Do we even know where reality and/or fantasy draw the line? The past 6 weeks have been very much a learning experience for me. At 46, I continue to wonder how much more out there is left for a person in a lifetime to experience, yet just when I think all to do has been done, something else is around the corner, and again I spin into another realm of life. I began with a new medication for migraines about 3 weeks ago. It is not the "usual" type of pain medication, or Imitrex type medications that anyone with migraines knows about that keep the blood vessels of the brain from causing the spasms that the doctors feel ultimately lead to the horrible almost unbearable non-relenting pain of a migraine headache. If you have never experienced one, then you just cannot imagine what the type of horrible pain, the nausea, and all of the discomfort that goes along with this type of headache is. For all of my adult life since 17 I have had to endure these types of headaches along with all of the course of every type of diagnostic tool, plus every type of "new" treatment that was supposed to be the End All and The Cure All to the Migraine Sufferers of the World...and of course us with the migraines know most of those cures just did not do the trick. We still spend endless days and nights begging, pleading, and promising our lives just to not live through one more moment of the nightmare of pain...yet we know again, may it be a day, an hour, or a month, we will once again live through the horrendous nightmare again, and probably if we half to make a trip to the local ER or our own doctor, we will be treated like some "drug addict" that is just looking for some kind of "quick high" which is just so damned far from the truth...all we want to have IS NO PAIN!!!!
Well, now comes along another "miracle answer"., Topamax.. which is another anti-seizure medication but does work differently that the older anti-epileptics of the past...it actually acts upon the "firing mechanics" of the brain, which now they feel causes a misfires and begins the actual problems with the spasms of the vessels around the brain that then brings on the migraines attacks...so that to me yes started to actually makes sense for a change...okay so I was told this new medication was 80% effective with few to no side effects other than taking about 5 to 6 weeks of slowly working to get up to 100 percent of the dosage to help me not have so many migraines in my bloodstream...with a small chance of some tingling of the fingers and feet...well I thought hell I can deal with that if that is the only side effect and that is said to go away after the body adjusts...so of course like anyone in my position...I go in get the sample pack and start off with a positive outlook, one pill a day for the first week in the evening...and after a week...the very next Sunday...after two days of feeling very weak, out of breath, dizzy, extremely nauseated, almost to the point of vomiting, nearly fainting, then working into what I thought were chest pains that resembled the ones from my first heart attack...we ran panicky to the ER as I could not breathe and my chest felt like a tractor was on it...needless to say the jerks in the ER kept me overnight basically told me nothing tried to brush me off with "anxiety attack" sent me home with Pepcid (I never was told for what) and Antivert for the Vertigo (I was never told why I was dizzy either). so I came home Monday still totally ill, still extremely dizzy, worse I did not tell the ER I had been hearing voices, (it had happened even in the ER. but after they told me they thought I had Anxiety I sure as hell was not going to tell them about hearing voices!) and last week I spent the entire week still just as ill or worse, with no answers. By this past Sunday, I was really getting concerned, then suddenly out of no where as I sat again outside out our deck, I began to feel like my entire torso from my waist up was rocking either side to side or back and forth, sometimes slow, then faster, depending on which way I looked. I thought it was inside of my head like vertigo, until I opened my eyes, and looked down and hell no!!! My Body was moving by itself...like I had no control!!!! I just about freaked and called my husband out so he could confirm what I was feeling, and yes I was involuntarily moving! So, again we make another trip to ER, they give me Ativan, do a CT Scan, the NURSE, now not the ER doctor, but the nurse comes in unhooks the IV says they did not find anything and tells me it is ANXIETY!!! To which I utter bullshit!
Well after much digging and research and mind you this was all given to them at both visits to the ER!!!!! I find out even though extremely rare!!! TOPAMAX is given FOR DYSTONIA (which is what I am experiencing by the way and is a rare adverse side effect) BUT IT CAN ALSO CAUSE THE SAME EFFECT ON PEOPLE TEMPORARILY and may need to be tapered more slowly to due that effect for some people!!!!
