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(Message started by: marty on Apr 7th, 2003, 8:58am)
Title: There ain't no magic pill..
Post by marty on Apr 7th, 2003, 8:58am
Hi Ya'll..

I have not been on here much lately since I am trying to give as much time as possible to CalOUCH but I thought that I would give you an up-date on Jill and ask a few questions at the same time.

In a couple of hours Jill and I are leaving for Santa Monica Encino to see Dr Kudrow. I have come to understand that this is the Brother of Lisa Kudrow and that the "original" Dr Kudrow is retired. Jill does have hopes for this visit and I am trying to keep her from believing and hoping to much since there is no "Magic Pill".

Question for Roxy, Jonny and others that deal with CH "fulltime":  Do you find that there are "cycles" even for chronics? The reason I am asking is that Jill went almost one month without having to go to the ER, but last week that changed and now we are visiting the ER every other day.  

Jill is holding up good, I am frustrated in general and the Dr's and Nurses have come to know us real well.  A couple of days back, I left for work - had Jill with me and dropped her off at the ER with a "perfect K-10". Dr's and nurses said: "Hi, is she getting hit again.. Diladin? right..".  I left her there, went to work, held Line-up, got in my patrol car, drove to the Er, picked a PF - but drugged Jill up and took her home (trying to keep her from playing with the siren and lights) and continued my shift.. and so it goes on, one day at a time but I have no doubt.. WE WILL BEAT THIS SOB.

By the way, Jill has a new web site (I am not promoting here, just for informational purposes and that I am very proud of her work). The web site may not be very proffessional since I am building it and I have no clue as to what I am doing (really)..  So suggestions are welcome (I need all the help I can get ;D).

http://onlinebeyondimagination.com

Marty
Title: Re: There ain't no magic pill..
Post by catlind on Apr 7th, 2003, 9:05am
First suggestion Marty, ADD NO RIGHT CLICK CODE!!!
To protect Jills work, add the code so the average joe can't right click and steal the pics.  Anyone who is experience with java will know how to get around that, but most of those people aren't that interested in photographs on the web.

That is some fabulous work!  If you would like to see a similar website for ideas you can check out www.photoamerica-stockgallery.com.
(not trying to push anything either)

You are a real trooper Marty, in more ways than one.

Cat

p.s. what is diladin?  I can't get any results for it on rxlist.
Title: Re: There ain't no magic pill..
Post by marty on Apr 7th, 2003, 9:21am
Thanks Catlind..

How do I do that??   ???  I guess that I will have to figure it out somehow..  Good idea :D

Diladin.. I may have spelled it wrong but it is a narcotic of some kind.

Marty
Title: Re: There ain't no magic pill..
Post by catlind on Apr 7th, 2003, 9:53am
Marty, I've emailed you a couple of code snippets that you can use for the no right click :)

Cat

Searched google for diladin... oy oy oy:
CzechWives amateur porn photos and videos {wajyjydo}

That was the only result that came up LOL
Title: Re: There ain't no magic pill..
Post by Roxy on Apr 7th, 2003, 11:30am

on 04/07/03 at 08:58:08, marty wrote:
 Do you find that there are "cycles" even for chronics? The reason I am asking is that Jill went almost one month without having to go to the ER, but last week that changed and now we are visiting the ER every other day.


Marty, I think that there are 'cycles' for chronics.  I can go a couple of weeks, with just the normal 2-3 hits a day, then start an ungodly cycle where I just get hammered with anywhere from 6-9, bad ones, a day.  I'm dealing with some bad shadows right now, which is a relatively new thing for me.  I think the shadows may even have their own little cycles.

Glad ya'll are going to the neuro, hope he can help Jill.  I know how frustrating it must be for you, but hang in there.....you're tough!

Really like the website too, great work!  I think you are doing a wonderful job.

Tracey
Title: Re: There ain't no magic pill..
Post by maggie_may on Apr 7th, 2003, 12:02pm
Marty,

Good luck to you and Jill with Dr. Kudrow.  Sorry I can't help with the chronic questions.

I can help with the javascript, though.  I sent the code to you in your email as an attachment txt file as I don't know how to post it to an already-existing website without screwing it up.

