Anyone extra sensitive to medicines?

[Mary Lyn]

Amy l got my genetic profile done by 23andme for $99 which is much cheaper than the Yasko panel. This was before l knew l was ASD. It is obvious now.

 

[Tarragon]

I am very sensitive to citalopram (anti depressant). It had an effect within 20 minutes of me taking it for the first time - I was as high as a kite!

I had an unusual side effect from antibiotics once too. Not the normal reaction.

Maybe our wiring is different enough to make medicines have different effects

 

[Mary Lyn]

One of the most important defects is the way we do not metabolise folate very well. The genetic defects which are switched on can be modified by taking such supplements in their bioavailable form eg methylfolate. Getting methylation working better can make a huge difference. There is loads about it on the net.

 

[Loomis]

So do the doctors even believe you, or do they just not know what to do about it?

It is useful to think of doctors as body technicians; they are not scientists. It is true they are trained in science but they are skilled practitioners who do not actually do science in their work. They become very good at seeing the clusters of symptoms a patient presents and they know what tests to have done so they can identify and pigeon hole the "disease category" the symptoms point to. They also know the standard procedures and treatments to use once a diagnosis is made. They rarely go beyond this. If you ask a doctor to explain to you how dopamine, GABA and serotonin interact in a neurotypical brain they will have no answer because they have long forgotten these biochemical details that they may have spent six or seven hours looking at when they were in med school. Moreover, even the researchers, i.e., the real scientists, could not answer this question very well because it is not fully understood by anyone.

One should think of doctors as a resource and not as experts in physiology. Every patient should become knowledgeable about their own body and how it works and doesn't work; if they are not able to do this themselves they should enlist the help of a friend or relative who can do it for them. When you know what is going on in your body you get the relevant research and bring the information to the doctor and if necessary confront him/her with it.

 

[Arashi222]

I have a ton of weird allergies...things that make me ill like the sun, food dyes, red meat, medications that have certain preservatives in them. yah...it gets hard to eat some days especially when you just want to be like everyone else.

 

[Vanilla]

So do the doctors even believe you, or do they just not know what to do abt it?

They don't seem to think it's an issue

 

[Vanilla]

It is useful to think of doctors as body technicians; they are not scientists. It is true they are trained in science but they are skilled practitioners who do not actually do science in their work. They become very good at seeing the clusters of symptoms a patient presents and they know what tests to have done so they can identify and pigeon hole the "disease category" the symptoms point to. They also know the standard procedures and treatments to use once a diagnosis is made. They rarely go beyond this. If you ask a doctor to explain to you how dopamine, GABA and serotonin interact in a neurotypical brain they will have no answer because they have long forgotten these biochemical details that they may have spent six or seven hours looking at when they were in med school. Moreover, even the researchers, i.e., the real scientists, could not answer this question very well because it is not fully understood by anyone.

One should think of doctors as a resource and not as experts in physiology. Every patient should become knowledgeable about their own body and how it works and doesn't work; if they are not able to do this themselves they should enlist the help of a friend or relative who can do it for them. When you know what is going on in your body you get the relevant research and bring the information to the doctor and if necessary confront him/her with it.

I definitely believe it's important for patients to take some responsibility in their own body, and do what they feel is best for them, but not all doctors like it when you do this; even if they are unwilling, or unable to help. I've been told before that self-examination is a bad thing. I tend to not return to those doctors.

 

[royinpink]

sometimes the doctors don't even believe me, because it's not supposed to work that way

YES, this is so frustrating! I couldn't get beyond the baby dose of any psychiatric medicine that had an effect at all. The doctor would change my meds yet again with bewilderment, downplay my symptoms, or try to convince me that the lethargy and fogginess I experienced was worsening depression, not a side effect (even though it corresponded exactly to my medication) and recommend I increase the dose, which of course made it worse. Totally useless.

I had a horrible experience with Abilify too! It made me feel so weird and zombie-like

I blacked out on Abilify and came to when my face hit the ground. Bruises on my nose and temple and shock to my shoulder/neck muscles. The doctor guessed it was because I had some wine with dinner, and even though I was sober when I took the meds, it was still in my system. :/ But she still said that was an extreme reaction.

