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  • #4867

    sooxie
    Participant

    Hi all–I begin my series of TMS treatments tomorrow. Any words of wisdom would be appreciated.

    #4870

    colleencasey
    Participant

    sooxie:

    I am not sure about wisdom, but a few ideas about starting treatment:
    Everyone’s experience, is similar in some ways, but also very different in others. In lieu of this, it is important to communicate continually with your Dr. and TMS Technician. It is a medical procedure that you are undergoing and it has challenges like any other that with guidance and support from the staff and your diligence are manageable.
    Your emotional response to TMS may fluctuate from feeling better to feeling worse (the dip), to maintaining, etc. It can be somewhat like a roller coaster ride. Try not to project the outcome based on 2, 10 or even 30 treatments. Response time is different for everyone so keeping connected to your Dr. and TMS Technician again is important. TMS takes time to work in the brain. Sometimes we can get discouraged through the course of treatment, use your supports and Dr.’s guidance. Let her/him assist you in assessing the outcome. Try not to do that yourself.
    Good luck and keep connected.

    • This reply was modified 9 years, 9 months ago by  colleencasey.
    #4873

    sooxie
    Participant

    Colleen–Thanks so much for your input. It is very helpful to be reminded of the variety of responses people have, especially because a part of me is expecting a quick fix. (I may know intellectually that this is most likely not the case, but 12 months into this depressive episode I am ready for relief!). Please continue to offer insights–I will be checking back throughout treatment (which actually begins February 16)–
    Sooxie

    #4875

    colleencasey
    Participant

    sooxie:
    You are welcome. I find in the TMS Patient community, many patients who have had success with the treatment are enthusiastic about supporting those considering TMS, going through the treatment and adjusting to a new life as a result of a positive response.
    First, I think attitude, persistence and perseverance are essential elements when dealing with depression. Owning the fact that this is our illness and we need to figure out with the medical community how to manage it is an important goal.
    Many of us entered TMS treatment with a desperate desire for a quick fix. Know that you are in good company. The treatment needs time, patience and consistency to work. Keep as positive and hopeful as possible and use your supports when needed as often as needed. They can bring clarity when we are experiencing the ups and downs. Again stay connected to your treatment team and to this sight. There are offerings from many supportive, insightful and intelligent people here. There are also resources here you may want to browse through that may give you additional information.
    There are several depression scales that TMS Treatment Teams use to assess the depth of depression and a patient’s response to the treatment. I found those helpful, (not so much during the dip – as I did not understand at the time that the dip can be a normal course during some patients’ treatment), in allowing me to concretely observe my eventual positive response to treatment, especially after treatment ended. They usually are administered throughout the course of treatment as well.
    If you find helpful tips during treatment too, please share as you will find you have a lot to offer too!

    #4896

    sooxie
    Participant

    I finished my second treatment today at 1pm. I can’t imagine anyone calling TMS “a gentle tapping,” though I know the sensation is as individualized as the outcome. I am thinking that 28 more sessions is a a huge investment–not just in terms of discomfort but also time and hope. I can really sympathize with users who gained no relief after 6 weeks of cautious optimism.

    #4897

    GraffinLA
    Participant

    I’m a broken record here, but I required 70 treatments to get better. If you have any inklings of feeling better, even if it’s for an hour here and there, that’s a sign than TMS will work for you. Keep going until you get there.

    #4898

    GraffinLA
    Participant

    Also, expect lots of fluctuations. It can be frustrating, but know that the ups and downs are a signal that your brain is taking to it.

    #4901

    patrickjf
    Participant

    Good luck Sooxie. I’m on session 12 and I agree with you that I wouldn’t describe it as a gental tapping. It’s usually fairly painful, I just grit my teeth and look forward to the end of the session. I don’t regret starting TMS. Everyone isn’t receiving the same in intensity. It depends on the Motor Threshold that the Doctor found in the first session. The higher your calculated Motor Threshold will determine the higher intensity of the pulses.

    #4903

    colleencasey
    Participant

    GraffinLA:
    I had the same feeling about repeating myself. However, when new people log in and post, the advice or information you gave previously may very well be helpful to them too. The new contributors may not have time to read all previous posts so I would say repost your info if you think it would be helpful.
    Just to speak about your life previous to your depressive episode. I cannot identify with not being depressed previous to TMS. But when I thought about experiencing another depressive episode after success with TMS, I could understand your drive and persistence to return to that non-depressed mental health state. It seems like you use this as a motivation to drive you forward. Thanks for sharing and bringing yet another element of understanding to the challenges this illness poses. Sharing your goals and efforts is informative and inspirational.

