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Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: Apr 26 9:22am | Replies (6794)

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@dawn_giacabazi

Hello @lauriedr
I can feel your frustration through your note. I have a little experience in life long issues. I also have seen many of patients with similar frustrations however I am no expert. I have found over the past couple years that sometimes it is in the best interested of the patient to simply wean them off everything and start over again. I know that is very difficult to hear but I wonder if this is what your doctors are thinking. Our bodies become so use to the drugs and treatments that they no longer effective. (Just like a patient losing weight, they hit a plateau and they need to change it up to kick start it again.)
It might be beneficial to discuss with your physicians PGx Testing. This would help them find the best most effective medications to treat your symptoms without going through all the different trial and error periods. Here is a link to Mayo Clinics PGx profiling. http://mayoresearch.mayo.edu/center-for-individualized-medicine/pgx-profile-service.asp

Please know you are in my thoughts and prayers.
Thanks
Dawn

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Replies to "Hello @lauriedr I can feel your frustration through your note. I have a little experience in..."

Hi Dawn. Coincidentally, I just had a similar genetic test offered by<br>Assurex. My psychiatrist provided it to me. Medicare covers 100% of the<br>$5500 test, but my insurance wouldn't cover it. Luckily, they provide a<br>sliding scale cost structure. The maximum out-of-pocket expense for<br>patients is only $330.00. The test covered my liver's ability to metabolize<br>ADHD meds (not applicable to me), Opiods, antidepressants, antianxiety<br>meds, anti-seizure type drugs, and one other category I can't recall. Here<br>is what I learned: I am on the proper opiods and metabolize normally<br>("green light meds.") I am on Cymbalta, a "yellow light" med, which for me<br>means that I may need a higher dose than 120 mg. The other antidepressants<br>in the "green light" category for me all cause weight gain. I lost 100<br>pounds 2.5 years ago, and I am now at normal weight. Recently, after two<br>months on Depakote (not an antidepressant but a seizure-type drug) I gained<br>20 pounds. I stopped the med. I will not gain more weight again, so I am<br>not interested in changing antidepressants for a "better" choice. Regarding<br>anxiety-type meds, I am on exactly what I should be on: klonapin. Now I<br>know why ativan and others were not effective. For the anti-seizure type<br>drugs like neurontin, all were in the "yellow light" category, with each<br>med having abnormal, unique metabolic results. I lost 2 years of my life to<br>neurontin; now I know why. Topamax, which I took 400 mg per day for 15<br>years, was not noted on the test. In any case, it was not very effective<br>and I lost IQ points, permanently, I fear. I have been off that drug for 2<br>years and I still can no longer remember names, faces. I have trouble<br>finding my words still. For a brainiac like me, this is devastating. To<br>wit, I cannot recall the final category of meds, but folic acid is in the<br>"red" category. Enzyme #6 in my liver does not function at all, and my body<br>cannot convert folic acid to folate. Low folate levels are linked to heart<br>disease and Alzheimers, both of which run strongly in my family. I<br>researched forms of folate available to consumers, and chose the one that<br>does not need to be metabolized by the body. It is expensive, as I avoid<br>unnecessary additives as well, but I now take that pill every day. To<br>summarize, besides a needed boost in Cymbalta, I am on good medications for<br>my body. Does the test you mentioned cover additional drugs or drug<br>categories?<br><br>Dawn, I am aware of the cold turkey theory. In fact, I tried to get an<br>appointment at the Mayo Headache Clinic in Rochester, 2 hours from my home,<br>but they wouldn't even schedule an appointment with me until I am 2 months<br>free of all drugs. It is a great theory, but torture to live through. As it<br>is I barely make it through a day without excruciating pain. I am allowed 2<br>days of fioricet, 2 days of percocet, 2 days of rizatriptan. I am not given<br>enough of any of the three meds to follow that schedule, so I have many<br>days on no pain meds. I must point out that I am triptan resistant, and<br>take the pills as a placebo only, hoping my positive nature plus the pill<br>will give me relief. It rarely does. I receive moderate relief from the<br>incessant pounding with the percocet (vicodin is ineffective for me, as the<br>genetic test noted.) I get even less relief from fioricet, which I have<br>been on and off over the years. I supplement the Rxs with benadryl, which I<br>get via IV in the ER, so I figure there must be something to it, zofran,<br>and cyclobenzaprine. I forgo klonapin when I take percocet. I know the drug<br>interactions and safety comes first because I have 2 kids in their early<br>20s. I cannot take NSAIDS at all by mouth due to Roux-en-y, but I do<br>require IV Toradol in the ER. It is part of my cocktail. I avoid Tylenol<br>because it is in the percocet and fioricet, and it causes me rebound<br>headache if I take acetaminophen more than twice a day. I will be in the<br>mental ward of a hospital if I go off of klonapin or Cymbalta. I tried to<br>reduce Cymbalta to 90 mg/day, and I just about had a nervous breakdown<br>within days. Physically, I cannot tolerate any more pain. I spent $700 on<br>the ThermaZone machine, which circulates ice cold water around my head<br>nearly 24x7. It replaces the IceKap and other "ice hats" that melt quickly<br>and don't last long enough. Ice helps numb the pain; it dulls it<br>significantly. I am true to my word that I will need long-term<br>hospitalization if I have to suffer worse than I do now, for any length of<br>time. I have gone above and beyond by utilizing alternative and<br>non-medicinal therapies, to great personal expense. Until you have walked<br>in my shoes, not other migraineurs' shoes, but my own, you cannot possibly<br>imagine the low quality of life I have. Mine is a life unlived. I question<br>why I was even born, to have to suffer through such agony. The lessons I<br>take from my experience is to live in the moment, even if it only lasts for<br>a single moment. I take nothing for granted. I have great empathy and<br>charity toward others who have suffered losses worse than mine. Please<br>don't ask me to stop my pain medications. So few work for me as it is. I<br>want to get better so badly. I don't know how much longer I can live like<br>this. Thank you for responding to my post. I appreciate it.<br><br>

