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Marina
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Loss of Control
« on: Nov 9th, 2002, 2:18pm » |
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Hi, my name is Marina. I have been a cluster suffer for 6 years. I have recently lost my medical coverage due to a forced company transfer. For the last two months, I have been battling the clusters alone and without prevention and abortives. I thought that my faith in God was unshakeable and would see me through the really bad ones. This past week, it has been proven to me that clusters can go way above the kip scale. Thursday afternoon I received the worst cluster ever. It started out the same as always....I went through the head banging, praying, and pacing. Then I started to notice that it was lasting longer than usual, as soon as that went through my head, it happened. A flash, like a lighting bolt, an unusual and searing pain, from the corner of my right eye all the way to the back of my head. The next thing I remember, I was in my neighbors’ house on the floor. I heard this horrid whaling and moaning and my neighbor talking to someone and hearing the words "6 hours" and begging..."PLEASE MAKE IT STOP!" Some time later, I awoke in a hospital room. I soon came to learn everything that happened that night. That it was me that was begging and it was my neighbor telling a paramedic that I had been on her floor for six hours. After having to ask about the bandages on my arms, I found out that I had tried to slit my wrists. Fortunately, I was to out of it to do any real damage and to far-gone off the deep end to know what I was doing. Turns out that my cluster had lasted for over 10 hours. My first thought was that I was being punished for something, that my children needed me and God was making me incapable of doing my job as a parent. I think I know in my heart that it’s not true. I have had to shift my thinking and try to believe that everything happens for a reason. Maybe this is God’s way of bringing me home, that I will have to die from these attacks. Maybe there are better parents waiting for my children. Who knows?? One thing is for certain...as certain as the sun rising in the east....there will always be another cluster waiting for us.
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kim
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Re: Loss of Control
« Reply #1 on: Nov 9th, 2002, 2:41pm » |
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You will not die from the pain. At times you may wish for such a reprieve............
Are you taking any medications at present for headache relief? I have come to believe that some medications will set off a regular attack into something much worse....
Over a period of approx 25 years, I have had attacks that somewhat resemble what you went through, however, looking back, I see a lot of interference by pain meds, and certain other medications that were not at all compatible with clusters. That caused the headache to become a different entity.....
the repetitive and fairly predictable nature of clusters has manifested itself pretty much in my life and also my loved ones. However, on occasion there have been times when it got very out of hand and we were not prepared for the intensity and duration........
there are A TON of natural remedies when faced with insurance crap.
Also, 02 THE RIGHT WAY!!!!! has provided fast relief here for many. Please look throughout the website. Jonny, Not4hire, and all you other o2 brains, please add your stuff !!!!
Best wishes, and PFDAN.
Kim
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ave
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Marina, it is difficult to know precisely how to react to your message.
My firstthought: If you had been seeing a regular doctor before losing insurance covering, I would strongly suggest you try and see him again, even once, for the attack you describve seems somewhat untypical, even for you.
If I were you, I'd check to see nothing else was wrong with me.
As for coping without insurance, non-medical methods of seeing attacks out come to mind.
Have you scoured this site to find out as much as you can?
Have you tried coffee, heat or cold, excercise or Charlie's circulatory technique?
You may reduce stress and pain in many little ways.
Also, have you tried oxygen? It is possible to buy your own, or even get welding oxygen and have your own valve installed.
Check the archives here. There is a wealth of information. Also: check the OUCH site (links to the left in the page).
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Margi
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Re: Loss of Control
« Reply #3 on: Nov 9th, 2002, 3:02pm » |
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Hi Marina
Sorry you're suffering. 
To me, there's just something not right about that particular attack. Did they give you an MRI at the hospital? Or a CT scan? Did they check you for signs of stroke?
I'm not saying you're not suffering from clusters, so please don't think that, but this one particular attack sure sounds like something more could have happened. Please get in to see a neurologist as soon as you can and tell them what happened. Passing out and losing track of time is sure not the norm for regular cluster attacks.
Please keep in touch.
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Marina
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Re: Loss of Control
« Reply #4 on: Nov 9th, 2002, 3:37pm » |
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Thank you for the suggestions, unfortunately since I have had them for 6 years, I have tried just about everything in the book from histamine blockers to accupunture. Since my headaches are sporadic and show up at will, prevention meds such as lithium has not been very helpful. I had great results with just about every abortive I have tried. Imitrex, Amerge, DHE Injections, and O2.
