Stevens-Johnson Syndrome

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    The Zebra that Spoons

    Hey there!

    Sometimes in life, you are thrown curveballs. Sometimes they hit you in the face and other times you dodge them! I’m here to tell you that you are not alone and that we can fight through this.

    When I was young, I was predominantly healthy. From the age of five I was misdiagnosed with multiple Psychological disorders; from being on many different medicines, to being in the hospital suffering from StevensJohnsonSyndrome! Yep, you read that right! StevensJohnsonSyndrome! At the age of 14, I was on a medication called Tegretol. I ended up in the hospital for three months with SJS. The doctors were unaware of this condition, how to treat it and what the longtime risks would be. I not only had external effects, but I also had major internal effects. When I finally recovered, I started to notice a lot of change in how my body felt on a daily basis. Not too long after recovering, I was diagnosed with Dysautonomia… and of course being a young female, I was totally confused. My biggest struggle was POTS… I dealt with it and tried my hardest to manage, but as we all know passing out on a regular basis isn’t healthy. So I finally met with an electrophysiologist and had my first catheter ablation in 2015. Following this, I was diagnosed with Atrioventricular tachycardia syndrome and inappropriate sinus tachycardia. I’ve had multiple failed ablations and in January 2020, I had an sinus node modification. Finally we have won the battle and my resting heart rate is now lower. Backtracking a little… not only did I face heart conditions following SJS, but I also face Gastroparesis and pyloric stenosis… surgery was a big help! After seeing multiple specialist and going through a long journey of genetics… I have been diagnosed with Vascular EDS, mixed connective tissue disorder, MCAS, and much much more! Needless to say, these are my long term risks from SJS. On a daily basis, I infuse 2L of saline through my PORTACATH that I had placed in 2019. Not only does it help with my POTS but it helps with many of my conditions! Of course, as it may seem, dealing with such a wide range of ChronicIllness and RareDisease, it is almost impossible for me to work and stay active. I worked until the age of 22 and finally told myself that I just couldn’t do it anymore. I applied for disability and received benefits in 5 months! (Yes that’s super unheard of.) Being disabled are the age of 24 has brought a lot of confusion from family, friends and strangers. I get told often that I’m just “lazy”. I understand how that can be confusing, but until someone walks a mile in your shoes, they will remain unaware. I’m here to tell everyone, who is disabled or has a loved one that is disabled… this is a journey of ups and down. Never forget to smile and wake up daily knowing that you can fight through this! #POTS #RareDisease #ChronicIllness #StevensJohnsonSyndrome

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    Defeated and itchy

    Feeling a little defeated today. It marked the 3rd week of Lamotrigine and I woke up with the dreaded rash. My doctor says to discontinue use immediately and monitor it to be sure it's not Stevens-Johnson syndrome, which in itself is scary AF. But assuming the rash goes away without further complications, I'm still left with "What do I do now?" This was only the 1st med I've tried to manage my mood episodes and I know there are plenty more to try out there, but I was really hoping this one would work. Aside from the life-threatening rash thing, it seemed to carry the lowest risk of undesirable side effects. I see the dr next week but until then I just feel like a failure. How many meds did you guys have to try to get the right combo? #Bipolar2 #Bipolar #BipolarDepression #Lamotrigine #StevensJohnsonSyndrome #PsychiatricMedication

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    Anniversary of Illness #StevensJohnsonSyndrome #Anniversary

