Seizures and Constant Headaches: My TMS Experience

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For most of my adult life, I have been trying so many different ways to cope with depression and the demons of my past that still haunt me. I have been on multiple medications, seen multiple therapists and psychiatrists, and read every self-help book I could find. None of these attempts to heal would change my life the way that TMS did—and not for the better.

Since November 2019, I have been struggling with depression to the point of making suicide attempts leading to hospitalizations.  I was at the point of going to an inpatient facility or trying something new that might help me. I was definitely at the end of my rope. Earlier that year, my psychologist had suggested that I get in contact with a psychiatrist she had met who was working in the field of Transcranial Magnetic Stimulation (TMS). He had a private clinic and she had just toured his facility.

So I talked the idea over with some friends and family and decided that I would try TMS and do all I could to make the treatment work for me. I even went so far as to take a loan from someone close to me to cover the cost of the treatments and the drive to and from the clinic, a three hours-plus round trip. I have always been a realist, but this technique sounded like it might help me, and I felt myself becoming almost hopeful for positive results.

I had my first appointment with the psychiatrist, during which he performed an extensive background interview resulting in his approving me for treatment. He said that I had a high chance of seeing great results and told me the side-effects were so minimal that he’d felt confident allowing his own daughter to become his first patient. After doing TMS, she had had a huge decrease in depression and anxiety, he said. I agreed to start the sessions on a Thursday and so I set up an appointment for the mapping session, during which they would identify the section of my brain where they would target the treatment and determine the level at which it would be applied.

Looking back, I sensed that there was something wrong on the very first day. I was seated in the chair and they started to take measurements and put the magnetic coil and headpiece on my head. To say that my anxiety spiked was an understatement, but at that point, I had completely bought into the process, so I toughed it out.

The psychiatrist stated that he was looking for movement in my thumb so that they could determine the intensity needed for the “therapeutic threshold.” The pain in my head that I felt during this session was minimal in comparison to what I’d experience in the future, but something intuitively didn’t feel right.

Nevertheless, I continued to seek treatment. The second day they started at 50% of my tolerance and told me that my anxiety was deterring my ability to reach the proper threshold. In other words, I was too nervous and I would need to calm down if the treatment team was going to be able to increase the intensity to reach therapeutic levels of TMS. I tried my best to tolerate the intense, jolting pain, but on the first full day, I just couldn’t get myself to let them bump up the strength. It took three sessions to get to the point where they said I was at my limit. No words could ever be more literally true.

I drove myself home that day, and the usual 1.5 hours one way took over three because I had to keep stopping. From the pounding headache and light sensitivity to the decreased concentration I was having, I was no match for driving on the highway. I called my aunt and told her I didn’t know what to do, that I sensed the doctor and technicians were judging me, and that I felt like a failure. I have a self-deprecating side anyway, but this experience made me feel like I was wasting my time and money.

Still, I had taken a medical leave from work and was committed to completing the sessions. I had resigned myself to a severe decrease in income in hopes of finding some relief. At the time of the treatments, I was staying at a friend’s house because I was afraid to be alone. I was still depressed, anxious, and in pain.

As I continued to pursue my TMS sessions, I constantly asked the people administering treatment if it was supposed to get better. I wasn’t sleeping, and I had a persistent headache. I told them that when they placed the helmet on me, it felt as if an ice pick were jabbing me in the temple, with the pain radiating all the way to the middle of my forehead. They reassured me that it would get better and that I should just take a Tylenol before coming in to decrease the pain during treatment. I should have stopped it right there, but I was so desperate and wanted to believe TMS could be the thing that helped me and changed my life.

The pain got so bad one day that I called the psychiatrist from the parking lot after a session.  I had left the office but didn’t feel right about driving yet.  He was “too busy” to be seen when I was inside, but he did return my call then. I started crying and told him that I didn’t know if I could make it through and wanted guidance. Was this for me? Was I a good candidate still, even with the intense headaches? He said that I was only a quarter of the way through the treatment and promised that it would get better day by day.  I again believed him, made the trek home, and tried again the next day.

During the course of treatment, despite being on short-term disability, I was still working half days, leaving at lunch to drive to the clinic, then coming back to crash and try to get rid of the resulting pain before work the next day. In my second week of TMS, I even had to skip a Friday appointment because my headache was so bad from the previous day’s treatment. They just told me to come in Monday and we would add the day to the end of treatment.

Business as usual for them. For me, it felt like a crushing defeat.