I just figured that it happened from a backlash of absolutely no meds in my system. Things being the way they are...A single mom with two small boys, it is impossible to take food out of my children's mouths just so I can spend 30 minutes with a doctor or spend $120.00 for O2 or Imitrex. Welding O2 is easy enough to get ahold of but, does nothing for the pain. There are just too many additives and I have only had success with pure oxygen. I do have friends and family members trying to help, my ex-husband has even tried illegal methods of obtaining meds. I am grateful for everyone's support but, it is time to move on. It is time for my family to have some relief from this too. They need to go on with their lives. I have burdened them for to long. I have gotten to the point where I feel there is nothing else that can be done other than to pray I never have one of those again. If I can manage to stay away from those, I will be able to handle the regular ones on my own.
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Jarvis
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Re: Loss of Control
« Reply #5 on: Nov 9th, 2002, 3:49pm » |
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Hi marina......first if it has been less than a year or so you should be able to renew your insurance under the cobra plan. Call your employer and check it out, Others probly know more than I. Also talk to the hospital and they can guide you on alternate insurance help as well... I suffer from extremes as well. ........"Do have it checked out".........I recall similar sensations in the past however....At the kip 10s the reguired concentration to overcome the pain is as intense as the pain itself. And given that loss of concentration its like a door blasts open and WHAM. The flash of light, I have seen it myself. It is possible to lose all control. Have you been taking any over counter pain meds at all. This may sound strange but if I remember right certain pain killers can actually enhance the effect for me...Get it checked out!!!!!
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Marina
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Re: Loss of Control
« Reply #6 on: Nov 9th, 2002, 4:10pm » |
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I can't remember much about the hopital part, but after it broke, the nurse told me that when I first came in they thought I was seizing but, I wasn't. My bloodpressure was to high, I was dehydrated, they gave me morphine for pain and right now, that is all I know. I will be able to pick up my medical records on Monday to find out for sure. I do know that they drew blood but, what kind of tests they are running, I don't know. Usually, my clusters are very typical for me. I have them in the afternoons about 2pm and last for about a hour or hour and a half. They only warning I have is a slight pressure in the bottom part of the corner of my right eye. After that, I will be at full onset within a few minutes. I imagine there could be a slight possibility that what happened could be non-related. I sincerely dought that it is not related. It happened while I was having a cluster and the inital lightening bolt took the same path of a regular cluster. It stands to reason that not only was it apart of the cluster but, just a new version. Which as we all know is all to common. Some of the clusters we have are more severe than others. Maybe this was just my worst one.
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marty
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Re: Loss of Control
« Reply #7 on: Nov 9th, 2002, 4:31pm » |
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Hey Jonny.. you sure made this post "different" ;D
Marina, the flash or lightningbolt - can you describe it more in detail? I had something similar happen to me a couple of years back - never did find out what it was and never had it again. It was the brightest light blue and crystal white flash that I have ever experience - very weird and scared the daylights out of me - it was like someone used a camera flash inside my head 
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captdshea
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Re: Loss of Control
« Reply #8 on: Nov 9th, 2002, 5:32pm » |
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Marty- Only your retina can cause something like what
I've read here Lightning bolt. And is common when
the retina is damaged. This is what medicaly is happening when the term I saw stars is used also.
I've leaned here the hypothalamus is located dosel
of the optic nerve. Guess something is going on there.
Who knows Right........
PFDAN
David
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Azrael
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Re: Loss of Control
« Reply #9 on: Nov 10th, 2002, 9:08pm » |
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I know I'm going to get flamed all to Hell for this, but I don't really give a damn tonight. 
For many many moons, medical science assumed that migraines were a purely vascular headache, but recently have discovered evidence that they may actually have something to do with a wiring problem in the CNS of a migraineur, somewhat similar to what may cause epilepsy. What if CH suffers have a similar defect? Only... It doesn't manifest itself very often. Only a handful of CH sufferers may be suceptable to the defect, and it's only activated in rare circumstances. Could this not cause an atypical attack at time, such as what some here have described?
