found that it never goes away. My headaches come and go now. They are not episodic or truly chronic; however, they come around enough to tell me who is boss.
I think you are handling it best by asking mature, responsible adults that live normal lives. That stated you have to filter the madness, or it will eat you up inside. I have not met one person with any severe illness that has reversed course, exemption Max Gerson type Cancer. Outside of that extreme, your problem is here and it will let you know.
This is what I ain't good at. You can't bottle it, but you can't hide from it either. I hope someone that has a background with the head doctor department can help. The noise in my head began in 1995, it never turned off. I'm afraid since that fateful day it has all been a matter of survival.
In your case perhaps you can talk to friends, family and let them share responsibilities? I'm sorry, but if you dump all of your problems on one person, the outcome is always a disaster. I hope the best for you.
I feel that it gets easier with time. For some, they are lucky and deal with just one issue. It is when the shit stack keeps piling, that it becomes an issue.
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First, you need to understand what cognitive distortion is. This is a decent, not great, intro. Inappropriate, the newest forms of therapy are all “talk therapy,” which is a waste of money and not proven to be efficacious. Of all the alphabet soup therapies, CBT is proven numerous times. I highly recommend psychoanalytically based therapies-that is subjective.
https://positivepsychology.com/cognitive-distortions/
Cognitive Restructuring helps to change the distortion, the taxing thought that you have, and turn it into an appropriate thought. For more information that appropriately reflects the explanation use Startpage or the search engine of preference for more information.
https://optionscounseling.com/wp-content/uploads/2014/06/4StepsCognitiveRestructuring.pdf
https://nbcgutah.com/wp-content/uploads/2017/09/Thinking.challenge.pdf
Cognitive Dissonance is important and reflects upon the worksheet included above.
https://www.simplypsychology.org/cognitive-dissonance.html
A Daily Dysfunction Log helps to end procrastination and eradicate negative thoughts
I believe that page 180 (of the book) has the record
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I will research what normal people do. I have many of the great clinical guides. There are a few things that I can think of: Cognitive Restructuring Log, Daily Dysfunction Log. I believe that I still have the online information: I know how to do these by memory, but that won't help you.
I don't use street drugs, not anymore, majority of the time I had scripts-not relevant.
Truly, they want you to deal and process with the emotion. That is great if you can do that. Most of us can't, if faced with any type of crippling pain. I will look for these. It will help you a lot more.
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Here, just listen to this (with good drugs if necessary) whenever you are wigging out. I used to love this before surfing. If there is one thing that I miss it was surfing. Chauncey’s Surf Shop sponsored me until I moved for that damn ex.
This always lifts my spirits-lots of history perhaps. This was played heavily in its day.
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I would think about how I ruined my life, destroyed everything that I worked for, all of the chronic pain, and the headaches incessantly if I let it. The easy thing to do is what I do, let the doctors drug your ass until you are emotionally numb and you sleep most of the day and night.
It beats having more multi-level fusions for spinal cord compression and disc compression that the neurosurgeon has me sign off on. And it beats all of the pain from neurodegeneration. Headaches, right, and no offense. They wonder how I can walk. It is because I am too damn stubborn.
And you know, as long as the legal drugs keep coming, it is always easier. I guess that breathing stuff helps if your life has been mild, but I need drugs. I ain't lying, just being honest. When shit gets to the killing myself thoughts 24-7, it's a cocktail of Haldol Injections, Lorazepam, Propanol, even Thorazine: add Dilaudid and Fentanyl. I get analgesics, my body is shot, that part could be difficult for you.
In your case, just suppress it until you learn to disassociate: don't let the shrinks bullshit you when you get good at it, you can feel like you are looking at your body for hours on end (from the outside).
The solution is to block it. Always think of something else. When that fails, turn to legal drugs, just don't get hooked. I can think of great cocktails. If it gets intense, I am sorry, I just sleep as much as possible. I get up to fix supper and clean the house for my roommates. Then, I get cleaned up, and back to bed. It sounds terrible, but it works.
Again, block it out, or, take heavy hitters to help block it out. Oh, to reanswer your question, most are sent to the funny farm if they think of suicide, it is normal for me to start thinking about that by 5:00 PM until bed. And, the headaches, pain, and suffering, that is why the 12 gauge is gone. That would end up a catastrophe. As long as there are no guns, I am fine, FYI. Pills don't work, tried 15 times, 2 shock trauma, 10 ICU, 7 Hemodialysis, 2 Comas, 1 TBI, 60ECT, Shock Therapy. I think that I am best qualified.