Great site the two of you have up and running  :)

maggie


OOPS... I didn't see that Cat already sent you code.  You have mine now too  ::)
Title: Re: There ain't no magic pill..
Post by don on Apr 7th, 2003, 12:52pm
The opiate family includes Heroin, Black Tar Heroin, China White, Oxycontin, Dilaudid, Buprenex, Percocet, Percodan, Lorcet, Codeine, Hycodan, Demorol, Opium, Methadone, Dolphine and many other prescription pain killers. Heroin, in particular, has made a dangerous comeback, appearing recently in very pure forms that often are ingested through sniffing or smoking. Heroin and other narcotics are extremely addictive. They are physically addictive therefore producing a quick dependence that renders the user a slave to the drug. Once physically dependent, the addict will have to endure a retching sickness when the drug is not present. This sickness manifests itself in excessive sweating, vomiting, insomnia, constant yawning, racing thoughts etc. This withdrawal phenomenon usually occurs about ten hours after the addict's last use. Many addicts who would otherwise abandon their opiate "habits" continue using for fear of this ugly withdrawal. Please know that there are reasonably comfortable ways to stop opiates. At Summer House we have produce effective results when employing our Narcotic Reduction Detox.


Wouldn't go there if I were you.

Super website.......and.............

Can you fix my speeding ticket.
Title: Re: There ain't no magic pill..
Post by Mikey on Apr 7th, 2003, 12:52pm
Cat, the correct spelling for what you are looking for is Dilaudid. It is a narcotic a derivative of Morphine.

Marty, I'm chronic, and have been for 5 of my 8 yrs of CH. and the answer to your question is yes.  Most chronics have cycles in cycles sometimes, a very hard thing to explain. The beast is there all the time, what i mean by that, it's there everyday. It has certain times of the year when it is worse than others, and then inside of that you have ups and downs. More unpredictable than episodic. you might go 4 months where you never have one above an kip 6 and then you might go 3 months of atleast an kip 10 once a day ect..ect.. and all different strenths of shadows in between and around and around we go day after day, week after week, month after month and year after year. Some gets breaks from time to time and others never do.

I hope that helped and did'nt confuse you, i'm not the worlds best at explanations.

Mikey,  ;D

BTW: Marty, Jill  beautiful web site!
Title: Re: There ain't no magic pill..
Post by Mikey on Apr 7th, 2003, 12:57pm
Don, did'nt realize you were posting as i was posting, you're explanation of Dilaudid of course is much better than mine.

Mikey,  ;D
Title: Re: There ain't no magic pill..
Post by catlind on Apr 7th, 2003, 1:42pm
Thanks for the info on the dilaudin.  I had found it on a hospice site for cancer patients.  Not to fear Don, it most certainly is not something I am interested in, but there is a steroid IM shot I've been given in the ER and I can't remember the name of it other than it starts with a D and has been fairly effective.  

Whenever I see a medication listed I haven't heard of I usually head straight for rxlist to look it up in case it's a viable option for treatment :)

Cat
Title: Re: There ain't no magic pill..
Post by jonny on Apr 7th, 2003, 3:10pm
Yup.

...............................jonny
Title: Re: There ain't no magic pill..
Post by don on Apr 7th, 2003, 3:51pm
The steroid injection is DHE.
Title: Re: There ain't no magic pill..
Post by marty on Apr 7th, 2003, 11:43pm
Thanks all..

Let's make this a little bit more specific.  DHE has been tried and it did not do anything for Jill. The list of meds is a long one and so far, none has worked. Some will help for a little bit (days) but then there is nothing.

I know about the risks with drugs that causes dependancy (worked narcotics for a number of years), but here is the question (I know that there is no answer and since you all know my views on illegal drugs like shrooms, I guess that I am "sticking my chin out" here):

Would a dependancy take presidence over a total mental collapse leading to finale actions by a CH sufferer?

I don't know that answer to this, but I keep wondering.. Is there a limit for how much a person can take, is there a place and time when this decision has to be made, including the risk calculation involved, leaving the issue of dependancy to be dealt with as a seperate issue after the pain has been dealt with?

There is of course the issue of "re-bound" but in my way of thinking, there will be a specific and detailed issue to treat caused by a specific action - that of dependancy on a specific drug - not on a undetermined basis for CH. Now, this theory will only work if the person "cycles" out..

I know that this post is not typical for me, but I would like to hear your views and I do value your points and comments very much.

Marty  
Title: Re: There ain't no magic pill..
Post by Callico_Kid on Apr 8th, 2003, 12:22am
Great site!  I just added it to my favorites list so I'll remember how to find it and watch as you complete it.

You both will be in our prayers.  Both for Jill's HAs and for your work.  I appreciate the job those of you in law enforcement do for us.

jc
Title: Re: There ain't no magic pill..
Post by catlind on Apr 8th, 2003, 6:39am
Marty,  narcotics are always a difficult decision.  There are many folks here that have not been able to find relief any other way.  When I was trying to find out what dilaudid was, I found this piece on a hospice site, and thought it was very well written.  I am not advocating the use of narcotics as a first line treatment, or even second for that matter.  The dangers are very real but the benefits certainly are there for those who have no other option left.

