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New from PA (Read 24141 times)
POPO8
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Re: New from PA
Reply #25 - Jul 20th, 2010 at 3:55am  
Thank you all for the words of welcome and the well wishes.  A friend of mine told me this site was a very mature, very supportive site....  and Im glad he was right.
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I LOVE TO SLEEP... IF GIVEN THE CHANCE I WOULD SLEEP ALL DAY... NOW, Im scared to lay down in my own bed, Im scared to fall asleep because I know whats gonna come next...........................
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POPO8
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Re: New from PA
Reply #26 - Jul 21st, 2010 at 5:00am  
So I think Im getting real lucky. Decided to experiment with either one or the other PREDNISONE or MUSCLE RELAXER, and still no "headache"

Not sure if this is normal , or if my attack was just that short, but the day after my 2 days of attacks I decided to hit 20mg of prednisone and a muscle relaxer and no issue the following nite. Now I know some of you have said Prednisone is the MIRACLE drug, but only a temp solution, so i decided to only take a muscle relaxer last nite (nite for me most of you call DAYTIME) and again no issue.

Is it just a fluke????  wtf is up? Im so confused.....  I wanna move away and leave the CH behind....
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I LOVE TO SLEEP... IF GIVEN THE CHANCE I WOULD SLEEP ALL DAY... NOW, Im scared to lay down in my own bed, Im scared to fall asleep because I know whats gonna come next...........................
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Re: New from PA
Reply #27 - Jul 21st, 2010 at 5:08am  
POPO8 wrote on Jul 21st, 2010 at 5:00am:
Is it just a fluke????  wtf is up? Im so confused.....  I wanna move away and leave the CH behind....


Could be your cycle is over.(?)
Also one thing you will learn about CH it changes constantly 1 cycle you have could be short and not so sweet, the next could be long and horrific.  Once you think you have it pegged it changes on you.
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POPO8
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Re: New from PA
Reply #28 - Jul 21st, 2010 at 6:11am  
JustNotRight wrote on Jul 21st, 2010 at 5:08am:
POPO8 wrote on Jul 21st, 2010 at 5:00am:
Is it just a fluke????  wtf is up? Im so confused.....  I wanna move away and leave the CH behind....


Could be your cycle is over.(?)
Also one thing you will learn about CH it changes constantly 1 cycle you have could be short and not so sweet, the next could be long and horrific.  Once you think you have it pegged it changes on you.



ugh... thank you.  Not exactly what I wanted to hear.  But I expected it.
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I LOVE TO SLEEP... IF GIVEN THE CHANCE I WOULD SLEEP ALL DAY... NOW, Im scared to lay down in my own bed, Im scared to fall asleep because I know whats gonna come next...........................
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POPO8
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Re: New from PA
Reply #29 - Jul 21st, 2010 at 10:24pm  
Ok, so today I learned that alcohol (captain morgan) is a definite trigger to give me a CH in the midde of the day.... Angry Angry Angry Angry
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I LOVE TO SLEEP... IF GIVEN THE CHANCE I WOULD SLEEP ALL DAY... NOW, Im scared to lay down in my own bed, Im scared to fall asleep because I know whats gonna come next...........................
http://www.facebook.com/popo8  
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Guiseppi
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Re: New from PA
Reply #30 - Jul 21st, 2010 at 10:28pm  
While not a universal trigger.....alcohol is extremely common. For me within 15 minutes of drinking I'll get hit. Undecided

Joe
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Re: New from PA
Reply #31 - Jul 22nd, 2010 at 3:29pm  
Not all alcohol is off the menu for everyone when in cycle.
Some find that only certain types like lager, red wine and spirits set a ch off but are ok with white wine and Stout.

But it is not much fun finding out which one you can and can't drink if you can drink at all . There is at least one thread on this subject one the board I'll see if i can find it and post a link.

God bless

Nigel
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Matthew ch 11 v 28


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Re: New from PA
Reply #32 - Jul 22nd, 2010 at 3:41pm  
couldn't find the thread I was looking for but I did find this quote from Bob Johnson

Quote:
We bat this question around here from time to time but nothing seems to stick except for alcohol, and that  when you are in an active period.

