October 25, 2016 at 1:56 pm #5589
If anyone has been diagnosed bipolar but mainly has depression can you please share your experience or knowledge with TMS? I have spoken to a few psychiatrists and done research but do not have much info on this. I know it has helped some bipolar people based on what I’ve read, but is not as common. I got approved for treatment and stopped after 3, because I was scared and afraid of wasting money. But I am pretty desperate now so I want to go back. My other concern is that the doctor put the device on the right side of my head and I seemed to get worse. I will talk to him again tomorrow about maybe moving the device to the left front side. If you can share any info or experiences on this please let me know. Thanks!!October 27, 2016 at 7:22 pm #5591
I too suffer from Bipolar Depression and was at my wits end to find a alternative to treatment. Was even drastically thinking of Electroshock. I have liver issues and to start or continue taking medicine that was NOT helping would do more harm then good. I have completed half of my TMS therapy treatments and have seen and felt improvement. I too found little info on this treatment other then the Neurostar website. And just brief testimonies from clients. Wanted a dialogue like this. Now I did go into this treatment with speculation and did not want the placebo effect to happen. And I don’t think it has. And this is truly helping. Subtle things of course but I don’t feel the same as I did. Now I was told that the treatment for use on the right side has not been approved. So I have a concern for your Dr even doing so. I might be wrong and he is right but I think you should question this. Either by calling another Dr who does the treatment or inquiring here. with someone. I do know studies are being done for anxiety issues for use on right side. Again don’t know if approved. I wish you luck in your treatment.October 27, 2016 at 7:42 pm #5592
I am really glad that you responded to this. Thank you. I just spoke with the TMS doctor last night. He said I can do either side but I am really on the fence about the right side because it seemed to make me much worse a few weeks ago when I did 3 treatments. I felt extremely depressed and scared and more crazy. I have a few questions: 1. where exactly was the device placed on your head? Was it the left front? 2. About how strong was the frequency? (He said normally it is 10hz but for me it was 1hz) 3. Did you feel worse in the beginning? Or just the same?
Thank you so much for your response. I am going to start the treatment again next week, and I might see the other doctor or just request that I receive the normal treatment on the left front side with the higher frequency. Good luck to you! I am glad to hear that it is helping. I saw on a few other forums that it has helped bipolar patients.October 27, 2016 at 7:58 pm #5593
Well I do the left side and always have. And in all honesty I did not feel much till the second week. So that would have been treatment 4, 5, 6. And I had emotions but the gloom was rising. So although anxious and hypersensitive. I was becoming OK. I know the Tech, is not a Doctor so when I inquired about the right side, she might have just said they don’t do it meaning at their office. I know I was started on a 5 and up to the 10 now. I will find the paper to confirm those numbers. I believe that if your are a hypersensitive person it can seem and feel like a hammer hitting you. I bring my ipod in and play music as it makes the time pass faster and occupies my mind to not think about the noise and feeling of the pulses. I know everyone is different and handles things and reacts to things differently. But to get to this point to want this treatment you must have already been through much. Seeing it out might surprise you in the end. There is no guarantees in anything. But desperate people do desperate things. Hence both of us being here. I hope you find your answers and you get relief. I will find my hz number and get back with you, on here.October 27, 2016 at 8:17 pm #5594
Thank you for responding again this is very helpful. Yes, I am very desperate because this has been a terrible illness and I have had it way too long. I will try anything even if I risk wasting money. Honestly I deal much better with physical problems than mental so I’m not too concerned about the pain on the head, but thank you for the heads up. I am sorry you have been through it as well. I have one last question – Did you stop any of your medications before receiving treatment? I know you said that they were not helpful so this question is probably irrelevant. I plan on staying on mine to be safe, but I’m concerned about the Wellbutrin and Adderall so I might cut those down. I think the Lamictal will help continue to stabilize me. The doctor said I could stay on them but I’ll ask him again. The doctor was intelligent but did not seem to know much about bipolar disorder and how the treatment helps it. I don’t think their other doctor does either. It is pretty experimental but I still would like to go through with it.
