Viewing 28 posts - 1 through 28 (of 28 total)
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  • #34258

    entenmk
    Participant

    Hello all,

    I recognize each individual is different and TMS works for some and unfortunately not for others. Tomorrow (June 28) will be my 6th treatment and the only thing that is keeping me optimistic is the TMS tech and reading stories of success. Still feeling quite pessimistic and overall just tired and groggy. Its hard to enjoy things, and work just tires me out where I just crash at the end of time. I think its the depression talking – its like it shades everything in this cloud of doubt and lies. Its hard to believe that sitting in a chair and having this machine send tapping pulses into my brain is really doing much. Each time it goes I just think – please help “refresh” my brain. Anyways, I’m trying to have hope and “push through” the doubt in my head that says I’m wasting time. My insurance has approved 36 treatments, and I plan to make all sessions.

    If anyone can relate to these treatment anxieties please let me know and I will try to keep updated week by week on the treatment.

    Thanks !

    Kyle

    #34260

    junebeatle
    Participant

    Hi @ Entenmk, TMS was my last hope! I was so depressed, suicidal, & unfunctional…crying sometimes 6 hours a day. I was so unsure it was going to work because I was up, then down, even at 36 I was a mess. My psychiatrist added and additional 10 treatments & it worked wonderfully. I’m even thinking about returning again to see if I can quit Valium. Hang in there, when it works it’s a miracle!

    #34261

    entenmk
    Participant

    Thanks for the kind words @ junebeatle. Yesterday was interesting as I actually had some darker, more depressing thoughts and feelings. Today though I feel better, and have more energy- actually more interested in doing things, which is a plus !!

    The only negative I’ve noticed tho is it seems my anxiety is higher- kind of a tightness in my chest. I’m getting bilateral treatments done so I pray that this goes away or I can find I way to help it. I will talk to tech tomorrow .

    Overall tho, mood seems a bit better.

    Thanks

    #34266

    entenmk
    Participant

    Just had treatment #9 today. Again, more energy, but for sure more activation. The tech said that typically she has people sleeping better and not worse- however I can say this is not true for me. Discouraging for sure as I don’t like feeling activated.

    They are also doing bilateral treatment – did anyone else has this experience and did it go away ??

    Thanks.
    Kyle

    #34267

    junebeatle
    Participant

    @entenmk, Yes, I did experience that. My week 2 was so bad some days I was only sleeping from 1am-4am & I also have a movement disorder that is activated by stress, so my movements were returning that were under control with Valium. Week 3 was so bad I told the psychiatrist I was going to give up because I was losing my battle to depression it was so much more severe, that’s when they changed some parameters & started more left sided treatment.

    I had some good days in there, but it was one tough journey! There was one day around week 4 I thought I was going crazy, like literally almost went to the hospital, my legs felt like there was an electrical surge going through them all day & I was on the brink of insanity. I even called my mom & started screaming at her for no reason telling her I was getting worse. My journey was up & down, it wasn’t until they added the additional 10 treatments after 36 the tears started drying up & I felt better days. Now I’m so grateful I did it & think to myself if this treatment didn’t exist I wouldn’t be here! Everyone’s journey to mental wellness is different, but I honestly had one hell of a trip to get there. Hang in there, I hope it works out for you. Are you expressing what you are experiencing with them? When I was sleeping worse (lack of sleep was one of the things that led me to severe depression) I told them about it. I also had severe, severe memory impairment. Last night I played Sudoku for neural plasticity, so it definitely works.

    #34268

    entenmk
    Participant

    Junebeatle-

    Thank you for your response. I go in for #10 tomm and then I’m off for a week for vacation. I’ve mentioned the concerns to my doc which he said to take melatonin. I’ve tried it but it doesn’t seem to do much.

    I’m interested to see if this anxiety calms a little during the week break. If it does then I know it’s the treatment and the docs gonna have to do something to help with sleep.

    I’ve been thorough with the tech who is very supportive but says she doesn’t have too many who experience these symptoms so that’s a little scary. Anyways – I will keep ya updated. Thanks for your response and guidance !

    #34269

    junebeatle
    Participant

    @entenmk, I’m a registered dietitian and would lean more towards Lavender oil capsules for sleep if it’s anxiety related (you can look up research as they are comparable to benzodiazepines) or possibly Saffron capsules (Life Extension makes a good one which helps both anxiety & depression) Melatonin is usually too high a dosage above physiological levels made in the body & honestly contraindicated in depression because it can make it worse. You could try them for relief. Tart cherry juice 8oz an hour before bed can also help.