Still, I felt that I had to push through, that I would be letting everyone down if I quit. I had attempted suicide the previous month, so I felt like I just couldn’t let my family and friends believe I had given up again. Since I had taken that loan, I felt that I owed it to the person who gave it to me to keep trying.

Also during the second week, I started to bring my service dog, Bodhi, to my TMS sessions. Having him there definitely decreased my anxiety but did nothing for the physical pain that I was enduring. He could tell I was in distress and was very alert to my pain during treatment, nudging me by placing his paw on my lap and trying to raise my hand with his head.

Bodhi was trained to help me during panic attacks, has also gone through scent training, and is pretty accurate in “alerting” to me; he knows me better than I know myself. I put him through a lot of sleepless nights as I suffered through panic attacks, night terrors, and endless bouts of crying before and during the TMS treatments. I didn’t know that he would be put to the ultimate test during my final round.

I don’t remember much about my last treatment. At that point, I had had only 10 sessions under my belt. I was supposed to get a total of 36. However, during this particular session, I had a grand mal seizure, which put an end to my treatment altogether.

I was hooked up to the helmet and was in the process of receiving the magnetic pulses (which felt like shocks) when Bodhi really started alerting on me. I thought that he was just picking up on my stress, so I tried to pet him and reassure him that I was fine. The pain that day was pretty intense. I remember asking the administering person if they could turn it down and also biting my cheek hard during one of the “shocks.” She told me that some people use mouth guards to protect against that. So once again, I thought there must be no problem; I was just being a baby.

The last thing I remember was grabbing Bodhi’s leash and then trying to tell the administrator that I didn’t feel well.

I woke up to find myself surrounded by paramedics and feel Bodhi lying on my lap. They told me that I had had a seizure and had been in full grand mal for 45 seconds to a minute. They recommended transferring me to the ER right away, and I complied, even though I rejected the idea initially because I was worried about how much an ER visit and ambulance ride would cost. Thankfully, my dog was with me through it all, showing that he was up for any test that I could put him through.

At the hospital, I was given a CT scan and an EEG, and later told to follow up with a neurologist, which I have been doing ever since. My EEG came back abnormal. I also received a new diagnosis: epilepsy.

I am now trying to understand what life is like with a seizure disorder and have to take antiseizure medication. Before the TMS treatment, I had never had a seizure in my life. After TMS, I have had more than five in the past month and a half. The last one occurred at work. So now, besides having lost money and time from my job, I have lost my sense of security and feeling of confidence in doing the smallest of things. I worry that now I am a ticking time bomb, just waiting for the next seizure to hit me. Besides this, I have not gone a day without a headache since I started TMS treatment last August. And I still suffer from fogginess, trouble concentrating, and can no longer drive due to state laws.

TMS has indeed changed my life. It was supposed to be a saving grace, but instead has been nothing but a nightmare.

One silver lining is that I found an online group of people like me who have had negative effects from TMS. It feels good not to be alone in this, but it is also disturbing to see that so many people are suffering short- and long-term side effects from this treatment. Many of these people, like myself, went into it with confidence in their doctors’ recommendations and did everything they could to make it work. Like me, they were desperate, looking for an answer, seeking something to switch their path and take them in a different direction. None of us knew that this direction would be so life-altering.

I want to make sure that people know my story and listen to others who are having the same issues. TMS is an FDA-approved treatment option for people like me who have had treatment-resistant depression symptoms. We trusted it and believed our doctors. Doctors have to swear an oath to “do no harm,” but I just don’t see how they can keep that oath and knowingly persuade people at their darkest of times to do something that might damage their livelihoods and quality of life. My life is different now, for the worse, so persistence and the will to get better will have to hold me together so I can keep fighting and keep moving forward. I am trying to work with a lawyer to learn my options.

And the TMS facility? Haven’t heard a peep from them.

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

39 COMMENTS

  1. To a normie, this story would appear to recount the most horrific sort of health care fraud. But, survivors of psychiatry know well the trajectory and fallout of mental health “treatment” that can maim a body and upend a life. I sense a collective shudder at themes of Dani’s story: how she was expected to remain “loyal” to everyone (friends, employers, quacks, etc.) but herself, a “standard” of medical progress that she couldn’t reach without subjecting herself to more and more torture, a demotion from woman to “baby” when she acted upon her intuition, which had developed from decades of life experience. Let’s hope she sues her quacks for every last cent.

