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New member from alabama (Read 4753 times)
Buddha_hotei_boy
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New member from alabama
Jun 24th, 2014 at 5:35pm
 
Hi everyone I am a new member from mobile, al. I just got out of the hospital for my second hospital stay in less than a month with what has been diagnosed by my hospital appointed neurologists(I am told they are the best In the area) that I am either suffering from cluster headaches or migraines. After reading through quite a many posts I am all most certain it's clusters. I am looking for help from anyone in my area.
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Hoppy
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Re: New member from alabama
Reply #1 - Jun 24th, 2014 at 6:22pm
 
Hi and welcome,
Have you taken the cluster quiz? the link is to your left
on this page, it might help answer some of your concerns.

Hoppy.
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BobG
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Re: New member from alabama
Reply #2 - Jun 24th, 2014 at 6:43pm
 
Good advice from Hoppy. There is a big difference between cluster headaches and migraines.
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Buddha_hotei_boy
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Re: New member from alabama
Reply #3 - Jun 24th, 2014 at 8:57pm
 
I have taken the 16 question ch.com quiz and a lot like my results I am still in the dark. I answered yes to two of the first 8 and the results say that if you answer yes to a few or more of those questions it's unlikely you have CH and I answered yes to all but 2 of the last 8. Meaning it's likely I do have ch. I will explain my story: June the first of this year I developed headache that hasn't quit as of yet(I know this sounds more like a migraine) but and it's a big but I develop 8-10 on Kip scale about 6-8 times a day that develop around and behind the left eye. It feels like "satan is raping my left eye." As I told the nurse at the er. I do develop nausea but I believe it's from the pain raster than the headache itself. I can sleep with the lesser constant type headache(maybe 6 or 5 on the kip scale) but when the 8-10s start it wakes me from the deepest of sleep. In the hospital they tried imitrex pills, migranol, topamax(which landed me with a two day stint on the crazy ward. Now I am 1000 mg er depacoate for almost a week with no relief. I am loosing my mind in pain. There has been more but it seems as if I am developing an 8-10. Please help. Oh o2 did nothing in the hosopital although I blieve it was not up high enough
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Jimi
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Re: New member from alabama
Reply #4 - Jun 24th, 2014 at 9:11pm
 
It certainly sounds like ch's. Early on when I had nothing to abort with I too got nauseated after awhile. The 02 needs to be a very high flow of at least 15 lpm even better at 25 with a non rebreather mask. I hate that drug that you are on. You might read about the D3 regime that many are having luck with along with the 02. Good luck.
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AussieBrian
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Re: New member from alabama
Reply #5 - Jun 24th, 2014 at 9:16pm
 
G'day b-h-b, and welcome. We truly hope it's not CH but you've come to the right place anyway. Symptoms can be very confusing, especially at the beginning.

Consider also that there are ugly cousins to CH that are similar, so try googling paroxysmal hemicrania and see if it rings any bells. Hope so because it's quite easily managed.

Keep searching, mate, and we'll keep helping.

Full steam ahead and damn the torpedoes,

Brian down under.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Buddha_hotei_boy
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Re: New member from alabama
Reply #6 - Jun 24th, 2014 at 10:00pm
 
Good evening,
   After a good bit of walking the pain has relinquished it's grasp on me for now. I have read up on everything headpAin related and it keeps bringing me back to ch. The paroxysmal hemicrania duration of 30 minutes leads me to believe it is not the responsible party, as with the greaTer intensity headaches last atleast an hour and usually two hours. I recieved an rx for estcyk(acetaminophen phenobarbital and caffiene)but all it does is make me look like a drunk lunatic banging on my head with no control. My neuro said not use it because it would only exascerbaTe my condition but this med is rx for migraine headaches. If he thinks May have migraines why would he recommend I not take this med? Also one very kind older er doc prescribed me dilaudid for the pain. In the hospital one of the only things my pain would respond to was morphine or dilaudid but once they spaced at once every 6 hours plus instead of every two or three it became contraintuitive to take it because I would get one -2 hours relief and be left with 3-4 hours of relentltess Kip ten pain(later informed these are called rebound headaches. Although I would label them more as slowing the beast. It may stop it for an hour or two but it only extends the pain in the long run almost doubling the length of time as well as maintaining the initiall intensity if not increasing it. So when the steady on time supply wAs halted use just doubled the pain:( plus I enjoy opposites a bit to much. That's for another post. I guess I am asking does the opiates help others much? I know UTFSE (use the folorgned search engine) Uh, the dep makes me ramble on and I feel it has more mood all tearing effects than it helps with migraines. Everything just feels a lll greyer.

