Profile for User: colleencasey

Hi baileyannique:
Your questions are common of most patients for sure! The answers are going to vary as each experience is different – there are so many variables. Dips and lifts happen at different times throughout treatment and vary in duration. Just know this is your journey and your response will be as individual as you are. Using this site for info and support as well as your treatment team is a positive path. I found the same response to the dip as jrb, it was very discouraging. I relied on my Dr.’s and treatment team’s advice to continue, (I wanted to quite treatments two weeks in, as I thought I had done permanent damage to my brain during the dip). However, that was far from the results though! This process can create a physical, emotional and mental roller coaster effect (temporarily). And yes some of us did not experience the lift until treatment ended. However, that doesn’t mean treatment wasn’t working and creating neurological changes. Many report that family members and friends notice an uplift before the actual patient does. And that occurs for a variety of reasons. This was the case for me. Hang in there with the ups and downs, dips and lifts and keep the light of hope burning! Sending support.

Hi jrb923:

Thanks for posting. Yes the changes can be subtle as your brain adjusts to the treatments. Sometimes there are delayed responses and other times roller coaster type responses in addition to what you are reporting – slow and steady. Many patients also adjust to the physical sensation of the tapping quickly with minimal discomfort at the beginning. Hope you continue on this path. Would love to hear the journey you traveled to lead to TMS treatments, if sometime you would like to share. More importantly, sending lots of positives for continued improvement as you undergo the treatments. Please let us know how you are doing.
Best,
Colleen

Wow – how interesting! Thanks for sharing that about the brain circuitry flip.
Chrissy I did not experience a lift until after 6 weeks of treatments ended, so try not to make a decision to leave treatment early without your doctor’s input. Some people have had a response three months out. TMS is such an individualized treatment that some specific responses may be similar, like the “dip” experience, for several but not all patients. It’s a day by day, person by person treatment and the journey is not the same comparatively.
I am sending all positive vibes and energy your way. Keep in touch as the journey can be somewhat like a roller coaster ride, ups and downs. We are here to support you, whatever your journey may be.
Sending a smile. 🙂

texast9018:

I have undergone this treatment for depression and minor anxiety. I think the post above yours from Dave W. speaks well to what science is supporting. This is a unique treatment, and relatively new to the treatment regime being offered more regularly by psychiatrists. With that said, sometimes there are misunderstandings as to the effects of the treatment. Some patients will address what they think are effects of TMS such as interrupted sleep and anxiety. Dave’s explanation coordinates with my doctor’s input when we are discussing these issues. There is no scientific evidence that TMS causes anxiety or sleep disturbances. My doctor reports quite the opposite – improved sleep and decreased anxiety (with bilateral treatments). TMS is like lifting the cover off of other issues as depression symptoms are improved. Then we can address those issues on our journey to improved mental health. As Dave said, which is on point, this is a process and it can be a tumultuous path. The brain needs time to settle into a new energy state. Talk with your doctor about what she/he is observing with their patients. That is where you can gather lived experience information. Also if you visit neurostar.com there are recent patient testimonials that may be helpful.
Keep in touch,
Colleen

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!

barbm:
I think Dave’s suggestions are spot on, especially when you consider that this is a medical procedure and the brain is already battling the anxiety and stress associated with TMS treatments. Minimizing stress during this time can help throughout the treatment process.
I am happy to hear that you spoke to your doctor and that this situation was remedied so that you can proceed in a more appropriate environment and atmosphere. You are a great model for others who may be confronted with the same or similar issues. Thanks for your contribution to this site.
Best of luck with your treatments and stay in touch.
Colleen

ccg5f:
How long has your doctor been administering TMS treatments and how many patients has she/he administered treatments to? It seems like you deserve further conversation, information and response, not just “I have never seen this before.” I had an unusual response to treatments and my doctor remapped between treatment 10 and 11 and it resolved the issue upon readjustment of the coils (and it was ever so slight but made a difference).
I would pursue this with your doctor until you have received information that satisfies your concerns. This is a medical treatment and should be addressed with that mindset and concern by your doctor and treatment team.
Please keep in touch.
Colleen

