High-frequency rTMS for the Treatment of Chronic Fatigue Syndrome: A Case Series

[Sbag]

Initially I cant find a lot on the spanish treatment but did get this - apply a field of electromagnetic waves of low intensity through a "cap" with electrodes that is placed on the head.
If this is the treatment reffered to it is not the same as rtms as there are no electrodes involved.

 

[Sbag]

Something else that would be useful to know would be which part of the brain is best to target. The area I had done was because of one hypothesis but I have seen somewhere deacriptions of other areas that might be better. I cant remember where I saw these and looking at some of the neuroimaging reports/papers I don't understand them enough to know what they are suggesting. The rtms team are very open to ideas and I would like to send them anything relevant but don't have the brain capacity to search the literature. I used to be a science PhD student but now I can only absorb the less complicated texts. So if anyone can send me links or point me to useful info I'd really appreciate it. The team are trying to get another 10 patients to treat so it would be great to support them with any relevant research.

 

[Anne]

Things like “transcraneal magnetic stimulation” have been used for years in Spain experimentally and in poor legal conditions. And many (MANY) patients have reported worsening of the condition (FM and CFS/ME) and even developement of new diseases (MCS, EHS,…) even some patients associations had to go into warning against it.

@NexusOwl, is there a statement from one or some of the Spanish patient organisations warning about TMS or similar techniques? It would be a great help. Gracias!

Also tagging @Johannawj and @mango FYI

 

[perovyscus]

If you really want this done, go to Thailand. My total cost was about $3000 including travel. There is not a strong as a psych lobby in the United States compared the United Kingdom in terms of CFS, so I do not feel victimized by the establishment.

I received 40 sessions of rTMS theta burst. It was not helpful for my fatigue or motivation.

I would not compare it to ECT as it has improved working memory function in healthy volunteers, and moreso in depressed patients.

I would recommend it for PTSD, as it just completely erased the impact of some bad experiences I had. I still remember them but they do not make me shudder as they once did.

 

[yurybx]

@Sbag, after a year, how do you feel now? Are you doing rTMS sessions again? Did you do low or high frequency rTMS? I am interested, because after many years of unsuccessful searches for treatment, I decided to try rTMS: I went to a mental hospital and received a referral to a rTMS course. As it turned out, this is a low frequency (1 Hz) rTMC course. But on the Internet, they write that a low frequency is used for depressions (the effect of inhibition), and a high frequency for CFS (effect of activation). Should I insist on being switched to high frequency rTMS?
And a question for everyone: Has anyone achieved a positive change as a result of rTMS?

 

[Jackb23]

@Sbag, after a year, how do you feel now? Are you doing rTMS sessions again? Did you do low or high frequency rTMS? I am interested, because after many years of unsuccessful searches for treatment, I decided to try rTMS: I went to a mental hospital and received a referral to a rTMS course. As it turned out, this is a low frequency (1 Hz) rTMC course. But on the Internet, they write that a low frequency is used for depressions (the effect of inhibition), and a high frequency for CFS (effect of activation). Should I insist on being switched to high frequency rTMS?
And a question for everyone: Has anyone achieved a positive change as a result of rTMS?

I did both high frequency rTMS to my left DLPFC and then both high frequency L DLPFC and low frequency to my R DLPFC. I’m sure I’m a unique case, but for me it’s resulted in an almost 2-3 year disaster as the effects linger. It left me with cervical myclonus, parathesia all over my face, and an inability to tolerate any of the antidepressants that I had previously been on for many years. That’s just me though.
If you are pondering whether or not to spend all of that money I would say consider the fact that rTMS failed to be approved at first due to its lack of efficacy. Several years and several studies later, they found some evidence that it might help some. If it were me I would save the money. Ketamine infusions can be found for much cheaper. A ketamine like drug, Esketamine, will most likely be approved for use in the next 6 months. It is being fast tracked and has completed multiple phase 3 trials. As for off label treatments there are probably several that you could try that won’t drain a bank account. Mirapex or pramipexole is a Parkinson’s drug that they have found to be of use in extremely hard to treat cases.

