I was a very healthy 38 year old woman raising 5 kids. I worked out 6 times a week, which included 25 miles of running a week, a few spin classes and some weight lifting. I handled a large job, and juggled everything fairly well. Thank God I had never really been sick. An occasional sinus infection and maybe a cold here and there, and slight excersize induced asthma. Although, that had never been a problem for me.
My family moved due to a job my husband had taken. When we moved I decided to take some time off, focus on my kids and really catch up with my doctors and make sure my health is in line. I went to my doctor for my asthma. He put me on some meds. They weren�t working well so I ended up in the ER on a weekend to be checked out. They gave me some steroids and sent me on to an ENT. I proceeded to go to the ENT and found out that my sinuses were a mess and I needed a ton of medication. At that point I had another steroid injection, prednisone, 2 steroid nasal medicines, an antibiotic, a daily medicine for my asthma, and an allergy medicine. Now being the woman that I am, I should have never taken this. I have never really taken medications. I had never had steroids, and maybe 2 antibiotics in the last 6 years. However, I guess I knew that he was the specialist and I should do this to clear everything up. At least everything he saw that was a problem. So I proceeded. While I was going thru all of this, I was discussing with my general practitioner, my migraines. I did get quite a few migraines, especially after I worked out. Now let me explain. I didn�t just work out. I took my body to the brink every work out, getting my heart rate to 180. Now looking back, maybe I should of toned that down, but of course I thought the harder you pushed, the more your body gained. So my doctor informed of the options of a daily migraine medication. There was this one, that has worked great for his patients. The only down side, was you could lose a lot of weight, and we would have to monitor it. Well, I said to myself, why not get rid of my migraines and lose weight. Perfect! The only thing I was told was how to ease into the medicine and not stop it cold turkey. Ok I can do that.
At this point, a couple weeks later, I had a cold and lost my voice. I also had a check up with my ENT. He saw me and told me that this infection is bad. I had an IV of antibiotics, another dose of injectable steroids, put back on prednisone, kept up with the nasal steroids and a daily antibiotic were added to my regiment. I took a few days off from work, due to my voice. All of a sudden within a few days I noticed I started to feel really terrible. I felt like I couldn�t breathe. One night my face started swelling, and I couldn�t breathe. We called an ambulance. My blood pressure was out of control and they took me in to the hospital. There they asked what meds I was on. I think at that point it was 9 different ones, not including the ambien they put on to sleep. At the emergency room, they gave me an injection of prednisone and a breathing treatment with epinephrine for my throat. They ran some tests and told me I could talk, so I could breathe and sent me home. What did I know they are the ER docs, they would never send someone home, if they were in danger. And they know so much since they are doctors. So why couldn�t I breathe? I guess it was in my head. I went home that night and laid on my couch for the next 2 days, TERRIFIED, trying to figure out why I couldn�t swallow and it was so hard to breathe. I couldn�t get up. I couldn�t move. I called my ENT and told them I still couldn�t breathe. They didn�t know. They said to try to stop the antibiotic and go cold turkey on the prednisone. And to take Benadryl around the clock and see if that helps. Well I waited, still not being to move to the next day. My husband called them back and they said they didn�t know. It must be something else aggravating my system. When my husband came home, I couldn�t breathe or move. I went back to the ER. They told me my throat isn�t closing, so I need to wait for a bed. When I finally got in, the doctor told me they had seen me before, and they found nothing wrong with me. Funny, I couldn�t swallow with any ease, I stopped eating due to that, I felt like I could barely breathe and I was suppose to be fine. When asked if there were any new medicines, I went thru them all again. I mean how old were they? I had just been put on them over the last 6 weeks. I told him about the topomax, the migraine medicine and he looked it up and his blackberry, and shrugged and said �no�. He then proceeded to ask me what I think they should do with me, and then walked away. At that time, my husband called my ENT back and told them I was back in the hospital. My ENT called the ER doctor and told him to have me stay the night. They were going to run some tests.