So that is our wonderful medical system at work!!!!
I realized I ended this so quickly and my reasoning was because I have been weighing whether I even wanted to share it with all of you or not. For the first time in my life something has hit me so much that I am in total humiliation and embarrassment that I was not quite sure I could handle coming here to tell this.
But then I have been able to tell you so very much, from the abuse, and all of the other things that have been so rampant in my life over the years, why would this be any different? Well, I felt one reason is because it was something not even I really understood...it took me days of hunting on line, going to site after site to figure out it is a neurological disorder and can be rare caused by different things sometimes medications, sometimes by illness, sometimes hereditary but not one person tried at all to explain it to me at the hospital ER!!! All they wanted to do is blame in on Anxiety and IT IS NOT FROM ANXIETY AT ALL!!! I felt like they were trying to make me feel like I was nuts...hell I know I am nuts...LOL, I don't need them telling me that...I wanted to know why and the hell my body was swaying and rocking back and forth by itself for no reason and I had no control over it!!
So for any of you that may be interested here are some links about Topamax the medication for migraines and trying to reduce the number of them as well as dystonia and some of the causes of it also...:)
http://www.wemove.org/dys/dys.html (Great Site) http://www.dystonia-foundation.org/defined/
(By the way I also found several articles where Topamax is actually used to HELP STOP Dystonia in people, so there is a good side to this also...it is going to be a coin toss for me, if the symptoms go away as the medication slowly builds and gets leveled and my migraines go down in frequency then it is worth all I and my family have been through if not, then I stop the Topamax and go back to square one...pain meds and fight the system and doctors for them again)
My thirst for knowledge about the medication I am on (Topamax) for the migraines has led me to want to know much more about the neurological disorder of Dystonia, what are it's causes, how they treat it, if they do, and why I was not really aware of it's origin. I have read some really interesting information about movement disorders over the past few days and felt there may be some of you out there either with migraines, or know of someone that has migraines or possibly one of the movement disorders. I never realized how many people have them, they do not have a certain race, gender, or age they hit, but it seems that just about any one of us could be suseptible to having the deep basal ganglia that are like the transmitters between our brain cells...they are responsible for our motor skills, such as walking, talking, movement of our hands, feet, mouth, even eyes, and all can be affected in one way or the other by this neurological disorder.
I think the number one myth is that it is some type of mental or psychological problem or anxiety problem!!! That is definitely wrong, and from what I have read this is also one of the most misdiagnosed illnesses in the world! My interests in the field of medicine stem back to when I was a teenager and volunteered several summers at our local hospital. I was fortunate enough that our neighbor was one of the head nurses there and she took me under her wing so to speak, and I developed a thirst for knowledge in everything that had to do with the field of medicine. In my early 30's I was even accepted to Nursing Academy but due to raising two children that needed me at that time, I turned down the opportunity and continued to spend the time with my kids and work, and although I wished at times I could have been a nurse, I never have regretted making the decision to be with my kids instead. Also, my own illnesses from migraines, to a very early diagnosis (at 17) of hypertension, and then knee surgeries, plus the other surgeries and things I have suffered from have made me want to know all I can find out about procedures, medications, surgeries, and the latest that is here to help us all out of the battle we endure as humans on a daily basis with pain and suffering.
Over the course of the past three years, my eyes have really been opened to other facts, from how lousy our entire medical system really is in our country, to how many people are without medical assistance, insurance, and go without medications daily because they just cannot afford them. I also know all to well the battle of Disability, and the years I have endured now in my own battle for my benefits as well as spoken to others in my position. So, in so many different facets, from survivor to victim, the medical community has and continues to be a huge part of my daily life. For myself, all of the knowledge I can gain about my own illnesses, symptoms, and medications give me power. For all of us know our doctors are too busy, there are too many new drugs that doctors do not even know all about, especially all of the adverse side effects, the pharmaceutical companies are pushing drugs out the doors in all time high rates, and lining their pockets, plus I would gather some of our government officials and some doctors also. The only power we have over our own body's now is to try to get as much information as we can about our treatment, illnesses and medications, then ask questions, to our doctors, nurses, hospitals, pharmacists, and all of our health care providers!!!! If you feel something is not right, ASK!!!! They are humans also, and they can make mistakes. They are overworked, overloaded, and not beyond doing something incorrect!!! Not on purpose, but just due to the workload of patients, paperwork, and so forth.