Bubba a.k.a buddha_hotei
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Mike NZ
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Re: New member from alabama
Reply #7 - Jun 24th, 2014 at 10:50pm
 
Hi and welcome

Opiates rarely have any place in managing CHs. Even the strongest opiates don't really touch the pain of a CH and there are all the negative issues such as dependency, needing ever increasing doses to get the same effect and rebound headaches too.

When used for migraine, opiates can have some use under careful use but they can still have all the negative issues as above.

You really do need an accurate diagnosis before you can jump onto what medication to use both to prevent them from happening and to kill them off when they start.
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Buddha_hotei_boy
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Re: New member from alabama
Reply #8 - Jun 24th, 2014 at 11:06pm
 
I return to the neurologist in two weeks and calling asking them to move up the date only gets a call back from the nurse saying they are so busy and the only thing they can do is readmit me to the hospitL in which they ramp me up on steroids and iv depakaine then start migrainol treatments only to stop three into it and then my Bp increases and they can't try them anymore. Two weeks until my next appointment with all this pain scares me. It's been less than a month I am scared to sleep all ready. The worst of the worst always wake me up here in about an hour and a half. I am missing so much work I am gonna loose everything I don't want this to define my family or life!!!!

Does anyone else experience the longer lasting(almost a month now) tollerarble yet unrelenting headaches?
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Mike NZ
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Re: New member from alabama
Reply #9 - Jun 24th, 2014 at 11:41pm
 
Buddha_hotei_boy wrote on Jun 24th, 2014 at 11:06pm:
Does anyone else experience the longer lasting(almost a month now) tollerarble yet unrelenting headaches?


I've had two long duration ones. The first was after a concussion where I had a tension-like headache that was tolerable but it lasted several weeks. The second was a migraine that lasted 25 days even though I did everything I could to kill it.

Headaches are a complex area of medicine with a very large number of types and treatments. It is why we strongly recommend people see a headache specialist.

People with CH certainly understand what pain is, especially before you get a definitive diagnosis and treatment, so we certainly sympathis with what you're going through.
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Hoppy
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Re: New member from alabama
Reply #10 - Jun 25th, 2014 at 12:00am
 
I'm sorry to read your having such a rough time, but try
and be strong, their is light at the end of the tunnel, believe
me we've all been there and it's just a matter of getting
the right meds that work for you, because it's all a case
of trial and error. For now pop out and get some Red Bull
the one with Taurine and slug it back, this is known to help.
When you get to see your neuro talk with him about getting
an MRI or CT scan to rule out any other nasties, also ask
about going on Verapamil as a prevent with a Prednisone
taper dose, and some Imitrex auto injectors as an abortive.
These meds seem to work best for most of us clusterheads

Best, Hoppy.
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« Last Edit: Jun 25th, 2014 at 12:02am by Hoppy »  
 
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Buddha_hotei_boy
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Re: New member from alabama
Reply #11 - Jun 25th, 2014 at 6:53pm
 
I wanna say thank you to everyone here for the wealth of information. While in the hospital the neurologists ran me through the "million dollar" work up an exam. Ct scans, MRI, MRA, lumbar puncture, EKG, labs, and eventuLly the trial and error meds. And everything has come back negative for the headaches to be a secondary cause of an larger problem. A huge load off my mind as my family has a history of brain tumors as well as strokes and aneurysms. My issue which I would guess is everyone's issue here is the way the pain takes center stage until you learn how to control your Beast. And I know everyone has their own beast to control. I found myself at four o'clock this beating my face and head like I was fighting myself for a world championship. It scares my wife and children when 8+ headaches come on. But when they are 7 or below I know they can't help but wonder of the pain from before was really that bad or over exaggerated. I have tried the red bull and to no avail. I am so exhausted I just want to sleep all day to prepare for the following nights fight.
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BobG
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Re: New member from alabama
Reply #12 - Jun 25th, 2014 at 8:13pm
 
Hoppy mentioned Prednisone and Verapamil. I think you should talk to your Doc about them. The Pred is a 7-day taper steroid. The Verap is blood pressure med and is started at the same time as the Pred. The Pred usually knocks the clusters down after just a couple of days.
I use 5 hour Energy 2-ounce shots to stop the pain. It usually works (for me) in about 7 minutes. If no help after 10 minutes I'll do another shot. Down side of the shots is they taste like skunk piss.
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« Last Edit: Jun 26th, 2014 at 8:34am by BobG »  

Stay stressed. Never relax. Never sleep. Ever.
 
