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Starting all over

Posted by @dawn_giacabazi, Jun 15, 2016

Do you ever feel like it might be best to just stop all treatments and start from scratch?

Liked by Lisa54

REPLY

Hey @dawn_giacabazi, what brought this on? Sounds like you feel you’ve hit a dead end or are getting tired of searching for answers. What’s going on?

Feel horrible. Feel like I’m drunk. ER visits, Dr visits, passed out twice, muscle cramps all over (debilitating cramps), rapid heart rate (130’s) BP good, eyes lag behind. High shite blood count but no notible reason. Thought for sure potassium or magnesium or sodium would be the reason, all normal. Another trip to mayo. Just not sure I can make it this time. Just feeling down, I guess. I take so much medicine that interact with each other. I guess my thought is stop taking them all and add back one at a time. I know they won’t but just a thought.

Dawn, i’m so sorry to hear that! I’m sending you a virtual hug. My husband and I had this conversation a few times in relation to his depression medications. Not treating the same thing, but still the same talk. We wondered if wiping the slate clean would be better than just continuing to add/subtract things. We never did it and he has actually found a combo that works really well for him so he is in a good place. I hope that brings you some hope! We ended up sitting down with the doctor at one point and basically writing everything up on a white board to talk through it – what interacts with what, what hasn’t worked, what counteracts what, what does work, what causes which side effects. It took awhile but we felt more informed and in control seeing the whole picture. Do you have a doctor (or group of them) you could do that with?

I’m also tagging @mlemieux, @briansr and @johnwburns in hopes they can offer some support as well! Hang in there 🙂

Liked by Michaelb

Thanks. I know I’m not alone in this but still frustrating. I know if they would just do the PGx testing it would take ALL the guess work out of prescribing medicine

I’m not clear on everything your going through but try to hang in there because you Will find a solution beginning with a new doctor. I’ve had eight spinal surgeries and have been fighting for 30+ years. A lot of times I have given up but something from inside kept me going. I’m now at that point again after being down for over a month. My dr says I need another surgery in my thoracic regi0n, whice would leave me with very little of my natural spine left. I said no more! I too have just stopped taking certain meds and came out better. But that is dangerous. I’m also dealing with five immune diseases, one which just slammed me down for 2+ weeks. All I could do is ride it out. I want answers much like you do but I’m at the, I give up stage, but I can’t quit yet. I’m 60 and right now could care less if I made it to 61. But here I go rambling again when I’m saying is you’ll find that right dr and get the test you need done and I believe that you will come out on top!! I and I’m sure the many people on this site am going to keep you in my prayers. And prayer does work, I don’t know how but they do. Along with you and our prayers 6hat doctor will show up and get you going in the right direction again. You can do it!!! briansr

Thank you for encouragement. I to will pray for gods healing in your life. I do love my docs and know they are doing their very best. Very long and difficult (non text book) medical hx. So many side effects from the medications that are just complicating everything. Feels like we take 1 step forward and 4 steps back. I am 42 with 3 young children and trying to do my best. God always carries me through but I guess just needed a reminder. I truly thank you for that!!!

Liked by Sue

@dawn_giacabazi

Thank you for encouragement. I to will pray for gods healing in your life. I do love my docs and know they are doing their very best. Very long and difficult (non text book) medical hx. So many side effects from the medications that are just complicating everything. Feels like we take 1 step forward and 4 steps back. I am 42 with 3 young children and trying to do my best. God always carries me through but I guess just needed a reminder. I truly thank you for that!!!

