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Topic: NEW TO CLUSTERS< NOT HAPPY (Read 1529 times) |
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jailcop
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NEW TO CLUSTERS< NOT HAPPY
« on: Mar 12th, 2005, 9:52pm » |
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I am a 44 year old who never heard of a cluster headache until last Thursday. I was driving home from a friends about 10 AM when I started getting a pain in my forehead. Within 10 minutes it was one of the worst pains I have ever. It was so severe I drove myself to the emergency room. After a few shots of morphine I was feeling better. They did a CAT Scan to rule out a bleed in the brain. All there was normal. They gave me a prescription for Vicoden and told me to return if it got worse. Friday I was fine, but today ( Saturday ) it came back with a vengeance. I again returned to the ER, this time they did another CAT Scan and also a Spinal Tap to rule out any kind of vascular bleeding in the brain, again all was normal. This is when cluster headaches was mentioned. I have to do a follow up Monday with my family Doctor to confirm Cluster Headaches as the cause but the Emergency Doctor is pretty sure this is the cause. I'm hoping there is some type of treatment out there that will work without the effects of a narcotic. I am a corrections officer and can not be walking around my cell block stoned for lack of a better word. I look forward to any useful information this site can provide. 
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Kevin_M
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #1 on: Mar 12th, 2005, 11:15pm » |
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on Mar 12th, 2005, 9:52pm, jailcop wrote:| I'm hoping there is some type of treatment out there that will work without the effects of a narcotic. I am a corrections officer and can not be walking around my cell block stoned for lack of a better word. I look forward to any useful information this site can provide. |
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Yeah, it's late tonight for me but don't worry, narcotics are a very last thought here. Yes, this is the place for useful information and I hope you get the right diagnosis and if clusters, your description of the pain seems familiar, a good doctor is an important asset, but this place will help immensely with what you may go through. It's especially crazy but indispensably helpful for the pain of clusters. Stick around and work through it with us, there's a lot at stake. Being new, questions and support are well addressed, don't worry.
Hopes of a different and less than cluster diagnosis.
Kevin M
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pattik
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #2 on: Mar 12th, 2005, 11:43pm » |
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You are still pretty early in the whole process of diagnosis.
You really need a neuro (who knows clusters) as well as a family doctor. Educate yourself as much as possible here on this site. You could start by taking the clustr quiz (link on the left). If and when you get a definitive cluster diagnosis, you can find much useful information here to abort headaches without narcotics. Oxygen helps many of us, and there are also some preventative meds which can help. You will also find links to help friends and co-workers to understand what you are dealing with. We sure hope what you have experienced is not the begining of cluster headaches, but if it is, welcome to Clusterville. 
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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jailcop
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #3 on: Mar 13th, 2005, 5:44pm » |
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No headach pain so far today, my back hurts from the spinal tap though. Been doing a lot or reading on this site. I hope what ever caused the 2 headachs I had are not clusters but at least if it is I know I'm not alone. Reading what some people are going through is scary. I see the family Doctor tomorrow and ( thanks to this site ) I feel more prepaired to ask questions. THANK YOU
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Kris_in_SJ
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #4 on: Mar 13th, 2005, 8:57pm » |
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Hi Jailcop,
Love your moniker! Welcome, and sorry you have to be here. Please read the medical info to the left. Print it out and take it to your doc. Also take the cluster quiz. Third request (aren't I a pushy bitch?) check your email. I'm sending a couple of articles that could be of use to both you and your GP (and the neurologist you'll probably be referred to).
Best of Luck and Many Hugs,
Kris
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Gator
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #5 on: Mar 14th, 2005, 1:26am » |
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Hola, Dude! Welcome to our little Garden of Eden!
I would agree with what has been posted here already. Too soon to jump on a diagnosis yet. First step would be to get with a good neuro with ch experience. An MRI/MRA is a better tool for diagnosing brain problems, especially if you think you may have CH.
Except for rare occassions, narcotics are a waste of time for ch. I've had clusters punch through 200mg of Demerol like I had taken nothing at all. There are meds that are more effective in preventing or lessening the frequency and severity of the attacks and other meds to abort attacks that break through the prevents. If you have ch, these will be the meds you need.
In the mean time, education is the key to getting the treatment you deserve. Read everything in the links to the left and on the OUCH Website. Also read through the threads in the various message boards. Mega amounts of information there.
I sincerely hope you do not have Cluster Headaches, but if you do, there is no better place than right here for information and support.
