Medication Induced Dystonia, Anyone Familiar? Damn that Conversion Disorder Diagnosis Blahhh
I'm Monica in New Orleans, LA. I can COMPLETELY relate to what is happening to you and apparently, many others.My husband (an army vet) of four months has had Dystonia, seizures, ataxia, myoclonus, and severe anxiety for the past four years (now it is only dystonia). He has been wheelchair bound more times than I can count due to severe dystonic movements in his legs and other areas, bad tremors, grand mal seizures, vertigo, and just plain not being able to walk. It came about after he overdosed on Heroin on Xmas Eve 2005 (he was 19). He went to the ER and he wasn't having seizures or dystonic reactions UNTIL they administered 6mg of Ativan for withdrawl, I suppose because they assumed he was a chronic user (it was a one-time use relapse). So that led them to give him about 7000mg (!!!!!!!!) of depakote (valproic acid) to stop seizures. And then Warfarin and possibly Dilantin. It all started from there. Then everything seemed to just snowball. They gave him so much medication (he's kind of a big guy) that doctors who saw him said he should be dead or in a coma. They kept giving him more things to treat the side-effects of all the other meds, and then those caused more side-effects, and so on. He spent about 3 years on extremely high doses of badly interacting medications including antiepeleptics, antiseizures, anxiolytics, benzodiazepenes, antiemetics, dopaminergics, antidepressants, SSRI's, and anticonvulsants (all known to be dystonia-producing). At any given time all of these were mixed. And no, I'm not exaggerating. He has probably been on about 30 different medications over time, almost all in crazy high doses. So his condition flucuated so much, ranging from being able to jog a little bit to not being able to move and barely seeming conscious, nobody could figure out why. Apparently, nobody knows how to connect the dots, and it seems as if the doctors he saw slept through drug-interaction class. So the last neurologist he saw not only ruled out hypoxic brain injury (which is fine and maybe correct), he refused any tests for dystonia and sent him to a hypnotherapist and then to a psychiatrist, who we are seeing now. You can probably guess what his "diagnosis" is. Yes, Conversion Disorder and/ or Psychogenic Dystonia. LOLLLLLLLLLLL YEAH RIGHT! So I finally had enough, and about 5 days ago I started researching Dystonia, drug-induced dystonias, and all the meds he took and their interactions. I showed his psychiatrist and thankfully he was receptive and somewhat in agreement with me, though he disregarded the side effects of the meds that I found, saying he never heard of that. (I attached one of the presentations to my thread, tell me what you think). He agreed that my husband may benefit from Levadopa, but wasn't comfortable prescribing it since it wasn't really in his field of expertise. So he did something very nice and called the best neurologist in the state (and one of the best in the world) and made sure we got an appointment. We are looking very forward to that. I was able to piece together specific groups of meds that he took at different points in time, the dosages, why they they gave it to him, and the side effects and interactions. I will be presenting it to the neurologist, so wish me luck. The thing that supports my theory is that he is off almost every drug that can induce dystonia or ataxia, excluding 2 (clonazepam and primidone), but at pretty low doses. He is also on suboxone and paxil, which would boost his dopamine and serotonin, which is necessary in treatment of dystonia. Now the only thing that happens is that he walks very carefully and if he gets startled then he will lock up and fall. It's nowhere near as severe as it used to be, but still dangerous. Just 2 weeks ago he fell and split an artery in his forehead. So that is my dilemna with dystonia. Has anyone else here had an experience with drug-induced dystonia? Or even a resource about it? Anything I can collect for the neurologist will be helpful to us. Thank you, and take care
Tags: ataxia, conversion, disorder, drug, dystonia, essential, induced, psychogenic, psychosomatic, tremor
- Attachments:
-
-
Dystonia.doc, 32 KB
-
Replies to This Discussion
-
Permalink Reply by ramona on -
Just checking - you are not in Texas, are you? Will tell you why IF you are...
Ramona
-
Permalink Reply by Monica Coogan on -
No hun, I'm not, I'm in New Orleans, LA. Not far from TX though, why is that?
-
Permalink Reply by ramona on
-
I was concerned that you might be heading to a "top MDS" who actually specializes in psychogenic research, and that is the last thing you need right now! If you are going to a doc in LA, it is not the doc I was thinking of.
Ramona
-
Permalink Reply by Monica Coogan on
-
Hahaha no, this man (you can google him, jayaraman rao) specializes in parkinsons, movement disorders, etc. plus he's taught at Columbia U and LSU and he does research studies and writes books about those things. I think he will do the trick.
-
Permalink Reply by noelv on -
Are you taking him to Tulane? That is probably the best bet for having an experienced neurologist who has seen enough cases to help you and I hope that is the person you are seeing. Dystonia presents in so many different ways that I can almost say no 2 cases are alike. At least its true from my communication with other Dystonians. Drug induced Dystonia is well documented. You can do a search for abstracts in Neurology and Neuroscience Journals and while you can't access the articles, the neurologist should. the abstracts will point him in the right direction. BTW, I am surprised he has not had a brain MRI (not a CT scan which uses x-rays) to see if there are any lesions or abnormalities. And you don't need the best neurologist in the world, just an experienced good movement disorder specialist. Neurology is a very wide field. Good luck and let us know how you fare?
