Another treatment FAILED

[KuriGohan&Kamehameha]

Today I tried a new drug that was recommended on some forums for people suffering from Chronic Fatigue Syndrome. It is a stimulant that is supposed to act instantly. I paid a lot of money to order this medicine off the net, as the No Help Service (NHS) doesn't prescribe it.

I felt okay for about 20 minutes, a slight boost of motivation and a tiny burst of energy, yet that goddamn fog smothering my mind and my cognition is still there. It won't go away. I didn't want to take a higher dose because I heard it can be uncomfortable until your body adjusts to the drug. I still can't concentrate, I have no awareness, my processing power continues to be limited, and I simply cannot THINK the way I used to before I became ill.

My intelligence was one of the few things about my existence I valued. As a child I was hyperlexic and seen as someone who was gifted, talented, and going places simply because I loved to learn and absorb new knowledge like a sponge.

What is the point of life if I am going to have to watch my body and mind continue to decline? I am only 21 so I know it will get worse with age.

I want to be able to excel in my degree but I can't when my brain is betraying what I tell it to do. My memory is shot. I feel like a puppet with no master. How can you study Neuroscience when you have no brain cells?

This disease has taken everything from me and I wish to die and end this constant suffering of wondering what could have been if I had not won the Darwin Awards with my shitty genes.

 

[Miss_Takes]

I can but imagine ... my heart is with your suffering.

 

[Spitfire]

I am wondering if you have tried acupuncture for chronic fatigue? It may sound kind of stupid, I know.

It is just that somebody I knew claimed acupuncture helped her a whole lot and talked about using it for chronic fatigue and she was one of those people I would trust with my life.

 

[NodusTollens]

Today I tried a new drug that was recommended on some forums for people suffering from Chronic Fatigue Syndrome. It is a stimulant that is supposed to act instantly. I paid a lot of money to order this medicine off the net, as the No Help Service (NHS) doesn't prescribe it.

I felt okay for about 20 minutes, a slight boost of motivation and a tiny burst of energy, yet that goddamn fog smothering my mind and my cognition is still there. It won't go away. I didn't want to take a higher dose because I heard it can be uncomfortable until your body adjusts to the drug. I still can't concentrate, I have no awareness, my processing power continues to be limited, and I simply cannot THINK the way I used to before I became ill.

My intelligence was one of the few things about my existence I valued. As a child I was hyperlexic and seen as someone who was gifted, talented, and going places simply because I loved to learn and absorb new knowledge like a sponge.

What is the point of life if I am going to have to watch my body and mind continue to decline? I am only 21 so I know it will get worse with age.

I want to be able to excel in my degree but I can't when my brain is betraying what I tell it to do. My memory is shot. I feel like a puppet with no master. How can you study Neuroscience when you have no brain cells?

This disease has taken everything from me and I wish to die and end this constant suffering of wondering what could have been if I had not won the Darwin Awards with my shitty genes.

Sorry the drug & the system aren't helping you OP. It's F'in annoying that they won't prescribe a drug that can help you feel more like yourself. I also hope the side effects aren't permanent, & that you can regain your ability to think clearly.

Did they say why? I'm genuinely curious about why they would turn down some who is in obvious need of help.

 

[WornOutLife]

What is the point of life if I am going to have to watch my body and mind continue to decline? I am only 21 so I know it will get worse with age.

Oh dear, I'm so sorry to hear this. I think there's no point in life. I wish I could do something to make you feel better.
Anyway, sooner or later we will find peace and stop suffering.

Send you lots of hugs from Argentina <3

 

[KuriGohan&Kamehameha]

I am wondering if you have tried acupuncture for chronic fatigue? It may sound kind of stupid, I know.

It is just that somebody I knew claimed acupuncture helped her a whole lot and talked about using it for chronic fatigue and she was one of those people I would trust with my life.

It is expensive to get it done in my area, but i have known of some other people with chronic pain who say it relaxes them. I think acupuncture is similar to a deep tissue massage in how it is supposed to work. Due to trauma, I think I would just be anxious letting a stranger touch my naked body rather than relaxed

Sorry the drug & the system aren't helping you OP. It's F'in annoying that they won't prescribe a drug that can help you feel more like yourself. I also hope the side effects aren't permanent, & that you can regain your ability to think clearly.

