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Cluster Headache Help and Support >> Getting to Know Ya >> Suffering in Ohio http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1286644372 Message started by Pat_Ohio on Oct 9th, 2010 at 1:12pm |
Title: Suffering in Ohio Post by Pat_Ohio on Oct 9th, 2010 at 1:12pm
New to this site and hoping to get a sence of how to cope with these headaches.
I was diagnosed with Migraines 15 years ago while in the USMC. Saturday, Sunday, and Monday I was in the hospital ER due to an over the top Migraine. On Tuesday morning Oct 5th, I was admitted into the VA hospital with a high feever and a terrible headache. I was not released until Thursday evening after losing 13 pounds. I had every test imaginable and nothing. I was back in the ER on Friday... Crawling down the hall, sobbing from the exhaustion and pain. My wife had never seen me in such pain or such a mess. After 12 hours of more tests and every norcotic in the cabinet the doctor tried Cafegort. ( I think) An hour later I walked out of the hospital, still in pain but not ready to die. He told me that my migraines had either turned into cluster headaches or that they hed been missdiagnosed all this time. Either way, I needed to be aware that I have Cluster Headaches and read up on them and learn about them. Thanks for hosting the site and providing such great info. Now, I still have a headache. Feels like my ear is full of water and if I move my head too fast the pressure pushes up into my head, behind my eyes. But if I stay still, I'm good. But how long will I be able to stay still? So, my questions are simple. What now? How will this efect my life? I am a full time student and have had to drop all of my classes. What is next for my family? What will work and what will not? What is absurd and what is believable in regards to treatments? Any hlep is much appreciated... |
Title: Re: Suffering in Ohio Post by Headache Boy uk on Oct 9th, 2010 at 8:45pm
Hi Pat
some of what you describe dose not sound like clusters, but then everyone's experience of ch seams to be a little different. Have you taken the cluster quiz (link to the left<<<<) Your next move should be to go and see a headache spesilist and get a formal diagnosis as simtoms of ch can also be mimicked by other more serious conditions.keep a diary loging time of day , intensity, how long it lasts and meds used during the attack. this can be realy helpfull to a specilist when dealing with this sort of thing. A beiliveable treatment or at least something that may help is energy drinks like red bull , a can drunk as quikely as possible right at the start of an attack can reduce pain levels or even stop an attack , it's worth a try while your wating to see your headache specialist. Good luck and God bless Nigel [edit]sorry the spell checker isn't working again :-/ [/edit] |
Title: Re: Suffering in Ohio Post by bejeeber on Oct 10th, 2010 at 2:56am
Hey Pat, it sounds to me like you could really use a visit to a headache specialist type neurologist if you can get such an appointment (not just a rank and file neurologist - they tend to be ignorant and lousy when it comes to CH).
Not saying you don't have CH, but needing to lay still, fever, etc. are not symptoms that I've seen associated with CH. Actual believable treatments for CH include O2, and although you'd understandably be skeptical at first, Psilocybin. Treatments known to not work for most if not all of us include chiropractic, accupuncture and imitrex pills (the injectible form of imitrex is a powerful abortive though). |
Title: Re: Suffering in Ohio Post by Guiseppi on Oct 10th, 2010 at 8:40am
The trip to a Headache Specialist Neuro is very important. There are numerous headache types and meds that are effective for one type are worthless for another. That being said:
If you get a confirmed CH diagnsosis, it's not the end of the world! 32 years of CH here and I've managed a 30 year law enforcement career, a 28 plus year marriage and rasing two brat girls to adulthood. Just takes a lot of planning, ALWAYS be ready for a hit. I have had the best success using a 2 pronged strategy. 1: A good prevent med. A med you take daily, while on cycle, to reduce frequency and intensity. I use lithium at 1200 mg a day, blocks 60-70% of my hits. Verapamil is the common first line prevent, many here use Topomax. Most prevents take 10-14 days to become effective, I use a 2 week prednisone tapet during that time to keep beasty as bay. Prednisone.....the good cop/bad cop med! Pred will block 100% of my attacks at doses as low as 30 mg a day. But staying on pred long term has a strong potential for damage to the body! For that reason it's used on a short term only basis for CH. 2: An abortive therapy. An attack starts, now what. Oxygen should be your first line abortive. I can stop an attack in 6-8 minutes by huffing pure 02. Read the oxygen info link on the left as it must be used correctly or it won't work. Imitrex injectables are expensive but work as well as oxygen for me. I keep them on hand only for when I'm caught away from my oxygen. Many use the imitrex nasal spray, it's cheaper then the injectors. The imitrex pills don't work for most as they take too long to get into your system. Cafergot is an old school med, I was originally given it in the early 80's. Suggests the doc you're dealing with is not up to date on treatments. :( As I mentioned earlier, CH is not the end of the world, but requires you never let your guard down, or you'll suffer the painful consequences. Welcome to the board. Joe |
Title: Re: Suffering in Ohio Post by Pat_Ohio on Oct 10th, 2010 at 4:47pm
First of all, you guys (and gals) Rock... Thanks so much for your responces.
