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Hi there, AprilJuneMom!
I am so thrilled that TMS worked for you! It is going really well for me, also. I am exactly halfway through. I finished day 15 (of 30) and will officially be on the last half of my treatment tomorrow (Tuesday). I am feeling just genuinely good, and I’m so hopeful for what these last 15 days will bring.
However, I’ve noticed some things physically that I think may be caused indirectly by the TMS treatment. I hesitated to ask them on here because I didn’t want to give anyone any extra insecurities. But TMS is amazing for me, and as someone who finished it with continued success, I’m wondering if you experienced these as well, or if you know anyone else who may have.
I’m noticing interesting hormonal irregularities. Basically, I feel like I’m in middle school again. (Yikes!) My skin is constantly oily and I’m getting breakouts regardless of how well I’m now taking care of my hygiene. It’s the same with my hair. In all fairness, my hair is both fine/soft, and thick, so it has been naturally oily for my entire life, and my skin is somewhat the same. But this is a lot, even compared to that. My menstrual cycle is also way off. By about a week and a half. (There is absolutely no chance of pregnancy, btw, just in case you were wondering.)
I also have had extreme fatigue since the beginning of week 2. I’m starting week 4 and while my sleep is longer and better quality (a definite win!), my fatigue has only let up a little. I also have nausea and a really dry mouth most of the day.
I know for sure that TMS won’t cause these issues directly because it is not systemic. But all of these feel exactly the same as when I first started my meds several years ago. I talked with my doc today and he and I are pretty much on the same page, thinking the TMS is working well and my meds are now just too much/too high, as a result.
He reviewed (all 4 year’s worth of) my charts after I left, and is going to discuss things with me tomorrow (Tuesday). But I’m wondering if you experienced any of this earlier on in your TMS journey. If so, was any of it relieved/eliminated by med changes/eliminations?
Did you experience any muscle twitching/spasms during the actual treatment (when the machine was on you)? I only rarely get it. In the 15 treatments, I can recall my eye/face twitching 2 times. Until today. Everything seemed to hurt today. I also had a couple muscle spasms in area on the front side of my shoulder. I have chronic pain from a joint issue, and even that is doing GREAT since starting TMS. I rarely have spasms in that area due to my joint, but it is 100% possible/likely. I’m almost sure it isn’t a result of the TMS, but I try to keep an eye on pain synptoms or locations that are outside of my regular. If you’ve never had anything like this, then most likely, it is just my joint issue choosing to be annoying.
Again, I’m do glad it worked for you and that you continue to find relief! If you have any insight on any of this, I’d appreciate the feedback. My doc is great and I fully trust him. But I don’t want yo raise alarm bells for no reason (joints/spasm). And the hormones can be a weird thing to discuss with guys for more than about 2 seconds. 😉
I remain hopeful and welcome any feedback/thoughts/suggestions you might have. Thanks for reading!!
Hi JuneBeatle,
You’ll be fine in the end. I promise. I have been in the trenches with PTSD. I am one of those survivors. It was a “jump from a bridge” or “overdose on (fill in the blank),” but it was the same intention and, but for God’s mercy, would have worked. I’m not going to give the details on that right now. For my own peace of mind, I don’t give those details to most people especially to people who are feeling the way you are. It isn’t your fault. But I never want to give any new ideas.
Even after it happened, I was mad for like a year that it didnt work. My life just…resumed. But now…over 7 year later, and much counseling, hard work, tears, and support I tried to push away, I am beyond grateful that it didn’t work. It took me a while to get there. But I’m so thrilled that I get the chance to live the life I’m living. I have a ways to go before I’m where I want to be, but if it had worked, I’d never get the opportunity to be even where I’m at now.
The thing that really changed a lot of things for me was my mindset. Again, I’m not saying you’re not trying because we all have different roadblocks. From 2011-2012, I went to a DBST group. For me, it made things worse. I was always hughly irritable and anxious and the next few days were very depressing. I’m never irritable. Even on my period, in able to rein it in most of the time. So when I was constantly irritable, I had to take a step back and reevaluate. By October of 2012, I realized what the problem was for me.
Now what I’m about to say is in no way intended to be negative toward DBST or any other depression support group. Their intentions are good. But it was never something that was going to to work for me. I realized it was why I wasn’t able to get out of my own head. In fact, I metaphorically grabbed a shovel and buried myself deeper in my own head during that year. To be honest, that year, my entire life revolved around my diagnosis. Meds, bad weeks, mood, anxiety, etc. It did not work for me because (a) it put the focus on my diagnosis and how bad everything was for me and the other there and (b) I never heard success stories, even from people who had been treating their disorders, supposedly, for multiple decades. That really got to me. Again, this is just my story, my example, a precursor for the point I’m about to make.
