Steroids, feeling odd

Glad to hear you're feeling more normal and will be tapering the pred! Like you said, sounds like you've been down the rabbit hole! Well, if it takes ITP to have a transforming growth period, thats what it takes.

Sounds like you are getting ready to leave the nest. There are all kinds of practical considerations but really its an emotionally motivated experience- everything seems wrong about the nest and so confining. Its sort of like you are kicking yourself out. It takes time, be patient, it will happen. I recall I couldn't stand my parents or their house when I was ready to leave, and still felt sad about leaving.

all said, keep writing- you are expressive, creative intelligent talented. Even when its not all logical- its paints a picture. Thats what you want as a writer. again glad to hear you are tapering- whew! good luck

predniman wrote: Also I decided that there is no possible way I'm sleeping in my room tonight. I can't handle all this at once. It feels like I'm entering a round-shaped room made out of a single piece of mirror that just shifts, distorts and constantly reflects my image, changing it's shape in a very, very bad way and it's driving me absolutely nuts, constantly throwing me from obsessive-compulsive and self-targeted thinking to just pure anger I can't express or get out of my system. Every single point of reference is being reprocessed, restored and reshaped by my logical mind about every single fear I've ever had.

Will - when do you see the Therapist next? You should read her what you wrote above and ask her about steroid-induced psychosis. You must feel very scared when that happens and she could probably help you with those thoughts.

It's not scary, actually it feels like absolutely nothing, it's total crap, and this is the worst part, that anger that's just can't come out is just what I'm describing, complete and utter anhedonia and I haven't been getting even some real pleasure for a long time but that's another story... All I can tell you is this s*** is not right. What I have been writing these days is a dairy filled with stories inspired by experiences and explanations of the past to get me to understand some things and I think this is triggering even more stuff. As I said I 'm still feeling kind of on the edge and 95% normal now that I'm thinking about it again, sounds way too optimistic, realizing I'm feeling even better now. I'm seeing her on Thursday and I could possibly include this. I'm feeling fuzzy and my perception is still distorted, feeling like pieces matching out of different timelines. Now that I'm feeling even more comfortable to describe to you what's happening in my head is making me feel even better. I don't admit to myself many things, including feelings, thoughts etc, as I said I have a bad "thing" with self-control constantly fearing I might be judged... Old habits. And I admit not even those to my own self anymore. Everything is coming back to get me, running me down like a bulldozer and making me feel crazy. Spending time on the internets reading doesn't help either, making me worry at some point and these thoughts too that I 've been blocking are coming to get me too. I eventually realize that all this is silly or illogical, and this is why I believe I can handle this so well.

Okay, I have to include this. This has been the most incredible experience of my life, just to explain what's happening in my head when I take these pills and to everyone else. My mind starts to wander off to irrelevant thoughts and it just grabs something it doesn't like from the past. It tries to figure why it doesn't like it and starts creating possibilities and follows tangents looking for the fear that has caused it. Then it tries to solve it since it can't do otherwise because it needs to release this bad feeling. It goes on and on to past experiences and to other fears and holding back that has caused it to happen until it finds a starting point to solve. Then it starts looking for a logical and humane answer that could solve it and why it shouldn't be bothered or afraid of it. This happens for every single tiny thing you could ever imagine, every moment from walking down the street thinking about something random at that point that just nagged me 3 years ago, from when I was 5 years old and to the recent past always starting with the biggest and most horrible fears and feelings. Sometimes it creates heuristics that solve multiple past bad feelings all at once to minimize "processing power". It keeps unblocking and unblocking coming down back to the first point until every single one of them has been solved and then it keeps on with something else repeating the same process. It sounds like rocket science but this is what it basically does... From a point and beyond it becomes almost automated and it's just running and running, sometimes picking up even the most irrelevant questions that have nothing to do with fears. Last night I woke up and I realized that my mind at that point had started trying to solve equations I could remember from the math class back in school and philosophical, political and social type of content answers I had once asked myself. If you have seen the movie Limitless this is sort of what it felt like but trying to do all this thinking with a very fuzzy head. For just a couple hours I was feeling so incredibly smart I thought I knew how to take over the entire world. And this morning all my head does is just throbbing and I have a terrible headache, feeling almost like a normal human being again. Some times I ponder about things and ask myself why this, why that, questioning my motives and eventually understanding my actions and why it's wrong, but when it started it was like replacing rifles that fire every now and then with weapons of mass destruction that flare up in a row one after the other taking down literally everything in their paths and I was being such a massive egoist trying to constantly deny everything my mind was telling me because I HAD to be right in what and why I felt it. Back to the medical stuff. Prednisolone is down at 65 mg/day and I think like I could go back home now. I just need to change something this time around and I think I know what I should probably do.