So, here is a list of URL's that talk more about Dystonia, as well as some of the other movement disorders:
http://www.care4dystonia.org/ (I downloaded the .pdf from this site, and read it. It was really good!)
http://users.arn.net/~tahowell/dystonia.htm ( at the bottom of this site as well as some of the others above are links to many other great informational sites like We Move and so forth)
There is lots of information here from Parkinson's Disease to Wilson's Disease to MS, Dystonia and more...some about even migraines and also ET(Essential Tremor).....
Now, to make all of this more complicated, I stopped the Topamax, and discovered I am still having the same symptoms. After more exhausting research, and I had even mentioned the symptoms to the doctor who sees me for anxiety, I found out that it may not be the Topamax at all, but Remeron given to me by the physician who treats my anxiety. He put me on Remeron due to the difficulties I have with sleeping. Most nights due to pain from the Physical problems, I do not sleep well at all. Even though the dose Of Remeron is small, and I take it only before bedtime, I did a search on line of Remeron Dystonia, and the first thing that popped up is a huge article about Remeron Induced Dystonia!
This sent me into another realm of research, and also having to just quit this medication also, to see if it was the culprit making me more ill than the not sleeping.
Needless to say, the possibility is that is either of these medications has caused the problem, it could be permanent to an extent, and I will always suffer with the ailment. Of course, there is also a possibility that neither medication has caused it, and I could be suffering from early signs of Multiple Sclerosis, a form of a brain tumor, or several other ailments that can cause Dystonia, all of which will not get better, but continue to deteriorate in the years to come.
I realize we have taken for granted most of our lives that the professionals in the medical world are almost like gods. I have done it in the past, and most of us have. But, for our sakes, as well as the health and well-being of those we love and care about, I feel we can no longer go to our doctor, take his word for something, take a prescription to the pharmacy, and feel like we are 100% safe. We must be self- educated, aware, and mindful of signs, symptoms, and how we react, and feel. I have found out all too often; take the Emergency Room trips for example, those doctors did not do one thing to try and figure out what was wrong. They labeled me with their own bull of a diagnosis, with no explanation to me as to what could be wrong, and sent me home frightened, confused, and wondering if I had something life threatening. Now I face the fact that I may have to deal with another health issue, and the stigma that goes along with it. Although I am not alone, it is a disorder that plays upon self-esteem, and the way you feel about yourself. It can be embarrassing for myself, my family, husband, and everyone around if the symptoms continue as they are. Plus this problem also creates a fog at times in my thinking. I have a difficult time remembering words, how to spell them, and it seems my short-term memory has been affected.
My message is from this has many facets. Most of those facets are common sense. If you experience new medications, or have side Effects, are worried about not getting all of the facts from a doctor, ER, or hospital, never hesitate to ask questions until you get answers that you feel comfortable with. Do research if you still feel Uncomfortable. The Internet has a wealth of knowledge and you can find the answers to your questions. We have to be pro-active in this day and age about our own health. After all, the number of doctors is limited, the numbers of patients continue to grow, medications are being produced at record rates and put on the marketâ€¦and I feel sometimes even the doctors may not have an idea about all of the potential adverse reactions a patient may have. Never be afraid to ask the doctor, nurse, your pharmacist, and do Your homework when it comes to your own health, and the health of your loved ones. We can no longer put our health professionals up on a pedestal, thinking they are godsfor they are human, flesh and blood, and can also make a mistake Just like all of us.
Take care of yourself¦and those you love,
copyright 2005, Ria SteeleSend us your comments on this article