I had a reaction to a psych med again...

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I was on Trazodone 25mg once/day. Within 2 weeks, I had the reaction: Extremely suicidal, extreme agitation, aggression, panic attacks, tachycardia, and insomnia. UGH. I keep shaking. I stopped the medicine.

I kept crying. You see, I had severe reactions to 3 medicines before. Abilify gave me tardive dyskinesia, Geodon gave me (undiagnosed) neuroleptic malignant syndrome (I had ALL of the symptoms...horrible), and Lamitcal gave me Stevens Johnson Syndrome. The problem is that no one usually believes me when I have a reaction to medicine.

If you know anything about the extreme reactions I've had, you'd know they can cause death. The NMS wasn't caught and was misdiagnosed as pseudo seizures and schizophrenia symptoms. They gave me a shot of Haldol, which causes NMS. When you get this reaction, you are supposed to go off the medicine ASAP. Due to medical incompetence (I kept telling them all that I was having a reaction, but then I had movement disorders and couldn't move or talk) my symptoms lasted for 3 months and I still have dyskinesia attacks. It's permanent.

The Stevens Johnson rash was misdiagnosed as strep throat even though I had ALL of the symptoms and I told them I was to come to the ER. The rash was on my chest and up my leg, and my skin was already sloughing off down my tongue and on the inside of my mouth. My lymph nodes were swollen to the size of GOLF BALLS, I had sores around my mouth, a cough, shortness of breath, weakness, and I couldn't swallow water or food without choking. The ER doc laughed and said I didn't have it, even though they didn't look at the rash. At the time, it was purple spots, so I didn't know it was a "rash". The drug information said to go to the ER if you have purple spots, cough, tongue swelling, swollen lymph nodes, weakness, "flu like symptoms", and sores in or around your mouth, eyes, or nose. The group home was going to kick me out if I went off of my meds, and my psychiatrist didn't want to see me right away. I stopped my meds, and the symptoms were gone within 24 hours.

Both times I'm pretty damn sure if I had listened to the doctors and family about continuing my meds, I would be dead. They kept treating me like an incompetent child who is hallucinating her physical symptoms.

So, this time, I went off of the Trazodone by myself. I also had dyskinesia again (although this was most likely due to all of the stress). It can be brought on by both physical or emotional stress, or for no reason at all. So, I was having seizure-like movements and couldn't move and was mute while I had all of this mood switching due to the Trazodone.

At this point, I was sure I was going to kill myself. I kept going past the knives and was just going to slash my wrists open. I told my husband, and he called me a hypochondriac because I was crying and remembering my past reactions. He thought I meant I had the rash again, but even if I did, I can't believe he said it was in my head. I've had severe suicidal reactions to almost every anti-depressant I've been on, including ones in different categories.

My mother yelled at me and said to just stop the medicine. My grandma scolded me for stopping my medicine, saying I need a doctor's approval. So I guess everyone wanted me to stay on it until I killed myself.

I kept switching between panic, extreme anger (screaming uncontrollably and almost blacking out), to extreme suicidal impulses. It kept switching so fast. And I would start crying hard and roll on the floor and then I would stare at the wall and dissociate. I already feel better now that I've been off the medicine for 48 hours, but I'm still really suicidal.




I feel like...I can't do this. I refuse to take psych meds when no one believes the reactions I have when it's RIGHT IN FRONT OF THEM. Why would I fake reactions? I WANTED this to work. Actually, it was helping my insomnia at first. My husband kept getting mad at me, ignoring me, slamming things, so on even though I was in panic/suicide mode.

I'm so sick of no support. I'm grateful for the support I get here and from friends, but GOD DAMNIT. I know my family is abusive. I shouldn't be talking to them. The only reason I am is because I don't have a solid support system. And it all backfires on me.