No responses?... I'm not a savant. I have never been nothing more than the intelligent shy guy, but this is what it does... in detail. I guess you could call it dwelling on the past, self-reflecting, realizing or learning from your mistakes at a massive rate, or just constantly thinking about things you did not ever want to think about or accept for yourself with great intensity. I can't see things in my mind vividly or articulately and I don't tap into my mind and disconnect from everything else just to observe these thoughts. This doesn't happen all the time, they 're just random thoughts working in the background like everybody else's, but this is just what it's making them to do and they just do that constantly, pretty much like any racing thought you could describe you 're having in everyday life. I 'm not fooling anybody and this is actually what it does and even though it sounds inhuman to describe or realize, that's just it...

65mg is still high dose. I thought your doctor might taper you further than that. Perhaps hes just looking at the numbers and not seeing you. Maybe he doesn't realize the side effects you're experiencing? Just my opinion, I'm not a doctor, but I'd say your doctor needs to taper you off of prednisone, or at the very least taper the dose to below 40mg. Steroids are not a good fit for everyone- there are other options like IVig, etc.

You've probably heard that with ITP the treatment can be worse than the disease.? I read it first on the Mayo Clnic website when I was new to ITP. They warned ITP patients to weigh the effects of the treatment against low counts. Its just something I find important to keep in mind. Doctors can be so focused on treatment and cure that they lose sight of the patient!

I validate you for coping with this drug, but really its supposed to simply raise your counts not break down your personality. :laugh: Anyway... so what are your platlet counts now? good luck, thanks for sharing- take care of yourself!

here is a quote from a rhuematology article:

Treatment of Corticosteroid-Induced Psychosis

Whenever possible, tapering corticosteroids is recommended as a first step to manage corticosteroid-induced psychosis. Decreasing to the lowest dose possible, ideally less than 40 mg daily, or tapering and discontinuing steroids may be sufficient to improve psychiatric symptoms...

Last count was 176. I'm having blood tests tomorrow at the hospital to get my counts checked and get prescribed any other supplements needed since it looks like I will be taking these for a long time. I do think something might be going wrong though because my nose bled today, even just a bit and it made me worry. I know steroids make the skin thinner and wounds heal slowly and maybe it's just a random event and there's nothing really wrong with me just like last time, when I had 132 thousand platelets, and when I thought I had just 20 only by looking at the needle wound. This stuff isn't the best and to be perfectly honest with you it's not only fixing my ITP but many other stuff too I didn't even have a clue about. My advice to everybody out there: If this stuff is making you psychotic then you should go talk to a therapist. There's definitely something bothering you couldn't possibly know about.

I am in complete agreement with the other advisors. I think you need to tell the hema exactly how you have been feeling on the prednisone. I went to a local pdsa meeting and we joked around that cops practice getting tazed to know what that feels like but hemas don't take prednisone so they have no idea what it feels like. The hema just probably looks at the numbers and sees oh good counts, but might not know what your side effects have been.Also everyone responds differently. You may just react differently that other people. Luckily there are other treatments that might be better for your overall well being.

I 'm gonna talk with them and see what I 'll be able to do about this... These thoughts are slowly turning to anxiety and just feeling jittery so I don't really know where this could all eventually lead... Other side effects I have noticed is some ever so slight discoloration of the skin on my hands and acne that just keeps growing, along with facial hair growth (my beard isn't complete and it just keeps on getting fuller) and I've noticed my hair have been getting long pretty fast too. Supplements I guess could help fix the skin and everything else and I'm eating lots of yogurt to counter possible lack of calcium. Up until now, it's not looking terrible, psychosis is fading away and if you have any foods to suggest to help me get through this better would be a lot of help... There are just so many things I need to fix, my pride is absolutely shattered and torn into pieces and I'm ashamed for an incredible amount of things I have done to myself. Some things had been so fundamentally wrong you can't even imagine. That's just all I can say about the psychosis.