Besides, if you are married, have friends, and life, that is not a good road to go down. Think about them. I realize that you are a lady, and I ain't being funny or forward, this applies to everyone, make love, smoke some grass, and listen to Bob Marley, Ziggy Marley, or Steel Pulse. Snort a Line, I dunno.
Fuck, man sex, drugs, and southern rock. Just don't let the man get ya, or get hooked. Live life or something. Don’t let this shit drag you down. Unless chronic, live it up. Party when not getting nailed. Go do your favorite things. Enjoy good cooking, cook or something. I would hope that you only experience this when dealing with the bullshit. If not, although easy to say, just ignore it.
Focus on the moment. What I would not do to be out in a NorEaster, snowing its ass off, 32 degrees out, dropping in on a 15-foot crank, banging on the lip, high off my ass on uppers. Fuck man, blow, speed, and big surf. Shit man. Then all of us at a party Sublime, “Badfish,” talking about how it got any bigger we would have been towed in.
Or, on a more serious note, my ex-wife, the homemaker, barefoot in the kitchen cooking. It was a simple thing for me. Money never made me happy, and at one time, trust me, I made plenty, a lot.
Enjoy life, you don't know when you are facing paralysis, no friends, homelessness, not enough money to get by, and reclusiveness (not by choice). As you can see, we did drugs (never got hooked), to increase the dopamine rush, now it is to escape the bullshit.
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I am just as concerned about oxidative stress. Tailoring the Batch Protocol, I still had numerous complications and symptoms. That stated, for most, you can owe your life to Batch. For example, Now Foods 5,000IU D3 and MK7 with a weekly 50,000 IU (Now Foods) keeps I dialed in.
Respectfully, Calcium appears overkill. Most of us have far too much Calcium (Osteoarthritis, Bone Spurs, Numerous Spine Issues) come from over calcification, thus, I take 3,000mg of MSM (advised).
If you are not sure, though exceptionally difficult, find a doctor that knows what in the hell they are doing. There are methods to determine most vitamins and minerals that you lack: otherwise, you are pissing in the wind. Your skin and hair tell-all, as well. Most of that information is available and reliable.
I never use anything, but reputable vitamins to my preference. And, I stay loaded on an all 72 multi-mineral. Then, an additional multivitamin. And, I take additional minerals from hair analysis. There are at least 15 nutraceuticals not worth listing as well. It appears as if everyone has an opinion, just like under britches. Lifeextensions, Now Foods, sometimes Garden of Life, though exceptionally difficult to discern Jarrow Formulas, even Source Naturals.
In my circumstance, I had to dig substantially deeper-still am. I also have neurodegenerative conditions, which scream an overload of neurotoxins and oxidative stress.
Good luck. Out of respect to Batch, the group, a lack of a lab, and far fewer science courses, I don't share anything that I am learning.
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You are welcome and good luck with the trial. I had zero luck with any of the CGRPs that were available on the CMS formulary. Coincidentally all were the worst, or useless, Ajovy and Amovig (to lazy to research generic name for listing ).
From there, I found other options, much cheaper medications that worked. The side effects take a lot to adjust to, but you can adapt. Fortunately, if I did not have insurance, the most that these drugs would cost is $47, according to my advantage plan.
I do hope that it works, but I can’t afford anything more than $3 per month. I look for the oldies but goodies. Or, supplements.
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I forgot to mention that I am off-label with Naltrexone and at what most consider a very high dose, 100mg. If you knew my history, you would understand why. My results, nonetheless, are impressive. To be fair it could be Sodium Polypharmacy. I believe that the “wigging out cocktail” helps as well.
Edit: someone sent a message saying that I should never talk about certain drugs like I’m telling you to take them, blasé blasé. Anyways to appease a non board member I removed it. Look, you don’t have to take me literally.
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ETC, Smoky Mountain Memories (I prefer this to Mel Street)
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Skip to page 394 if you would like, here is a clinical neurology textbook on Sleep Disorders.
