vnsdepression.com

ElizabethRNC · Joined: 30 Nov 2005 Posts: 36 Location: Tampa, FL

Having just recently joined this site in the search for information about VNS, I am just getting around to reading about some other folks' experiences with ECT. I am currently being maintained with ECT, 1 treatment about every 12 weeks. I started this series back in early June with the traditional 9-12 treatments in rapid succession and have gradually progressed to fewer and fewer treatments over time.

Before I get to my question for "the group", I would like to comment on my memory loss and other people's response to it. I am very up front with those around me about the bipolar disorder from which I suffer. I am also very up front about the treatment that I have had in the past and that I continue to have. I feel that I can be instrumental in educating people around me about this illness and help to remove some of the stigma associated with ECT and mental illness in general in our society. (Maybe it's the Nurse/Educator part of me!) Anyway, I find it very troubling when those around me blow off my memory hiccups as being just like getting older or being told, "it doesn't matter". IT SURE DOES MATTER! People who have had ECT memory loss will tell you that they also have had those more common memory problems that everybody experiences and they will tell you that they are different. I think the thing that bothers me most about ECT memory loss is that there is mental anguish associated with it. Mine and others. Simply forgetting a phone number is no big deal, but forgetting a friend's name, getting lost driving someplace that is familiar, realizing that you were someplace important that you have no memory of being, forgetting something that somebody has told you that is important to them, all these things cause me to feel pain when I realize that I've forgotten them.

I have found that it is helpful to me if I ask others who have the memory to describe it to me so that I can "hook" it and bring some of the details back into focus. I am comfortable asking my immediate family and closest friends to do this, but it is difficult to tactfully handle otherwise. For those of you who are support people, I know you are sensitive to the fact that your loved one experiences these memory problems, but please understand that the time of realization for your loved one is painful.

Wow...that was long-winded. Onto to the reason I started this entry!

Everytime I have an ECT, I have a problem with a distortion of my sense of smell. Things that normally are pleasant smelling become unpleasant. This improves over a period of several weeks. My ECT doc says that he has tried to find infomation about this, but has been unsuccessful. My regular psychiatrist has also never heard of this. Has anybody out there in computerland had or heard of a similar experience?

Betsy

Herb · Posted: Sat Dec 17, 2005 11:55 am Post subject:

Dear Betsy,

Thank you very much for sharing your personal experiences and thoughts regarding the many challenges of trying to recover as well as living with the lingering side-effects of ECT. As a long-time support person and health care advocate as well as a former DBSA facilitator I have heard many of the similar points as you have expressed.

I also thank you and I am appreciative of another health care professional who has an intermit understanding of mood disorders from the unfortunate perspective of an insider and for your proactive advocacy to educate and eliminate the stigmas surrounding these medical illnesses and treatments. I have also been fortunate to be befriended by several former nurses challenged by their mood disorders and from whom I have also learned much.

Through the years I have learned much, especially those years when I actively participated as a trained facilitator for DBSA and as a President and Board Member of a local chapter. Every meeting was and every day still is a new learning experience for me as is the description of your current side-effect from the treatment. Yours is the first side-effect of that particular nature I have heard but I would like to share some information and an opinion.

From my research and readings it is common during certain brain surgeries for the neurosurgeon to gently probe certain areas of the brain and in doing so to elicit responses from the patient, who is fully awake, such as auditory, visual and/or other sensory perceptions. It is my theory based upon your brief narrative that the ECT may well be causing a temporary stimulation of the olfactory region of the brain thereby causing sensory perception of unpleasant smells. Well, so much for my personal theories and inability to present any options at the moment to overcome the difficulties. I can state that Joyce through the years has had no similar side-effects from her therapies other than the issues with memory and cognition.

I would like to suggest the following website links where the participation regarding ECT may be much larger and you may find additional responses to your question.