The article refers to cancer patients, but I think it can apply to any debilitating unresolved pain.  The key I believe is to work very closely with a physician in the management of the medication.

Cat

Will I Become Addicted if I Use Narcotics for Pain Relief?
No. Narcotic addiction is defined as dependence on the regular use of narcotics to satisfy physical, emotional, and psychological needs rather than for medical reasons. Pain relief is a medical reason for taking narcotics. Therefore, if you take narcotics to relieve your pain, you are not an “addict,” no matter how much or how often you take narcotic medicines. If you and your doctor decide that narcotics are a proper choice for your pain relief, use them as directed. Addiction is a very common fear of people who take narcotics for pain relief. Narcotic addiction is an emotionally charged subject. You may hear people use the term “addiction” very loosely without understanding exactly what it means - the compulsive use of habit-forming drugs for their pleasurable effects. Drug addiction in cancer patients is rare. Generally, when narcotics are used under proper medical supervision the chance of addiction is very small. Most patients who take narcotics for pain relief can stop taking these drugs if their pain can be controlled by other means. It is important to remember that if narcotics are the only effective way to relieve pain, the patient’s comfort is more important than any possibility of addiction. If you take narcotics for several weeks or more, be prepared for someone to express a concern about addiction. Most people with prolonged pain who take narcotics have faced this problem. Remind yourself that other people’s concerns about addiction are often due to lack of information. If you have concerns about addiction, share them with those who are caring for you. These fears should not prevent you from using narcotics to effectively relieve your pain.
Title: Re: There ain't no magic pill..
Post by Mark C on Apr 8th, 2003, 7:56am
Great website Marty,
I will share my personal experience because that is all I really have to offer. I suffer from Clusterheadachs. I also suffer from the disease of addiction. I have been clean from all recreational drugs from quite a few years now. During my "active" phase I have done every drug known  to man or beast. I have had unrestricted access to enough narcotics to kill myself many times over. Only by the Grace of God that I have not died. Most who ever reach the level I did die.

That being said I have also tried to "self-medicate" my CH away. In my younger years, mis-diagnosed, many drugs in vast quantites were tried...in vain. I personally have never had relief from CH by using narcotics. I could reach unconscious which has been a welcome relief.

I believe if relief can be achieved from narcotics by all means seek relief. You won't know till ya try. Detox is quite rough and recovery from chemical dependancy is a lifelong process but nothing hurts like a visit from the beast so as far I am concerned if relief can be found from ANY souce it should be investigated.

PFDAN's
Mark
Title: Re: There ain't no magic pill..
Post by sailpappy on Apr 8th, 2003, 8:18am
;D ;D Marty,
    I wrote you off line, but I wanted to point out that some of the Drug information in this thread is incorrect and before posting any meication information one should really check out what they are talking about!
     D.H.E. 45  injections are not steroide's this drug is a vascular constrictor and available in a nasal spray as well,
     A very good place to check out any Drug is on www.HealthSquare.com  they have everything listed in alphabetical order and you can get very good basic information from them, not as detailed as a pure PDR or you can go to the manufacturers website to get the clinical trials information and the precaustions for each individual drug in question.
                                           Pappy

http://www.gifs.net/animate/sungulls.gif
http://www.gifs.net/animate/sailboat.gif
Title: Re: There ain't no magic pill..
Post by K. on Apr 8th, 2003, 11:33am
[quote author=sailpappy link=board=general;num=1049723890;start=0#16 date=04/08/03 at 08:18:16] ;D ;D Marty,
    I wrote you off line, but I wanted to point out that some of the Drug information in this thread is incorrect and before posting any meication information one should really check out what they are talking about!
     D.H.E. 45  ionjections are not steroide's this drug is a vascular constrictor and available in a nasal spray as well,
     A very good place to check out any Drug is on www.HealthSquare.com  they have everything listed in alphabetical order and you can get very good basic information from them, not as detailed as a pure PDR or you can go to the manufacturers website to get the clinical trials information and the precaustions for each individual drug in question.[quote]

Thanks Pappy, I noticed that and was going to post too.

DHE (dihydroergotamine mesylate)

Before "triptans" the docs used to prescribe ergotamine drugs a lot more than they do now. I'm sure a lot of you remember ergostat or wigraine.....you'd place it under your tongue to be absorbed. It is a vasoconstrictor.