DesertDao:
Being a patient, I can offer info that I have come across. I am not in the medical field but just interested in passing info along that may be helpful. There are studies being done on administering treatments on a different schedule to patients who have intense suicidal ideation with depression. Also treatments are being administered on a different schedule for those who have moved away from their doctors and need follow up treatments, and want to return to their doctor for the treatments. They cannot however take several days off for these consecutive boosters.
Now multiple treatments are being given in one day. For both, three treatments a day are administered. There have been successful outcomes for both. Some on new patients some on returning patients. It is worth talking to your doctor about. I am not sure how insurance works with multiple treatments per day and with any treatment, it works for some and not others.
What I do know as a patient, who previously suffered from depression for 60 years, is that we just want to get better so we can live the life we know deep inside that we are meant to live. TMS may or may not be the answer for all patients; it is new so there are many ways it is being administered to uncover all its potential as well as revealing more and more info about depression. Do not give up. Scientists are working diligently to uncover the mysteries behind depression. There are new avenues to try every day. It may take a progressively thinking doctor to explore this, but patients are responding to these new treatment avenues.
Also, I experienced the “dip” (which many but not all patients experience) and it was horrific but it was temporary. I did not experience success with TMS until the six week course of treatments was over.
Hope this is helpful.
Colleen

mandm:

How many treatments did you have? It’s unfortunate that the tech did not address your concerns with you. I am on my way out of town for three days but when I return, I will post an answer with some information that may be helpful. I am only a patient but had treatment 6 1/2 years ago and have been a patient advocate for some time.
Sending supportive vibes.
Colleen

Nefelibata_NI

I had TMS 6 years ago and I have had remission and am off all meds. I do go for booster treatments about once a year for 3 treatments. Even with this result, I still struggle at times to manage my disorder as there are triggers and life situations that are bumps in the road.
I agree with Mass. TMS is a tool not a cure as depression is a chronic illness. When I was at a NAMI meeting a few years ago a patient was presenting with a different diagnosis and did not undergo TMS. But I learned a very valuable lesson from him. And it is this. A brain disorder and subsequent mental illness is an eclectic condition which takes a broad base of tools to address. Eating right, exercise, education about one’s particular diagnosis, support systems, treatment (meds, therapy, etc.) all help to some degree but when combined and attended to daily, help to a larger degree. As Mass said a shift in perspective to thinking about the tools we need to use each day and using them (even though this can be a monumental task at time) is helpful. This is not an easy path we have been given and we can’t give it or have it taken away so learning to co-partner with it and helping others understand this can help us manage our lives better. Also, many patients need booster treatments. My doctor advises that the sooner you recognize that you are slipping back and the quicker you get in for boosters the easier the depression is to treat and less amount of treatments are necessary.
Hope this is somewhat helpful. Good luck and let us know how you are doing.

Lasthope97:
Your sentence, “However, as you know, when you feel this bad it is hard to even brush your teeth, much less exercise,” could not be more true. So often the lethargy that accompanies depression is unbearable and routinely prevents us from functioning even minimally.
With that said I applaud your continuous efforts even in the midst of the challenges that are a part of depression.
It is good to know that your doctor is professional and responsible – working with your individual case in regard to the course of treatment. That is one of the advantages of TMS; its not a one method treatment. The treatment can be tailored to the individual patient. Your doctor and treatment team can be some of your strongest supporters.
I also agree that those who do not experience depression don’t understand it (kind of like everything in life I guess). Because depression is a family illness so to speak, as our families are affected by our depression challenges, they are a part of the ups and downs. This complicates family life and relationships. There are support groups and organizations such as NAMI, that offer patients, family and concerned individuals education, insight and support. You may be aware of this already. They can be very helpful for all.
Fighting the discouragement that erupts with depression is difficult. Please know you will find support on this site and also that it is a resource of information for many aspects of TMS treatment as well as other brain disorders.
Stay in touch and let us know how you are doing. We all want the same for each other – remission or at least a marked improvement.
Thanks for your update and contribution. It helps so many.

