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I have been taking Lamictal since October of 2007. I e...

Posted at 12:40 AM on Aug 28, 2008 by coasterman, #33929
I have been taking Lamictal since October of 2007. I experienced some of the symptoms (muscle pain in the head and neck) before I started the medication. I have experienced panic attacks since July of 2005. I have had mild heart palpations since I was in my mid 20's (I'm 36 now). I have had what I would consider a below normal energy level since my mid 20's also. Ok so like everyone else I am thinking I'm a hypochondriac! However, I was diagnosed August 28th 2007 with having Lyme’s Disease and also Hyper-Thyroid (same time, same lab-work). Two weeks later I was diagnosed with Bi-Polar Disorder (this is one thing I knew I was battling but didn't know how to handle it). My physiatrist started me on Lamictal and I did the standard ramp up to 200mg. I also was started on a 90 day treatment of Dyoxicycline for the Lyme’s and Methimazole for the Hyper-Thyroid. I was very very weak and was only able to stay awake for short periods of time (4 to 5 hours max). Just an fyi, I am not overweight, lazy or unmotivated. I have the physical appearance of perfect health. This, I think works against me as the Dr's seem to think I'm just whining. Mater of fact; my Primary Care Physician never tested me for Lyme’s. I went to an Urgent Care Center which tested me for Lyme’s disease and I came back positive (they also tested my Thyroid levels and found the problem with my THS levels) I told my Dr the results and he insisted I have same test done again. Guess what, new tests, same results. My symptoms today are very similar to what I have seen posted many times. Muscle pain (entire body, some areas worse than others), heart arrhythmia, racing heartbeat, intense palpitations, nausea, foggy “un-plugged” mind, fatigue, weak muscles, muscle cramping (especially after repetitive motion, such as strumming a guitar), panic attacks (much more severe) and the latest addition to the group, Insomnia. Muscles pain in my head, fore-head, jaw, temple, neck (front and back), shoulders, is terrible to say the least. The pressure in my fore-head (right under my brow) makes me feel like I need to close my eyes or rest (resting does not relieve anything). The front of my neck is so tight at times it feels like my jaw is being pried down. I could go on and on. On my quest to find out what else is going on with my body I have had 2 Echocardiogram’s on my heart and abdomen, 2Nuclear Stress Tests, blood work out the wa-zoo, MRI of my brain, 2 CT’s of my Head and Neck, Chest X-rays, Endoscopy, Colonoscopy, and all revealing nothing. Most doctor’s I have encountered seem to want to treat the symptoms, not the problem/disease. I believe I know why; we (the ones who are there for solutions) tell them what the symptoms are (how we feel). We of course are thinking “this will help with a diagnosis of the problem/disease”, when in fact (I feel); the doctor’s thought process stops there. They don't know what’s wrong with you but they do know what your symptoms are so....bingo, let's treat the symptoms. Don’t misunderstand what I am saying. I’m not saying, “Most doctor’s don’t know what they are doing” or “don’t take your meds”. I am saying you and I are one of the 20 to 30 patients most doctor’s see daily (100+ weekly). They may be caring and good people but they are just as human and fallible as you and I. My advice is this; (and I am taking my own advice) don’t always “pop” into your body what the doctor suggests/prescribes, without doing your own research. Heck most of us won’t buy a car or more importantly, send our kids off to a college with out doing your own research (we just don’t trust those shinny brochures). Your body and your health are worth you doing your own research. Just keep in mind, Pharmaceutical Reps are always at your Dr.’s office (sit in the waiting room for 10 minutes and I’m sure you will see one). Reps are paid to do one thing; encourage (push) the Dr.’s to promote use of the Pharmaceutical Companies drugs. My wife and I have been doing our own research on Lamictal (after a year of taking this stuff) and the side effects associated with this drug. We have searched through many (many,many) web sites for information and we have talked with pharmacists and Dr’s for opinions. Although I’m am not thoroughly convinced that Lamictal is the cause of all of my symptoms, my wife and I have decided to lower my Lamictal slowly from 200mg to 100mg. I am now taking 150mg daily (three days now) and plan on staying at this level for a total of two weeks before lowering to 100mg. I do fear dropping the dosage to quickly (potential side effects) or lapsing into a mania. To help avoid a manic episode my wife and my immediate family are all “up-to-date” with my course of action. They are on “Red Alert” and have promised to keep a close eye on my behavior patterns and moods. (I don't want to put them through another hyper-mania episode, its much too devastating). I do want so badly to feel healthy and alive again and at this point I am rather frustrated with the Dr.'s ability to help me achieve this goal. Remember it is called “Practicing” Medicine. So now I’m going to practice a little, very carefully and cautiously. As a foot note; I have recently (past two weeks) been re-tested for Lyme's with a negative response. I am keeping in mind Lyme's test are very inaccurate (still hoping this one is accurate). My thyroid is under control and normal, so.... let's see if dropping below 150mg of Lamictal will eliminate some of these other symptoms. I will keep you posted. Erik
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Reply about 1 year ago on Oct 19, 2008 by lizardess, #13626