DHE is the injectable and Nasal spray type of this drug that is used for migraine and cluster headaches.

I'm no doc but just happen to know a little about this particular drug.

Karen
Title: Re: There ain't no magic pill..
Post by don on Apr 8th, 2003, 12:24pm
My mistake on the DHE.


Quote:
before posting any meication information one should really check out what they are talking about!  


Normally I do.

The only way DHE has been affective for me is through an IV drip. Stopeed a 9 moth cycle cold. Self injections did nothing.
Title: Re: There ain't no magic pill..
Post by brain_cramps on Apr 8th, 2003, 2:39pm

on 04/08/03 at 12:24:04, don wrote:
a 9 moth cycle


WOW!!!   sounds pretty scary!!!  ;)

grant   ;D ;D ;D ;D ;D
Title: Re: There ain't no magic pill..
Post by Jill on Apr 8th, 2003, 7:36pm
I just wanted to add my thoughts to this thread and bring it back up to the top because I am curious as to what others have to say...

The questions asked are ones that I have been thinking about so much lately, especially today. For me, it seems that I am in a rut and there is no easy way out - if there is a way out at all. I have been chronic for almost fourteen months now - not too long to some of you - and have been hit so hard that it is unjust. After trying ever med that doctors seem to know of for clusters plus all of these alternative therapies - where else do you go?

When it comes to ideas on how to relieve the pain there has to be away to determine what to try and when. When all conventional medications have failed, then how do you determine what else to do?

If it came down to it, if a narcotic would bring some sort of relief - no matter if it would be complete relief or not - I would take it in a heartbeat. I would do it even if it left the risk or even guarentee that later down the road I would have to go through withdrawal of the medication. The risks are well worth it to me. Anyways, at some point, we need a time when we can 'heal' or atleast gain more strength to continue the fight before we collapse completely, right?  

The one question that has been bothering me is if there is a limit to how much a person can take before the final act is thought of. I guess that each person is different but overall - how many mornings can you wake up, after a night of fighting, with a cluster and realize that that hoping, praying, and wishing that you did the night before was for nothing because this day is going to be like all of the rest?

Personally, I dont have an answer or one that I want to admit to thinking because it is a scary question. But, overall - right now, I would do just about anything to find some sort of relief no matter what the consequence was - be it dependancy, the affects from surgery, whatever.

I hope that this makes sense and I would like to know how others feel about this issue.

Jill
Title: Re: There ain't no magic pill..
Post by TomM on Apr 9th, 2003, 7:43am

on 04/08/03 at 19:36:43, Jill wrote:
The one question that has been bothering me is if there is a limit to how much a person can take before the final act is thought of.
Are you talking suicide? You don't need suicide. We are here for you 24-7-365.
Have I thought of it? You bet! EFD. That's Every Frickin Day I'm in the throws of my cycle but the people here keep it real for you.
IMHO, I would stay away from narcotics. Have you looked into alternative methods? Ask PinkSharkMark or or others about the shroom treatment.
TomM
Title: Re: There ain't no magic pill..
Post by marty on Apr 9th, 2003, 1:36pm
Tom..

I would hate to have to arrest Jill.. ;D

Marty (the cop)

Seriously, I am against the use of illegal drugs, especially hallucinogenics. LSD, PCP, Shrooms and Peyote are very unpredictable and can lead to a very bad place.

I would support the use of Doctor prescribed narcotics because they are not only legal, but also given under medical supervision and with frequent follow-ups.

Marty
Title: Re: There ain't no magic pill..
Post by brain_cramps on Apr 9th, 2003, 1:42pm

on 04/09/03 at 13:36:58, marty wrote:
LSD, PCP, Shrooms and Peyote are very unpredictable and can lead to a very bad place.


Funny how such a diverse list of drugs can be pigeon-holed together like that.   Sure your not forgetting any?


on 04/09/03 at 13:36:58, marty wrote:
Seriously, I am against the use of illegal drugs, especially hallucinogenics.

I would support the use of Doctor prescribed narcotics because they are not only legal, but also given under medical supervision and with frequent follow-ups.


I also can't believe anyone would become addicted to shrooms at such a small dose  (ANY dose, for that matter).   Is a follow-up visit to the doc going to make 'Doctor prescribed narcotics' any less addictive?  ::)

grant    8)
Title: Re: There ain't no magic pill..
Post by Linda_Howell on Apr 9th, 2003, 2:12pm

  Jill,

    You asked us for our opinions on this matter with which you are faced.