I think you have an emergency situation with your reaction to prednisone. You need to get some help fast, from your doctor or from an ER. I am very worried when I see your reports. I hope you are ok soon!
Erica

I guess there is no point holding back anything anymore... I have been trying to desperately cling to things that couldn't possibly offer not even a piece of satisfaction for the last couple years and I have had some severely bad complexes that I was coming to the point of not even admitting to myself. I was basically dead deep down constantly trying to just keep going on with the most unhealthy ways. I know that what this stuff is doing is because of my horrendous and ridiculous habits... I've been blocking thoughts, the past, basically everything, doing absolutely everything just out of habit trying to get the smallest amount of pleasure out of them. This stuff is destroying absolutely everything I have built because it's so incredibly unnatural what I have done to myself it goes completely beyond reason... I'm afraid to trust my feelings or do something and I have been struggling to find something to do with my life, constantly failing and going back to zero because I couldn't keep my motives. It's destroying a false identity that has been built upon forgetting and distorting one 's own beliefs by force and locking down one's self with means that go beyond reason... It's a terrible story of fear of failing and using means that are used to control beyond and after the fear is gone. It's waking me up... Today this evening I had no clue who I was, what I wanted, or what I was supposed to do with my life anymore since everything had broken down and feeling that my perception is distorted
between timelines was only because my mind was trying to find something new to attach itself to. It makes other people angry, agitated, detached but it's driving me crazy only because I was driving myself crazy. This is the entire truth. Autoimmunity honestly starts from some place else...

I split my daily dose in have, I take 45mg right now. So at 6am I take 22.5mg then at noon I take the other 22.5mg. I hate taking it all at once and have read you should split the dose so you body has it in it most of the day. It also said it was better for your adrenal glands long term.

Platelets are at 132... I said a few words about how this is making me feel and "making me face myself". The doses aren't going down. Symptoms are just getting better... Most of you probably think I'm trolling and I wish I was... My mind just keeps ridiculing me and on this thread. I just picked up a book to distract myself with. I can't let this keep going anymore. End of this thread...

I doubt that anyone thinks you are trolling... I know for sure that quite a number of us are taking you very seriously, judging by the responses. All of the commenters agree that we want to see you get medical help for what looks to us like steroid induced psychosis. As I recall, you were supposed to see a psychiatrist yesterday; did that happen? Did you tell him/her all the feelings that you have shared with us?

Will:

The truth is that it's difficult to be on this end and not be able to do a thing. None of us can help you. The only people that can help you are the real people in your life. Your parents, doctors, siblings, friends. We are a bunch of strangers who don't know what you were like prior to Prednisone, so we have nothing to compare this behavior to. The people who know you do. I would like to see more posts about your interactions with people. All of the posts about the random thoughts in your head are quite bizarre and scary. We are worried about you and for you. We have constantly prompted you to get help as this is not normal. Yes, behavior can be strange while on Prednisone but most of my problems with the drug revolved around the people in my life. I think most will agree that they also had problems with spouses, children, co-workers, friends, etc. I did not have time for inner struggles and self-reflections. I kept busy with work and family obligations. I was too focused on what I was doing to the people around me.

You are going to have to be more assertive about advocating for yourself. I don't think you are making yourself clear enough to your Hemo. A few words apparently are not enough. We have made suggestions and have tried to talk you through this, but until you act on those suggestions, things will not get any better.

We are here for you, always will be. But it's frustrating to see the agony you are going through and not be able to do a darn thing. We hear you, but we can't really help you. How did it go yesterday with the therapist? What suggestions did she have?