  2. Dani, Your story made my heart ache. I’m so sorry for all of the pain you’re enduring and for the awful treatment you received from this psychiatrist. At the very least, you could register a complaint with the FDA adverse activity website—-not sure of the exact name, but TMS sounds an awful lot like ECT minus the seizures—and you had one. I bet seizures are out of the ordinary for adverse reactions. I hope you can find a good ally in your search for healing.

  3. Dani –

    Thank you so much for sharing your story. This means so much to me and all the other TMS harm survivors I have met. Your incredibly brave and kind for sharing it. I hope we find means for healing in the coming years.

    It is so incredibly frustrating that this is still happening to people.

  4. “We trusted it and believed our doctors.” Because “Doctors have to swear an oath to ‘do no harm,’ but I just don’t see how they can keep that oath and knowingly persuade people at their darkest of times to do something that might damage their livelihoods and quality of life.”

    I reminded a psychiatrist of his Hippocratic Oath once, and he looked at me as if I were from Mars. And my experience with, and research into, psychiatry and psychopharmacology, is that harming people for profit, is the only goal of psychiatry.

    Thank you for sharing your story, Dani.

  5. Standard fare for those who jump down the psychiatric rabbit hole. Sadly, the vast majority learn the hard way by experience as most of us here have. Your story adds to a very large tome that continues its rapid growth unabated by any will of the political class or news media to change anything, power dynamics being what they are. Welcome to the club no one wants to be in. I wish you the best in your path to recovery.

  6. Dear Dani, your story and the intensity of the adverse effect that you’ve experienced is for sure very rare. I cannot judge the researchers/doctors’ decisions on your case, but we (in my team) never continue the treatment if a patient is experiencing continuous pain that does not go away when the pulses stop (I have been applying TMS high frequency for Alzheimer’s treatment over the last 10 years). I am very sorry for what you’ve experienced; you could and should report it to the Ethics board in charge of that treatment to investigate why your warning symptoms were neglected if that is the case. Have you had a brain MRI since this experience? Indeed it is the first time that I’m hearing TMS has caused repeated seizure on somebody with no history of seizure before; that’s why I’m wondering if you had some undetected condition for seizure; doesn’t hurt to check it out by going to a neurologist and request an MRI. Nevertheless, the cause of your repeated seizures must be found and treated. TMS might have triggered it but TMS cannot cause repeated seizures after the application is stopped; please note that determining “cause” and “effect” is different than just associating two events.

    By the way, in repose to the fellow who wrote humans are genie pigs for this experimental treatment, just a few facts to consider: TMS safety in general has been tested in animals. However, there is one major handle that we cannot test for example the protocol of depression or Alzheimer’s or any other disorder’s treatment on animals because in these treatment our goal is to deliver pulses to a very localized area of the brain; doing that on animals is impossible at least with current technologies. It is because the mice or genie pig’s brain is so small and we cannot design a coil that small that can deliver pulses to a localized area of their brain.

    Having said the above, based on my experience, I would say TMS treatment is not suitable for everyone. It is up to the researcher/doctor to watch for the side effects as well as the benefits versus plausible harms to decide whether to continue or not.

    • MissDolittle,

      Your comment perplexes me a bit. The lack of detail is a little troubling to me, depression for 50 years and all it merits is a single sentence of description, saying it is so? Your comment serves better as an intent to invalidate Dani’s story. So i would guess that is your intention. Her life has been severely altered and all you can muster is a sorry but I am great? Not only does that offer as insult to her I am sure, but to everyone that reads this in the future that could be injured by TMS and disregard this article because of a trite comment.

      Maybe I am wrong about your intentions, why don’t you tell me?

  7. The idea of any treatment “sending depression into remission” seems to compare depression to a disease like cancer; which can and does have a history of being sent into remission. This would imply a biological/chemical basis for depression. I think that that is definitely being disputed and questioned by many intelligent people, particularly on this website. I think one of the things this website has proven is that the cure is actually far worse than the disease as many such as the writer of this article can testify. Tragically, in many instances, it is actually the drug or other treatments that even cause the various symptoms other classified as a mental illness. Thank you.

    • I can only speak for myself and am using the terms my psychiatrist used. I did not take any drugs. I have stopped being suicidal after 50 years of struggling. I enjoy life as I never have before. So forgive when I do not care what anyone says about TMS. It worked for me just fine.