This medicine was given to me by a primary care doctor, too. I feel like people minimize my reactions to medicines. Even my grandma said that if "a doctor says you need something, you need to take it". UHM, no. My depression is due to other factors like Bipolar and my past. I can't get better because of sh***y people around me. And people want me to still be back on all of those meds even though I'M NOT PSYCHOTIC OR IN NEED OF THEM. Also, I can't even get my ADHD medicated because people don't want to give evidenced-based medicine (stimulants) to me. Medi-Cal (medicaid in CA) doesn't even cover stimulants if you're over the age of 16. Doctors have to request it, and it can take months. So they will be trying all sorts of medicines on me. Well, I don't want them.

I'm not lying when I say I've been on dozens of medicines. I think people want to medicate my autism away. I really, really do. I'm weird, so give me an anti-psychotic and a sedative so I can drool all day and people will like me! NO!

I'm so done with medications except for ADHD. I need support, not more pills. I've been through the pill s**t for NINE YEARS. THE ONLY TWO PILLS THAT WORKED WERE ADDERALL AND LAMITCAL, AND I CAN'T TAKE LAMITCAL BECAUSE OF THE REACTION.

I just feel like.... I'm going to give up. I don't know if it's because I'm suicidal or because no one will listen or what. I can't take this. I want so badly to find a doctor who understands autism and my medication sensitivities. I'm so sick of having my brain being experimented on. I asked for a sleeping pill, and they gave me Trazodone. Why can't I just have a non-addicting sleeping pill? I specified non-addicting, too.

I swear people won't stop until I'm dead or in a wheelchair because I have permanent dyskinesia every day of my life. Sometimes I think maybe I should just drug myself up, because I'm pretty sure people want me dead anyways. All people in my personal life (aside from friends) do is scream at me. Scream all of the time. I'm not living up to their expectations. I'm making up my problems, even though they are diagnosed. Why people still think I'm making s**t up or being a hypochondriac when I have documented problems is beyond me. I wish I could take my diagnosis back and just be back on Vicodin all of the time and sleep away my life.

Note: Hypochondriacs have a legitimate anxiety disorder, I'm not making fun of them.

Thanks for listening. I just...wanted to rant here...

sorry you are having so much trouble.

Thank you for listening...

what if you titrated quickly down to no medicine, noted any recurring symptoms, then gradually added back meds that most directly address whatever symptoms recur? dumb question but I had to ask it.

Well with the Trazodone, I was on the lowest possible dose. If you get a reaction, it's almost always when you start it (within a few weeks) or when you increase the dose. It sucks, because Trazodone is pretty safe.

With the Lamictal, if you have SJS, you can't go back on that medicine or any medicines like it ever again. Pretty much it increases the likely hood you will die when you get the rash again, because it will come back. And this also sucks, because it was the only thing that worked for my moods. With it, there was a perfect dosage where I felt great. If it went too high, I was a robot, though. But still, not being able to go on that medicine..ugh...

Right now I'm on no medicine. The only medicine I was on was Trazodone. I was just recounting my story of past experiences with meds here. It's the first time I decided to trust medicines again after years...and I had a reaction.

The interesting thing is I was often on 3 or 4 medicines at a time. It IS possible that the feelings of suicide were the result of drug interactions. I know I was on a lot of anti-psychotics at a lot of different doses.

I guess mostly I'm just horrible depressed right now. Like...the only way to try to see which medicine works is to TRY them. This scares me so bad. If everyone thinks I'm just making things up if I do have a reaction, then I refuse to go on them. I'm trying to find a compassionate psychiatrist who understands my reactions and will advise me on what to do if something happens or hospitalize me. I need someone I can trust around me in case a medicine makes me insane.

I'm also wondering if maybe I should address my anxiety and ADHD FIRST before my depression. Anti-anxiety meds seemed to have no effects, but they also didn't have major side effects. So it's possible that maybe I wasn't on the right dosage/combo.

The problem is that psychiatrists just seem to throw out random dosages of stuff. I'm terrified of that happening again. Like they give no thought to the medicines I've been on, reactions I've had, and my diagnosis. They mostly seem to want to give me an SSRI and anti-psychotic when I'm not psychotic and they don't really help with my Bipolar.

