medication sensitivities?

[Amy4891]

Is it common to have a bad reaction or get bad side effects at the lowest doses of almost every psychotropic medication tried? I have tried 6 different antipsychotics, I had bad side effects at the lowest dose, and can't take them. 4 SSRI antidepressants, bad side effects at lowest dose, can't take them. I also can't take Welbutrin, Depokote, Effexor, vistaril, This can't be normal right? I can tolerate a few medications at small or regular doses, but do not control my BP or anxiety symptoms these include buspar (did absolutely nothing that i noticed), lamictal could take 200mg, but not 300mg when tried an increase. Trazodone did ok on 150mg at night. Xanax, and Ativan, did ok on and has been the only thing to help my anxiety without bad side effects, and I have only taken them at lower doses. Is this a common occurrence or experience other people have had? I am starting to wonder if I just have problems metabolizing them or something???? I also can't take some pain medications tramadol not at all, and can only take one half to one lortab 5 and no more, I can't tolerate alcohol either it just makes me feel sick, not enjoyable to me at all. So what do you guys think normal or not?

[melikefeyza]

Hi Amy,
I have med intolerance too. They don't cause anxiety, not psychological but neurological symptoms as physical restlessness, extreme agitation. I believe all caused by extreme central nervous stimulation due to medication. May be ion channel disturbance  or enzyme deficiency in the central nervous system. Not sure but all align with CFS with extreme med intolerance. Many members of my family has similar reactions to meds and experience similar symptoms so I believe it is genetic for us.

My CFS started about 15 years ago after I was diagnosed with Tuberculosis. I developed extreme reaction to the medication (I used to take 4 different drugs). My tuberculosis healed but I never recovered afterwards. FYI I was very strong before that happened, never had a medical issue.

In the following years my condition got worse and my neurological symptoms became more severe and permanent. I tried to take different drugs over time but with medication the symptoms get worse and unbearable. I can't even leave the house and have to spend most of my time in the bed.

Most irritating, unbearable symptoms are extreme agitation, restlessness and fatigue. I also have headaches, muscle twitching and gut symptoms which also get worse by almost any medication.

I have been searching the web for people who experienced similar symptoms like CFS and severe med intolerance. I am also interested in getting med suggestions that worked/not worked, sharing any knowledge that can help.

Thanks
Emi

[Amy4891]

I called the pharmacist and they said it was ok for me to cut down on it until I can call my doctor on monday. I feel a little nervous, but feel a lot better with taking out the morning dose overall. I was still nervous when I did take it in the morning, so basically made no difference there anyways.....

[Crystal413]

I'm afraid to tell you what to do since I'm not a dr. I don't know what the taper schedule for the med your on because they are all different. Since you are afraid some of your sx will come back, I would hold off until you can talk to your dr. If you can't talk to him this weekend, Mon. Will soon be here.

Do you have any anxiety meds to get you thru the weekend to help you? Other things you can try is deep breathing, definitely walking, that helps me a whole lot, buy a meditation cd, it really helps you to relax. I lay in bed and play it, it needs to be very quite. You can listen to the same one again and again. If it works for you, buy another one. You may not be able to find a yoga class this weeknd but when you can, this would be a very relaxing thing to try.  Hope this helps, hang in there, Crystal

[Amy4891]

It is a capsule but I take it twice a day, do you think I should cut my dose down to once a day until I can call my doctor. I am just worried my other symptoms will get worse. I don't know what to do, but I am all depressed, and feel like I really hate myself. I think I am having anxiety too, I feel paranoid to go to sleep. Maybe if I just bang my head on a wall that will help, lol, just kidding.

[Crystal413]

Is it the type of pill you can cut in half. If so I would ask the pharmacist if it is safe to do. Is it at all possible you can call your dr tomorrow (Sat)? I can call mine on the weekend, as long as it is less than 15 min there is no charge. If you can't I would talk to pharm. and reduce the dose. I would hate for you to feel so bad for 2 more days. This is just what I would do, you know I'm not a dr. Feel better soon, Crystal

[Amy4891]

I think this gabapentin is giving me weird side effects, it is making me feel like a drunk person for about half the day after I take it in the morning. After the drunk like feeling wears off I just feel like crap, and depressed, in pain. This is just awful, I am going to call my doctor on monday.