 

[pauie]

I've always had issues with medicines. I've had problems with headache/migraine since I was about 12, and painkillers don't work at all, and never have. I got panacod a few years ago (contains codeine and paracetamol), and it worked .. for about 5-10 minutes, and then the headache was back. I've even overdosed on it.. After that they don't want to give me strong drugs as they think I will overdose again. I'm still not getting any help with my headache, the doctors tell me to take painkillers, even though I tell them they don't work.. So I have to walk around with 7-9 out of 10 in pain every single day.

I have been depressed for the last four years or so, and have been on many anti-depressants, but none are working perfectly. If they work with my depression, i.e. I don't feel as sucidial, I don't want to hurt myself as badly, I don't feel down all the time etc, I get other issues instead, constant headache (9/10 in pain), extreme tummy ache, nausea (to the point where just seeing food makes me want to throw up - and my eating disorder gets worse), dizziness, extreme fatigue (at my worst I've been sleeping about 20 hours a day) etc. If I instead don't get any of these side effects, I still want/try to kill myself. I've been on high and low doses. Nothing seems to work as it should. I always get some sort of crap.

Sleeping pills don't work either. I just get so, so tired from them. I've blacked out from some sleeping pills, like theralen. I'm now on an anti-psychotic that in small doses is meant to help with your sleep, but I don't know .. I don' really trust doctors/psychiatrists anymore. Combining an SSRI and an anti-psychotic doesn't feel too good when I'm not even psychotic. I just get so, so sleepy. My depression has gotten much better these last few weeks though, but the last three days have been absolutely horrid: crying, screaming, anxiety, pain, sucidal thoughts, selfharm thoughts and so on. I don't know what to do. And I live in Sweden, which is on the top 5 list of countries that give out most anti-depressants. Every third person or so is on anti-depressants. It's sad. The doctors will give you anti-depressants for anything.. It's like they WANT to overdiagnose you, to overmedicate you.

 

[garnetflower13]

I am hypersensitive to many drugs. Once I was put on Zoloft for a diagnoses of depression, and nearly passed out while driving. I was fortunately near an ER, and was told by a doctor there that I had had a toxic reaction to the medication. In my book, if a medication causes a lot of trouble right at the outset, it is only going to get worse. Doctors are always telling people to just stick with the new medication for a few weeks and one will "adjust to it" but in my experience, it only worsens. I also get extremely fatigued on antibiotics, and have had scary side effects to other medications. My doctor looked amazed when I reported that I can actually go to sleep by taking one quarter of the lowest dose of a tranquilizer, plus I will be hung over the next day!

 

[wyverary]

There are some medications to which I am extremely sensitive, and, unsurprisingly, the majority of those are psychiatric medications. I absolutely CANNOT do antidepressants: they agitate me and sometimes drive me to the point of blackouts...I remember I was put on this one SNRI (can't remember which) and blacked out and came to in an unfamiliar place having no idea where I was or how I had gotten there or how to get back to my apartment. It was scary. I've discovered I can tolerate Prozac by microdosing with the liquid form (literally 1/20th the normal starting dose). Some anti-psychotics (Ability, risperidone, etc.) have the same effect. And, I don't know how common this is, but simple over-the-counter Melatonin pills are terrible...whenever I take them, I literally FREAK OUT...I mean, thrashing around in my bed uncontrollably, screaming...I've never heard of anything like that happening to anyone else.

I have been diagnosed as having mild temporal-lobe epilepsy, which I'm sure has a lot to do with it, which is probably why I've been doing so well on lamotrigine (an anti-convulsant and mood stabilizer, known by the brand name of Lamictal).

 

[Judge]

I knew there's a reason why I decided to stop taking meds relative to my depression and OCD.

Decades ago.

Geez, even with Loratidine (Claritin) I take it in 2.5 mg doses. About the only thing I take in a normal dosage is Ibuprofen.

 

[cairnsbird]

Yep, can't take any drugs as I have horrible reactions to them. I had an operation recently and the stuff they gave me for the pain dropped my blood pressure below normal. Scary.

