UPDATED PATIENT GUIDE FOR ICER REVIEW OF MIGRAINE PREVENTION MEDICINES

GUIDANCE ON PATIENT SUBMISSIONS DURING PUBLIC COMMENT PERIOD

DUE BY MAY 8, 2018

Now is the time for all of us to tell our journey through the maze of Migraine Hell! Please see the URL for further information or if you would like to participate. 

Here is the full URL to see the information:

https://www.headachemigraineforum.org/icer/

Fed Up With Pharmacists, Doctor's, Lupus, Medications and Fed up with too many side effects! Loving Fishing, and Better Weather

Was out at the lake yesterday, but the wind picked up the wrong direction and I had to come home. I can't stand in the sun due to the Lupus and meds etc... and I HOPE I finally have some sunblock for my FACE that DOES not cause breakouts. I FINALLY ALSO GOT HUMANA AFTER 4 WEEKS OVERDUE OF MY RA MEDICATION BACK ON TRACK! THEY ARE SUPPOSED TO DELIVER IT TUESDAY! I hope so, my fingers, THUMBS ARE THE WORST, WRISTS, ANKLES, EVERYTHING IS SO STIFF, HURTS, I COULD NOT EVEN BUTTON OR UNBUTTON MY JEANS OR ANYTHING THESE PAST FEW DAYS... 

I can't cut up fruit, and even trying to be out yesterday cutting a few tree branches down for the trash, I accidentally hit one of the branches on my leg, and it was just a little nick, and it bled everywhere. I had to come in and I already have spots on that foot and ankle where mosquito's bit me and it itched so badly, I've got a rash where I scratched it in the night... So I've had to bandage up my foot so much it looks like I cut off half my foot!!! And it's just a few scratches mainly, but if I don't the pups want to lick it, and then I was outside this morning, weed eating and spraying the weeds in the back, raking up and so forth. So, I fear infection so badly. Ever since the incident on both thighs where I had the cellulitis, that turned into "holes" in my legs, and I still have terrible scars, that although I went to the wound care people for 6 weeks in Dallas, they still never really healed where they covered over and look nice. I am almost embarrassed. Between those, the cuts on my knees from the replacements, and now for some reason, I have "spider" veins so badly in my ankles they look horrible!!! And it is so odd, I never had any problems, then about a year ago or more, 

I began getting them all over both ankles. I don't know if me spraining them so badly, that Sunday of Mom's funeral, and I had already sprained the right one twice before, if they "broke" those vessels that badly or what, but they are so ugly. I've asked the doctors and they told me that insurance probably would not pay for it. But, they also tend to "seep" under the skin, so at times those ankles where the spider veins are so bad will "weep" and cause my ankles to swell. I know they have new treatments now. They used to put saline through them, and they said it hurts like hell. But, now I think they can "laser" them... I am thinking about going back to the foot specialist I saw with my ankles being so badly sprained they would not quit hurting. Plus the right one would swell so much, I could not walk on it. He put an injection of corticosteroids in it, and that really helped to stop the swelling and pain. But, the spider veins make my ankles look like I am an old, old lady! I guess though after all of the surgeries and scars from them, I get to where I don't care if people think they look bad or not! I refuse to COVER UP and burn up and not wear shorts, when it's hot! 

