spiny

If that is the issue, I'm sure that we can rustle up a tablet to send to her!!!!! Just need to know.

Well Batch, two shots would wipe out your part D Medicare and put you in the hole!!!!! Reminds me of all the new Hep C adds. They want you to call, there is help for your Hep C. Yes, and the cheapest course of this new treatment (there are actually two) is $84,000.00. My understanding is that you can get the treatment in the East - Egypt or one of those nations, for $12,000.00 Talk about a rip off. > I really hope something works, but from your statement, I doubt that this will be it.

Jeebs, Have you sent this to Fab yet? Any reply? Just wondering. Like, is she in the hospital or what????? That would explain the no internet thing. I tried to log in two years ago when at the hospital with a family member. The site was blocked!!!! That would explain the no CH site thing, but email should go thru. Update would be welcome!!!!

Hahaha!!! Thanks CHF. ;D alley, aren't we supposed to have 'aged out' by now? Jokes on us, right?

My experience is that my feet and ankles swell terribly. Also, it costs 548.00 for 90 - a months supply. The patent was supposed to run out years ago, but they got it approved for diabetic nerve pain and thus extended the patent. It did not help my CH either. Why they consider it a drug of 'potential' abuse is beyond me!!!!!

Yes. It is the CNA's job. Or used to be. Not anymore. Not in the three hospitals I have dealt with over the last several years. Five days and no clean sheets or bath is what you are expected to accept!!!! > When I got to my room after back surgery, the aid refused to even help me roll over. The back pad was in place for that, but she absolutely refused to help. After I had just spent 8-9 hours in surgery. Then I was told that I had no 'magic button' as they no longer did that. Then I raised hell. Called my surgeon too. I hurt like the dickens and was getting no where with them. The direct delivery system was set for continuous release of pain med. I was supposed to have the patient button for immediate release of more into my IV when I needed it. She was told not to return to my room and the floor nurse came in and took over. I let them know that I would not be treated that way by anyone and while I was not ambulatory, my husband would raise hell at my request. Also, told her that I would contact the head nurse of the hospital as we had a very good working relationship since the nursing staff f'ed up my 12 year old's pain meds years before. Things rapidly got better, but my back up stayed in the room for the entire stay. Since then, I have been 'lost' twice after surgery!!!!! My husband breached their sacred doors with 'Where is my wife' both times. Once, I was found in a far room, alone. The other, the head anesthesia doctor was confronted and admitted that the anesthesia nurse had OD'ed three of us with a 5 hour dose 'put you out med' for less than an hour of surgery. He was really angry and had spent the last 4 hours with me keeping me going on the ventilator and additional drugs to keep my lungs clear and me alive. I had to stay in the OR for 5 hours!!!! Trust them not. Enough of my trials. As I said, you would make a great advocate for any patient. 8-)

Hey Fab!!!! So sorry about your current issues. You should know how much we miss your cheerful and comforting posts around here. Hoping to see you back soon Hon. Love ya!!!!!! Smile knowing what a difference you have made here and how we look forward to seeing you back soon. Hugs!!!!!! spiny

Well, I fail the age criteria.

Yes, catching it in time can make a big difference. If you feel the shadow start of it, you have a better chance of a fast abort. My allergies are year round, so I don't find spring to be worse. My cycle is from the fall equinox to the spring equinox. Sort of. Mold and mildew are the culprits I suspect. But they are all respiratory allergies. So, I am not sure that they really affect my CH. Some day we will know the cause.

Pixie, you would make an awesome advocate for any hospital patient. I never let a family member stay in the hospital without staying there with them. Otherwise, no one protects them from lousy care or asses supposed to take care of them. They get no bath or clean sheets even!!!! 'We don't do that anymore.' Right. The stories I could tell about lousy hospital care would make people cringe, just like the account of your mothers stay. And you are right. If you had gotten a Sister involved in the mess, heads would have rolled for days.

Yeah, that was you! ;D Right on and way to go. Agreed about the hospital!!! There are few left actually run by the Sisters unfortunately. I had a month long holiday in one as a teen. Sister found unhealthy conditions in my room when she came by to visit (bed pan on the bedside table). She raised the holy roof on that floor too!!!!! I was never left on the bedpan with no one to take it away again. Sister speaks and everyone jumps to attention!!! Sisters of Mercy rock in my book. I saw more of them than family and friends combined during my month long stay.

Late to the party Pixie, but really glad to hear from you!!!!! Thank heavens you were there for your Mom. You saved her life!!!!!! Hugs!

Really sorry to hear that robertr. I take it that it is supposed to kick in quickly and hasn't? It bites that you are still suffering.