    Have a nice vacation! Try to stay engaged as much as you can on vacation to relax yourself.

    #34270

    entenmk
    Participant

    Thanks for the support junebeatle. Vacation has been going okay- though today has been particularly rough as I’m feeling low emotionally. Like these lows come in waves, some days are better than others, but I can definitely say I never experienced these ups and downs till Tms.

    My anxiety is better and I don’t feel like I’m out edge all the time. I can understand some anxiousness, but I was pretty ranked up. This is kind of scary though as I start back on Monday, and if I get that all day, into the night edgy/anxious feeling like I have been I will be really hesitant to continue treatment as I’ve read some stories on here where that anxiety doesn’t get better and people regret not discontinuing sooner.

    Trying not to let the anxiety/depression get in the way of treatment but it certainly is bothering me.

    ThAnk you and stay well. 🤗

    #34271

    junebeatle
    Participant

    @entenmk, You’re right I’ve read those stories & was so scared to do it myself because severe anxiety is what got me into that depressive state. Everyone is different, but overall most people on here seem to respond well. Keep us posted, it’s your treatment journey. I’m sure someone else will respond on here too. If this doesn’t work out remember they’re are lots of other options, Ketamine, Psylocibin soon, etc. I also take Saffron post-treatments as I needed all the help I could get & it seems to help too.

    #34272

    entenmk
    Participant

    Thanks junebug… you said up above that when you mentioned that to the treating team they started to do more “left sided” treatments ? Did you possibly mean more right sided as that’s where I feel would be more beneficial for anxiety.

    I will talk with them on Monday and vent my concerns- if they can’t change up, or are unwilling to change protocol if the angst doesn’t go down then that’s gonna be a red flag for me… I’ll keep ya posted tho !

    Kyle

    #34273

    junebeatle
    Participant

    @entenmk, When I did my first 25 treatments we were mainly doing all right-sided treatment (I think left was 5min) because my situation was where my anxiety I’ve had well managed for 20 years went to insanity with extreme agitation, so they were afraid of stimulating me in the least bit. What they didn’t say was unbalanced treatments can lead to more irritability & anger (which was what I was experiencing) I’m not an angry person, so it was unusual & I also was so fatigued, way, way more depressed. The treating psychiatrist said maybe your wired a little differently and started left balanced bi-lateral and that’s when things started to get better.

    You are correct for anxiety it is slow pulse right sided. They should be doing bi-lateral anyways, most people need both so they don’t become too activated or too irritable. I did have mornings with panic waking up & thought that’s weird my Valium isn’t working…in the end it calmed down and 46 was my magic number. I didn’t think it worked at all until 36 on…I also cut daily Valium in half from 15mg at the start to 7.5mg today, Hoping to stop that eventually, but they want me off 100% before doing another round…that’s tough.

    #34280

    entenmk
    Participant

    @junebeatle

    The last week on vacation was interesting. I definitely get what they say when its a rollercoaster! I had days with hours where I felt really down, then I felt okay, and then I felt pretty good! This happened on random days throughout the trip. It was weird, scary, and frustrating all at the same time.

    The biggest concern though is the anxiety – its like a full body anxiety, and while it did go down, its only 50% better and causing problems with sleep. I don’t want to overstimulate myself. I told the treating team, and they are only doing right sided treatments this week. I hate doing that because I want to make sure I treat the depression – but I don’t want to cause any more activation -its very uncomfortable! I hope this week I can take care of self and try the left side again next week.

    I don’t know what else to do besides that – I just keep on hoping and praying that I will get some relief.

    Cheers –
    Kyle

    #34281

    junebeatle
    Participant

    @entenmk, Good news is the right side also treats depression! The magnetic pulses reach more than just the side they are treating, in fact bi-polar depression is only treated on the right side due to mania possibility on the left. I’m so sorry you’re experiencing increased anxiety, that’s an awful feeling too! Have they not been doing bi-lateral the whole time?

    Keep the faith, I hope in the end it works out. Remember some people get better post-treatment as well. And if this isn’t it, have you tried Ketamine? I’m sure you’ve already tried the medication merry-go-round.

    #34283

    entenmk
    Participant

    @junebeatle

    They have been doing bilateral – but that was still causing the increase anxiety/agitation.

    Thanks for the support – I have not tried Ketamine – though I would look into it for sure, especially the nasal spray – that looks somewhat promising…

    Thanks!

