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Title: DHE therapy Post by Ray on Oct 5th, 2007, 2:59pm Hello Clusterville: I would like to hear from those who've received DHE push IV therapy and learn from you first hand how long of a pain free interval you've received from this therapy. I've been approved for this therapy beginning next week. It's actually slightly modified as I insisted that I do this OUTPATIENT. I will go in to the Neurology clinic at Ohio State University Hospital (OSU) 2x a day for the IV push DHE for 3 days, and use migranal NS for the 3rd dose. Thank you, Ray |
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Title: Re: DHE therapy Post by Sometimes on Oct 5th, 2007, 3:52pm Ray, if you type DHE into the Google search in the upper right hand corner, then click on search clusterheadaches.com, it'll show the posts that have been here on DHE. You should get back 197 results. :) |
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Title: Re: DHE therapy Post by E-Double on Oct 5th, 2007, 8:23pm Including one that i had today, I have had only 8 major attacks since July 8th when i was released from the hospital following a 3 day stay. I shadow heavily somedays but overall despite not being completely PF, it is a world of difference. good luck |
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Title: Re: DHE therapy Post by Brewcrew on Oct 5th, 2007, 8:54pm Ray - I have had two rounds of DHE push therapy. Both times I was SLAMMED with K8+ headaches within 36 hours of release (I was inpatient). The headaches went on for about a week or so (not all K8's) and then stopped. I enjoyed one respite of about 9 months, and the other, well, I'm still enjoying it 14 months later. This last one was helped by 6 mg of methysergide maleate per day for about 5 months, and is currently being supplemented by 900 mg of lithium per day. |
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Title: Re: DHE therapy Post by Ray on Oct 6th, 2007, 1:50am Hello Again Clustervillians: I don't wish to have people repeat themselves unnecessarily, however, I looked through about 40 of the nearly 200 posts via the google search, and not many spoke of the relief or lack thereof. I would appreciate the feedback to continue here. Although I am not exactly a pioneer in this therapy, I will be the first that this hospital has performed it on. I presented this to the neuro and he had the gumption to run it up through his superiors (he's a head resident neuro) and contact other centers, Jefferson among them, for their protocols. They even have to order the medication for the clinic as they do not have the IV formulation in stock. They wanted me to come in for 3 days stay, but I feel that would put an undue hardship on my family. Unless there's some problem obtaining the meds, I am going in Tuesday early AM, then Tuesday PM, and the next 2 days. I will be using Migranal NS for the evening dose. I could really use the break. Although my total number of hits per 24 hours is down, 3-5 hits during sleep is pretty rough. I know, wah wah wah..... I'm looking to my cluster family for some answers, prayer, and support. My experiences will be reported back for all of you. By the way, they are anticipating my procedure to take less than an hour each time and to let me drive home after each treatment. I do have to raise a little cash so that I can pay for their darned parking fees, but they are going to try to help me offset them in some way, if possible. I am looking forward to the relief, but I have been very much disappointed in neurologists in the past and have some anxiety about the whole affair. Thanks for listening (reading), Ray |
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Title: Re: DHE therapy Post by Brewcrew on Oct 6th, 2007, 8:58am My only piece of advice, Ray - make 'em push that tiny amount of drug S-L-O-W-L-Y. Over about a 10-minute period. It burns if you don't. Good luck. |
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Title: Re: DHE therapy Post by DennisM1045 on Oct 6th, 2007, 9:11am I don't have any advice Ray. I only offer my vibes and some prayers that everything goes ok and you get a break. -Dennis- |
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Title: Re: DHE therapy Post by E-Double on Oct 6th, 2007, 9:22am on 10/06/07 at 08:58:04, Brewcrew wrote:
though i feel the migranol had preventative qualities, it was nothing compared to the actual push. good luck brother and remember what Bill said. SLOWLY |
