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Jill
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Worse and worse....
« on: Apr 18th, 2003, 12:46pm » |
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Why is that just when you think that the pain of the clusters can not become any worse, they do? Just when you think that you cant be hit anymore often than you already are, you do? Just when you think that the pain of the last attack was the worst that you ever will feel, the next one or one later in the day is so much worse?
Over the last fourteen months, the frequency, the intensity and such has ranged from being as manageable (for lack of better word) as they can be to becomming so bad that without the help of dilaudid there is no telling what would have happened. For months I can go with having the clusters so that I think that they are finally going to go away (wishful thinking in a sense) and then suddenly it changes causing me to go months where I begin to think that if I get hit that bad once again, I will die. Why is that?
Right now, I am in the midst of those months and I have no idea what to do or how much more my mind and body are going to be able to handle. Since Sunday, I have been to the emergency room four times just to be pumped with dilaudid so that that hit will be aborted just to turn around a couple hours later and face the same problem.
I think that I am in one of the worst parts now - the time when you think that it cant get any worse but it does or can . At 14:30 yesterday afternoon I went to the ER and was given dilaudid, a phentynol (sp?) patch that lasts up to four days and some other medications. Then at about 6:30 this morning, I returned to the same emergency room to be pumped with even more dilaudid to ease the pain. This is getting ridiculous now and is way too much for both Marty and I.
I am not sure what to do at this point, what to try that I have not done before or whether I should just hope that it will end or slow down soon because I am totally worn down. I only get about an a half an hour to an hour reprieve between hits and I get anywhere from a half an hour to two hours (if I am lucky on the two hours) sleep each night and that just doesnt cut it. I have no energy to do anything and everyday I find it harder and harder to just complete the normal everyday tasks that need to be done.
I did see Dr. Kudrow on Monday and he has ordered me to get an MR Angiogram done but if that comes back normal - which I have a feeling it will - then and I quote that I 'have to learn to deal with it with the help of pain medications.' He said this not only from his view point but also in respect to other neurologists - basically that they would all come up with the same conclusion, the can do nothing more for me. Not what I wanted to hear and am now scared out of my mind because I dont know what to do, what the future holds for me and how much more of my life is going to be controlled by this undefeated beast. I am terrified that I am going to have to live like this for the rest of my life with them this bad and having nothing to help to control them (I am just twenty years old) - if they were "lighter" than that would be a different story but not with them like they are now.
I am looking for a solution to ease some pain because to ease all of it is probably an impossibility. However, after an appointment with my pain clinic doctor who took away the only pain meds that have done me any good, I no longer have a doctor in that area. And I do mean that he took them and disposed of them. Thankfully, the emergency room doctor yesterday gave me a new prescription for them - vicodin and valium. Right now we in the process
This has gotten pretty long - much longer than I wanted - and I am sorry for that. I hope that it doesnt come across wrong or demeaning to others and if that is the case than I am sorry.
I am hoping though, that you all have some ideas on what we can do next as far as finding help with this pain because I am out of ideas as all the doctors seem to be. Any help would be so much appreciated.
Thanks,
Jill
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Big Dan
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Re: Worse and worse....
« Reply #1 on: Apr 18th, 2003, 12:59pm » |
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I'm sorry for the pain that you're going through... my prayers are with you..... 
"Blessed are the poor in spirit: for theirs is the Kingdom of heaven"- Mathew 5:3
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suzy617
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Re: Worse and worse....
« Reply #2 on: Apr 18th, 2003, 1:03pm » |
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Dear Jill,
I havent seen you posting much so I was kind of hoping you were starting to feel better and get on with your life. Obviously that is not the case. I'm sooo sorry I cant be of any help to you as far as easing your pain but you are in my thoughts and I pray for your pain free days to come soon.
I wish I could hug you now. Please be as strong as you have been, please dont ever give up. We all love you here!
Suzy
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echo
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Re: Worse and worse....
« Reply #3 on: Apr 18th, 2003, 1:16pm » |
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Like Suzy I was hoping that the cycle had gotten much better for you. Sorry to hear that your are continuing to be hit. Hang in the Jill, you are strong enough to deal with these. It will get better. It just has to!
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| « Last Edit: Apr 18th, 2003, 3:08pm by echo » |
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CJohnson
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Re: Worse and worse....
