Saturday, November 17, 2012

11/17/12
   Hi all! I have never attempted a blog prior to this. I am writing this in hopes that I can help somebody, or several somebodies, who are dealing with the same issue I have.
    Since 2005, I have had occasional bouts of dizziness, that i thought was vertigo. They would present by making me dizzy and nauseated whenever I would raise my head. While my head was down, I would feel ok. Normally, these bouts would last 2 to 2.5 days, then resolve. I had 2 bouts in December of 2005. I did not have another bout until August of 2011, then August 2012. The last one was September of 2012. I tried Meclizine 25 mg, since it is found over the counter now. Unless it was very mild, Meclizine would not touch it. Being an RN, practicing in Oncology, I had, what I thought, was a better idea.
     In September, when I had my latest bout, I called my doctors office, and asked if I could have a prescription for Scopolamine 1.5 mg patches. I knew that many people used them for motion sickness. (I even have motion sickness at times, but more so while growing up.) My doctor did give me a prescription for the patches. With medication patches of any type, it usually takes 4-8 hours before they start working. About 5 or 6 hours after placing a patch behind my ear, which is where one places a Scopolamine patch, it worked.
      Now, since I placed the patch at the end of the second day of the attack, I was not sure if the patch was working, or if my dizziness was naturally waning. Scopolamine patches are normally worn for 72 hours. So, after 3 days, I took off the patch. I was fine until about 12 to 14 hours later. I started to get nauseated. I figured that my "vertigo" was still affecting me, and since the patch is time released, the medication was still on board for 12 hours (which is a correct assumption). Initially I was not too bad, so I thought I would just ride it out. Later, I got more nauseated, and dizziness started, and I started vomiting. So I placed another patch, and I took a Meclizine pill to try to take the edge off the nausea and dizziness while I waited for the Scopolamine to kick in. Later, the medication started to do the job, because I was no longer dizzy or nauseated.
     Here is the punchline: Every time I took off a Scopolamine patch, I would get the same symptoms, and place a new patch. Now 1.5 months passed. I thought that I was having the longest bout of vertigo that I had ever had. I called to make an appointment to see the nurse practitioner to see what to do about this. (My doctor was booked. Luckily I am a patient at a very large clinic that has over 300 MDs and many middle level providers, It is also attached to the hospital where I work.) When I saw the nurse practitioner, she referred me to the clinic's "dizzy clinic". (FYI, I have worked and been a patient at this place for 24 years. I had never heard of the "dizzy clinic". It is located in the Ear, Nose and Throat clinic. Dizziness normally involves ears.)
      I filled out a 6 page history form, then the Audiologist called me to set up an appointment. She said that, for 48 hours prior to the test, I had to be off any medication that had an antiemetic affect. My appointment was at 8am on 11/1/12. So, at 8am on 11/30/12, I apprehensively took off the Scopolamine patch. I took a last Meclizine to keep me from being symptomatic a little longer. At about 9 pm that night, I started getting a little nauseated. I figured I would go to sleep, and by morning I would be fine.
     I woke up with severe nausea at 3:30 am. Even when my head was flat I was nauseated. I was not dizzy though when my head was down, only when it was raised. I fell back to sleep, and dreamed of nausea, it felt so bad. I woke up at 5:30 am, started vomiting. Whenever I vomited, I felt better for a while, and thought that would be the end. It was not. I was only dizzy if my head was raised. But I was nauseated no matter what. Right before the third time I vomited, I was so dizzy, I felt like I would faint. After I vomited the third time, I called the clinic and said I had to place another patch, and take some Meclizine to take the edge off, or I would not be able to do anything the next day. It took 4 or 5 hours for the patch to kick in. I was so nauseated, just thinking of drinking something would make me vomit. I also had a severe headache. The next day, I got on the scale, and I found I had lost 2 pounds the day prior. I cannot remember the last time I had such a physically horrible day. And even though I was much better that morning, I did not get back to my normal for 2 to 3 days. Thank goodness, I have the best husband in the world. If not for him, this all would have been much worse. The audiologist tested me. Then I made an appointment for the next week with the ENT MD.
