May 16, 2016 at 6:50 pm #5430
I am on my 8th TMS treatment and I have had confusion, difficulty concentrating, slight stuttering, difficulty getting some words out. I have let my DR. know and I am wondering if it may be interfering with the medication I take (Effexor, Lamictol, Trazidone). I did not have treatments on Saturday and Sunday. By Sunday my head was clear and I was able to concentrate and multi-task again. Has anyone had anything like this before?May 17, 2016 at 12:39 am #5431
Yes, I’ve experienced this. It takes me several minutes to get re-oriented after the treatments. It was much more intense when I first started. I’ve finished my 6 weeks and am now tapering down. I still feel like I need to collect myself after all that stimulation has been shot into my brain.
I found that just sitting down and waiting for a while helped me before I have to leave to drive home. I hope things get better for you.May 17, 2016 at 1:55 pm #5433
Thank you so much Keep_Hoping for replying. I was beginning to think that I was the only one. It was really making me nervous.May 17, 2016 at 8:16 pm #5434
There are a lot of things I discovered about tms that weren’t explained to me or that I never read about. I found this blog after starting my sessions. I experience a lot of pain every time I go. I’ve finished the 6 weeks and the pain never decreased. I also thought that feeling better came gradually. Now they tell me I may not feel better until a month or more after I’m all done. That was a big let down.
So be ready to ride it out. It’s a real commitment on your part to go through this. You must be really determined and that’s great. I hope you see improvement soon. That’s what we all want.May 19, 2016 at 12:38 pm #5442
They just told me yesterday about not feeling better until a few weeks after also. The analogy they used was, it’s like having to rest your brain after, letting it heal, then seeing the results. I agree on the pain. I wasn’t expecting that. My “analogy” is, it’s like getting a small tattoo every day. You grin and bear the annoying pain for the end result. Only people close to you know you’ve had it done. LOL
Now I have slight dizziness. I will be glad when it’s over. It’s tough working full time, going to the office, going back to work, and then raising kids. I know it will be worth it, but right now I’m just overwhelmed with having to do it. I’m so glad I found this site. I wish there was a local group by me. Have you noticed any improvement? Are you sleeping better, have more energy?May 19, 2016 at 10:28 pm #5444
Hi Mass: Welcome to the site.
Keep-Hoping is right. There is a lot to discover about TMS throughout the process. I told my psychiatrist Tuesday, as I reflect back on my TMS journey, starting 5 1/2 years ago, I never realized at the time of the initial treatments just how challenging the unknowns were. And fortunately or unfortunately (depending on how you look at it) that is innate in the treatment. The brain is complicated but having this as an optional treatment gives us hope and another chance to improve our brain health (just admire my psychiatrist for changing the terminology to a positive!). I worked throughout treatment too but changed my initial schedule to work 8 hours and then go to treatment and then home to bed. Any possibility that may work? It was much better than going to treatment first and then going to work. I had to drive 2 hours each way to treatment so the middle of the day didn’t work with my schedule. I was so tired after treatment the two hour trip home was difficult. If TMS waits to work (so to speak) till after treatment and it does work, it is well worth the challenge of waiting. Life changes dramatically. Hang in there. You have support here and lots of knowledge from people who are now going through the treatments too.May 21, 2016 at 10:13 pm #5447
Wow, your plate is full for sure. It really is hard raising kids while dealing with depression and the daily treatments. You are so strong and determined. Do you realize that? If not remember that I told you that. 😊 It’s so helpful to have even the slightest bit of encouragement during this time.
Have you been feeling any better after the treatments?May 24, 2016 at 5:59 pm #5449
Thank you for your responses. I think I am over the “hump” now. I no longer have confusion or stuttering. We ended up decreasing one of my meds and that seemed to help. I had a feeling it was interacting with one of them. I have noticed that I am accomplishing more than I used to. Which feels strange. Some days I just go, go, go..I like it though. They have also shortened my “pause” time in between the pulses, so I spend less time in the office. I am finally feeling a bit hopeful about all this. It’s so nice to know that there are folks out there that know exactly what it’s like. I really appreciate it!May 25, 2016 at 1:27 am #5450
That is great news Mass. Here is too continued movement forward! Please keep us posted through your process. It is helpful and encouraging to others. It is hopeful to think of your potential future. It will be interesting to see how long you notice improvement and what it is. Thanks for being a part of and contributing to this forum. We will look forward to future updates!May 26, 2016 at 3:10 am #5470
This is encouraging for me to read as well! I too am a mom trying to get this done and raise kids at the same time–through the now several dips I’ve encountered, staggering lows–and it has been so crazy. I’m adding on my six that I was saving for boosters, as I am just now finally starting to feel like maybe this is working a tiny bit. So today was #32.
