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Title: Hummm 11 days ago things were great Post by David A on Feb 19th, 2004, 11:49pm 2/8/04 the pain struck --- scared my wife to death and i just wished i was dead. today iam here with a tentative diagnosis --- only a few more test to rape me for by the medical establishment. But from the research and the expression on the docs face when asked what the chances of it not being this --- well,,,,, Iam here. It has come daily --- always as perdicted in middle of the night, and just to make sure i don't forget about it, it has been staying light on the side of my head during the day on couple of different days. It has even came to streangth during the day twice. I am an over the road owner operator truck driver --- but if the last 11 days is an indication of what i have to look forward too... my occupation may have to change. I called my wife this morning crying because i was in the midst of my 2 attack of the day and only 3 hours from the first. I was over 800 miles from the house, I will be home monday to spend the day at my doctors as apposed to the clinic in Nort Dakota. Can I get some Newbee questions answered? What specific question should i ask the doc? How do you guy and gals hold down a full time job? How do i convince my wife and kids not to feel bad because they can't help me? What do i have to look forward to as a resonable normal life (please give me some hope here)? Thanks David |
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Title: Re: Hummm 11 days ago things were great Post by Rick_K on Feb 20th, 2004, 12:10am David, Sorry you had to find us but glad your here. You will not find a more understanding group then these people. We all understand what you are going through and are here for you. What should you ask the doc...read everything to the left, go in prepared. Oxygen is a wonderful thing and helps many of us when used right. Get an O2 script from your doc. Also, get you wife to read some of these posts and there is a supporter corner that she can read. There is nothing better than meeting another clusterhead, we are getting tograther in Dallas on the 28th. If there is any way you and you wife can make it to Dallas it will be an experience you and your family will never forget. Look on the main board for the Texas Meet & Greet thread. Welcome aboard and remember we are here to listen to you and help all we can. See you in Dallas.... Rick |
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Title: Re: Hummm 11 days ago things were great Post by BobG on Feb 20th, 2004, 1:30am on 02/19/04 at 23:49:59, David A wrote:
Welcome to the board David. tentative diagnosis...........It does sound like clusters but the doc hasn't decided yet. So it's not time to panic. On the left side of your screen is a button 'cluster quiz'. Try the quiz and see what you get for a score. It's not yet time to start looking for a new job. Cluster headaches come in....well, clusters. This, your first cycle could be over in a week. And your second cycle may be months or years away. Newbee questions? Ask away. Many very knowledgable people here with lots of experience in the care and feeding of clusters. There's more information here than anywhere in the world. Questions for your doc? Read all you can under the buttons on the left side of your screen. When you've absorbed it all you will be better educated about clusters than 90% of the doctors anywhere. The better you are educated the better you'll be able to contribute to your own treatment. Ask him/her about verapamil, oxygen, imitrex. Ask if he/she has any other cluster patients. How do we hold a full time job? Some don't but most do. I can only speak for my self. My job can be stressful and that is good, for me. In my 30+ years of clusters I don't think I've had more that a half dozen attacks on the job. It's the relaxing after the job that is bad for me. Wife and kids? Talk to them about it. Talk when you are NOT being hit. Asure them that it is NOT their fault. Let them know what it is that you'd like them to do during an attack. Most people just want to be left alone, no talking, no touching, nothing. This site has a wonderful support section. Ask your wife to log in and get to know the supporters here. A reasonable normal life? You'll make whatever kind of life you want it to be. We all have learned how to cope and tricks to get through the day and through the cycle. If you do have clusters you will too. Good luck. Hope the doctor diagnoses something other than clusters but if it is clusters then we're here for you and your family. |
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Title: Re: Hummm 11 days ago things were great Post by BobG on Feb 20th, 2004, 2:00am Hey David...... I forgot something in the above message. You're not far from Nashville. In July a bunch of clusterheads will be there. Why not plan to be there yourself? |
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Title: Re: Hummm 11 days ago things were great Post by t_h_b on Feb 20th, 2004, 6:52am on 02/19/04 at 23:49:59, David A wrote:
You should ask the doc for prescriptions for preventatives and abortives. If the doc isn't a neurologist you might want a referral to one. You'll have to educate yourself about what treatments are available because most MD's aren't knowledgeable about Cluster Headache treatment. Having insurance coverage for prescriptions will help. You might ask your doc for verapamil, Imitrex, and O2 for starters. Since you're on the road you'll probably want a portable tank of 02 if it works for you. You might also talk to him about other preventatives. Melatonin works for a lot of people. There is also psilocybin. There are links to meds and 02 on the left. Holding a full-time job isn't easy for me but it's not really because of the cluster headache attacks! My sleep is a messed up so I am tired all of the time. Once you find adequate abortive medication, the actual attacks might interrupt your schedule for only half an hour. If your wife and kids understand what you're going through it will keep them from being so worried. It will probably always bother them to see you in such awful pain. Make sure the kids know that it's not anything that they have done to cause your headaches--I've read here that some kids think that. You can have a normal life with a job and family. This is a chronic condition, like diabetes or asthma, but it is something that you can deal with. It does affect your self-image, especially if you have been otherwise healthy. Just don't be in denial about having CH if you do indeed have it. The odds are that you are episodic and you will only have to deal with this for a fraction of the year. Keep asking away and educating yourself. You're always sure to get a variety of opinions here on every subject! |