    #34286

    junebeatle
    Participant

    @entenmk How your treatment going? Thought about checking in to see how your doing.

    #34287

    entenmk
    Participant

    Hi @junebeatle

    Last week was all right sided due to the increase in anxiety. The anxiety has gone down thankfully and I started bilateral again this week. I’m continuing to hope it doesn’t go back up- though I would assume it will after a couple more sessions. Maybe I can get a few more in and then finish right side of the anxiety is too strong..? Hopefully my brain can use whatever it gets – it’s definitely being activated tho as I can tell I have more energy and such …

    #34289

    entenmk
    Participant

    @junebeatle-

    Just an update – last week I resumed with bilateral treatments. That puts me at a total of 20 with 15 being bilateral. All was okay, and then Saturday and into this week I’ve experienced another “dip” of low emotions and feeling much sadder and hopeless than before treatment.

    I’m trying to hold faith and finish treatments no matter what, but when I’m feeling this way it’s so easy to think that I’m causing harm and going to cause more damage. It’s a bad place to be in. I just keep telling myself to keep going – so tired of waking up with such heaviness and lack of luster for
    Life.

    Hope you are well and your continuing to progress with post treatment ! Thanks

    Kyle

    #34290

    junebeatle
    Participant

    @entenmk, How many total treatments are you to receive? I’m sorry you are having such a difficult time, do you see a counselor during this? I can say it really helped me along the process because honestly I kept thinking it was making me worse and wanted to quit so many times. One day coming out they did so many right sided in a row it’s like my brain was off, I almost hit a car pulling out that I totally didn’t see, tripped over a huge construction sign & almost fell to the ground (which was completely obvious), & then driving to my counselors office post-treatment hit the curb so hard turning right-I was convinced it was damaging me because I could drive fine before TMS.

    Only you know your body and can say continue the process. If you’ve made any progress during it at any point it is most likely going to work, but it takes time. I personally was still crying & suicidal at 36, it wasn’t til they added an additional 10 that I started laughing again & the tears dried up. I will let you know I had to return for maintenance treatments once a week. I don’t know if it’s because my movement disorder that’s so uncomfortable all over my body fuels the depression, but it worked again.

    My psychiatrist wants me to do another full round because he says then the intervals between treatments gets longer. For me I didn’t have another option, so I kept going. Medications made my movements flare so badly I had to go to the ER, Ketamine made me so agitated I was more suicidal post-treatment, and ECT doesn’t work for people with extreme anxiety. There are other treatments on the horizon, like Psylocibin and Deep Brain Stimulation, so always keep hope.

    I’m rooting for you! You could be a post-responder too. Or you may need additional treatments to get you back to yourself like I did! I also started a Day One app journal with a selfie to see my affect with the entry. It helps to reflect on the good days because bad days unfortunately still crop up once your brain has gotten sick. Hope this is helpful.

    #34291

    entenmk
    Participant

    @junebeatle

    I am approved for 36 treatments total. My goal is to definitely continue with and see how things go. Its definitely been a roller coaster for sure. Hopefully things will even out as I continue, but we shall see. I’ll try to hold on to the truth that things aren’t getting worse- that’s just my feelings and they are obviously skewed for sure especially under the grip of depression!

    I’ll keep you posted.

    Thanks!

    • This reply was modified 1 month, 3 weeks ago by  entenmk.
    #34293

    junebeatle
    Participant

    @entenmk, I agree a “roller coaster” is the best way to describe it! It’s certainly not an easy process and your brave for trying it. I don’t really think how difficult the journey is made apparent by Neurostar advertisements or even the facilities. You just see the glowing people at the end & think oh that’s going to be me. Then you start in and think 1 day I’m better, another day I’m now not sleeping, another day I’m more depressed. The dip is especially difficult and yes I had more than 1 as well.

    In the end it was worth it all! Do you play any brain games during treatment or after? That really helped me a lot because I was so bad I thought I had dementia, when I could do long division again post-treatment I knew something was changing. Elevate is a good one, Brain HQ, or math booster. My doc told me that improved outcomes during treatment & 2 hours afterwards.

    #34294

    entenmk
    Participant

    Hi @junebeatle-

    And the process continues. Having quite a bit of irritability today. Frustrated , sad, emotional… just tired of feeling this way…

    No I have yet to play any games but it sounds like a good idea to help keep the brain going and work on those connections ..

