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Newbies. Help us...help you (Read 85553 times)
Ricky
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Re: Newbies. Help us...help you
Reply #175 - Aug 23rd, 2012 at 5:50pm
 
Hi everyone,
        My name is Ricky McConnell, I am 42 years old and live in Murfreesboro Tn. I was diagnosed four years ago with cluster  headaches. I get them about twice a year right now. It has been a year since my last cycle, and i am going thru one now. I am taking Isometh-D-ChloralPhenz-Apap. It is used for migrane sufferers i think. I usually get two or three headaches  a day, mostly 2 hours after i go to bed, around 1-2 am. The ones in this cycle seem to be worse than the last. Does anyone know if they get worse the longer you have had them ? I just found this sight today and i look forward to maybe finding a more effective drug or treatment.

                            Ricky
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Hamby
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Re: Newbies. Help us...help you
Reply #176 - Aug 24th, 2012 at 10:53am
 
Hi Everyone.  I live in Columbus, OH, am a 41 year old male and have 3 kids.

I was diagnosed yesterday (23Aug2012) with CH by my primary care doctor.  She is scripting me a steroid taper, but she hasn't called it in yet (been to CVS twice now).  I hope to go get it this morning  Angry.  I am also going for an MRI of my head.

In 2001, I had a few of these headaches over a 2-3 week period.  My doctor at the time diagnosed me with migraines and gave me Imitrex.  Over the years I have had periods where I had these headaches, but never like the current episode, so I didn't seek additional treatment or care (although I went to the ER a few times).

So, 9 days ago I started having these headaches.  They are always the same in presentation, but the time of onset has varied a little.  I have had 12 of them in the last 9 days.  Essentially, they are behind my left eye, cause tearing and a runny nose.  The pain is sharp, like a knife.  It takes 20-40 minutes to ramp up to maximum intensity and then lasts about 1-2 hours.  Then they are gone as fast as they arrived.  I'm completely pain free between headaches.

The timing does vary.  I have had 3 during the day, all 3 starting at about 2 pm.  The nighttime ones come between 9pm at the earliest to 2am at the latest.  But most have come between midnight and 1am.  They wake me from sleep.

As of now, I am tired from interrupted sleep.  It is affecting my work productivity.  I feel hazy or fuzzy, like my memory is affected.  I miss work when the headaches come during the day.  And I have constant anxiety that another episode is coming.

I am new to CH's and am a true newbie.  I've heard of them before and know there are often referred to as Suicide Headaches.  Now I know why.  I lurked yesterday in the forums and tried to find online info.  But, this is all very overwhelming and anxiety producing.

I've taken all the OTC meds, but nothing helps.  I even had a few percocets (3) left over from an old surgery.  They didn't help either - in fact, all they did was ensure that I couldn't sleep after my headache was over. 

I have seen treatments in the forum here and may ask for O2.  My only question at this point is:

Do steroid tapers often work?  How long do they take to work?

Thank you so much.  I am grateful to have a place to find support.
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Mike NZ
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Re: Newbies. Help us...help you
Reply #177 - Aug 24th, 2012 at 3:36pm
 
Hi Hamby

CH is something that most people need to work with a headache specialist for as it's pretty rare and even most neurologists just don't have the training or experience in this area.

A steroid taper will normally be pretty effective in a day or two at blocking off CHs, however you should be starting a longer term preventive, like verapamil, lithium or topomax in this period which gives it time to build up to an effective dose before the steroid taper completes.

Your experience with OTC meds is very common. Even the strongest narcotic painkillers hardly touch the pain of a CH, which is why we try to abort our CHs as quickly as possible using something like oxygen or imitrex injections.

You've found a place where everyone does understand CH. Keep reading and asking questions.
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Hamby
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Re: Newbies. Help us...help you
Reply #178 - Aug 26th, 2012 at 12:19am
 
Thank you Mike. I will be calling my primary doctor on Monday to get a neurologist referral. I see on the Ouch website that there is a doc in my town who is recommended.

I started my steroid taper on August 24th. 24mg methylprednisolone. Dose is tapered by 4mg per day for 6 days. I do not have a script for any preventative therapy. I had a CH last night despite my first dose of the taper. Now I'm afraid to go to sleep.

Thank you for the advice. This is a great website
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amtphd
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Re: Newbies. Help us...help you
Reply #179 - Aug 31st, 2012 at 9:04pm
 
Hi. I have been a member for a while, but without posting. I am headache free at the moment, so it seemed like a good time to put down the basic info. I am 55, live in Guelph which is just west of Toronto in Ontario Canada. I have suffered from episodic cluster headache for many years, but of course it was not diagnosed for some time. I've had sinus surgery (useless) and a myriad of allergy pills, stress pills etc. I read about cluster one day about 12 years ago and asked my then new family doctor. He's great. He said "I'm not an expert, but it sounds reasonable." He sent me to a neurologist who confirmed.
When I am in a cluster cycle I get hit about 90 minutes after I go to sleep. I take verapamil while in cycle and zomig during attacks. I am a big believer in oxygen, it has been a life saver for me. I am lucky I guess that now the headaches don't reach the 8-10 level, they peak at a wildly uncomfortable but coping possible levels. My cycles last about 6 weeks and then disappear for 12-18 months. The gap seems to be getting longer (fingers crossed).