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Title: Re: Hummm 11 days ago things were great Post by Tiannia on Feb 20th, 2004, 3:02pm Welcome to Clusterville. Ask whatever you need, we are always opena nd will always try and help. Even if it is just a place to vent cause you feel like you are going crazy. Please try and get your wife to come and talk to. I wish my husband would. It is totally underatndable to get angry about this. So venting is allowed. We have all been there. What specific question should i ask the doc? Keep track of when the hit. This will help your doc undersatnd how much meds you need. Be prepared that insurance companies will not fill the scripts as written. You might only get 6 imitrex a month. So you have to figure out ways to deal so that you can take one whn you REALLY NEED it. How do you guy and gals hold down a full time job? You will figure it out. Talk to your boss. There are some great links that talk about what cluster headaches are so that thtye know what you have and dont just assume that it is a simple, take an excedrin HA and all is peaches and rainbows. How do i convince my wife and kids not to feel bad because they can't help me? This is a hard one, especially if they are little. But talk to them. For my I let my kids help me when they can. Getting ice packs. Cold wah clothes. my 17 mo old rocks with me. This will effect your life, maybe fore the rest of your life. So remember that. Talk to your wife about that. That there is not a simple fix and that you can get through this together.. I am a strange one here and actually prefer to be around my kids and husband when I am getting hit. They are the reasonthat I fight. They give me the strength to not just give up and let the beast win. It is exhausting but you will find that if you are a cluster head you have a great strength inside and your supporters do as well. What do i have to look forward to as a resonable normal life (please give me some hope here)? Dont think any of us are normal, but we make due. Like Bob said you will learn tricks. What works for some doesn't work for others. HTere are a lot of trials and errors but keep looking for stuff that works. Talk to your doc. Print stuff out and bring it to him to read. Ask for more then Imitrex. As you need somethign that can make them lessen in intensity and maybe break the cycle. Tiannia |
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Title: Re: Hummm 11 days ago things were great Post by justasound on Feb 20th, 2004, 3:14pm Hey david, man I feel for you. I'm getting hit in a truck right now. What a coincidence, I'm in Tenn. right now.. Parked at the flying J in Knoxville. It really sucks being trapped on a schedule with no way to go walk it or really do anything. Youre in my prayers bro. Lee |
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Title: Re: Hummm 11 days ago things were great Post by don on Feb 22nd, 2004, 5:34am Quote:
Sure you can. People with MS do it. People with CP do it. List goes on. You just have to adapt and modify a few things. Oxygen is a great option for you. Just toss some in the truck with you. In 28 years CH has not taken me from a full time job. Close at times, but I adapted and modified as much as I could and got the best medications available. Being an over the road driver you will have the opportuninty to set up a whole network of clusterhead contacts. Your getting nailed on the road someone will be close by to help you through it. |
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Title: Re: Hummm 11 days ago things were great Post by Paigelle on Feb 22nd, 2004, 8:57am I am so, so sorry you are on the road and suffering with this crap. I hope when you get home, that a Dr will listen and understand what is going on. Print out information from this site to take with you. Fulltime jobs are difficult to sustain at times and I have this feeling that in your profession it would be terribly hard to continue working. But once you get the proper diagnosis and a "cocktail" that works for you, hopefully you should be able to continue. Have you wife and children check out the supporters corner here at this board. It will offer support for them, information about CH and how to essentially deal with you. Good luck! Paige |
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Title: Re: Hummm 11 days ago things were great Post by Charlie on Feb 23rd, 2004, 2:10pm Welcome David: A couple things: When possible, sleeping in a recliner may reduce the number of nocturnal attacks, not always but it's worth a shot. You'll find some good ideas here and ways to deal with this horror. Printing out stuff may be useful. Take look: Here are a couple links that may be helpful. The first being a technique that worked for me: http://www.netsync.net/~charlies/ This next one is a letter written by a fellow cluster headache sufferer that is the best of its kind to help explain these attacks to families, friends and employers. Its author encourages copying. It is well worth it. "http://www.ouch-uk.org/ch/note_colleagues.cfm" Good luck and let us know how you're getting along. Charlie |
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