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Title: Re: DHE therapy Post by rolo65 on Oct 6th, 2007, 9:54am Ray, My experience with DHE was mixed. It did give me some PF days, but physically it takes a big toll. The DHE also was never able to break the pain long term. DHE is also very painful to inject. I finally broke down and asked my neurologist for lithium, and it works with some side effects. I have been 95% PF for 45 days so far. It has been a godsend for a chronic cluster head like me. Only 1 M tank for 30 days! Good luck with the DHE, and hope it helps more than it hurts! BW&PFDAN, Roland. Edit because it was not 90 days, memory and lack of concentration are some of the lithium SE's. |
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Title: Re: DHE therapy Post by thanksdad on Oct 6th, 2007, 10:24am Hi Ray, Sorry, I can't answer. I can only tell you that my dad has had success with this treatment. My doc and nero have refused to give it to me. They told me its too toxic on the body. Unfortunatly, they would rather pust the narcotics. I am treating with topamax, nortriptyline, & plenty of imitrex injections. I have been pf for almost 6 days now. good luck, my dad swears by it. sheila |
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Title: Re: DHE therapy Post by cash5542 on Oct 8th, 2007, 7:11am Ray, I was talking to Lisa on the way home yesterday and she said the dhe injections at home were ineffective for her and the dhe iv in the hospital was ok but not long term results like she hoped for. I remember her getting it and it was painful and should be slow. Also flushed out afterwards. I'm sure the nurses know this. Most of all I wanted to wish you luck tomorrow. I hope this works. I am still amazed at how each drug has a different reaction with each patient. There definately isn't one answer and it's worth a shot (no pun intended ;)) Charlotte |
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Title: Re: DHE therapy Post by Ray on Oct 8th, 2007, 5:37pm Hello Clusterville: Thank you for those responses so far. I just got off the phone with OSU and they want to begin Wednesday instead of Tuesday (tomorrow). Just wanted to keep you all up to date. With regards, Ray |
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Title: Re: DHE therapy Post by rolo65 on Oct 8th, 2007, 6:39pm I’m sorry; I just read your original post. I had a pick line in my arm and hit an ampoule every 8 hours for 6 days before I physically couldn’t take it any more. One week later I was right back to 3-5 K7-9 bangers a day. That’s just me and all are different! I did use it for breaks when getting 5 hits a day and every other day for awhile. A few times at the hospital for an IV push before that with no more than a week relief. If you’re episodic it may kick you out of cycle (did I just say that and I swore to my self I would never type the word episodic on this site!), but in MHO if your chronic like me, it’s just another option to get some relief. I truly hope it works, and if not at least you gave it a try and know what to expect if you decide to do it at home for a break now and then. BW, Rolo.. |
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Title: Re: DHE therapy Post by Ray on Oct 10th, 2007, 8:35am Hello: Today begins day 1 of the DHE treatment. I leave here in about an hour. Get those prayers and Thanks! Ray |
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Title: Re: DHE therapy Post by E-Double on Oct 10th, 2007, 9:04am REMEMBER>>>>>>SLOW PUSH!!!! and here is a tip ask for a warm compress for the arm. It certainly helped me with circulation and the ache that I had if they pushed even a tad bit to fast. best of luck brother |
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Title: Re: DHE therapy Post by Ray on Oct 10th, 2007, 11:08am Hello: I survived the first one. Not very uncomfortable. I still have the temporary IV port in my arm and back to OSU at 4:30 for the next one. Regards, Ray |
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Title: Re: DHE therapy Post by Brewcrew on Oct 10th, 2007, 11:27am What surprises me is that they don't seem interested in montoring your heart during the treatment. DHE is one powerful vasoconstrictor. Are you wearing a portable halter monitor that you can upload? |
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Title: Re: DHE therapy Post by Brewcrew on Oct 10th, 2007, 11:27am P.S. - How you feeling, Ray? |