 

[Nitro]

After my TBI I was prescribed 14 different types of pills a day and was horribly ill,dizzy and losing hope to the point of not caring to live another day...I studied my meds and quit taking what I understood would not kill me...then there was the toilet day...not caring to live my life out as a vegetable on pills,I took all the meds and flushed them down my toilet even if it meant I would die as a result of not taking them...within a month's time,I got my balance,personality and cognition back and began to feel great again...my further studies have shown me that often the AS mind is treated with NT methods and the tolerance levels in the autistic chemistry are far lower than a neurotypical makeup can stand...I will have to fully agree that you need to be your own judge of what works and what is bad for your own body...I do not profess to be a doctor,nor try to offer advice to others,only a way of opening eyes to the professional world...if your pros do not listen to you,maybe it is time to find new ones that do...at this point of my life,I remain big pharma free and even avoid aspirins...vitamins make me ill as well...some need pills for survival,others take them because the "pros" told them to...at one point,my physiatrist asked me about my pill free world...she got excited when I told her I quit taking my anti-seizure medications...I asked her why...she replied I could have a seizure and die...my reply was that then my struggles would be over...next she tried a handful of psychotropics...I have notes written from that experience on two occasions...the notes frighten me to this day...when she tried pill # 3,I told her they worked well...her answer to that was to up the dosage...I never filled the prescription from the beginning...many times an education ends the moment a diploma hits a hand

 

[Fox]

Hmm. I feel like I have the opposite issue. Where I feel like medicine doesn't have as strong an effect on me. Most people I know who take ibuprofen for headaches/cramps/etc. Usually only take 2 but I take 4. I didn't really feel my antidepressants nor did sleeping pills work on me beyond night 1.

However my medication allergies are pretty obvious and pronounced. I have severe vomitting if I take acetaminophen (tylenol) and I break out in a disgusting dry and scaly rash when I take xanax. I haven't seen any other people's medication allergies flare but mine look and feel pretty severe!

 

[AmyB8484]

YES, this is so frustrating! I couldn't get beyond the baby dose of any psychiatric medicine that had an effect at all. The doctor would change my meds yet again with bewilderment, downplay my symptoms, or try to convince me that the lethargy and fogginess I experienced was worsening depression, not a side effect (even though it corresponded exactly to my medication) and recommend I increase the dose, which of course made it worse. Totally useless.



I blacked out on Abilify and came to when my face hit the ground. Bruises on my nose and temple and shock to my shoulder/neck muscles. The doctor guessed it was because I had some wine with dinner, and even though I was sober when I took the meds, it was still in my system. :/ But she still said that was an extreme reaction.

Wow, that is horrible! And especially that the doctor didn't believe you, like you fell because you were a drunk. It's nice to know at least I'm not the only one, about doctors not believing you.

There are some medications to which I am extremely sensitive, and, unsurprisingly, the majority of those are psychiatric medications. I absolutely CANNOT do antidepressants: they agitate me and sometimes drive me to the point of blackouts...I remember I was put on this one SNRI (can't remember which) and blacked out and came to in an unfamiliar place having no idea where I was or how I had gotten there or how to get back to my apartment. It was scary. I've discovered I can tolerate Prozac by microdosing with the liquid form (literally 1/20th the normal starting dose). Some anti-psychotics (Ability, risperidone, etc.) have the same effect. And, I don't know how common this is, but simple over-the-counter Melatonin pills are terrible...whenever I take them, I literally FREAK OUT...I mean, thrashing around in my bed uncontrollably, screaming...I've never heard of anything like that happening to anyone else.

I have been diagnosed as having mild temporal-lobe epilepsy, which I'm sure has a lot to do with it, which is probably why I've been doing so well on lamotrigine (an anti-convulsant and mood stabilizer, known by the brand name of Lamictal).

I take prozac, but once the doctor tried me on an extended release one that you only take once a week. It gave me a borderline seizure. may have been more like a panic attack, my friend called 911 because i was hyperventilating, slurring speech, couldn't walk straight, was panicking, thought I was having a heart attack. Maybe just an extreme panic attack.

I've taken over the counter Melatonin, and the problem was that, one night it might not do anything, the next night i might be knocked out for 24 hours. Does the melatonin make you hallucinate? Sounds like an extreme panic attack at least.

