Posts Tagged ‘tms’

Appeared in the Boston Herald 9/22/2014.

Appeared in the Boston Herald 9/22/2014.

I was most pleasantly astounded by the results I received from the course of TMS (transcranial magnetic stimulation) I completed in June 2014. (Thanks again to Dr. Bruce Kaster in Needham MA and his wonderful nurses that administer the treatments.)

I felt better than I had felt in decades…for about 7 weeks. 

Now, the depression has returned. Full force. The F5 tornado has enveloped me again. And no one gives a damn. And if I had a quarter, I have no one to call that cares – yes, that is a reference to a well-covered country song…)

I send my [dripping with sarcasm] “thanks” to the resurgence” of my debilitating depression to my insurance company (Harvard Pilgrim) and every ignorant individual that makes decisions about peoples’ lives without even doing their own research or listening to those that have been helped by treatments that insurance companies “dismiss” as “sham, ” unproven” or “invalid.”

Why?

They refuse to let people that are helped by the treatments continue with maintenance treatments recommended by those that have done the research on TMS. 

Simply put – THAT IS INSANE.

So, I suffer, my husband suffers, and the insurance company spends more and more money on doctor visits and treatments they DO approve that DO NOT work.

As someone with genetic drug resistance (my body doesn’t metabolize drugs properly, which causes harmful and miserable side effects), I am literally left without options. I cannot take the medications offered for depression, anxiety, and PTSD. I know. I have tried more than 20 (twenty) of them over the past 3 decades. All kinds. Even “off-label” usage of anti-you-name-it drugs (when that was allowed by the FDA…shhh, don’t tell them, it’s STILL being done!)

I refuse to let my brain be mangled and disintegrated by ECT (electroconvulsive shock therapy) – odd how the FDA breezes past the myriad of reports of general log and short-term memory loss, “inability to recall autobiographical facts,” personality changes, loss of intelligence (measured by IQ points by those in the white coats). Why be treated just to be left live a life that is truly no longer your own? (Who am I to make this statement???? I base everything I say on personal knowledge  – in this case, personally knowing some sad humans that have suffered through this archaic form of treatment and become mere shells of whom they used to be – my education, my work experience and my ongoing research into treatment alternatives for depression and PTSD.)

So, as an alternative to the TMS treatments I NEED but cannot afford since insurance deems one course of treatment “enough” for a lifetime and denies all requests for any follow-up care despite professional recommendations for such care, I ordered the famous “Fisher-Wallace Device” (also NOT covered by insurance). Basically, it is a simpleTENS unit (powered by AA batteries!) that is allegedly modulated for various wavelengths for different ailments and claims to treat everything from chronic pain to migraines. And  – the FDA approves of this device!! WHAT??? And, the FDA allows them to market as “an alternative to TMS.”

BULLSHIT.

I call BULLSHIT.

Why?

I have been using this thing for 3+ weeks now. My insomnia is worse. I cannot sleep at night  – now, I get incredibly tired during the day and MUST sleep  – where ever that may be – so I am hesitant to leave home. I average 2-3 hrs of sleep per 24 hr period. Real healthy, huh Harvard Pilgrim??

My migraines, which had abated thanks to the TMS, are back in full force – 3-4x/week – making it impossible for me to drive at times. Thanks F-W Device. 

Everything from the cheap sponges that barely fit into the plastic holders that I have to wet enough so it will send the electricity “through my hair” (SPONGES?  This is like a “One Flew Over the Cuckoo’s Nest” flashback), to the way the lights flash on the unit even when the sponges fall off out from under the cheap elastic headband (they are supposed to flash only when “properly placed” per the instructions). And, not even a month of use and the headband is already stretched out of shape. What the hell is this thing? Seriously. I cannot believe this is something that is allowed to be sold on the open market – with a recommendation from “any medical professional” (including massage therapists, acupuncturists, chiropractors, physical therapists, etc.) – that claims to be a cure for a long list of ailments. The word” snake oil” comes to mind. As does the word “SHAM.” 