Once I recognized that, I knew that if I didn’t change something rapidly, I was just going to become another PTSD statistic. I decided a couple weeks later that it was time to change. I noticed that people I knew with mental/emotional struggles, whether at DBST or in my regular life, “became” their diagnoses. I know it is easy to do. I did it, too! But when I shifted my mindset, everything changed. I made two simple (not necessarily easy) changes that continue to shape and grow me.
1) I am not my diagnosis. This label I’ve given has ONE purpose: to define what I’m dealing with so I can decide how to treat it. In all fairness, you can’t put a cast on a heart attack, nor would you put a scraped knee in a sling. And my diagnosis belongs in ONE place: the charts/records at my doc’s office.
I do not need to keep my label on my mind at all times. It in a struggle to work through, but in no way is it a part of me. Rather than the labels, I chose to focus on wellness. I don’t want to think about mental illness. No, I chose to focus on mental health. Same category of medicine, different mindset for patients. I made my life from then on about mental wellness. I was no longer willing to be a victim of PTSD. And even now, I don’t like the term “survivor,” personally. I’m not simply surviving. I’m not just slogging through each day just barely making it to the end. I am not a victim. I’m not simply a survivor. No, I am alive. I’m living my life.
2) I eventually left the group I was attending in the second week of January 2013. I told everyone why, and that they may see me back in the distant future, if I met a major personal goal I had. I alluded to it, but wanted to keep the actual goal a secret so it would have a bigger impact when/if I came back.
What I didn’t share was that my goal was to become the example of success I didn’t see, the one I longed for, while I was in the group. It was important to me that people can always have hope to grab onto, no matter how loosely. I focused on getting mentally well, strong, tenacious. Only then, would I be able to be a beacon of hope.
What’s my point? Do not become your diagnosis. Why do we walk around saying things like “I’m bipolar” (which I’m not, btw, so I have no specific advice on that, though all of this can apply, generally) or “I’m anxious”…? I have never heard anyone say “I am cancer” or “I am high cholesterol.” No, those are thing people say they have, and it is implied that they are working to correct the issue. Let us not make ourselves hurt more deeply by letting the diagnosis become our identity. Please hear my heartbroken plea. We are all more than the sum of our past.
And, my other point is not necessarily to set a major goal for yourself, but you can if you want to. That’s up to you, though I do feel like you have enough to get through already. No, rather, try to focus on one small win each day. I would physically write them on my calendar at the end of the day. I’d encourage you to keep track, but if and how is up to you. Mine started off so small that I really thought they didn’t matter and even that some were just stupid. But I decided to just write down one success each day and see how many things I had at the end of a week.
For example: I looked back at the calendars (which I still have) and the first week I ever did this, I wrote things like, “Took a shower” or “Walked to mailbox”. It’s ok to write the same thing a few days in a row. I did. Little wins. They matter in the grand scheme, when you reflect back, years from now. They also matter on a day-to-day basis. You can see that you were at least capable of *something* that day.
I’m not telling you to leave your group, btw. That’s just my example. But hopefully you can take some thing away from the stuff I wrote after that. I’m not sure if this is helpful, but I hope it is, in some way.
And thank you. I think it’s time to see if that DBSA group is even still runnning, and either visit that one or a new one if it isn’t, so I can share my story. I plan on going once, only. But I want to be able to give hope to at least one person there. So Thank you for helping me see how strong I’ve become and my ability to share a message of hope, now.
I hope this helps. You got this!
Hi JuneBeatle,
Oh my goodness! I hope some of what I wrote above didnt make you feel like i was forcing you or implying that you werent doing a good enough job. I surely wasn’t! I’m so sorry if it came across that way. I just wanted to shine a beacon of hope. Please forgive me of my words made you feel worse or feel like you aren’t doing a good job. We are dealing with different things and have different daily lives, so there is no way to accurately compare one person’s “good job” with another. Theres no true scale by which to measure. Again, please forgive me if it came across negatively or made you feel bad in any way at all. That was not my intention.
I will say though, that while my specific cirumstances are different (like all of us), there is so much that I totally understand. I don’t share too much online because the internet never forgets. But if I can offer you some hope, if I can touch one person, then the vulnerability of it being online forver is worth it to me. So precious woman, this is for you.
I absolutely inderstand the health struggles. I was a competitive athlete for 13 years. I never went past the college level, nor ever had a desire to do so, but I competed most of my life up to age 21, so it was a huge part of my life. Just like you, I made a point to eat differently. I turned 30 recently and realized I haven’t had soda for 15 years. I gave it up to be a better athlete. So I 100% understand the dedication.