Erik. It sounds as if you have been through a very trying ordeal. I have been treated--sometimes rather unsuccesfully--for bipolar disorder for about twelve years. I had an ER visit a few years ago for an unrelated emergency and was amazed at how quickly I was "treated" and released. I relayed this information to my MD. She asked if I told them I was bipolar, and I said yes. She advised me not to disclose this information in similar circumstances because I will be treated as a "bipolar patient" and not as a "regular patient." Real physiological symptoms are often dismissed by doctors and nurses as bipolar symptoms and even as imaginary complaints. Don't forget: the media has done bipolars a great disservice by portraying us as raving lunatics who are eager to harm ourselves and others.

If you must report you are taking Lamictal, my suggestion would be to say you take it for depression. Period. Don't offer anything more. The only reasons any doctor would need to know what medications you are taking is to make sure the medications aren't contributing to your illness or to make sure any medications or treatments they might carry out would not conflict with what you are currently taking. I'm no MD, but I can't imagine the "why" of why you are taking any medication would be so important that you had to disclose it.

I have made the mistake of telling doctors and friends I am bipolar. Their attitude toward me changes immediately. And it's not for the better.

For what it might be worth to you and to anyone else reading this post, my doctor recently (last week) added Abilify (2 mg) to my Lamical (300 mg), and this has been very beneficial. My fatigue has disappeared, and many of my other side effects are less intense.

Good luck to you, Erik. It's unfortunate that controlling this disorder is difficult, and we are often tempted to just give up. Me? If I begin to feel a lack of confidence between me and my doctor, it's time to move on and find someone else. Find a psychiatrist willing to take the time to help you. Diagnosis and treatment based on incomplete information can be very dangerous.

Lizardess

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Reply about 1 year ago on Oct 20, 2008 by coasterman, #13668

Lizardess
Thanks for your reply and your encouragement. I did change Dr's and with very pleasant and positive results! The funny thing is the Doc pulled up info on his pc (while I was going through my long and boring story about my medical history and experiences with Dr's) and he brought to my attention that almost every side affect I am experiencing could be associated with Lamictal...hmmm. I have dropped to 100mg s daily and am very tempted to go to another med.. I just hate having to deal with this! How long have you been on Lamaictal?? Were you on anything before?? What side affects did you have?? Just curious... Also I was on a SSRI (lexipro) which my wife and I think pushed me into mania, mania and more mania. We both knew something was amiss but we both figured I was just high strung or just impulsive. Now I'm not sure if I could manage my mania or not without meds. Two reasons I am thinking this... 1. SSRI's exacerbate mania. 2. Knowledge is power, I know now what animal (BP) I am up against. There are of course numerous other reasons to get off this stuff, however, the relationship I have now with my wife, my kids and the rest of my loving family is priceless and I'm afraid of messing it up. I am prayerfully considering this but will find a psychiatrist and get into some counseling before making any final decisions.
Thanks again for your reply. It makes me feel good that someone took the time to respond to my post.

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Reply about 1 year ago on Nov 09, 2008 by starlinked, #14316

HMM..hyperthyroid discovered the same time as bipoloar...Aren't the symptoms of hyperthyroid extremley similar to bipolar? I'm sure you have thought of this already..but it seems like you are treating two known positives.and then throwing in the bipolar tx as well.(I don't know your time frame) Also what is the cause of the hyperthyroid? Pituitary tumor ruled out?
Lyme disease also has three or four "stages" with the last stage affecting brain function I believe it is visible with an MRI.

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