Thanks!October 28, 2016 at 4:30 pm #5595
Alas, I went and found my paperwork and it does not say the hz. Just duration of treatment and pulses given. I just know they stepped up dosage and I am now receiving optimal dosage. I will inquire on Monday when I am in office. I had been off Medication for 5 years due to my liver issues. And seeking help discussed all the findings with Dr, and we came to TMS treatment. What I am finding now…is this. Suffering from depression your perception on situations are different then not being depressed. So therefore I am having to make adjustments in feelings and how to cope with things. And my health (physical) being is now more so in the forefront. And I am literally taking baby steps to regain strength and stamina. I care about moving forward where before I did not. I see my improvement as the onion layer metaphor. Peeling a layer at a time. And as they go they are becoming clearer to see through. Doctors can only read a book and understand what or how someone feels. They truly understanding is only a blanket that they look at and try to find your pattern on it. And to my understanding this treatment was to be giving to people not having good response to medication. But we all are not cookies cut with same shapes. I may have read you post wrongly but I see your underlying comments about this Dr. And feel you don’t quite trust him or enjoy his understanding. Maybe before you delve back into treatment with him. Take the time and find another one. I think I would. This was a life and death issue in my eyes (for me). And if I did not like or trusted my Doctor..I would not have went through this till I did.
November 3, 2016 at 10:12 pm #5600
- This reply was modified 11 months, 3 weeks ago by Gin Doloughan.
So I am sorry for my delay in answering your comment on the HZ level. And my Tech has informed me that the machines settings are different and vary from each. I am using the https://neurostar.com/ and am at 120 percent. The max the machine goes. Hope this helps.November 4, 2016 at 2:10 pm #5601
Thank you very much again for your responses! This is extremely helpful. I feel less scared now to go through with the treatment. Though I am still nervous and it may not help, I will do what it takes and take that chance. I took your advice and spoke with another doctor. He was from a different facility that is more expensive but he said he gives the normal dosage of frequency and the same machine to his bipolar patients. I will go back to the original facility next week since it is much cheaper, and still has a good reputation. I know someone else who went to the same facility and she said it changed her life. I am glad that you are benefiting from the treatment that is wonderful. When you said you now care about moving forward where as before you did not, that is very good because it shows that you now have hope. I have lost most of my hope when being depressed so I want to get that back again. I am going in next week to get measured for the other side of my head (the normal placement) and hopefully I will go through with everything. I checked the website you sent and that is the exact same company I am using near where I live. I am nervous that I will get worse but I’ll post the updates and we’ll see what happens. Thanks again!November 4, 2016 at 8:07 pm #5602
I really look forward to further conversations. I have not found many UP to Date chats with people receiving this treatment. And although I have had good results and layers falling away and I am becoming more aware. I know others might not. I went into this with as much information I could find. And understood Placebo effect. And I gave it the benefit of the doubt for sure. And am finding as each session comes and goes, new things happen. I actually was able to read a article in a magazine. Of course while waiting for my appointment. But prior…no way. Picture glances only. And would reread lines over and over. And I do have to truly focus. But that is even easier. I look forward to hearing your updates and happenings. I do hope you find relief. And Good Luck. Blessed Be!December 16, 2016 at 1:32 am #5627
Hello, let me tell you about my experience with TMS back January of 2016. It was a disaster that ruined my life.