    Continuing to pray for strength

    #34296

    entenmk
    Participant

    @junebeatle-

    Continuing on in this process. It’s certainly not easy- I have to say I have felt worst throughout this process… more lows for sure – just praying that my brain will get back to its prior state… I’ve got 10 sessions left and it’s just tough to have the faith that it’ll get better

    Kyle

    #34297

    junebeatle
    Participant

    @entenmk, I sure hope you do, your in the home stretch where it should lift either during these or post-treatment (my husband didn’t think it worked until afterwards for him) The supporters on this forum are what kept me going. I remember one day closer to 36 I had my sons flag football practice & literally cried all day up until his practice. I went on this forum and talked to a girl who was doing WAY better in her treatment than I was. I talked to her about my lack of progress & how bitter I was that my attempted suicide was unsuccessful because I was left with a broken brain & nothing but crying all day everyday. She told me she was where I was once & that she knew I would get better. She said even if they’re small steps. I dragged myself to get dressed & went to his game, did my best to pay attention.

    I’m telling you this because I was where you are. I think the fatigue of the process, the constant headaches, & all the neurological changes taking place just wear you down. This weekend I celebrated my 12 year olds birthday, planned it all, talked to parents, etc. Just this past January I was so sick I couldn’t do anything for my 7 year olds birthday except take him out to eat (crying through most of it) & I remember when he was like “I’m not having a party with friends”

    Today I’m reading a 700 page book “The Gold Finch” & playing Sudoku again. In December when I was first put on Valium I thought I’d never comprehend anything again..I remember buying a Sudoku book and just crying because I couldn’t even understand it or retain #’s in my memory enough to figure out the next row. Am I back to where I was? No, but I took a really big fall. Can I experience joy, am happy with the progress I made? Yes.

    One last thing I work with an integrative doctor and after TMS I found out my Vitamin D was low, B12, & carnitine levels (all these are involved in depression & brain health) Those are helping with my fatigue. I also am low in testosterone and didn’t realize that plays a role in women’s depression too because it helps serotonin/dopamine receptors in the brain, so I got a SottoPelle hormone pellet in my hip and that’s helped quite a bit more. If the TMS can boost you enough maybe you can work with a doctor to look at other avenues that may help your mental health (hormones, gut health, deficiencies, etc) Remember if this isn’t it, something out there is. Keep pressing on my friend 🍀

    #34298

    entenmk
    Participant

    @junebeatle

    Thank you for your kind words. Yesterday morning I was feeling decent and then had treatment and now this morning I’m back to not feeling that good. I put on a face everyday at work that things are okay but inside they aren’t. It’s a frustrating and scary feeling.

    I’m looking into nutritional therapies too and taking a few supplements to help on this process. I also have an appt scheduled with a naturopath next week to assess some things.

    I appreciate your support and will keep you updated …
    Thank you
    Kyle

    #34300

    junebeatle
    Participant

    @entenmk,
    Hi, Any progress yet? My kids went back to school today and I’m my way out for my booster. Thought I’d see if it turned around for you.

    Hope your feeling lighter & brighter:)

    #34303

    entenmk
    Participant

    Hi @junebeatle

    Thanks for checking in. Last couple days my mind has been fairly calm. It hasn’t been the crazy ups and downs , but I can’t say i necessarily feel “better”. Probably about the same as when I started. Maybe a little more energy and less brain fog but I still wake up with quite a bit of negative thoughts about the day. I was hoping to feel a little better but we shall see- 3 more sessions left… the tech said they have not been successful with insurance approving more sessions …? I can ask again but it’s looking like 36 is the number and if it doesn’t improve then I don’t know … ketamine May be next

    I appreciate your help along the journey though and I’m glad your feeling better !

    Kyle

    #34319

    entenmk
    Participant

    @junebeatle

    Well- I’m done. I can’t say I feel much, if any better. Sure, something could happen, but I’m doubtful. I’m just relieved it’s over- it was not a fun experience. Again, I’m sure it works for some people, but it’s looking like a dud for me. Biggest thing is I just pray my brain completely heals as I swear every time I had a treatment it seems my mood would dip later in the day and into the following day. It was a tough couple months.

    I’m glad you are doing well and thank you for all your support. 🤗.

    Stay blessed- Kyle.

    #34320

    junebeatle
    Participant

    @entenmk,
    You’re more than welcome! Depression is awful & it’s always good to have support from people who know how bad it can be. I’m bummed it didn’t work for you, but try something else for sure. You don’t have to suffer something will work to mend those neurons. Keep in touch & let me know when you do find something to lift your spirits;)

    Best of luck,
    Junebeatle

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