Avoidable Meds for Dystonia
Hello All -
I am adding this link of a list of drugs that I compiled using the Physicians’ Desk Reference (the drug bible for docs and NPs - medicine is unsurvivable without it ! ) .
There is another drug that I now have to add to the list - that is LAMICTAL , which often is used for seizure control and in epilepsy. I have received some reports that it has lead to drastic effects in dystonia patients. Thus, please avoid it if possible.
Go to this link, scroll down to Avoidable Med List- and print it out ! Save it !
http://care4dystonia.org/index.php/our-publications/
beka
Response from Jen
Hi Beka and all,
Thanks so much for posting this. My dystonia was caused by Reglan and Compazine and I have met hundreds of people over the last 12 years of dealing with dystonia that also have drug-induced dystonia or similar movement disorders.
These medications can disable you for life and if you already have dystonia are very likely to make it worse.
-Jenelle
http://www.geocities.com/Petsburgh/6691/mystory.htm
http://neuronswithdystonia.blogspot.com
Response From Ellen
This is a great thread!
I am one of those that is affected by many meds out there, even those that are supposedly “safe” or even used to help TREAT a tardive reaction. (The med that got my generalized issues going full bore was Benadryl, a drug that many with generalized issues have problems with. See this link for more info on this type of reaction to Benadryl) Of course, now that I’ve ‘been there, done that’ the information is now coming to the surface that they are not as safe as once touted. Another one that I have trouble with is Zofran (Link takes you to the Mayo procedings about Zofran reactions) Getting the word out on these meds and having a good list is so very important. I wish I could count the number of times I’ve gotten “the look” when I tell a doc about all the meds I’ve had reactions to. When they contradict me and tell me that it’s not possible, I want to shake them. Docs think I’m crazy for refusing the meds when I’m in such terrible pain, and I’ve had to undergo very invasive bone surgery with only a local because they don’t know what else to give me that’s safe.
I think that it would be a great idea to actually compile a list of drugs with the potential for these types of symptoms directly onto this forum. I have not yet seen a single list that is fully comprehensive from my own experiences.
What do you think?
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
Response from bekac4d
There is an additional drug that I want to add to the list - that is the anti-seizure medication , Lamictal.
There have several reports of the drug inducing SEVERE dystonia. Be aware of the meds prescribed to you. Become an informed health consumer !
beka
Response from Ellen
Lexapro aka Escitalopram Oxalate also lists Dystonia and Dyskinesias as a side-effect seen post marketing. Lexapro is an SSRI (Selective Seratonin Reuptake Inhibitor). Most SSRI’s cause dystonic reactions in those that are susceptible to them, correct Beka?
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
Response from bekac4d
Hi Ellen -
Have heard of the SE re. Lexapro- but generally well tolerated by most people. I worry more about the drug CYMBALTA, used to treat depression.
Lexapro is a newer version of the drug called celexa , also used for depression.
beka
Response from Ellen
You have a real point there-- the advantages and disadvantages must be carefully weighed in all accounts. Because I react to so many meds, and I have met many others out there like me, my goal is to make sure that the potential for this type of reaction is made known to those most likely to have those reactions. Just because the potential is there, doesn't mean that any one individual will have a reaction.
They just need to be made aware of the possibilities.
Are there any others out there we should be aware of?
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
I am adding this link of a list of drugs that I compiled using the Physicians’ Desk Reference (the drug bible for docs and NPs - medicine is unsurvivable without it ! ) .
There is another drug that I now have to add to the list - that is LAMICTAL , which often is used for seizure control and in epilepsy. I have received some reports that it has lead to drastic effects in dystonia patients. Thus, please avoid it if possible.
Go to this link, scroll down to Avoidable Med List- and print it out ! Save it !
http://care4dystonia.org/index.php/our-publications/
beka
Response from Jen
Hi Beka and all,
Thanks so much for posting this. My dystonia was caused by Reglan and Compazine and I have met hundreds of people over the last 12 years of dealing with dystonia that also have drug-induced dystonia or similar movement disorders.
These medications can disable you for life and if you already have dystonia are very likely to make it worse.
-Jenelle
http://www.geocities.com/Petsburgh/6691/mystory.htm
http://neuronswithdystonia.blogspot.com
Response From Ellen
This is a great thread!
I am one of those that is affected by many meds out there, even those that are supposedly “safe” or even used to help TREAT a tardive reaction. (The med that got my generalized issues going full bore was Benadryl, a drug that many with generalized issues have problems with. See this link for more info on this type of reaction to Benadryl) Of course, now that I’ve ‘been there, done that’ the information is now coming to the surface that they are not as safe as once touted. Another one that I have trouble with is Zofran (Link takes you to the Mayo procedings about Zofran reactions) Getting the word out on these meds and having a good list is so very important. I wish I could count the number of times I’ve gotten “the look” when I tell a doc about all the meds I’ve had reactions to. When they contradict me and tell me that it’s not possible, I want to shake them. Docs think I’m crazy for refusing the meds when I’m in such terrible pain, and I’ve had to undergo very invasive bone surgery with only a local because they don’t know what else to give me that’s safe.
I think that it would be a great idea to actually compile a list of drugs with the potential for these types of symptoms directly onto this forum. I have not yet seen a single list that is fully comprehensive from my own experiences.
What do you think?
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
Response from bekac4d
There is an additional drug that I want to add to the list - that is the anti-seizure medication , Lamictal.