I’ve had depression on and off for 35 years. The worst it ever was would be just lying around and not doing much no motivation and when i was on different meds that i hated i could come off of them and live without meds.and thats the way it was before i did TMS. After my 4th treatment i cam home and felt dizzy and neasua. I did do my Friday TMS the next week the same thing. The third week i woke up in middle night to go to the bathroom and i felt like I was going to dye.. I had this over whelming sick depression i never experienced before, i felt like i was going to dye. The next day the doctor put me on medication. I stayed on it for 5 days and came off because i wasn’t on any meds when i started and wanted to see if i got better. Then by the 17th session i started to get activated and wired. I was starting to not sleep by the 20 session i went to go to sleep and i was wired, Like i did speed. it was so scary, i wanted to drift off to sleep but i felt totaly speeded up. I did not sleep at all that night and next day went back on meds and hardly slept. then i just crashed with insane depression. Mind you before TMS i wasn’t on any meds and once in a while would take an Ativan for 2-3 days to help sleep then come off and i would sleep about 6 hours. After TMS i would take an Ativan and NO sleep, Nothing i trpppled my dosage and no sleep. I tried Seroquel 100mgs In the past Seoquel would knock me out and i would just sleep all day and be groogy. Now after TMS, Nothing NO sleep, WFT what has happenedd, I felt like i was dying.and was only sleeping 2 hours every night. My eyes were hurting, my lungs i was so exhusted but could not sleep. I never had this in my life. this went on for 2 weeks until i got to a doctor who put me on Zyprexa and Seroquel This past year has been horrible with 60lbs of weight gain from meds which i was a walking Zombie. I used to play in band guitar and i can no long do this. The doctor who did TMS said i never told her i was Bipolar. I was like what? You did the hours accesment. During treatment i was telling her i’m feeling much worse dose this happned. She flat out said Never hear of any one getting worse. She said that TMS made me Manic and thats why i could not sleep and sent me to another doctor. 11 months later life is so bad i Paid $500 to see this Dr Perera. He has been on the Dr Oz TV show promoted TMS years back. He is head of the TMS society and Pioneer in TMS, from Harvard and Columbia. During my first visti he said the exact same thing. It gave me Mania and thats why i cannot sleep. Well no one said it can cuuse Mania. On Neurostars website says does NOT cause insomnina or worsening of depression. They are liers because there is literatue out there taliing about TMS indused Mania. The problem is. I can’t sleep anymore without some powerful med. Thats so scary i was not like that before TMS. I just went 5 days with 1 hours sleep on 1 mg Klonopin does nothing. Tms has changed how medications work or do not work, thats scary in itself and now i cannot sleep and have pain all over my body from severe depression. My family wife and kids have lost their dad. I’m not the same person i was before TMS . I can not longer work and i’m in constant pain. This all started right after my last TMS treatment.December 16, 2016 at 2:03 am #5628
Wow that is frightening. I don’t know what I would do if my situation got worse. I am still thinking clearer and although my energy is not up to where I wish it to be, do to actual physical issues, and not my mind. I can’t imagine going further into a rabbit hole like you have. It’s a struggle when untouched your mind messes with you. Even more when something you hoped would help you just makes it worse. We all are prisoners to this illness. I am sorry for you as well as your family. Its hard for loved ones to get us in the first place let alone see a change they thought for better just make you worse. So after seeing Dr Perera is there a game plan? Or like before taking medicines that don’t help and a even more intolerable mind and life. (and I am not saying directly that is you..our illness in general is.)
I guess with reading all this I am going to have to rethink my excitement in wanting the right side done. For my anxiety.
Blessed Be to you and your family. I know my words don’t do you any comfort but I am sorry.December 16, 2016 at 2:50 am #5629
Thank you for the reply. I did a skype session with Dr Perera 2 weeks ago as he’s in Connecticut & im in Arizona. His game plan is Meds. He put me one depakote & I got more depressed after 10 days he told me to stop & said make a second appointment which he didn’t have any openings for 2 weeks so I had to honor my local doctor but yep back to meds which haven’t worked for me. I just don’t want what happens to me happen to anyone else. There are too many unknowns with this treatment.December 16, 2016 at 3:48 am #5630
Oh I am very glad you shared..and it is true that the treatment has many unknowns. But like medication what works for one doesn’t work for another. Its a battle that know one person’s story is same. Similar maybe but truly never same. If that were the case we all would have the cookie cutter drug that voila works. I wish you well. And try not to get into your head to much. And just Be. I know its easier said then done.
Blessed Be to you and your family. And try to enjoy some of the holiday season in however you and your family celebrate. And by all means if you wish to continue chatting feel free.
Arizona..wow never been but photos are beautiful that I’ve seen.