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Thank you for your reply. I know how tough it is tk battle an illness when you have children. When I was first injured I had three boys, the oldsst2, 10, the youngest about four. I tfid to cetudn to work but had to have another spinal surgery in one year. I was offered no job that my sugeon would approve so started college and had to drive approximately 120 miles a day to go. And I was also building a home in the town I still live in, a college town, but still 120 mile daily trip and watching my house go up. Received a BS EE in mid year 1990, but no one would hire me due to my ongoing health issues. So I started selling antiques, but of course the bottom finally fell out of the market. But only thing that got me up in the morning, made me study hard and make good grades, try to buy and sell antiques, was my three boys. I may have hurt like hell, run high fevers, been just not want to move, but I was at every teacher parent conference, plays, musical concerts. My boys helped do things around the house that I couldn’t, like unload and stack wood, some cleaning etc etc. But they heavy into track and basketball, debte clubs. But if you can name me another Father that was blessed to make it to all meetings, all BB games, all track meets, and debates, I’ll show you a very happy and proud Dad! This is the good part of having a screwed up back and whatever was thrown my way. It was great. And now I have a lot of great memories during a rough spot. As for now I’m a cranky old 60yr old with a body of a 90 yr old.LOL. But oh the memories!!! briansr

I try to remember through all our trials, God strengthens us. I own my own Home Health Care Agency and my trials certainly keeps me humble. Helps us understand and treat our patients more effectively.

However I have recently developed severe fatigue, dizziness, debilitating muscle cramps, severe headaches, fainting spells, rapid heart rate (150’s). I can hardly get out of bed. Went to ER the EKG however fast but normal sinus rhythm. All labs normal accept Sed rate, CPK and White blood count BUN & Creatine all significantly High. I feel like I’m drunk but trust me, I’m mot. Usually that indicates drug toxicity. Cardio says neuro problem and of course neuro says cardio issue. In the meantime I’m here lying in bed. I am not able to make the 6 hr drive to Mayo’s in this condition. Need to get stabilize d so i can make it back.

@dawn_giacabazi

I try to remember through all our trials, God strengthens us. I own my own Home Health Care Agency and my trials certainly keeps me humble. Helps us understand and treat our patients more effectively.

However I have recently developed severe fatigue, dizziness, debilitating muscle cramps, severe headaches, fainting spells, rapid heart rate (150’s). I can hardly get out of bed. Went to ER the EKG however fast but normal sinus rhythm. All labs normal accept Sed rate, CPK and White blood count BUN & Creatine all significantly High. I feel like I’m drunk but trust me, I’m mot. Usually that indicates drug toxicity. Cardio says neuro problem and of course neuro says cardio issue. In the meantime I’m here lying in bed. I am not able to make the 6 hr drive to Mayo’s in this condition. Need to get stabilize d so i can make it back.

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So final outcome. I have lost 43lbs so they had to reduce meds. TRILEPTAL reduced by 400mg & Labetalol by 400mg. Feeling much better.

Yes and no. All of my life I’ve gone through stages of epilepsy from Grand Mal to present Partial Complex, not to mention at least 2 migraines a week since the age of 13. Always being told no, or try this. When I began to take things into my own hands and lived in California at the time; I studied these things at Stanford Universities doctors library and learned a lot. Obviously with age, our entire system slows down in its operation and organ functions. There item one= medications have ability to stay in your system longer and create higher toxicity levels with less dosages. A CBC is most helpful in this sense, so as to see what blood deficiencies you may have as well as what supplements can help your medicine function more efficiently. Then of course, with the differentiation of our systems, some medications can only work for specified periods of time before raising them increases toxicity and over dosage. Example, in my case; “doctors had to change my medication at 6 year intervals, so as to avoid over dosage. Starting out with Dilantin and Phenolbarbital and moving to Dilantin and Mebaral, then Mesantoin, Trileptal, Carbamazapine, Tegretol, L?, tehen Keppra, Primidone, Mysoline and back to Carbamazapine eliminating Primidone entirely. Personally, I feel a lot has to do with ones body system and operation. In other words as we mature in understanding triggers and causes, thereby removing them from our life when possible; anxiety, stress, depression, etc. may not need as much medication to control the stability of our brain waves. Presently, at 77+ years, no seizures for up to 3 years, no migraines over 4 years; only bone pain from cancer and no fear since being put in Hospice a month ago.