« Reply #4 on: Apr 18th, 2003, 1:31pm » |
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Hey, Jill. Have you tried the "Shroom therapy"? I haven't, but if I was dealing with what you are dealing with, I would do it. If I had some I would send them to you, and if one of my loved ones were going through what you are going through, I would get some, take some myself to see if they were OK, and pour them down their throat.
Of course, if you have tried it, then I should STFU.
I normally do not believe in vibes, or other such things, but I guess anything is possible, and I'd be willing to take your next couple of headaches so that you could get a break. I don't believe in miracles, but this is a strange place, and it is Easter after all. What better time for the miraculous than now?
-Curtis
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Re: Worse and worse....
« Reply #5 on: Apr 18th, 2003, 2:30pm » |
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Geeze Jill.....I jus wonder if the doctors understand or comphrehend the calaber of pain you have......I feel so bad you have to go thru this....and so foten....you'd think there has to be some sort of answer out there SUMWHERE....sumthin that could slow this down or abort them........I feel helpless......I hope you find what you need soon !!!! So sad Pam
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Marijke
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Re: Worse and worse....
« Reply #6 on: Apr 18th, 2003, 2:39pm » |
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Jill,
Just wish there was something I could do....
hugs,
Marijke
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Edna
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Re: Worse and worse....
« Reply #7 on: Apr 18th, 2003, 2:50pm » |
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Jill, so very sorry that the pain is still getting you.........why did the pain management doc take away your pills?? I mean I know that normally pain killers don't usually help ch, but if they were doing you ANY kind of good, why would he take them away??
Wishing you the best as always,
EDNA (check your mail too)
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jonny
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on Apr 18th, 2003, 2:50pm, Edna wrote:| why did the pain management doc take away your pills?? I mean I know that normally pain killers don't usually help ch, but if they were doing you ANY kind of good, why would he take them away? |
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Fear of addiction probably.
..............................jonny
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Frank
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Jill,
In California, there is a law that says doctors cannot be held criminally liable or have their licenses pulled for prescribing pain medications in amounts that would ordinarily be considered gross negligence... if the patient is in intractable pain. Here's a link that briefly discusses the law and the California Medical Board's policy on it http://www.medbd.ca.gov/consumerguidelines.htm
Maybe you should have a heart-to-heart discussion with your doctor to see if that's what his concern is (that he'll get sued or lose his license). Let him know that you are aware of the risk of becoming addicted to opioids, and that it is an acceptable risk (if it is).
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Jarvis
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Re: Worse and worse....
« Reply #10 on: Apr 18th, 2003, 8:59pm » |
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Jill hi. Jill I have suffered like you many times and sometimes gone for years without a break. I know and understand where you are at. ... . It sucks. ... . I'm not sure if this will help or not but I caught on to the valium. For me any meds I took over the years that caused me to relax more than I allready do, would allways make things worse with my CH. Allways. The only meds that ever helped me even a little were stimulants of some kind or another. The lack of solid sleep definately doesnt help and then add relaxants and pain killers and hangover effects onto that and your going to hurt like hell. Now I dont know anything about drugs really, all I have is experience. Go for the buzz not the calm. Many of the illegal stimulants wich I no longer use have at times dead stopped the cycle for days. See if the docs cant try something in the stimulant area. Maybe someone like ueli can name some possibilities. I use ephedrin now to help a little, but its not good for the heart. .... . Over the years the more meds I tried the worse things seemed to get. Even worse when I switched around trying different drugs. Now I use no prescribed drugs and I find I can deal with it better. Of course I had to practice for many years first to go drug free. I am fortunate to be out of cycle and I wish you would be too. If I could I'd be happy to carry a few days for you. .......mj.....
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| « Last Edit: Apr 18th, 2003, 9:16pm by Jarvis » |
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Jarvis
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Re: Worse and worse....
« Reply #11 on: Apr 18th, 2003, 9:07pm » |
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One more thing I have never had a "certified" pain medicine stop the pain. I have tried a morphine drip and most anything else you can think of and the pain allways showed through it, sometimes I didnt care though... Didnt care about living either and thats no way to go.
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CathiP
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OH....MY....LORD.....this place is utterly amazing.....talk about miracles! For people who deal with CH to offer to carry Jill's hits, so she can have a break, KNOWING THE PAIN.....my God, it bring tears to my eyes. Sure, I wish it were possible, but how my heart swells to read more and more of the love that is at the core of this MB.
