Shock Therapy?

[Nielk]

Anyone heard of shock treatment for CFS??

I just spoke to my sister-in-law and she said she knows of a woman who was house bound for a year with fatigue and pain all over. I have no idea if she had a diagnosis
of CFS or not. For some reason, she went for shock treatment and now is 100% back to herself.

I tried to google shock therapy for CFS and didn't find anything.
I'm likely to think that maybe she just suffered from drug resistant depression?

I thought I would just throw it out there to see if anyone has any information or experience with this type of treatment.

It sounds pretty extreme but, then again, I am contemplating taking Ampligen or GcMAF and those are not a walk in the park either.

I also know that shock treatment obviously affects the brain but there is a neurological component to CFS.

Thanks,
Niek

 

[Esther12]

I guess it could work as a 'reset' switch for the brain for some CFS cases. I wonder if it has been tested for chronic pain? (edit: yup - seems beneficial for a subsection: http://www.ncbi.nlm.nih.gov/pubmed/11749873) Not something I'd consider though.

I think it's something that's coming back in to fashion after past abuses, with new uses of ECT apparently being better controlled and with less serious side-effects.... but I think that it's still only used in really severe cases , where it's thought that there's not much to lose.

 

[Nielk]

I guess it could work as a 'reset' switch for the brain for some CFS cases. I wonder if it has been tested for chronic pain? (edit: yup - seems beneficial for a subsection: http://www.ncbi.nlm.nih.gov/pubmed/11749873) Not something I'd consider though.

I think it's something that's coming back in to fashion after past abuses, with new uses of ECT apparently being better controlled and with less serious side-effects.... but I think that it's still only used in really severe cases , where it's thought that there's not much to lose.

Thanks Esther for the link.
So, it seems that this type of treatment could help with chronic pain.
Chronic pain and headaches are my biggest problems and at times it is unbearable.

I wonder if anyone here has had any experience with this treatment?

 

[ukxmrv]

I've met long term ME survivors who were committed and given shock treatment (was a support group leader). Overall it appears that memory and functioining were badly affected by this treatment and they were very angry at how they were treated and how traumatic it was. Also remember a family friend who had undergone this for depression. None of them were left better off.

It may pay to talk to this woman before you consider this further or do research. I don't care personally what would cure my ME or how bad it would be to do it - just want to be better. With so many ME people being treated by psych means in the UK I would expect that any actual cures would be well know.

I would be concerned at being suggested something by a third party rather than the actutal person who had the treatment. A year in bed could be anything. The person could have had other treatment. We just don't know the full story here.

 

[Nielk]

I've met long term ME survivors who were committed and given shock treatment (was a support group leader). Overall it appears that memory and functioining were badly affected by this treatment and they were very angry at how they were treated and how traumatic it was. Also remember a family friend who had undergone this for depression. None of them were left better off.

It may pay to talk to this woman before you consider this further or do research. I don't care personally what would cure my ME or how bad it would be to do it - just want to be better. With so many ME people being treated by psych means in the UK I would expect that any actual cures would be well know.

I would be concerned at being suggested something by a third party rather than the actutal person who had the treatment. A year in bed could be anything. The person could have had other treatment. We just don't know the full story here.

You are absolutely right that I know nothing about this woman. It's just hearsay through a third party. I will try to look into it more carefully. My instinct was the same. If it was a viable solution, why did I not hear it mentioned in any of the forums, blogs, CFS doctors, etc..

I also think that in general, friends and family who do not really understand our illness, will often just throw suggestions at us without knowing what they are doing. Perhaps it's because of lack of understanding and the desire to want to help. Sometimes, this will cause more damage than anything.

 

[Wonko]

Of course it could be that being electrocuted is an effetive way of discouraging people from reporting pain. It may even work subconciously.

Honestly, with shrinks it seems to be if they cant understand a problem they try a bit of mutilation and see if that helps - boring holes in peoples heads, electrocution etc.

 

[searcher]

I want to second what other people are saying in this thread- be careful with shock therapy. I met someone recently with fibromyalgia who had shock therapy, and she lost a lot of her memory but didn't lose any of her pain. I completely understand the urge to want to try something to reset the brain, but I think other techniques like intensive meditation are safer ways of trying to reprogram broken circuits. Or if you are up for something more experimental, there are some interesting experiments with low doses of ketamine that show promise.