I wanted to go to the hospital because Trazodone (unfortunately) made me feel so bad. I wanted to go to the psych ward or something. But then I figured since NO ONE BELIEVED ME, I doubt doctors in an ER will. The last thing I want is them to 302 me because I'm eccentric and they think I'm hallucinating. I talk a little "funny" sometimes, so people confuse this for psychotic features.

Right now I'm only on birth control and generic singulair. I've even considered it being the birth control, but then going off of the Trazodone made me feel so much better already, and it's only been 2 days.




The clinic I go to wanted me to see a psychiatrist, but they can't get me in for like 4 weeks. I think it's just a bad idea given my sensitivities to take psych meds from a PCP... they don't understand all of my problems.

My recurring symptoms are:

Mood changes from distinct periods of depression to distinct periods of mania that last 5-7 days where I can barely sleep for days at a time
Trouble focusing, having to reread something 6 times, can't finish tasks, forget everything, can't get going with tasks, extremely distracted, racing thoughts no matter if I'm manic or depressed, insomnia
Sometimes I still have OCD compulsions, but they are loads better
Skin picking and hair pulling disorder, varying time engaging in the behaviors (could be 5 minutes or 8 hours)
Extreme overall "double dip" depression caused by environmental factors
High anxiety over all with PTSD symptoms

At this point, my mood disorder is not effecting my life nearly as much as my ADHD and other issues. I'm not nearly as impulsive as others. I've calmed down a lot. It seems like people want to treat my depression badly but I've been known to have "treatment resistant depression". I often question the therapists and their logic, which doesn't help. I find talking, venting, and feeling validated helps WAY more than any medicine. I become way more stable (except the anxiety and focusing problems) when I can just talk. It makes me think that maybe I should skip treating my depression for now, anyways, but doctors always focus on that because I have suicidal thoughts all of the time (which I consider minor and passing).

Sorry if I wasn't coherent. All of this anxiety and heart pounding is REALLY making it hard to think about what I'm writing...

your post was coherent enough for the anxiety, consider GABA. others on WP have said good things about it. for the focusing [frontal lobe] problems [ADHD], I have found that vigorous daily exercise seems to clear away the cobwebs as well as or better than meds, as well as leveling my moods. also useful for mood is 2 grams of EPA/DHA in the form of fish oil capsules that have at least a gram of total omega-3 in each capsule, which will minimize the amount of fish oil you must swallow. you might also google dr. Daniel Amen who says lots of interesting things about how one can treat one's own issues with nutritional supplementation.

I can relate to your story so much. Particularly the parts about wanting to medicate the autism away and doing better with talking about things and getting validation. I don't know about you, but I feel like half of my issues are due to chronic invalidation and gas-lighting.

I stopped all psych meds when I was around 19. I still have crazy reactions to medications for physical problems that doctors don't believe, and worse, symptoms that they don't believe. If there was one thing about ASD that I would have people aware of, it would be the tendency towards those things. I'm sick of being a medical mystery/guinea pig.

Thanks for the advice. I think I will consider GABA. A psychiatrist once told me to try and take fish oil, too. There were apparently a few studies that using it with certain mood stabilizers can help with Bipolar. I will try to get a "head start" on that. I might even try Benadryl for insomnia. I mean, I used to take it for that. A former psych also told me to try it. Maybe even Zzzquil.

Metadanielle, you completely understand what I'm talking about. I feel half of my issues are due to gas lighting and invalidation, too! I'm tired of being thought of as stupid. I know that some people spout non-scientific reactions (like saying gluten is somehow causing autism or something). But the problem is....all of my reactions are EVIDENCED-BASED! That's what KILLS me! These are well established reactions. They are RIGHT in the pamphlet of information you get from the pharmacist!

I feel like people want to be "experts" in things they have no right to be. I feel even worse when everyday people who know NOTHING about these medicines will tell me it's all in my head. Again, these are well established side effects from the pharmaceutical companies themselves! UGH!! !!