There are many tricks I have found useful over the years. I have struggled a ton with depression and have dedicated most of school time to study it. However, my overall knowledge is just a smattering.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5143506/
Mirapex study


https://psychnews.psychiatryonline.org/doi/full/10.1176/appi.pn.2018.pp9a1
One of many esketamine articles

 

[yurybx]

@Jackb23, thanks for the answer!
The problem is that I am not sure that depression is the right diagnosis for me. Yes, on the one hand, judging by the psychological questionnaire, I have a moderate depression. But on the other hand, my main problem is lack of initiative and unwillingness to do anything at all. I mean, I do not suffer from suicidal thoughts or unrest because of anything and do not wake up in the morning ahead of time. Instead, I'm in a state of apathy, anhedonia and a constant desire to lie on the sofa, eat and watch TV shows. I do not want to go anywhere, to communicate with anyone (although I force myself to go to work with part-time work). I also feel constant fatigue (physical and mental) and endless digestive problems. Sometimes it seems to me that I have an autism spectrum disorder.
As for drugs, most of them have a sedative effect for me, which only aggravates my problems. Even low frequency rTMS, which I am doing now, has a sedative effect. I can’t get rid of the feeling of constant sedation, whatever I do!
I read about ketamine that it is used for depression and chronic pain. But is it useful in chronic fatigue syndrome? How do you feel the effect of ketamine on yourself? Have you taken pramipexol? What are the sensations? What helps you personally increase motivational tone?

 

[yurybx]

I finally decided to try rTMS and did some sessions. The first part consisted of 5 sessions of low-frequency stimulation (1 Hz) of the right DLPFC and did not lead to any positive shifts for me: even though I felt some improvement in concentration, the fatigue did not diminish and there was even a slight sedation effect. I think this method may be suitable for people with anxiety, but not for me.
The second part consisted of 4 sessions of high-frequency (10 Hz) stimulation of the left DLPFC and this time I felt an improvement: I received a certain surge of strength, the ability to enjoy music, humor and gymnastic exercises, I began to feel more confident. This is a good antidepressant effect with stimulation.
This is a very good experience, but unfortunately my digestive system deteriorated a little as a result of rTMS, and this is one of my big problems. I think this is somehow related to the work of the autonomic nervous system, which reacted negatively to the stimulation of the prefrontal cortex. Based on this, I believe that this method is suitable for people with CFS and depression who have no problems with digestion. As for me, I have to interrupt the course of rTMS until I find a way to improve the functioning of the digestive system.

 

[Jackb23]

So it looks like esketamine was just fully approved by the FDA and is now cleared for use. The questions will be who is eligible to have insurance cover it? It is currently approved for treatment resistant depression, but in the future it will likely also be indicated for suicidal ideation. If you are eligible for rTMS, which is a last resort treatment measure, then the chances that you are approved for Esketamine are likely very good. I am not sure how much it will cost, but insurance companies may soon prefer esketamine since rTMS is $10,000+.

While esketamine is just one of the enantiomers of the drug ketamine and may not provide the same Effects as ketamine itself, my experience with Ketamine has been somewhat of a godsend. I had more energy after completeling ketamine infusions than any other time since becoming ill. It wasn’t a “cure,” however, and I could tell it had really just thrown my body off. The increased energy being a beneficial byproduct of this. Insomnia was a thing I dealt with for the next 4-5 months. My body was operating at such a level that doctors were flummoxed when I saw them. I was on a 2 clonazepam, 12.5 mg ambien, and 7 Benadryl a night diet. When this didn’t work it was suggested by my sleep Dr to engage in “skip days.” This consists of sleeping 5-6/7 nights a week. On the “skip days,” I was to not get in my bed for the whole night and then try to go to bed at a normal time the next day. I did these for 8 weeks straight and they didn’t really hold any effect for me. After 4-5 months comes “the crash.” This is where I better be ready to sleep 2/3 of everyday for a few weeks while my body slowly morphs back into its normal shape. I am currently in the “crash.” I have engaged in 3 series of 8-12 infusions each. I am back on the Wellbutrin and am climbing to 450 mgs.