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jokrs2
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #6 on: Mar 14th, 2005, 2:03am » |
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Welcome, but not to the nightmare  . The people here sure understand what you are feeling. I was misdiagnosed for 20 years and ended up addicted to Morphine Sulfate for 14 years every day like clockwork. I never really got any relief until a doctor prescribed me my first triptan, I believe it was Maxalt. I then moved on to Imitrex. The problem was I was still taking the Morphine and that was probably just giving me HUGE rebound migraines, so I'm with Gator in saying opioids are not the answer and are just another problem. I am trying to get along with just Kudzu right now and am having some breaks in the cycles now. Hope you find answers and have pain free days and nights. Blessings, Joe
ps. went through my 5th day today on withdrawal from the morphine. And Kris is not a bitch! 
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| « Last Edit: Mar 14th, 2005, 2:07am by jokrs2 » |
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tom222
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #7 on: Mar 14th, 2005, 3:34pm » |
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Hi all...not new to CH's but am new to this site, and found it interesting. I am 42 and I have been SUFFERING for seven years with CH's, and this cycle is the worse ever. Its good to know...or maybe not....that others have these things also. I have never felt pain the way I have been feeling it for the last four nights. Thank god I have a Dr. that understands and does not hesitate to get me the trex without all the BS of having to see him first.
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jailcop
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #8 on: Mar 14th, 2005, 3:51pm » |
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Well I had my follow up with my family doctor today. He made an appointment for me to see a neurologist Wednesday. There looking at this being either Clusters or Migraines but still have a few other things to look at like the fact I have high blood pressure. I'm not sure I understand the difference between Clusters and Migraines, what is the difference ? My pain is not one sided, it goes across my forehead from temple to temple. He said Clusters are normally one sided is this true ? What is the link for the quiz that is referenced I can't find it ? Sorry for all the questions but I'm the type of person who like to get as much information as possible before doing anything so I have a better understanding of what's going on. No real pain today just a dull throbbing but nothing I can't handle. I'm really glad I found this site. Well I have to go pick up my blood pressure medication, I look for to any help you can provide.on Mar 13th, 2005, 8:57pm, Kris_in_SJ wrote:Hi Jailcop,
Love your moniker! Welcome, and sorry you have to be here. Please read the medical info to the left. Print it out and take it to your doc. Also take the cluster quiz. Third request (aren't I a pushy bitch?) check your email. I'm sending a couple of articles that could be of use to both you and your GP (and the neurologist you'll probably be referred to).
Best of Luck and Many Hugs,
Kris |
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pattik
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #9 on: Mar 14th, 2005, 4:03pm » |
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on Mar 14th, 2005, 3:51pm, jailcop wrote: My pain is not one sided, it goes across my forehead from temple to temple. He said Clusters are normally one sided is this true ? What is the link for the quiz that is referenced I can't find it ?
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Hi again jailcop,
Clusters are always one-sided and have other traits as well. The link for the cluster quiz is on the left side of your screen-the fourth link from the top. The link just above it will explain some common cluster traits. Please check this info out before you see your neuro. It will help him/her to help you. Good luck with your diagnosis, and I'm glad that you are seeing a neuro to get this figured out.
p.k.
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jailcop
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #10 on: Mar 14th, 2005, 4:13pm » |
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One more question, what are cycles ? How long are they etc. I'm not sure I know what they are.
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pattik
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #11 on: Mar 14th, 2005, 4:23pm » |
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Many, but not all CH'ers get their headaches in episodes, or cycles. They can last for a few weeks to a couple of months, and these episodes can come a couple of times a year for some. Please look around this site to get more specific information to help you get a diagnosis.
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jailcop
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #12 on: Mar 14th, 2005, 4:29pm » |
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I hate to be a pain, but maybe something is missing on my screen. I still can't fine the Quiz. What am I looking for that I can't seem to find....Thanks
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jokrs2
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #13 on: Mar 14th, 2005, 4:35pm » |
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Right on Pattik. As a chronic for many years I am typically always in cycle with perhaps a couple of decent days a year but hopefully that is starting to change with recent results with Kudzu and learning from others and their experiences in the posts. Getting off morphine is my most recent accomplishment and I have NO doubt that the Kudzu helped lessen the withdrawal and now I can feel my own endorphines working again. What a blessing. I hope your cycles or demon hits are short and end completely. Joe
Jailcop. The left side is missing on my parents "webtv". Are you using something similar?
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| « Last Edit: Mar 14th, 2005, 4:38pm by jokrs2 » |
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jailcop
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #14 on: Mar 14th, 2005, 4:43pm » |
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Jailcop. The left side is missing on my parents "webtv". Are you using something similar........No regular PC but still nothing to the left.