This is the perfect device for someone that will feel better if they are using something that feels as if they are being “treated” by an actual medical device – ya know, the good ol’ placebo effect.

I am not one of those people.

I am now just simply appeasing my husband and will use the thing for 45 days than demand my money back (less their insane $70 fee they charge for the return of the unit – oh- and they won’t credit your credit card back – they send you a CHECK. Wow – get with the 21st century folks!!). The same types of units can be purchased for less than $50 on the internet. This thing cost me more than 10 times that amount. 

I am probably going to stop my counseling sessions as well. It has reached that point of me just sitting there and being told I need to change how I think about things. Ummm, I WAKE UP depressed. I EXIST depressed. I don’t have to think about anything. 

No one had better mention meditation, yoga, Qi Gong, Tai Chi, Tong Ren – OR ANY OTHER PLACEBO-ESQUE THING I HAVE ALREADY TRIED. I have spent 35 years trying everything to feel better – to be “happy.” 

I did find something that works – TMS –  and, that essentially proves that there is something screwy with my brain chemicals – but I am not allowed to have it. Noooooo. I’m not rich enough. I’m too old. I don’t have the intrinsic value that other human beings have. Ask the insurance company that we pay for “coverage” – along with the government, they don’t think I am worth the cost of the treatment (but yet they give free care to people that aren’t even taxpaying citizens and consider them more of a priority and find it more ethical to offer FREE care to them instead care of their OWN people that have been and ARE paying for care).

Ouch – it really puts things in perspective. It really shows that no one really cares about anyone else. It is all just political posturing. 

If I had the physical ability to go back to work in biotech/medical research, I would work my ass off to prove how cruel it is to withhold care from someone that desperately needs it.

Take away message: don’t waste your money on a Fisher-Wallace Device.

Better to save it for your body disposal expenses. (Yes, there is a cost even if you donate you body to science after “demise.”)

 

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This is NOT going to be another rainbow, unicorns and bunnies post on using some natural substance, or some new form of yoga or meditation or voodoo acupuncture.

This post is about Transcranial Magnetic Stimulation (TMS). I will not bore you by droning about how it works and the successes it has had treating major depressive disorder (and migraines). You can do that here, an update here (this is a Medscape article – it may require signing in, but I’m sure that anyone reading this blog would have the sense and chutzpah to already be a free Medscape member! – or, here’s one last link from the company that made the machine used during my treatment course.

My depression is pretty much just the usual chemical state of my brain – BUT – this baseline depression has been grossly intensified by some exogenous events of late. My depression over the past year feels as if I was trapped inside of an F5 tornado.

An F5 tornado (photo source unknown)

An F5 tornado (photo source unknown)

Imagine that for just a moment. Try NOT to pay attention to all those things whipping around your head at impossibly high rates of speed – the heavy, black debris that keeps you from seeing anything but what is swirling around you – and try NOT to feel the fear, anxiety and despair about your precarious situation.

Now imagine someone trying to “snap you out if it” with platitudes, CBT, affirmations – or telling you to meditate to feel better. (I’ll bet you’d like to imagine crashing into them with that F5 tornado, huh???)

[Just a hint, people – never tell a depressed person to “snap out of it,” “grow up,” etc. It is a thoughtless, selfish act of cruelty to do so. See this link from psychcentral.com for a more complete list of things NOT to say to a depressed person.]

I have tried at least 19 different antidepressants over the past 30 years. I have tried every alternative therapy. Nothing has worked, or, I had horrid side effects  to many medications, or, how my body processes them (due to several genetic mutations I have known as “MDR” – multiple drug resistance). Hey, I didn’t choose my genetic makeup. My apologies to the medical community.