Or consider this... (For the ones who didn't stop with the last comment to type a post to call me names, and some other BS.  ) It is known by science that if you over stimulate the senses of a person, that you can cause the central nervous system to sorta short circuit. A certain pattern of bright flashes may make someone sick. Or a flash-bang grenade may make someone dizzy, and disoriented. What if under the right conditions, a CH can over stimulate the senses... I know there's no medical proof for this idea, but consider the fact that the body can panic, and go into shock after fairly minimal stimuli at times. And I don't think anyone will argue that a CH is a great deal more than minimal stimuli.
Marina... I agree that you should make sure that it's not something more serious. Anytime a CH'er has an atypical attack, they really should verify that it's not something else. But I also believe that it is possible for a CH'er to have an atypical attack, and I don't believe, like some, that an atypical attack makes you a migaineur. I hope it turns out to be only a once in a million occurance, and you never experience anything like that again. I also hope it wasn't a sign of something worse. Good luck!
PFDAN........................... Drk^Angel
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echo
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Re: Loss of Control
« Reply #10 on: Nov 11th, 2002, 2:08pm » |
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I'm jumping into this thread late Marina so I hope everything is much better for you today. I've had these little jewels since the early 70's and thankfully have gone chronic to eposodic. Sorry to read you had such a bad one come on. The length makes me curious as to wheather or not you had some mutant combo going for you. Glad you had a neighbor who cared. Extremely glad to read that you were not successfull in canceling your ticket. Your children and their future children need you to stick around. You will find the med combo platter you need to keep the beast at bay, or at least within a tolerable limit.
Hang in there.
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fubar
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Re: Loss of Control
« Reply #11 on: Nov 11th, 2002, 2:31pm » |
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Please forgive me, but that sounds like a migraine. My neuro says it's rare to see a person with both migraine and CH, but it does happen. I'm one of the lucky few I guess, since I get both. I've had migraines that last 10 hours to 3-4 days, and they can be as painful as a cluster (hovering at Kip6-7, Kip9-10 for much shorther periods). I still don't understand why some people here think they have cornered the market on pain... migraine can reach Kip10 easily. I can tell the difference primarily because CH comes on all at once and goes away just as fast, while migraine comes on a bit slower and certainly takes it's sweet time going away, even when it has started to die down. Of course, there are other things that make it easy to tell them apart once you get in a few practice runs. I think once the pain reaches Kip9-10, it doesn't much matter what caused it.
Also, I can't imagine having enough clarity or control to attempt any form of suicide at or above Kip9. But hey, that's just me. Maybe you're tougher than I am. Kip9 reduces me to a blathering mess.
It wouldn't surprise me that a CH'er wouldn't recognize a migraine.
-Fu
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Opus
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Re: Loss of Control
« Reply #12 on: Nov 11th, 2002, 5:15pm » |
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Good post DRK,
Furbar,
I've only had one migraine so I don't have your experience. Does a 10 MG have the same pain as a CH or is it a 10 becouse it is 1/2 of your head opposed to a CH with spots of pain. I was surprise how having the pain on one whole side could bring me down. Of course I laid down in a dark room with nsaids and it was gone in a hour. Of course I get MG that last as long as CH, and CH that last as long as MG.
Marina,
I know you went through a horrible and hopefully one of a kind experience , but just remember that God didn't cause the HA but he sure brought you some help for you and your children. hoping and praying that you have many PFDAN (pain free days and nights) PJB
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fubar
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Re: Loss of Control
« Reply #13 on: Nov 12th, 2002, 3:55pm » |
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Well sheet.
I didn't mean to 'accuse' poor Marina of being a lowly meegrainer, GOD FORBID.
If you don't know what is wrong with you, how can you seek treatment? By going to a doctor? Yeah, right. How many people here have had to educate their own doctor about CH? All I was trying to say was IT MIGHT NOT BE CH. If you had a 10 hour Kip10, passed out, tried to commit suicide, went to the neighbor's house, etc... I'd say it doesn't sound like a typical CH. On the other hand, since I do have experience with migraines that are killers, it wouldn't be a bad idea to start suspecting something other than CH. Who f'ing knows?
I'm new here and have read a lot, but I don't understand the problem some people here have with:
1) suspected migraineurs in the midst
2) anybody who might suggest anything other than CH as a cause for pain
All you're doing is limiting the scope of your knowledge.
Don't lose faith Marina. God loves you and we might like you someday if you can prove you're an honest CH sufferer. 
-Fu
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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