     Meanwhile, I had mentioned what happened to my 2 closest friends. One of my friend is an Engineering professor, and she started looking up Scopolamine on the internet. She emailed me a blog that she had found. When I read it, it sounded just like me, except she had been wearing continuous Scop patches for 1.5 years, rather than 1.5 months. The writer mentioned that it was Scopolamine withdrawal. I looked on the internet, and found even more, worse cases of withdrawal, as my friend told me that she had also found. I had never heard of it. Even reading the package insert, it said that one may have some symptoms of withdrawal if using more than 72 hours. I only had it on initially for 72 hours. That is all it said. And all of the entries that I read talked of their doctors blowing off the idea of withdrawal.
      By the time I saw the ENT MD, I knew I wanted to have some strong antiemetics, so I could get off the patch. Being an Oncology nurse, I had some medications in mind. As it turned out, my dizziness was not vertigo. Vertigo is spinning, and my dizziness is lightheadedness. The ENT MD said that it is probably either Neurology or Cardiology, and said he would make recommendations in his notes, but I should contact my primary care MD. Also, since he did not prescribe the patches, and the dizziness was not caused by something that was in his specialty, he was hesitant to do anything with the Scopolamine.
   So, I mad an appointment with my primary MD. I saw her 3 days ago. (FYI: I had had a physical 9/11/12, which was about 2 days prior to the beginning of the last bout of dizziness. My bp at the time was 122/68. That is smack dab in the middle of my normal bp range. In the ENT's office, and in my primary MD's office, my bp was 158/80. I have never in my life been hypertensive.) I brought print outs of people's entries from the web, and told her my story. I have a wonderful doctor. I have had her for almost 25 years. She has always listened to me. This last appointment was no exception. I told her that I thought I would have a better shot of preempting withdrawal symptoms, if I had good antiemetics and pain medication for the headache. She agreed. Together we figured out the plan.
      Here is why I am writing this blog. Today is Saturday. I work 2 nights per week. I work tomorrow night, and do not work again until Thursday night. Since it takes about 12 hours to become symptomatic after the patch comes off, I am planning to take the patch off at midnight tomorrow night, while I am at work. (I have nothing else scheduled during the time period I have said, until Thursday afternoon, when we go to a friend's house for Thanksgiving.) I plan to take Onadosterone (Zofran) ODT 4 mg and Meclizine 25 mg at about 8 am, since neither of those will make me drowsy. I have to stay over for about an hour after work to do a small project I do about every 6 weeks. When I get home, about 10 am, I plan to take Hydroxyzine (Vistaril) 25 mg and, to prevent the horrible headache, I will take Gabapentin (Neurontin) 300 mg and Ibuprofen 400 mg. This is the regimen that my doctor and I chose. I can take more doses as needed. I will be blogging, if I am not feeling miserable. If I do feel miserable, I will blog after the ordeal is done.
Wish me and my husband good luck. (I almost forgot to credit my dog. My dog always laid right next to me when I was feeling miserable. Not only has my husband been a life saver, so has my dog.)
      11/18/12
    I will be taking off my Scopolamine patch at midnight tonight. The worst story that I have seen on the web was a man that wrote about his wife. She had a tendency to get seasick on cruises. She wore Scopolamine for her 7 day cruise. When she took it off, she was nauseated, vomiting, dizzy and had a severe headache for a week. (This was written in 2008.) At the time of his writing, his wife was not the same. She was disability, and could not work. That is scary.
   11/20/12
    I screwed up. In the 2 months that I wore Scopolamine patches, I found that their potency lasts for 96 hours, 4 days, rather than just 3 days. But this last Scopolamine patch that I wore, I stretched to 4.5 days. It turned out that it must have lost its potency on Sunday morning. By 5:30 pm, I started to feel a little dizzy and nauseated. I was about to eat supper before going to work. Normally my husband and I eat together, but he was finished staining wood trim for the carpenters to put up in the kitchen and utility room. (We are having those rooms remodeled.) I too Meclizine 25 mg, Zofran 4 mg, and Ibuprofen 400 mg. I ate a little dinner, and hoped that the medication would prevent nausea and severe headache.