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Buddha_hotei_boy
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Re: New member from alabama
Reply #13 - Jun 25th, 2014 at 9:19pm
 
I am going to ask my doctor about the verapamil especially since my Bp had been running high while on the medrol(medose) pack(as I understand it these are prednisone) both where tapered doses ramped up very high and tapered down over 7 days. They are reluctant to try Bp meds because during the er trip prior to the one resulting in my second week long admission to the hospital my Bp was way high. Well the top number (diastolic more of an indicator of pain/stress) was 208 stroke/heart attack range. However my systolic pressure(the true indicator of long term Bp issues and imminent danger) was a only 80. I know 208/80 is not anywhere in the normal range The er doctor doing what they do recognized that as being a cause for headache and prescribed me clonodine, as well as escyk(spelling?) and diplaudid. As well as hitting me with three iv shots of dilaudid in an hour with zophran just to get the pain undercontrol. After those three shots I was walkin on sunshine and damn it felt good. My wife took me to the pharmacy to fill my scripts and then went home and took the meds like the good ole er doc said too. 6 hours later I wake up with a screamer around 9 and go to stand up and everything just goes blurry then white and I pass clean out. 8 minutes later I wake up to ems asking if I knew where I was and told him it looked as if I was on the floor. They took my Bp whie I laid there and it was 112/72. Stood up and before my knees had a chance to lock I I passed out on the ems guys. They load me up in the ambulance and when my arm was above my heart by Bp would become virtually non existent. The clonodine bottomed my Bp out. They admitted me upon entry to the er. It has been a rough month for me.

Can anyone tell me if the stacker 2 energy shots are as effective as the five hour energy drinks?
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Mike NZ
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Re: New member from alabama
Reply #14 - Jun 25th, 2014 at 10:55pm
 
Buddha_hotei_boy wrote on Jun 25th, 2014 at 9:19pm:
Can anyone tell me if the stacker 2 energy shots are as effective as the five hour energy drinks?


What you are looking for is something having both caffeine and taurine. Which energy drinks have this will depend on where you are in the world but common ones include Red Bull and Monster but there will be lots more.
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Hoppy
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Re: New member from alabama
Reply #15 - Jun 25th, 2014 at 11:55pm
 
Have you tried taking Melatonin 2hrs before going to bed
you need to take 10-15mg, it takes a couple of weeks to
build up in your system, but has a good record getting
you through the night without those wake up calls, you
can buy it over the counter at any pharmacy or drug store.
Also some folk get relief with Taurine 500mg pills the ones
with the powder inside, they take 6000mg taken in 3 parts
spread over the day, folk that take these is because of
heart conditions and can't take Verapamil. You can buy
these at any health food store. Another trick is to have
a really hot shower aiming the water on your CH side, also
ice from the freezer is another life saver for a lot of folk
wrapping it in a cloth and soaking your whole head and
the back of your neck. hoping these few tips can help
relieve some of your pain.

Good Luck, Hoppy.
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Batch
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Re: New member from alabama
Reply #16 - Jun 26th, 2014 at 1:40pm
 
Hey Bubba,

We know what you're going through and the good news is it doesn't need to be that way.  Ask your PCP for the lab test for 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure it's status.

I realize this may sound off the wall but the odds are you are vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your headaches.  The normal reference range for 25(OH)D is 30 to 100 ng/mL. Unfortunately, most physicians will say you're results are normal at a serum concentration of 31 ng/mL so ask for the actual serum concentration when the results come back... 

As a headache sufferer and likely CH'er, you need to maintain a target 25(OH)D serum concentration around 80 ng/mL to prevent your CH.

Call your PCP's office and have them write the Rx for the 25(OH)D lab test.  If that doesn't work and it looks like it's going to take more than a few days to get the lab test... I'd start the anti-inflammatory regimen with 10,000 IU/day vitamin D3.

Over the last three years 400 to 500 cluster headache sufferers (CH'ers) have started the anti-inflammatory regimen of vitamins and minerals with 10,000 IU/day vitamin D3.  80% of them have experienced a significant reduction in the frequency, severity and duration of their CH.  75% experienced pain free 24 hour periods and 60% remain essentially pain free.  It's equally effective for episodic and chronic CH'ers.  This regimen is also >95% effective for Migraineurs in preventing their headaches.