          I think by now, everyone here knows how I feel about using narcotics for cluster pain.  I'm getting hit between 5 and 10 times  every single day right now,  and I won't use them.  But I know your history as well as anyone here and I know you're at the end of the line.

  Sooooo, my opinion is this.  If, after seeing Dr. Kudrow and he doesn't come up with something that will work to stop this cycle......then I'm with Marty.  Use the narcotics in a physician-controlled situation. Where you have follow-ups, etc.  

           LindaH
Title: Re: There ain't no magic pill..
Post by TomM on Apr 9th, 2003, 3:45pm
Marty--I hear you and I understand. That is why I personally do not prescribe to the shroom treatment. I just threw it out there as another idea that works for others.
And if you need to arrest Jill and handcuff her, all I would say is...have fun.  ;D
Hang in there and keep up the good support.  :)
TomM
Title: Re: There ain't no magic pill..
Post by marty on Apr 9th, 2003, 5:52pm

on 04/09/03 at 13:42:57, brain_cramps wrote:
Funny how such a diverse list of drugs can be pigeon-holed together like that.   Sure your not forgetting any?


Yes Grant, they are a diverse group, but they are all hallucinagenic drugs.. Different from Narcotics (opium based), different from amphetamines etc.


on 04/09/03 at 13:42:57, brain_cramps wrote:
I also can't believe anyone would become addicted to shrooms at such a small dose  (ANY dose, for that matter).   Is a follow-up visit to the doc going to make 'Doctor prescribed narcotics' any less addictive?  ::)


No, not at all. But there is one major difference..  Doctor prescribed medications are legal and more controlled then a substance that causes un-predictable effects at best. Further, use of a substance such as shrooms, may or may not have an effect on other prescription drugs that a person may be taking. The effect of the shrooms may be enhanced etc.. you just don't know until after you have used it - and then it may be to late.

I am one of those guys that does not buy the notion that certain substances are not addictive. There is no physical addiction connected with LSD, PCP, shrooms or Peyote but they have a tendency to build a phsycological dependancy. By this I mean that let's say that the shroom intake lessens the severity of an attack - the logical thing to do would be to use more when the next attack comes along and so forth, thereby causing a phsycological dependancy in those pre-disposed for dependancy. If used in a preventative fashion, then we really don't know how much is enough when the pain does not stop or decrease in severity.

Marty
Title: Re: There ain't no magic pill..
Post by brain_cramps on Apr 9th, 2003, 6:15pm
Marty:

I don't want to start an argument or anything like that, but I do have a couple of comments.


on 04/09/03 at 17:52:51, marty wrote:
The effect of the shrooms may be enhanced etc.. you just don't know until after you have used it - and then it may be to late.

WOW, that'd have to be a LOT of shrooms.    WAY more than the amount needed!


on 04/09/03 at 17:52:51, marty wrote:
There is no physical addiction connected with LSD, PCP, shrooms or Peyote but they have a tendency to build a phsycological dependancy.

I'd be a little wary if instead of shrooms, someone reccommended PCP.   (Are you sure its not addictive?)


on 04/09/03 at 17:52:51, marty wrote:
By this I mean that let's say that the shroom intake lessens the severity of an attack - the logical thing to do would be to use more when the next attack comes along and so forth, thereby causing a phsycological dependancy in those pre-disposed for dependancy.

I don't see any difference with narcotic addiction, other than the frequency that you use it.  (I've been there.)  That doesn't mean 'if one didn't work, how about 2, etc...'


on 04/09/03 at 17:52:51, marty wrote:
If used in a preventative fashion, then we really don't know how much is enough when the pain does not stop or decrease in severity.

Like with any med and CHs, there are no promises.  

Like a number of others here, I have been through narcotic addiction.  IT IS NOT FUN!!!   It is so easy to go down that 'slippery slope', but coming back up is a bitch.  It is only compounding an existing problem and is basically for nothing if it isn't effectively treating the headache.  If it is the last resort............

just a case of differing opinions.  thanks for hearing me out,
grant
Title: Re: There ain't no magic pill..
Post by marty on Apr 9th, 2003, 7:25pm
Thanks Grant..

This is so hard and finding a way, considering the alternatives makes it even more confusing. I may be wrong or I may be correct - either way it is frustrating and does not really solve anything. I just wanted to know what others had to say.

I really appreciate you input Grant.

Marty
Title: Re: There ain't no magic pill..
Post by TomM on Apr 10th, 2003, 6:35am
Thanx to Marty and Grant for keeping an open mind on this thread and not making any personal attacks.
I'm serious. Thank you. :)
TomM


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