[FlyingOrcas]

On the lowest dose of trazadone I had a severe reaction, I couldn't breathe, my heart was racing, I got seriously depressed. Basically I had such a bad panic attack that I was begging for someone to bring me to the hospital. On cipralex I was so angry and depressed on the lowest dose that after two days I had to say enough is enough. Wellbutrin made me manic. Abilify gave me headaches and earaches and awful restlessness.

[Amy4891]

I was on lamotrigine (lamictal) when I started rapid cycling. I had been on it for somewhere between a year to a year and a half.

I don't know what to do anymore, I am just so confused and frustrated.

[Anonymouse88]

Yeah, it's unfortunate that gabapentin, while a great anticonvulsant and great at relieving neuropathic pain, really hasn't stood up in trials as a mood stabilizer.  There's a slight chance that it only works in a small subset of people, which would be hidden in a heterogeneous sample, but it's not as good as say lamotrigine or tegretol.  Just cutting out the aches and pains might help stop depressive cycles, since pain can really feed into those, and if you tolerate it and it helps a bit, it's worth staying on.

It makes sense that your medication sensitivities would be genetic.  I think my grandfather cuts a lot of meds in half, and my mother has only ever been able to take one dose of aspirin before getting ringing in her ears, which is a sign of aspirin overdose.  

Yeah, ECT is kinda scary, although it's apparently a LOT better than it used to be.  TMS (transcrainial magnetic stimulation) is a lot milder, but pretty new, and still kinda experimental.  There's lots of super cool research on brain function using it as a tool, though--you temporarily inhibit a brain region in a healthy person to see what that brain region was doing.

[Amy4891]

I was talking to my mom, and she said my dad use to make the same complaints about being sensitive to medications. So I talked to him about it and he said he has the same problem. Other people have said it seems to be something that runs in their family too. So what ever it is I am almost certain it is genetic.

Oh I didn't think about that. Some enzymes are in the digestive tract, and some are in the liver. Hmm that makes sense.

I don't know what is up with the heart palpitations. I have been having other anxiety like symptoms without feeling particularly anxious, or having an actual anxiety attack too. I had sweaty palms today too. I have been having such weird stuff going on lately though. I really don't know. I am still rapid cycling too, and have been on the gabapentin for 3 weeks now. My mom says it seems to only be helping about 50% with everything. I was given it as a kind of like 3 in 1 pill for; a mood stabilizer for the bipolar, anxiety, and for my body aches and pain. I am just so frustrated with the whole medication thing.

I probably do drink too much coffee. I really do think it is the bipolar that drove me to drinking though, lol. When I was like 20 they put me on the depakote, effexor combo. I was only awake about 4-6 hours a day. I started drinking coffee trying to wake myself up, and stay awake. After that I started drinking coffee every morning. A couple years ago I was in a major depression for about 4 months, and it made me again where I could not stay awake. So I started drinking coffee in the afternoon too. I have already been trying to cut down, so far it is going ok. I figured it probably isn't that healthy. This stupid bipolar I hate it I am so sick of being bipolar, I just want to rip the bipolar out of me, lol. It doesn't help that the treatments for it are no good either, at least not for me. I told my family today no matter how bad I get to never let them shock my dang brain, lol.

[Anonymouse88]

The enzymes you (may) lack might not be in the digestive tract, but in the liver.  I don't know how testable they are, though, because I don't think they're the ones on a liver enzyme panel.  Taking extra digestive enzymes probably wouldn't hurt, though.

If you feel like you're having heart palpitations, ask about a Holter monitor.  You carry around a portable EKG machine for a few days while it takes continuous readings.  It would probably be helpful to write down the exact times when you feel like you're having heart palpitations, and they can look for anything abnormal.  If you get them really often, then a regular EKG might do it, which would be easier.

Most tablets are cuttable, the exception being anything labeled as extended or sustained release.  These usually have a warning telling you not to cut them in the info sheet.  You should still ask a pharmacist first, but you can likely use that to help taper to avoid withdrawal symptoms.  A compounding pharmacy might also be able to make a lower dose pill special for you (you'll probably need a prescription from your doctor).