    Today marks 3 years since I got sick. And that is so heartbreaking to me. 3 years ago I was a 16 year old girl prescribed an anticonvulsant with a black box warning that brought on Steven Johnson Syndrome. And from that day forward nothing would ever be the same.
    Nobody told me the lifelong conditions that would’ve remained dormant had I not taken those pills.
    Up until that point I was healthy. Rarely got sick, no allergies, no real health complications in my whole life. I don’t even remember what it was like to feel healthy. To not hurt or feel nauseous or be throwing up or passing out or weak or exhausted and drained or or or.
    Everyday I think about how I would probably still be healthy if I hadn’t taken those pills. I wish for a do-over. I want my life back. Because this isn’t living.
    3 years ago a big part of me died. And now I’m trapped in this body that doesn’t care for me. It feels like much longer than 3 years of illness and lack of answers and struggling and being told I’m faking and feeling crazy and sad and heartbroken.
    But there is no redo button. I’m stuck with this. This is my new normal. And I wish it wasn’t, because I am so tired of fighting. So tired of losing the battle.
    When I got the notification from 3 years ago I cried. I mourned the loss of my health and the things that fell away with it like friends, relationships, happiness, and so much more.
    I wanted to be a ballerina or a heart surgeon or an author or an artist. Now I just want to be healthy. My future is no longer as promising as it once was. And somehow I have to figure out how to live through this.
    This has been the worst 3 years of my life. But I have also learned so much. About myself, my own strength, and about those around me. And while I would trade these ailments in a second, I wouldn’t trade what they’ve taught me.
    My body hurts, but my heart is full.

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    Feeling down & need to vent...

    My legs have been swelling a lot more than normal and leaking some clearish fluid at times so I saw my gp and just got my lab results. Looks like everything is ok except he wants me to work with a nurse for lymphedema. I don’t need any new diagnoses!! When I saw my gp that day he had a new nurse and when she saw my long list of allergies she asked if they were true allergies or just sensitivities “because with a list this long it rules out pretty much everything the doctors can give you”. While it may be a valid question there was something in her tone that set me off (and my hubby as well) and I began telling her how many meds caused Stevens-Johnson Syndrome and which caused violent vomiting, paranoia, hallucinations, seizures and so on and she says “oh, you’re one of those” in a snarky tone. One of what??! I’m also worried because with my CRPS I can’t stand to be touched on my legs, the left is the worst, and definitely can’t be in compression wrapping so I don’t know what the options are going to be. If they have to touch or rub me in any way I’m going to be screaming in pain at the top of my lungs! Can’t take diuretics. The day I saw him, doc said I had a good 20+ lbs of water weight on my legs and they weren’t that bad. My cyclic vomiting syndrome has been acting up lately. Not started vomiting yet 🤞but beyond nauseated and downing the phenergan. Think it has to do with stress though. All I can say is a lot of huge changes might happen in my life soon. And I’m having a hard time working around my current point in life with no help without knowing for certain if those changes will happen. I saw my mom tonight. Told her about my CVS and she just said “ Don’t start that again” I know what she meant but I don’t have any control over this! September brings my hubby’s bday, my bday, and our 22nd anniversary. I hate the whole month. I can’t stand my birthday. We never get to go on a trip or out for a nice night. Something (me) inevitably screws it up. I’d rather just skip to October and November, definitely can miss Christmas ugh too much stress, and cruise straight into next January from there. Feel a bit better, thanks for listening... #Lymphedema #ComplexRegionalPainSyndrome #CyclicVomitingSyndrome #Anxiety #Stress

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    What It Means to Be a Compliant Patient – And Why I Am One

    My mother was not a compliant patient. She would have side effects from medication and just stop taking them: The meds gave her sores in her mouth or nauseated her.  And that’s valid. We’ve all had medications that we couldn’t tolerate because of the side effects. But Mom stopped taking them without telling her doctor. Once she went to the emergency room, where they had a list of the meds she was supposedly still on and I had to tell intake, “No, she stopped taking that one. And that one too, I think.” (She was not mentally ill, but that’s where I’m going with this.)

    There is only one psychotropic medication I know of (though there may be others by now that I haven’t heard about), where the potential side effects are so horrible – potentially lethal – that patients are advised to stop taking them immediately and get medical help right away.  The side effect is called #StevensJohnsonSyndrome and it is a potentially fatal rash.  I wrote about it a few years ago. (wp.me/p4e9Hv-1g) (wp.me/p4e9Hv-1g)Other than that one instance, psychotropic medications should never be discontinued unless you have consulted your physician. You never know what withdrawal symptoms lie in wait for you, but they’re bound to be unpleasant, even if they don’t cause you to relapse, which could easily happen. Withdrawal from any drug is not fun; it’s to be avoided.