So I stayed and still continued to suffer. My mouth and face were so swollen and they just kept adding more steroids and injected me with more medicine. I got to the point where I couldn�t sit or stand up and be able to breathe. It was so hard to lift my head. But when they did the asthma test, they said my lungs were clear, so I could breathe. No problem. I just wish my body would register that there was nothing wrong with me. So I decided to tell the doctor I didn�t want anymore steroids. He agreed. Even though the nurses kept bringing them again and again, against his orders. I just kept refusing the treatment. Its as if they didn�t care what his orders were. I had chest pains, they ran an EKG and it was fine. They ran catscans and I was fine. I felt that I was dying. But according to them I was fine and so I could go home. At this point I left the hospital with less medication. Only allergy med, asthma med, acid reflux med(oh did I tell you that they thought maybe it was acid reflux), topomax and ambien.
We got me home. I was ok unless I had to lift my head or stand. It was excrutiating to go to the bathroom or to shower. The fear was overwhelming. When I would be in the shower, I felt like I would need to call 911, because I didn�t know if I would stop breathing, or have a heart attack. I laid there, with my cell phone in hand for 5 weeks, slowly going down hill. I got to the point where I couldn�t get out of bed. I was so depressed and somewhat suicidal. I mean how was I going to live like this? My kids would walk in and out of my room, but I couldn�t affect their lives. I couldn�t even walk downstairs and pay the pizza guy. My kids had to handle all of it. When I needed water or food, they brought it to me. I started to think it was allergies so I started eliminating certain items. We somehow thought it could be corn, so we went on a straight no corn diet. I mean down to the shampoo and toothpaste. It seemed to take an edge off, but I was still just laying in bed day to day. For the first time in my life, being the avid runner and mother that I was, I felt like I was dying. I really didn�t question it, so it was time. I wrote letters to my children and discussed it with my husband. There was no doctor that could help me, and my body was perishing. By that point I could not breathe, the sinuses and drainage were unbeareable, I had dry mouth, heart palpitation, anxiety, depression, tingles in my hands and feet, mucscle twitches, sick to my stomach every time I woke up in the morning, a constant ball in my throat, sleeplessness, itching, my head was in a constant fog, I couldn�t remember certain things, and my eye started hurting which I found out Topomax could cause glaucoma. I couldn�t even take a nap because my heart would race so much that my breathing would become so labored. Therefore I had to take ambien at night so I could fall asleep. By the way did I tell you, that I lost my job. I couldn�t take it, so I decided if I was going to die, I was going to try anything first. And at that point I pulled myself off two of my medications. By the next day, I had some relief in my breathing. Enough relief to be able to get out of bed and go to my ENT for my check up. Of course he looked at me and said I looked good. HOW??? How is that possible? He did want to inject me steroids for my sinuses though. I refused, I needed an answer to all of this before I had any more steroids put into my body. Why don�t I feel at all like me? Where did I go? Why do I walk around attached to my epipen and inhaler for dear life? Why am I petrified to be left home alone with my children, for if I need to go to the ER? Or if I stop breathing. Why could I barely drive a car, because I had to concentrate so much to drive. I felt like I wasn�t even sitting in my car. And now I am suppose to take more steroids without even answers to any of these questions. NO NO NO! I left and scheduled an appointment with my general practitioner. I knew that he was not a strong advocate of not a lot of medication, so I would go to him. I walked in and they weighed me. I had lost 17 pounds in 4 weeks and my blood pressure was 150/90. Needless to say I always ran 110/60. I told him I keep waking up sick to my stomach. He told me at that point I needed to be pulled off the topomax. THE TOPOMAX? Why? I was ok with it though, because I wanted to be off everything, and then I could see what my body was doing. He agreed. He felt that we couldn�t judge anything when are 10 different medications going on. I asked about the topomax. He said it can cause nausea, and he had told me about the possible weight loss. Didn�t mention if that was the reason for my high blood pressure or not. He had just told me that the drug company was trying to get it to pass for a weight loss drug, but the FDA didn�t approve it. That was not worth the