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Topic: For the chronics out there.... (Read 634 times) |
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Garys_Girl
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For the chronics out there....
« on: Nov 6th, 2007, 10:18pm » |
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Apart from those using seeds or shrooms, what's your cocktail? And how successful is it?
...and if nothing works, what helps? (I know this sounds ridiculous, but how do you cope?)
Caffeine helps hubby, but hasn't been an option for months as he has so many GI problems.
02 will help when on it, but is now causing rebounds.
He's been through the meds, and is now detoxing from narcotics - which helped give some relief (at least a short break) at first.
But we're going to have to start over again. He may try busting again, but I'm wondering what else has worked for those still fighting the beast that won't leave....
Thanking you for your input and wishing you all PFDAN,
Laurie
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| « Last Edit: Nov 6th, 2007, 10:19pm by Garys_Girl » |
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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EstieSA
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Re: For the chronics out there....
« Reply #1 on: Nov 7th, 2007, 4:45am » |
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I wish I knew !
I'm on a steriod taper currently, whilst ramping off Neurontin & onto Topamax .
I've run out of meds as well and cannot do the alternative because of other meds, and 02 no longer helps 
Only option now is to start riiiggght at the beginning (meds wise) and try increased doses...
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Bob_Johnson
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Re: For the chronics out there....
« Reply #2 on: Nov 7th, 2007, 1:24pm » |
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Eur J Neurol. 2007 Jun;14(6):694-6.
The use of gabapentin in chronic cluster headache patients refractory to first-line therapy.
Schuh-Hofer S, Israel H, Neeb L, Reuter U, Arnold G.
Department of Neurology, Charité-Universitätsmedizin Berlin, Berlin, Germany.sigrid.schuh-hofer@gmx.net
Chronic cluster headache (CCH) is a rare but challenging condition. About 20% of CCH patients get refractory to treatment. Gabapentin has recently been reported to be efficacious in the treatment of CCH. To test the potential of gabapentin as second-line drug, we prospectively studied the efficacy of gabapentin as add-on drug in eight patients suffering from CCH refractory to first-line treatment. Six of eight CCH patients responded to treatment. After the end of the study phase, the patients' clinical course was further followed up until January 2006. The longest period of being continuously pain-free under gabapentin treatment was 18 months. In some individuals, increasing doses were needed with time. We conclude that gabapentin may be offered as treatment trial in patients refractory to first-line treatment. However, patients may fail to respond to treatment and drug tolerance may occur with time.
PMID: 17539953 [PubMed]
------
Lithium also effective for Chronic CH.
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Bob Johnson
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Guiseppi
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Re: For the chronics out there....
« Reply #3 on: Nov 7th, 2007, 1:46pm » |
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Jonny was chronic forever and lithium worked very well for him. I'm episodic and lithium has been my miracle drug when I'm on cycle. I'm male, 47, weigh about 190, use 1200 mg a day when on cycle.
I posted this in response to a different thread. I'm one of the exceptions in that the CH returns for me within 20 minutes of shutting of the 02. I find if I take 1-2 cafergot when I start the oxygen I stay pain free up to 12 hours.
I'm in law enforcement so I haven't been able to try a lot of the "alternative" therapies. Fortunately for me the combo of oxygen, lithium, cafergot and the occasional imitrex jab has allowed me to keep my career, marriage and sanity!
Thanks again for going to the lengths you have gone to being a supporter. I know we can be a major pain in the butt at times!  Just ask my poor wife!!
Guiseppi
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Garys_Girl
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Re: For the chronics out there....
« Reply #4 on: Nov 7th, 2007, 4:10pm » |
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I've read in several posts now that lithium has helped the chronic sufferer.
As to the gabapentin, we've tried Lyrica (a more modern version). I don't know dose equivalents between Lyrica and gabapentin, but maybe Gary just wasn't on enough Lyrica - he was on 200mg at night and 100mg in the morning.
For others it didn't seem to do much except make them sleepy. Unfortunately, it didn't even do that for Gary.
