| T O P I C R E V I E W |
| jennypeanut |
Posted - 01/13/2013 : 11:59:08
Hello again. Yes, here I go again with the anti-D topic...
I know that in order to fully heal from TMS we need to get off the meds used to "help" the pain. Concerning my physical pain I have done this and had the experience many speak of - one day I noticed my pain was gone. It has been incredible really. Many of you have helped me over the last 9 months or so. I've talked before about my use of antidepressants.
12 years ago I saw a psychiatrist. I am one of the TMSers with severe childhood trauma so I'm in that percentage Sarno talks about. I have been in and out of talk therapy for 20 years now. Anyway the psychiatrist (of course) put me on an antidepressant that "worked" till about 3 years ago. Since then I've tried 4 others (and am still on one now - cymbalta). I'm extremely frustrated because they mostly make me feel "drugged up". I know most of you will say it's all placebo anyway, but they do make you feel something. Mine have made me feel out if it, forgetful and extremely sweaty (all common side effects). I hate it. One of my main issues is anxiety stemming from health fears. So you give an antidepressant to help someone deal with health anxiety and the drug causes health issues, which increases the anxiety. Ironic, eh?
So, I've let the anxiety get the best of me and looked on the internet about long term side effects of these meds and have found frightening things. I know this is counter-productive to healing. I know. But I've done it and freaked myself out. I've also read horror stories of people coming off cymbalta (even the right way), and speculations as to weather the brain can even manage itself once off of them.
One of my family members has been diagnosed with early onset dementia. I know - a "dis-ease" but I still fear it. Because the one I'm currently on makes me feel very forgetful, I often wonder if it's permanent.
As you can tell, I'm not in a good place. Have any of you come off anti-Ds after long-term use?
Of course I would only come off under Dr. supervision but I doubt my psychiatrist will even work with me. I feel like psychiatrists hook you into the drugs - coming off of them can be such a nightmare - and before you know it you are basically hooked for life. Money for them, money for the drug companies.
Please don't tell me anything to freak me out. I'm already in that state. I just need some solid advice/opinions. I fear coming off of them - - - |
| 20 L A T E S T R E P L I E S (Newest First) |
| chickenbone |
Posted - 01/21/2013 : 18:32:04
Plum, thanks for mentioning about the essential oils. I actually did use some of them for awhile and it did help. When I ran out, I just never replaced them. I think I will use them again.
I am getting some great ideas from the forum. Thanks to all of you.
Also, I just dug out my Doreen Virtue Angel Terot cards. I think I am going to begin using them before I go to bed. |
| plum |
Posted - 01/21/2013 : 12:43:02
chickenbone, how magical to live by the sea. My soul always feels better by the ocean.
With regard to insomnia, which I have known well, have you tried essential oils? They are very soothing and many have gentle, sedative properties. I like to light candles, burn the oils and bathe in them each night. It's a ritual that helps me a lot. The oils I favour are lavender, marjoram and vetivert. You can use valarian oil but I find the aroma overwhelming. I do take valarian root extract which is fabulous for sleep problems and mild anxiety. |
| plum |
Posted - 01/21/2013 : 12:30:11
Cheers Tom, I appreciate this as it's always rousing to the spirits given that Parkinsons is one of the most misdiagnosed illnesses of all. What the experts don't know is legion, but they have a tendency to claim anyone who heals never had it in the first place.
Interestingly, like back probs and MRI's, it is often diagnosed following a scan anomaly (PET, CAT, the animal du jour) although the evidence is ambigious at best, and yet when someone recovers, the initial scan results are deemed irrelevant.
Top of my head I can name two former sufferers (one of PD, the other MS) who both cured themselves completely of these incurable diseases and in large part they attributed this to emotional factors. |
| chickenbone |
Posted - 01/21/2013 : 11:06:19
Jennypeanut, thanks so much for the info on what your sleep therapist told you to do. I am thinking about spending the last hour before I go to bed outside on the terrace and away from the TV, which my husband always watches at night. I think sleep anxiety is a big part of my problem.
TT - Thanks for posting the sleep article. This makes me think that I have created too much sleep anxiety for myself. I just need to find something peaceful to do when I awaken in the middle of the night. Maybe I will just go outside. We live on the Pacific ocean and there is nothing else around our house. I can sit by the ocean and just relax. I love it when the ocean is really rough and the wind is high. I cannot do any type of reading because that will keep me awake. |
| tennis tom |
Posted - 01/21/2013 : 06:30:14
quote:
Originally posted by plum
... My boy is currently weaning himself off his Parkinsons medications, a lone venture and one based on our belief that he can recover. Five years of life in the trenches convinces me it is very likely an extreme manifestation of tms.