Did they say why? I'm genuinely curious about why they would turn down some who is in obvious need of help.

The thing about the NHS is they are bound by NICE guidelines which means anything experimental (as well as many off-label treatments) will not get prescribed. They also have guidelines about only prescribing X drug for X condition because the NICE guidelines are more like low level assembly language instructions rather than a high level object oriented script, there's no extrapolation or outside the box thinking.

I have access to all the NHS documents about their protocols for helping people with chronic fatigue syndrome and its extremely barebones, all they can offer is SSRIs, therapy, and in rare cases pain medicine that I can already buy over the counter. I'm not even registered with a doctor because I know they will try to force me into cognitive behavioral therapy and other harmful things. If you ask for a specific treatment here they won't do it, you're expected to pay for a private service if you want any semblance of choice.

It's all about saving money (because there is not enough funding for the NHS) and protecting the staff from liability. A lot of people in the UK treat the NHS like a religion and tell you to shut up and trust the "professional experts". Would not recommend.

Sadly this is what I experience everyday, I thought the medication would get rid of that brain fog but it seems like it made no difference in these awful symptoms :(

 

[Seul]

They also have guidelines about only prescribing X drug for X condition because the NICE guidelines are more like low level assembly language instructions rather than a high level object oriented script, there's no extrapolation or outside the box thinking.

10/10 coding reference, loved this.

cognitive behavioral therapy and other harmful things.

What's harmful about them?

It's all about saving money (because there is not enough funding for the NHS) and protecting the staff from liability. A lot of people in the UK treat the NHS like a religion and tell you to shut up and trust the "professional experts". Would not recommend.

Absolutely agree with this but I wish it could be true. Like I wish we could just go in blindly and trust them to do the things that will perfectly help us. It sucks that you have to look for your own meds to make you feel better

 

[ceelestial]

It is expensive to get it done in my area, but i have known of some other people with chronic pain who say it relaxes them. I think acupuncture is similar to a deep tissue massage in how it is supposed to work. Due to trauma, I think I would just be anxious letting a stranger touch my naked body rather than relaxed

The thing about the NHS is they are bound by NICE guidelines which means anything experimental (as well as many off-label treatments) will not get prescribed. They also have guidelines about only prescribing X drug for X condition because the NICE guidelines are more like low level assembly language instructions rather than a high level object oriented script, there's no extrapolation or outside the box thinking.

I have access to all the NHS documents about their protocols for helping people with chronic fatigue syndrome and its extremely barebones, all they can offer is SSRIs, therapy, and in rare cases pain medicine that I can already buy over the counter. I'm not even registered with a doctor because I know they will try to force me into cognitive behavioral therapy and other harmful things. If you ask for a specific treatment here they won't do it, you're expected to pay for a private service if you want any semblance of choice.

It's all about saving money (because there is not enough funding for the NHS) and protecting the staff from liability. A lot of people in the UK treat the NHS like a religion and tell you to shut up and trust the "professional experts". Would not recommend.

Sadly this is what I experience everyday, I thought the medication would get rid of that brain fog but it seems like it made no difference in these awful symptoms :(

Same sentiment but i prefer to call it the national heroin service "we wait until youre actually dying then get the morphine out", it's complete shit, i had to spend 8k last year privately to get anything done... it really isn't about funding tbh it's about money being shitted away on the endless fatties with type 2 who abuse the system and do nothing to help themselves, same with alkies and other self inflicted illness, us sick ppl end up stuck behind them and also the culture of he/she who cries loudest gets most literally encouraging victim culture.

 

[Angst Filled Fuck Up]

Right there with you. Also suffering from crippling fatigue and this "baby dementia" as I call it. Can't concentrate, can't remember things, always spaced out and losing track of everything. Can't problem solve. Feel dizzy, drunk and dissociated 24/7.

Now it has progressed to muscle twitching and spasms, weak/limp/rubbery feelings in my limbs. Also feels like a massive physical weight on my body at times. What a nightmare.