I don't know what I am supposed to do.. I didn't say the entire truth because honestly I am afraid of what might happen. It's throwing me out of my head just blocking the access to things I used to think about and directing me to do things I had no clue I wanted. It's throwing me in the front and beyond the words I usually use to hide behind and it's basically... solving the puzzle. I went for a walk downtown today again because I was going nuts and at some I realized it was subconsciously destroying all my fears. I was scared shitless not being able to just control or check my behavior and oddly I had a fantastic evening just sitting at a restaurant listening to music and basically eating, just feeling relaxed and enjoying without giving a single damn about anything or anyone thinking about what I could possibly do tomorrow to fill my time instead of going back to my habits ... This is just incredible. Also it's replacing my technical and chopped kind of nature of thinking with just.. feelings only.

Edit: I threw away all my drumnbass chopped sewage stuff because it's making me sick and I think I'm having thoughts about picking up the guitar I have left for years... I 'm starting to enjoy Frank Sinatra and thinking about going to Italy. This is plain weird... I have an appointment again on Tuesday to get checked again at the hospital and see how things are going. I think I can see tiny little spots in front of my eyes some times when it's dark but I don't know if it's just me or just noticing this for the first time.I bought some natural tears that I think could help and I'm basically waiting.

Platelets at 200 and steroids are at down 50 mg/day. New symptoms... I literally know everything and why everything happened in my past, costantly kicking me out of my head, massive anhedonia and constantly explaining to myself why my thoughts are depressing and why I shouldn't express them instead of doing something. This happens all the time.. About every single thing. I had a psychotic episode in which my self literally talked to me and put 4 simple things for me to do... It's also telling me literally to do things and be completely and utterly impulsive and I have to explain my every single action. Also, I used to have really bad right-left hand coordination. I don't. Anymore. Honestly I am developing a second right hand. I described about how I read a lot of stuff online and how my mind started solving my own complexes to the psychiatrist. He perscribed small doses of some medication to organize my mind and reduce anxiety. I can't recall the name. This is just utter and complete science fiction. I quit all my habits, I decided I would literally go out every day and I also had to literally put a block on wikipedia on my browser. As long I keep on doing something I can honestly enjoy symptoms diminish. This is just so terribly weird.

It is great to hear that your platelets are up, and the prednisone is down - although you are still at a high dose. It is also great news that your psychiatrist is taking you seriously. Stick with it and be patient with the process... it takes time for your mind to heal, and time to get the right mix of medications to get maximum sanity with minimum side effects; you may have to try different combinations to get it right, so don't give up if you don't get the results you want right away. Hopefully, you will be getting better sleep soon, at least.

You have shown a lot of courage, Will. I hope things keep improving for you.

Predniman,

Kudos to you for seeking out help! That takes courage. Hopefully the prednisone will continue to be tapered and your new meds will begin kicking in. I agree with your last sentence. Go do things that you enjoy and get off the computer! Just doing google searches can drive a person insane.

Well,thank you... Anhedonia diminishing and the meds seems to be working. I'm having thoughts and feelings I can't completely recognize as my own... Meds seem to be helping, brand name is Invega, says used to treat schizophrenia and schizoaffective disorder. Yesterday I was scared shitless because my mind was picking up everything from structure of speech to I have no clue what else. Today I woke up feeling fuzzy and uncertain about my what my actions should be and took the pills again at 9. Platelets today at 193 and went from feeling funny and stupid to regaining self-consciousness. I started picking up some stuff and for some reason decided to pick up math. I started playing with the numbers and thinking tricks. My mind started wandering constantly at some point "How could I possibly...". There are just so many things flashing in my mind and possibilities some times I don't have time to even check them. I spent about 2 hours literally picking up things and wondering constantly what I could do, just finding answers relentlessly about anything, re-organizing my speech and even habits. I 'm literally picking up the guitar again and teaching myself in no time and picking up old comic books for reasons I don't really know... Memories just flash all over the place at a massive rate and old possibilities are being reintroduced while I psycho-analyze myself on the run and change some things... As I said science-fiction keeps on happening...

Keep practicing that guitar. It kills two birds with one stone. It keeps your mind occupied in a positive way, and you're developing a talent. What kind of music do you like?

Did I hear you were playing or learning guitar?? What kind of guitar do you have? name? brand?

You taking lessons or self teaching??