There IS an answer, Jill- it's going to take more searching, and you're gonna have to get stronger, but if all these people are pulling for you, how can you possibly lose?
Clusterville is a place filled to overflowing with love and concern- I'm glad I can visit.
May all be miraculously PF-
Cathi
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don
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Quote:| I 'have to learn to deal with it |
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Your Doc was absolutely right and there are ways to do it but not by multiple trips to the ER for pain killers.
Take to the Doc about a regimen of preventatives and abortives. Prednisone will break a cycle at least long enough to regain some strength.
In the mean time use the frozen peas, cold air, O2 if you can get it. Run in place, use the circulatory technique.
When do you see Kudrow again? Sounds like your at the end of your rope. I'd suggest to Kudrow the prednisone.
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| « Last Edit: Apr 18th, 2003, 9:16pm by don » |
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tanner
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Re: Worse and worse....
« Reply #14 on: Apr 18th, 2003, 9:56pm » |
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hi jill,
i have been reading this post for the last couple hours trying to come up with something meaningful to say and i just can't find it. its just not fair, it sucks, i wish like hell i had an answer for you but i don't!
just know that i am thinking and hoping and praying for you, and there just has to be another really good day right around the corner, doesn't there?
i don't know where in md. you are, but if you ever want to come hangout with a couple of middle age bay dwellers, only one of which will be beating his head on the dock give us an e-mail. and please remember...
it will end................................ tim
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sailpappy
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Re: Worse and worse....
« Reply #15 on: Apr 18th, 2003, 9:59pm » |
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;D ;D Jill,
I haven't followed your post enough to know what you have been doing to maintain your sanity, for 13 years, I was Doctor and drug free, I averaged 7 attacks a day and I dealt with them by standing out side the shower with my head under the showerhead, I would turn the stream down so there was little or no pressureized spray only a heavy water flow, Let the water(Cold) run over the area of your head that has the pain, taking mouthfulls and holding it untill the coolness was gone then spit it out, it took about 25 to 45 minutes, but if you focus your thoughts on the good events of your life and don't tense up any more than you have to it helps, albiet not as fast as one might hope for but it will help, you have to keep your head under the cold water until you get chilled enough to get goose bumps all over, then the attack will abate as quickly as it started.
Again, contrary to what anyone else has to say about it the Oxy Contin has stopped my attacks, I take it as prescribed and feel no type of high at all, just no headaches and after 33 years of 7/24/365 it's a miralce for me! Morphine or dilaudin will not produce the same affects, they have a very heavy sedative stoned feeling o them and the Oxy Contin is nothing at all like that!
I pray for you My Friend, and Marty I ask the powers above to continue to give you the strength of conviction to be a good supporter and a compassionate man in the face of this devistating dilhema. it's a very hard position to be in and I praise you Sir for your understanding and continued understanding attitude, You Da Man! ;D Pappy
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| « Last Edit: Apr 18th, 2003, 11:52pm by sailpappy » |
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Callico
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Re: Worse and worse....
« Reply #16 on: Apr 18th, 2003, 11:24pm » |
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Jill,
My heart cries out for you. I have not yet been where you are, and pray that I never will be, but you and Marty are definately in my prayers, and will be brought to the attention of my youth group at Church on Sunday.
God grant you the strength to hang on and deliverance from the pain.
jc
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Mastifflvr28
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Re: Worse and worse....
« Reply #17 on: Apr 18th, 2003, 11:36pm » |
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This is just an idea...I can't say that it is a good one, since I haven't been where you are Jill.
You have pain with or without the meds, and your probly getting some rebound headaches from all the heavy meds...are you not??
Why not detox off of EVERYTHING and see what happens?
Are the meds causing you more problems then they are curing?
Just a thought,
Vibes going up to you and Marty, always.
Mast
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Not4Hire
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Re: Worse and worse....
« Reply #18 on: Apr 19th, 2003, 12:15am » |
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jill....i feel i have neglected you, but i want you to know that these folks here really care....i also know that YOU know that.... you are blessed to have Marty in your corner, as well as your MOM and POP, who have had a hard time as well...