I, too, have crazy reactions, as you can see. I feel like instead of doctors invalidating you, they should double check side effects, or even report them to the FDA. I mean, CHRIST! Doctors do NOT know everything! They can't remember all of the side effects, and that's OK! All I ask is that they don't assume I'm lying. And for the people around me that know I'm not a liar, they should know better! It's already established I'm NOT lying or exaggerating. So, why do people still invalidate?!?!?!

I do feel like I'm a giant experiment. I think part of that is because even though I'm an adult, people still think they know what's best for me. I'm VERY informed on certain medical information. I KNOW I'm not a doctor, but that doesn't mean I can't remind a doctor about something they may have forgotten. This idea that they are the gods of knowledge and they are ALWAYS right is simply ego stroking and an appeal to authority. I don't do those. However, if someone gives me more information than what I have, I pretty much ALWAYS listen and I usually listen to doctors. It's the psychiatrists that drive me insane. I've even caught medication mistakes from doctors before (it happens, we are human). All I do is simply inform them or the pharmacist. Like, for example, one time I was given Serevent without a prescription for a corticosteriod (I have asthma). Serevent is to only be used with a corticosteriod and not by itself. If it's used by itself, not only does it not work, but it increases the risk of dying from an asthma attack drastically. See, it's a simple mistake. I was informed about asthma medications, and I corrected it. Simple.

But when you do that with (certain) psychiatrists, ohhhh boy. Well, I'm sick of it. I'm currently not even under the care of a psych. I was given Trazodone by a PCP who was only trying to help and listened to me. But given my reactions, I think I really need a psych only for those meds. I'm just so afraid no one will listen all over again. I don't think I've had one psychiatrist really know wtf was wrong. And they kept trying to treat my depression with anti-psychotics. -_-

I know I'm Bipolar and I would like that under control, but I won't sacrifice my health to do that. My uncontrolled Bipolar is way less of a risk (my severity isn't that bad) than the side effects I seem to get for meds.

I think right now I will try to focus on getting my sleeping schedule completely routine, guys. Thank you so much for listening. I hope I can find a psychiatrist who actually listens. I don't know why I'm so sensitive to certain medications, but I am...and I won't stop until I find someone who takes that seriously...

I understand because I've been through it. I think perhaps it's unbelievable because it is so rare. Usually, when you encounter someone with these issues, they *are* hypochondriacs. Why they continue to disbelieve after seeing evidence, I don't get. I know people don't like problems that are difficult and complicated. Shoot, it's possible you're getting shut out because of the sheer *number* of issues you've had, not because it seems crazy, but because it's a lot to listen to. I've had doctors do that to me before.

I could see that. I kind of dislike how doctors dismiss hypochondriacs, too, because they have legitimate anxiety disorders, but I understand how it can be complicated to treat.

That's the messed up part, though. I've had these reactions and they were obvious. I mean, for a person to fake that....it would be HARD. My husband has been with me when I've had my dyskinesia episodes at times. He said that he was trying to hold down a part of my arm because it was hurting me (it was all curled up). He said I was FREAKISHLY strong. Like he couldn't budge me at all. And normally, he can overpower any part of my body (like if we are wrestling). So he knew I absolutely wasn't faking.

Yes, I can also see how people don't like to treat the difficult patients. I have a lot of issues, reactions, and I seem to be treatment resistant. So, I need someone who has more experience with these certain problems. It's been very hard to find someone...

I've also wondered if I was shut out due to the number of problems I have faced. Not only have I had rare reactions, but I've had them on a few different medications and they were all different types of rare reactions! To them, this may sound intimidating. To me, I'm just like "Wtf, did I hit the genetic lottery or WHAT *sarcasm*"

Anyone who knows me personally knows I hate my reactions, too. I mean, I know that some people who fake illnesses or who talk themselves into believing they are very sick might fake rare reactions, but I HATE it. I'm SO AFRAID I will end up in a wheelchair if I have one more dyskinesia reaction. I mean they are already permanent so far, but luckily don't happen every day. I just don't want to die. I mean sure, the minor side effects? Headaches, dry mouth, minor mental status changes, drowsiness, trouble peeing, other annoyances? The only way I would say no to those is if they were so severe they were more bad than helpful. But hell, I'd be willing to deal with them if the benefit of the med was good! I know nothing is perfect.

