Posted by Zellie on January 3, 2004, at 23:28:27
In reply to Re: effexor changes in brain funxn. Help? » mom_cheeks, posted by zinya on January 3, 2004, at 21:53:18
Zinya:
I, too, have learned how varied each person's experience is. I also read (and was quite astounded by) the wide range of effects that people were experiencing from Effexor. I wanted to be very well informed before beginning (and during) any treatment regime I agreed to.
I am even more astounded by the number of people I have met and spoken with personally who have done no research, and are very ill-informed of the possible side-effects of the meds they have been put on. In some cases, their physicians seem equally ill-informed and even passed on to their patients info that is incorrect. In these cases, it was G.P.'s who were their docs. I have heard of many completely contradictory statements that have come from the doctors of several friends and aquaintances of mine.
My hope is that the medical profession will be continually trained in the science of the various drugs on the market. I hope that they will also be required to better inform their patients of side-effects that they may expect to experience (perhaps they are required already...I am not sure why some of my friends (and I in the distant past) have been prescribed meds for mood disorders with little or no mention of side-effects).
Moreover, I know of people (two of my sons, and myself included) who have been prescribed meds for mood disorders, with no requirement of a follow-up!! When the meds didn't seem to be working, we all just gave up on them. There was no telling us about titrating up, or anything. The docs just said,"Here, take this!" We didn't know to ask questions. We didn't know we had to book another appointment if the meds weren't strong enough to make a difference. We just thought the meds didn't work on us.
With the pdoc I now see, I am diligently followed up on, and he gave me homework before beginning any meds, consisting of digging in to various resources to find out about the potential side-effects and the possible benefits, of a number of different drugs (that was when I originally found this thread, early last spring).
Although I had certain fears and reservations about the Effexor, I still felt it was best suited to my needs. I have, indeed, been very fortunate that it has worked out so well for me. Although there were effects I had initially and some that I still am experiencing (sweats, too!), I am thrilled now to be able to function at a much, much improved level. I was so severly crippled by my disorders all my life, and although I tried to learn strategies to help me overcome, it was little help.
I am now utilizing not just therapy, strategies, coaching, support groups, etc. to help me, but I am also now taking meds that are making a huge difference. I can now learn, enjoy, live, share, love and help others much, much more than I ever dreamed possible.
My hope is that, if it is not Effexor that helps you improve your quality of life, that there will be some thing(s) that you will discover that will.
Kindest regards,
Zellie> greetings after a few weeks' absence here, and happy new year to all (Kim D in particular - how goes it?),
>
> As some hear will know but newcomers won't, i started Effexor last May 30 and probably hold the record to date for slowest titrations upward (splitting capsules to move up at slower increments than the "norm"), arriving at 150 mg by late July and staying there til Labor Day - 6 weeks at 150, and then 2 unrelenting SEs obliged me to realize they simply weren't going away - as they'd lasted 3 months and the 2nd of the two became alarming.
>
> I just read two of your posts, already mc - and also gummybear's uptake (that's different from reinhibitor uptake :)) -- sorry, bad joke, lame head here, fairly flued out here in recent days ...
>
> Anyway, i read your posts and i confess to having felt some envy. I had the same sense of 'crossroads' you did upon first embarking on Effexor, hoping against hope after numerous other failed AD attempts over 15 yrs off and on, and I am truly happy for you that it turned out to be exactly the best scenario. It's so important that such stories be told too. I've been monitoring this site off and on for over a year (at first it made me delay starting the Effexor for months in apprehension at teh SE's but then i came to a sense of hitting further 'bottom' and started also with a "what the hell" kind of "nothing ventured" added sense at the beginning.
>
> But the two biggies for me in SEs include one that's relevant to your post here, so i write to suggest a modification to a statement of yours to mMarie...
>
> Namely, regarding the sweats. For me they started at 37.5, which was my 2nd level (I started with half a min. dose - 19 mg - half the granules of a capsule) ... They started to taper off after a couple of weeks at 37.5 (staying at least 2 weeks at each new level) and then going up next to 56 first before on to 75, but from 75 mg onward, the sweating was daily and relentless. Night sweats to the point of waking me at 3 am having to change clothes cuz nightshirt, undies, sheets, pillow . everything just sopping... By day, i couldn't even dress to go somewhere at times because i'd put on clothes and sweat inside them so much i couldn't stand it and would have to just rip (well...) my clothes off and call to cancel the whatever and return to wearing virtually nothing. I couldn't even dust a shelf without an instant sweat that would start dropping sweat on the furniture and making the enterprise counterproductive, and so i'd quit. That level of sweating lasted from some point in June until Labor Day and beyond.