There are some medications to which I am extremely sensitive, and, unsurprisingly, the majority of those are psychiatric medications. I absolutely CANNOT do antidepressants: they agitate me and sometimes drive me to the point of blackouts...I remember I was put on this one SNRI (can't remember which) and blacked out and came to in an unfamiliar place having no idea where I was or how I had gotten there or how to get back to my apartment. It was scary. I've discovered I can tolerate Prozac by microdosing with the liquid form (literally 1/20th the normal starting dose). Some anti-psychotics (Ability, risperidone, etc.) have the same effect. And, I don't know how common this is, but simple over-the-counter Melatonin pills are terrible...whenever I take them, I literally FREAK OUT...I mean, thrashing around in my bed uncontrollably, screaming...I've never heard of anything like that happening to anyone else.

I have been diagnosed as having mild temporal-lobe epilepsy, which I'm sure has a lot to do with it, which is probably why I've been doing so well on lamotrigine (an anti-convulsant and mood stabilizer, known by the brand name of Lamictal).

Wow, that had to be sooo scary! Never had a reaction to that extreme.

I am hypersensitive to many drugs. Once I was put on Zoloft for a diagnoses of depression, and nearly passed out while driving. I was fortunately near an ER, and was told by a doctor there that I had had a toxic reaction to the medication. In my book, if a medication causes a lot of trouble right at the outset, it is only going to get worse. Doctors are always telling people to just stick with the new medication for a few weeks and one will "adjust to it" but in my experience, it only worsens. I also get extremely fatigued on antibiotics, and have had scary side effects to other medications. My doctor looked amazed when I reported that I can actually go to sleep by taking one quarter of the lowest dose of a tranquilizer, plus I will be hung over the next day!

That is so true, about them telling you to stick with it. The thing I try to get them to understand is, "I can't stick with it! I will be dead!"

Amy l got my genetic profile done by 23andme for $99 which is much cheaper than the Yasko panel. This was before l knew l was ASD. It is obvious now.

Wow, I've never heard of that. So when you get it, what kind of things do you find out? how do you know what the things mean?

I am very sensitive to citalopram (anti depressant). It had an effect within 20 minutes of me taking it for the first time - I was as high as a kite!

I had an unusual side effect from antibiotics once too. Not the normal reaction.

Maybe our wiring is different enough to make medicines have different effects

Me, too, about feeling the effect immediately. That's another thing doctors sometimes don't believe me on, because they always say it should take a week or two to take effect, and it's not supposed to work that fast. But every time I've gone on an antidepressant, or really any psych drug, I feel the effect withing 20 minutes to an hour.

One of the most important defects is the way we do not metabolise folate very well. The genetic defects which are switched on can be modified by taking such supplements in their bioavailable form eg methylfolate. Getting methylation working better can make a huge difference. There is loads about it on the net.

Wow, thanks! that is so helpful! will definitely look into it

I have a ton of weird allergies...things that make me ill like the sun, food dyes, red meat, medications that have certain preservatives in them. yah...it gets hard to eat some days especially when you just want to be like everyone else.

The sun makes me sick too, never would have known it could possibly be related to Asp. Another weird thing is, if I'm driving and the sun is coming through the window, and the heat of the sun is on one part of my body, and the rest of my body is cool because it's not in direct sunlight - anytime one part of my body is a different temperature from another part - for instance, long pants with flip-flops, so your legs are warm and your feet are colder - I get sick to my stomach. Ever experienced anything like that? In the car I'll be trying to put something over my lap to block the sun.

I definitely believe it's important for patients to take some responsibility in their own body, and do what they feel is best for them, but not all doctors like it when you do this; even if they are unwilling, or unable to help. I've been told before that self-examination is a bad thing. I tend to not return to those doctors.

I know what you mean, and sometimes with mine, I get the impression that they won't believe you because they don't want to be wrong, like their ego or something.

It is useful to think of doctors as body technicians; they are not scientists. It is true they are trained in science but they are skilled practitioners who do not actually do science in their work. They become very good at seeing the clusters of symptoms a patient presents and they know what tests to have done so they can identify and pigeon hole the "disease category" the symptoms point to. They also know the standard procedures and treatments to use once a diagnosis is made. They rarely go beyond this. If you ask a doctor to explain to you how dopamine, GABA and serotonin interact in a neurotypical brain they will have no answer because they have long forgotten these biochemical details that they may have spent six or seven hours looking at when they were in med school. Moreover, even the researchers, i.e., the real scientists, could not answer this question very well because it is not fully understood by anyone.