But he's detoxing off of narcotics (prescription) right now. They afforded a few weeks of (much-needed) relief. They didn't stop the pain, but they made it more tolerable, at least for a while. But with his tolerances rolling through the ceiling, he's decided they're not worth continuing (even though he knew from the Boards that would be the case going into it).
So it's going to be a rough couple of weeks. He's been having so many problems with his GI system we're going to concentrate on the diet for a while and then start over with the CH.
Seems like the lithium might be worth a shot.
Again, thanks for the input, and wishing you all PFDAN,
Laurie
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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Daddyg
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Re: For the chronics out there....
« Reply #5 on: Nov 9th, 2007, 12:13am » |
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I've been a chronic now for 10+ years. Found this site about 2 years into them. Been so long since I logged in, my username was no longer good; I'm certain it's the correct username, as it's kept in an encrypted file. Oh well..I've re-registered.
I'm at a KIP 5-6 daily, once or twice during the day, sometimes in the middle of the night. Just got done with an 8 that lasted 90 min. They do that at least a couple times a week. Thankfully...they haven't gotten beyond that in a few years. I had 2-3 years where I got 9-10s 2-3 times a week. It was hell.
Use O2 when I can, and it's effective. Believe it or not, "Exedrin PM" tends to prevent them in the middle of the night. I think it's the Benedryl in it. I've been on Neurontin, Lyrica, Verapamil, and maybe another; too many to remember already. They all either ceased to work after awhile, or made me so sick 3 mos. into the treatment that I had to get off it. I REFUSE to go on lithium...just won't do it. That is some NASTY stuff with too many long term complications. Both my wife and I have medical backgrounds and she's a neuro nurse. Taking lithium is NOT a decision to make lightly.
I've done accupuncture, "atlas manipulation", and other physical therapy/chiropractic type treatments. Some helped somewhat, others not at all. I've even been treated by an MD/Neuropath that did both cranial manipulation and treatment with different type of lenses in my glasses, as my L eye (always has been L sided pain) feels like it goes into spasm, tears, and burns like someone's sticking a hot poker in it. In the end...it didn't help much.
I did a regiment of shrooms. They seemed to help, but they ran out awhile back. Seemed like I got a couple weeks of PF time with them at a stretch. Probably wasted half of them taking too little. Seems they only really had an effect on the CH when I took enough to get pretty buzzed. I don't much care for the buzz though. I've got another batch...but have been reluctant to take them again. Maybe I will.
Right now, it's only O2 and Vicodin; finally convinced the doc that when doing O2 is not an option (carrying a tank to a restaurant/social event just isn't something I'd do) I needed SOMETHING to get through it. Got to take them almost immediately once I get the twinge....then I only have to bear 30 min. till they kick in. I use them sparingly...and they dull the pain, not take it away.
I've grown used to excusing myself and flailing away out of sight of others. My family understands, but it doesn't make it any easier. Most freinds/co-workers understand I "get headaches", but that doesn't make me any more comfortable when I have to beg off, or slip away from an activity for an hour whilst I thrash about.
I've posted to this board maybe a handful of times in the last 8-9 years I've been frequenting it. Guess I did so tonight cause I just came out of one. I come here occasionally ( every 6 mos. or so) to see if there's anything new I haven't tried. Trying something new at least gives you some hope that you may find something that works. I've not found that magic bullet yet.
I hope your hubby finds something that works.
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Ray
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Re: For the chronics out there....
« Reply #6 on: Nov 10th, 2007, 3:51am » |
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I'm a chronic clusterhead since the first one, for 20+ years. I'm still getting a break (sort of) by having a series of DHE infusions at the hospital. PM me for some more information, I'd be glad to share. If you scroll back a page or so here in this forum, you'll find a thread that I started back on Oct 5th, titled "DHE therapy" where I discussed how this worked for me.
I'm still having some headaches, mostly not as severe, and certainly not as frequent. Some days no hits at all. I was having about 8 hits a day, right when I opted for this therapy. It saved me a lot of pain.
