Re: Headaches (ER Adventure)

[Guest guest]

Hi Kirk,

I have not had much of a chance latley (due to circumstances beyone my control)

to comment within this group setting, however I try to read (or at least skim thru)

the e-mails.

Yours have caught my attention, as I can almost "feel" the terible pain you are

experiencing! My heart, goes out to you Kirk! This must indeed be likened to

a *living hell!* I pray the docs script something for relief for you very soon, as

ones sanity can only be stretched so far. You are an incredible young man for

being able to explain these severe head pains so vividly...and to still come out

with a positive attitude.

Here's hoping that you will soon be on the way to recovery from this intense

pain!

from Wisconsin,

Tricia

-- Re: Headaches (ER Adventure)

Tracilyn, have you ever found anything that you can take at home that helps with these SOB'n headaches?

Last night my experience in the ER was no different than you mentioned. After providing a list of the meds I am currently on, stating that I have Stills and giving both my PCP's names and that of my rheumatologist I figured it would be easy.......not. They first did an EKG and started an IV. They asked me if this was a consistent problem or if this was unique. I stated that this has been severely magnified since January when Stills first really showed (I think) it's ugly head.The doctor asked what Stills was, I gave him the short version, a form of JRA. He also asked me what usually works, so I gave him the short history that everything up to and including Morphine has proved ineffective. I then told him the only thing that helped was Dilaudid.The doc said he was going to try toridol (???) first, and if that didn't work, he would give me the Dilaudid. Well, all they did was prolong my agony, as the first junk didn't even faze this beauty of a headache. After what seemed like an eternity, they gave me the Dilaudid. It at least allowed me to sleep for about three hours or so. When I awoke, I was told I can leave. I still had a headache (still do now) but it isn't anywhere near as severe.

I also learned a new thing today.....don't attempt to drive after having this stuff! I was asked if I was alright to drive.... I stood up, walked (hobbled) around as usual, and felt mostly normal. I said yes. I even felt alright walking to my truck, but as soon as I pulled out on the highway (1/2 mile from the hospital) my eyes went nuts and I became very dizzy. I drove another three miles where I got off of the highway and onto a road that would take me home. I had to pull over, get out and walk around. After a few minutes, I felt light headed, but good enough to drive....those last 4 miles were hellacious. I tried the A/C, the heat, covering one eye with my hand, and barely could see the road. I couldn't focus on anything at all, and thank God I made it home safely. I will NOT try that again! I was dizzier than hell for another hour after getting in my house, which made me very PO'd as all I wanted to do was sleep!!! I haven't had a bed "spin" in years, and now remember why I refuse to get drunk! The moderate headache made that all the more enjoyable!

I did get one positive out of this. I asked the one nurse what else I could ask my doctor for as these headaches are making my life hell, all this on top of Stills. She told me that Dilaudid is available in a pill. I'll be damned!

I have to see my PCP next Thursday. I could see him sooner, but figure I will kill two birds with one stone as I have the Abdominal CT scan Friday afternoon, and the results should be ready by then. I am going to ask for a better pain med, and if refuted, go to a pain clinic. I can't take these anymore!!! 8 of the last 18 days I have had a headache, 4 of which were on par with this last one. If I count today, that makes it 9/19 days. Wayyy too much.

Have a good one, Kirk.

[Guest guest]

Hi Kirk,

I have not had much of a chance latley (due to circumstances beyone my control)

to comment within this group setting, however I try to read (or at least skim thru)

the e-mails.

Yours have caught my attention, as I can almost "feel" the terible pain you are

experiencing! My heart, goes out to you Kirk! This must indeed be likened to

a *living hell!* I pray the docs script something for relief for you very soon, as

ones sanity can only be stretched so far. You are an incredible young man for

being able to explain these severe head pains so vividly...and to still come out

with a positive attitude.

Here's hoping that you will soon be on the way to recovery from this intense

pain!

from Wisconsin,

Tricia

-- Re: Headaches (ER Adventure)

Tracilyn, have you ever found anything that you can take at home that helps with these SOB'n headaches?