       I was a little dizzy when I got to work, but I was not nauseated or did I have a headache. I was the charge nurse. I got charge report and made assignments. I was light headed and on the verge of nausea, but I was ok. I made first rounds on my patients. (Thank goodness I only had 3 patients.) I figured that I would take more medication at 9 pm. (I had taken Zofran, Meclizine and Ibuprofen with me. I did not take the Vistaril or Neurontin, because I was not sure whether they would make me drowsy.)
       The best laid plans. At 9 pm, one of my patients had an IV site that went bad. I restarted it, changed tubing, put her on the bedpan, and walked out of the room. When I got out to the nurses' statione, I grabbed a garbage can and went to the bathroom. I told the 2 other nurses I was working with, to watch for my patient on the bedpan, I have to vomit. I made it to the bathroom, but I did not get in front of the garbage can in time. I had to call housekeeping to mop the bathroom floor.
      I took more medication and was hoping that it would all start working, and prevent any more symptoms. Meanwhile, the other 2 nurses I was working with gave me quizzical looks. I went into the planning room, to the one computer that can get on the internet, and showed them the blog.
      I was getting ready to make vitals rounds on the last of my 3 patients, and give him his meds, etc. I was then overtaken by another bout of nausea. My coworkers took over. They said that they would do that for me. I ran to the bathroom and vomited again. This time I made it to the garbage can.
       By this time, I knew that I could not work anymore tonight. I called the house officer, and luckily she had nurses that were home on standby, from other units. Meanwhile, I gave the charge phone to the other charge nurse that I was working with. Then the house officer called back to say someone would be in soon. She also asked me the type of illness I had. I gave her the URL to this blog. At that point, the stat nurse came to help. (The stat nurses float the house, doing hard IV starts, helping with codes, etc.) She asked what was going on. At that moment I again had to leave to vomit. When I came back, I brought up this blog. I ran out to vomit a 4th time. Then I gave a quick report, and headed to the Emergency Room for IV fluids.
      It is now after midnight. I took the stairs down, because I thought I would get nauseated taking the elevator. The Emergency Room secretary asked what was the problem. I told him, Scopolamine withdrawal. When I was triaged, my blood pressure was 176/102. When the triage nurse asked why I was there, I gave her the URL to the blog, so I would not have to explain everything.
      The nurse was going to give me a Zofran ODT. I said that I had some on me, so I would take my own, and save money. They did not order blood work, only an EKG, which was normal. The resident asked why I was in the ED, I told her the URL to the blog. (It was easier to have them read this, than to explain everything.) They gave me a liter bolus of IV saline. I was feeling better at this time. While the saline was infusing, the nurse asked me if I needed a dose of IV Zofran. I said no. She left the room for a few minutes. That is when everything changed.
     I started getting a little dizzy and nauseated, so I asked if the IV Zofran was still available. She said yes, and went to get it. I was just a little dizzy and nauseated at this point. So I thought that I could drive home. It was now about 2 am. She came back with the IV Zofran. She DC'd my IV. Then she went to get the paperwork.
       While she was gone, I started feeling really dizzy and nauseated. I grabbed the basin and ran to the bathroom. I did not vomit, but wished I had. Because after I vomit, I temporarily feel good. When she came back, I told her I now felt terrible. She asked if I wanted to call my husband for a ride. If so she could give me some IM Phenergan. (Phenergan has a tendency to make one drowsy.)
    I had hesitated calling my husband, because I knew how exhausted he was. But by 3 am, I called him. The nurse gave me the Phenergan. By this time, I could hardly keep my head up without getting dizzy. My husband came. The nurse in the ED was great. But I was still feeling miserable. So, I asked the resident if I could be admitted as an observation patient for IV fluids and IV antiemetics. She said she'd have to ask the attending.