    #4904

    colleencasey
    Participant

    Sooxie:
    Hopefully the degree of discomfort lessens to a more tolerable level as treatment proceeds. This lessening has been reported by many patients. Stay connected to your treatment team with any and all issues. They may choose to make adjustments.
    This is a challenging medical treatment for many. Try to keep your eye on your purpose and goal for choosing TMS treatment when discouraged. Graffin and Patrick have offered important information. As challenging as treatment may be for each of us individually, we are all worth the efforts for an improved life.

    #4906

    sooxie
    Participant

    I finished my third treatment today and wanted to note a couple things. First off, the tapping has definitely lost some of its bite since Monday, which is great. (Honestly, though, I would bear whatever the discomfort to be able to complete TMS therapy. I’m desperate for something to work–as life has dwindled into a blur of naps and roboting thru the rest of the day.). Secondly, I am heartened by the community of voices this site offers. I am really realizing, 1/10th thru, that treatment is for the long haul and can’t be rushed. Many of you counsel patience–which I can’t hear enough. Plus, I appreciate all other anecdotes re fluctuations, dips, etc. All of this combines to make my walk a little easier. Thanks.

    • This reply was modified 9 years, 9 months ago by  sooxie.
    #4908

    sooxie
    Participant

    PS. I check back at least once a day, so if you have any insights re depression or TMS please write!

    #4909

    GraffinLA
    Participant

    Once you get used to the treatment, talk to your doctor about going up in power. After two weeks I asked them to crank it up as much as possible. It becomes very tolerable.

    Granted, your mileage mary vary, but i wanted to get the most out of each treatment.

    #4910

    Greg
    Participant

    Sooxie,

    Just wanted to suggest some Advil for the head tapping.

    It gets easier for sure,
    Wishing you all the best on your journey.

    #4912

    sooxie
    Participant

    Graffin and Greg–thanks both for writing. Today, treatment 4, I think I could have slept thru, so the intensity is lessening definitely. I asked about “turning up” the power and my doctor does not adjust unless we had to start at a weaker setting due to pain. I know I am only 4 sessions into it, but I swear running to the grocery store was easier than usual and I felt I could look people in the eye. Might have been due to coffee, though…

    #4914

    colleencasey
    Participant

    Sooxie:
    Thought I would just past this along. I slept through some treatments. One of the reps from the company who made the TMS machine I had treatment from told me last summer that staying awake is what is recommended so the brain is as active as possible during treatment. Not sure of the source of his info but he is a resourceful rep. Your response sounds hopeful.

    #4915

    GraffinLA
    Participant

    Don’t discount the little things, they’re a sign it’s starting to work. On Week 3 of my treatments I was driving through a sketchy area and loving every minute of it for some reason. The feeling passed an hour later, but I held onto that when I went back down for a while. If you have those blips of feeling better, that’s a great sign it will stick in the long run.

    #4917

    sooxie
    Participant

    Good info from both of you! My doctor does not allow sleeping, probably for the reason you cite, Colleen. And, Graffin, I like hearing that those little blips of sunshine may be evidence that the treatment is headed in the right direction. It is hard for me to quell my fears that this, like so many other things, will prove ineffective. I TRY to stay positive, but that almost feels like it’s jinxing myself. (I sound like I’m 12, but I’m 48…!)

    #4920

    colleencasey
    Participant

    Sooxie:
    You sound 48 to me! The fear of the unknown is difficult to deal with no matter what age we are. We want the treatment to work so deeply in our being, but we just don’t know if it will. It is challenging when we do not have a predetermined outcome for TMS. We do have hope, positive thinking and ownership of our illness which can provide us avenues to patience as we proceed.
    Back in the day, four years ago, the research on sleeping during treatment wasn’t released yet. But as time proceeds so to does scientific evidence of what contributes to the most successful outcome to TMS. It’s an ongoing process as there are variables to the treatment that are being experimented with on a continuum.
    Graffin’s sharing often speaks with great clarity of the details and intricacies of the process. Important information as you travel your path.

    #4921

    Greg
    Participant

    Sooxie,

    I can relate so much to your feelings and they are perfectly normal.
    Keep the faith and try to stay positive and don’t worry you will not Jinx yourself.

    #4924

    sooxie
    Participant

    End of treatment #5 and approaching the weekend. Wishing the sessions continued Saturday and Sunday…

    #4925

    GraffinLA
    Participant

    Keep in mind that your brain is still doing good stuff on the rest days. Now that I’m on boosters, it takes me a week after a treatment for everything to settle down. But yeah, I hated weekends too 🙂

    #4926

    sooxie
    Participant

    A question: what were the symptoms of depression that were resolved by TMS? How about ones that lingered? (I remember reading about someone’s brain fog and lethargy…)

    #4927

    GraffinLA
    Participant

    My mood has been consistently good, motivation, sleep, appetite. My family tells me they notice a huge difference in me. When I started treatment it was hard to walk around the block with my dog, I’m now back to running long distances and hitting the gym regularly.