weight loss. I can�t express that enough. I needed to taper off the drug. He first said lets taper for 3 weeks, but then just thought I needed to get off of it, so we did it the withdrawal in two weeks. He thought it should be no big deal. HA! I don�t think he had read up on topomax. Anyways I went home and started tapering. Immediately my eye started hurting. As well, I started to research the topomax. All of my symptoms were listed. Peoples stories were horrific. Well it says that if you have any eye pain, you should immediately contact your doctor and be taken off of the topomax. Eye pain should go away with going off of the medication. However it does cause blurred vision, double vision, vision loss and potential blindness. I called him and he thought I should go back up to the original dose. My husband and I discussed it and there was no way I was staying on this toxic stuff. I stayed with it and within a couple days of the new lower dose, my eye pain started to diminish. Needless to say the lower of doses was twice as miserable as everything I had been through. I felt like I needed to commit suicide twice. If I had not educated myself to the drug, I don�t know what would of happened. I knew it was the drug, but I was so tired of the physical pain and mental depression. But that would pass as my body would get use to the new dose. As I got use to it, it was time to lower it again. This time it created me to absolutely struggle with my breathing, and the depression got a lot worse. It took a lot longer to get use to the new dose. I called my doctor back. I was having terrible heart palpitations. Now he told that also could be a side effect. Maybe it would have been nice to know all of this before I started the medication. I think I couldn�t move or function for 4 days. I would just lay in bed and pray that God would take me. It was too much. I couldn�t take anymore. I needed to be in a place of peace. But what got to me everytime�my kids. They kept me fighting. How would they grow up without me? They were already so heavily affected, but losing me? So I endured. And I finally made the last drop. The first two days were good. The fog had lifted and I had a little energy. But then it hit. I couldn�t breathe, couldn�t get off the couch, couldn�t eat. I thought my chest was crushing and I didn�t want to go on anymore. Would this ever go away? I didn�t know.
Well its been two weeks since that day. Do I know if it will ever all go away? I don�t know, but I am functioning. My heart palpatations are gone, the depression is leaving, the anxiety is almost gone, my sinuses are improving and so is my throat. My eye pain is gone, with my vision a little at a loss, my breathing is very slowly improving. But I had a day a few days ago where I didnt even think about my breathing. I still can�t nap and can�t sleep without ambient. But I can take my kids to school and make them cookies. But the improvement is slow. When I asked my doctor how long the side effects will last�.I learned than that it can take up to 3 weeks for them to go away. So basically between actual withdrawal and the systems to cease, it is 5 to 6 weeks. Did anyone tell me to get off a bad medication would take 6 weeks?
But what about the emotional side effects? I will never be able to raise my heart rate high again. That includes running and cycling. It terrifies me. I live with a fear that is unexplainable. My 9 year old worries that she is having chest pain. My 11 year old doesn�t want to go to school anymore. He has withdrawn from the kids at school. My 8 year old got sick and complained of chest pain for a week. I finally had to tell him I would be ok and he can go back. My daughters grades plummeted and told her friends that she thought her mom was going to die. I thought I was going to die.
And how did this happen? And here is my point for my long drawn out story I am writing. I was in the hospital 3 times. Not once, did a doctor bother to pull up my medications and look at the side effects. If they did, they would have known that everything I was feeling could have been attributed to the topomax. Why? They just wanted to tell me my throat wasn�t closed, it was in my head or maybe acid reflux and to go home. Did they think by telling me that, the pain would go away? If I wasn�t strong enough I would have ended my own life. How many others have ended their lives due to this medication ? With their doctor to busy and too booked to look at what was happening to the patient. Is it just easier to tell them its in their head and move on, so they can make more money on the next patient. What if I wasn�t strong enough? What would of happened to my five kids? What if the high blood pressure that they let go gave me a stroke? What if the heart palpatations and anxiety grew too much for my heart? What would of happened to my five kids?