So, when it became obvious that I had to do SOMETHING about how depressed I had become over the past year, I was given 2 treatment choices (covered by insurance): TMS or ECT (electroconvulsive shock therapy). Of course, I chose TMS after much research into its origin, efficacy and safety. (And, I have never met a person that went through ECT that came out of the treatment course with their personality and intelligence intact. Nope- not the treatment for me.)

Bottom line: the TMS worked!!! I was a new person in about 4 weeks. Seriously, I can’t EVER remember feeling as good and as “normal” as I did – and it was awesome!!! My sleep and appetite improved. I wanted to do things and go places. I was even able to tolerate my chronic pain a bit better as well. And, I had much fewer migraines!

What is the treatment like???
It’s 36 sessions – 30 of them consecutive (5 days a week for 5 weeks), then 3 per week for the next 2 weeks.
I sat in a reclining chair, a cross between a big dental office chair and one of those used in blood-donor labs. I had to put those squishy ear plugs in my ears since the decibel level of the treatments can be loud. White paper tape was placed on my forehead to mark the positioning of the contacts. The portion of the machine carefully placed against my head was relatively small, and had 2 contact points, one on the left side of my head, the other a bit towards the right side.. A chime sounds to let me know the magnetic pulses were about to begin. (I liked that – with my startle response I would have jumped out of my seat if the pulses just started up sans warning!)  I will be honest. The treatments  – 4 second “trains” of magnetic pulses, followed by a 32 second respite in-between – were quite “uncomfortable” at first. It was not a “tapping” sensation as described in the research literature. It felt more like a repetitive bee sting – or a woodpecker with a large, sharp beak pecking at my head for those 4 seconds. As the treatments progressed, I grew accustomed to the feeling. Each session lasted about 50 minutes. Watching TV or chatting with the nurse during the treatments helped me acclimate to the weird feeling. I am grateful I had such kind, engaging nurses to monitor the treatments.

The issue with this treatment is this: the effects don’t “stick” with everyone. After less than one month of being without treatments, I already feel that tornado approaching again.

Twice weekly maintenance treatments are recommended by advocates of the therapy – and I now can completely understand why now that I feel the effects wearing off – but insurance doesn’t cover them. Of course not.

Each 50-minute treatment is $350 w/o insurance coverage. There is no way we can even consider maintenance.

Well, at least I got to know what it was like to feel “normal” for about a month. And, my husband had a happy, fun wife for a brief moment in time.

I’m grateful for that time, and to my TMS doctor for helping me decide to try the treatment, and helping to get the treatment approved by the insurance company

I honestly think the insurance company would just rather see me dead. There really is no alternative for someone like me. I CANNOT take any drugs. 30 yrs (off and on) of talk therapy hasn’t done much more than give me something to do on a regular basis.

As the tornado envelops me once again, I will try to remember what “normal” felt like. I imagine I will be way  too busy dodging self-hatred and anger at myself for being this “in-valid” person, like before. And – mustering the strength to “put on the mask” so others can’t see my pain.

If insurance companies would cover maintenance treatments, think of how much money they would save, not having to pay for the traditional care of someone like me…all that useless talk therapy/group therapy, etc….and all those medications that were useless or caused more problems… I think about how much better my life would be. And how much better my husband’s life would be. And it makes me even more depressed knowing that I make my husband miserable because of my health conditions.

Based on what I have read about others’ experiences with trying to get coverage for TMS maintenance treatments, the insurance companies pretty much stop short of saying they hope we will just off ourselves, as that will save them money.

If I can’t fight that tornado anymore, I hope that Harvard Pilgrim health insurance throws a party so they can celebrate how they selfishly helped one more person leave the planet. I want them to know that if they weren’t so ignorant about people with conditions like mine (just another zebra), I would be alive, and be a happy person with a happy family. But thanks to the judicial-esque decisions of their “death panels” (just an affectionate term for their grievance boards) – they will decide that I’m simply not worth it. My demise will be their fault. They left me with no other option. Oh, and thanks to the US healthcare system as well for supporting their ignorance.