One should think of doctors as a resource and not as experts in physiology. Every patient should become knowledgeable about their own body and how it works and doesn't work; if they are not able to do this themselves they should enlist the help of a friend or relative who can do it for them. When you know what is going on in your body you get the relevant research and bring the information to the doctor and if necessary confront him/her with it.

That makes really good sense, and would explain why they look confused when something is out of the ordinary. So I guess then that they are more on the practical side, the "doing," and not so much the understanding the science behind it. That's good to know, because I would always second-guess myself, thinking surely they must know more than me, so I'm just imagining things. So now that lets me know that it's not that.

I've always had issues with medicines. I've had problems with headache/migraine since I was about 12, and painkillers don't work at all, and never have. I got panacod a few years ago (contains codeine and paracetamol), and it worked .. for about 5-10 minutes, and then the headache was back. I've even overdosed on it.. After that they don't want to give me strong drugs as they think I will overdose again. I'm still not getting any help with my headache, the doctors tell me to take painkillers, even though I tell them they don't work.. So I have to walk around with 7-9 out of 10 in pain every single day.

I have been depressed for the last four years or so, and have been on many anti-depressants, but none are working perfectly. If they work with my depression, i.e. I don't feel as sucidial, I don't want to hurt myself as badly, I don't feel down all the time etc, I get other issues instead, constant headache (9/10 in pain), extreme tummy ache, nausea (to the point where just seeing food makes me want to throw up - and my eating disorder gets worse), dizziness, extreme fatigue (at my worst I've been sleeping about 20 hours a day) etc. If I instead don't get any of these side effects, I still want/try to kill myself. I've been on high and low doses. Nothing seems to work as it should. I always get some sort of crap.

Sleeping pills don't work either. I just get so, so tired from them. I've blacked out from some sleeping pills, like theralen. I'm now on an anti-psychotic that in small doses is meant to help with your sleep, but I don't know .. I don' really trust doctors/psychiatrists anymore. Combining an SSRI and an anti-psychotic doesn't feel too good when I'm not even psychotic. I just get so, so sleepy. My depression has gotten much better these last few weeks though, but the last three days have been absolutely horrid: crying, screaming, anxiety, pain, sucidal thoughts, selfharm thoughts and so on. I don't know what to do. And I live in Sweden, which is on the top 5 list of countries that give out most anti-depressants. Every third person or so is on anti-depressants. It's sad. The doctors will give you anti-depressants for anything.. It's like they WANT to overdiagnose you, to overmedicate you.

Wow, I feel your pain on that too. Despite my oversensitivty to some medications, I do also experience taking anti-depressants and they only work so well, and I'm tired all the time, and they stabilize me so I'm not suicidal, but at first when I start one I'll feel so good, and it doesn't last.

In the U.S., some doctors will illegally accept kickbacks, bribes from drug companies to prescribe their drugs, and so here, some stuff can get over-prescribed because they want to make that money. I don't know if that happens in Sweden though.

 

[I am that which I am]

I have the odd tendency to adapt very quickly to medications, probably due to a very fast metabolism. I have tried a couple dozen medications for different conditions. SSRIs tend to make my insomnia worse. Sleep medications tend to feel like someone just hit me over the head with a hammer to put me out, but I heard that is fairly common everywhere. I do not respond to medications as is intended or normally and sometimes have odd side effects. Like with risperidone I had severe muscle fatigue and mild muscle tension. Abilify actually made me feel tired and drowsy, an effect my doctor had not seen before. When I tried Remeron (Mirtazipine) (for depression) I felt great within a day of starting it, then a month later it no longer did anything, even as I increased the dose. Antidepressants take 6 weeks before they have an appreciable effect (there is a whole scientific theory as to why). Pristic gives me vivid and lengthy nightmares. Medications for migraines give me migraines. And painkillers just tend to push the migraine back 4hrs or so. So I learned that I will have to face the migraine one day or another.

Yes I tend take great care to note all side effects and intended effects of a medication and sometimes change the dose or stop taking a medication without asking them. I also research a medication thoroughly before starting to take it. Some doctors have said "no, no, no never do that" others actually tell me I can increase the dose if I do not see an effect and to decrease after I've reached the maximum dose and get of the medication if it is not working.

I know someone else who has AS and is very sensitive to changes in medication. They tried to reduce a medication for social anxiety and they stayed in a corner of their room for the entire day because the anxiety was so overwhelming.