Could well and likely be TMS. Time for a tommy TMS anecdote during a break in my segmented sleep. There was a gentleman at my club who would come daily to swim there. He said he had "Parkinsons". He had been a university violin professor. He was very intelligent and made good investments in the stock market, I paid attention to his tips. For years I would watch him arrive at the pool with the assistance of his wife. He would travel from the hot tub in a halting spastic like headlong run. It was frightening to watch, I was always waiting for the day he would stumble, trip and break something--he never did. He always stopped and jumped into the pool. He would do the same headlong run back to the locker room headfirst looking like he was out of control about to fall--he never did.
I remember once giving him a copy of Sarno when I was in a more proseletyzing mood. He took it and gave it back and said to the effect it was very interesting like most people who don't buy into TMS do.
One day he told me he'd just come from our local "one of the best teaching hospital's on the planet" and said they told him he didn't have Parkinsons. I asked him what the docs on the hill told him he had? He said they didn't know. |
| plum |
Posted - 01/21/2013 : 04:22:56
My thanks to all who've contributed to this thread for it's been an invaluable source of information for me. My boy is currently weaning himself off his Parkinsons medications, a lone venture and one based on our belief that he can recover. Five years of life in the trenches convinces me it is very likely an extreme manifestation of tms.
As an aside, fully accepting tms protocol, I believe mindfulness regarding diet and supplementation is important if for no other reason than intense emotional states, especially long-term, are exhausting for the body. Replenishing and nurturing ourselves is a form of self-love, not to mention good sense. I view this as distinct from taking something to *cure*. |
| tennis tom |
Posted - 01/20/2013 : 23:39:03
Your very welcome, I think Balto found this article originally. It's given me a new outlook on sleep/awake. I don't worry about it anymore. Studies of marathon runners showed pre-race insomnia did not effect performance times. That's proof to me that it's not a problem unless we think it into a problem due to societal norms creating TMS pressure. If your mindbody needs sleep you WILL sleep. I've become much more productive now. I'll turn on the tennis channel or a motor sports channel, the computer and read a magazine or organize stuff--I no longer worry about it. After an hour or two I get sleepy and zzzzzzzzzzzzzz
zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
zzzzzzzzzzzzzzzzzzzzzzzzzzzzzz |
| jennypeanut |
Posted - 01/20/2013 : 23:23:58
Wow! Fascinating! Thanks Tom! I often take "2 sleeps". I fall asleep a lot with one of my kids when I lie down to read stories. I am ALWAYS very rested even after being awake 1 or 2 hours in between. Weird! |
| tennis tom |
Posted - 01/20/2013 : 23:13:47
Not sleeping "normally" may be normal, I'm dredging up this article for those who may not have seen it:
http://www.bbc.co.uk/news/magazine-16964783 |
| jennypeanut |
Posted - 01/20/2013 : 22:44:25
Chickenbone - I too have had major insomnia issues - Ambien didn't touch it! Thank goodness as I now know that is habit forming. I actually take Trazodone in addition to my antidepressant. I am also weaning from it, but have been on the lowest dose possible. I've been off of it before. I know people on here are convinced that all drugs are placebo, but I have forgotten to take my Trazodone and been unable to sleep so I know it's not. Anyway, I'm not trying to get you on a drug or anything, just letting you know I get the insomnia thing. I have found that my insomnia is due to a revved up mind. Or as Ace says, a strain. The (good) psychiatrist that I see actually put me on a sleep hygiene plan - she says for 1-2 hours prior to bed I am to not look at any screen such as a TV, computer, phone, tablet, etc. She said this stimulates the already over-stimulated (strained) brain. She even described the physical location of the stimulation. The plan involves doing something soothing and pleasurable during that 1-2 hours before bed: reading (on paper or a kindle without backlight), taking a bath, burning candles, etc. And I include verbal affirmations now! Also no eating during that 1-2 hours, and do not exercise after dinner. So, that seems to help me. Actually it's hard to stick to it because I have night owl tendencies.
Anyway, I think insomnia is part of TMS (anxiety) and worrying about having insomnia is definitely TMS. This worry creates anxiety when falling asleep, making you wake up more! You may not necessarily feel anxious, but those thoughts or expectations that you will wake up actually wake you up! At least that's how it is for me. What about adding a verbal affirmation that is something like "I sleep soundly and peacefully all night". I don't know. Just a suggestion. |
| bryan3000 |
Posted - 01/20/2013 : 20:17:56
Thanks Dr. A, nice roundup of the situation...