-
Permalink Reply by Monica Coogan on
-
He had CT and MRI scans in the beginning, and they were always normal. However, since Dystonias sometimes do not present unless you are in motion or having an episode, you should have an FMRI which monitors you in motion. My hubby never got one, they refused it. Thank you for the suggestion, I will certainly consider it if this one doesn't work out. I believe we found a great one though, his name in Jayaraman Rao, you can google him to see his credentials, he sounds great and only recently came to New Orleans. See actually, Ochsner is the place that dropped the ball to start with, by giving him that much freaking Depakote (7000 mg WTF), and when he got moved back to the Paolo Alto VA hospital (he was in the army), they just didn't care enough or have the expertise to treat him so they just went on a wild drug-prescribing spree : ( so here we are.
-
Permalink Reply by Joe on -
Yep, unfortunately, I do know what your husband is experiencing firsthand. I was diagnosed with Tardive Dystonia (drug-induced) in August of 1999. Fortunate for me, I live in NE Ohio which is home to the Cleveland Clinic, believe it or not, one of the best hospitals in the world. I had been taking Prozac and Buspar,one an SSRI and the other a "safe" (safe in this instance meaning non-addictive) anxiolytic. SSRIs (like Prozac...and Paxil, I'm afraid) and the other drug I was taking, Buspar, have both been shown in case reports to cause dystonia. As I'm sure you are aware based on your research, almost every drug you mentioned that your husband has been taking has been linked to drug-induced dystonia. It is criminal the ignorance of physicians on this point. I'm not a conspiracy guy, but it's almost like a de facto "conspiracy of silence" in order to protect the prescribing physicians from legal action. I hope your next neurologist is not a member of the club and has the courage to call a spade a spade...it sounds as though your husband is about as good a candidate for the "tardive" diagnosis as it gets...and that's not a good thing. Unfortunately, dystonia (drug-induced or not) does not show up on any tests unless it is caused by some brain lesion...which is very rare. It is a clinical diagnosis, so hopefully, your guy knows something about dystonia.
Good luck,
Joe
PS Once you get your diagnosis, I would STRONGLY consider legal action. I think it's the only way these psychiatrists and neurologists are going to sit up and take notice of drug-induced conditions...is if they're forced to pay for their mistakes. Feel free to e-mail me. I can give you the number of an attorney who has been successful in winning awards for people who have suffered a drug-induced movement disorder. kelleyjoe@att.net.
-
Permalink Reply by Monica Coogan on
-
thank you very much. Im sorry to hear your story, however, my husband never took any neuroleptics, which are associated with tardive dystonias (late onset). He also never had dystonia in his face, which would indicate the tardive kind. The tardive kind would not have improved much just from getting off some meds. It all started basically when he overdosed. he wasn't having any seizures when he was brought in. so bc they assumed he was a chronic user they gave him Ativan to prevent bad withdrawals. But they gave him too much and he had a seizure. so to stop those they put him on 7000mg of depakote (WAY too much), which would have caused any of these: essential tremor, ataxia, dystonia, and loss of seizure control in high doses. so throw warfarin and possibly dilantin into the mix and its pretty safe to say that's where he got it from lol. Yes i agree he probably has one hell of a lawsuit. he also got hypoglycemia, possibly caused by propanolol OD. sooooo there are some docs i would like to deal with personally. i will email you to get that lawyers name. thanks
-
Permalink Reply by Monica Coogan on
-
btw just for kicks they gave him 2400mg of buspar at one point!
-
Permalink Reply by Monica Coogan on
-
excuse me i mean neurontin
-
Permalink Reply by robert on -
Hi Monica,
That is a shocking story. ALL psychiatrists are very aware of possible Dystonia reactions to neuroleptics such as Risperidone etc. They just choose to ignore those dangers and will if necessary prescribe another medication to treat whatever side effects arise. I have often thought that before prescribing such medications doctors should try them themselves. Of course they wouldn't, claiming that it would be too dangerous.
Best!
Robert
-
Permalink Reply by Monica Coogan on
-
well thankfully he was never given neuroleptics at all, so his condition would not be tardive. but he was given drugs from all of the other movement disorder causing drugs except for antipsychotics. it is shocking, you have no idea the ups and downs of his condition, it was amazing. He is off mostly everything now. he's on clonazepam, primidone, suboxone, and paxil. the only symptoms he shows now are gait related, and he sometimes jerks his hands when writing or reaching for something. but otherwise he is relatively symptom-free. unfortunately, gait problems are some of the worst problems because stimuli make him freeze and fall. doctors kinda suck sometimes but drug companies always suck. we are collecting info for a lawsuit. most proceeds to dystonia research.
© 2009 Created by Marie
