dehabel Posted June 14, 2020 Share Posted June 14, 2020 How long does it take to get relief from prednisone? Had the worst night of my life last night with these godforsaken things. Been doing D3 regimen for a week. WTH????!!!! Quote Link to comment Share on other sites More sharing options...
spiny Posted June 14, 2020 Share Posted June 14, 2020 A seven day taper pack, where you take 6 pills the first day, then 5, then 4......... brings me relief the first day. It lasts till I get down to 20mg per day If it is going return, that is when I know. On a longer taper, it might take two days before I get to a better place. Likely due to a slower build-up of the Pred. You took a full daily dose and got slammed? Ouch! Quote Link to comment Share on other sites More sharing options...
kat_92 Posted June 14, 2020 Share Posted June 14, 2020 @dehabel a steroid taper you should see results in a day or two. It can take a little while for the d3 to start working in your system. Have you done the loading dose yet? As per the instructions of the regimen? I took a Benadryl at bed time last night because my allergies have been causing me headaches and tooth pain. I took half of one along with my melatonin. I woke up without a headache today. You seem to get hit during the night: what are you taking before you go to sleep? Maybe try melatonin and a Benadryl. Kat Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 14, 2020 Author Share Posted June 14, 2020 I started the prednisone today. I am such a procastinator on pills because I just hate them and keep praying the last headache was the last, which is stupid because I know when the last one is almost immediately when it leaves. All my life they have hit mostly at night which makes it so awful because I don't even get one minute of build-up - just full force. I started verapamil yesterday 80 mg twice a day, I am not sure if that is enough, but I have pretty low blood pressure and it is rough on me in some instances. So last night, I took my 80 mg verapamil and 50 mg of Benadryl. At 1 got woke up by this nightmare - 45 minutes gone. At 2 up again and never fully left until 8 am when I got hit full force again and my husband made me take an Imitrex shot. I think I might have figured out the culprit, I had goat cheese on my burger last night and an avocado, both of those things have something with a t in them that supposedly triggers a headache. But, I have always eaten that stuff... I thought the D3 stuff was helping, my D3 number is 46 after an entire week of 50,000 IU a day of D3 so I am assuming I was pretty low before. My gratitude for all of you can't be expressed fully. You are a Godsend. My heart breaks for my husband, number one, I wake him up every single night, number two, I know he feels helpless and that might be worse than this...well, probably not... Do I need a prescription for melatonin? Also, I now have the correct prescription for Emgality, do you know if I can take that with the steroids? He also prescribed me Depakote, have not done that yet, but may tonight. Quote Link to comment Share on other sites More sharing options...
Rod H Posted June 14, 2020 Share Posted June 14, 2020 Sorry dehabel I called you sir in another thread. You should get relief today from the prednisone. I prolly would wait until your done with that before starting the emgality. Melatonin is sold with the vitamins and the gummy ones are good. I would wait on the depakote as well. If you get o2 you can take alot less meds. And there is no side effects to o2 and it stops most of my clusters in 5 min or so. 1 Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 14, 2020 Author Share Posted June 14, 2020 Thank you and it is okay, there is no way to tell if we are boys or girls with these "stage names". My real name is Chrissy. Thanks for the info. Calling doctor in morning about oxygen. I dislike him immensely, but I will deal with it to get it. Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 14, 2020 Author Share Posted June 14, 2020 How much melatonin do I need to take? Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 14, 2020 Share Posted June 14, 2020 People often start at about 9mg of melatonin, and then work up as needed/tolerated. Some people here take amounts in the high 20mgs or even higher. Melatonin plus Benadryl is a strong dose of sleep-inducing medications, though, so take care if you are doing both. Yes, GET THAT O2, ASAP!!!!!!! You're putting yourself through a lot right now that you won't need once you have the O2. 2 Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 15, 2020 Author Share Posted June 15, 2020 I am dying! I forgot just how bad this is. Quote Link to comment Share on other sites More sharing options...
jon019 Posted June 15, 2020 Share Posted June 15, 2020 1 hour ago, Rod H said: And there is no side effects to o2 and it stops most of my clusters in 5 min or so. Me too! 21 minutes ago, CHfather said: Yes, GET THAT O2, ASAP!!!!!!! You're putting yourself through a lot right now that you won't need once you have the O2. .....and we won't stop "nagging" you until you find a doc who will prescribe... or you "take up" welding.... It cannot be emphasized enough...it is a LIFE CHANGER...those meds you hate taking are likely to dust in a drawer...I KNOW it saved my sanity and perhaps my life.... and countless others. I can STILL tear up recalling the first time 35 years ago when OXYGEN caused a hit to drain away like water down a tube...and I KNEW I had my life back.......................... 1 Quote Link to comment Share on other sites More sharing options...