@yurybx

 

[yurybx]

@Jackb23, so you get a burst of energy from ketamine injections, but also insomnia as a side effect?
As for my referral to rTMS, in fact this was not the idea of the doctor (he proposed psychotherapy), but mine. I just went to the doctor and asked to direct me to rTMS. He asked me about my problems, and apparently making sure that I was adequate, he sent me to rTMS.

 

[Jackb23]

So I would group the insomnia and “energy,” both as byproducts of the effects that it had on me. I wouldn’t go as far to say that it targeted/addressed my brain fog and malaise specifically. It seemed to mess a lot of things up in my brain stem. I began to profusely sweat when that had never happened before (like through shirts), I was having to pee 30+ times a day, my body temperature would never drop at night (although Benadryl blocks acetylcholine which doesn’t help this either), and any smattering of stimulant seemed as though it was made from rocket fuel. Why this happened? ... I have my theories, but I don’t know and will most likely never know. Ketamine has many sites of action, and these many sites of action all have downstream effects.

 

[gbells]

The placebo effect is a wonderful thing.

 

[redo]

I did both high frequency rTMS to my left DLPFC and then both high frequency L DLPFC and low frequency to my R DLPFC. I’m sure I’m a unique case, but for me it’s resulted in an almost 2-3 year disaster as the effects linger. It left me with cervical myclonus, parathesia all over my face, and an inability to tolerate any of the antidepressants that I had previously been on for many years. That’s just me though.
If you are pondering whether or not to spend all of that money I would say consider the fact that rTMS failed to be approved at first due to its lack of efficacy. Several years and several studies later, they found some evidence that it might help some. If it were me I would save the money. Ketamine infusions can be found for much cheaper. A ketamine like drug, Esketamine, will most likely be approved for use in the next 6 months. It is being fast tracked and has completed multiple phase 3 trials. As for off label treatments there are probably several that you could try that won’t drain a bank account. Mirapex or pramipexole is a Parkinson’s drug that they have found to be of use in extremely hard to treat cases.

There are many tricks I have found useful over the years. I have struggled a ton with depression and have dedicated most of school time to study it. However, my overall knowledge is just a smattering.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5143506/
Mirapex study


https://psychnews.psychiatryonline.org/doi/full/10.1176/appi.pn.2018.pp9a1
One of many esketamine articles

Thank you for sharing, Jack!

Can I ask you, were you given rTMS for depression or as an experimental CFS treatment?

I have PET scans showing abnormally high metabolism in parts of the prefrontal cortex, and I am curious to whether rTMS could, well, stop parts of the brain running in high-gear and thus give symptom relief. But I am kinda unsure whether it would be worth the risk, as there's a non-negligible chance that I'd become another unique case, getting the same ghastly side effects as you've got. How are you today, btw? Have the side effects vanished or are they still there?

 

[Jackb23]

Thank you for sharing, Jack!

Can I ask you, were you given rTMS for depression or as an experimental CFS treatment?

I have PET scans showing abnormally high metabolism in parts of the prefrontal cortex, and I am curious to whether rTMS could, well, stop parts of the brain running in high-gear and thus give symptom relief. But I am kinda unsure whether it would be worth the risk, as there's a non-negligible chance that I'd become another unique case, getting the same ghastly side effects as you've got. How are you today, btw? Have the side effects vanished or are they still there?

hello,

I was prescribed rTMS to address the symptoms that I was having. They called it depression due to my extremely low levels of energy, cognitive dysfunction and negative affect. I believed that depression was the issue at the time, too.