I have a neurologist that I see at the VA here in Ohio. She is no specialist when it comes to Migraines so I dont expect her to be very familiar with CH. I have been tested for Meningitis and all sorts of other things too. All tests came back clear. My last visit to the ER was the most painful yet. That was the one with me sobbing, crawling down the hall. No ammount of narcotic, imitrex or anything could touch it. The doctor tried Cafegort and that actually got it under controll. To the point that I was no longer in tears wishing that I would die... I still was in pain but it was liveable. The assumption now is that the fever was due to a viral infection but the headaches are seperate from the viral thing. I have another appointment with the Neuro folks at the VA but I am hoping that they will refer me out to see a specialist at the Cleveland Clinic or something like that. I have checked out the ClusterBuster.com and some of that is a little far out there for me to be honest. I dont doubt that it's effective but I dont know that I am comfortable going down that road, at least not yet. I am willing to try the o2 option. Any suggestions on how to get started here? I'm no welder, nor do I even know where to begin. The ER doctor at the VA actually recomended it to me believe it or not... So I'm all in. I just have no idea on what to get, how to use it, how much... all of that... Thanks again... Pat |
Title: Re: Suffering in Ohio Post by bejeeber on Oct 10th, 2010 at 4:58pm
Hey Pat
For good info on how to get going with the O2, you'll see an awful lot of us recommending the oxygen info link hopefully viewable for you to the left of this page. It covers the high LPM/non rebreather mask aspects that make O2 use so much more effective than the lo flow/rebreather approach still ignorantly clung to by medical professionals. Many of get us a prescription from the doc for O2, then just completely disregard the instructions for flow rate. You'll probably need to mail order a regulator and mask. If stuck without an O2 prescription, lots of CH'ers just go rent tanks at a welding supply place (they're the same as "medical" O2, no welding knowledge required). |
Title: Re: Suffering in Ohio Post by Guiseppi on Oct 10th, 2010 at 5:42pm
Ask your doc for a prescription. High flow oxygen, 15-25 LPM, with a non re breather mask. Then call your local oxygen distributor, I use APRIA they're all over the country. They will deliver the gear and you're good to go. Been a life saver for me!
Joe |
Title: Re: Suffering in Ohio Post by Brew on Oct 11th, 2010 at 7:51am
Your local VA may have its own supplier contracted for providing O2. Talk to one of the advocates there.
|
Title: Re: Suffering in Ohio Post by coach_bill on Oct 11th, 2010 at 3:34pm
Pat,
Coach bill here From good ole Cleveland OHIO. I do use the clusterbuster method... dont worry about the dark side... We got cookies. You still got 1 thing going for ya. You got the #1 ranked collage team in the nation!! Coach Bill |
Title: Re: Suffering in Ohio Post by Katie C. on Oct 26th, 2010 at 12:51pm
Pat,
Don't worry about not having the same symptons as others. For years I could lie still in a cold, dark room and find peace. A couple of years ago that stopped working, and there is nothing I can do now other than rocking and clutching on to my head as tight as the pain will allow. Sometimes I can barely walk, sometimes I get sick, sometimes I can't speak, sometimes I just wimper and cry. Remedies that once worked have absolutely no affect anymore. Days that I used to get hit have turned to nights that the beast visits. I haven't slept a full night in over 6 weeks. Finding a doctor that you trust is paramount. And finding one that will listen to you and work with you is just as important. Continue to do your own research. Good luck to you. From a fellow CH sufferer in OH, Katie |
Title: Re: Suffering in Ohio Post by Pat_Ohio on Oct 27th, 2010 at 12:38pm
Dang Bob...
That's great info dude... Thanks!! |
Title: Re: Suffering in Ohio Post by mikstudie on Oct 27th, 2010 at 4:33pm
Pat,welcome sorry you had to find us but glad you did.
The 02 seems to be a favorite and my next cycle I will have it aboard. The imitrex nasal spray works great for me on the bad hits 5/10 min abort. Melatonin 10mg 1 hour before bed stopped my night time visits from the beast. Red Bull at the first sign of a hit chug it and it can help with the lenth and severity of an attack. Wishing you PF days. |
Title: Re: Suffering in Ohio Post by Arde on Oct 29th, 2010 at 10:08pm coach_bill wrote on Oct 11th, 2010 at 3:34pm:
Ha Ha Ha!! Ya got the Browns. Really did enjoy there game last weekend, the trick plays, especially the fake punt. Ballsy, especially trying that from your own end of the field. |
Title: Re: Suffering in Ohio Post by coach_bill on Nov 2nd, 2010 at 6:41pm
Go Browns!!
P.S. I watch the Texans get ripped to shreds last night. Coach Bill |
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