The "Go To" link with info on all the anti-inflammatory supplements, their doses, drug interactions and contraindications follows:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

The following table represents the latest list of anti-inflammatory regimen supplements and doses:

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I've found the following supplements shown by brand in the photo below are formulated with the supplements we need at the right dose.  I buy them at Costco, but you should be able to find similar formulations at most supermarkets, Wall-Mart, the Vitamin Shoppe or over the internet:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

The vitamin B 50 is not shown.  You’ll need a 3-month course of vitamin B 50 to handle any deficiencies among the seven B vitamins.  Although the Super K with vitamin K2 complex isn't essential in preventing CH, it is needed to handle the increased serum calcium made available by taking vitamin D3 at the doses we take.

There are a growing number of studies finding the super K2 complex helps direct calcium away from soft tissues and arteries directing it instead to bones and teeth improving overall bone mineral density.

There are also a number of studies that have addressed the optimum ratio of calcium-magnesium supplements.  The general consensus is to keep these two supplements at a 1:1 ratio.  Many have found 400 mg/day sufficient.

Most CH'ers who have started this regimen in the last year and had their 25(OH)D results come back below 30 ng/mL, have used the accelerated vitamin D3 dosing schedule and found it got them pain free faster than taking the maintenance dose of vitamin D3 at 10,000 IU/day...  The dosing accelerated vitamin D3 dosing schedule follows:

On day one, take the entire regimen with 10,000 IU/day vitamin D3 and two of the Omega-3 Fish Oil liquid softgel capsules along with one each of the remaining supplements the first day.

If there's no allergic reaction to these supplements (very rare), take 20,000 IU/day vitamin D3 for the next two weeks along with the rest of the regimen.

In addition, for the first two weeks take a 50,000 IU loading dose (ten of the 5,000 IU vitamin D3 softgels) once a week on top of the daily dose for two weeks.  The day of the loading dose you'll be taking a total of 70,000 IU vitamin D3.

After two weeks on above vitamin D3 dosing schedule, stop taking the once a week loading dose and lower your daily vitamin D3 intake to 15,000 IU/day. Continue at this dose for another two weeks then lower the vitamin D3 intake to a maintenance dose of 10,000 IU/day.  At that point see your PCP for another lab test for 25(OH)D.

If you total the vitamin D3 doses you'll be taking 600,000 IU vitamin D3 over the 4 week period.  This should elevate your 25(OH)D serum concentration by 60 ng/mL, (150 nmol/L) above your starting level.  Assuming that starting level was less than 30 ng/mL, (75 nmol/L), your serum concentration should be around 85 ng/mL, (212 nmol/L).

If you're like most of the other CH'ers who start this regimen, you'll experience a favorable response within the first week to ten days.  Migraineurs sail through their usual cycle times with nary a twinge...

Take care and please keep us posted.

V/R, Batch
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Buddha_hotei_boy
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Re: New member from alabama
Reply #17 - Jun 26th, 2014 at 9:25pm
 
Thank you for the replys hoppy and batch. I take melatonin every night. About 6 months ago my levels were checked while I was testosterone theraPy after those levels came back low on labs. Vd came back low so the good doc put me on d3 at 1,000iu daily. I am open to trying anything right now. I have to get basck to work the bills just keep piling up. It's getting to put a ton of stress on the family. Embarrassed
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Re: New member from alabama
Reply #18 - Jun 30th, 2014 at 2:56am
 
I would start the D3 regimen ASAP,I was in a very similar situation to you,missing work,getting the nighttime screamers every night many nights I was waking up several times,my days werent much better with lingering shadows and feeling like I had been beaten severely about the head the night before. My marriage was collapsing. I found this site and figured out that I must have clusters weeks before I could get in to see a headache specialist. I started taking the D3 regimen at 20k IU per day and noticed a change within a few days,after about a week my attacks stopped completely. I was still dealing with shadows and my neuro put me on verapamil which helps a lot. This isnt a cure,there is no cure but its working today for me and many many others. You are really kicking yourself if you dont scrape up 20 dollars in change and run down to walmart this very minute and start eating this stuff...shoot
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Re: New member from alabama
Reply #19 - Aug 18th, 2014 at 11:07pm
 
These folks love you...take shrooms and be done with it. IMHO
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« Last Edit: Aug 18th, 2014 at 11:08pm by dennisoc »  

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