         When she came back, she said that I did not fit into the parameters to be admitted, because this is a chronic problem. Chronic problem? She said that it is chronic because I had been going through this for 2 months. I told her that I had been wearing the Scopolamine for 2 months, but I had not been going through withdrawal for 2 months. She said that the treatment for Scopolamine withdrawal is to put on another Scopolamine patch. WAS SHE KIDDING???? (So, if a heroine addict was going through withdrawal, the treatment is to give him/her more heroine?)
     My husband drove me home in my van, rather than his truck, so I could lie down. I went home with the basin. Good thing! As soon as I got in the door, I ran to the bathroom, and vomited in the basin. (My poor dog did not understand what I was doing, instead of greeting him.)I did not make it to sitting down on the toilet though, and the pressure from vomiting makes me urinate. I vomited one more time. During the short window that I feel better after vomiting, I took a bath. Then I took Vistaril, Benadryl, and Neurontin.
       It was now 5:30 am. My husband, my dog and I went to sleep. That day was a blur. I slept through most of it. When I was awake, I would push myself to drink. If I was slightly nauseated or had the beginnings of a headache, I would take something.
     Today, I started out lethargic, but got better as the day went on. I ate some chicken soup, that a friend had brought for me, for lunch. That was the first thing I ate in 2 days. I lost 2.5 pounds. I was still taking medication today, but little by little I felt better.
        I am still a little woozy and nauseated, but I am so much better than I was.
    I have some other things I want to include. There are more side effects than you know. I have at times been known to be a little itchy. But for several weeks, I have been so itchy, all over, I have been scratching constantly. So much so, when I would look in the mirror at my naked body, it looked like I had had a fight with an angry cat. Since I have gone through withdrawals, I have not been itchy hardly at all. Also, my blood pressure went up. Not to mention the dry mouth that is a known side effect.
     I also want to say that there are heroes I want to talk about. I want to thank my doctor for working with me. As bad as this was, it would have been worse without her. My husband and dog havde both been wonderful. My 2 coworkers, who picked up the slack. Then house officer, the stat nurse, and the nurse that was called in, and my nurse in the ED. And my 2 best friends, one of whom found out about Scopolamine withdrawal, the other who mad made me soup. Thank-you all!
11/22/12
     I have an addendum. I want you to know what worked for me, and what did not work. The severe headache was prevented well by rotating Gabapentin 300 mg (Neurontin), Ibuprofen 400 mg, and Acetaminophen 500 mg (Tylenol). I took Ibuprofen when this all started to prevent a headache. Whenever I felt a very tiny headache coming on, I would take one of these medications. I rotated them. It worked great.
     As far as the dizziness and nausea go, that is another subject. I was better yesterday, and I am even better today, but I am still a little nauseated and or dizzy at times. When I left the ER the first night, I had had 50 mg of Meclizine,16 mg of Zofran and 25 mg of Phenergan total, in less than 12 hours. That is more antiemetic medication than many of my chemotherapy patients receive for premeds. I was still dizzy and nauseated when I had my head up. Don't get me wrong. The day I had to be off antiemetics prior to seeing the audiologist, I was nauseated no matter what. With antiemetic therapy, I was not dizzy and nauseated if my head was down. The combo of Vistaril 25 mg, Zofran 4 mg, and Meclizine 25 mg did not seem to help control the nausea. But I was not nauseated lying down. The same for the dizziness. If I had not taken antiemetics, I would have been nauseated no matter what, so they helped me lie down, and be comfortable.
        The best thing for dizziness and nausea was to have my head down flat. Also, if I had to be up, if I bowed my head, I was better.
     I have lost another half pound, but I am doing so much better. Today is Thanksgiving. I plan to thank G-d for allowing me to get off the Scopolamine. (I am Jewish, and we are not supposed to write the whole name of G-d. So that is how we write it.) My husband, dog and I will be at a friend's house this afternoon. I work tonight. I think that I will be ok at work. I inadvertently still have nausea standing upright, but it is better. As long as the nausea is kept at bay, I should be fine at work. I hope that anybody reading this is, or has had, a good Thanksgiving.