      • I am concerned when you say you don’t care what anyone else says. TMS may have worked for you AND harmed others. Does it not concern you that others may have been harmed? Does it invalidate your success that other people may not have experienced the same thing? It is OK that you found it very helpful and other people found it unhelpful?

        • Do you drive a car? How many people do you know that were killed in a car? How much do you care about that? That’s the same level I am on.
          No, it does not invalidate my success. I said I am sorry that the writer had problems. I can’t stand the thought that other folks maybe able to find help and won’t get it because of someone not having had success with it scared them off. I offered a perspective, not more, not less.

          • If the car itself had a flaw which only occurred in one car in 100, but that one driver got killed, I’d care a lot about that, and the fact that you had no trouble with your car would not convince me that the car did not pose a danger to drivers. I hope that distinction is clear. The assertions here are not that someone had an accident with the car, but that there is an “intermittent” problem with the car itself that most people won’t see, but those who do see it can be seriously harmed. This is a very real problem seen frequently in psychiatry. Only one person in 20 becomes psychotic on stimulants at normal dosages, but those 1/20 can be severely impacted. Only perhaps one in 200 have a violent outburst due to being on SSRIs, but those small few include murderers. Should we not tell people that this is a risk, even if the risk is small? It is not reasonable to minimize or dismiss real risks just because they don’t happen that often. The stories being told tell me that such risks are very real and should be taken into account as a person considers this treatment, even if some people choose not to risk it as a result.

      • Posted for KindredSpirit:

        MissDolittle, of course, TMS *can* help people because that’s how the placebo effect works. What hasn’t been demonstrated is that the help you believe you got from your treatment should somehow have more weight than the stories of harm from those who were not helped by this treatment. There will always be people who feel that TMS or ECT or psych drugs helped them. There will always been people for whom these treatments were neither helpful nor harmful. But we also have to sit with and reconcile the pain from those who’ve been deeply harmed by these treatments.

        You seem to think “screw you, I’ve got mine” is a reasonable response to someone else sounding the alarm about the damage these treatments have and continue to cause to people who weren’t as lucky as you.

        You haven’t done anything to prove the efficacy of TMS, only your lack of compassion.

        • Where do you get all those conclusions from? Why would my statement have more weight than the article? That weight then comes from you, not me.
          What I don’t care for are statements that express doubts at my very words when all I intended was to offer a perspective.
          I don’t need to prove anything to you or anyone else..I AM living proof. If you want to believe it to be a placebo effect, ok. Doesn’t make a difference to me nor does your silly attempt to accuse me of lacking compassion.
          And with that I am leaving this discussion. This is getting ridiculous.

          • Posting as moderator:

            As I said before, I expect people to respect that others’ experiences are valid. That goes both ways. It sounds as if some are experiencing your comments as invalidating the experiences of those who have had different experiences than you. It sounds like you have felt the same way about others’ comments. That’s what I am concerned about.

  8. Zmoussavi,

    While I can appreciate you more balanced assessment of TMS, I am not sure your tracking accurately with Dani and what TMS is. You said ,

    ‘TMS might have triggered it but TMS cannot cause repeated seizures after the application is stopped; please note that determining “cause” and “effect” is different than just associating two events.’

    You are regurgitating rubbish from the manufacturer, which you are encouraged to believe is medically true(even though it is not) but is scientifically is false. TMS uses electromagnetic induction to generate electrical current in the brain – Electricity introduced into the nervous system causes seizures and epilepsy just like ECT has been proven to. This does not even breach the subject of the electroporation damage done by the rapidly alternating polarity of the electromagnetic fields used by TMS, which causes cell death in the brain which could also cause seizures and epilepsy. These are permanent physiological changes to the brain and nervous system which can and will cause long lasting conditions like epilepsy.

    Some of my Docs tried to pull the same rubbish on me, telling me that i must have spontaneously developed some other condition during my TMS treatment. I really get the motivation to go with the easy answer here but continually picking out the rarest and least likely explanation is not doing anyone any favors, Occams razor might be the right way to go if you are not certain, not just when its convenient.

    • Commenting as moderator:

      I am not speaking to a particular poster in saying this, but I think it needs to be said.

      I think this discussion will be a lot more productive if each person allows that others may have had different experiences, and not try to “explain” how other peoples’ experiences have happened. I think we need to respect that different people experience the world differently, and the fact that something “works” for one person does not mean the other person’s experiences are not due to the “something” that person one feels like works for them. Or vice-versa.

