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Everything posted by clustermom13

  1. Ting, Right now the forecast calls for no rain . Temps in celcius: Friday Hi 17, Low 8, Saturday Hi 29/Low 11, Sunday Hi 21, Low 15. Should be very pleasant, but bring a jacket as it can be a bit windy there by Lake Michigan. Looking forward to meeting you, finally!
  2. I had to take the coach bus once from Chicago back to Michigan. Was a nice arrangement. I recommend it. Then you should still be able to take the shuttle to the hotel.
  3. Andrew is working on a song to share. He sings too .
  4. Put em in a warm, dark place. When the part at the bottom turns completely white, leave it in the dark for one more week, then move to the sunlight and hope for the best. Many of us have not had much luck with these bags, but maybe you will turn the tides.
  5. That's just what I was thinkin'. We have not been forgotten.
  6. Sorry, but even though that is FUDGE, the colors make it look nasty!
  7. My family will be there, all 3 of us! I am anxious for Andrew to finally meet others with CH. Not wishing this on any other young people, but sure would be good for him to meet others his age who completely understand.
  8. I agree with skibo, if you are going to stop the zoloft on your own, be careful. Though you may not even need it (once my son's pain got under control, imagine! he wasn't depressed anymore!! duh) your body is used to it. Taper carefully. Maybe someone else will have good advice on how quickly/slowly it needs to be done. And jeebs . . . you made my day ;D ;D ;D
  9. Agent, Just wanted to give you a big THANKS! for the Monster Rehab "heads up". Andrew loves it, and he said he can really chug it down, so much better than the carbonated version. So he finds that it works so much faster and is more effective for him. Right now we can only find it in the singles at the checkout at Walmart. Sometimes he drives over there just to get one. I am hoping to find a way to purchase in large quantities. Might just call the Wal Mart manager
  10. So glad that you are feeling better. Just keep after it.
  11. I'll have to remember that! HAHAHAHAHA ;D
  12. Ok, now you're just buttering me up, do you need to borrow some money? Please keep us posted on Michaels progress. If you are comfortable, updates on his dose and INR results as they go along as well would be very helpful as well. Hoping this works for Michael, so much.
  13. First it depends on if your prescription is for pills or injections. The pills, slow, most likely by the time they are absorbed, your headache will be gone anyway. The injections we have firsthand knowledge of. Prior to clusterbusters, my son used them A LOT!. He felt fortunate to be prescribed basically as much as he needed. Here's the problem: the more he used it, the more he needed. Oh it was plenty effective enough, but it caused rebounds. He got to the point where he would use it to abort a moderate cluster, and then within an hour he would pay with a killer! It became not worth the price of the rebound. Toradol took him to the highest heights of severity and frequency. Ask him today if he would like a script and he would say FECK NO! That was our experience. Be careful, and use it sparingly until you can get busted. I would advise against using it for very long, or very frequently.
  14. You flatter me!  [smiley=embarassed.gif] Assuming that he had taken 4.0 mg per day for at least four days and his INR was at 1.1, I would assume that after another four days at double the dose, it will probably be at about 2.0 - 2.4. The goal range in the study was 1.5 - 1.9, so he'd certainly be in the ballpark. Any dose change with warfarin will take about 4 days to exhibit in the INR. If he doesn't have any risk factors for bleeding (ulcers, etc.), he should be able to go up to around 3.0 with no problem. As time passes, they will begin to notice trends in how his INR responds to the warfarin, and dose him accordingly. Don't be surprised if they end up around 6 or 7 mg/day. A couple of things to note (not sure how much they told ya), but there are things that he should avoid ingesting while on warfarin. Alcohol (beer, wine, liquor as well as cough medicine, nyquil and the like) will enhance the effects of the coumadin. Also antibiotics, steroids, acetaminophen, and ibuprofen can cause his blood to be too thin. The risks there being inernal bleeding, etc. Be mindful of frequent nosebleeds, blood in his urine, or dark stools. I use the drig interaction checker at www.drugdigest.com. Any time he gets a new medication Rx or OTC, I recommend checking for interactions, if one is reported, you should discuss with your doctor. If it is a short term med, they may just lower the warfarin for a few days. Any source of vitamin K, will inhibit the effects of the coumadin, and cause his INR to drop, the blood to thicken. The only risk there would be loss of any attained results, headache-wise. (I have attached a list of the most common foods that contain vitamin K, and the relative levels in them.) Foods containing lower levels of vitamin K should be ok as long as they are eaten in moderation. What I tell my patients is you don't have to eliminate all of these things, just use moderation and be consistent. If you eat salad every day for a week one week, then none the next, it is very hard to keep up with you. Better to have a salad, once a week - every week. I think that's about it. I am happy to have something to contribute. Food_List_Containing_Vitamin_K.doc
  15. Just so you know, detox helps clear the path for these alts to work, but given the shape you are in, it is not imperative to do before your first dose. When those seeds get there, crush about 35 of em, and soak for one hour in bottled drinking water, only a shot glass is all you need. Drink the entire concoction, but have something like OJ ready to drink after, cause it is NASTY! Just remind yourself before you drink it that there is NOTHING worse that what you have already been going through. Make sure you don't eat for like 2 hours prior as well. And wait about the same after dosing before eating. Be prepared, you may get hit, AND HARD, during the dose, or even right after it. That is the beast fighting back, just remember it is part of the process. Otherwise, you may notice increased activity anytime in the following 24 - 48 hours. Don't distress, it will pass and in its wake, you will observe a new, hopefully less intense pattern. All the while, you will be detoxing, and by the time your next dose can be administered (5-7 days later), your detox will be done, and they will work even better.
  16. Ron, I assume that they are testing his INR regularly? (That is the blood test that shows how thin his blood is, which is so important because everyone's blood reacts differently to warfarin.) I'm just being nosy, but what was his last INR? Of course, I am considering trying this on Andrew. (In my own job, I monitor patients on warfarin.) Thanks
  17. So I disappear for a while and look what I miss! I am honored to be recognized among such wonderful selfless people. I am a much richer person for having "met" everyone here. May we all continue to fight and win!
  18. I've been off the radar for a while, and missed your entire story! Please know that even if I am not around, I think about you and pray for you just like my own son. I pray every day that you guys get some relief. I am happy that you are making progress with your detox. Just getting through the day with CH is bad enough, detoxing on top of that compounds times 10! I sat with my own son while he had to detox off abortive/pain meds (not as strong as methadone) three different times. After that, you cannot beg that boy to take ANY type of pain pill. He just had surgery with absolutely no pain meds, the doctors were stunned, but he held his ground. The pain that results from that crap just isn't worth it. Once it is gone, you will be free from it, and I hope and pray that it's absence will allow the alts to do their job once and for all! Hang in there, we all love you!
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