    Nonetheless, I read posts in support groups all the time which say that people have decided by themselves to stop taking a medication, or even all their medications on their own. I have friends who have taken their treatment into their own hands this way.

    There are several reasons they sometimes give for giving up medications. One is that the meds aren’t working. What they really mean is that the meds aren’t working yet. Many psychotropics don’t show positive effects until they have built up in your bloodstream, which can easily take four to six weeks. Expecting results in a day or two is unreasonable.

    Others stop taking their meds because they “feel better” and think they no longer need the pills. This is just ridiculous. The meds are the reason that you feel better. Your psychiatric condition does not just go away, like the flu, when you feel better. Your disorder may soon come roaring back (or creeping back). And the thing is, when you restart a medication, it sometimes no longer works as effectively. Then you have to start all over with a new prescription and have another four to six weeks of symptoms while you wait to find out if it works or doesn’t.

    Still other people simply don’t like taking medications.  This I don’t understand.  People take meds for flu and infections and such conditions and never seem to resent them. Maybe it’s the idea that you could well be – will likely be – on psychotropics for the rest of your life. But lots of people have meds they need for life – insulin, cholesterol meds, anti-inflammatories, #Asthma meds, thyroid meds, and others. People don’t quit taking those just because they don’t like to take pills or injections.

    I think the real reason people don’t like to take their psychiatric meds is that they’re psychiatric meds. There is still massive stigma around the subject of mental illness. Taking medication for a mental illness means admitting you have one, which some people are reluctant to do.

    Or they may be giving in to “pill-shaming.” There are plenty of people, perhaps in your own family – and certainly across the Internet – who will tell you that all you need is self-love or affirmations or sunshine or exercise or vitamins or meditation or willpower to banish your mental illness. Funny how they never tell people that sunshine will cure their broken leg or that exercise will cure their #BreastCancer.

    I hesitate to say that I love my psychotropics, but in a way I do. They have brought me out of states of mind that were harmful to me. They have made it possible for me to function and create and communicate. They probably have saved my life.

    Occasionally I let my psychiatrist know that I may need a change in dosage or that one of meds is no longer working. I’ve even reviewed with him whether there are any meds I could quit taking (there aren’t at the moment). But I keep taking them faithfully, every day, morning and night.

    I need the psychotropics. So I am a compliant patient.

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    Rest


    Today I will give myself the gift of rest. I will allow my mind to rest and take a break from the pain. #52SmallThings #PTSD #StevensJohnsonSyndrome #Neuropathy
    #BipolarDisorder

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    First Post :Parent of Addict

    I have an adult daughter who seems to enjoy ripping me to shreds every chance she gets.. oh did I mention she’s also an addict? Her drug of choice is Heroine or as the Millennial call it “H”. I have lost a child, he was her older brother. For the last 6 years or so I have watched my kid attempt to kill herself for all the world to view. She delights in telling me exactly how she will do it to telling me I’m a terrible person who doesn’t deserve to be called mom.. if you knew our life you would see the truth. Suffice to say my daughter seems to go back and forth between blaming me for everything and threatening to kill herself. She has #PTSD #DissociativeIdentityDisorder #Parentsofaddicts #unconditionallove #Notadoormat #StevensJohnsonSyndrome #SJSTENS I can’t continue to take her nastiness and I don’t want to feel guilty for trying to protect myself either. I could write a book, but my daughter is the child of #Divorce . I know she has to be ready for help.How do I stop the guilt? Sincerely,
    Truly Lost

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    Anyone else? #StevensJohnsonSyndrome #RareDisease

    I have never met someone else that has had Steven’s-Johnson syndrome. It would be nice to talk to / know of at least one other person that might somewhat understand. Thank you.

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