Anyway, been a busy week, and I've been busy every day doing something. I still have not done  that stupid lab work, but it has to be fasting, and I get up so early, I can't go for hours without my coffee or tea... last time I ate breakfast early, then went for 8 hours without food and then went in that afternoon for the blood work, rather then trying to go in at 8AM. And I got kind of peeved at my Cardiologist last week. ^ months ago when I was there, we talked about putting in a pacemaker, due to my heart rate being so slow especially at night. It will be at 43 beats or less at times, and she suggested since I take the medication for the "extra beat" I have she could do the pacemaker. But, of course once it's there it is forever. So, this time she talked about sending me to a "heart rythym" specialist. She said he could possibly try a "different medication" or decide whether to do the pacemaker.. Well I said, 1st of all, I am taking too many meds as it is and I am just about ready to throw them all out the window and use "natural" supplements, because each time we try a new medication, I have problems from it. Then she admitted she DID NOT do the "medications" this specialist does "because there are so many side effects"... so I said well then, "if" I decide I am "bothered" too much by the arrythymia THEN she could DO THE PACEMAKER AS WE ALREADY TALKED ABOUT! She was the one who just told me 6 months ago,, the pacemaker was the simplest way to "correct" the slow heart rate!!!!! So, WHY WOULD I GO TO YET ANOTHER SPECIALIST, THAT FIRST OF ALL UNLESS IT'S LIFE OR DEATH, I AM NOT TAKING ANY NEW MEDICATIONS!!! I am FED UP WITH THEM, AND ALL OF THE SIDE EFFECTS THEY CAUSE!!! 2ND OF ALL, she can do the pacemaker right here in my hometown, as a day surgery, and I can go home in a few hours. I DO NOT NEED OR WANT YET ANOTHER "SPECIALIST" THAT I HAVE TO GO TO DALLAS AND TRAVEL TO SEE! It's bad enough with the Rheumy, Pain doctor, and the Orthopedic surgeon, without adding to the list!!!!!

FED UP WITH PHarmacies, and them "not doing what the doctors tell them to do!" This means YOU HUMANA!!!

FED UP WITH HUMANA SPECIALTY PHARMACY! They have SCREWED UP 3 WEEKS IN A ROW, & I STILL DO NOT HAVE MY RA MEDICATION!!!!!

I'VE BEEN ON THE PHONE WITH THEM AT LEAST 5 OR 6 TIMES! EACH time they have "a different" reason, and I told them I am fed up and this is why I DESPISE USING A MAIL ORDER PHARMACY! You "never get a straight" story" as you do when you can see the pharmacist face to face!

I got so mad this morning after weeks of them "making every excuse" when basically THEY WANT TO TELL MY DOCTOR WHAT I CAN AND CAN'T TAKE! WHICH IS BULL! But, I "chewed her out" and hung up... the woman on the phone, was already being a bit "rude" and that just make me more upset, so I told her off, (but I did not say any curse words() LOL although I wanted to! And just hung up on her, THEY ALWAYS TRY TO BLAME IT ON THE DOCTORS! When it is THEM THAT HAVE SCREWED UP!!!!!

They always want to "say the doctors office is messed up" when it is usually THEM THAT ARE MAKING THE MISTAKES! Plus now they as I said on Facebook, want to "tell our doctors" what they "can and can't do"....

It is none OF THEIR BUSINESS OTHER THAN TO FILL THE MEDICATIONS AND GET THEM TO THE PATIENTS!!!
They are causing me needless pain, needless wasting of my time on the phone again and again. They are WASTING THE DOCTORS TIME, with Paperwork"

Diabetic Nerve Pain and New Clinical Trial by Cure Click

85% of people with DPN say #diabeticnervepain affects them daily. Research studies enrolling now. Payment varies by study up to $300. #sponsored #cureclick pic.twitter.com/HKjwOJpDw6 See if you qualify! 

http://curec.lk/2Ib9i7t

Sponsored by Cure click

Crohn's Disease New Clnical Trial by Cure Click

Housebound with #Crohns flares? Local studies are enrolling now. Payment varies by study up to $750. Learn more! #IBD #colitis #sponsored #cureclick http://curec.lk/2j2LqIY

#AnkylosingSpondylitis - Clinical Trials by Cure Click

#AnkylosingSpondylitis? Research studies enrolling. Earn up to $500, varies by study. #AxialSpondyloarthritis #axSpA #AS #sponsored #cureclick Learn more! https://curec.lk/2Eu7ZxF

#Parkinsons patients, and Clinical Trials

For #Parkinsons patients, in addition to the more well known motor symptoms, up to 50% of patients also suffer from excessive daytime sleepiness. This can have a significant effect on the quality of life of both the patient and their caregiver, and in some cases be even more profound than the motor symptoms.

A new clinical research study is looking at the safety and efficacy of an investigational medication for excessive daytime sleepiness in patients with Parkinson’s disease (PD). For patients who meet the study criteria, the trial will last about 9 weeks and involve 7 visits to the study center. Qualified participants will be provided compensation for time and travel.

Please consider helping medical research in this important area by participating in this trial. You can learn more and begin the qualification process at https://curec.lk/pdblogger.