I found this to be true: Before I was diagnosed with autism, people took my way of communication as arrogant. If I dared question a doctor, I was told I was psychotic. Never mind that what I was saying was just asking questions about the medications or their reasoning for putting me on it (which ETHICAL doctors should have no problem speaking to me about). My use of certain medical terminology also was probably a 'red flag" that I could possibly be exaggerating. But, that was a special interest of mine, and I don't claim to be a doctor. I just prefer to be active in my health and have a discussion with my doctor. I find that the doctors I've been to don't like the fact that I'm informed about my medications and diagnoses (and all of my information has been from reputable scientific sources).

The good news is ever since I've been diagnosed, I told my new doctor up front I'm autistic. They treated me SO different. Instead of acting weird around me, they spoke to me like an adult and listened. I'm thinking this may be a key to getting better services. Otherwise, I seem to be labeled in ways that aren't accurate (like a hypochondriac).

Do you have access to better doctors now? Or at least ones that listen to you? I hope you do.

Holy crap we are so much alike. Doctors HATE informed patients, while simultaneously telling people to be informed about their health. It pisses me off. Unfortunately, no, I don't have better doctors. I live in a rural town w/ rural doctors and all of them are w/ the same company so the records (and whatever "black spot" is in there) will follow me. Disclosing my Autism has had no help. People tend to treat me worse.

It may interest you to know that my mother had similar weird medical issues and stuff. She won't entertain the idea of mental health issues (She definitely has them) so I don't know how she would react to those drugs. I don't think she's on the spectrum.

I find the doctors who hate informed patients are often the ones who are unethical or have egos off of the chart. It's one thing for a doctor to correct someone on unscientific information, but to just assume they are right without even double checking side effects is NUTS. It takes a compassionate doctor who realizes the limits of his/her own knowledge to listen to a patient like that. When someone is practicing for years, it can reinforce their own arrogance and it's a bad thing for both the patient and the doctor. It's a SHAME.

I HATE this, though. You're completely right. You are supposed to be informed, yet you are belittled for doing just that. I'm not a child who has no information. I have access to scientific knowledge and I use it when in relation to my health. We should be congratulated. As I said, I've even fixed prescribing errors before (by calling in the doctors office). I wasn't even mad. Everyone is human. I've had people tell me I'm supposed to just listen to the doctor and never question anything. Well, what a great way to be a doormat and possibly get injured when you could have just been informed!

I'm so sorry. In a way, I wish we weren't alike in this instance because this is a BAD thing! At least I have access to better doctors. Do you have chronic conditions that need managing that aren't being managed? Have you reported these doctors? Sometimes, you need to step up. As much as I hate to say this, are there any nurse practitioners that you can see for routine medication management? I know they aren't doctors, but since you seem well informed, you might be more likely to catch any errors they make. They tend to listen more because of their nursing background.

The weird thing is my maternal side has medication reactions, too. Like rare ones. My grandmother doesn't seem on the spectrum (she is very narcissistic and abusive) but she has had quite a few rare reactions that made doctors go "Whaaat?" She had to change doctors to be listened to.

My mother has had severe reactions to birth control and I think one other medication. She also doesn't seem on the spectrum.

It does seem likely that genetics could play a role in this for people who are sensitive to many medications. If anything, the fact that your mother had similar medical problems should strengthen your case.

I don't think the whole problem is that I'm informed, it's that the issues I have sound like mental ones (hypochondria) than physical, and my knowledge reinforces it. Tho if I really were a hypochondriac looking for attention, wouldn't I make up something believable?? My issues are unheard of, so I can kinda see how they would be hard to believe at first, but after a while.......c'mon.