.. i remember your posts where you said that your parents just didn't understand... that you felt your friends thought you were a *head case*... but you have a *gift*.... for putting words to a pain that really has no description.....
there IS a sort of logic to this.... you are the most *refractory* case that i have read of on this board.... you have seen probably the most CH informed neurologist in America.... you have apparently taken all of the drugs that help *most* of us cope with the MOFO... and you've found NO RELIEF...
...i'm pretty sure that dilaudid was Elvis' drug-of-choice... and that it helped kill him..... be very careful, please!.... i have fought the MOFO with opiates....no joy and a long road back from addiction....
... well, my friend Mast has given you good counsel.....
Quote: You have pain with or without the meds, and your probly getting some rebound headaches from all the heavy meds...are you not??
Why not detox off of EVERYTHING and see what happens?
Are the meds causing you more problems then they are curing? |
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....my friend sailpappy also has good counsel...... the old tar has fought the MOFO FAR longer than most.... worth a look.....
hell, i don't know...... but we all wish you some PF days and nights...... some MOMENTS...... for what it's worth....
...your brother-in-pain....Steve(N4H)
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Jill
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Re: Worse and worse....
« Reply #19 on: Apr 19th, 2003, 12:51am » |
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I have written this post twice already but for some reason - my stupidity - have lost it or for some reason it wouldnt post - so here I again.
I first just want to thank everyone for their kind words of support and prayer - that means alot to me. I suppose that since mu background information is on the original post on this thread but I guess that some parts may need to be explained a little bit more when the time deems appropiate.
Here is the latest update, keeping in mind that there are alway more: Within a twenty four hour period - I have been to the emergency room three times and all in the same day. I am assumning that the I have briefly desribed all of the visits in some way or another except for this last one, this last one that has totally brought me down.
I wasnt home but for a few hours when I was hit extremely hard and sudden with a kip 10 and the only thing that my mind told me to do was to go lay down so that I could thrash and such with little harm done. As Marty tried to figure out which meds I was to take and was trying to locate the medication, there was nothing that I could do but scream, cry and beg for the beast to leave me alone - I couldnt take it anymore. After about an hour and finally taking my meds as I was supposed to, we headed off to Grossmont Emergency center.
I am going to make this story short and just say that after trying many meds that had no affect, they finally gave me the shot that I needed, that of Dilaudid and within a few minutes the pain was reduced. I, personnally, did not care for this doctor as he had his own ideas and refused to stick with what I needed.
There was one part of that visit with the doctor that bothered me, the words that I did catch said by this doctor after hearing about the severity of my case - he mentioned that this could all be related to me being psychological or another part that I caught was that I could ne pyschiatry. Those words, those sentences were wordsthat stabbed me in the back.
So that was basically that last ER trip but I have a gut feeling that these trips are not ever yet and that scares me. Each time my ear begins to hurt and I can feel the cluster building int, I am learning and each time I sm terrified. Does that make sense?
I just needed to share this with some people that may have had experiences such as this. The point in this thread was not only for me to vent but also..you think of the rest.
Thanks
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marty
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Re: Worse and worse....
« Reply #20 on: Apr 19th, 2003, 1:48am » |
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Hi Ya'll
Let me explain a few things that happened.
As to the Doctor "taking" the meds from Jill, this is true. She was allowed to leave with 2 valium pills and two Vicodin pills. She had only been taking these for two days when she saw the Doctor and they were prescribed, not by him, but by a Doctor that treated Jill at the ER. At the time, she was not taking any other medication and therefore, there was no conflict with other medications. She further was following the prescribed amount and did not take more than precsribed. As a side note, last time that I passed a kidney stone (done it 5 times now) I was given Vicodin and told to take more that Jill was prescribed and using.
As to the possilbe addiction that comes from taking Dilaudid to many times and to often.. Very True - that is a danger that can not be ignored. But what do you do when the pain level reaches such high levels that even the ER Doctors says: "Holy Shit, what happened to her!" Some of you possbily can handle this kind of pain, Jill can not and I am pretty sure that I couldn't, just as Jill can't.
I have dealt with Jill's attacks now, starting in December of 2002 and I am the one who makes the decision when to go to the ER. In the past months, since December, Jill has been hit approximately 8 - 12 times per 24 hours. In the beginning it was rare for us to go to the ER, but the ER visits have increased. Not because Jill in any way craves or even asks for drugs like Dilaudid, but because I take her to the ER based on the behavior that she displays depending on the level of pain the she is experiencing (my basis for this have not changed since I first took her to the ER). Jill is just as happy to get a non-narcotic injection (Toredal - spelling?) that used to work but no longer does.