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jailcop
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #16 on: Mar 14th, 2005, 6:08pm » |
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Thanks for all the help, I'm putting everything into a database and will take it with me to the Doctor..
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don
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #17 on: Mar 14th, 2005, 7:43pm » |
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Quote:| Reading what some people are going through is scary. |
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It sure is my friend but know these four things:
1. You are not alone, we know the pain
2. CH is not curable but it is treatable
3. The pain can be managed without narcotics.
4. Although it may seem unfathonable while under attack, there are worse things than CH.
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| « Last Edit: Mar 14th, 2005, 7:47pm by don » |
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jailcop
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #18 on: Mar 14th, 2005, 8:01pm » |
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The pain I had was like when I had Kidney Stones but at least kidney stones can be removed. I would be hard to remove the brain although my wife says I don't use mine much. LOL on Mar 14th, 2005, 7:43pm, don wrote:
It sure is my friend but know these four things:
1. You are not alone, we know the pain
2. CH is not curable but it is treatable
3. The pain can be managed without narcotics.
4. Although it may seem unfathonable while under attack, there are worse things than CH. |
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don
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #19 on: Mar 14th, 2005, 8:24pm » |
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Quote:| although my wife says I don't use mine much. |
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At least she acknowledges you have one. Your already ahead of the game.
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TomM
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #20 on: Mar 15th, 2005, 8:50am » |
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JailCop--The links MagMan gave you are good. Be sure to educate your self on this but try very hard to NOT self-diagnosis. Many of us here have been around for years dealing with this and know a great deal but we are not doctors.
The three pieces of advice from me are:
1) Skip the narcotics--they tend to cause re-bound HA's (headaches).
2) Get to a Neurologist who knows HA's.
3) This board is a great group of supporters. Use it to its fullest.
Good Luck and welcome to loony bin!
TomM 
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| « Last Edit: Mar 15th, 2005, 8:51am by TomM » |
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jailcop
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #21 on: Mar 15th, 2005, 10:29am » |
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I'm on my way to the Doctors now, can't wait to see what he comes up with.
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sandie99
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #22 on: Mar 15th, 2005, 1:10pm » |
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on Mar 14th, 2005, 7:43pm, don wrote:
It sure is my friend but know these four things:
1. You are not alone, we know the pain
2. CH is not curable but it is treatable
3. The pain can be managed without narcotics.
4. Although it may seem unfathonable while under attack, there are worse things than CH. |
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Amen to that.
Whatever you have, I am so sorry that you're hurting... I've suffered from several different HAs over the years. I do hope that you'll get diagnosis and treatment soon!
Best wishes,
Sandie
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jailcop
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #23 on: Mar 15th, 2005, 8:20pm » |
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I saw the neurologist today. On the way home another much less severe headache occurred in a different area of the head. Luckily I had 2 codeine pills with me, it made the drive home a bit difficult ( 20 miles ) but the pain went away quickly. The diagnosis is THUNDER CLAP HEADACHES. The doctor is very sure it's not clusters or migraines and still wants to do an MRI to rule out a blood flow problem. He didn't give me a way to combat the pain other than to go to the hospital for treatment if it's really bad. He said this type of pain is not likely to last or reoccur, as he put it they just happen sometimes. People will go through this and when it's over you may never get them again. The pain I had today started as a stiffening in the back of the neck followed by pressure on the top of the head ( not the forehead like before ) after about 20 minutes the pressure turned to pain. Not severe but enough to make you feel really lousy. I took the pills and when I got home I hit the couch and fell asleep. When I woke up an hour later the pain was gone but the pressure is still there. I informed the doctor all about what I had read about clusters but he said although some of the symptoms are similar there not the same. Well if anyone knows anything about Thunder Clap Headaches let me know, even the Physicians Assistant who did the initial exam on me today didn't know anything about them.
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TxBasslady
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Re: NEW TO CLUSTERS< NOT HAPPY
« Reply #24 on: Mar 16th, 2005, 2:29am » |
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Welcome to the board.
I've never heard of these headaches...
However, I did use the google search and it looks as if these can be pretty serious. Sounds like your doc ran the correct tests to rule out the serious stuff.
Keep us posted...let us know how you're getting along.
I'm retired from Law Enforcement.....I didn't get CH till 8 years after retirement. Know what you mean by walking the cell blocks....for sure you can't afford to be in a drug induced state.
PF vibes and good luck!
Jean
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