Like I said, I avoided the AD trap mostly because my first experience was god-awful after one day, and I pretty much resigned to finding another way.
Unfortunately, that was wound up being Xanax from another doctor. Took tiny doses, and believed I would come off with no problems.
It took me about 18 months after quitting before I (mostly) believed the increased anxiety and physical problems from the drug were out of my system.
I had a very extended withdrawal experience, and before I had it... I probably wouldn't have believed it possible. So, it wasn't a placebo.
Hell, looking back.. I still can't believe it happened. I won't bore you with the evidence of how I know, but I know. (As do scores of others across the planet.) |
| chickenbone |
Posted - 01/20/2013 : 18:38:48
Lori, I never took antidepressants for depression, but for insomnia. My doctor gave them to me after my first husband died because I could not sleep. They still don't help me get to sleep, but once I do, I am able to stay asleep and feel rested in the morning. I stopped taking them successfully twice, once for about 10 years and the last time for 2 years. I did ok and it was not hard to quit. Then about 5 years ago, we moved to a city in Panama that is really, really hot. I never did well with hot weather. I wasn't taking amitriptiline then and had not taken it for 2 years. I don't know what it was, the stress or the heat, but I had a spell of insomnia that was unbelievably bad. I didn't sleep much at all for 2 weeks. I felt horrible. I tried sleeping pills, but they did not work at all. Then I tried the amitriptiline (25mg) again, but did not think it would work. But it did, almost right away. Since then, I have often gotten down to 10mg, but always end up with the 25mg during times of more stress.
Also, 3 years ago, I began getting a lot of really weird symptoms, frequent urination, dehydration, a lot of sore throats, GERD,bad allergies, heart palpitations, some tachycardia, brain fog and panic attacks. My husband (a doctor) and I with my Endocrinologist, figured out that I had a parathyroid tumor and I had surgery last September. After the surgery, most of the symptoms went away. But I still have the insomnia and it is worse than before. It seems like the better I feel, the worse my insomnia gets. I seem to have a manic mind and it really is hard to settle it down. It is like the strain that Ace1 talks about. I have accomplished several of his keys to healing, but that one is really hard for me. I try to monitor my mind most of the time, it can be tiring, but it helps a lot. However there are times when one of my "triggers" to my childhood awakens some dormant neurons in my brain and it goes through it's fear/anger/anxiety routine. I watch as all of this happens and try to stop my brain from going through it's routine again, but sometimes I can't get it to just let go.
I work a lot on my diet. We eat very fresh food here in Panama and grow a lot of it ourselves. I usually eat a very well balanced diet and take supplements for the osteoporosis that was caused by the parathyroid problem. I am not worried about the osteo and it is not painful. My pain is caused by my mind.
Sorry to dump on you.
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| Dr James Alexander |
Posted - 01/19/2013 : 22:32:52
Bryan3000. being a psychologist (not a psychiatrist) i am not a prescriber- i believe in some American states that psychologists can prescribe psych drugs, but not in Oz. And i wouldnt prescribe even if i was allowed to. I have suggested to several clients who were considering going on to antidepressants to get the genetic test first, so they can bring some science into the enterprise rather than just the standard Russian roulette. Those who have done this have obtained a list of psych drugs which their system can metabolise, and a list of those which they cant metabolise- they've chosen to go with the latter, and havent experienced problems as a result. Without the genetic test, it is basically a toss of the coin as to whether anyone will experience a therapeutic effect or an adverse effect.
In regards to the 75% level of accuracy of the tests, this is based on plenty of research in pharmacogenetics (not my research). Our genes (leading to particular loadings of specific liver enzymes) explain around 75% of the differences in outcomes that people experience from psych drugs (ie. some doing well, some doing badly). The remaining 25% appears to be made up of factors such as exposure to environmental toxins (apparently, these can 'stress' the same metabolic pathways, meaning that your system is unable to deal with specific drugs). So, if a person is genetically able to cope with an SSRI, but if they have had a lot of exposure to environmental toxins (eg. some war veterans), it may mean that their system cant cope with the drugs, and they may suffer a build up of the chemicals in the blood supply which gradually effects them over a period of time, resulting in adverse side effects, e.g increased anxiety, worsening depression, sleep problems, etc. Peter Breggin also points to research which suggests that over a period of time, SSRIs are able to hamper the functioning of the specific liver enzymes which are used to metabolise them. As such, an 'adequate metaboliser' may be reduced to the same level of metabolic activity as a 'poor metaboliser'. This effect (of the SSRIs) would also constitute part of the 25% of the variance in outcomes which cant be explained by the genes alone. Hope this clarifies. As with plenty of research nowadays testifying to neuroplasticity (the ability of the brain to change its functioning and structure in response to experience-both internal and external experience), it would suggest that for most people most of the time, their brains are able to ultimately bounce back and resume normal functioning after the cessation of antidepressants- how long this takes is a pretty individual thing. I usually see people feeling noticeably better (if they have been suffering adverse side effects) within 3 months of coming off the drug; however some people have said that even though they feel progressively better as the months go on, it has taken them 2-3 years before they have felt really 'normal' again. It is very individual, and one person's experience doesnt necessarily apply to another person's.
