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Posts (216)

Jun 10, 2018 · Tips on minimising withdrawal symptoms from Effexor (aka Venlafaxine) in Depression & Anxiety

@gb1988 based on your symptoms, I suggest that you obtain pharmacogenomics testing to see if you properly metabolize medications based on your genetics.

In a nutshell, based on your genes, you may be too slowly or too quickly metabolizing medications. Also, and this is very important, many medications inhibit (slow down) or induce (speed up) these genes as well. This is what is meant by "drug-drug interaction."

I was sick for 12 years, eventually took myself to Mayo Clinic, asked them to evaluate me for drug hypersensitivity, and we figured out that I don't properly-metabolize most drugs because of genetic polymorphisms (mutations). Many of these polymorphisms lie within the cytochrome p450 liver enzyme system.

If you can't get this done at Mayo, there are several mail order companies that do it, as well. I have used OneOme (owned by Mayo). You need to find a company that is certified by the state you live in to do this kind of testing.

Google "pharmacogenomics testing" and "PGx" testing.

You'll need to have your doctor contact the PGx testing lab to initiate the process.

Jun 10, 2018 · TBI and brain aneurysms in Stroke & Cerebrovascular Diseases

@kristivila you are definitely not alone in your thoughts and feelings. I also have a brain injury. Mine is from a brain surgery that I learned I never needed, and it took me years to learn how to deal with "you don't look sick." TBI is a lot to deal with on its own, and when you add in factors of others not understanding or appreciating what you are dealing with, it can be very depressing.

What has helped me the most is seeing a psychologist who has extensive experience with treating patients with brain injury. My doctor does extremely well with explaining why I have the issues I have in a manner that I can understand. Based on the location of my brain injury (frontal lobe), my executive functioning is compromised, and he explained to me in normal, every day terms how this then displays in my thinking feeling, reacting, etc. For instance, when someone upsets me, or something bad happens to me, it will take me many days longer to "get over" it. My doctor explained that executive functioning stores a person's emotional teflon enabling people to let things easily bounce off of them and get over things… my teflon is now broken, so things that happen to me don't just slide away from me anymore. It takes a lot longer.

Having this doctor explains things is amazing, but he is also teaching me cognitive behavioral therapy tactics to work around my brain's issues. For instance, I used to not be able to remember a three item grocery list for only five minutes. Now, I can remember 80 percent of a grocery list 30 days later.

If at all possible, try to find a doctor with experience in working with people on cognitive behavioral therapy. CBT has helped me tremendously.

Jun 10, 2018 · Genetic Testing for Mental Health Medications for Depression, Anxiety in Depression & Anxiety

Hi @ainsleigh, in addition to myself, we had Mayo perform pharmacogenomic testing on my youngest daughter last January. She suffers from anxiety and social phobia, and knowing that I have so many drug polymophisms, we needed to know whether or not medications are an option for her. Turns out that she did inherit most of my drug metabolism polymorphisms, so meds are NOT an option for her, and it was nice to figure that out before a drug regimen was started.

Instead, per Mayo's suggestion, she is seeing a therapist at home for cognitive behavioral therapy, and we are returning to Mayo in July so she can attend their week-long teen anxiety clinic. During this week, my older daughter also has her first appointments for initial evaluation by Mayo, and she will get her first pharmacogemics testing performed.

It stinks that medications are not an option for us, but there are other sources of help out there. From my personal experience, I know that these medications will make a person ill if genetics play a role in their metabolization.

Jun 10, 2018 · migraine type headache for more than 15 years! in Brain & Nervous System

Hi @gfisher100, for my migraines and other headaches, I try different things.

For migraines, after battling them since age 16, in December 2015 at age 45, I got a daith ear piercing for my right ear, and I haven't had a single migraines since. I still get what I call barometric pressure and weather-related headaches, but no migraines since this piercing. I got it on my right because that's the side of my head where I usually had more headaches when it came to frequency.

For the headaches I continue to have, I always avoid bright light, and sleeping with a sleep mask always helps, plus it applies pressure to my head. Sometimes, my migraine meds help (sumatriptan), but these can't be taken more than twice a week or headaches worsen, so I use these as my last defense. Before sumatriptan, I will try tylenol and/or caffeine.

I avoid Advil because I already have colon erosions plus my mom was told not to take it as she is pre-dementia and it can worsen it. I also received e genetic report that states that I don't metabolize it properly.

Plus sleep and hot showers as warmth helps my head more that cold which actually makes it hurt more.

Otherwise, I do nothing… I had pharmacogenomics testing done a few years back, and I don't properly metabolize most medications, including all heavy duty pain meds, so those just aren't an option for me.

May 17, 2018 · Med detective needed, award given - adrenaline spikes in Diabetes/Endocrine System

@sierrawoods Mayo Clinic and OneOme have been working to bring prices down. As time goes on, this testing will become more feasible for all. Fingers crossed. Until then, all my best to you, as well.

May 7, 2018 · Drug Induced Lupus in Autoimmune Diseases

@mrlncrvn have you always reacted to medications so quickly? Have you ever had strange reactions to other medications in the past or talon meds that didn't work, as well?

May 4, 2018 · Patients and caregivers are “Experts by Experience” in Just Want to Talk

Thank you again for the opportunity to share my story.

Apr 17, 2018 · Pituitary cancer - spread to bones and liver in Cancer

Hello @unix4fun, this is interesting because pituitary tumors are usually benign. I'm glad to see that you are with Mayo now and hope you see progress with them. Is this a type of multiple endocrine neoplasia syndrome? (I assume no if it is in bone.) For additional info, there are several pituitary-based closed, private Facebook groups that you might consider joining.