Thanks for bringing some awareness.October 7, 2017 at 5:09 am #6022
I guess I’m a little late to this party. You’ll have to forgive the VA, they’re highly incompetent. I’ve been wrestling with depression most of my life, I’m 44. After 14 years in the military the docs added Complex PTSD and Dysthymia. In 2016 I finally accepted I wasn’t going to get better on my own and went to the VA clinic. I’ve been unemployed and have no private insurance so it was my only option. The past 18 months have been hell. I’ve got a small pharmacy worth of meds from the VA and it’s all garbage. I gained 40lbs in one month, a very attractive string of saliva spills over my lower lip when I begin to speak and I randomly stop what I’m doing to stare vacantly into space for awkward lengths of time. I was hoping an insatiable craving for brains would pull it all together but I’ll have to settle for Bipolar II. My father had it. Now it all makes sense.
I finally started TMS about 5 weeks ago, today was my 23rd session. I am also expecting Ashton Kutcher to come busting in one day and reveal that I have been Punk’d. Is this a cruel prank? Lay back and let a mechanical woodpecker thump my skull for 40 minutes every day? And if that’s not bad enough, the VA doesn’t have a machine so I have to go to a private office which is an hour drive each way. I’m exhausted, irritable, angry and discouraged to the point of utter despair. After each session I feel like a number two pencil after the SATs. The first week I spent an hour driving in circles before I got on the correct route. I guess the one positive is that I only have to pay for gas which is about $100 a week but VA is picking up the TMS tab.
I really had high hopes for this treatment. Instead I feel like Ralphy when he finally gets his Little Orphan Annie decoder ring. I don’t even know where to find Ovaltine. I’ve been patient, obedient and gone out of my way to keep any of it from affecting my family or friends. As a result I haven’t heard from any family or friends in over 4 years. I saw a quote that said, “For those who haven’t been through it, no explanation is possible. For those who have, no explanation is necessary. That’s fine, I hope they never do understand what this is like. Being angry at me though makes as much sense as getting mad at a woman with morning sickness for vomiting.
I’ll finish this treatment and continue my current meds but I’m done. Either it works or it doesn’t but I did everything in my power and will be able to hang myself without regret.October 7, 2017 at 1:53 pm #6023
Good Morning Irish_Whiskey:
First let me thank you for your service to our country and to each and everyone of us who have benefited from your service through our freedom. And I apologize for what this country does not offer Veterans in the way of support for your individual needs. It is difficult to acknowledge this dichotomy in our country.
I think we have something in common if you are Irish – as I kind of am assuming – I may be wrong. I am Irish.
For the matter at hand here – I am 66 and am writing to you because I suffered from depression for 60 years before undergoing NeuroStar TMS. Not sure what company machine you are being treated with. TMS, being a medical treatment, does not assure a comfortable experience for everyone, some find it more tolerable than others. I was scared beyond rationality when I started so I really relate to your description of the treatment. I was allowing someone to mess with my brain – OMG – was my reoccurring thought. What if permanent damage is done, as I was suicidal (had tried to end my life twice) and meds had stopped working? I thought I knew if this treatment didn’t work it would be suicide or being committed to an institution for the rest of my life. When we are depressed it is difficult to see other options. I had a difficult start with the treatment and had to be remapped two weeks in. In the end the treatment became more comfortable and has worked for me but the journey through it (at times) was tough and I did not experience a lift, so to speak, until treatment had ended. The end results are that the treatment has worked and my life is so different now. I am living in remission and go for 3 booster treatments once a year and am off $20,000 of meds per year. I was desperate too, thinking nothing was going to work. I have become an advocate for treatment of brain disorders and TMS and will say this to you. With research and talking with doctors, TMS will sometimes take more time (in some patients) to affect the brain’s electrical, chemical system than in others. Consequently a positive response is not always evident right away. In some patients results take much more time as the brain is adjusting to the change as a result of the treatments. Also, sometimes the result of TMS in combination with medications can produce a much improved – positive outcome. TMS is a new treatment and little is understood as to how it works. Depression is an all-encompassing disorder because it affects our brains and bodies. Maybe listening to others journeys through depression on YouTube may give you some other ideas and tools in dealing with this as you go through this treatment and beyond. Brain research is at a heightened level all over the world. It is not a matter of no other options available for depression depending on your response to TMS. It’s a matter of holding on till science actually pinpoints causes and treatments for depression more decisively. Science is getting closer and closer. I know how hard it is to hold on through this disorder. But there is hope. I never went to a support group (for families dealing with brain disorders of all types) until recently and have found the NAMI group very helpful. I wish I had started earlier. There is support and ideas others may offer to you that may be helpful.