Last night my experience in the ER was no different than you mentioned. After providing a list of the meds I am currently on, stating that I have Stills and giving both my PCP's names and that of my rheumatologist I figured it would be easy.......not. They first did an EKG and started an IV. They asked me if this was a consistent problem or if this was unique. I stated that this has been severely magnified since January when Stills first really showed (I think) it's ugly head.The doctor asked what Stills was, I gave him the short version, a form of JRA. He also asked me what usually works, so I gave him the short history that everything up to and including Morphine has proved ineffective. I then told him the only thing that helped was Dilaudid.The doc said he was going to try toridol (???) first, and if that didn't work, he would give me the Dilaudid. Well, all they did was prolong my agony, as the first junk didn't even faze this beauty of a headache. After what seemed like an eternity, they gave me the Dilaudid. It at least allowed me to sleep for about three hours or so. When I awoke, I was told I can leave. I still had a headache (still do now) but it isn't anywhere near as severe.

I also learned a new thing today.....don't attempt to drive after having this stuff! I was asked if I was alright to drive.... I stood up, walked (hobbled) around as usual, and felt mostly normal. I said yes. I even felt alright walking to my truck, but as soon as I pulled out on the highway (1/2 mile from the hospital) my eyes went nuts and I became very dizzy. I drove another three miles where I got off of the highway and onto a road that would take me home. I had to pull over, get out and walk around. After a few minutes, I felt light headed, but good enough to drive....those last 4 miles were hellacious. I tried the A/C, the heat, covering one eye with my hand, and barely could see the road. I couldn't focus on anything at all, and thank God I made it home safely. I will NOT try that again! I was dizzier than hell for another hour after getting in my house, which made me very PO'd as all I wanted to do was sleep!!! I haven't had a bed "spin" in years, and now remember why I refuse to get drunk! The moderate headache made that all the more enjoyable!

I did get one positive out of this. I asked the one nurse what else I could ask my doctor for as these headaches are making my life hell, all this on top of Stills. She told me that Dilaudid is available in a pill. I'll be damned!

I have to see my PCP next Thursday. I could see him sooner, but figure I will kill two birds with one stone as I have the Abdominal CT scan Friday afternoon, and the results should be ready by then. I am going to ask for a better pain med, and if refuted, go to a pain clinic. I can't take these anymore!!! 8 of the last 18 days I have had a headache, 4 of which were on par with this last one. If I count today, that makes it 9/19 days. Wayyy too much.

Have a good one, Kirk.

[Guest guest]

Tracilyn, have you ever found anything that you can take at home that helps with these SOB'n headaches?

Last night my experience in the ER was no different than you mentioned. After providing a list of the meds I am currently on, stating that I have Stills and giving both my PCP's names and that of my rheumatologist I figured it would be easy.......not. They first did an EKG and started an IV. They asked me if this was a consistent problem or if this was unique. I stated that this has been severely magnified since January when Stills first really showed (I think) it's ugly head.The doctor asked what Stills was, I gave him the short version, a form of JRA. He also asked me what usually works, so I gave him the short history that everything up to and including Morphine has proved ineffective. I then told him the only thing that helped was Dilaudid.The doc said he was going to try toridol (???) first, and if that didn't work, he would give me the Dilaudid. Well, all they did was prolong my agony, as the first junk didn't even faze this beauty of a headache. After what seemed like an eternity, they gave me the Dilaudid. It at least allowed me to sleep for about three hours or so. When I awoke, I was told I can leave. I still had a headache (still do now) but it isn't anywhere near as severe.

I also learned a new thing today.....don't attempt to drive after having this stuff! I was asked if I was alright to drive.... I stood up, walked (hobbled) around as usual, and felt mostly normal. I said yes. I even felt alright walking to my truck, but as soon as I pulled out on the highway (1/2 mile from the hospital) my eyes went nuts and I became very dizzy. I drove another three miles where I got off of the highway and onto a road that would take me home. I had to pull over, get out and walk around. After a few minutes, I felt light headed, but good enough to drive....those last 4 miles were hellacious. I tried the A/C, the heat, covering one eye with my hand, and barely could see the road. I couldn't focus on anything at all, and thank God I made it home safely. I will NOT try that again! I was dizzier than hell for another hour after getting in my house, which made me very PO'd as all I wanted to do was sleep!!! I haven't had a bed "spin" in years, and now remember why I refuse to get drunk! The moderate headache made that all the more enjoyable!

I did get one positive out of this. I asked the one nurse what else I could ask my doctor for as these headaches are making my life hell, all this on top of Stills. She told me that Dilaudid is available in a pill. I'll be damned!