With regards,
Ray
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| « Last Edit: Nov 10th, 2007, 3:59am by Ray » |
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
http://www.myspace.com/rayplace
http://www.shadesgarden.com
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Garys_Girl
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Re: For the chronics out there....
« Reply #7 on: Nov 13th, 2007, 9:10pm » |
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Daddyg, thanks for sharing. I'm sorry it was the pain that drove you here. And we're all looking for that magic bullet! I hope you find yours.
As to the buzz from the shrooms, if you're ever willing to try them again (since they seemed to provide some relief), the best thing to do is clean the house the day before, unplug the phones, make sure you'll be alone (or with those who know what you're up to - if you have kids, send them to friends for the day/night), and have a line-up of pleasant movies, music DVDs or music lined up. Classical music of the "happy" kind works really well to help you have a good trip. Being children of the 60s and 70s, we prefer classic rock. About 6 - 7 hours after taking the dose, it's good to eat some carbs and fruit, and a shower will help bring you down. Don't spend any time "thinking" about anything, don't try to accomplish anything, and don't spend any time in front of a mirror.
I think being properly prepared for the trip that comes with the dose is important to the therapy - it helps people like you who don't like the buzz tolerate it so you can continue with it if it's working.
Ray:
Hubby was in the hospital for a DHE drip the third week of June. Even though they administered the regalan, he began violently vomiting. He stuck it out for 2 1/2 days. They went to suppository anti-emetics. They tried everything. It flipped some switch in his head, and he lost 30 pounds in six weeks. Water would make him vomit, and keeping him hydrated was a real problem.
Even now, in November, a good day is when he "only" vomits 3 times a day. A bad day is 40+ times. A normal day is 10 - 15 times. His throat, tongue and teeth were being eaten away by acid. We've had to get him a special toothpaste and calcium application. Unfortunately, he usually vomits at night, so he ends up losing the calcium application.
So add chronic vomiting to the list of problems - and the administration of the DHE seemed to somehow trigger it. The high point of my day is when hubby gets a K9 hit and has to run to the bathroom to vomit, and is so sick all he can do is roll around and smash his head on the tile floor. The real bitch is that he can't have the O2 mask on when he's getting sick.
So unfortunately the DHE drip did not work for him, and he won't be giving it another try.
I'm glad it worked for you and for so many.
Laurie
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| « Last Edit: Nov 13th, 2007, 9:14pm by Garys_Girl » |
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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bea1
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Re: For the chronics out there....
« Reply #8 on: Nov 15th, 2007, 1:37am » |
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I have been Chronic for 14 years. Tried most everything.
Sansert worked good for me till I got fibroid growth in my chest. Couldnt get Sansert in USA anymore either. Could still get from Canada but had to stop anyway.
I have been using Daily bedtime 1ml injections of DHE for almost a year now. Works pretty good. I test every once in awhile and headaches usually come back on second day.. Once I went 5 days without HA and shot.
I also take lithium verapamil, and citalopram, none of which I believe really help. Should just quit them I think.
Pulmonary specialist doesnt like me on the DHE because he believes it potentially has some similar side effects as Sansert. He wants another CAT Scan of my chest but have been putting off. Maybe after Holidays.
Anyway, Sansert and DHE injections work for me. Imitrex does nothing.
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Garys_Girl
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Re: For the chronics out there....
« Reply #9 on: Nov 15th, 2007, 9:53am » |
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Beal - have you tried busting with shrooms? If the sansert works for you, the shrooms should as well - but without any of the medical side effects. For many, low doses work, so the "buzz" side effects are often minimal.
Just a thought,
Laurie
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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Kirk
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Re: For the chronics out there....
« Reply #10 on: Nov 15th, 2007, 11:20pm » |
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I've had these damn things since May 69. And been chronic since March of 2000.
Because of my health I can't take Trex or Verap anymore. But I'm having good results with 100 Mg. Topamax/day and O2.
Please be well 
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