Sleep Disorders and Neurological Diseases
I skimmed this NIH paper, Classification of Sleep Disorders, and it may help
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480567/pdf/13311_2012_Article_145.pdfI hate giving bad advice, and I try to avoid speculation. The psychological comes first hand. I know some that take SSRIs such as fluoxetine and sertraline. That is an extremely, fundamentally dangerous, slippery slope. Especially since trauma and nightmares go hand-in-hand.
New Insights in post-traumatic headache with cluster headache phenotype: a cohort study (British Medical Journal, BMJ 2020)
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That could be a reaction to the hell that you are going through. Please don’t take that as medical advice. I often wonder if any of these damn doctors, even the Ph.D. and PsyD are researching the trauma caused by CH. I could look into that I suppose. Anyways, again, with something like this, don't take my opinion as fact, but if it is not disturbing then I suppose you can roll with it. Or, you can always explore EMDR.
Neuroendocrine Associations Underlying the Persistent Therapeutic Effects of Classic Serotonergic Psychedelics
https://www.frontiersin.org/articles/10.3389/fphar.2018.00177/full
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I'm afraid that this is getting off the topic/question pertinent to whomever this forum user asked in regards. That stated when the specific situation by which you speak occurs, it is unfortunately because someone called SSA and they initiated an investigation or some other inauspicious reason warranted the process. To my knowledge, the harassment does not begin until they have a motive. Unfortunately, it generally is a false one.
The other reason could be during your CDR, which goes back to my point, pay attention to how you live your life.
In my final closing on this thread, you can receive disability benefits for Cluster Headaches, if chronic. The same applies to chronic migraines. Having multiple comorbidities helps to increase the likelihood of a favorable decision, but the days of those comorbidities expediting the decision are long gone.
Good luck to all.
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I am surprised that no one discusses LDN, Low Dose Naltrexone. I have used Naltrexone for a few years for complex pain and impulse control, the results are impressive. I do not require APAP (Tylenol): nor do I know of a doctor that would recommend that you take it. Here is a journal from 2021. I am not a doctor but avoid acetaminophen, which is well beyond overkill. All that Tylenol does is destroy the gut wall and liver.
https://www.medrxiv.org/content/medrxiv/early/2021/04/01/2021.03.23.21254186.full.pdf
Naltrexone is an opioid blocker available since 1984. Liver failure is exceptionally rare, far more common in the atypical olanzapine, which is almost guaranteed. Naltrexone toxicity occurred, of course, in those with shot livers (drunks and junkies). What do you expect?
I do not understand the sleep disturbance. My sleep score averages 88, which is good. I have panic disorder. Naltrexone does not foment anxiety. If it makes you tired, please inform me. And, Naltrexone aids in reducing all forms of headaches. You can use synthetic analgesics: I can take up to six, 50mg Tramadol per day, with Carisoprodol.
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This 16-page journal will answer all of your questions on CGRP, and Emgality. From Brain Sciences: Calcitonin Gene-Related Peptide (CGRP) and Cluster Headache Published January 6, 2020
https://mdpi-res.com/d_attachment/brainsci/brainsci-10-00030/article_deploy/brainsci-10-00030-v2.pdf
I go with what I know, 100mg of Toprimate (proven superior in migraine suffers to CGRP), and if shit gets real I push 200mg. I tried all of the CGRP’s but Emgality-the fat, bald, and deleterious side effects, no thanks.
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I keep the DL for my ex and the title to the car-it is complicated. Old marital issues, a matter of formality. Concerning defining, I would not say such. I hold the DL, in a glimmer of hope that I halt the progression, adapt, and dare I say recover. I can rent a luxury SUV for $60 thru Lyft per day, or a nice/clean compact for $40 per day. If I do not make progress within a few years, I will assess and make the determination.
And, I am not able-bodied. My doctors are flabbergasted that I do not use an ambulatory aid. I refuse to use a cane, which I did use from 2010 until 2016. A cane is a royal PIA. As are those walkers with the wheels. I used both. Instead, I did an unhealthy, piss-poor adaptation, with an abnormal gait. Hey, it works for now. They say that I walk like Frankenstein. And I have severe kyphosis despite a massive correction by fusion/reconstruction. Hell no to the knife again.