I sometimes get a thing where my heart skips a beat, and takes a few really slow beats afterward before going back to normal.  If this is what's happening, it's probably harmless.  I noticed that too much caffeine increases it though.  If you drink a lot of caffeine, try cutting back for a while and see if that helps.  Just don't go cold turkey, because you might get really nasty headaches and other unpleasant side effects.

[Amy4891]

I think with different genetics it is different specific enzymes that are lacking. So the ones they sell at the health food stores may not fix the problem necessarily in these cases.

I took the Ativan, it sure did put me in a better mood, however did not stop the heart palpitations,lol.

I think I will get some fish oil, because I can't eat fish everyday, lol.

[Crystal413]

My kids took enzymes before a meal to help them digest and get more nutrients from the foods they were eating. The nutrionist recommended this. In my experience, enzymes are harmless. Good idea to research and see if this would help you.

Even on a low dose it could still effect you coming off any med. It is usually easy to cut pills with a pill cutter. Cut them once and then if you need to cut them again. Depends on how slow the taper. If it is capsule try to get it in tablet form otherwise you can open it up and split the powder. Some meds are not suppose to be cut so ask a pharmacist or dr. Some meds have worse withdraw sx than others. See if you can get info about the drug your on and it's withdraw sx to give you an idea. Your dr should know too.

I think your experiment sounds like a good plan.

Remember the fish oil (with no mercury). There is a lot of positive research on fish oil for mental health.

[Bubulous]

I agree that sometimes our bodys tell us that we need sugar, sometimes I have to convince my mind that it does but it usually agrees with me.
There are those who see us as crazy but I think the same thing about them.  They complain about the world around them and I struggle with the battle within me.
Anyway I wrote this poem about myself:
They tell me stop working live for the day
They make it sound easy here's what they say
They say I'm an addict for coping with pills
They say I'm escaping the way that I feel
They say I'm ****** up because my parents were mean
They say I'm suicidal from the trauma I've seen
They say I'm an artist for the poems I write
They say that I'm gifted, perhaps they are right
They say I'm spiritual the people I've touched
They say I'm heartless the women I've loved
They say I'm challenging the doctors I see
They say I'm like jello being nailed to a tree
They say I'm bipolar with a complex brain
They say I'm codependent I'm going insane
So try on my shoes let's see how you cope
If you don't go insane perhaps there is hope

[Amy4891]

I have gotten several responses from people having the idea that being sensitive to medications could be an enzyme problem, and a lot of the enzyme problems can be genetic. I actually posted this question in 3 different places, because I really didn't know where to post it, lol.

As for stopping the meds I was on the lowest dose, I guess you could cut the dose in half and taper off that way....??? That would only work with tablets though....Idk. I am on gabapentin now, and will continue to take it, but at this point I can't really tell how well it is working, so I will wait and see. It is easy to not take the meds when they just make you feel sick. I probably really need them to, but they just don't seem to work for me.

I keep feeling like I am having heart palpitations, but even when I don't feel particularly anxious, and no anxiety attack either. Haha I don't know it is kind of weird though. Have been to the doctor twice they say they find nothing abnormal. I try to ignore it, but it is really annoying, lol. Maybe I should post a question about it in the anxiety forum.....Maybe I should do an experiment and take an Ativan...if it works and stops the heart palpitations I can then assume it is anxiety ....right? I think I will try that. I try to avoid taking it as everyone says they can be addictive, and I already have enough problems I don't want to get addicted to anything, lol. I don't seem to have any bad side effects with the Ativan though. I am on the lowest dose though. 0.5mg. I only take it as needed.

I keep craving Fish, and dairy (yogurt mostly), and sweets, sugar. I know that the sugar and sweets cravings may not be healthy. I do however think some cravings are, as it would make sense for your body to crave certain things that have something in it your body is lacking or needs more of. I did start taking a multivitamin too though.

I have been to the hospital a few times for different things, a lot of times they are not very helpful, lol. I may try to go to the clinic to see if they can help with anything. I probably do need some blood work done on a few things, but no never had a vitamin check.

Yes we are all unique, and can have different reactions and stuff, but not everyone sees it that way, but I am glad that you do. Sometimes if we experience things out of the ordinary (especially if people know you have a mental illness), sometimes they get labeled, psychosomatic (which everyone thinks means imaginary illness, but is not the actual definition of it), or hypochondriac, or something like that. Some people would rather be judgmental, instead of trying to understand and be open minded. Which in my opinion is very sad and unfortunate really.