And then, over time, physical activity got harder and more painful. For years, I chalked it up to sore muscles, injured that I ignored or didn’t get fully treated (because I didn’t want to be pulled for a few games to recover), or simply exhaustion/overexertion. But it got worse. More painful and less muscle memory. Flexibility was getting worse. My athletic body just kind of gave out, so to speak, and it took many MRI’s, doctors, nerve blockers, medications, etc to find the problem. And still no doctor ever confirmed what the previous one had said. So I ended up with a handful of labels and none of them were correct. I found out 2 years ago that it is Degenrative Disc Disease. It is not actually a disease but a rapid deterioration of the spine/vertebate of time.
I currently have 3 vertebrae in my neck that have no gel/cushion between them, and are essentially bome on bone. I have 2 more that are bone in my mid back and 2 more that are bone on bone in my lumbar. Those 2 created a herniated disc directly below. So there becomes another vertebra with a problem. I’m not telling you this to have you feel sorry for me. I’m not telling you this as comparison. Pain is pain. There is no way or reason to compare. If it hurts you, then it’s valid.
So why am I telling you this? Because:
**You are not alone. In a very painful way, I completely understand physical pain and the emotions that go with it. I will deal with this for the rest of my life. It causes more and more issues as time goes on. I don’t want it to become a comparison of “who has it worse,” because I’m not here to invalodate your pain, so I’m not going to go into every single detail at the moment. But trust me: I absolutely understand…and thst means you will mever be as alone as you feel. I’ll deal with th so for the rest of my life, so easily 50-60 years. So for many decades to come, you have an ally. 😉Next up: mental and emotional health. I have PTSD. I was not in combat, which most people think is the only way to get stuck with this problem. I won’t go into all the gory details in this post, but my PTSD is sadly a result of my upbringing. I often feel like many people don’t understand. It causes both memory lapses and flashbacks, but both at the wrong times. Apparently they decided to switch places. It is hars to get people to understand.
But over the last couple years, I started to realize that maybe it isn’t so important that everyone understands PTSD in the same way I do. Maybe they will mever ditectly feel what I feel. But it became more valuable to have people see me go through night terrors and flashbacks, waking up, at 3 AM, fully alert and on edge…and stand by my side anyway. To hold me when I had screaming fits from nightmares I didn’t even know I was having at the time. To love me so deeply that, knowing they will never feel my pain personally, never stop supporting me. To me it’s lime they are taking a stand and saying, “I love you so much that, no matter what you’re going though, I wont leave. I’ll never give up on you, even though I cant understand it.” I find this to be more powerful than smhtjjng my illness can throw at me. Brcause even when I’m not strong enough, I have am srmy of people around me who will fight for me, guard me, and celebrate with me when another victory is won.
You may feel alone but you have your kids. You ate their champion. You are their hero, their everything, even if they dont always realize it or can’t express it. Your love for them is much more powerful than your illness. Even though we parents will never be perfect, it is the love we have for our kids that wins out.
So on that end as well, you ate not alone. 1000% I get it. Yet when I pause and reflect on where I’m at and whats going on around me, I realize I am utterly grateful. I have a house. I have kids and a great husband. I have a new set of parents who have never harmed me. I wake up and have food in the fridge amd the pantry. I have clothes to wear and I get up and get dressed every single day. Not always fancy and rarely put on a full face of makeup (mascara and gloss usually). But I’m doing it. For years, just vrty basic self care was a problem. I literally could not do it.
I stepped back and counted the small wins. And when I add them up, to me, it is an absolute victory. Again, I share this to let you know that:
(A) You are not alone. I indersrand this part as well. I’m alive so you will neverbe alone. You will always have at least 1 person who knows the pain. I am your ally and cheerleader. Rooting for you!
(B) You are not your diagnoses. Thst is a word , a label, a means to an end. But you are a person, not a medical reference. A mother. A daughter. A rescuer. A teacher. A cook. A house cleaner. A teacher. A comforter and nurturer. The list goes on. You are not your diagnosis. It may be a ostt of you. But it is not you. Do not feel like you owe your diagnosis anything. You don’t.
(C) There is hope at the emd of your struggle. I can absolutely promise you that.
Please don’t feel sorry for me. I appreixate kindness and compassion, but please don’t feel sorry for me. I am not sorry. I am strong and secure. I am still hurt that I had to suffer through the things I experienced, but I would never trade my healing journey for anuthjng else in the world. There is hope at the proverbial end.
I hope this encouraging in some way. Rooting for you. Girl, you totally got this!
I have not had this issue with Wellbutrin yet. I’m about 1/3 of the way with my treatment. However: there is a fair amount of literature that states that Wellbutrin decreases the resting motor thresholds in many patients. If you think that might be the case with you, just check with your doc.
