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Chemically sensitive people who've had cataract or other surgeries?


Brandy

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I have had both numerous allergies and sensitivities, and sometimes paradoxical reactions to meds, since long before withdrawals (some since birth but increased throughout my life). I am not in acute withdrawal now, but believe my numerous withdrawals from various meds have increased my tendencies to get reactions to food, environmental, and chemicals/medications, although they were already increasing throughout my life and are severe enough that they're well-acknowledged by doctors.

 

I have had cataracts for many years, and they are now well past the stage where surgery is called for. I have an excellent and conscientious ophthalmologist, fortunately, but I'm concerned about the various meds and anesthetics (including what the doc said would be a "small" amount of propofol - I'd still need to be conscious enough to follow directions, he said) that I'd need.

 

I do know from experience what many of my allergies/sensitivities are from past experiences, but this (will need both eyes done but one is the most acute right now though other will probably need to be done fairly soon after) involves meds I've never had before. I will get a list of the meds the doctor feels will be needed to learn as much about them (families of drugs, additives - which account for a great many of my allergic reactions, etc.) and discuss options with my doctor prior to surgery. The new lens will be acrylic and I am concerned about that since I cannot tolerate synthetic clothing generally (and when I can, only briefly) due to severe urticaria... dermagraphism, itching that can burn like fire under my skin, hives and welts, rashes, and general systemic symptoms including chills, physical "restlessness" though not quite akathisia I don't think, and generally feeling "unwell."

 

I will discuss the substances involved with the ophthalmologist and with my PCP (who seems more concerned about reactions even than I am, since she understands the unusual degree of sensitivities I have and is familiar with the phenomenon from a few other people she knows). But I would like to discuss not only meds involved and possible options with other chemically sensitive people who have had concerns re surgery of any kind and particularly if they're been able to tolerate propofol, and especially to learn more of the procedure itself with people who have had cataract surgery. I also am still on a benzo (clonazepam) as a long-term anticonvulsant re seizure disorder, and which I may always need to be one since have very long history of being unable to tolerate or respond to other anticonvulsants. I believe I read a reference here (not sure if it was this site) about interactions between propofol and benzos; if anyone has had propofol while on a benzo their input would be very welcome.

 

btw, I do want to assure people that allergies and sensitivities as severe as mine are very rare, and that they have been medical problems for me since I was (literally) two weeks old! With many years' experience in w/d groups, I've noticed that most people by far who have such problems after w/d usually had allergies and chemical sensitivities prior to the meds and w/d (people usually have told me about these on the phone and private correspondence, if you wonder why you're not seeing those discussions here); it's usually when those are already issues that they sometimes increase when our bodies become more sensitized or where hormones are involved when endocrine system is sensitized, I think. I certainly don't want to alarm anyone that my condition is commonplace, I've read countless posts in various w/d groups and corresponded with countless people over the last decade, and this is absolutely not the norm, but it is my reality.

 

If you PM me (this is only very peripherally a w/d issue so not sure it's an appropriate topic for a w/d site, though I know a number of people here are chemically or at least med sensitive), please post a brief "I PM'd you" in this thread, since I usually receive  notifications from this site but for some reason don't always. Thanks! And sorry this post is so verbose. Mine is a very unusual situation and I wanted to make that clear.

 

P.S. re meds needed in procedures - I have found some options for dental anesthetics and filling materials, and certain meds, that I tolerated just fine. There are probably many more options, I just avoid medical procedures unless necessary. Just had some minor (not vision or dental) procedures - not the first time - that went smooth as glass and healing beautifully without problems. I'd be glad to give more details if it would help anyone, though everyone's responses to substances can be different.

I was "TryingToGetWell" (aka TTGW) on paxilprogress. I also was one of the original members here on Surviving Antidepressants

 

I had horrific and protracted withdrawal from paxil, but now am back to enjoying life with enthusiasm to the max, some residual physical symptoms continued but largely improve. The horror, severe derealization, anhedonia, akathisia, and so much more, are long over.

 

My signature is a temporary scribble from year 2013. I'll rewrite it when I can.

 

If you want to read it, click on http://survivingantidepressants.org/index.php?/topic/209-brandy-anyone/?p=110343

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  • 1 month later...
On 14/05/2017 at 1:02 AM, Brandy said:

I have had both numerous allergies and sensitivities, and sometimes paradoxical reactions to meds, since long before withdrawals (some since birth but increased throughout my life). I am not in acute withdrawal now, but believe my numerous withdrawals from various meds have increased my tendencies to get reactions to food, environmental, and chemicals/medications, although they were already increasing throughout my life and are severe enough that they're well-acknowledged by doctors......

 

Hi Brandy,  I was wondering if you could give me some help on these MCS symptoms I have recently developed. What happened to you with these, are they better? Any do's and dont's. Its so confusing and a mine field! I would like to send you some private messages. I tried to message you but it wouldn't send as you dont recieve messages ? Regards Dave

Intro - 

  • On Paroxetine (Paxil / Seroxat) 20mg since 1999 (age 18). Tapered off over 8 weeks on Dr's advice 2016 - Crashed massively (acute withdrawal) September '16 and reinstated on doc's advice. Found this site and started getting real answers! Currently doing a very slow withdrawal. 