The first site is run by Ms. Juli Lawrence and her site is devoted to ECT. Registration is required to view and post to the forum. The link to the site is: http://www.zaprap.org/

The Mood Garden site encompasses all mood disorders and is run by Sam. Hereto I believe registration is required to view and post to the forum. The link to the site is: http://www.moodgarden.org/forum/

The DBSA message forums encompass all mood disorders. Viewing is available but posting requires registration. The link to the site is: http://dbsa.invisionzone.com/

These starter links should keep you busy for a while.

Once again, thanks for your sharing and participation.

Warmly,
Herb
VNSdepression.com

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ElizabethRNC · Joined: 30 Nov 2005 Posts: 36 Location: Tampa, FL

Herb,

Once again, thank you for your input and the links that you have provided for me to check out. I will see to that when I have a little more time on my hands.

I'm sure that having been a DBSA facilitator has opened your eyes and educated you very quickly about many of the ins and outs of the lives of those affected by these illnesses. DBSA has been a tremendous source of information and support for myself and my support people.

Not being a very computer literate individual, I have a nuts-and-bolts question to ask you. In your response to me, you mentioned several websites, some of which require registration and others that don't. I'm assuming that this refers to having to give information about myself to view the site or post on it. Is there some reason why I should be wary of the sites that require this as opposed to those that don't? Why would some require it and others not?

Thanks for helping me understand.

Betsy

Herb · Posted: Sun Dec 18, 2005 8:56 pm Post subject:

Dear Betsy,

My years as a DBSA facilitator were extremely enlightening and a true eye opener for me. It is amazing to obtain the prospective of the patient and/or their support persons and to have found many instances of the true lack of awareness on the part of the medical professionals as it relates to mood disorders.

In response to your question I shall venture that most message forums require a registration process in order to post to the forum as part of their software design but generally many message forums are left accessible to anyone interested in reading the forum. This process is up to the discretion of the forum administrator who usually owns the website and controls the switches.

Most forums request a user name (I would always suggest a nom de plume and not your real name) and they may also request an active E-mail address to determine you’re for real and not just a hooligan. Some forums might go further and request birth date, location etc. I don’t even recall what the requirement of this message forum are other than I do block the viewing of the two personal history topics feeling that if anyone truly has interest in this subject matter and the real experiences of others they might want to take the time to participate also. I would always suggest not posting any information to the Internet that you wouldn’t want to share with the world immediately. The registration and ID is also used by some administrators to deny access to any individual(s) posting(s) when the administrators and/or moderators of the forums can no longer tolerate oppositional viewpoints as has been done to me in two instances. Under no circumstances give out your real name, address, telephone numbers, social security number and/or anything of a real personal nature over the Internet.

People also believe when communicating via personal E-mails that they are personal. They are not personal as most transmissions are not secure! If one really needs to transmit personal and/or confidential information one is probably safer doing so via fax and/or the telephone.

Please do not be scared off by any registration process as I am registered at many informational sites just be aware and take the position that you are dealing with a stranger and there is just so much you want to tell especially at the first meeting.

A word of caution that I would like to pass on to all that read this message; the Internet has been an invaluable tool and source of information in my quest to maintain Joyce’s wellness. In fact it was my research of the Internet that lead me to the VNS Therapy over 6 years ago that I presented to Joyce’s doctor who had no knowledge of the research but knew the right people to assist Joyce getting into the research study program. Just be extremely careful to validate anything that one may read and find of interest. There are more opinions and garbage as well as "alarmists" to be found throughout the Internet than one can shake a stick at and this may well include the site which you’re reading at the moment. If one finds anything of interest I would always suggest collaboration with one’s trusted, caring, compassionate, and knowledgeable and licensed health care practitioner(s).

Good luck, enjoy your search(s) but most importantly I do hope it educates and proves fruitful for you in the quest toward wellness. Although I may be in opposition to the thoughts and opinions of a number of individuals and/or websites I still think it is important to share all information whether pro or con and to be objective and unbiased in my views and to allow the readership to make their own informed decision(s).

If I can be of any further assistance, just give a holler.

Warmly,
Herb
VNSdepression.com

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ElizabethRNC · Joined: 30 Nov 2005 Posts: 36 Location: Tampa, FL

Dear Herb,

Thank you for the internet advice. Points well taken.

Betsy