I'm teaching myself... again. Tomorrow are blood tests. I think I gave it a logical answer to just stop doing it and it just took it since it couldn't find any holes in it. Today it started organizing all the observations I have ever done and started sorting them out, putting them into tomes if that makes sense. I've been reading A LOT of psychology to be honest, and when my mind grabs something it won't let go until it has fully understood it. The hole was extremely deep to be absolutely honest. The beginnings were there to begin with self-psychoanalyzing... Meds are working and I'm just sitting here with a silent voice swearing and spitting at me all kinds of "kind" words and some brain fog. It's just ridiculous at that point. Still feeling odd and jumbled up but sleep helps. I feel like my brain is being reorganized and yesterday I had an episode of mass confusion, feeling as if my perception was just a patched pile of metal. Literally this is a colossal change at this point. Hopes are up for tomorrow and I'm still waiting. Maybe I just needed to vent off a lot of hatred I had for myself for years. Not much has basically changed about how I feel about things. Just acceptance and venting. Thank you about the interest on the guitar btw too:)

Edit: Don't know much about guitars. Tuning it at the beginning was something I had to figure out for myself how to do.

Platelets at 180. Coordination massively improved. My thought process is becoming more intuitive and I'm becoming increasingly absorbed by the enviroment. I slept about an hour or two yesterday, took my pills, drank a coffee and went for a driving lesson. I made almost zero mistakes. What is going on within my head? I have no clue.

My son self-taught himself to play the guitar. He's quite good. He can pick it up and play just about anything. Keep practicing!

Yay you are sounding like you are on a much better path! Keep on doing things you enjoy!

I have a slight interest in music not just guitars! I sorta collect instruments!

I currently own 5 guitars: 2 acoustic, 1 twelves string, 1 classical, 1 electric. Also own a banjo, a violin, a madolin, a ukelele, a glockenspiel, a recorder, a celtic drum, a harmonica, a thumb piano, a steal drum, a rattle/ noise maker, a rain stick. Just bought a set of plastic colour tubes that you can bang each having its own note. Oh and 1 electric piano.

Took piano lessons and guitar lessons as a kid. All other instrutments I'm currently trying to teach myself to play! So far I can not play the harmonica, accordian. Played trombone in high school but tried one out a year ago don't have the lungs for it now!

Keep up with the music!

PS: yea tuning is hard I can not tune without a tuner and even then I sometimes give up! Tried tuning the 12 string guitar that was a fail so I just ask friends to help me with it! lol

Julia - that's quite a collection! Where do you keep all of that?

Hi Will,

When I'm on heavy dosis of steroids I'm not myself too.
Maybe not as bas as you suffer, but I guess it hits everybody in a different way.
I tried to put together a small Ikea chair once and could hardly do it.

Like the others said hold on. You'll be better once you get used to it (you do) and when you can reduce your dosis.

My advice is to exercise when you take steroids. This is good to minimize the physical sideeffects and in my case it helps me to feel more normal. With exercise I do not mean any really heavy stuff.
I'll take a walk in the morning after I've taken the pills and preferably during my lunch break and again before I go to sleep. Each of the walks maybe 30 min. Alternatively sometimes I'll ride the bike.
This really reduces the mental side effects for me very strongly. It also helped me to reduce the weight I've added. Yes, I agree it sucks!
I also got the advice from a doctor-friend to eat protein rather than carbs. Steroids make your blood sugar level go nuts. This is why most people turn in to chocoholics when they are on steroids. I've always been a chocoholic, but while on steroids I try to eat proteins instead. This does not mean you have to eat meat 24hours a day. I've for example changed my muesli in the morning to a protein shake. Less fluctuating blood sugar level will also help you mentally.
As already mentioned you need to watch your potassion intake. The steroids affect that too. Potassion levels influence your pulse/heartrate. I had 100 heart beats per min when I first took steroids. (Try to sleep wth that). The mentined bananas are good and also potatos provide you with it. (Evenso this contradics the low carb advice sowhat.)

Good luck and keep your head up. You are not alone!!!

Joerg

Sandi

I live in a small 1 bedroom apartment so I keep it everywhere! some under the bed, in closets, in the living room, bedroom, kitchen, on shelves in drawers everywhere!