Colleen, not sure how to get this to you exactly, or to start a new thread, but my email is email@example.com. Please contact me when you can! Thanks, ErinMay 26, 2016 at 5:50 pm #5471
Erin. I sent you an email. At first I included a period at the end of your email address. I corrected it and it should have been delivered to you. 😊August 25, 2016 at 12:55 am #5540
Hi everyone. I am so glad to have been referred to this forum and have all of you to share with and talk to. Having others who understand what I’m going through…I’m so grateful…having that support. I had my very first TMS treatment today. Oh boy…it was a lot worse than I was told. Very stressful, very painful! Thankfully I now have day 1 behind me. I can relate already to some of the experiences I’ve read. I do seem to have trouble thinking of things I want to say…and that is frustrating. It is sporadic though. So I hope the confusion or difficultly thinking is not permanent. I also experienced some discomfort after the treatment…like what they DO tell you, and was a mild headache and mild sore scalp. But thankfully tolerable. I had some mild dizziness, also very little on and off and also very tolerable. Something else I felt that was disturbing…and it was felt during my treatment as well…it was some pain to my left eye and left ear. I told the Dr and Coordinator. And the Coordinator told me, she had never had anyone mention they had felt any ear pain. So that was a new one for her. That part was not at all mild. My ear hurt all afternoon through the evening, and really scared me, because I also had sensitivity in my ear to any sound, both when I would speak and when I would hear any other sounds, like a phone ringing or my dogs barking…ouch!! I learned at the doctors office today for the FIRST time, they never told me PRIOR to today, that there is a potential risk of some hearing loss, even if you wear the ear plugs they give for every treatment. So learning that initially terrified me, then the ear pain made that thought even more concerning. I will be discussing everything I’ve gone through with the Coordinator tomorrow. I ended up dampening a cotton ball, putting that in my ear (as I’ve also been feeling so much itchiness). The cooling of the dampness, and filling my ear with some protection to sound…helped a great deal. And it is a lot better, still a bit sensitive but better. I will share anything new I may learn, in case it could help anyone else experiencing the same. Has anyone else felt anything like this…ear or eye pain?August 28, 2016 at 2:32 pm #5541
Welcome! It is great to reach out for support when we experience something new, (which can be frightening), but with the potential to improve the quality of our lives.
I never experienced the ear pain, the eye twitching yes. This treatment has so many variables because we are all so different. You are right on target to keep communication open and on a continuum with your coordinator and doctor. They can access research and experiences with other doctors and clinicians more readily than we can. Hopefully the scalp pain will lessen as the first week of treatment concludes.
I had a difficult time with a surge in negative childhood memories and after two weeks of treatment my doctor recalculated the motor threshold and made a slight adjustment to the placement of the coils. It made a great difference in both the eye twitching and a reduction in the memories.
Thanks for sharing your experiences. I am sure the info will be helpful to others. Stay connected so we can offer support if needed. Good luck and hope to hear from you soon.