The single exception to alcohol was a study out of Europe, some years ago, which identified distilled spirits and red wine as triggers--but not white wine. A couple of folks, here, have confirmed this has been their experience.


That was from a thread on food triggers but I'm shore there's some other stuff on here on the subject .

God bless

Nigel

Edited:
Cos I cant spell
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« Last Edit: Jul 22nd, 2010 at 3:44pm by Headache Boy uk »  
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Emmaus, PA
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Re: New from PA
Reply #33 - Jul 26th, 2010 at 2:58pm  
POPO8 wrote on Jul 21st, 2010 at 10:24pm:
Ok, so today I learned that alcohol (captain morgan) is a definite trigger to give me a CH in the midde of the day.... Angry Angry Angry Angry
I usually do a beer test 3 days after being pain free.
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POPO8
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Re: New from PA
Reply #34 - Jul 27th, 2010 at 9:21pm  
Ok, so I figured I would just keep my updates and stuff in my intro thread.... rather than be all over the place on the site.

Went to the docs today..... of course, I told him whats going on, showed him printouts, explained what Ive learned and some of the tricks and treatments that people have used and.......

he takes my blood pressure, tells me its fine (lil high but fine) then gives me a script to have bloodwork done 2morrow....  he also has one of the girls get my information to set up a head MRI.....   He does not like the prednisone usse, and my suggestion to use O2, is shot down because he says "thats for realy severe cases"....  I know I may not have it the worst of anyone on here, but let me tell you (as Im sure you all know) when its happening... it IS REALY SEVERE CASES!!!!...

I leave, I come home and what do you know.... I get an attack while awake.... 60mgs of prednisone and a hot hot hot shower and Im able to nap the rest of it away..... oh well, here goes that hospital and Dr BS that I hate, waiting and making appointments just to continue and wait and suffer till we finaly get to what I have been fortunate to discover already.....


Ok thats my rant.. and not much I can do bout it.... so I live and I deal.... FK IT!
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I LOVE TO SLEEP... IF GIVEN THE CHANCE I WOULD SLEEP ALL DAY... NOW, Im scared to lay down in my own bed, Im scared to fall asleep because I know whats gonna come next...........................
http://www.facebook.com/popo8  
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feneq
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Re: New from PA
Reply #35 - Jul 27th, 2010 at 9:35pm  
go to a pain specialist, this man you've visited has no idea. if it's CH an mri is useless- if- ;unfortunately i  have absolute no idea of the us-health-system; you are insured and your insurance needs proof and WILL cover the costs you'll need a functional PET. go to a specialist! it's a waste of time, and i really hope for you it's not CH,
head up!
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Linda_Howell
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Re: New from PA
Reply #36 - Jul 27th, 2010 at 9:42pm  
Quote:
i  have absolute no idea of the us-health-system;


Yes, you do not.
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Lettucehead
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Re: New from PA
Reply #37 - Jul 27th, 2010 at 10:38pm  
feneq wrote on Jul 27th, 2010 at 9:35pm:
go to a pain specialist, this man you've visited has no idea. if it's CH an mri is useless- if- ;unfortunately i  have absolute no idea of the us-health-system; you are insured and your insurance needs proof and WILL cover the costs you'll need a functional PET. go to a specialist! it's a waste of time, and i really hope for you it's not CH,
head up!


I'm thinking the MRI was ordered to make sure that there is no other reason for the HAs - i.e. tumor, aneurysm, etc.  It is not meant to treat the HAs. 

As for a functional PET scan, generally in the US these are ordered and covered by insurance for cases where primary or metastatic cancer is suspected or for mapping of functional areas in patients who are planning brain surgery for various reasons.  Very rarely, it may be used for dementia studies or similar - very very rarely. 
I have not heard of one being ordered and covered for initial evaluation of a headache.