irvkay312

@irvkay312

Yes and no. All of my life I’ve gone through stages of epilepsy from Grand Mal to present Partial Complex, not to mention at least 2 migraines a week since the age of 13. Always being told no, or try this. When I began to take things into my own hands and lived in California at the time; I studied these things at Stanford Universities doctors library and learned a lot. Obviously with age, our entire system slows down in its operation and organ functions. There item one= medications have ability to stay in your system longer and create higher toxicity levels with less dosages. A CBC is most helpful in this sense, so as to see what blood deficiencies you may have as well as what supplements can help your medicine function more efficiently. Then of course, with the differentiation of our systems, some medications can only work for specified periods of time before raising them increases toxicity and over dosage. Example, in my case; “doctors had to change my medication at 6 year intervals, so as to avoid over dosage. Starting out with Dilantin and Phenolbarbital and moving to Dilantin and Mebaral, then Mesantoin, Trileptal, Carbamazapine, Tegretol, L?, tehen Keppra, Primidone, Mysoline and back to Carbamazapine eliminating Primidone entirely. Personally, I feel a lot has to do with ones body system and operation. In other words as we mature in understanding triggers and causes, thereby removing them from our life when possible; anxiety, stress, depression, etc. may not need as much medication to control the stability of our brain waves. Presently, at 77+ years, no seizures for up to 3 years, no migraines over 4 years; only bone pain from cancer and no fear since being put in Hospice a month ago.

irvkay312

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PS: I’ve lost 20 lbs. in less than 2 months and 2 1/2 inches around waist also–cancer

irvkay312

Thank you @irvkay312. I look back on occasion and wonder just how different treatments would have been if we only knew then what we know now. I know i have referred to genetic testing many times but it really is the key to unlock all the medication answers.. http://mayoresearch.mayo.edu/center-for-individualized-medicine/pharmacogenomics.asp?_ga=1.114659847.1472789207.1465656936 I am so sorry you have had to endure so many obsticles. I will keep you in my prayers.

I was in a car accident when I was 26 yrs old. Sustained numerous injuries. One was a head concussion that went undetected ended up with post-concussion syndrome and multiple seizures. I have was put on multiple different drugs including Tegretol, phenobarbital, Depakote Dilantin, Neurontin, Keppra horrible side effects. The local pain clinic gave me 12-22 nerve block injections every week without fail for 1year. I asked to take a break because I can no longer explain the pain because it hurts from injecting the same spot every week. Doctor just discharged me saying it was “my negative attitude they not working”. Finally referred to Mayo clinic many years later. Admitted to seizure lab for 10 days, put on Trileptal and have been seizure free since & no migraines. So thankful for all my mayo doctors.

@dawn_giacabazi

I was in a car accident when I was 26 yrs old. Sustained numerous injuries. One was a head concussion that went undetected ended up with post-concussion syndrome and multiple seizures. I have was put on multiple different drugs including Tegretol, phenobarbital, Depakote Dilantin, Neurontin, Keppra horrible side effects. The local pain clinic gave me 12-22 nerve block injections every week without fail for 1year. I asked to take a break because I can no longer explain the pain because it hurts from injecting the same spot every week. Doctor just discharged me saying it was “my negative attitude they not working”. Finally referred to Mayo clinic many years later. Admitted to seizure lab for 10 days, put on Trileptal and have been seizure free since & no migraines. So thankful for all my mayo doctors.

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It can take so long to work things out, with epilepsy and everything else. My 2nd wife and I were in a car accident about 2 weeks after we got married, guy ran the light and T boned us on her side. She had what I know now what was like an absence seizure at the time of the event. Over a course of 8 years she slowly development panic disorder then started having grand mal seizures. She was diagnosed with MS because they found white calcification patches on the film and put on dilantin even though MS usually doesn’t present with seizures. It took years to make the blow to the head the root cause. Sounds like you are handling things well and best of luck in future.

A lot…tired of all the different doctors and medications too. I did stop seeing the doctors in my area and went to Rochester, Mayo. They were the best. Answered all my questions and talked to me on a level I could understand what the ???? is wrong with me. I learned my condition there is no cure but at least I know it’s up to me about my treatment and time line.

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