 

[KuriGohan&Kamehameha]

10/10 coding reference, loved this.

What's harmful about them?

Absolutely agree with this but I wish it could be true. Like I wish we could just go in blindly and trust them to do the things that will perfectly help us. It sucks that you have to look for your own meds to make you feel better

CBT and GET (graded exercise therapy) were all the NHS offered until recently, as the guidelines changed with their reluctant admittance that the exercise therapy actually made our condition worse, but doctors refused to believe it for so many years.

CBT to me always felt like a scam, becsuse everytime I did it, I was told that all of my thoughts were cognitive distortions and I had to correct my "negative patterns of thinking" because they weren't true according to the therapists. They'd try to convince you that you're delusional- when the pain I experience everyday is as real as it gets. Yet those charlatans still tell people with chronic pain to go to cognitive behavioral therapy, as if it can somehow help the physical pain.

Instead of trying to research new treatments that actually work they want to pretend like it's all in your head and that you need to think positive, meditate, diet and exercise. Which like I mentioned, I can't think clearly anymore, how am I supposed to think positive when my mind is failing?? It is pseudoscience and criminal how they treat people in pain.

 

[Ghost2211]

Sorry to hear it didn't work. I have CFS as well. It's truly awful, and makes even the simplest task hard.

 

[Gnip]

The one energy booster I've gotten prescribed for myself this millennium that worked was modafinil, off label for my AD/HD in 2006, the first year Medicare D was implemented in the United States, but starting in 2007, it was only covered for treating narcolepsy, sleep apnea where a CPAP machine was already being used in compliance with how it was prescribed, or to offset the enervating effects of chemotherapy. That's how I got my diagnosis of sleep apnea, but then the CPAP machine failed me miserably, only giving me severe bronchitis after over a year and a half of nightly use.

While modafinil boosted my energy as a central nervous system stimulant, it did NOT work for me as a focusing agent for my AD/HD. (I evaluate AD/HD medications by how well they help me concentrate on heavy reading and finishing other tasks after I begin them.)

I still have a huge stockpile of modafinil, but if I take one 400 mg tablet (or even half of one), then I won't sleep for about two weeks. As a CFS drug, modafinil might be phenomenal. (I prefer improved quality of sleep through zolpidem.)

 

[KuriGohan&Kamehameha]

The one energy booster I've gotten prescribed for myself this millennium that worked was modafinil, off label for my AD/HD in 2006, the first year Medicare D was implemented in the United States, but starting in 2007, it was only covered for treating narcolepsy, sleep apnea where a CPAP machine was already being used in compliance with how it was prescribed, or to offset the enervating effects of chemotherapy. That's how I got my diagnosis of sleep apnea, but then the CPAP machine failed me miserably, only giving me severe bronchitis after over a year and a half of nightly use.

While modafinil boosted my energy as a central nervous system stimulant, it did NOT work for me as a focusing agent for my AD/HD. (I evaluate AD/HD medications by how well they help me concentrate on heavy reading and finishing other tasks after I begin them.)

I still have a huge stockpile of modafinil, but if I take one 400 mg tablet (or even half of one), then I won't sleep for about two weeks. As a CFS drug, modafinil might be phenomenal. (I prefer improved quality of sleep through zolpidem.)

Great to hear that it helped you, I may try bumping up the dosage and seeing if that works. The drug I was trying was in fact modafinil.

 

[ceelestial]

Right there with you. Also suffering from crippling fatigue and this "baby dementia" as I call it. Can't concentrate, can't remember things, always spaced out and losing track of everything. Can't problem solve. Feel dizzy, drunk and dissociated 24/7.

Now it has progressed to muscle twitching and spasms, weak/limp/rubbery feelings in my limbs. Also feels like a massive physical weight on my body at times. What a nightmare.

what you describe here sounds 100% like severe stress/anxiety symptoms.

 

[wait.what]

I tried modafinil as an off-label treatment for depression some years ago. It worked like magic for about 2-3 days, then another few days of lessening effect, then nothing. Bitterly disappointing, considering how I had to move heaven and earth to try it, even though I actually do have obstructive sleep apnea, which is one of the things it was FDA approved for.