I really wish they would have done a PET scan before they decided to experiment with different frequencies and locations. I probably would have suffered a lot less these past 3 years had they not pushed me to keep going to the rTMS treatments.

They have found in rats that rTMS affects genetic expression for quite some time, namely CDK-5 and PSD-95. These are both involved in glutamatergic and dopaminergic transmission.

As for the side effects, I still have them. My neck and legs still twitch (myoclonus most likely), my face still tingles and my sleep is still pretty messed up. The agitation has somewhat dissipated but my response to medications and supplements that used to be very benign in side effects still remains. I cannot tolerate Wellbutrin like I used to be able to which really sucks because it was very beneficial. I can’t tolerate anything that touches serotonin, and that includes autoreceptor activity such as when i take lithium. and I can’t tolerate adderall or focalin (not that big of a problem because they induced a very severe fugue when I took them for many days straight).

I have tried to change my brain metabolism and connectivity through Neurofeedback which has helped some with the twitches and the paresthesia. The hard thing about neurofeedback is finding the right protocol.

I did Z-score Neurofeedback and found that extremely beneficial. I was a moron, however, and did way too many sessions, way too quickly (30 in 3 weeks). When This gave me side-effects due to the rapid brain changes, I grew discouraged and had the guy change the protocol. We worked on stripping my brain of all excess moderate and high waves— alpha, beta and gamma. This resulted in a very large increase in delta and theta. Strangely this brought back the agitation, twitches and parasthesia which I had attributed to excessive high activity before. I’m now working on going back to the first protocol.

Whats counterintuitive is that they have found agitated depression to be correlated with excessive slow waves in one study (can find the link if you want). I think this is due to lack of top down control resulting in excessive limbic activity.

rTMS is definitely a risk, they also underreport the side effects and unlike medications (in most cases), the side effects are long lasting. It’s also very expensive and if you wanted them to correct for activity they changed in the wrong way, they likely wouldn’t agree to.

What are your other options and what particular symptoms are you trying to address?

 

[redo]

Took it too far? I feel you! I've been on some treatments where I've thought that the worsening was temporary, if I'd ride it off I'd improve all in all. But only got way worse, all in all.

Do you remember how many sessions you had until you felt worse? I am seriously considering rTMS, but am wary. Very wary. My symptoms are primarily cognitive dysfunction and derealization. And numbness and more. I actually got somewhat of the same reaction as you, all of a sudden being waaaay more unable to handle drugs.

I did Z-score Neurofeedback and found that extremely beneficial. I was a moron, however, and did way too many sessions, way too quickly (30 in 3 weeks). When This gave me side-effects due to the rapid brain changes, I grew discouraged and had the guy change the protocol. We worked on stripping my brain of all excess moderate and high waves— alpha, beta and gamma. This resulted in a very large increase in delta and theta. Strangely this brought back the agitation, twitches and parasthesia which I had attributed to excessive high activity before. I’m now working on going back to the first protocol.

I didn't get this. Z-score neurofeedback. What's that?

 

[Jackb23]

Took it too far? I feel you! I've been on some treatments where I've thought that the worsening was temporary, if I'd ride it off I'd improve all in all. But only got way worse, all in all.

Do you remember how many sessions you had until you felt worse? I am seriously considering rTMS, but am wary. Very wary. My symptoms are primarily cognitive dysfunction and derealization. And numbness and more. I actually got somewhat of the same reaction as you, all of a sudden being waaaay more unable to handle drugs.



I didn't get this. Z-score neurofeedback. What's that?

I did 23 left High frequency (10 Hz) and Around 17 right low frequency. Both of these were over the dorsal lateral region. I noticed the negative effects after about 12. Coffee began to feel very different and overwhelming. After 17 I told them I wouldn’t be coming back. The hard part is that the effects continued to build even after I stopped (They said this is common).

what I would suggest is only doing 2-3 a week rather than 5 a week. It will be easier to track.