I have started the vitamin D program Batch suggested. I had been taking D for a while, but have upped it and added the other factors. I have not found the red bull approach helps, but I drink a lot of coffee so perhaps it is hard to make a difference.

I have found that at this point the cycles are horrible, but I can keep working and during the day function reasonably well. I am, just tired. The nights are horrible, but with O2, verapamil and zomig I have reduced the hits to one or maybe 2 a night.

I came out of my last cycle at the end of June, so I am hoping for a long break, but I am always curious about what is going on in the cluster world.

Sorry for a long post, but I tried to be thorough.
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Clusterman59
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Re: Newbies. Help us...help you
Reply #180 - Sep 11th, 2012 at 3:52pm
 
Hey Guys, I am going to attempt to tell you a bit about my Cluster history and Meds... Right now I am being treated by Dr.Gene Kallenberg President of family medicine at UCSD San Diego California. He has been treating me for about 8 years for 17 operations I had all major and has been treating me for my Clusters for 8 years as well. I am now using topirimate 400mg daily with some success and pure 02 for several years now. Both the 02 and the topirimate are not working well anymore.
In the past I have used prednisone, ergomar, and my Dads a dentist and gave me novacaine blocks all with no success and imitrex with good success but was only offered tablets and with 20+ clusters daily they thought it was to dangerous to take so much of it . I was never offered injections....This was about 5 years ago and I don't know if they were available. Before Dr. Kallenberg I suffered because in the beginning when i was 15 till iwas 30 i was never diagnosed properly and was told I had some kind of "Super Migrain" thats exactly what the neurologist said and prescribed codine??? That did nothing but give me horrendous rebound headaches so what I ended up with was going to a hypnotist who taught me self hypnoses and and taking 200 excedrin weekly and getting ulcers I had 3 by the time I was 30. I then went into a 3 year remission and when they came back i now get them every year from April to Oct.
Guy's I am scared out of my mind! The clusters I am getting now are so much worse! Over the last year they have gradually have gotten worse and worse and especially over the last three months and last night was the kicker!! I thought my eye was bleeding and nose and was partially blind even in my other eye?? that is a new symptom and has happened twice now were I can't see 6" in front of my face and I was on the ground screaming which I used to do all the time when i was a kid but learned to hold in the screams, but not these clusters just way to powerful!, also duration is a bit longer than normal. Normally they last about 15 to 30 minutes and the last 10 have lasted about 30 to 40 minutes.
What do you think is happening to me? Do you think it's time for a specialist? From what I have read I thought Clusters were supposed to get better with age not worse?

John Fletcher 4459 Clairemont Dr.
San Diego, Ca. 92117
858-886-7805
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Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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Mike NZ
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Re: Newbies. Help us...help you
Reply #181 - Sep 12th, 2012 at 4:01am
 
Yes, it's time to see a neurologist who specializes in headaches to get an understanding of what is happening and why, then the right treatment for you now.

CH durations do vary, lasting up to 3 hours for some when not aborted, so durations of 40 minutes are not exceptional.

For your oxygen use, have you read the oxygen instructions on the link on the left? (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)

It is pretty common for CH to change over time, however when there are significant changes it is well worth getting a doctor to review things.
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AvonAng
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Re: Newbies. Help us...help you
Reply #182 - Sep 12th, 2012 at 11:53am
 
Good morning, all. My name is Angie and I say good morning because it is 8 am here in Tacoma, WA.  In the last four years, I have had periods of headaches/migraines off and on and have been diagnosed (or misdiagnosed) with a sinus infection.  My attacks happen for a period of 3-5 weeks usually separated by 6-8 months of relief. Usually prescribed an antibiotic with a pain killer such as hydrocodone and an over the counter medication like Mucinex. As of my recent attack, I began my research into my symptoms. Which has brought me here to you.

As a smoker, it was easy for me to believe that it might be a sinus infection although I never ran a fever and my lymph nodes were never swollen. My attacks usually occurred around stressful situations, ie. a big revenue audit, husband being laid off, etc. I've even went as far as to go to the dentist and had him remove a wisdom tooth here and there. I have no more wisdom teeth, not much stress, and was very frustrated when the attack I am now in, was diagnosed (again) as a severe sinus infection.