And, POPO8, I'm so sorry you've been having so much problem getting O2 - that's just ridiculous!  Keep at it and find a another doc if you need - you can even use welding O2 - look around the board, and you'll find threads about this.  Good luck and keep us up on how you're doing!!!
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POPO8
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Re: New from PA
Reply #38 - Jul 28th, 2010 at 11:41pm  
Well I went and got my blood drawn this morning.... tick.... tock..... tick..... tock..... tick...... tock.....
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I LOVE TO SLEEP... IF GIVEN THE CHANCE I WOULD SLEEP ALL DAY... NOW, Im scared to lay down in my own bed, Im scared to fall asleep because I know whats gonna come next...........................
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Re: New from PA
Reply #39 - Jul 28th, 2010 at 11:51pm  
My advice - search actively to find a doc who will get you going on O2. I love Apria as a supplier and maybe you can call their local branch and find out which doctors they recommend.

I keep a big tank at home for the night and have about 10 portable tanks for the day with a nice carry case. Makes it real easy. Went to the movies the other night, felt a headache coming on, found a quiet place outside away from the smokers and got going on the oxygen. 10 minutes later I am smiling again.

Finding the right med to stop the cycle has always been a pain for me (no pun intended) but I don't know how I could survive without my O2. Don't let the doctor tell you otherwise.
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POPO8
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Re: New from PA
Reply #40 - Jul 29th, 2010 at 8:37pm  
Well, my problem is a little more complex than that.  See, my UNCLE is my Dr.... so I wouldnt feel right disrespecting him either if I go ahead and try to find another dr.  yes, I know, that means I have to suffer... but smart or not, sometimes that is what I chose to do, to keep Family happy.

BTW, Had another killer ache today... like two in a row when I was driving home from work and about half an hour after I was finally able to drug myself to sleep.

Im going to go to the AIRGAS company and talk to them about the 02 that they carry and see if I will be able to undermine the medical practice and get myself some relief...


BTW, If I can get my hands on a Nitrous Oxide bottle  (thats not been used of course) would that work?
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I LOVE TO SLEEP... IF GIVEN THE CHANCE I WOULD SLEEP ALL DAY... NOW, Im scared to lay down in my own bed, Im scared to fall asleep because I know whats gonna come next...........................
http://www.facebook.com/popo8  
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Re: New from PA
Reply #41 - Jul 29th, 2010 at 10:00pm  
yeah - I used my uncle as my doc at first too.....tough call. Even though he is a neurologist, he wasn't all that familiar with cluster headaches. It makes a difference.

Maybe show him the research on this site. Tell him that the oxygen at a high-flow rate is absolutely standard treatment to abort the headaches. Not radical at all.

good luck!
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Re: New from PA
Reply #42 - Jul 30th, 2010 at 1:31am  
POPO8 wrote on Jul 29th, 2010 at 8:37pm:
BTW, If I can get my hands on a Nitrous Oxide bottle  (thats not been used of course) would that work?


I doubt any supplier would fill it with oxygen.  Besides that, unless it's bigger than the nitrous bottles I've seen (I'm thinking of the ones you put in the trunk of high-performance automobiles) it'd be way too small to do you any particular good.

Best,

George
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Re: New from PA
Reply #43 - Jul 30th, 2010 at 7:24am  
POPO8 wrote on Jul 27th, 2010 at 9:21pm:
Ok, so I figured I would just keep my updates and stuff in my intro thread.... rather than be all over the place on the site.

Went to the docs today..... of course, I told him whats going on, showed him printouts, explained what Ive learned and some of the tricks and treatments that people have used and.......

he takes my blood pressure, tells me its fine (lil high but fine) then gives me a script to have bloodwork done 2morrow....  he also has one of the girls get my information to set up a head MRI.....   He does not like the prednisone usse, and my suggestion to use O2, is shot down because he says "thats for realy severe cases"....  I know I may not have it the worst of anyone on here, but let me tell you (as Im sure you all know) when its happening... it IS REALY SEVERE CASES!!!!...

I leave, I come home and what do you know.... I get an attack while awake.... 60mgs of prednisone and a hot hot hot shower and Im able to nap the rest of it away..... oh well, here goes that hospital and Dr BS that I hate, waiting and making appointments just to continue and wait and suffer till we finaly get to what I have been fortunate to discover already.....


Ok thats my rant.. and not much I can do bout it.... so I live and I deal.... FK IT!