 

[Gnip]

Great to hear that it helped you, I may try bumping up the dosage and seeing if that works. The drug I was trying was in fact modafinil.

I actually had an inkling modafinil might have been the medication involved in your situation. Back when I tried it, I was aware that it was being administered in doses up to 800 mg, and modafinil had supplanted amphetamines as the United States military's stimulant of choice for members of their service (which at least partly accounts for why such high prices were associated with it).

We are all an experiment of one. In my individual case, modafinil infused me with so much energy that I had to dispel that energy by going on five mile walks up steep hills after waking up. I was setting my alarm for 4:00 AM with bottles of water and modafinil at my bedside table, then dosing myself as soon as the alarm went off, then headed out for my walk/jog. (These days I cannot do that because I have plantar fasciitis.) By walking/jogging five miles starting at 4:00 AM, I could start yawning at 8;00 PM. (But if I waited until 4:30 AM to take my modafinil, I could find myself not sleeping at all through the following night, even with a five mile morning jog. That's how sensitive my body was in 2006.)

I tried modafinil as an off-label treatment for depression some years ago. It worked like magic for about 2-3 days, then another few days of lessening effect, then nothing. Bitterly disappointing, considering how I had to move heaven and earth to try it, even though I actually do have obstructive sleep apnea, which is one of the things it was FDA approved for.

Now in my case, modafinil did nothing to alleviate my depression, nor did the regular early morning exercise regimen the energizing effects of modafinil induced me to undertake have any depression alleviating benefits.

As in your case, I had to move heaven and earth to get back on modafinil for sleep apnea, first torturing myself with CQUACK equipment, since Medicare D would not cover modafinil unless I could prove CQUACK compliance first, but my body was no longer allowing me to exercise as I needed to in the mornings for being able to sleep at night. (My second attempts with modafinil were in 2014, eight years after I first tried it.)

Physical exercise is a scam, but my trials with modafinil taught me that energetic people who exercise and stick with it are energetic to begin with and use exercise to dispel that surplus energy. People with low energy who are misguided into attempting to boost their low energy with physical exercise will only drain their already low energy resources even further. Physical exercise is a panacea for NOTHING! This is why the fitness boom of the 1970's and 1980's fell so miserably flat.

Fitness entrepreneurs made a fortune while criminally overselling the benefits of exercise, then began dropping dead like flies or crippling themselves prematurely, proving they were role models for NOBODY! Many of these deceased losers were medical doctors like cardiologist/runner George V. Sheehan. If you want an honest and valid authority on fitness who is also a medical doctor, you can have the sane guy who coined the term Aerobics in 1968, Ken Cooper, who remains active at age 89 with a Greek moderate and rational exercise regimen, someone who has never jogged more than three miles in a day. (Cooper has outlived his father by around a dozen years now, demonstrating the Greeks were right about moderation in all things.)

Exercise pioneer Jack LaLanne only lived to be 96 because his older brother lived to be 97, and their mother lived to be 102. LaLanne's former friend Jay "The Juiceman" Kordich only lived to be 93 because his mother lived to be 103, and his father lived to be 104. These energetic old men were merely trading on their genetics, but actually shortened their lives with their exercise and fitness routines. (LaLanne contracted pneumonia in the last week of his life, then stupidly tried to exercise his way through it, even working out the day before his death, so exercise directly killed him. If you develop pneumonia, seek medical treatment!)


So summing up, I experienced modafinil to be exactly what it is supposed to be, a somatic central nervous system stimulant counteracting the enervating effects of chronic sleep deprivation, not as a psychiatric antidepressant, and not as a focusing agent for addressing my distractibility. I found it to be an outstanding medication within specific limitations, provided the dose was sufficient. I did not experience improved results at doses above 400 mg. For me, the optimal doses are the optimal doses, and sometimes whatever the optimal doses of particular medications are can change considerably for me. Once again, for me to use modafinil today, I would need my body to have a way of discharging the energy that modafinil induces, and I can't do that as necessary with the severity of my plantar fasciitis (or bone spurs in my back and neck, with degenerative disk disease).