Lasthope97:
Good to hear from you. You are spot on taking care of yourself. A patient who suffers with a similar brain disorder once told me that if you eat right – that may make you feel 1% better, if you get some exercise – that may make you feel 3% better, if you make one social contact every couple of days – that may make you feel 2% better – added up that is 6% better than previously. That is a gain! And all efforts help as you travel this road to feeling better.
I am sending positive vibes that TMS is successful for you. If by chance it works out different from the way you would like, my doctor has told me over the years, with the current brain research there will always be something else to try as a result of this current research. Depression is a multifaceted disorder so treatments may evolve or be discovered in one area or another that can improve your specific situation.
It can be so very difficult most days until major improvements can be achieved. Support can help us get through whether it be close or from afar. This forum, groups such as NAMI and/or social or religious connections can offer needed support too.
Google Alerts can provide you with updated information on many subjects via email. You may want to check it out and set up an alert for research regarding depression.
Let us know how you are progressing through the rest of your treatment. I did not notice improvement until after treatment ended. I have heard other patients describe the same outcome. And others feel better at different intervals throughout treatment.
I don’t know if this will help, but I listen to a gentleman named Mo Gawdat who suffered with depression. He set on a journey to find happiness and suffered some tremendous losses along the way. He has a unique perspective and beliefs that have helped me change my thinking which limits the amount of suffering I experience from day to day. You might want to take a listen on youtube. I will try anything to improve my perspective and positive thinking. And there are many people now speaking (on youtube) on different methodologies to achieve this.
Stay in touch. We are here to support your journey and learn from you as well.

RuthMurray:
What is air jetted hydro massage? I would be interested in knowing how it affects depression. If it is another tool to use in a person’s journey to manage depression, the info would be helpful. Thanks.

Sheba:
I agree completely with zsazsa, “one, making sure I have a maintenance plan (i.e. a discounted rate I can afford) so when I start feeling the dip I can go in for a treatment. One treatment can make a difference, but catch that dip right away.” My doctor told me that as soon as I notice a slip to call his office and set up the maintenance treatments (unless things change) we have decided that 3 treatments asap can restore me to the state of my initial 6 weeks of treatment. The longer a patient waits the more treatments are needed to restore remission.
I pay out of pocket for maintenance too so knowing that is what I need about once a year, I set up a special account and save a little each week towards treatment. It alleviates the stress of not knowing whether I will have the money for maintenance or not.
Every doctor has their own business model so some offer discounts, others may not offer discounts but rather a payment plan. Your coordinator probably knows the options.
Options are out there for you. Sometimes it takes a bit longer to find them, but keep trying.
Sending optimism!!!
Colleen

So nice to hear from you Papa Peter.
Thanks for your response. It can be so helpful to others when we share the steps we each take to help manage our depression. Your dedication and courage as well as fortitude is inspiring. Thanks for sharing!
I hope as you proceed on your journey things continue to improve.
Please stay in touch as it is nice to have your input and wisdom.
Sending support and gratitude!
Colleen

Hi edr16834:
I am a patient who had TMS and contribute to this site often.
In short, TMS was life saving for me and my depression is in remission after 60 years.
I would be glad to share more of my journey if you are interested and/or answer any questions you have.
I can explain how I got involved with this site and why I stay involved.
I know Martha Rhodes personally and can attest that she too is a “real patient”.
Let me know if you would like to correspond through the site with my intent to offer info and support. I can speak to my experience as a patient with no professional affiliation. I feel so grateful for my response to the treatments, I want to support others as they make a decision and/or engage in treatment.
Thanks for verbalizing your concerns.
Colleen

Papa Peter:
First I would like to express my gratitude for your service to our country and for the freedom I enjoy. Thank you.