I have to see my PCP next Thursday. I could see him sooner, but figure I will kill two birds with one stone as I have the Abdominal CT scan Friday afternoon, and the results should be ready by then. I am going to ask for a better pain med, and if refuted, go to a pain clinic. I can't take these anymore!!! 8 of the last 18 days I have had a headache, 4 of which were on par with this last one. If I count today, that makes it 9/19 days. Wayyy too much.

Have a good one, Kirk.

RE: Headaches

Kirk,

I am so sorry that you have not yet found relief for your headaches. And yes I know the feeling about beating them over the head with a baseball bat or two... . That is why I refuse to go to the emergency rooms any more, because many of them treat you like you are stupid in the level of your pain. I have suffered with daily migraines for years,since age 7 or8, earliest ones I can remember being told I told "sick headaches" cause I puked with them. LOL

Anyhow, many of the ER docs rather use less narcotic interventions like Reglan and Bendryl combos or DHE to try to treat the migraines. My favorite is well "what works for you to treat these headaches or what do they normally treat you with???? OH .well we don't use that we use this instead, take it or leave it." And 9 out of 10 times it's the Reglan and Bendryl combo which they found does work for some patients.

My dear friend please feel better soon and I pray for your relief of these headache.... I feel for you as I know what that is like to suffer day in and day out.

LOVE AND HUGS<

Tracilyn

[Guest guest]

Tricia....I was always an outgoing person before this hit me. I have many, many true friends that have proven themselves and a few newer ones that have yet to have the chance. I am usually friendly, a little lewd, but more times than not "professional". The only times in my life I have been negative are the same as everyone else has had. I am incredibly hard to upset, but when I am, no one really wants to know that side of me.

I was in a sort of bad mood since this first started, and in a horrible and unapproachable mood after the diagnostic hammer of Stills was "clinically" smashed upon my head on April 2nd or 3rd. It was mentioned to me as a possibility in February, and after reading the Stills site and noting I hit a lot of the high notes, I thought I was at least mentally prepared for the possibility, yet when the doctor spoke those words, it was like I went into a dark zone. I had a terrible time adjusting my mentality to this, but with the help of my wife, family and friends I have at least regained a positive outlook, at least outwardly. I still am not too happy, but am happy that it hasn't stopped me, nor "cost" me.

My "cost" isn't measured in money.......... I just want to keep everything I have earned, and continue to nurture it.

I knew if I stayed "P O'd" at the world that it would strain my marriage, and most likely keeping anyone from wanting to be near me. Now if I could stay this way, I'll be O.K.

Kirk.

Re: Headaches (ER Adventure)

Tracilyn, have you ever found anything that you can take at home that helps with these SOB'n headaches?

Last night my experience in the ER was no different than you mentioned. After providing a list of the meds I am currently on, stating that I have Stills and giving both my PCP's names and that of my rheumatologist I figured it would be easy.......not. They first did an EKG and started an IV. They asked me if this was a consistent problem or if this was unique. I stated that this has been severely magnified since January when Stills first really showed (I think) it's ugly head.The doctor asked what Stills was, I gave him the short version, a form of JRA. He also asked me what usually works, so I gave him the short history that everything up to and including Morphine has proved ineffective. I then told him the only thing that helped was Dilaudid.The doc said he was going to try toridol (???) first, and if that didn't work, he would give me the Dilaudid. Well, all they did was prolong my agony, as the first junk didn't even faze this beauty of a headache. After what seemed like an eternity, they gave me the Dilaudid. It at least allowed me to sleep for about three hours or so. When I awoke, I was told I can leave. I still had a headache (still do now) but it isn't anywhere near as severe.

I also learned a new thing today.....don't attempt to drive after having this stuff! I was asked if I was alright to drive.... I stood up, walked (hobbled) around as usual, and felt mostly normal. I said yes. I even felt alright walking to my truck, but as soon as I pulled out on the highway (1/2 mile from the hospital) my eyes went nuts and I became very dizzy. I drove another three miles where I got off of the highway and onto a road that would take me home. I had to pull over, get out and walk around. After a few minutes, I felt light headed, but good enough to drive....those last 4 miles were hellacious. I tried the A/C, the heat, covering one eye with my hand, and barely could see the road. I couldn't focus on anything at all, and thank God I made it home safely. I will NOT try that again! I was dizzier than hell for another hour after getting in my house, which made me very PO'd as all I wanted to do was sleep!!! I haven't had a bed "spin" in years, and now remember why I refuse to get drunk! The moderate headache made that all the more enjoyable!