Well, demerol will mess with busting and is only a partial pain reliever. Actually not a good med for CH. It will not normally kill the pain of a hit. Perhaps he should de-tox for 5 days and try seeds. Easy and no trip. He will have to commit to giving up the demerol for those 5 days before busting though. For shadows, or low level hits caffeine is a great abortive. In coffee or an energy drink. Chug a cold one at the start. Really can help. Ginger tea can also kill them. If he gets nocturnal hits, melatonin is a big help for many. The D3 Regimen is also great. For some, it kills the cycle and for others, it lowers the pain of the hits. Works for a lot of Cher's. Does he know his triggers, other than barometric pressure drops? Those things are really good to know. Hope that we can find an answer for you here!

shya, I really hope that this gets resolved quickly for you two. Since he is episodic, I bet the changing weather will help!!!! Weather fronts can be very rough. > So can elevation changes and flying. When does he normally cycle? It appears from your post that the flight was a big factor. ATB

This is Prednisone and should start to help very quickly if it is going to help. I have been given Pred. for CH and TN at different times. I am sure that they plan on this being a short term treatment so she does not suffer any long term side effects. It will get her thru the acute phase till something else works is the idea I suspect. It reduces inflammation and stuff. It usually kicks in quickly. I hope that she is better today!!!!!!! They are giving her a lot of stuff trying to get her pain down. Then they should be able to figure out what worked. I hate that they are bombarding her, but they must figure it is needed.

Thanks alley!!

Elavil was a moderator for my pain 40 years ago. It kept it lower than normal. For that, I was thankful. I hope that she is doing better now. Please let us know? See if they will check her vitamin D levels. Cheap and fast. Low D can have an adverse effect on CH. So many people in Aussie land have really taken the sunscreen to heart that they are vitamin D deficient. As in girls in their 20's are suffering from Osteoporosis!!!!! It would not be out of line to ask for the D test. This was on world news not a month ago. So, bring it up? Even if she does not have CH, you don't want to see her have Osteoporosis either.

Thank you Frilling. I too have TN along with CH. It is a -itch. > And yes, I have found help and relief here. Knowledge is power. Someday, they will find the gene. I contributed to the Duke Scoliosis Study years ago. I have a moderate S curve type, my oldest daughter has the single curve type and my youngest the worst S curve type. They are still trying to find the gene, but yes, for my family the Scoliosis is genetic. Our Back Specialist has done 4 surgeries on the three of us and will soon do a 5th!!! Needless to say, we have been on a first name basis for 22 years now!!!! Some day they will announce, if they haven't already, that it is genetic. Would I have prevented their birth had I known? No. We understand each other totally in this one area. We work together and laugh and cry together over it if needed. Hugs!!!!!

THMH We stay in touch via FB. She is doing great!!!! And so is her beautiful daughter. You should see her workout!!!!!!!!! Buff does not do justice. Cross Fit is a helluva workout. She is amazing and seems to be very happy and PF. 8-) Makes me really wish I was 30 something again watching what she does.

I am so sorry to read this. Studies do indicate that there may be a genetic component. That being said, it by no means indicates that we all need to worry about passing it on. My son has migraines and one daughter has Aural (?) migraines. Which apparently means that she gets the aura but no pain. My mother had migraines. I do not. However, my son now has ice pick headaches. I am the only Cher. It is a scary thought that you might pass this on, but what is to be done? At least your daughter has you and her father who understand her condition and she has a jump start on treatments. That beats the heck out of years of mis-diagnosis and pain. Her family will be her rock.

Well, a very loved Ch'er swears by exercise. Her CH is very severe and she still busts, but now she is heavy into working out and competing. She looks amazing and feels terrific. This Lady would kick most anyone's butt in Cross-fit. Well, I think that is what you call it. So, go with what works, as always. Some run at the start of a hit or work out at the start. It works for them. Even if it is not the serotonin, you are PF and that is what counts, right?

He is not the first Neuro. to prescribe anti-depressants. Many do when the first lines of defense do not work. But I am surprised he went to it before giving the Indo. a trial run. He must think it is not HC. I am so sorry for her suffering. But, I am glad that she is under constant care at the hospital. Hopefully you are able to spend a lot of time with her there. Just to make sure that they are on their toes!!!! Hospitals over here suck. Perhaps they are better where you are. I really hope so. spiny

The tentacles breach my temple and reach for my face. If only my hand were stronger to keep it in it's place. But now the pain is searing and burning off my face. My hand hovers in fear for it is winning the race.

Yes shocked, we have to be grateful. That is a horrible story.