 

Taper progress - 

  • September '16 - 40mg / December'16 - 30mg / Feb '17 - 20 mg / March '17 - 18mg / April '17 - 15mg - became paranoid / May '17-  upped dose to 20mg (kindled - developed chemical sensitivities and neuropathy in legs). 2 month hold. July '17 - 19.5mg / Aug'17 - 18.5mgSept '17 - 17.5mg / October '17 - 17mg / Nov '17 - 16mg / Dec '17 - 15.5mg / Jan '18 - hold / Feb '18 - 14.5mg / April '18 - 13mg / June '18 - 11.5mg / Aug '18 - 10mg (half way hold of approx 2 months) / Nov '18 - 9mg / Dec '18 - 8mg. (tapering too fast, having anxiety / paranoia, so having a 6 week extra hold) / April 19 - still holding at approx 7.5mg

 

Points of interest - 

  • Average seroxat 20mg pill weights 0.355g 
  • Using AWS Gemini 20 scales (seem reasonable for about £20)
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Hi, Dave. I'm set up to receive PMs but haven't received yours. But I did receive a notification about your quoting my post. I'm having a lot of problems with my PMs (and other things) since the software upgrade this site's software had recently, and the site owner and mods are working diligently on trying to solve the problems some of us are having. My PM box may be full, or if it's not it's nearly full anyway. I don't know if there's anything I can do til software is tweaked, but it's probably just as well since I've become terrible about replying to PMs and correspondence in general. So I'm more likely to post a response here on the site than do correspondence.

 

If you were using PMs because there's something you don't want online for some reason, I know the mods are working on the tech problems. The owner and mods on this site are terrific. But it what you want to ask isn't personal, it's best to use the site itself for a couple of reasons. One is that I'm burnt out on correspondence and am way overdue on replying even to my friends lol. The other is that posting about w/d-related topics on the site is it may help others with similar problems (now or those reading in the future), and also others who read the posts may have good help to offer you.

 

Since this thread was to try to find people who could tell me more about the anesthetics and meds used in cataract surgery, I think it's best to discuss your MCS questions either in your "Introduction" thread (if specific to the symptoms you're experiencing) or in a relevant thread in the "Symptoms" section if about MCS/chemical sensitivities in general. I'm too sleepy right now to do that, but please post here or in your Intro thread what your questions are (if you don't mind posting them online), and I'll transfer your questions to an appropriate thread (let me know if you have a preference) and do my best to give suggestions, OK?

 

Gotta get some sleep now!

I was "TryingToGetWell" (aka TTGW) on paxilprogress. I also was one of the original members here on Surviving Antidepressants

 

I had horrific and protracted withdrawal from paxil, but now am back to enjoying life with enthusiasm to the max, some residual physical symptoms continued but largely improve. The horror, severe derealization, anhedonia, akathisia, and so much more, are long over.

 

My signature is a temporary scribble from year 2013. I'll rewrite it when I can.

 

If you want to read it, click on http://survivingantidepressants.org/index.php?/topic/209-brandy-anyone/?p=110343

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On 14/05/2017 at 1:02 AM, Brandy said:

I have had both numerous allergies and sensitivities . . .

Hi Brandy, no posting on here is fine. Please feel free to move to wherever you feel appropriate. Ok, so here goes; my introduction sig tells of the timeline. What I need to add is about Feb I started another more conservative taper (before I found this site), but it didnt go well. Basically, I went from 20 to 18 in 6 weeks and then dropped to 15 for a further 6 weeks. I got very paranoid, and up-dosed to 20mg again quite quickly (maybe over 2 weeks). The paranoia went away but i did experince leg tingles, noticed my heart beat again etc. So it did something paradoxical to my system. I have also been experiencing a lot of suicidal idealisation again. However, on top of that I seem to have developed MCS to perfumes, car exhausts, petrol etc. I have developed food sensitivities too, sometimes after eating I get a racing heart etc. 

 

So I need some help, solutions, explanations etc, and if you can help at all that would be very much appreciated. 

 

1) last week I asked the doc for some liquid paxil, and have come up with a very conservative taper. 0.2 every 2 weeks with a 2 week hold. I have started day 3 of the swap over (15mg pil and 5mg liquid). I am having some restlessness at times but nothing like full blown akathasia i had around xmas. So, in light of this MCS addition and everything else, in your opinion, am I better to hold now on the paxil pil for a considerable length of time, forget about tapering and not "rock the boat" so to speak. I recently read the paper on "kindling" and how (if my understanding is correct) its dose changes that can start this (and keep it going ?) If so then I would be best abandoning the taper and keeping everything the same. . . no changes, no extra fuel for the fire! However, I did read something on here from another member that his MCS went away when he dropped his dose. So You can see, I'm in a sticky place . . what to do ??? 

