Mayo Clinic Connect
Do you ever feel like it might be best to just stop all treatments and start from scratch?
Liked by Lisa54
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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Did the doctors state the loss of weight was due to your medications
@lisa54 A my doctors are at Rochester. I have just had a stumbling block. I know they will figure it out for some reason, bad luck, the end up writing an addendum to the text books. lol
I pray your health improves Despite All Odds.
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.
@johnwburns. It does take a long time. I pray that we can change that for our children & grand children. I pray your send wife has found the right treatments now. As far as handling it. Some days not so well. But good people like you and others here on connect remind me, I am not alone. Thank you for your comments and support. 🙂 much appreciated!!
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.
They noted a combination. Loss of appetite, even with Ensure, etc., loss of fluid intake (as fast as I took it in, Chronic Kidney Disease Stage 3 eliminated it. Also, my last CBC showed a low glucose reading. Glucose is necessary for proteins and minerals to bind too in doing their job in your body.
Liked by Dawn, Volunteer Mentor, Lisa54
My weight loss secondary to dumping syndrome. I have had severe vomiting of stomach bile for about 6 months. I was admitted to the hospital in April for 9 days severe abdominal pain and blood pressure of 200/140’s. Rough month. But better now. Add Cholestyramine 30min before meals. Haven’t thrown up in 2 months.
That’s the most important thing I learned as a member of the Employer Committee of The President’s Committee on Employment of People with Disabilities one year after the A.D.A. was signed into law. We taught large and small companies, as well as people what could and couldn’t be done or said relative to a disabled persons rights. I met with numerous disabled people each year at the national convention “to learn the problems they faced with their disability and those of us who got over the hump learned from others.” Minnesota’s State Disability Council and Minneapolis Disability Councils that I was on during that period of time also added to my understanding.
Liked by Dawn, Volunteer Mentor, Teresa, Volunteer Mentor
Fortunately, with todays technology things are moving a little faster than years ago. Yet, the brain is a complex organ and it often takes a little longer to diagnose a specific problem.
@irvkay312. So wonderful. 🙂
yes, I have blood draws a lot…my arms make me look like a needle addict.Lisa Lach
your as well…I am hoping your doctors can figure out a plan for you.Lisa Lach
Liked by Dawn, Volunteer Mentor
Ask them to use a butterfly needle, it’s smaller and hardly noticeable when they use it.
how can I find out more about this
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.
ifthere is no cure, as I faced with the condition of Tuberous Sclerosis;then I would assume your best choice would be similar to what I chose.Seek to enjoy the Quality of life within the area of not aggravating yourcondition.
Lisa, go into your phonebook, or on Google type in Minnesota State Disability Council. That will take you to their website, concerns, area’s covered and I believe you may be able to get on their mailing list under contact us.
Liked by Teresa, Volunteer Mentor
Lisa, go onto Google. Then type Minnesota State Disability Council–that should take you to their website where you can contact, ask questions, inquire and may even be able to chat on matter. You can go to their connect part to ask about how to get more information or even get onto their mailing list. Another item you could use is Senior Linkage Line at 1-800-333-2433 if you type their website before calling, it can prepare you to see what area’s they may cover. Try those two items first.
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