Self-defeatist, possibly? At this point, getting out of bed, cooking/cleaning, and self-care, each day is a major accomplishment. Thank God for the depression and SI being over with. I used to never be satisfied when money was not a concern: I always wanted more. Hedonism and Materialism. Now in poverty, I manage and in some regards, am happier. Not suffering for a few hours makes me smile. The ability to read for a few hours places a huge smile on my face. It becomes the little things.
I don't consider SSA bad actors. Oh boy, that stirs the pot. They just have too many trying to get into a system that has no funding. And, they are selective for reasons that most need to think about. The subjective cases are always difficult: the objective cases are always easier. I tell them that I hand roll my dumplings, and make yardbird and dumplings, but I also tell them that it lasts for a week, and I am in excruciating pain for at least two days. I am. My muscles are tight, and my lower back locks mid-position. I cannot get upright.
Tell the truth. That helps. Tell them what you do. Then, how it impacts you. Yeah, I cook shrimp and grits, split pea and dumplings, chicken and dumplings, and sweet potato biscuits, but I pay dearly for it. And the same applies to that scrapple and eggs that I have for breakfast, every morning.
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I have a driver's license, but I am in a state of cognitive decline-not anywhere near as bad as the ice-cream licker-and my doctors advised me not to drive. Even when high functioning, I chose not to drive. I cannot live with the idea that if I wreck and kill someone, it is my fault. FYI, I can make the ice cream remark, he had a Freudian Slip and confessed to a three-month hospitalization in 1988 for a brain aneurysm.
Plus, I always have narcotics and heavy hitters in my system. While legal, it is my civic duty not to dry. Again, my doctors advise me not to drive. Just use Lyft.
When I said to hide, I meant to hide from SSA. They do pay attention to what you do. And if you think about it, and respectfully, if you are out and about all the time, are you disabled? I only leave the house for doctors. Everything is delivered to me. The majority of the time, I am flat on my ass, in crippling pain.
While SSA should redefine its constructs, I do not see it occurring. That is unfortunate, but reality. They are bankrupt, and every day, more attorneys quit disability practice. I do not know of any disability practice that assists with SSI, and now, most disability attorneys only take guaranteed SSDI claims. Good luck: it is brutal.
I advise everyone to invest in catastrophic insurance, think Aflac, and private disability insurance, think MassMutual. Had I done that, I would be in a much better financial situation. If you think that Social Security is solvent and here for 20+ years, wow. I am petrified, and desperately attempting to relearn futures, options, and swaps.
A friendly suggestion, do not rely on your government. Get the proper insurance, pay now or pay later. Medicare is atrocious as well. As if our socialized medicine is any better, thanks to ACA.
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3 hours ago, Bejeeber said:
@Juss, are you going with the NOW brand of NADH? Any thoughts on it and your NAC vs the NAD3/NAD+ craze?
I'm known to procure and consume HPN brand NAD3 from the Bezos empire, but it was kind of a roll the dice crapshoot when choosing between it and the Niagen NAD+ (and whether those forms are what they are marketing-cracked-up-to-be).
I'd like to drop several more ultra-annoying acronyms here for all to enjoy right now, but have to run, will check back later.
At this point, I use what NAC is available. Generally speaking, this is the Life Extensions NAC, which is $10 for a monthly supply. Concerning the NAD, I purchase the Now Foods NADH for $24, a 2-month supply-that is what is available by Vitacost. Frankly, I am not qualified to make an informed opinion on the discernable differences between NAD, NADH, and NAD3. I do realize the differences in the formulaic compound, but they do not appear justifiable in price differences.
I am most concerned about the entire holistic approach, not attacking one problem. My concern when I see brilliant marketing is whether or not it is horse shit? Think Ultra Omega 3 on TV, which has barely any EPA or DHA, the main ingredients to reduce the inflammatory markers. And DHA is of utmost importance for cognitive improvements.
I could go on for hours: I am learning myself. Nutrition and nonpharmaceutical approaches are--dare I say--still in the backwaters and dark ages. Thank God that all of my doctors know a fair amount about nutrition, and in comparison to most doctors, it is profound.
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my experience with Emgality
in General Board
Posted
Here is “An Overview of New Biologics for Migraine Prophylaxis” from the journal US Pharmacist
https://www.uspharmacist.com/article/an-overview-of-new-biologics-for-migraine-prophylaxis
I don't post abstracts. Bluntly, you can click on said link. I found it, and have access to it.