[Crystal413]

Amy, Unfortunately I don't know why I am sensitive to so many meds. My grandmother couldn't take any meds not even a Tylnol, everything made her sick. Maybe it's hereditary and that's where I got it from.

When you get insurance maybe you can find a dr that practices both medical and natural remedies, or a Naturopath.

As for you getting sick stopping your meds for a week. Don't worry you are not abnormal with your reaction to stopping the meds. The dr always advises you to taper off meds and not abruptly stop them. A majority of the time you will have withdraw symptoms. Everyone is different in the way they react to meds and withdraws. Same goes for symptoms. Just because their not listed in literature doesn't mean you can't experience them because we are all unique.

I know this sounds strange because I couldn't believe it myself. I went to the bathroom all of the time a few years back and had done so for a long time. I went to a urologist. They did a test to see how much I was emptying out urine. Did another test to see how much was left in my system. There was still urine left. They then did an X-ray. My wole intestinal tract was full of number 2, even though I went everyday. Boy was I in disbelief. They explained that my intestines were pushing on my bladder making it impossible to empty completely causing me to go to the bathroom frequently.
There solution was to do the same cleanse as you would do if you were having a colonoscopy. Then to have a better diet because I don't eat very much and drink either prune juice or take something like Benefiber and also to try and eat foods with fiber in them. I don't know if this could be the issue for you. I can tell you I didn't now I had this problem.

If you decide to go completely off med be careful and have a dr lined up in case you need him/her. You know you can always go to the hospital. I have to take meds no matter what or I would be in bad shape. If and when you withdraw from your meds, I would do some research and go to the health food store (if you can't go to dr yet) and your still having problems. Your body will be free of meds and you could try some supplements. One at a time to see how your body reacts. Have you ever had bloodwork done. In particular, Vit D, Vit B's and iron? I take Fish oil (without mercury). I also just started Deplin that my psyc dr prescribed for me. Research this, it may help you.

[Amy4891]

I know a lot of people who have a mental illness usually end up with co-morbid ones too. Meaning a lot of times mental illnesses overlap each other. Sometimes the symptoms of one can also be a symptom of another. I learned this as I researched more on mental illnesses. It made a lot of sense in that it is sometimes hard to get the right diagnosis because of this. Most people with a mental illness usually get diagnosed with at least one more. (This gives me an idea to post a poll on here about co-morbidity).

I have noticed that even though when we have more than one diagnosis we can experience them independently from each other. Sometimes problems with one can set us off to have problems with another, and another (depending on what problems you have or how many diagnosis') consequently creating a domino effect amongst them. If we are unable to stop the domino effect at some point we become more prone to cycle not just through the bipolar cycle, but creating a cycle with the co-morbid mental illnesses as well, then it becomes a cycling domino effect. It can go on forever until we find ways to stop it. Either by medication, and/or by some self realization and awareness and coping skills/strategies.

I use to write poetry a lot too. I think I used it as a way to get my strong emotions out, and a kind of way to express them. I do think it was therapeutic for me. I really didn't have anyone to talk to about how I felt either, so it was very much a way or an out let to communicate to the world how I felt. I think there is a lot of writers amongst those with bipolar. There has been some research done that has linked bipolar and creativity. There are also a lot of artists, composers, and musicians, that are bipolar. Writing is actually my preferred method of communication.

I am actually hoping that maybe some of my journaling will help some other people as well. I will definitely share what I have learned through research, and experience with others. Knowledge and wisdom are important, and educational therapy does help too.

[Bubulous]

Wow,
You have got a great plan!!!
Since my first day in treatment in 2011 I have filled up 18 journals with work that I have done to better understand my mood among other things.  I had to figure out why I had PTSD, how that and my addiction tied into my mood swings and well....I have written a basic summary that is my final self diagnoses based on what I had learned:

Here is the story of my self discovery,

When I first got to treatment I had no diagnoses for any mental problems.  Then I found out I had chemical dependency.  When I write my poems I take a sentence or a word and make it into a long poem.  That is why i try to drag emotions and information out of people on here.  Asking me why you are depressed is a loaded question.  I need to know so much about the history of people's lives to make a determination about why they are depressed.  Anyway I write a lot of poems and they are more about self discovery than anything else.  I wrote poems about my childhood, my addiction, my emotions, my time at war, and being bipolar and the mood swings associated with it.  That is why it is so easy for me to empathize with people on here there isn't much I haven't seen and there isn't a whole lot that I haven't learned about it.  
When I was diagnosed with chemical dependency I sit down and started journaling.  I had to get to the bottom of the reason I was susceptible to becoming chemically dependent.  I attached that to the Iraq.  Then I was told I had PTSD.  Again I sit down and started writing.  I had to tie in why I had PTSD and how it was related to the war.  I came to the conclusion that the things I saw in war were internalized and I had no coping skills to deal with that.  Then I went manic and they diagnosed me with bipolar.  Again I sit down and started working on why I was bipolar, when it first began, and how it related to the PTSD and CD.  I came to the conclusion that my childhood was tough and that was the reason that my bipolar became onset.  Iraq was the reason that I fell into manic depression, and the manic depression was the reason I was CD.
That was when I was released and that was good enough to keep me clean for a while and have closure.  Unfortunately that was not the end.  I met a girl named Christine and after she moved in with me I started to fall back into depression and when it got to the point where I got suicidal I find myself back in treatment 6 months ago.  I came in with all the knowledge that I had before.  I had the same psychiatrist that I had last year and he had the charts to bring him back up to speed.  We started where I left off last year.  The first thing he taught me was thought stopping.  I was told that feelings cause emotions and emotions cause behavior.  I started working on thought stopping but didn't get anywhere for a while because I stayed in manic depression for three weeks slicing my wrist on the 2nd week.  When I was better and out of the depression I started working again.  I noticed that my hand writing was better when I wasn't depressed and I could concentrate better.  That is how I realized that as I used over time when I tried to stop I couldn't because I was so depressed I couldn't concentrate and figure out why I started using again.
Once I realized this I linked Christine to the depression, but wasn't sure why.  I called and told her to get out of my house and go back to Louisiana and she did.  If I know something is a problem I have no regrets in destroying it.  Once she left my doctor told me that I was super codependent.  I denied this for a while but eventually read the book and realized how that was true.  I saw that based on how much flattery I get I would become manic.  Based on how much criticism I took in I would get depressed.  So again I looked back at my life to see how my codependent behavior had caused everything that had happened to me.  I came up with the codependency fed the bipolar and the PTSD which both of caused the addiction.  This was the last thing I learned before I got out this time.  I met a new girl while I was in treatment and she came to pick me up when I got out.  She was the most beautiful girl I had ever met and she loved me dearly.  At a point I broke up with her twice.  As we started falling apart I got more and more unstable and I started cutting (which I realized was the same thing as using as it releases dopamin).  I started texting and calling like crazy crying every day.  I became depressed again and when I came out of it I started writing again.  I realized that every time I lost a woman that I cared about I fell into deep depression.  I had to look back and see how that effecting everything else.  I realized that the childhood that I grew up in gave me a distorted view of what love is supposed to be like.  I realized that just like using I needed that instant gratification that she still loved me and it wasn't over.  I realized that after I got as much "high" as I could get from a relationship I got bored with it and started to pull away.  I realized that if I committed myself to the relationship even though I wasn't happy I would use again.  That is when I realized something that is not likely the end of this self discovery but is the foundation for all of this.  I realized I have obsessive compulsive behaviors.  Again I had to look back and see how that has affected my life.

Final synopsis (for now)
The childhood I had caused the PTSD to start.  The PTSD was the cause for the onset of my mental illness.  The onset of my mental illness made me super codependent.  The codependency started the as a way to escape.  The OCD fed the bipolar and so on, vicious cycle.  The PTSD from my childhood and the codependency made me susceptible to PTSD from Iraq.  The PTSD from Iraq fed the addiction.  Without any more excitement and that adrenalin rush that I got from Iraq I was bored back in America.  The addiction caused loneliness which caused me to get back into another relationship.  The codependency from the relationship and the addiction caused depression.  The depression made it impossible for me to leave the relationship.  Her cheating on me caused the mixed state of mania and manic depression.  The mixed state caused the obsessive tendencies to kick in.  The obsessive behaviors (calling, texting, crying) caused the addiction to climb to a new height and sent me into a very unstable form of psychosis.  The psychosis caused my first suicidal thoughts which lead me into treatment where I became manic again.  Finding Carolyn in treatment this time and falling in love with her caused the mania to come back.  Her ignoring my calls caused the OCD which could have led to relapse had I not realized that the obsessing over Carolyn was the same as obsessing over pain pills.  I needed my next fix of Carolyn.  I started practicing patience and not obsessing and I have gotten pretty good at it.  I may have thought I learned too much but it is quite the opposite.  