That right there is when I walk out, family or not.  Oxygen is good for any level of cluster, whether you're getting shadows or Kip 10's.  I know some GP's and neuros may have little to no knowledge of clusters, but the ones who are willing to work with you and learn are ones to stick with.  The ones who are experienced the are the best, but the ones who think they know what we're feeling are the ones to dump.  I've only had two neuros.  The first one was a "know it all" type.  He laughed when I said I talk to people on these boards and rolled his eyes when I told him about the clusterbuster approach.  I pretty much said, "thank you very little" on my way out.  My current neuro listens and as he is no pro on oxygen therapy, he wanted to see what others use as far as flow goes.  He wrote the script, I got the O2 and walked out happy.  Last time I visited him, he asked how the rivea corymbosa seeds are going because he supports alternative therapies.  I just got lucky I guess.  I know  you're not far from Allentown and if you're willing to make the trip up this way, I can give you my neuros info in a PM.

Best of luck!

Chad
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Re: New from PA
Reply #44 - Jul 30th, 2010 at 10:51am  
I know it's tough with family....but DAMNIT!!!!! Angry Depriving a CH'er of oxygen is like denying insulin to a diabetic. It's cruel and heartless. Please print this out and take it to your uncle. Tell him I mean no disrespect, but he is denying you relief from your suffering and deliberately causing you harm....in voilation of the oath he took. 32 year of CH and NOTHING has done more to provide a normal life for me then oxygen. I'm from a family of 14 brothers and sisters, we now number well over 150, so I am very sympathetic to family dynamics......this is bigger then that. Good luck!

Joe
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Re: New from PA
Reply #45 - Jul 30th, 2010 at 9:56pm  
I have to agree with Joe, I must say.
Generally, this is why it is very frowned upon to be the medical provider to your family - even extended family such as a nephew.  Not unethical exactly, but very frowned upon.

I mean (and perhaps you would) but would you feel comfortable discussing your rectal bleeding or your erectile dysfunction with your uncle?  Or what about your concerns that you're gay or have violent fantasies?  Again, not that you do, but you need to feel able to talk about those things with your doctor if you should need to and feel no judgment or conflict of interest.

Just saying, but unless your uncle is the only provider in town, you owe it to yourself to make sure you're getting the best care possible...
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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH
 
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POPO8
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Posts: 81
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Re: New from PA
Reply #46 - Jul 30th, 2010 at 11:47pm  
Peter B wrote on Jul 29th, 2010 at 10:00pm:
yeah - I used my uncle as my doc at first too.....tough call. Even though he is a neurologist, he wasn't all that familiar with cluster headaches. It makes a difference.

Maybe show him the research on this site. Tell him that the oxygen at a high-flow rate is absolutely standard treatment to abort the headaches. Not radical at all.

good luck!



I am trying to show and explain what i am learning.  I am also trying to be patient , understanding the fact that people who have never dealt with this realy have NO idea.  My girlfriend asked me today what it feels like, and it does not seem to do it justice to simply say that my eye feels like it wants to pop out of the front of my face and the right side of my skull  wants to explode.... I explained it like this.

If I lay in the driveway, and you pull my truck up to the back of my skull till its touching, then simply let of the brakes so that the truck wants to move forward but my head is its resistance... yet it still slowly progresses forward trying to squeeze my head like a zit, and eveything wants to pop  right out of my right eye socket......

THATS the best analogy I could give.....
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I LOVE TO SLEEP... IF GIVEN THE CHANCE I WOULD SLEEP ALL DAY... NOW, Im scared to lay down in my own bed, Im scared to fall asleep because I know whats gonna come next...........................
http://www.facebook.com/popo8  
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POPO8
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Re: New from PA
Reply #47 - Jul 30th, 2010 at 11:50pm  
George wrote on Jul 30th, 2010 at 1:31am:
POPO8 wrote on Jul 29th, 2010 at 8:37pm:
BTW, If I can get my hands on a Nitrous Oxide bottle  (thats not been used of course) would that work?


I doubt any supplier would fill it with oxygen.  Besides that, unless it's bigger than the nitrous bottles I've seen (I'm thinking of the ones you put in the trunk of high-performance automobiles) it'd be way too small to do you any particular good.