ColleenAugust 28, 2016 at 6:08 pm #5543
I am really happy to hear from you…thank you so much for the reply. Wow…what you experienced with memories is something I hadn’t heard about yet, and it IS so interesting how many variables of responses that can happen from these treatments. I hope it wasn’t scary and glad you got through it ok and they were able to make adjustments for you, so you no longer had to experience those memory surges. Thank you for sharing your experiences, and for being there to help. I am thrilled to report day 2 was sooooo much better and barely felt the discomfort. It went so fast and was done before I even got to think about it. Also day 2 had a lot less side effects. Did feel, ‘during the treatment’ some ear pain and struggled with ‘thinking of what to say’ when I was speaking with my Coordinator. But all this was better shortly after the treatment, later that evening… NO EAR PAIN or CONFUSION….yeah!!! The scalp soreness and headaches is barely there now. And even more exciting…I had an AMAZING rest of the day following…and felt really really good! But as I’ve experienced with the depression, you need to be cautiously optimistic when the good feeling comes, as it doesn’t usually last. I have learned to now THOROUGHLY enjoy the good feeling, even not knowing how long…it still feels amazing to feel good and I am so very grateful for those moments. I also go to Acupuncture…which is so helpful. I would highly recommend for anyone experiencing anxiety and it can help get through the treatments. Day 3 was much more difficult…and after day 2, unexpected. The Coordinator upped my dose which is why it was harder…stronger pulses, led to it being more painful. It was a bit of a let down, after getting through an easier day just one treatment prior. But I know this is all part of the journey. One thing I wonder and will be asking about on Monday…why they chose 20 min, actually 17-1/2 min. treatments for me. I know the RX or recommendations for how the treatment is administered to each individual will be different based on their needs. And I cannot complain for having shorter sessions, as that is less time to deal with the discomfort, but I just want to feel reassured that less time will still be just as effective. That is my only concern. I am sure they will put my mind at ease when I ask, but was wondering if you have heard about variances in amount of time during each treatment. I’ve read they can be up to 60 minutes long. So I just want to understand the difference in time. Sorry…once I start writing…I can go on and on… Thank you Colleen…I am so appreciative for you being there to talk.August 29, 2016 at 12:52 pm #5544
You are welcome. I believe that if we can just “pay it forward” when we have been helped, then the world will be better for it.
Do you know what company brand the machine is that your doctor’s office is using to administer treatments? I have treatments with the Neurostar Machine and know they have a definitive protocol for the FDA approved TMS Treatments administered for MDD which is supported by clinical trial documentation. My doctor complies with these protocols when treatments are administered.
I would start there when you are talking with your doctor or coordinator and ask the questions you raise: Does less time treatments are administered affect the possible outcome, is there a manufacture’s protocol for the treatment of MDD, what is it, are they using it, etc. Because this is a new science, some doctors are experimenting with its uses and outcomes. You want to be treated with clinical trial outcomes supporting treatment recommendations and administration. You are paying for that as well as clinically professional care from your doctor and her/his staff.
This is a medical treatment and it will encompass a wide variety of responses as you proceed. It will take time for your brain chemistry/neurology, etc., to adjust and respond to treatment. It can be an emotional roller coaster ride, so day to day can be trying, but if this treatment is effective, it can be life changing. Use your supports as it can make a difference in tolerance and encouragement.
Good luck and let us know what you find out. Thanks for your contribution.
ColleenAugust 29, 2016 at 6:04 pm #5547
Hi luvmipuppy. I like how you wrote “cautiously optimistic”. That is how I felt also. I did experience the left eye pain and I also had headaches. I did eventually “get used” to the feeling. After a while I was irritable and fidgety so they switched my treatment to the right side which had very little pain. I completed my treatments a few weeks ago and it goes by really fast. I never had a big Ah Ha moment where life was suddenly depression free, but I can say that I no longer have ups and downs. My mood is continuously stable which is a great relief. I no longer sit for periods of time dwelling on death or negative thoughts. I have even decreased one if my medications a bit. I have also been working at changing my negative thinking. It was well worth going through the treatments. I don’t think anyone can explain the initial mapping until they have experienced it. Not fun at all! Hang in there!!August 30, 2016 at 2:53 pm #5551