Hi JuneBeatle,
Thanks for your input!! From other things I’ve read, it does seem like fatigue goes hand in hand with TMS treatments. I’m not a scientist nor a doctor, so I can’t say definitively, but it appears that it definitely is not UNcommon. But when I pause and think about it, it does make sense. TMS is depolarizing certain parts of the brain, essentially restructuring brain chemistry. So it’s like are brains are wanting to to go one way and are being trained to go a different way and it only makes sense thst sleep and fatigue would get all jumbled up in the process. From my own experience, it does seem to level out, so that makes me very glad.
I think the hunger is the same thing. My medications seriously slowed down my metabolism, and now that certain parts of my brain are getting adjusted to their proper settings (or where they should be in my brain specifically, that is), I think it is adjusting my metabolism as well. Or This trying to. It seems like the similar tug of war, push and pull dichotomy that I’ve seen with the fatigue and sleep. I believe this will eventually level out as well.
For you specifically, but also for the others who seem to be getting frustrated with TMS “not working,” here are my suggestions.
1) Get out of your own head. This is hard but necessary, or we’d all drive ourselves mad, in some form or another. If you aren’t working during your TMS, I can only suggest you try what I’ve been trying. I will force no one and again, I’m not a doctor or a therapist. But I can promise this worked for me. Do your TMS. If you’re hungry after, eat something. If you’re tired, take a nap. But then find some way to be involved in someone else’s life. I volunteer 3×/week with the youth at an amazing nonprofit near me.
It might be visiting an elderly neighbor a couple times a week so they arent lonely. And talking to them about THEM. It mught be making extra portions when cooking and bringing some to a rommate or neighbor a few times a week. Maybe you attend church and they need help with varuous things throughout the week. If you have no idea, ask around. Idkwhat it is for you but the options are endless. Give yourself a break from yourself. Y’all all seem like amazing people but again, we all need sometime to get out of our own heads and NOT think about TMS.
2) Journal. There are so many ways to journal. Freewriting. Bullet journals. Prompts. Gratitude journaling. (There are other types as well.) Even if you just get out a notebook and scribble down every emotion you have regarding your diagnosis or treatment or whatever else, it will help. I will repeat again: I’m not a doctor or therapist but I know for myself and many others I personally know, journaling is definitely beneficial. For me, it is necessary.
I don’t make journaling fancy. I’m personally focus more on actually writing vs having my journal look pretty but never get used. I suppose you can make it fancy, but either way, the writing is what’s therapeutic. (Or I guess even drawing. Comics/cartoons/sketches can be a form of journaling as well.) I go through a lot of notebooks, so I just get half-sized notebooks from my local dollar store, and write as close to daily as I can get. My journal always listens and never talks.
There are other things, in sure, to focus on during TMS. I’m just listing and detailing the top 3 that have gotten me through 10 days of treatment so far. So without further ado, I bring you… (drumroll please):
3) Appreciate the small wins. I would absolutely love a miracle that would cure me forevrr of my PTSD. And while I go into most things hopeful and optimistic, I also know that I can’t expect instant and dramatic results right off the bat. Because if it doesn’t happen, I end up getting disappointed on a much larger scale, it seems.
I find that when I focus on little things, I add them up amd am able to see the full picture more clearly. I got diagnosed with PTSD 8 years ago. I would say the disorder started a couple years prior to gdtting it professionally diagnosed. Because of my PTSD, I get overstimulated very easily. I get bouts of deep depression shortly after the memories start flooding in. It got to the point where I was losing jobs left and right . I didnt cate much about my personal care. I just wore whatever scrubby clothes I had, three days worth of unwashed hair, probably didnt brush my teeth…I just didnt care. I motice small things that add up to ome big sign of progress:
I find myself putting on nice jeans and a decent top to go run errands. I have no desore to go overboard, but I enjoy doing my makeup most days. A few weeks ago, I was jusy like I deacribed above. It took the first 4 days for anything to happen. I enjoy getting outaide instead of isolating our of fear of having my PTSD triggered. I’m pretty introverted to begin with, so it has led to lots of isolation of my own doing. I have enjoyed meeting my mom amd dad for lunch on Easter and going to a movie with a friend, albeit at a less-packed time of day. But nonetheless. These little things also add up to one major sign of progress in another area.
That’s all I have for now. You don’t have to do all or any of these. But even before TMS, these were a huge help. During TMS, they are priceless. I hope at least one person gets help from something in this post.
Remember: You are not your diagnosis, nor does it own you.
I have taken Wellbutrin for the last 4 years at a moderate/average dosage level/range. I am on day 10 of rTMS. I have had no tinnitus at all.