Anyway I wanted to let you know the progress that I made by working my but off to fight depression and you have the right attitude to do the same.  There is no cure for what we have but we can gain knowledge to fight it.  Get control of your thoughts and never stop learning.

[Amy4891]

Thank you everyone for your responses. I am sure I will get all my weird symptoms figured out eventually, and from the way I see it is it might take quite some time to get it all figured out.

I was thinking about doing some journaling, amongst some other things I can do on my own to try and help alleviate some of my symptoms. Like better diet, a relaxing bedtime routine to help me sleep, maybe some light exercise, etc. I thought about herbal supplements, and stuff, but someone mentioned if I have sensitivities to medications I may have sensitivities to some herbal remedies and stuff too, which actually would make sense.

Since I can't get a therapist right now I am going to have to be more self reliant on learning coping skills/strategies. I thought about getting some self help kind of books too.

I am going to have to do these things because obviously medications are not agreeing with my body. I have had bad reactions to some birth control pills too, an extreme and rare reaction to the herpes 2 (genital) virus. It seems my body is hypersensitive to a lot of things...sigh. I will get this figured out, and if not oh well I guess.

[Crystal413]

A Urologist would be the best dr to go to for this issue. They will talk to you and probably run some tests.

[Amy4891]

I pee/urinate a lot too, and I can't hold my urine at all or it gives me horrible cramping. I thought maybe it was just an exaggerated sense of pain......Idk...

[Amy4891]

I wondered too if I might have something like fribromyalgia, and have looked it up, and I seem to have most of the symptoms that are common with it. I have just had problems getting things figured out with doctors mostly I think because of my lack of insurance. I asked the psychiatrist if the body aches could be caused like a more permanent side effect of the meds and she said no. This was a crisis psych. My regular psychiatrist didn't even know body aches could even be a side effect of the Geodon or Latuda which is the ones I got the body aches with. Once I went without any antipsychotic for a week, and I got real sick with a bad headache, shoulder, and neck pain and tingling, and thought I might have been having some withdraw symptoms. I even ended up in the psych ward because when it happened it made me suicidal, and I asked them if maybe it was a withdraw symptom, and they acted like they didn't know anything about it. I just keep getting the run around from all these doctors, and it is frustrating. I hope I can get in with a good doctor when I get my insurance in July, but I just am going crazy wondering what is wrong with me, and is hard not to think about when I am constantly in pain. I really don't like the thought of just being miserable for the next three months sitting around waiting and doing nothing. :-( I thought about doing a detox actually already, but then I wondered if I had some liver or kidney issues the detox might make them worse. Do you know the reason you have medication sensitivities? Actually now that I think about it I have gotten body aches from drinking one alcoholic beverage before a few times, and this was even before I ever took any antipsychotics. Maybe there was already something wrong with me and somehow the antipsychotics just did something to trigger it. Heck I don't know, and I will probably never know until I find a good doctor that is actually going to work with me, and help me, lol.

[Crystal413]

One more thing. My psyc dr prescribed Deplin for me  which is L-Methylfolate (a breakdown of folic acid). Don't worry it's not medication. You need a rx and Deplin has a coupon on line. Research it, you might want to try it. Over the counter has fillers and is not high quality.

[Crystal413]

It is difficult when your on 2 or more meds at the same time to know which one is causing what. For some people just have one works, it's when you put it in a mix that changes things. It's best to try one at a time if you can.

A thought, I have heard many people have side effects months lasting up to a year from a drug. I know yours temp went away but I'm wondering if the ones you tried before and stopped could be causing your body aches. It could just be one of them out of the mix. I too am very very sensitive to meds and take very low doses. Have tried many and had to stop.

Have they ruled out Cronic Fatigue Syndrome or Fibromyalgia? Have you thought about getting a detox cleanse at the health food store?