I am a 66 year old patient who had TMS 6 years ago and had a very positive outcome after a life-long battle with depression. I wondered if you ended up having treatment on the right side for your anxiety? Are you finding that your lift from depression is occurring at a slow steady pace or was it quick? What else do you do to manage your depression and anxiety? I ask because I find I need a multifaceted approach to managing my brain health and any ideas or processes we find that supports health, when shared, may help others (if you don’t mind sharing.)
Thanks
Colleen

zsazsa:
Welcome. Glad you found this forum.
I am going to give you the short side of some info. Depression is a chronic illness. Some people who have TMS treatments never relapse and some do. Many of us who do relapse undergo booster treatments. Have you heard of TMS booster treatments? Booster treatments are follow up treatments when depression starts to reoccur after the initial course of treatments has been administered. Most often only a few treatments are needed to restore the previous recovery level. For example, I know one person who goes once a month for one booster treatment. I go once a year usually in May for 3 treatments and I am good for a year. The key from what my doctor and TMS coordinator advises is to schedule and receive treatments as soon as you recognize the first signs that your depression is reoccurring. The quicker you undergo treatments, most of the time, the less treatments are needed to restore your previous recovery level. The longer you wait it is very possible the more treatments you will need. Everyone is different and I am sure others will have more information as each response to TMS is as individual as we all are. You are right on target to have already called the treatment center. Even though boosters may be needed, they are quite effective. Good luck and please let us know how you are doing and your course of treatment. Sending good thoughts.
Colleen

Mass:
So glad to hear that TMS improved your quality of life.
You raise such good points so thanks for sharing. Every post will speak to someone. I never had the ah Ha moment either. After treatments ended my depression improved step by step for 9 months. What I realized and you speak to when you talk about changing negative thinking is that TMS is not a miracle cure for depression and/or negative thinking. First depression is a chronic illness for most, some people do go into remission and don’t need boosters, but many of us do. Second I agree with you about other issues needing to be addressed. Impulsivity, thinking patterns, attention to physical health, realistic expectations about life and TMS, etc., are all part of improving the way we live. Successful TMS can provide a pathway that allows for a more positive intent when we are addressing these issues.
Good luck and I hope you continue to contribute by posting.
Have a nice day.
Colleen

• This reply was modified 7 years, 8 months ago by  colleencasey.

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.
Colleen

Hi luvmipuppy:
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.
Colleen

Yes. That is key according to my doctor. As soon as you recognize that depression is setting in go for treatment. I only need three treatments a year each spring and I am good to go for the year. Others are different. But identifying it early is very helpful. Good luck.

Hashmael
Do you have a reference to that study that you referred to just above my post? I would be interested in reading it.
Thanks

Lbouchard619
Below is a website in which a doctor and a university that he works at is identified. You may be able to contact him as he has worked with the machine you are asking about
http://www.news-medical.net/news/20150828/FDA-approves-MagVenture-MagVita-TMS-Therapy-system-for-treatment-of-Major-Depressive-Disorder.aspx
The problem with not finding much info on this machine is that it just received FDA approval a year ago this month. It will take time to gather information on the effectiveness and efficacy of treatment. It is frustrating. But it is the methodology used to gather data. Time and info gathering are the critical elements.
Just wondering if your husband has booster treatments on a regular basis for maintenance as opposed to undergoing (and I am assuming here) a full round of treatments periodically?
Have a good day.

Keep_Hoping and Kate:
First I am so saddened when I hear that TMS did not work for you. I have a difficult time understanding the whys of this treatment when it works so well for some and not others. I take a step back sometimes because it seems so damn unfair. Sorry to swear but no other word comes close to the depth of disappointment.
I will say this after being in the despair of depression for 60 years. There is hope that soon there will be more understanding about depression, the structure of depression in the brain and more effective treatments. Scientific/clinical studies are occurring globally at a more intense rate now more than ever before. At the NAMI National conference that was held a few weeks ago, there was a presenter who said that even ECT treatments are more specialized, are not necessarily being administered bi-laterally and the resulting memory loss has been reduced. So research is being done which is improving the understanding of how the brain structure of depression works.
I am going to suggest that you may want to go to google alerts and plug in a topic such as research on depression. You will routinely receive the most updated info on research on this topic. It can be quite helpful. Also connecting with peer support groups and organizations such as NAMI can help support you and family members through this challenge. There are so many people and organizations that support those facing the challenge of brain disorders.
I hope this is helpful. Please stay in touch.
Colleen