    I was the one who mentioned the tiredness and fog still being there, I’ve been told this can take some months to resolve. But everyone is different and I was essentially not functional before I started treatment.

    I’m not back to 100%, but I’m in a tolerable place where I’m able to do the things that make life worthwhile for me, and I’m not in emotional pain. Hopefully the rest will come later.

    #4928

    sooxie
    Participant

    Graffin–thanks for writing and detailing your experience. Lethargy is one of my main symptoms, though I’m not sure that is the right word for it since it’s kind of a hitch that prevents action. So, this is why I’m especially interested in anyone dealing with that. Your posts are always informative–thanks for taking the time. Sooxie

    #4929

    sooxie
    Participant

    PS. Tomorrow begins #6-10. Feeling hopeful.

    #4930

    colleencasey
    Participant

    Sooxie:
    My experience is similar to Graffin’s. I would say the lethargy improved 90%. On rare occasions when I am facing challenges that are particularly painful I may slip back into some old thinking and subsequent feeling patterns that last only a matter of hours. They are not prolonged periods of time. Hopeless thinking has dissolved and resulted in positive thinking for probably 98% of the time. But I think some of the down times are just normal, short-lived down times.
    My thinking became much clearer and decisions have been much more effective and easier to make. Isolation is not part of my day or evening any more. Alone time on occasion is important and I value it. I have a quality of life I never could have imagined pre TMS.

    #4932

    sooxie
    Participant

    Thanks for your input, Colleen, and thank you for being honest re “short-lived down times.” Your progress offers me hope–your 90% and 98% are amazing. Today starts treatment #6–I’ll keep your story in mind as I proceed. Sooxie

    #4935

    colleencasey
    Participant

    Sooxie:
    Sending my best as you start your second week. Let us know how its going.

    #4936

    sooxie
    Participant

    Not sure what to write today. 7th treatment and I’m having a hard time being patient. I feel like I’m in a holding pattern and just sort of stuck. I want my next 23 sessions to be done so I can either a) feel improvement or b) try something else. Started 3000 Pulses today–hoping that distracts me.

    • This reply was modified 9 years, 9 months ago by  sooxie.
    #4938

    GraffinLA
    Participant

    I’m assuming you’ve tried medications, probably many. They usually take six weeks to work and at a certain point it’s throwing darts and hoping for the best.

    You’re in the middle of a treatment with no serious side effects and pretty remarkable effectiveness. Hang in there. Many of us were where you are now. I started treatment last July and only started to really feel better in November. Still have some symptoms eight months later but doing much better. This is a long process.

    #4939

    colleencasey
    Participant

    Depression is an “invisible” illness, as there are no visible signs to the naked eye that the brain isn’t working with a balanced chemistry. Lethargy, depressed feelings, etc., are symptoms that often are not given credibility to validate the illness. To the non-scientific community, the effects of TMS treatment in the brain are invisible also as we cannot see what is happening to our brain chemistry during and after treatment. Therefore there is a long period dealing with the unknown.

    Graffin could not have stated it more accurately. This is a long process so figuring out how to manage this reality can help support patience and tolerability throughout this challenging time. Meditating and mindful gratitude may be tools that could assist you in managing your emotions. Talk with your Treatment team. Their work with past and present patients could be a rich resource for coping strategies.

    • This reply was modified 9 years, 9 months ago by  colleencasey.
    #4942

    sooxie
    Participant

    Graffin and Colleen–
    Thanks both for your words of encouragement. The grumblings of treatment 7 have passed, and tomorrow I am officially 1/3 thru TMS. I still wish I could fast-forward the next 4 weeks–and I also wish I could force a positive outcome. This a.m. I was able to pretty easily load the washing machine–a small victory. Sooxie
    PS I am ~70 pp. thru 3000 Pulses–and it is worth the read.

    #4943

    colleencasey
    Participant

    Sooxie:
    Loading the dishwasher as you describe may be a hopeful sign. Two weeks into treatment is a major victory! Sending continued support.

    #4944

    sooxie
    Participant

    Thanks, Colleen–always good th hear your voice!

    #4945

    Greg
    Participant

    Sooxie,

    Hang in there.It started slow for me and then flew once I got to the half way point.

    Wishing relief for you!

    #4953

    sooxie
    Participant

    Thanks for the heads up, Greg!

