Scopolamine Withdrawal Syndrome, extended use warnings and study needed
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I am starting this petition in the hopes of enacting change in the labeling, use and warnings associated with the long term use of Transderm Scop and any form of scopolamine and the need for further medical research into Scopolamine Withdrawal Syndrome and use of Transderm Scopolamine longer than the recommended 72 hrs. Please see the brief story of our personal experience below and following a link to a medical journal from last year supporting our experience and another blog also supporting a similar story. Webmd has over 100 consumer reviews many which support similar reactions after extended exposure. Please sign this petition so the FDA at least has to start an investigation. Please help me help another family from going through this tremendously difficult and dangerous journey. No harm can come from further knowledge and education, that is all I want. Sign and share!!
I am writing to get help for my Husband, David Maeder. He was first prescribed the Transderm Scop patch in June of 2014, and was continuously prescribed this medication until Dr. Judith White at the Swedish Balance Institute recommended that we remove this patch and that it could be harmful and be effecting my husband's health. So in order to see her it was removed on May 16th, 2016. Dave was prescribed the patch 3 months post interparachimal hemmoraghe of his cerebellum for severe nausea. About 6 weeks after first being prescribed the scopolamine patch we reported a change in Dave's overall mobility and health status. Urged by his physical therapy team, we advised his pcp at the time that his balance had significantly worsened, his dizziness and vertigo were much worse, his double vision way more unstable and his nausea had returned,he could barely get out of bed. He was sent for an MRI for fear of a new hemorrhage, but MRI was consistent with where he should be post initial injury and we were advised that set backs were common post stroke and to keep working with his therapists and at home.
Dave continued to work hard at therapy when he was able, yet continued to suffer everyday from debilitating nausea, double vision, vertigo, dizziness, anxiety, depression, itching and this feeling of his brain being sucked out of the back of his head, sleeping all the time, everyday was different and unpredictable. We relocated to Seattle from Texas and took Dave to Swedish and asked for a second opinion of Dave's overall case. The scopolamine patch was continued when we moved there, but it was stopped abruptly due to insurance approval and he got even worse, horribly ill. All of his symptoms suddenly so severe he was bed ridden for days, so the patch was put back in place per his doctors as being effective. We now believe he was suffering from scopolamine withdrawal syndrome. We continued to voice our concerns as to Dave's overall quality of life and frustration of finding any relief from just one of his symptoms again and again to his care team. Physical therapy was not helping, he plateaued at using a large staff if and when he got out, but always a huge fall risk with multiple falls every week. He had stitches after a fall last summer. Nothing helped, no one had any ideas, I was referred to Dr. White by a client after sharing our story.
When calling Dr. Whites office to arrange an evaluation I advised my concern after receiving the paperwork and finding out Dave had to remove the patch as he was always horribly ill due to the withdrawal syndrome, still at the time we were not aware of this. Her nurse advised us that no evaluation could be done if Dave was on that med as it dramatically effects their testing and that it was very unusual for a patient to be on this medicine for this amount of time continuously. We weened him off as per the same instructions as a failed attempt to take him off only once before, but was unsuccessful due to severe withdrawal symptoms, and we used zofran and reglan to help with the nausea, I took time off from work to make sure I could help him and we did it. We saw her and she cautioned us about the scopolamine and known side effects and thought that it could be influencing Dave's health in a negative way. She did all her tests and Dave failed terribly, but she could not find anything neurological that she could do, but wanted a follow up c.t. scan for a possible anomaly in his left ear. We left with the promise to follow up and went home.
Dave went straight down hill and had about 2 weeks of severe withdrawal syndrome. He was up all night, raging, cursing, put a whole in the wall, he was paranoid and delusional and manic. I was calling his pcp office and getting no help. I called at my whits end the Saturday after we saw Dr White and spoke to the doctor on call. She was going to call his pcp and Neuro doc and get back to me with a plan, but she never did. I was about to have him committed when we had a huge blow up and he started to come around. He started to talk to me and tell me how confused he had been. Then he said he had something exciting to show me. We were walking to get our kids from the school bus. He handed me his walking staff and just started walking, I ran after not wanting him to fall knowing a step was coming and he just stepped off and then turned in a circle like it was the easiest thing in the world. You have no idea, this man vomited almost everyday for 2 years, he could not take more than a few steps unassisted, he could not tilt his head or turn in any way side to side without debilitating vertigo. He was home bound, unable to drive due to the severity of his double vision and overall medical status, advised not to leave the house with out someone because he was a fall risk. He was unable to get out of bed for days at a time. I started crying and asked how is this possible!!
It has been 4 months since Dave stopped the prescribed transderm scop patch. He now drives as his double vision straight on is almost gone, he does not use any assistance when walking, he has no more nausea unless flare ups of his scopolamine withdrawal syndrome appear. We followed up with Dr. White, last time Dave was there he had one of the longest recorded episodes of vertigo they had seen, 4 weeks later, she could not induce vertigo. She said she knew the scopolomine was having an effect but the change was amazing!! He is able to do almost anything he wants, it is fabulous. The change in his daily life, our children everything is so much better. He is able to partake in life in a way he has been unable to in so long. It is wonderful and amazing! In the same breath, there are some problems as well and this is where we are having an issue.
Dave is still suffering what we believe to be adverse reactions to the long term scopolamine prescription. We have spoke to his new doctors and so far no one has any help or advice as no one has any experience with this. He is having clammy hands and feet, periods of extreme anxiety exactly like when he withdrew from the scopolamine initially. Confusion, paranoia, excessive sleeping all signs of scopolamine withdrawal syndrome. We have been told we are in uncharted waters as typically this is a 3 day recommended use drug. There is some research out there, but for some reason a lot of doctors don't want to talk about this or the possibilities that scopolamine withdrawal syndrome is real and debilitating and research needs to be done. We are concerned he has several things that we feel need to be followed and a baseline established, but no one believes us and we don't want to return to the doctors that were prescribing it. We have a great new pcp through the university of Washington, but she is not a brain doctor and can only help us so much. He is seeing a new neurologist with UW who ordered a new MRI and wants me to keep a journal of these symptoms post scopolomine. There are no case studies for long term use, he is patient 0. His recovery in just weeks was miraculous after how hard he worked with amazing physical therapists for a year with almost no progress. We did everything the doctors asked, we were well liked as we try to be as positive as we can. This adverse reaction to the scopolamine and the scopolamine withdrawal syndrome is real and it was missed and I know with everything I am that drug was not helping my Husband and was keeping him sick and from addressing his real post stroke recovery.
It's now been a year since I started this petition. Through my efforts I have located 4 other people who are in the same position as Dave. He went through a second longer more severe withdrawal a year after his initial withdrawal. He developed a severe case of dermatitis all over his body especially his arms and legs which is an allergic reaction. The episodic events became unpredictable and every few days for 4 months. The episodes now start with itching, then nausea and abdominal cramps, paranoia and anxiety, then sleeping. He doesn't form memories during these times and often doesn't remember the specific events that happened. His short term memory continues to be a huge factor. Still trying to find a doctor that actually wants to find answers and not just mask symptoms with meds.
I just want someone to hear us. It is about finding answers and help for my husband's future health and people being aware of these side effects. I have found other stories of people suffering the same after using the medication for just a few weeks or even days and he was on it for 2 years. Doctors that have knowledge of it know the dangers, but too many don't. People complaining about this drug on med watch and no one is doing any research and it has been around forever. I know that we are not alone and I have no idea how to get the word out and try to enact some change and to find help for our family. Thank you and please consider looking into our case.
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