Hi Mass. Thank you so much for sharing your experience 🙂 So happy and excited to hear the treatment worked for you! I’ve read about what you mentioned, where there wasn’t a defining moment that you can pinpoint, when it actually changed for you. But I hear ya! There is so much appreciation for a stable mood, even if the change may not be dramatic. I think after all the time we feel depressed, we can feel soooo good for the little changes, and for no longer being in those deep dark holes. The depression moments are so awful, that any moment feeling better is a blessing. I am so thrilled for you, that you feel better, and how amazing it must be to reduce one of your meds. That is one of the hopes I have, to reduce the ‘side effects’ I’ve been experiencing for years. Congratulations on getting through that hurdle as well. Glad to report the left eye and ear pain is minimal from where I started on day one and helpful to know it can be a normal reaction. Today will be day 5. During the treatments it is there but so much more tolerable. And after each treatment, headaches are also minimal and managed pretty well with Ibuprofen. It has been a roller coaster, each day a different experience, one day terrible and painful, another day a bit better, another day easier and mood was great! Another day mood was awful, and yesterday much better again. On the good days I feel so encouraged and hopeful for a positive result. The bad days I’ll admit it is hard to keep the faith, but having a glimmer of hope is what keeps me motivated to keep going. Thank you again for sharing, great to talk with others who completely understand. Wishing you continued success post treatment. You’ve given me some much needed encouragement. And I hope to chat with you again soon.August 30, 2016 at 4:01 pm #5552
Hi Collen. I agree…helping others through our experiences is very rewarding. Knowing all too well the deep pain that comes from depression, and being there to support another going through it…I feel honored to be helpful in anyway. And I feel blessed to have all your support while I am going through this. It’s a new opportunity that’s been opened for such a ‘cutting edge’ treatment, in some ways it’s pretty exciting to be a part of it. The doctors’ office I go to also uses the Neurostar. I’ve read each machine has its own clinical protocol. And you hope when you ask the question, it is actually what is being followed. It would be important to trust your provider, for sure. But there is a glimmer of wonder if what you’re being told is the 100% truth. Is there a way to really know for sure. Before posing the time of treatment question to them yesterday, I had asked about treatment protocol the other day and was assured they are following what is recommended. I also asked if they ever use the machine for ‘off label’ treatments. I was told yes, the protocol is followed for my treatment for MDD and anxiety. And yes, some off label treatments are used for other conditions that the machine is not yet FDA approved for, but they have found helpful in many patients. Doctors have used medications off label, and even in my own experience, have taken certain meds for things other than what they are FDA approved for. I’m cool with that, as long as it helps the issue. I guess though in this case, we are not talking about a minor copay for a medication, that is affordable. This is a HUGE expense, and it is crucial in this instance, it is being used correctly for what it is treating. Oh, I wanted to update you on the confusion side effect. I do feel it during each treatment, and for some time after. It seems to get better as the hours pass following each session. I was also told to me that it is completely normal, and with time it gets better as your brain gets used to what they equate to a workout. Still feeling hopeful…and would love to stay in the most positive place possible throughout this journey. Some days that takes more work than others. Will keep you posted on how things go, as I proceed through my treatments.August 30, 2016 at 6:21 pm #5553
You have a great attitude and I am sure others will benefit from your example and insight.
I agree about off label use. If it wasn’t for bilateral treatments I would never have had my ADHD and my migraines resolved. TMS unexpectedly on the right side did that – I don’t need medication for either anymore.
Google Alerts – TMS, reveals daily the clinical trials that are being conducted for so many neurological issues that have not yet been FDA approved, but show promising results for many others uses for TMS. It is encouraging.
I agree the cost is a huge commitment and risk. Your post reflecting the fact that you do ask questions of your doctor/TMS coordinator is vital as many people hesitate to be that assertive. Many of us when experiencing depression feel reluctant to do so. Thanks!
As you report on the issue of confusion and your experience, it reminds me of my own curiosity about what is happening to my brain during treatment. Would love to have a camera in there.
Thanks for sharing. This is very helpful.
Will look forward to your future posts!
ColleenSeptember 2, 2016 at 1:32 am #5559
Thanks so much Colleen…that really means a lot! I feel blessed if anything I can do, contributes to helping others going through this. So great to hear the bilateral treatment helped you, and you’re now better without medications…yeah!! That is awesome!! I like what you mentioned about Google alerts and keeping up on new studies on other uses for TMS treatments. I actually tried signing up for the alerts…and not quite sure I did it correctly. So far haven’t received any notification via email that I signed up for them…hmmm? lol I would love to keep up on that information. Just completed #6 and remarkably, although still uncomfortable…I am much better able to tolerate the discomfort. Still get that bizarre feeling of confusion, or having trouble thinking of the words I am saying as I talk. I just find it more work to think during the sessions. And for a little bit after…but it does dissipate as the afternoon turns to evening. I do wonder as you mentioned…what is actually going on in there…(in our brains, during the session). As long as these side effects are temporary and get better…knowing that makes it much easier to deal with. I will continue to post and share my experiences with the treatments. 🙂
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