As far as friends and family members backing off – its part of the journey of depression, unfortunately. People who don’t suffer most often do not understand this invisible illness. They get scared, or don’t have the patience, or don’t like the change that happens with depression. As much as it is deeply hurtful at times, it is not worth hurting any more than you do already. Life and people can be hurtful and cruel sometimes.
There is an abundance of support out here. We have to keep standing up and putting one foot in front of the other. I have had three family members who have taken their own lives and TMS probably would have worked for them had they been able to hang on. The lesson is that your effective treatment may be TMS or maybe just around the corner from being discovered. Don’t give up. Please keep in touch with us and reach out because that does help.
October 7, 2017 at 2:03 pm #6025
- This reply was modified 1 week, 6 days ago by colleencasey.
Well I won’t mince words here. But I read your statement and frankly the only one that sticks out is Will be able to hang myself without regret. Please don’t..I get it. I truly do. I am about 9 months out with the last treatment and think I need go and get a maintenance session or two. And fighting similar thoughts. It SUCKS for sure. Wanting to stop the world and get off. If only briefly. But what you are speaking of is FINAL.
Now without me sounding like I KNOW YOU. Because I only understand YOU as a fellow sufferer. But your experiences is what makes you…well YOU. As mine make me …Me. I first want to also Thank you for your services.
Wonder..do you have someone to talk with? Someone in your life? Family, children? I know you must see a Dr for the Medicine but anyone just to talk with? I get it if you do and it doesn’t help as well. I also get it if you do have a family and they just don’t get it. But they want to.
Perspective is something each individual has. And someone that doesn’t truly get OURS, well it frustrates me when I am trying to explain how I am feeling and what made me react to something and they just don’t see the correlation and then I feel NUTS and even angrier. And isolate myself into my RENTED room. And limit my interaction with them and the world till my attitude adjusts. Which SUCKS because they don’t actually give you the space. But poke at you like a bear in a cage with stupid comments. Well I don’t want to make this about me.
So the treatment didn’t work. And I don’t know you, or your situation totally. I am sad for you that it did not at least give you some relief. I fear for you in your final statement. And only wonder what can be said to help you NOT. And coming in Short in my words. Try and calm your mind if only for a minute. Try and listen to a song and truly hear it. Be alone but purge yourself of feelings and thoughts if you can. It takes practice to do this. But could help in the end. I have to remind myself often to do it. Because in the chaos I forget. And right now I am going through something myself that warrants all the input I am saying. Yet I can’t find the ability to do it. And I know I should. I know this message only touches briefly on my thoughts and I didn’t delve much..but I am willing to continue if any parts of my response helped and you wish or want to continue contact with someone and bounce ideas and things about.
We sufferers just want PEACE in our mind. As well as in our World.
Blessed Be to you.October 7, 2017 at 2:48 pm #6026
Okay so let’s get the cards on the table, the unspoken finally spoken about suicidal thoughts.
Mine, even though TMS has worked, are still reoccurring. Suicidal thoughts don’t always go away with depression. Its about brain patterning, chemistry, pre-disposition, etc. But what I have learned to do is say, this is my safety escape, to actually allow those feelings and thoughts and know it takes me away from the specifics of the pain I am in for a brief time. Crazy but I use the thoughts as a tool. I am HSP also and feel things so deeply that I feel like my insides are on fire. It’s okay to just sit with the feeling and pain, let them flow through and then out of you. I am on guard and monitor myself, but I know I don’t want to die, I just want the pain to stop. And that is really okay.
I really like what Gin said about our depression is who we are individually. It makes me ME, makes so much sense.
It’s okay to want to escape the pain but remember feelings are temporary and just feelings not facts. I was taught to do a chart when I get overwhelmed. On one side I write “What I Feel” and on the other side I write, “What I Know” Example – I feel like I want to die. I know I don’t want to die, I just want the pain to stop. I do pages of this at times. It is SO helpful to balance feelings with intellect and logic. We can all do this!!!!
Sending positives and support!
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