James |
| lmcox |
Posted - 01/19/2013 : 11:00:32
No problem! Believe me, I totally sympathize with you. I actually think antidepressants can be helpful in treating/ curing The TMS mind body syndrome, as they can at least help you get ahold of your mind for a moment/ get it to slow down enough for you to actually teach it something. The key is finding the right one that works with your body, and the test helps with that.
Totally call and talk to the people at Genomas. I found them to be very helpful.
By the way, have you tried high dose fish oil as an anti D equivalent? |
| chickenbone |
Posted - 01/18/2013 : 18:35:53
Thanks a lot, Lori. |
| lmcox |
Posted - 01/18/2013 : 16:27:27
I think you have to have the test performed at a lab in Connecticut, but it's actually really easy to get to CT from NY (a short train ride). You can have your doctor fill out the paperwork and "prescribe" the test, then they work with the lab to get the results. Hope that makes sense.
Here is the main website for the company that does the testing: http://www.genomas.net/contact.php
Here is the contact info (ask for Teresa): http://www.genomas.net/contact.php
Hope it helps!
Lori (LMCox) |
| chickenbone |
Posted - 01/18/2013 : 15:51:04
Yes, Imcox,
Any more info you can provide would be greatly appreciated. I would like to have this test done when I visit the US this summer. Can I get it done in upstate NY or in Miami?
Thanks for the information.
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| lmcox |
Posted - 01/18/2013 : 14:29:01
I have tried almost every anti-D out there, and while I think they do work in limited ways to keep obsessive thoughts under control, I also want to share a great resource with you that a smart (!) pDoc shared with me last year.
So, as it turns out, not everyone can metabolize every type of anti-D, so some of them, your body is just going to reject. If you have TMS, this would most definitely exacerbate your anxiety/ health issues. Just a quick look at www.askapatient.com will confirm that many of the people on there have TMS, then take high doses of antidepressants, which make them so much worse.
My doctor mentioned this test: http://www.genomas.net/phyziotype-hilomet.php. I got the test, and I turned out to lack the specific liver enzymes necessary to metabolize almost all of the anti-Ds. This was actually very helpful for me to know, because it made my recovery more MY responsibility, and it made me stop wishing and hoping for some "magic bullet" that would stop my symptoms.
I think you have to go to Connecticut to get the test, but if you've been on a large number of medications and are wondering if you'll ever find one that works, it's definitely worth getting. Just in the past year, they've expanded the test to include everything from antihistamines to all kinds of pain meds, so it can actually improve your quality of life on many fronts (not just psychiatric).
Hope this helps. Let me know if you'd like more information about the test (I have a contact at the company who is great). You do need a doctor to order it for you.
jennypeanut- get the test! If Cymbalta is making you feel "drugged up," it could be that your liver is not metabolizing it correctly, and that a switch would help you heal your TMS (and get off the drugs for good).
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| bryan3000 |
Posted - 01/17/2013 : 23:48:41
Late notice, but Dr. Breggin is on a syndicated show called Coast to Coast right now. (Sort of a fringe topics show to say the least.)
It's on our local AM here in Los Angeles.
Just started if anyone wants to listen. (10:45 pm pacific) |
| bryan3000 |
Posted - 01/17/2013 : 16:44:41
Dr. James,
I think this is long overdue, and I was also urged at the first sign of my anxiety disorder to go on a psych drug. I was put on Prestiq and was suicidal by the second day.
Obviously, I got off... never tried another again. (Of course, I didn't manage to avoid the Xanax, which was like a slow trip to hell and back, even at low doses.)
How much first hand experience have you had with prescribing using this method? Is the 75% effective figure yours, something published or both?
Purely curious. My days of medication in that sense are over.
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