 

[illsince1977]

I had 3 effective series of it, after which subsequent ECT was of no help at all. Each improved my functionality (energy level) dramatically, but temporarily. Then I always faded until I was back to baseline after a few weeks. It was always done in a hospital very humanely, but boy what a monster headache the next day. I lost some of my short term memories surrounding each treatment series.

 

[Nielk]

I had 3 effective series of it, after which subsequent ECT was of no help at all. Each improved my functionality (energy level) dramatically, but temporarily. Then I always faded until I was back to baseline after a few weeks. It was always done in a hospital very humanely, but boy what a monster headache the next day. I lost some of my short term memories surrounding each treatment series.

I'm so sorry that you had to go through this experience. First to get excited because you had improvement and then having your hopes dashed. I'm sure it wasn't an easy decision to begin with to undergo this treatment!

 

[Wayne]

Rife Instead of Shock Therapy

I had 3 effective series of it, after which subsequent ECT was of no help at all. Each improved my functionality (energy level) dramatically, but temporarily. Then I always faded until I was back to baseline after a few weeks. It was always done in a hospital very humanely, but boy what a monster headache the next day. I lost some of my short term memories surrounding each treatment series.

Hi All,

Interesting experience 1977. Yours and others' experiences/stories are enough for me to not delve into this. It seems like a "major impact" modality, when there's evidence a variety of "minor impact" modalities could be much better if a person were to try to "reset" their brain or neurological system. Somebody mentioned meditation, but there are also things like acupuncture, energy medicine, polarity exercises, homeopathy, alpha-stim (micro-current therapy already approved by the FDA), cranial sacral, neurofeedback, etc.

I've used many of these in the past with a fair amount of success. My most recent experience has been working with a Rife machine, primarily to treat my Lyme bacteria/parasites. I'm encouraged by a variety of results so far, but as far as this thread is concerned, I believe these Rife frequencies are having a significant affect on the harmony in my neurological system. Don't know if this is because Lyme bacteria is dieing off, and/or some other reason.

I have a friend with a relatively mild case of muscular dystrophy, who visits frequently and has been doing some Rife frequencies for that. His results have been pretty remarkable, as far as being able to calm down his brain. He usually stops by in the evenings, but he mentioned last night after getting done with a session that his brain was completely calmed down and alert as if he had just woken up in the morning. And he says he always sleeps better at night and has a better next day after he does a session.

In short, I think it would be good to research any number of other modalities before venturing very far into the world of shock therapy. Based on my own experience and knowledge base, I would guess Rife and/or other therapies offer much more potential for less cost and less risk.

Best Regards, Wayne

 

[illsince1977]

Wayne - I have tried every "minor impact modality" you mention, except micro-current to no effect or to the same effect of temporary improvement followed by relapse or making me worse. What I find interesting is that it worked at all and repeatedly, then failed; That pattern is not unlike many other treatments, be they manipulative (cranial-sacral, acupuncture), medications, energetic, homeopathic and herbal.

Neilk - Back in the early to mid 1980s I was pigeon holed into an atypical depression (because all your tests are fine, so there's nothing wrong with you) diagnosis, and rapid cycling bipolar (because your energy is so up / manic one day and down / depressed the next) diagnosis. Just because a psychiatric treatment, like ECT, or psychiatric medication may have a positive effect on us does not mean depression is the correct diagnosis. There is definitely something severely wrong with my nervous system, but atypical depression or manic depression is not it. Your sister-in-law's friend may simply have had undiagnosed treatment resistant depression, or she may have CFS with severe neurological impacts.


Standards of care in psychiatric medicine probably dictate that anyone go through being classed as having treatment resistant depression before ECT will be administered these days, I'm guessing. I'm not going to put myself through that mill again. I am at the point where I try not to waste my time and energy with non-CFS doctors. However ECT is not the barbaric torture that is portrayed in the popular media. As options go I would never rule it out, nor would I ever embark upon it now without thoroughly researching its documented side effects including any outlying case studies that doctors tend to dismiss.

 

[taniaaust1]

Anyone heard of shock treatment for CFS??

I just spoke to my sister-in-law and she said she knows of a woman who was house bound for a year with fatigue and pain all over. I have no idea if she had a diagnosis
of CFS or not.

Id be wary as just those two symptoms arent CFS and could just be chronic depression.