There have several reports of the drug inducing SEVERE dystonia. Be aware of the meds prescribed to you. Become an informed health consumer !
beka
Response from Ellen
Lexapro aka Escitalopram Oxalate also lists Dystonia and Dyskinesias as a side-effect seen post marketing. Lexapro is an SSRI (Selective Seratonin Reuptake Inhibitor). Most SSRI’s cause dystonic reactions in those that are susceptible to them, correct Beka?
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
Response from bekac4d
Hi Ellen -
Have heard of the SE re. Lexapro- but generally well tolerated by most people. I worry more about the drug CYMBALTA, used to treat depression.
Lexapro is a newer version of the drug called celexa , also used for depression.
beka
Response from Ellen
You have a real point there-- the advantages and disadvantages must be carefully weighed in all accounts. Because I react to so many meds, and I have met many others out there like me, my goal is to make sure that the potential for this type of reaction is made known to those most likely to have those reactions. Just because the potential is there, doesn't mean that any one individual will have a reaction.
They just need to be made aware of the possibilities.
Are there any others out there we should be aware of?
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
Tags: dystonia
Replies to This Discussion
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Permalink Reply by Jen on -
I recently had a dystonic storm associated with Lyrica. I actually had several dystonic attacks (smaller episodes) before the storm. It wasn't until the storm and having my breathing affected...a 911 call and ER visit that I realized it was the Lyrica. Just an FYI for others. I was trying it to treat fibromyalgia.
I also had similar problems recently with Ultram (tramadol) which is used to treat pain. I think the Ultram causes this because it has SSRI effects. I'm not sure why the Lyrica caused me so much trouble.
-Jen
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Permalink Reply by beka on -
Hi Jen -
how are you doing now ?
I have a few other meds to add - Albilify - used for Bipolar disease, now we have Lyricia, approved for fibromyalgia...
I have to wonder if these drugs attach to the wrong cell receptors , making them induce bad reactions in people with dystonia , whose neurons are already altered in someway ??
Something to think about ...
beka
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Permalink Reply by beka on
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Yes - the new drug on TV for schizophrenia - Alibify. Definitely causes tardive dyskinesias and forms of dystonia.
beka
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Permalink Reply by Ellen S on -
Hi Beka,
I just ran into a paper just out re: Aripiprazol and Tardive reactions. Please see the link for more information. I hope you can add this med to the list of avoidables.
Thanks!
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Permalink Reply by Rosemary on -
Hi: I noticed the comment above about Cymabalta, suggesting it can cause trouble for some people. I actually started taking it a few years ago, in part because it helps with pain as well as depression. I have to say it has helped me a tremendous amount. I was in very sad shape after failed surgeries, on top of Dystonia; it has made a huge and positive difference for me.
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Permalink Reply by beka on
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I have heard of reactions towards occuring when people try to come of the drug. The drug is now being looked at by the FDA.
beka
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Permalink Reply by beka on
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Please add 2 more drugs to the list :
Ciclizine
Mitripine
Almost all of the drugs ending with the letters "INE " can worsen dystonia in some patients, NOT all/
beka
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Permalink Reply by FelicityNexus on -
I hope i do not have a reaction to this medicine, i have been on it for maybe a year and now a month or two to double the dosage. So far i do not think i am having any side effects from it . Felicity Nexus
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Permalink Reply by sisdailey on -
Hello Beka:
I am so happy to see this thread. So many people are not aware of a list of these drugs that should be avoided.
I think this will be very helpful for so many who have dystonia. Thanks so much!
Sisdailey
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Permalink Reply by Connie on
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This feedback on medications is so helpful. Thank you all. I have 2 medical issues that I'm dealing with -- cervical dystonia and OCD. The OCD I've had for as long as I can remember (and both of my sons have Tourettes Syndrome with some accompanying anxiety and OCD tendencies). It seems to me that I developed dystonia 19 years ago after starting on Prozac for OCD (noticed symptoms after 4 months of being on 80 mg of Prozac). I was on no SSRI's for several years after that, but went back on in 2002, first Paxil, then Lexapro and finally Zoloft. Everything was fine for several years. Just over the past year, the dystonia has worsened. Was it the Zoloft? Or menopause and hormone changes, maybe? Or posture problems that worsened over the years of having dystonia -- last summer I couldn't lift my left arm up over my shoulder and my neck verbetra are crooked. Any feedback would be greatly appreciated.
Connie
P.S. Beka recommended this website. Thank you!
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Permalink Reply by lilly marie on -
connie, i am new to this site. i was doagnosed with dystonia about 4 years ago. altho all 5 neurologists say that my symptoms are not typical and that i am a mystery.
the only thing i have had adverse reaction to is botox. prior to the botox, my left hand had one simple problem...the little finger flxed outward. after botox the three fingers next to undex finger were clamped tight inside my palm. that was almost 2.5 years ago and my fingers are still messed up.
my dystonia affects my left side only. it first began withe the toes curling u nder, then my left little finger flexing outward then my left shoulder elevating itself. grrrrrrrrr
that is the extent of my symptoms so far. i am in pain in my left shoulder...great pain.
i am not sure where i should turn.
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Permalink Reply by Ellen S on
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Beka, I went to the printable list on C4D and didn't see some of the changes from this thread or the other reflected there. I'm getting ready to have it out with another doc. This sure would be helpful. Pretty pleeze? :)
Beka, the link for the Mayo proceedings on Zofran info seems to be missing in my original post somehow, so I'm presenting it again here : http://www.anesthesia-analgesia.org/cgi/content/full/96/5/1374 Although it is rare, the explanation toward the bottom describes the process. I am one who had a Zofran reaction post surgery. I hope you will consider adding it and the others mentioned in this thread to the C4D printout.
You're the best!
Ellen
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