“Early symptom improvement at 10 sessions as a predictor of rTMS treatment outcome in major depression”

https://www.sciencedirect.com/science/article/pii/S1935861X17309439

I would show this to your doctor maybe, it may help him be more cooperative to go slower.

also, are they planning on doing it over the dorsal lateral prefrontal cortex? And at what speed?

 

[Jackb23]

Took it too far? I feel you! I've been on some treatments where I've thought that the worsening was temporary, if I'd ride it off I'd improve all in all. But only got way worse, all in all.

Do you remember how many sessions you had until you felt worse? I am seriously considering rTMS, but am wary. Very wary. My symptoms are primarily cognitive dysfunction and derealization. And numbness and more. I actually got somewhat of the same reaction as you, all of a sudden being waaaay more unable to handle drugs.



I didn't get this. Z-score neurofeedback. What's that?

neurofeedback uptrains or downtrains frequencies in your brain through an eeg. They have used it for cortical lesion patients and also multiple sclerosis. Studies have been done for both of these. Live z score Neurofeedback works in real time and it compares your brain activity at 19 different sites and trains them according to how their activity differs from the normal population in terms of standard deviations

 

[redo]

I did 23 left High frequency (10 Hz) and Around 17 right low frequency. Both of these were over the dorsal lateral region. I noticed the negative effects after about 12. Coffee began to feel very different and overwhelming. After 17 I told them I wouldn’t be coming back. The hard part is that the effects continued to build even after I stopped (They said this is common).

what I would suggest is only doing 2-3 a week rather than 5 a week. It will be easier to track.

“Early symptom improvement at 10 sessions as a predictor of rTMS treatment outcome in major depression”

https://www.sciencedirect.com/science/article/pii/S1935861X17309439

I would show this to your doctor maybe, it may help him be more cooperative to go slower.

also, are they planning on doing it over the dorsal lateral prefrontal cortex? And at what speed?

Thanks a million for the advice, spacing them out. I haven't actually got an appointment, I am only curious what this treatment has to offer.

Do you remember anything on how the procedure was, for locating the correct brain region? What I mean by that is that there are two ways.
• With "neuronavigation" (it's very rarely used!), looks like this. So this way they rely on old MRi scans to locate the correct part of the brain.
• Without "neuronavigation", where they like rely on the twitch of a finger when zapping, and then moving the rTMS machine afterwards, accordingly, to find the right part of the brain (I know, I guess the description is a bit off, but it's from memory, I haven't googled).

It's common for conditions like OCD and depression to do rTMS without neuronavigation. I hope you remember some if it was with or without neuronavigation. I have only skimread the study @hixxy linked to in the original post, but from what I've read they didn't use neuronavigation, which makes it more of a shotgun approach. Instead of the sniper, they'd get with neuronaviation.

 

[Rufous McKinney]

As part of treatment I have also tried Thyroxine, HRT, Modafinil

How was your modafinil experience?

 

[Jackb23]

Thanks a million for the advice, spacing them out. I haven't actually got an appointment, I am only curious what this treatment has to offer.

Do you remember anything on how the procedure was, for locating the correct brain region? What I mean by that is that there are two ways.
• With "neuronavigation" (it's very rarely used!), looks like this. So this way they rely on old MRi scans to locate the correct part of the brain.
• Without "neuronavigation", where they like rely on the twitch of a finger when zapping, and then moving the rTMS machine afterwards, accordingly, to find the right part of the brain (I know, I guess the description is a bit off, but it's from memory, I haven't googled).

It's common for conditions like OCD and depression to do rTMS without neuronavigation. I hope you remember some if it was with or without neuronavigation. I have only skimread the study @hixxy linked to in the original post, but from what I've read they didn't use neuronavigation, which makes it more of a shotgun approach. Instead of the sniper, they'd get with neuronaviation.

they didn’t use neuronavigation, they used the finger twitch method.