 

Also, from what I am reading about MCS (i cant remember the paper name) but it basically a part of the brain dying and out of his 1500 patients he'd not seen one properly recover. This scares the Sh*t out of me, as I cant miss out on all the aspects of life I think that would mean. But then on BB I have read people think /see this as a symptom of withdrawal and know of people whom it has disappeared for. What happened with you, so say you had / have this and you live life to the max, please tell me your story. 

 

But more importantly please tell me your advice on what to do to a) not make it any worse b ) try and give me some rest-bite c) reverse this / make it better / go away. 

 

Once again I thank you for any help you can offer, as Im so scared and just don't know what to do! 

 

Many Thanks dave 

Intro - 

  • On Paroxetine (Paxil / Seroxat) 20mg since 1999 (age 18). Tapered off over 8 weeks on Dr's advice 2016 - Crashed massively (acute withdrawal) September '16 and reinstated on doc's advice. Found this site and started getting real answers! Currently doing a very slow withdrawal. 

 

Taper progress - 

  • September '16 - 40mg / December'16 - 30mg / Feb '17 - 20 mg / March '17 - 18mg / April '17 - 15mg - became paranoid / May '17-  upped dose to 20mg (kindled - developed chemical sensitivities and neuropathy in legs). 2 month hold. July '17 - 19.5mg / Aug'17 - 18.5mgSept '17 - 17.5mg / October '17 - 17mg / Nov '17 - 16mg / Dec '17 - 15.5mg / Jan '18 - hold / Feb '18 - 14.5mg / April '18 - 13mg / June '18 - 11.5mg / Aug '18 - 10mg (half way hold of approx 2 months) / Nov '18 - 9mg / Dec '18 - 8mg. (tapering too fast, having anxiety / paranoia, so having a 6 week extra hold) / April 19 - still holding at approx 7.5mg

 

Points of interest - 

  • Average seroxat 20mg pill weights 0.355g 
  • Using AWS Gemini 20 scales (seem reasonable for about £20)
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  • 3 weeks later...

Dave, I'm so sorry to take so long in replying. I've been sick (not w/d!) and up to my ears in problems and not able to keep up on things. I'm so drained right now I can't think straight, so bear with me this is just a brief reply right now. I don't mind your posting here, just know that it being off the original topic, it's less likely to be seen by others who could probably give you more relevant and helpful input than I can. (Especially since no one  resonded about my question about meds/anesthesia used in cataract surgery. Probably not many people here have had cataract surgery post-w/d so probably very few people read it or will.) (Actually, replies from anyone who's had such surgery might be helpful to me since then I'd have a better idea what to try to prepare for.)

 

But don't expect a crowd to read this!

 

But I'll just make a couple of points right now. One is that since you made a very small change in type of med (combination pill and liquid), I hope you've been holding at least briefly so your body can adjust to that, even though no change in dosage. People who change from one form of med to another usually benefit by doing that, since the body might metabolize the new form of the med slightly differently. As to whether you should hold longer because of the problems you had that led to this change, I suggest posting about that in your Introductory thread if you haven't already, because that is something others are experienced with but I'm not. (I pretty much did everything all wrong since my "taper" (like previous ones) was long ago and without the benefit of advice from forums or knowledge of slow tapering.

 

It concerned that you wrote:

Quote

Also, from what I am reading about MCS (i cant remember the paper name) but it basically a part of the brain dying and out of his 1500 patients he'd not seen one properly recover.

 

I have read extensively about MCS and I have never heard anything to the effect of it being a part of the brain dying! I have no idea where you read this - can you give us a reference. I certainly know of people who have recovered from it through avoiding toxins and allergens while improving their health. GiaK has written some posts here about that, and you might want to read on Debra Lynn Dadd's website, though the latter has nothing to do with withdrawal, and the degree of changes she had to make in her lifestyle can seem daunting when you're sick from w/d. But she was addressing a condition that was caused by sensitivity to multiple toxins in life but not meds.

 

The idea of MCS being a part of the brain dying makes no sense to me at all. I do think you'd be wise to taper very slowly and take holds when necessary, to minimize stress to an already sensitized nervous system.

 

Maybe when I'm feeling better I'll be able to think more clearly about what you wrote and think of other suggestions/advice. Bear with me. And remember than I'm more than 10 years off paxil, still on a benzo, and never in my life did a slow taper as advised here.

I was "TryingToGetWell" (aka TTGW) on paxilprogress. I also was one of the original members here on Surviving Antidepressants

 

I had horrific and protracted withdrawal from paxil, but now am back to enjoying life with enthusiasm to the max, some residual physical symptoms continued but largely improve. The horror, severe derealization, anhedonia, akathisia, and so much more, are long over.

 

My signature is a temporary scribble from year 2013. I'll rewrite it when I can.

 

If you want to read it, click on http://survivingantidepressants.org/index.php?/topic/209-brandy-anyone/?p=110343

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