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Title: Re: DHE therapy Post by Lizzie2 on Oct 10th, 2007, 11:50am Are they premedicating with anything? Reglan? Anything? I can only tolerate half the dose or else it makes me puke instantly. Even with the IM injections, it's that way for me. My former neuro would allow it to be reconstituted in a bag of saline and given over 15 minutes, but my current neuro feels it doesn't work as well that way, so let's just say I puke a lot more when it's pushed. I've never felt that it burns, but that's just me! With the migranal at night, do make sure that you don't sniff it up your nose and swallow it. (Gross, sorry!) It must be absorbed by the lining of the nose to be effective. This is the main reason why migranal fails for most people. I've received DHE many times IV - both inpatient and in the outpatient infusion center (at Jefferson - I'd go in for 8 hours a day for 3 days each and receive a myriad of IV treatments - but certainly could not drive home after any of them!), and it's gotten me various amounts of success. I've always had better success with it for my CH than for my chronic migraine, and after I went to the infusion center in April, I had about 4 months of reduced hits, which was wonderful!! Best of luck, and I hope it works for you!! Let us know how it's going!! Hugz, Carrie :) |
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Title: Re: DHE therapy Post by Ray on Oct 10th, 2007, 1:48pm Hello Everyone: Thank youfor your concern, I am fine. I was a little sleepy from the Phenerergan which was the anti-emetic. The Phenergan and the DHE pushes were both diluted by saline. I have no portable heart monitor, but I was checked vigorously during the slow pushes. I am taking it easy, and not doing anything more strenuous than typing at the computer or driving back to the hospital (10 mins). Ray |
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Title: Re: DHE therapy Post by Ray on Oct 10th, 2007, 11:21pm I survived the 2nd treatment too. Using Migranol now prior to bed. 8 AM appt. tomorrow morning. A bit beat from the treatments and the vein is sore from the pushes. All in all, not too bad. PF wishes for you all, Ray |
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Title: Re: DHE therapy Post by sandie99 on Oct 11th, 2007, 4:51am I only just read this thread. Lots of luck, Ray! I hope it works well! :) Hugs & PF wishes, Sanna |
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Title: Re: DHE therapy Post by Miz_D on Oct 11th, 2007, 6:41am Hi Ray, Just wanted to say good luck to you and hope that the treatment gives you a much needed rest... :) |
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Title: Re: DHE therapy Post by Ray on Oct 11th, 2007, 1:34pm Hello everyone: Once again, I had a treatment and survived. They have moved the IV port to the other arm, the first site was reddened. I don't think that it ruptured the vein, rather it got irritated. I go back in a couple of hours for another treatment. They are giving me a lot of attention and taking their time with me. Thank you all for your kind wishes! Ray |
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Title: Re: DHE therapy Post by E-Double on Oct 11th, 2007, 1:49pm warm compress.........wonders ;) |
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Title: Re: DHE therapy Post by Ray on Oct 11th, 2007, 2:46pm E-Dub: Doing that, it does seem to help! Thanks for the tip. Ray |
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Title: Re: DHE therapy Post by Lizzie2 on Oct 11th, 2007, 3:10pm I agree with Ex2...warm compresses!! The times I got phlebitis (irritation of the vein from strong/caustic meds), I always put warm compresses on it and it helped a lot!! Glad they are taking their time with you and giving you lots of care/attention - that's what every patient deserves!! The question of the day is.....has it helped? Are you still getting hit? If so, any lessening in frequency/duration/severity? Hope it continues to go well!! Hugz, Carrie :) |
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Title: Re: DHE therapy Post by Ray on Oct 11th, 2007, 7:19pm Hello Carrie and everyone: Since about 4 AM on the 10th I have had no headaches. The veins are sore. I'm dragging a bit from the phenergan, but all in all, not bad. Gotta go pick up some teenagers, so I'll keep this short. PF wishes, Ray |
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Title: Re: DHE therapy Post by E-Double on Oct 11th, 2007, 7:33pm [smiley=thumb.gif] |
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Title: Re: DHE therapy Post by artonio7 on Oct 11th, 2007, 8:35pm Glad to hear that you're getting some relief Ray... you've been on my mind and in my prayers. with warm regards, Tony |
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Title: Re: DHE therapy Post by Lizzie2 on Oct 11th, 2007, 9:09pm Glad to hear it, Ray!! Hope that it continues!! :) |
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Title: Re: DHE therapy Post by rolo65 on Oct 11th, 2007, 9:36pm on 10/10/07 at 11:27:12, Brewcrew wrote:
I have done a lot of DHE, and if the lithium fails I have 40 ampoules in the stash waiting for me just if I need it. I tried a vile of trex the other day when I forgot the lithium and it did nothing. O2 to the rescue! :) The DHE never messed with my heart (trex & maxalt did), even when I did the pick line thing (that’s a tube that goes in your arm and feeds up the artery into your chest) three times a day. If you push it too fast it shrinks the arteries in your legs and it hurts like hell to move them for a while, about an hour. Edit to add: If you have a heart condition (blockage) I’m sure the DHE would be a in patient thing per your doctor. Praying it sets you in the clear for a while! Regards, Roland. ;) |
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Title: Re: DHE therapy Post by Ray on Oct 11th, 2007, 11:00pm Thank you all. Tomorrow is day 3 of 3. Again, the only negatives so far are being a bit shagged out and the veins are sore from the meds being pushed slowly. Hot compresses seem to relieve it for a good while, but I can't keep them up 24/7, obviously. Keep the prayers coming folks. Thanks for tuning in. With PF wishes, Ray |
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Title: Re: DHE therapy Post by artonio7 on Oct 12th, 2007, 10:50am waiting to hear how day 3 is going... sending out more prayers. with warm regards, Tony |
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Title: Re: DHE therapy Post by midwestbeth on Oct 12th, 2007, 12:34pm Ray, Glad to hear you have got some pf time. Praying that day 3 goes well and the beast stays away!! Beth |
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Title: Re: DHE therapy Post by Ray on Oct 12th, 2007, 3:03pm Hello Clustervillians: This morning went well. The vein where the port is attached does hurt like heck, but it is still providing a good return flow of blood and will probably be used again later this afternoon. I will be glad when this series is over. Still CH free, but still groggy when I get home. The Migranol I took during the past 2 nights is very congesting and makes it hard to breathe through my nose. All in all, it's better than the CH! Ray |
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Title: Re: DHE therapy Post by Lizzie2 on Oct 12th, 2007, 5:46pm You know, I was thinking about this - it is probably the phenergan more than the DHE that is burning your veins!! I know others have reported that DHE burned, but I cannot recall it burning as badly as you are describing. The phenergan, on the other hand - every single time I received a dose of it IV, my vein would blow and they'd have to find a new site. That stuff is extroardinarily caustic to veins. I bet that is what is causing it to hurt so much! I would still suggest a warm compress. The phenergan is also probably what is making you groggy as DHE really doesn't have that effect. I hope that the PF effect holds out for you for more than these 3 days to make it worth it! Though in my opinion, I have always felt that even if I'm only PF during the days of treatment, at least that is better than never having been PF at all! Hugz, Carrie :) |
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Title: Re: DHE therapy Post by E-Double on Oct 12th, 2007, 5:53pm on the right path me brother ;) and yes...stick to warm compresses and massage the area. |
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Title: Re: DHE therapy Post by Ray on Oct 12th, 2007, 6:09pm Hello again everyone: I finished my third day of IV DHE. The port hurt too much with just saline, so they moved it. The IV nurse agreed that it was probably the phenergan that hurt, and was diluting it 20:1 with saline. This time, there was very little pain and I'm still CH free. I hope it lasts. I am to use one more Migranal NS spray tonight and then just keep on cruising. Thanks for keeping up with me and giving me the encouragement. Wishing you PF days and nights, Ray |
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Title: Re: DHE therapy Post by cash5542 on Oct 12th, 2007, 6:45pm Glad to know things are going well and giving you some relief! I've been thinking of you all week! I hope you continue with the steady progress!! Charlotte |
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Title: Re: DHE therapy Post by Ree on Oct 12th, 2007, 8:42pm Hi Ray Im just seeing this post... I hope you are still doing well... Dave had DHE about 9 years ago when he had one of his worst cycles ever. He stayed in the hospital for about a week and the house doc administered the DHE... funny thing is that they watched him like a clock like he was going to blow up... But I think that was back in the first days of DHE treatment. He did well with that treatment I remember and it did stop his cycle... I remember he got hit one good one after a few days of no DHE and then nothing after that. That was after 7 month straight with no relief... Good luck buddy.. love ya Ree |
