Viewing 7 posts - 1 through 7 (of 7 total)
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  • #5710

    Chuck54
    Participant

    I am very scared after I’ve read all the post on this site about TMS treatment and finding out 99% of the post on this site state that TMS did nothing or made symptoms worse. I am scheduled to start treatments in 3 weeks after reading these post it sounds like TMS is not worth taking the risk. I am on disability because of depression, Bipolar, Panic attacks, general and social anxiety. Obviously, I am living on a low fixed income. The last thing I need is to spend the money I am having a hard time scraping up and find out that the TMS treatments I have will likely make some or all of my symptoms worse..

    #5711

    Dee Pressed
    Participant

    Dear Chuck
    I totally can understand how you would feel TMS is not worth taking the risk. My insurance covered some of my TMS or else I never would have tried it. My insurance ran out toward the end of my treatments and I still owe money out of pocket for my last few sessions. Towards the end of my sessions I felt a little less depressed. That lasted for about a month, six weeks max, then back to depression again, and a doctor to try medication AGAIN.
    My opinion is that TMS is a waste of money..
    I suffer too from panic attacks or did until years ago my doctor prescribed klonopin. No more panic attacks since starting on that medication. If you haven’t tried it maybe ask your doctor about it, it’s worth a try. I also take Valium for anxiety. That helps or there are other anti-anxiety drugs in that same family of drugs
    The problem I have with TMS is it undid what the 2 aforementioned drugs worked well for. That lasted for a few weeks.
    I knew TMS was kind of an out there thing to try and help with depression. I am guessing most of us who try it are just that desperate.
    My opinion, especially if you are on a fixed income is don’t do it. Save your money. Try some other meds. TMS caused some minor physical problems, headaches, and some major, I am extremely nearsighted, and by the time I was almost through with TMS my ophthalmologist saw a huge decline in my vision, after I made an appt. because I could not see very well. It also raised the pressure in both my eyes. Coincidence? No I do not think so. So I had to pay out money for 3 eye doctor visits.
    I would need more proof that TMS actually works before ever trying it again, and a whole lot more money. My sessions were about $200 each when I was paying out of pocket. With no positive result they can wait for their money.
    Good luck to you. Depression sucks but I do not feel TMS in my case was the answer.

    #5712

    kjacks4474
    Participant

    Hi Chuck,

    I think everyone’s experience is different, I can however tell you that TMS has changed my life for the better! I think back to how I lived my life before TMS and how I live my life now and I can honestly say it’s been a 180! I have suffered with depression and anxiety for 20 years, I have tried every drug on the market and to no avail. It is my understanding from discussions with my doctor and research I have done that TMS is a last resort (when medication is not working). If you are on medication that is working (as Dee Pressed mentioned) then I don’t believe you would even need TMS.

    I was fortunate enough that my insurance covered a good portion of my treatment. I felt for me it was worth the risk. According to my doctor it would either help me or not (meaning it couldn’t make things worse). I did the initial round of TMS and really didn’t notice that much change in myself immediately although my family and husband did. I did notice subtle changes ( I wasn’t napping all the time, I started going out of the house, etc). After the initial treatment ended my doctor decided to do maintenance once a month and I have been doing that for about 4 months. I feel so good now! I only wish I had done it sooner.

    I also used this site before deciding to do treatment and there are a lot of negatives on here with that being said you are in a community of depressed people and it is extremely hard to be positive when you are depressed! I haven’t been on the site or commented on posts since my treatment but when I saw your post I thought you should know that it can work, maybe just not for everyone. I think it’s important to mention also that I had zero side effects.

    Whatever you decide it is your decision to make. I wish you nothing but the best and pray you find something that will work for you!

    #5713

    Chuck54
    Participant

    Hi kjacks4474,
    I thank you to take the time for the first time to respond to a post. I Have been suffering with depression and for over thirty years. Plus have suffered with social anxiety shyness) my whole life. Have you only suffered with just depression No Panic attacks or any type of anxiety? My wife (The love of my life) divorced me a little over 7 years ago as she told me she could no longer put up living with someone who was depressed all the time. Which I don’t blame her at all I totally understand why. But, since then it really put me in a deeper spiral of depression, Bipolar Type II, general anxiety, social anxiety (Shyness) and panic attacks. I have absolutely no self confidence, self esteem, sleep all day etc.. and find it extremely hard to leave my apartment for any reason.My psychiatric recommend I get TMS treatment because all the medications she has prescribed for me are not working at all. I had ECT treatments 7 years ago it did nothing for me except caused me to lose my long tem memory, Thank you So much for your positive response it means so much. Best wishes

    #5721

    Dave_Wigfield
    Participant

    Hi Chuck

    I can tell you that there are certainly a lot of people that have benefited from TMS for their Major Depressive Disorder. Because of my situation, I am able to learn about these stories first hand and see how this treatment has helped so many people get their life back. However, TMS is not 100 percent guaranteed to work for everyone, and the more treatment-averse a person the less likely for desired results.