      It seems to me that the science on TMS is not very well determined, and the “science” on “mental health” is almost completely absent. So we’re going to get into different opinions and experiences, and that’s OK. Especially when dealing with something as amorphous as “depression,” there is no reason to believe or expect that any two people will have the same experience just because they’re both feeling “depressed.”

    • James Hall
      You obviously do not know the fundamentals of ECT and TMS. I am a scientist with engineering background and have no connection with the TMS manufacture at all. So, please before you insult me and my colleague researchers and write that I say rubbish, study the fundamentals of electricity and the two technologies, and then read at least 10 journal papers on the research of each and then comment.

      • He nor people like Dani, nor countless others have no need to become neurologists or engineers or read journals, in order to know what this garbage is capable of doing.
        Science and engineering degrees are useless in understanding the brain. You can only ever attempt to make hypothesis.
        And they would be false.
        So honestly if you possess or operate a machine that “corrects” things, perhaps neurology should use them? Or you could use them to fix a shitload of brain problems if you can fix “mental” problems. Why not fix things like seizures, where you can actually see where they are?

      • ZMoussavi,

        Please feel free to let me know the merits of your thoughts. I am not sure why you are convinced I do not know the fundamentals of ECT or TMS when I mentioned their primary mechanisms of injury which are established in the fundamentals of Bio engineering and also in the
        expert testimony presented for ECT litigation. If you haven’t looked up electroporation cell death or Thelen V Somatics, they are very illuminating as to exactly how these injuries are occurring in both ECT and TMS.

        I am also concerned you felt I offered you and your colleagues some form of insult on the first use of my term rubbish. That was not my intention nor did i do so. I called the manufacturer literature rubbish, which it is, they are trials designed to dismiss injury and overlook the real complications of TMS. Phil Hickey wrote an excellent piece on it, which I have found to be true after interviewing hundreds of people that have undergone TMS. His article is here –

        https://www.madinamerica.com/2014/02/transcranial-magnetic-stimulation/

        As for the latter use of the term rubbish, you can take insult if you like to that one although I did send that one your way directly, simply to anyone that thinks denying the likely direct cause of harm to a patient’s detriment is a good idea. If a patient says this is what caused their injury this should be taken seriously and not play second fiddle to any research. As research is designed to prove something under certain very specific conditions, not disprove any other occurrence under any other condition. Scientifically that is impossible. Invalidating a patient or person simply because the treating physician is indoctrinated into thinking something is harmless when they have no proof something is harmless is incredibly dangerous.

        If your rebuttal is coming from some sort of authoritarian response, it doesn’t really hold up here, nor should it anywhere else. Everyone has the same inherent right to have their opinions considered regardless of background, education or character. It’s a bit bold to assume I need to read 10 journal papers on the matter when I did not disclose how learned, researched or well read I was in the first place.

  9. James,
    One thing that I’ve noticed is how people’s testimonies of bad effects are considered “anecdotal”, yet if they report feeling better, it is considered proof. But mostly if one is quiet and drooling, or twitching, not able to form thoughts, it is considered as “effective” and a good result.

    • Psychiatrists in general seem to get very upset if you have an issue with whatever treatment they are doling out to you; whether drugs, therapies, ECT, TMS, or whatever they dream up in the future. In fact, their attitude seems to be, “do this or take this even if it kills you.” But then, if your are dead, you can be “maintained” anymore. But, then, the majority of them probably don’t care, in my experience. They’ll just find and seduce another innocent guinea pig for their experiments. Thank you.

    • Sam –

      Its very true, I see the same thing in big business. Any convenient data gets fully incorporated into decision making but anything that makes the wheels squeak gets disregarded. The reason the comparison is important is because, being in business for a long time, i always saw the problems and would actually consciously think, thank goodness other important areas like medicine don’t operate like this.

      Come to find out, they do, and knowing all the ins and outs of the cheating business world, i immediately saw the depths of corruption plaguing the medical system especially psychiatry once i had to use it.

      To me the problem seems to quite planely be the lack of third party independent oversight. No decision that ever impacts a persons health should be decided by an interested party(this really goes for almost every other type of business as well but that could be debatable) it should always be a truly neutral party… Look what happened to Peter Gotzsche at Cochrane, and how Cochrane is run now… You cant even build an independent institution to benefit people because the perversion of others will seek to destroy it immediately. The sad thing is that it is a very simple concept and even simpler to execute, although others will convince you its so complicated and expensive it could never be done – complete Lie.

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