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Title: Re: DHE therapy Post by Ray on Oct 13th, 2007, 8:43pm Hello Clusterville: I'm not intending to turn this into a personal blog, but a brief summary of the day.... My veins still hurt, bruises are changing colors like autumn leaves, and still no CH. My energy level is down, this therapy is hard on this 49 y/o body. I've taken a walk, taken a mini-van full of teenagers to visit the grave of another teenager who accidentally OD'd one year ago, done laundry and decided that I don't wish to be depressed any more. It's a conscious decision, but it's not so simple. I appreciate all of the prayers and words of encouragement, please don't stop. I, for one, do believe in the power of prayer -- I pray for all of us here daily. This board, and the people who are here, are the best therapy for me. Occasionally I even get to do something good for someone else. I love you guys, even the stinkers (and you DO know who you are!). PF wishes for you all, Ray (corrected a typo) |
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Title: Re: DHE therapy Post by sandie99 on Oct 14th, 2007, 6:10am Ray, prayers are on their way. :) Lots of PF time, Sanna |
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Title: Re: DHE therapy Post by bgage on Oct 16th, 2007, 7:44pm I've done both in-patient treatment as well as outpatient three day treatment. In Nov. of 2006 I was hospitalized in Raleigh NC for a full ten day treatment. It lasted nearly ten months. This was the longest pain free period in years. My Clusters returned in Sept. Fall? Last week I went in Raleigh Neurology for the 3 day Infusion DHE, Benadryl, Toradol drip. I did this as an outpatient. So far so good. I was also given Migranal NS (DHE) for home use. I also ALWAYS have O2 at hand. Good Luck. My first experience was very effective. And believe me I've been all over the map on treatments and this seemed to last the longest. Ral. NC |
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Title: Re: DHE therapy Post by Ray on Oct 16th, 2007, 9:01pm Thank you for your comments bgage. I am having some light shadows during the day and 1-2 night time hits, but easy ones. They go away within 5 minutes with O2. PF wishes Ray |
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Title: Re: DHE therapy Post by Ray on Oct 19th, 2007, 11:11pm I'm still having a few hits. I used Imitrex yesterday, for the first time in 2 weeks. No night time hits last night. The beast is not gone, but is taking it easier on me so far. Ray |
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Title: Re: DHE therapy Post by E-Double on Oct 20th, 2007, 5:52am sorry brother for the breakthroughs but it does seem that overall better than it was. try to stay off the trex if ya can (jmho) I'm in the same boat but can honestly say that despite it still being there, i can not complain whatsoever. mostly pf. hope it is a long stretch for you and may the o2 tank start looking like dusty furniture ;) |
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Title: Re: DHE therapy Post by phil_h on Oct 20th, 2007, 7:22am May you guys have all the success with this tx that I did not............ I know that most stuff that doesn't work for me , is very effective for others......... I pray you may find relief and pfdan's.................. phil h |
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Title: Re: DHE therapy Post by DennisM1045 on Oct 20th, 2007, 8:45am Thanks for the update Ray. While I wish you were completely PF, I am glad to hear you are getting some relief. Also thanks for this thread. I've had a lot of questions about DHE and you have really taught me a lot about it. I hope your success continues. -Dennis- |
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Title: Re: DHE therapy Post by Ray on Oct 20th, 2007, 4:13pm Gentlefolks: I'm treasuring each PF moment. Thank you all for the best wishes. One thing I've learned about the beast in my 20+ years with him is that he's unpredictable. I try not to let him intrude in my life, yet he's always there, lurking in the background. It's a matter of perspective, I can worry about the next hit, or just be prepared and go on with life. I choose to be prepared and go on with life. There was a time, when he first appeared, that I would have tried about anything. I even did consult with a neurosurgeon about the nerve destructive process. Now I don't want Dr's doing intrusive proceedures. Dr's "godlike" judgements, egos, and skills have lost their luster IMHO. Thanks for following along, and please continue this thread if it has any merit for you all. With PF wishes, Ray |
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