| RECAP OF APRIL, 2006 MEETING By Don Jeffries Speaker: John Magaudda, Pharmacologist Remember that medications are great, but they all have side affects. What works for one person will not work for another person. Many people wonder why it doesn’t work for them? It is very difficult to know the answer, we are the same, but yet we are all very different.The one thing I would emphasize, is to always be honest and forthright with your doctor. They are the ones who treat you and know your medication history. Keep your doctor informed about all medications, prescription and OVER the counter drugs. They all inter-act and react with one another. This should also include any vitamins and herbal remedies that you area taking. One day a patient came in who was taking Neurontin, had been taking it for quite-a-while, but she came in and said she wasn’t feeling very well. I feel like I am a zombie walking. I asked what medications are you taking now that you have not been taking before. She said nothing. So I asked are you taking a vitamin or something else that you haven’t been taking? Finally she said she had taken a benadryl for hay fever. Little things like that which you probably only take once a year or so affects all the other medications that you area taking.Be sure to tell your doctor everything you take, even if you think it is insignificant. I have found that all too often over the years people area taking prescribed medications, and then add herbal supplements, and it changes everything, because your are really mixing two medications. Your doctor doesn’t know what you are taking at home, so he must be informed!Besides telling your doctor everything you area taking, you should tell your pharmacist also! Especially if you are getting your prescriptions filled at two (or more) different pharmacies. As a nation, we are over medicating ourselves. Sometimes we think if a little is good a lot is even better. You have to be truthful with yourself! Those of us who are on medications, even it is only one medication, should carry with us at all times the name(s) and amount (2mg or 500mg etc.) of the medication(s) we area taking. Your list should name all over the counter and herbal remedies that you area also taking, and the amount. There is also a Medic Alert Foundation International, that will keep a list of all your meds and anything else that you are taking. Medic Alert Foundation International 2323 Colorado Ave. Turlock, Ca 95382 Ph. 888-633-4298 The cost is about $20.00 per year which includes a medical alert bracelet with the phone number. You must be your own advocate. Ask questions: What am I getting, Why am I getting this? Remember, THERE ARE NO STUPID QUESTIONS! Diet can also affect how a drug interacts with your body. Caffeine can really have an affect of how your medications work. In most cases caffeine will enhance, or make the drug stronger in its affect on your body. But, in some cases it will lessen the affect of your medication. Sometimes in taking drugs, it is trial and error. You try it and it doesn’t work, your try something else. Then there are the times when the two drugs do not work alone, but they work when taken together. Be sure you always get a printout of each drug you take. Read what it says about the drug. Do Not take your doctor’s word or the pharmacists word for it. Study what it says and what the side affects are.The more knowledge you have about your condition or disease, the more knowledge you have about the medications that you area taking, the better off you will be. The same goes for the over the counter medications the vitamins, minerals and herbs that you take. You can get on the internet and find out about these products. REMEMBER, though, any one can get on the internet and write an opinion and let you think it is a fact! Make sure what you are reading on the internet is authentic. Not just a chat room or BLOG room! Chat rooms are opinions, and it is anyone’s GUESS what a blog room is all about.A couple of sources for checking things out are: www.rxlist.com www.medline.com Be sure to check out several sources. Medications are to help you function as close as possible to your regular quality of life. If they don’t then one needs to take a look at other alternatives.Taking more than one medication can sometimes create problems. One drug may keep anther from working well, or one drug could intensify the effects of another. It can be a real balancing act between keeping you healthy and avoiding drug interactions. To stay safe with your medication use, keep these tips in mind. Be up front: let your doctor and pharmacist know about all the medications, prescription and over-the-counter, vitamins, herbs, minerals and dietary supplements you use. That means everything from antacids to eye drops to laxatives. Learn about them. When your doctor prescribes a new medication, ask some questions: What is this medicine used for? Can I take this medicine with other drugs? If there are possible interactions, what are the signs I should watch for? Report Problems. If you experience any side effects, let your health care team know right away. XTRA XTRA XTRA Some of you may have seen the TN segment on XTRA about six weeks ago. Our group had many questions about the video. Jane Boles of National TN answered most of our questions. We thought you might be interested in how you get mentioned on National TV! Cherie: Thanks to your group for their observations. Ally the 16-year-old patient has bi- lateral TN and had her MVDs performed by Jannetta and Casey. She is still on medication because she has very strong bouts of severe .pain. The MVDs obviously didn’t work for her. This points up how we MUST FIND A CURE for all our patients, but especially for the young ones who are faced with multiple decades of pain!! Please tell your group that XTRA had very specific parameters for the patients they wanted to feature: * Women *Between the ages of 24 and 46 - I told them about Ally and they decided at the last minute to include her *They had to be pretty - with a photo approved by XTRA before moving forward -I found this really appalling and offensive, however, see below *Living on the west coast or outside of NYC - They filmed the AZ woman because they were shooting another spot in the area around the. same time. *TN only NO tumor, MS, etc. *Family with children - of course Ally was the child herself *Willing to have surgery during Feb., which XTRA could film -they started asking for someone who would have gamma knife I explained - at length -the other surgeries available and was able to shift them to MVD. *video pain diary showing severe pain. While I agree with your group, unfortunately this is tabloid TV news and it was my job to get them what they wanted.. if I had been unable to do that, the story would not have been on. Before they came to TNA, they had been working with an LA neurosurgeon’s publicist - yes, publicist! who had been unable to find patients they liked. This wasn’t a documentary that TNA produced, therefore telling the story that we know is best....but this is a very small step forward and we hope to build on it.XTRA is also a syndicated show so different local stations purchase it and put it on the air when it’s appropriate for THEIR programming. For instance, it’s on the air at 7:30 pm EST on the local ABC affiliate in Gainesville, but on at 6:00 pm EST in Tampa on the local Fox affiliate.......it’s just all over the place, and, again, not something we have any control over.Thanks for everything, Cherie. I hope this answers some of the questions that your group has. I can only imagine how frustrating it must be to see something like the XTRA piece that is such a pitiful representation of the pain of each of you. It’s frustrating to me, too, but on a less personal level. We’re still here fighting like crazy to draw more attention to you all and TN. I truly appreciate your patience and understanding as we take these little baby steps!Jane Boles, Executive Director Return to Archives |