I read somewhere that metabolic deficiencies and/or differences are quite common in autism. People with ASD have a different variety of gut bacteria and may not have several types, which makes them intolerant to certain kinds of food or sensitive to it (like cows milk). I am lactose (but not dairy) intolerant. But this was a long time ago so it may be outdated or incorrect. If we metabolize food differently than chances are we will do the same for drugs. It would not be a bad idea to spread this throughout the autism community, so at least people with AS are aware of it. The doctors are unlikely to remember that little piece of information from 5 years of schooling.

 

[wyverary]

I guess I can point out that it is often (if not always) the case that the pharmacist has better knowledge of any particular medication than the doctor who is prescribing them. Thank goodness that is not the case with my own psychiatrist, who is very proactive in keeping up with the latest research and always has a thorough and completely honest dialogue with me regarding any medication choices, but the sad truth is, there are plenty of doctors out there who often either are too lazy to look deeply into whatever it is they are prescribing, unwilling to listen to their patients' concerns, and/or (especially in the case of general practitioners) don't know a whole lot about which medication it is that they are signing off on. So, I think if anyone has any concern regarding their tolerance or reactions to various medications, it might be a good idea to speak with the pharmacist directly; I know that, here in the States, that is easy to do.

 

[Nitro]

Many "professionals" are not really on top of their game,be it lazy or "I'm too good to make mistakes,after all I am a doctor"...it is very sad that the guy who places the meds in the bottle is often a better choice of who to seek advice from...I have said this in the past that if nine out of ten times the meds work,how many of the nine give proper feedback or is the panel even listening to feedback...how many of the nine were autistic?...NT medicine is not the same as AS medicine...the total chemistry is different...autistics are often given neurotypical doses which prove to be excessive many times...a professional who does not have time to listen to you is of little use to you in my honest opinion...if the practice is so rushed they have no time to spend on you,then why warm an office seat there?...afterall,it is your health and finances that runs the practice... find someone who is there for your health concerns,not their bank account's...

 

[AmyB8484]

I have the odd tendency to adapt very quickly to medications, probably due to a very fast metabolism. I have tried a couple dozen medications for different conditions. SSRIs tend to make my insomnia worse. Sleep medications tend to feel like someone just hit me over the head with a hammer to put me out, but I heard that is fairly common everywhere. I do not respond to medications as is intended or normally and sometimes have odd side effects. Like with risperidone I had severe muscle fatigue and mild muscle tension. Abilify actually made me feel tired and drowsy, an effect my doctor had not seen before. When I tried Remeron (Mirtazipine) (for depression) I felt great within a day of starting it, then a month later it no longer did anything, even as I increased the dose. Antidepressants take 6 weeks before they have an appreciable effect (there is a whole scientific theory as to why). Pristic gives me vivid and lengthy nightmares. Medications for migraines give me migraines. And painkillers just tend to push the migraine back 4hrs or so. So I learned that I will have to face the migraine one day or another.

Yes I tend take great care to note all side effects and intended effects of a medication and sometimes change the dose or stop taking a medication without asking them. I also research a medication thoroughly before starting to take it. Some doctors have said "no, no, no never do that" others actually tell me I can increase the dose if I do not see an effect and to decrease after I've reached the maximum dose and get of the medication if it is not working.

I know someone else who has AS and is very sensitive to changes in medication. They tried to reduce a medication for social anxiety and they stayed in a corner of their room for the entire day because the anxiety was so overwhelming.

I read somewhere that metabolic deficiencies and/or differences are quite common in autism. People with ASD have a different variety of gut bacteria and may not have several types, which makes them intolerant to certain kinds of food or sensitive to it (like cows milk). I am lactose (but not dairy) intolerant. But this was a long time ago so it may be outdated or incorrect. If we metabolize food differently than chances are we will do the same for drugs. It would not be a bad idea to spread this throughout the autism community, so at least people with AS are aware of it. The doctors are unlikely to remember that little piece of information from 5 years of schooling.

Wow, that's really good info! I didn't know there was a difference between being lactose and dairy intolerant. I had basically the same experience with Remeron. And good point about how doctors are not going to remember that same piece of info. If I ever decrease an anxiety med even slightly, I have a reaction almost as bad as your friend did.