Just for the sake of bringing it up, could Jill be "faking" a bad CH just to get a narcotic injection? - No way, I would be able to know instantly if that was the case - I just wanted to lay the addiction side to rest at this point. As to the future and the possibility of future addiction, that may or may not come.
As to shrooms, sorry - not at my house.
We will keep fighting this and yes, we are both tired, worn out, frustrated and sometimes it feels like everything that we try is useless.
But you know what?
Those "somewhat" pain free hours that Jill and I spend together, taking photographs, working on her web site, going to the San Diego Zoo, etc..
Just to see her smile, is worth everything to me.
Marty
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Georgia
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Re: Worse and worse....
« Reply #21 on: Apr 19th, 2003, 1:51am » |
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Jill -
I know where you are right now. We all do. We have all been there at one point, and we are all here today to help you through it. We are all here today. We are all here today.
You will survive this. It will get better.
You are stronger than the beast. He is only ONE monster. And he is grossly out-numbered. There are 3000 of us fighting with you.
In our arsenal we have oxygen, we have hundreds of meds and combo's thereof, we have shrooms, we have hot pepper sauce, we have blue cheese and vinegar, we have redirection of blood flow, we have melatonin, we have benedryl, we have showers, we have ice and heat, we have liver flushes, we have water x3, we have exercise, etc, etc. Every monster has his weakness, your monster is no exception. We will find it. And when we do, we will knock that mother-fucker to his knees and make him beg for mercy.
Keep looking. Keep fighting. You are not alone.
Love, strength, and power coming to you,
Georgia
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cathy
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Re: Worse and worse....
« Reply #22 on: Apr 19th, 2003, 4:30am » |
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Jill I have read your posts over the few months that I have been here and each time it saddens me, there are no words to take away your pain, but I hope and pray that you will find something to take away your saddness and despair....in the meantime all I can do is send you hugs and wishes for a break in the pain god knows you deserve it.
Marty I understand yr concerns about mshrms but here is something which is helping so many people to be pf that I can only wonder why you are so against it alot of the drugs which are prescribed are so much more harmful to yr body than these, I know they are illegal but it should be a crime to suffer as Jill does too...sorry just my opinion. I think what you do for Jill shows what a great person you are sometimes to bend the rules is different to breaking them, especially when one is suffering in this way. Okay I'll shut up now.
Take care Jill and Marty
Cathy
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catlind
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Re: Worse and worse....
« Reply #23 on: Apr 19th, 2003, 11:20am » |
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Marty CAN'T allow shroom therapy, he's a man of the law. I'm sure he'd love to let Jill try, but it would land him in jail.
Jill, try Georgia's vinegar and bleu cheese. Try anything. Try a duragesic patch. Just keep trying. Something somewhere will help.
Take Mast's advice...detox. The changing treatments and meds can cause problems. Go 2 weeks clean, water water water, and then start again. It did more good for me than you can imagine.
Cat
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Re: Worse and worse....
« Reply #24 on: Apr 19th, 2003, 12:28pm » |
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on Apr 19th, 2003, 11:20am, catlind wrote:Jill, try Georgia's vinegar and bleu cheese. Try anything. Try a duragesic patch. Just keep trying. Something somewhere will help.
Take Mast's advice...detox. The changing treatments and meds can cause problems. Go 2 weeks clean, water water water, and then start again. It did more good for me than you can imagine.
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Marty, I don't think anyone is suggesting that Jill is addicted, I think they are suggesting that with all the meds she has taken, and is taking, that rebound headaches are a definitely a possibility. I agree with Mast, Cat and Not4; detox, and then try and find an alternative solution that helps. Georgia listed quite a few of them.
I also understand and respect your stance on the shrooms. It took my husband a while to get his mind around the idea that something illegal would work. The shrooms have helped my ch's in a way that I could not have imagined. It took my ch's down from around 8 a day to nothing. All I'm suggesting is that Jill does not have to do the shrooms around you....or in your home. That would put you out of harm's way, and maybe bring her some relief.
IMHO,
Tracey
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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