Thank you for that history. It is very helpful. It certainly is apparent you have tried many things as far as medications and alternatives. I am certainly not advising you to stop your medications as that is well out of my scope. Just some Alternatives that have helped. I was in a bad car accident which resulted in multiple injuries including a fracture through my sternum manubrium joint, broken clavical, broken foot, multiple fractures in my back, post-concussion syndrome & partial complex temporal lobe seizures. I had migraines daily so bad that I could not open my eyes to see I could not stand sound. I had seizures daily. We tried acupuncture, acupressure, chiropractic, physical therapy, water therapy & Reiki along with biofeedback, nerve blocks. I had 12 to 22 injections every week for a year to my skull (greater and lower occipitals), sternum and multiple areas of my back. Tried many, many drugs with horrible side effects. Some of those drugs include Klonopin, Neurontin, Depakote, Dilantin, Tegretol, phenobarbital, keppra & the worst was Stadol. I was admitted to Mayo Clinic ( Rochester ) Seizure clinic & went through their Pain Rehabilitaion Clinic. http://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview

They took me off all my meds very carefully and strategically. I am now 100% controlled with Trileptal. 10 years seizure free & I use Frova for any break through headaches. For me, I have no nasty side effects from the these medications.

Congratulations on your weight loss.
Praying you find comfort.
Dawn

I have not even heard of some of these medications. I wish my doctors would try something different for me! The pain is getting worse not better. I saw my GP today and she thinks things are going well because of all the labs. My blood pressure was 178/118 and that goes up and down, everythings else was okay. But wouldn't the high BP indicate pain?

I read about the Pharmacogenetic testing recently here, asking my pain<br>management dr about doing it, but he told me to go to my principal dr., who<br>is a nephrologist. I could go to my neurologist bec have had reactions to<br>nearly 50 meds. Some have been so severe I have been hospitalized, so<br>remain in chronic pain. Reading Mayo clinic about it, most likely medicare<br>would not allow it, and cannot afford $3,000. It is something I believe I<br>need badly. Sad, I have lived 30+ years with such pain going from dr to<br>dr. Not worth living. ladyjane86<br><br>

Hello @ladyjane85!!

We have done the testing on about 70 of our patients and only 2 had to pay out of pocket.

As long as the patient is on 2 or more medications treating 1 or more diagnosis then medicare has approved for the pharmacogenetic testing (cheek swab).

Mayo Clinic is much more in depth monecular profiling. They will work with you and your insurance providers.