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> At Labor Day (roughly) a second phenom added alarm to the overwhelming annoyance of the sweating. At 150 mg level in particular i started having heart rate/palpitations i'd never had (always low b.p.) to the point that just weekly gardening for an hour - i mean GARDENING for heaven's sake, a leisurely albeit exertion-using activity, was impacting me as if i'd just run the marathon. I not only would be dripping with sweat (at 5 pm, with ocean breezes etc) within 5 minutes but after working for an hour-plus, my heart would be racing so much i sometimes had to rest 15 min. befor continuing but i always ended up with such a scarily-exhausted palpitating heart that i had to start using a stool under the shower to sit on to then wash my hair for fair i would collapse, so heart-racing exhausted from the gardening. I began to realize i couldn't risk REAL aerobic exercise cuz the Effexor was turning non-aerobic into aerobic already... After a month-plus of that not letting up, that was, alas, I felt, a signal i could no longer think would go away.
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> The third thing was that i had yet to feel any boost to my energy, the very thing that had made my md. choose Effexor instead of other ADs so as to get the norep. effects for energy. Never felt a sustained energy though i did manage to rally for those weekly gardenings and -- some weeks -- able to walk daily on the non-gardening days, but then would have relapses energy-wise.
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> What makes me write here is hearing a global generalization. While i agree with those who have said here in recent posts, it's not productive to hear generalizations made to scare users, i also think it's ill-advised to make global assurances.
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> If there's one thing this board has taught me, it is just how truly unique each of our body chemistries are. There is literally no way of predicting whether one person is going to get over their sweats or not, lose sleep or not, gain weight or not, feel the postiive effects of E (or anything else) or not, etc etc. It's all gross generalizing that can set up expectations for that which winds up sabotaging -- either by discouraging some from trying or others from listening to their bodies when maybe they need to.
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> I don't know. I sure would have liked Effexor to work for me. It helps that i kept a journal of effects all the while so as to keep me from 'grass-is-greening' now as i think "gosh, maybe i could have stuck it out further and gotten to some "oasis" hurdle point. But i could also have prolonged the bad SEs dangerously. Who knows. Ultimately, it's judgment calls. And i think one thing each person needs to develop is real 'knowledge' of their own body, its signals, its antenna, its limits and capacities...
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> Because no one else can tell you whether *your* SEs will end or not, whether it would eventually start giving you rewards or not.
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> It's stunning really to realize just how unique each experience is although specific isolated SEs are shared ... but then not others, such that no one person has the same SET of pros and cons on these truly paradigm-shifting drugs for the brain...
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> I started tapering off at Labor Day, going down SOOO slowly that i'm still now not 100% off. I'm down to taking -- ready for this? -- 6 mg every 3-4 days. :)) ALMOST nothing, but not nothing. Cuz absolute nothing isn't quite ready yet. I start to feel a bit of brain zaps on day 3 or 4 since last dose, and realize i should take another... But a few weeks ago, that same was true of 9 mg and before that it was 9 mg every night still, 12 mg before that, 18mg ...
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> What this site had taught me was that going off was/is even trickier than going on, so i've taken my SLLLOOOOW-going entry and made an exponentially slower-going exit... For the most part, it's spared me the worst kind of brain zaps others had by exiting faster. I of course didn't miss all the brain zaps, but the never were "scary" at least.
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> And the thing that was scary - the racing heart after gardening - started leaving again by the time i got down to about 50 mg again... The sweating lingered on -- reduced but still annoying - to at least after 37.5 (not checking my journal here, from memory) ... I still occasionally getting a sweating thing that was unprecedented for me prior to Effexor, but nada compared to what those months on the Effexor onramp had been like.
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> 2% of users, the bulletin says, quit Effexor in controlled studies due to sweating. So there's others out there having my response.
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> It happens, just like shit happens.
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> I hope this comes across mostly as supportive - as my intent is only to encourage everyone not to overgeneralize based on their own experience while being supportive for each other and helping each other recognize certain SEs as being, indeed SEs... rather than something else...
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> The whole sweat thing leads me to a quandry still though about the functioning of these drugs which is in reaction to the post of mMarie's which you are responding to. I'll post a separate reply to it in order to pose my confusion about something she said ...
>
> wishing you all well and good '04s...
>
> zinya
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>
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poster:Zellie
thread:13781
URL: http://www.dr-bob.org/babble/20031231/msgs/296193.html