Rod H Posted June 15, 2020 Share Posted June 15, 2020 Drs. Are like carsalesmen and lawyers. Keep looking till you find one you trust and like. Remind em they work for you. They're people to and if you find one that will listen you got it made. I think alot of patients automatically bow down to a dr just because their a dr. Don't most want to help just be firm remind em you have this shitty disease and you need o2. It's not addictive and has no side effects. It just doesn't make big pharma rich. If that dr won't listen find one that will. 2 Quote Link to comment Share on other sites More sharing options...
mit12 Posted June 16, 2020 Share Posted June 16, 2020 Be careful with the prednisone, if you use It to much you can suffer bone loss. Quote Link to comment Share on other sites More sharing options...
Siegfried Posted June 16, 2020 Share Posted June 16, 2020 I did it once. I got nearly instant relief (was an injection first) and it last until I took the last pills of tapering down. So about two weeks. Then pain started again. But even medrol works very well, this is not the kind of medicine you should rely on. It's simply too dangerous. O2 is indeed the better route but you guys seem always having difficulties to get it. Here in Belgium, once a diagnosis of CH or even a diagnosis of a probable TAC is made, the patient is automatically entitled for medical oxygen lifelong, completely free of charge and as much as he wants/needs. Only disadvantage is that all the bottles have standard regulators build in that can do maximum 15 liters/min. So it is not possible to get 25 liters or use a demand valve. If one wants that, he has to look for his own private supplier and it comes also at his own cost. siegfried Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 16, 2020 Author Share Posted June 16, 2020 (edited) No headache last night, first night of complete relief in seven weeks. Can someone tell me what dose steroids you all use? My highest day was six 4mg.pills. So, I see that some say when they get down to 20 mg it does not work anymore, I wonder if I did not get the right dosage. They were from a gp. Thanks everyone. Edited June 16, 2020 by dehabel Quote Link to comment Share on other sites More sharing options...
kat_92 Posted June 16, 2020 Share Posted June 16, 2020 @dehabel i think you are taking a medroldose pack? It’s a very low dose steroid just to be taken for the week to cut the headaches while other medications kick in, or sometimes doctors think it willl get rid of them completely (they won’t). What else are you doing besides the d3? I’m so happy you had a pain free night!! Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 16, 2020 Author Share Posted June 16, 2020 9 minutes ago, kat_92 said: @dehabel I started the Verapamil two or three days ago and take Benadryl. My spell should be done naturally in a couple of weeks - like four...so, I am hoping this kicks it to the curb. Shockingly, when I got my bloodwork back the other day they found some blood disorder where I produce too many red blood cells. Something called polycythemia vera and yesterday I started what they call phlebotomy. Where they take a pint of blood out of me every week to get my hemoglobin and such where it needs to be - seems sort of medievel to me, but I wonder if this helped. Perhaps that is what made them come back after eight years. I also got melatonin, I did not like it though. I still got a bad headache and it made me feel weird. We will see what I do tonight. Everyone keeps telling me to get oxygen. Monday when I had an appointment with the jerky doctor I do not like, he told me I might have lymphoma because of my blood issue, so I got a little flustered and forgot to ask him. My appt with oncologist was much better yesterday and so, I have a new neurologist on Thursday and will ask him for the oxygen. I can't thank you enough for your help! ~Chrissy 1 Quote Link to comment Share on other sites More sharing options...
kat_92 Posted June 16, 2020 Share Posted June 16, 2020 My doctor was awesome. He used to work in an ER and said he had seen a few patients with clusters come in to the ER and he put them on O2 and they responded great. So he said “hey I’m gonna prescribe you an oxygen tank!”. Getting the tank was a production. Be prepared to get frustrated talking on the phone with people. Once you find a way to get the tank, the same guy will usually deliver it for you. My guy is great. He gave me an extra regulator while I was waiting for mine in the mail. He also gave me 4 masks while I was waiting for my special cluster O2 mask. Good luck Quote Link to comment Share on other sites More sharing options...
kat_92 Posted June 16, 2020 Share Posted June 16, 2020 1 hour ago, dehabel said: I started the Verapamil two or three days ago and take Benadryl. My spell should be done naturally in a couple of weeks - like four...so, I am hoping this kicks it to the curb. Shockingly, when I got my bloodwork back the other day they found some blood disorder where I produce too many red blood cells. Something called polycythemia vera and yesterday I started what they call phlebotomy. Where they take a pint of blood out of me every week to get my hemoglobin and such where it needs to be - seems sort of medievel to me, but I wonder if this helped. Perhaps that is what made them come back after eight years. I also got melatonin, I did not like it though. I still got a bad headache and it made me feel weird. We will see what I do tonight. Everyone keeps telling me to get oxygen. Monday when I had an appointment with the jerky doctor I do not like, he told me I might have lymphoma because of my blood issue, so I got a little flustered and forgot to ask him. My appt with oncologist was much better yesterday and so, I have a new neurologist on Thursday and will ask him for the oxygen. I can't thank you enough for your help! ~Chrissy Hey how many mg of verapamil are you on? Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 16, 2020 Author Share Posted June 16, 2020 80 2x/day Quote Link to comment Share on other sites More sharing options...
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