Best,

George



well the Nitrous oxide tanks are 5,10 , or 20 lbs that i have access to.  And I have every fitting available for whatever my hook up need is.  Im just getting a lil desperate and trying to find ways around to medicate myself with the o2....   AIRGAS is a supplier of alot of air tank fills, Im just not sure if the O2 that they have is a medical grade that would suffice for me to injest......
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I LOVE TO SLEEP... IF GIVEN THE CHANCE I WOULD SLEEP ALL DAY... NOW, Im scared to lay down in my own bed, Im scared to fall asleep because I know whats gonna come next...........................
http://www.facebook.com/popo8  
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POPO8
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Re: New from PA
Reply #48 - Jul 30th, 2010 at 11:51pm  
feneq wrote on Jul 27th, 2010 at 9:35pm:
go to a pain specialist, this man you've visited has no idea. if it's CH an mri is useless- if- ;unfortunately i  have absolute no idea of the us-health-system; you are insured and your insurance needs proof and WILL cover the costs you'll need a functional PET. go to a specialist! it's a waste of time, and i really hope for you it's not CH,
head up!



I cant go to a specialist without a referal... I cant get a referal without jumping though the hoops of all of the other tests first.......insurance is a bitch.
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I LOVE TO SLEEP... IF GIVEN THE CHANCE I WOULD SLEEP ALL DAY... NOW, Im scared to lay down in my own bed, Im scared to fall asleep because I know whats gonna come next...........................
http://www.facebook.com/popo8  
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Re: New from PA
Reply #49 - Jul 30th, 2010 at 11:53pm  
Chad wrote on Jul 30th, 2010 at 7:24am:
POPO8 wrote on Jul 27th, 2010 at 9:21pm:
Ok, so I figured I would just keep my updates and stuff in my intro thread.... rather than be all over the place on the site.

Went to the docs today..... of course, I told him whats going on, showed him printouts, explained what Ive learned and some of the tricks and treatments that people have used and.......

he takes my blood pressure, tells me its fine (lil high but fine) then gives me a script to have bloodwork done 2morrow....  he also has one of the girls get my information to set up a head MRI.....   He does not like the prednisone usse, and my suggestion to use O2, is shot down because he says "thats for realy severe cases"....  I know I may not have it the worst of anyone on here, but let me tell you (as Im sure you all know) when its happening... it IS REALY SEVERE CASES!!!!...

I leave, I come home and what do you know.... I get an attack while awake.... 60mgs of prednisone and a hot hot hot shower and Im able to nap the rest of it away..... oh well, here goes that hospital and Dr BS that I hate, waiting and making appointments just to continue and wait and suffer till we finaly get to what I have been fortunate to discover already.....


Ok thats my rant.. and not much I can do bout it.... so I live and I deal.... FK IT!

That right there is when I walk out, family or not.  Oxygen is good for any level of cluster, whether you're getting shadows or Kip 10's.  I know some GP's and neuros may have little to no knowledge of clusters, but the ones who are willing to work with you and learn are ones to stick with.  The ones who are experienced the are the best, but the ones who think they know what we're feeling are the ones to dump.  I've only had two neuros.  The first one was a "know it all" type.  He laughed when I said I talk to people on these boards and rolled his eyes when I told him about the clusterbuster approach.  I pretty much said, "thank you very little" on my way out.  My current neuro listens and as he is no pro on oxygen therapy, he wanted to see what others use as far as flow goes.  He wrote the script, I got the O2 and walked out happy.  Last time I visited him, he asked how the rivea corymbosa seeds are going because he supports alternative therapies.  I just got lucky I guess.  I know  you're not far from Allentown and if you're willing to make the trip up this way, I can give you my neuros info in a PM.

Best of luck!

Chad



Hit me up wth that PM info, maybe I can put my uncle in contact with him.... for a little bit of revalation on the situation.     And as much as I would love to have what I need now, FAMILY is first, even if it means I gotta hurt..... its just the way it is.
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I LOVE TO SLEEP... IF GIVEN THE CHANCE I WOULD SLEEP ALL DAY... NOW, Im scared to lay down in my own bed, Im scared to fall asleep because I know whats gonna come next...........................
http://www.facebook.com/popo8  
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