    One thing you’re probably noticing on this forum is that a lot of people will log on to discuss symptoms or issues that were never discussed anywhere beforehand, and maybe they are a little frustrated or even afraid. One of the great things about this forum is that there’s really not a lot of places like it where people can talk and learn about TMS, especially as this therapy is so new. I think a lot of the less-than-stellar posts you’re reading are about that. But again, make no mistake that TMS is proven and has helped a lot of people.

    One thing to seriously take into consideration is that TMS is currently cleared by the FDA for the treatment of Major Depressive Disorder, any other treatment is considered off-label. Not that TMS wont work for other conditions, just that the FDA has not cleared them for lack of sufficient research. TMS is very new and not wholly inexpensive. For those reasons and more it is very important to work with your TMS-prescribing doctor to make sure that you are getting the best treatment possible, especially since there are other conditions at play.

    Best of luck, and please let us know how you make out!

    #5722

    Martha Rhodes
    Participant

    Dear Chuck (and anyone else who has doubts/concerns about TMS),
    I was one of the first patients in the country to try TMS almost seven years ago. I, too, had what I call the FUD Factor: Fear, Uncertainty, and Doubt. There was nothing online for me to read (other than braniac doctors’ research papers) and no one to talk to about it — even my psychiatrist at the time discouraged me from trying TMS. But I had come off of a suicide attempt and about six different medications that not only didn’t work, they made me feel worse. So my attitude was “What the hell do I have to lose anyway?!”

    What all this said, however, I was diagnosed ONLY with Major Depressive Disorder which is the single diagnosis the FDA cleared TMS for in 2008. I went ahead and scheduled the six weeks therapy (after winning a battle with my insurance company who denied me twice but then came through with coverage) and I went from a HAM-D Scale rating of 29 at Week #1 (30 being the highest and worst level of depression) to a ZERO, full remission by Week #7.
    Something important to note is that there are common co-morbidities with Major Depressive Disorder–Anxiety Disorder being one of the most prevalent. In my case, I thought I just had depression, but as those symptoms disappeared, the underlying anxiety symptoms became more apparent so my doctor and I came up with a strategy to deal with the anxiety. But TMS DID NOT CAUSE my anxiety — it was always there but just not as intrusive or painful as the depression symptoms. Other common co-morbidities are OCD and PTSD.

    PLEASE KNOW THIS:
    TMS is a TOOL and not a CURE for chronic depression. Furthermore, TMS is NOT a Quick Fix — it’s a cumulative process that takes at least 20 sessions to start to reach the deeper parts of the brain that require stimulation in order to wake them up so they’ll do their job. In some patients (me, for example) a phenomenon that I call “The Dip” where one feels worse before the relief from TMS kicks in can occur. Not always, but sometimes this happens. Also, the “results” are subtle but unmistakable. There’s no dramatic “”AHA moment where you all of sudden feel like “WOO HOO I’m gonna go out and set the world on fire now!”. No, it’s a quiet, calm feeling of “Okay-ness” that allows you to feel like you can go on living without that disgusting dread that’s there every morning when you wake up. Many times patients themselves don’t realize they are feeling better — it’s the people around them who notice it first.

    As for the SIDE EFFECTS, after the clinical trials and literally millions of TMS treatments administered since 2008, the only side effects reported are a very slight risk of seizure and discomfort on the outside of the head where the magnetic pulses are delivered (it feels like an intense tapping, like a woodpecker or a noogie). Some people report headaches, although I haven’t experienced that, but headaches can also come from either appointment related or other unrelated stress factors. There is NO CLINICAL EVIDENCE in the FDA trials and in the near-decade since TMS became available as a mainstream therapy that memory loss, eye pressure, eyesight loss, or loss of any bodily functions whatsoever are attributed to TMS. If anything, these side effect symptoms have been directly attributable to myriad medications. (If you want further information on this please respond to this post and I’ll give you that data.)