I've personally spoken or known 4 different people who had shock therapy (all in Adelaide Sth Australia.. i personally think they are going overboard on shock therapy here). (none of them had CFS)

One had it for chronic untreatable depression, one had it wrongly for depression who actually turned out depression was a misdiagnoses, it turned out he had Asperger's and hence the psychs hadnt been understanding him.. Aspergers people tend to get worn out easily and hence can sleep more then normal people (note.. shock treatment isnt used for Aspergers),
One had it for hallunications due to depression and the fourth had it due to Borderline personality disorder (BPD isnt an illness which is meant to be treated by shock treatment).

Out of those four (two certainly had illnesses in which shock treatment shouldnt have been used as it dont even treat those issues).. the shock treatment only helped ONE of them some.. the one who had the hallicinations due to depression (she'd been seeing snow in middle of summer), it didnt fix her depression at all so she still isnt doing anything but did stop the hallicinations. This person still needs others caring for her.

Sadly out of the four.. three of them have had PERMANENT side effect from the shock treatment of MEMORY LOSS, a couple of them have very noticable memory loss due to it (not just memory loss of the shock treatment or just before that but their memory loss of incidents even which happen now are affected). (the only one who isnt now living with memory loss from it is the borderline personality disorder person).

The one with Asperger's, the shock treatment has completely like ruined him.. he used to be very smart and loved to study but now has bad memory probs due to the shock treatment so he feels destroyed, he says he's lost his mind (brain).
......

I personally due to those I know who have had this.. feel like all the shock treatment going on is like a crime. They are brain damaging people. I think they may actually be covering up just how many people are left with permanent memory loss and having trouble functioning for the rest of their lives due to these treatments.
(I had one doctor who wanted to send me to shock treatment.. just cause I was having a bad day and burst into tears while seeing her).

 

[5150]

hi Nielk,

hope this finds you doing well. i wish we all were doing better.

my only experience with "shock" is from the mini-seizures to which i have now devolved. Seizure is defined as "any uncontrolled electrical activity in the brain".

as my brain gets revved during the few hours of intensity of being awake, energy seems to be "stored" and not flowing all the way to completion; it's like a closed circuit is reached within the frontal area. then as i try to drift into sleep, one layer down, the stored electricity that didn't flow through is released in a zapping jolt ... of varying intensities, from mildly unpleasant, all the way to the point that it produces involuntary crying out at the severity of the startling effect, which is most alarming and unpleasant. some episodes produce such a burst of electricity that i feel my heart briefly wavering, and fibrillation goes on afterwards in varying lengths of time. it feels rather dangerous and scarey.

i find that exposure to electronic devices associated with eye strain can bring on this seizure activity with regularity, but also just being generally over-tired and run down, as we are prone to be, can create it.

the reason i'm bringing up this experience into your thread is to say that even the apparently small natural bursts of electricity produced by mini-seizures feel dangerous to me. i do think it's capable of creating heart attack.

that said, i have no idea about the amount of electricity used in shock treatment, but as the natural build up produces the fearful response as it does in me, i don't think i could handle an artificial zap of higher intensity. the thought makes me cringe.

thanks for bringing up this thought provoking topic. it's rather complex.

 

[Nielk]

Thanks Tania for the information you provided. This sounds like such a risky treatment! I am DEFINITELY staying away from this one. It's so easy for someone to recommend treatments just on hearsay because they #1 don't understand really what's wrong with you and #2 they just want you to snap out of it already. (as if I myself don't want that).
I think it was probably a well meaning advice because I know she cares about me but coming from a lot of ignorance as to what this illness really is. I think deep down she thinks I am just very depressed and can't get out of it.

5150:
The symptoms of your "mini seizures" sound scary. Are you treating it with medication? I don't have these seizures but, am taking Klonopin for sleep and pain. Klonopin is technically an anti seizure medication. There are many others on the market. I hope you are tending to it with a doctor.

Thanks to everyone for your advice and all the best,
Nielk

 

[5150]

Nielk,
re: treating my symptom with medication: the "internal doctor" who manages my case in the Veterans Administration hierarchy says she isn't familiar with that symptom,lol. can you believe that? the frustration level rises...

thanks for pointing out re Klonopin. i once had that Rx but changed it to ativan, due to needing the relaxation it provides prior to sleeping. interesting that you reminded about Klonopin as anti-seizure: I find ativan to help reduce the build up of stored electricity too (both are benzodiazapines). if i feel the build up early, 5mg of ambien dissipates it nicely (ambien, a pseudo benzo). Yes, thankfully i have these 2 helpful meds. i got lucky for once.

it's a bit like treating the bigger seizures of epilepsy, i suppose.