The doctors today dispense and dispense. Why to make the next co pay? Is there a kickback if they sell a particular drug? Don�t they have a responsibility if they are recommending such a strong drug, to follow up with you. To ask what side effects you are having? What about when you end up in the emergency room? Isn�t it time for them to come by and look and see what is going on? How can my ENT put me so much medication, knowing what my primary put me on, and then have the doctors in the hospital look at it and still dispense more. Maybe it was too much. And I guess since they didn�t want to bother they just sent me home because my throat wasnt closed and nothing said cancer. Other things kill besides an anaphalactic attack and cancer.
I was 38, no medications before, an extremely healthy and lively person, and before I knew it I was on 10 different meds and I don�t even know how many injections of predisone. I loved and treasured life and my children. And then it was gone. All of it. And I just wanted the pain to end. No one, not one doctor looked at it all and wondered if all of this stuff could be creating these reactions. Who then is responsible? Why have a prescription pad, when we can get it so easy? Why have a doctor? Where is the responsibility? I have taught my kids to respect doctors because they have worked so hard and diligently to get where they are. They save our lives. They are suppose to know what is wrong with us. If we value and treasure them so much, and they take on this responsibility, then they owe us the responsibility of knowing what they are dispensing and making sure their patients are doing ok. But that is not how it is anymore. We have to defend and protect ourselves. We don�t have our doctors in our corner like it use to be. It almost seems like doctors don�t view us as people, or parents, wives, husbands, mothers and fathers who could die. I don�t know how they view us, but it feels like if it is not an easy fix, then they have to move on to the next patient. So where is responsibility? Are we no longer responsible for each other? Do we no longer care if one another is hurting? What about mankind? We are humans and our nature is protect ourselves as well as each other. Love one another as you love yourself. Or is it all now about the pocketbook? Or have we become so cold that loving one another is no longer able to be felt?
I guess I am writing this to try to reach out to people and warn them. Know that your doctors don�t know everything. They tend to dispense medicine easily, be aware of that. Don�t assume that all of your doctors are communicating to each other about your medications. And when you go in for a simple situation, and you are healthy, your life could go upside down if you are not your own advocate, just because the doctor may think these drugs may help you. You may not really need them. And then if there is a problem they just treat with more and more medicine. Its becomes a big circle which you cannot get out of. Remember the body can fight off certain things. We are made to do that. There is a time for medicine. And there also things we can do naturally to help. I cut out the diet coke and cut back the caffeine to try to help reduce the migraines.
But if I can let one person know what happened to me, and they change their course of action, then maybe they won�t lose months of their life. Maybe they wont be left with such scars. Maybe one person will read this and not take their life, because they now know it�s the medicine. And know that when you enter that emergency room, you need to have an advocate there for you. A friend or a relative. Someone that will get their attention. My mom went into a coma from a surgery. The doctors had no answers or reasons. We(her children) became her advocate. Because of that they brought the best doctors in. We had daily meetings scheduled with the doctors. We were not quiet. My mom is alive and healthy. What would they of done if we did nothing?
Please watch what you take. Don�t take anything that you don�t feel is necessary. Be your own advocate. You know what is right because it is your own body. Research all that you can. No one is going to do the research and send it to you. The drug companies aren�t going to call you and tell you what can happen, and either are most of the doctors. Check it out on the internet before you take anything. There are some answers there. At least you can become aware. Hold these doctors accountable for what they are doing. These are our lives they handle everyday. It deserves more than a minute.
I hope someone hears this. Pass this along and maybe we can help someone. Who knows maybe we can get enough attention that just one doctor may treat a patient differently and help them.
Thank you for taking the time to read my story and I hope this helps someone.