I did get one positive out of this. I asked the one nurse what else I could ask my doctor for as these headaches are making my life hell, all this on top of Stills. She told me that Dilaudid is available in a pill. I'll be damned!

I have to see my PCP next Thursday. I could see him sooner, but figure I will kill two birds with one stone as I have the Abdominal CT scan Friday afternoon, and the results should be ready by then. I am going to ask for a better pain med, and if refuted, go to a pain clinic. I can't take these anymore!!! 8 of the last 18 days I have had a headache, 4 of which were on par with this last one. If I count today, that makes it 9/19 days. Wayyy too much.

Have a good one, Kirk.

Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Tricia....I was always an outgoing person before this hit me. I have many, many true friends that have proven themselves and a few newer ones that have yet to have the chance. I am usually friendly, a little lewd, but more times than not "professional". The only times in my life I have been negative are the same as everyone else has had. I am incredibly hard to upset, but when I am, no one really wants to know that side of me.

I was in a sort of bad mood since this first started, and in a horrible and unapproachable mood after the diagnostic hammer of Stills was "clinically" smashed upon my head on April 2nd or 3rd. It was mentioned to me as a possibility in February, and after reading the Stills site and noting I hit a lot of the high notes, I thought I was at least mentally prepared for the possibility, yet when the doctor spoke those words, it was like I went into a dark zone. I had a terrible time adjusting my mentality to this, but with the help of my wife, family and friends I have at least regained a positive outlook, at least outwardly. I still am not too happy, but am happy that it hasn't stopped me, nor "cost" me.

My "cost" isn't measured in money.......... I just want to keep everything I have earned, and continue to nurture it.

I knew if I stayed "P O'd" at the world that it would strain my marriage, and most likely keeping anyone from wanting to be near me. Now if I could stay this way, I'll be O.K.

Kirk.

Re: Headaches (ER Adventure)

Tracilyn, have you ever found anything that you can take at home that helps with these SOB'n headaches?

Last night my experience in the ER was no different than you mentioned. After providing a list of the meds I am currently on, stating that I have Stills and giving both my PCP's names and that of my rheumatologist I figured it would be easy.......not. They first did an EKG and started an IV. They asked me if this was a consistent problem or if this was unique. I stated that this has been severely magnified since January when Stills first really showed (I think) it's ugly head.The doctor asked what Stills was, I gave him the short version, a form of JRA. He also asked me what usually works, so I gave him the short history that everything up to and including Morphine has proved ineffective. I then told him the only thing that helped was Dilaudid.The doc said he was going to try toridol (???) first, and if that didn't work, he would give me the Dilaudid. Well, all they did was prolong my agony, as the first junk didn't even faze this beauty of a headache. After what seemed like an eternity, they gave me the Dilaudid. It at least allowed me to sleep for about three hours or so. When I awoke, I was told I can leave. I still had a headache (still do now) but it isn't anywhere near as severe.

I also learned a new thing today.....don't attempt to drive after having this stuff! I was asked if I was alright to drive.... I stood up, walked (hobbled) around as usual, and felt mostly normal. I said yes. I even felt alright walking to my truck, but as soon as I pulled out on the highway (1/2 mile from the hospital) my eyes went nuts and I became very dizzy. I drove another three miles where I got off of the highway and onto a road that would take me home. I had to pull over, get out and walk around. After a few minutes, I felt light headed, but good enough to drive....those last 4 miles were hellacious. I tried the A/C, the heat, covering one eye with my hand, and barely could see the road. I couldn't focus on anything at all, and thank God I made it home safely. I will NOT try that again! I was dizzier than hell for another hour after getting in my house, which made me very PO'd as all I wanted to do was sleep!!! I haven't had a bed "spin" in years, and now remember why I refuse to get drunk! The moderate headache made that all the more enjoyable!

I did get one positive out of this. I asked the one nurse what else I could ask my doctor for as these headaches are making my life hell, all this on top of Stills. She told me that Dilaudid is available in a pill. I'll be damned!

I have to see my PCP next Thursday. I could see him sooner, but figure I will kill two birds with one stone as I have the Abdominal CT scan Friday afternoon, and the results should be ready by then. I am going to ask for a better pain med, and if refuted, go to a pain clinic. I can't take these anymore!!! 8 of the last 18 days I have had a headache, 4 of which were on par with this last one. If I count today, that makes it 9/19 days. Wayyy too much.

Have a good one, Kirk.

Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.