I do have a chronic condition, but it's too severe for substandard care, I've tried that. I'm actually going to one of the best practices in the state now. It the symptoms without explanation and the dismissal of side effects that bother me.

My mother is allergic to birth control. The actual hormones. Gynos say that's impossible because hormones are present in her body but she reacts to those too. Weird female health issues run in my family, but no one has gotten an answer yet. Weird medication reactions are common as well.

Every doctor I've ever had has gone "WHAAAT?" I've also gotten "Oh my God" a couple times. I laugh now, cuz it's just a matter of time, but it's actually very frustrating.

That's the funny thing. Hypochondriacs usually are intensely worried about something related to their life or more believable. Like, if they bumped their head, they are worried about a brain injury. If their dog has a tick, they are worried about Lyme disease. Their anxiety causes them to jump to the worst possible scenario. And doctors shouldn't even be rolling their eyes at those people. They need mental health care! There is a VERY big difference between fictitious disorder and hypochondria, but man, do doctors have an attitude about both. Actually, both need to be treated, but it's harder to treat fictitious disorder. A hypochondria would probably take comfort knowing their fears are REAL but they need help controlling their fears. I mean they often HATE worrying non stop about their body pretty much breaking down.

Oh the other hand, if a person is coming to the doctors with the SAME EXACT problem over and over again, that doesn't really fit the profile of fictitious disorder OR hypochondria! Hypochondriacs will be worried about multiple things or still be worried about it when it's RULED out, and people with fictitious disorder will keep coming back with different complaints that are severe enough to get medical attention each time. I hate when doctors pretend they know everything about psychiatric disorders. -.-

There are many documented cases of women having reactions to birth control. Too much of a hormone can cause all sorts of problems, ESPECIALLY psychological ones! It can cause extremely bad psych problems..oh man...my mom had those. She would also feel like she's having menopause but she was a teenager and then in her 20s she went back on it and it was the same thing! And those doctors are downright silly. Too much of ANYTHING is problematic. For example, many people think you can't overdose on vitamins. COMPLETELY wrong. It's wrong to just dismiss that. Also, my mother tended to have more problems with estrogen than progestin. So, for some women, it even depends on the hormone used.

Have they considered your mother has a hormone imbalance? My grandma had PCOS, but it wasn't diagnosed until way later in life. It was awful for her.

Does the place you are going to now offer any sort of diagnosis? Also, I hate it when doctors assume if they don't find anything, it must be in your head. They should have referred you to specialists. I can't count HOW MANY stories I've seen (especially on TV) about people being misdiagnosed because the doctor assumed their very real symptoms were all in their head. I may understand if it's been years and no one finds anything, but symptoms are just that-symptoms. Sometimes they may seem like they are simple or related to a specific body part but are actually neurological or something else. And sometimes, you are sent to the wrong specialist. The thing that irks me the most is when people get dismissed RIGHT away. I mean, sheesh. At least try to do your damn job and do testing before you just dismiss someone! Just because something is rare does NOT mean you won't encounter a patient with it!

As far as I know, my mother has never had her hormones tested. She does have recurrent ovarian cysts, which tend to burst, causing crippling pain, and an exploratory surgery revealed uterine polyps. My mother suspects endometriosis, but she isn't the type to flat out say "I suspect I have X" The doctors just want to blame perimenopause and put her on birth control to lessen her bleeding (which is severe) and everything stops after she says she's allergic.

The issues in my family seems to be ovulation troubles, weird symptoms during that week. I have severe prickly itching on my legs and sometimes arms after showering during that week. I found no correlation w/ any bath product and it took my mother to notice it had a monthly pattern. I also had an ovarian cyst at least once, they have no symptoms unless they burst or like mine, press on an organ.

The place I am going to now is for my bowel condition, which I have a diagnosis for, and have for 16 years. It's just that my case is abnormal, as are my biopsies, and my medication reactions.

I don't know what to do about the gynecological issues, mine or my mother's. My mom's been through all but one of the gynos in town, and the last one seems to be the same, based on other people's experiences.