    Here is some TMS EFFICACY DATA:
    A 2013 12-month study presented at the American Psychiatric Assn.’s annual meeting reported that 68% of 257 patients responded to TMS, and 45% achieved complete remission with a full course (30 treatments) of TMS.
    In 2014 another 12-month study with 800 patients revealed that 1 in 2 patients experienced significant improvement, and 1 in 3 patients became symptom-free.
    It’s important to note that not every therapy works for every patient, as you are already painfully aware. And as I mentioned, TMS is a tool, not a cure for depression. So you have to find the TOOL THAT WORKS FOR YOU. For some it’s a combination of TMS and meds, for others, it’s meds and ECT, for others it’s one or the other or none of these. But please don’t let someone else who may (understandbly) be frustrated and hopeless make your decision for you. Talk to your doctor(s), do your research, follow therapy trends and know that there is a way through this miserable illness. TMS has saved many lives (including my own!) and will continue to do so for those who respond. For those who don’t, they must continue to find what WILL help relieve their symptoms. I know, this is easier said than done, but hope, courage and support from others are what’s needed in the process of finding the therapy that’s going to help.
    And as with any tool, maintenance is required (just as one has to go to the doctor for Rx renewal/adjustments). But TMS is generally quite durable. That is, most patients don’t have to start maintenance for at least six months to a year. Thereafter, it’s up to the patient and the doctor’s assessment of recurring symptoms for this chronic illness that will determine a maintenance program just as they would with medication or ECT therapies.

    #5723

    colleencasey
    Participant

    Hi Chuck:

    I wanted to take a few minutes to respond to your post.

    First of all your fear is totally understandable and part of the process when considering most medical treatments. Sometimes that fear can overtake our objectivity especially when whatever treatment we are considering is not 100% guaranteed to be effective. Unfortunately there are very few medical treatments that can make that type of promise. So know you are not alone and are a part of a community of persons who struggle with a similar fear. It is challenging no doubt.

    I am a 66 year-old patient who has suffered from Major Depressive Disorder and suicidal ideation since before I was 6 years old, the age at which I first attempted to end my life. I entered counseling in my teens and subsequently was on medication for about 30 years starting when I was 30, (medications were never more than minimally effective). I tried an additional attempt to end my life in my mid-30s’, was a self-abuser, had two in-patient hospitalizations, became addicted to prescription drugs and have engaged in years of psychotherapy. My medications stopped working when I was 60 and I was at a crisis point with my depression.

    My doctor had just brought a Neurostar TMS Treatment System to his practice so I decided to undergo the treatments. I would like to share a little of my experience as a patient with you.

    I am not sure what company manufacturers the TMS System you will be treated with; you may want to ask. Regardless, what is important, in lieu of the fear of the unknown, is to avail and educate ourselves with as much information about the treatment we are considering as possible. That way we, as the patient, can make a more informed, knowledgeable and responsible decision. Our doctors and treatment teams would be the first resource for assessment and gathering information. Then there are other options for education to consider. I found the site that Neurostar TMS offers to be invaluable. There is educational info, scientific data info to support FDA approval compliance, insurance information, FAQs, etc. There are also patient testimonies that reflect what the experience of undergoing treatments is like and the results. I have included a couple of links if you want to take a look. https://neurostar.com, https://neurostar.com/tms-therapy-patient-reviews-experiences/ – The Robert, Craig, Martha and Kim video is one of my favorites for the amount of info revealed by the patients.

    Generic Searches for Transcranial Magnetic Stimulation offer articles, publications and more videos.

    The decision is up to you Chuck as the patient. Consultation and discussion with your doctor is foundational as she/he is the expert. You should be empowered and supported by your doctor as you process their information about TMS, educate yourself with additional info and make the decision that is right for you.
    Is there a risk of TMS working versus not working? The answer is “yes.” However the question at the base of the decision after all information is considered is,
    “Are you worth the risk?”

    Chuck, I was terrified too. However I had a very similar outcome as kjacks4474. TMS has changed my life. After 60 years of depression I am in remission, going for a couple of booster treatments each year. That’s it. I take no medication for depression after being on $20,000 worth each year. The last six years of my life have been the best six years of my life. I have cognitive clarity, energy, desire to achieve, joy and an ability to work through and handle the challenges of life in a balanced manner.

    Listen to your doctor, consider the information you gather and then trust as much as you can your mind and heart when making this decision.

    Chuck, brain disorders such as depression and anxiety require an eclectic approach towards treatment and management. TMS is only one element of a multi-faceted approach. It is important to attend to brain health with a broad spectrum view, because diet, exercise, stress, sleep, socialization, etc. all contribute to how our brain functions bio-chemically.

    Good Luck with your path and Keep us posted. You are in my prayers of guidance and strength.

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