    #4954

    sooxie
    Participant

    Today marks my 10th session. Monday I meet with my doctor to access progress. I’m not sure there is much–but, thanks to everyone’s sharing, I am not overly concerned with this.

    #4955

    sooxie
    Participant

    I’m wondering if anyone has had experience with Adderall. I took as a booster and it worked wonderfully for three days, and then after that has worked to inch up mood but hasn’t done much for lethargy.

    • This reply was modified 9 years, 9 months ago by  sooxie.
    #4958

    colleencasey
    Participant

    Sooxie:
    I was on Adderal for ADHD and it helped with organizational skills but not with lethargy. I had TMS on the right side and in corrected the ADHD so I don’t need any meds for it now.

    #4959

    GraffinLA
    Participant

    I’d recommend staying away from stimulants while doing TMS so you can assess when it starts working. Ideally, the TMS gets you to a point where you don’t need a stimulant, or at least you can see where you’re at when treatment ends and make the decision then.

    #4963

    sooxie
    Participant

    Thanks for weighing in, Colleen and Graffin.
    Just finished #13–hoping that one of these days I will feel something that indicates it’s working. Crossing my fingers…

    #4965

    GraffinLA
    Participant

    Do you know how many pulses you’re getting per treatment/how much of a percentage of motor threshold they’re giving you? After two weeks my doctor did 5,000 pulses a day at full power which may have accelerated things a bit.

    • This reply was modified 9 years, 9 months ago by  GraffinLA.
    #4967

    colleencasey
    Participant

    Sooxie:
    I hope you experience an uplift soon, but try not to fall into discouragement. You have more than 1/2 of your treatments ahead of you and the effects may surface during but possible not till after treatment. Sending my best.

    #4968

    colleencasey
    Participant

    Interesting point Graffin about the number of pulses and the intensity of power configured when doing the motor threshold. When I returned for boosters a year later the doctor increased the percentage of the MT when he checked the original MT and I need only two treatments a year. Do you feel the increase made a difference in regard to your treatment outcome? Sounds like a question for consideration Sooxie.

    #4976

    sooxie
    Participant

    I will ask about mt and #pulses tomorrow. Two things I have noticed: 1) interacting with people seems easier lately, like I’m not ‘roboting’ thru acting like a human. It seems more organic and relaxed; 2) I don’t feel at such a loss when alone. I may still be filling my time with reading, writing, and tv–but connections btw activities are more fluid, smoother. Tomorrow is #15–hoping for continued progress.

    • This reply was modified 9 years, 9 months ago by  sooxie.
    #4978

    NeedMoreCowbell
    Participant

    Hi Souxie! I’ve went through TMS a few years ago and I’m presently on my second round and today will be my 15th treatment. It IS the little things we start to notice at this point and that is a very good sign. Feeling a little relaxed, able to make decisions easier, slowly feeling a little more in control – the things most people take for granted become small steps we can use to build on that will help us get better. Do you journal? I started taking notes the other day about my progress, so I can see the actual changes and remind myself that I can feel better.

    My treatment doc asked me if I’ve become more active and I told him not quite. The difference is I want to and wanting to do things is a marked improvement in my state of mind. I’ve planning forever to clean the house over the weekend, but never seem to get past the basics. This weekend I will hope to go from wanting to actually doing. I do feel better, but I can relate to your impatience – I want it know!!!

    Take care and let’s hear for #15!

    Best,
    NeedMoreCowbell

    #4980

    Greg
    Participant

    Wow that is fantastic you are feeling some results Sooxie!
    I am so happy for you.

    Needmore, mind if I ask how many treatments you had on the first go around and how many you are getting now?

    I am also thrilled to hear you are having some positive results.

    #4981

    NeedMoreCowbell
    Participant

    Hi Greg, thanks! The first time I had 36 – 30 daily for five weeks and six tapers spread over two weeks. That treatment provider used NeuroStar. The clinic I go to now includes the same amount of treatments, but the tapers are spread over three weeks. It’s in the research area of a hospital. The program involves having functional MRI before, during, and after the treatment is completed. They use the first set of scans with a MagVenture TMS machine to navigate where to put the coil. It must be very different as the technicians have to fumble around to get the coil situated when it was much easier with NeuroStar. It’s quite fascinating, but it’s not the relaxing environment of a NeuroStar clinic. They’re trying to figure out if there are markers that will tell them who have success down the road. The Scientist/Clinician is attempting to pull together information to make a case for maintenance, among other things.

    Best,
    NeedMoreCowbell

    PS: Sooxie – sorry I spelled your name incorrectly in my response to you 😉

    #4985

    Greg
    Participant

    Very interesting and thanks for sharing.

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