 

[Nielk]

Nielk,
re: treating my symptom with medication: the "internal doctor" who manages my case in the Veterans Administration hierarchy says she isn't familiar with that symptom,lol. can you believe that? the frustration level rises...

thanks for pointing out re Klonopin. i once had that Rx but changed it to ativan, due to needing the relaxation it provides prior to sleeping. interesting that you reminded about Klonopin as anti-seizure: I find ativan to help reduce the build up of stored electricity too (both are benzodiazapines). if i feel the build up early, 5mg of ambien dissipates it nicely (ambien, a pseudo benzo). Yes, thankfully i have these 2 helpful meds. i got lucky for once.

it's a bit like treating the bigger seizures of epilepsy, i suppose.

Hi 5150,

It's good that you have some resource to help you when you feel it coming up but, can,t they refer you to a Neurological doctor for examination? I would feel more comfortable knowing that someone who DOES understand what's going on in your brain is caring for you.

My best,
Nielk

 

[Wayne]

Wayne - I have tried every "minor impact modality" you mention, except micro-current to no effect or to the same effect of temporary improvement followed by relapse or making me worse. What I find interesting is that it worked at all and repeatedly, then failed; That pattern is not unlike many other treatments, be they manipulative (cranial-sacral, acupuncture), medications, energetic, homeopathic and herbal.

Hi 1977,

The pattern you describe reminds me of a story a friend with CFS told me a number of years ago. She had the same pattern (I think most of us do), and being in a very close knit church, shared much of her health difficulties with her Church group. Well, after listening to her describe this type of pattern, they determined that she did not have a physical problem, but instead had a "spiritual problem".

I think she made less of an effort to attend church after this. It's bad enough that doctors and/or friends mislabel us with various types of mental disorders, but when our own church turns on us as happened to my friend, it sounds even worse. For some reason, I would prefer to be mislabeled as having a mental/emotional/somatic, etc. problem than a spiritual problem. Makes a person wonder who really has a "spiritual problem".

Best Regards, Wayne

 

[Wayne]

Lithium Orotate - Neuroprotective

Not sure if this necessarily fits on this thread, but thought I'd mention that people with Lyme disease often have very serious "electrical" problems such as has been described on this thread. Many end up taking a mineral supplement "lithium orotate", which apparently has a remarkable ability to protect our brains and neurological systems. Some feel it is the most important supplement they take, and can notice a difference within a couple days if they don't take it.

Wayne

 

[Levi]

ECT

http://www.flimecfsforum.com/forum/index.php?f=4&t=349&p=566&rb_v=viewtopic#p566

 

[taniaaust1]

5150 .. I went throu a stage of the ME in which it was very neurological and used to get like electricty shocks too. One of these was so big one time that I actually got thrown from a sitting position to face down on floor. I also had the spontanous crying out and sound sound effects (I'd have some weird noises come out).

I just wanted to say to you, thou we dont know what causes that in ME that for some of us it does go away. I havent had that happening for a few years now. It seems to be like any other symptom of our illness and may just go away as our symptoms change. (I was never on any medications for it thou I did have it happening for many many months, maybe up to 2 years I had that symptom).

(you may find that stimuli like even the wind hitting your face can set it off or like set off rhymathic violent tic like symptoms eg head being thrown about).

best luck with that
......

sending hugs to illsince

. Sorry it seemed like no one was valuing your experience. I myself thou value the experience of anyone whos ever personally spoken to me about their own experience with ECT. Yes your experience was very valuable coming from the point of one with ME (you are the first person on or off line Ive come across with ME who's tried it), but the experience of others who were harmed by the treatment is valuable too even if they did have other illnesses.

(im wondering if you viewed it as like a personal attack against yourself as we posted some negative things about ECT based on others we know and that is why you are now feeling bad). I'll cut out the trying to analyse as its none of my business but Im really confused why you got upset at the comments made on the thread.
best wishes

thanks for sharing your experience. It was interesting to hear about and I thought your post was valuable.