My headaches started three weeks ago just as that. Tolerable pain, two to three times a day, that usually went away within a half hour or so with the use of Ibuprofen 800. Then it happened. I awoke one night at 11:30pm with a pounding ache in the left side of my face that forced me out of bed to find relief. I grabbed a handful of IB800's (2 or 3 - I don't remember), a piece of toast, and an cold pack from the freezer. I keep these on hand at all times. As I sat there on the couch, rocking back and forth with this ice pack on my head in the dark, I cried.  What the hell is wrong with me? Not again?

I have tried to retrace my steps in the past weeks to see if I could relate the attack to something I did, ate, or was around that could have triggered it.  Finally, 45 minutes later I drift off only to be awaken 2 hours later with the same agonizing, throbbing, pain in the left side of my face. Again, more IB800, screw the toast, and a fresh cold pack and off to rock myself to sleep in the dark, alone, with only my tears to remind me "I'm still awake".

By the 3rd time I awoke (roughly 2 hours later), I knew that this was only the beginning of what I had feared. It is going to be this way for a couple of weeks. One week later, I knew I'd better go to the doctor. But, it was Labor Day. Doctor is golfing, or something... luckily my husband works as an engineer for a local hospital and around 8pm, he was driving me into the ER. The diagnoses? You guessed it. Severe Sinus Infection! Ug.

I was on Augmentin, Naproxen, and he even gave me Vicoden for the pain. Only 6. As the rest of the week went on, so did the attacks. At first the Vicoden helped after a half hour of taking it. I really thought they should make this stuff legal! I wasn't getting a 'high' off it, it was just going straight to the center of the pain and allowing me to cope, feel normal. 6 didn't last that long.

My father-in-law is suffering from degenerative disk disorder and he just so happened to have all the Vicoden I needed. He gave me 8 after calling him one morning in dire pain. It is Wednesday (9/5) now. My poor husband (who doesn't know how to fix me) went to RiteAid and picked me up a netty pot, still thinking it was a sinus infection. (If you ever use a netty pot, it is weird your first time. Shocked )

By Saturday morning of last week, he was driving me to an Urgent Care Clinic as the pain was so severe I was now vomiting, exhausted, and experiencing chest pains. He even asked if I knew I was only crying out of one eye?! Strange, didn't notice that before as I try to hide my pain and discomfort from my family. This doctor, Leigha, took an EKG to rule out heart attack, and began probing into my headache history. She asked my husband if the left eye (the side that hurt) always drooped like that.  After all was said and done, she mentioned the words "Cluster Headaches".

I have to say, after reading up on them, it fits the bill.  I have an appointment on 9/19 with a neurologist who specializes in headaches and migraines. By the way, that doctor did not prescribe me Vicoden, instead she prescribed Tordahl (sp) and gave me an injection right then and there. 

Since this, I have had fewer attacks. I even slept through the night on Monday! It's not over as I awoke with one this morning at 3:30am and again at 5:30am.  My last attack lasted 2 1/2 hours. Again, crying, I came to the computer to find possible home remedies as my body seems to becoming numb to the Tordahl (sp) and that is when I found clusterheadaches.com.

I don't know if anyone will read this, but I do know that I feel better knowing that there's sufferers out there like me. It also feels good to write it  down. I will keep you informed of my journey and if any offers of relief come my way, I will definitely share them. May pain free days come swift and thank you to all who contribute and support.
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Clusterman59
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Re: Newbies. Help us...help you
Reply #183 - Sep 12th, 2012 at 1:07pm
 
Hey Mike nz!
One thing I forgot to mention that I used to use all the time during the dark years  was Niacin It was a big factor in my self treatment for my Clusters....If i could pop 200mg of niacin quickly enough and get the "Flush" from the niacin then it would have a dramatic affect on my Cluster. Not always getting rid of it but lessening the pain by 50% and maybe 20% of the time it would get rid of the cluster completely so it was significant........Johnny
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Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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Re: Newbies. Help us...help you
Reply #184 - Sep 13th, 2012 at 3:41pm
 
     OK I think I am posting in the right spot now lol. My name is Jason. I am terrible at punctuation and spelling so get used to it lol.
     I just went to the dr. for the first time concerning my headaches. I dont have any medical conditions. My dr. was not surprised by my headaches and immediatly started asking all the questions I wanted to hear. Like when I get them, how long they last and so on. He said o2 is the best way for ch relief. But he dosent want to start there. He put me on fioricet. My first night on it was last night and no headache.....but that means nothing to me at the moment. Tonight I think I will wait to take fioricet until the headache shows it's ugly face and see what happens.
     I used to get these when I was younger (around 15). They dissapeared for years, and now this is my second fall season in the chicagoland area with these headaches. I dont remember them being as bad as they are but maybe I just dont remember.
     Before going to the dr. I stopped with the drinking and I dont bother with the mary jane anymore, which seemed to be a huge trigger.
     I have read a lot of posts here and I am still convinced that I suffer from ch's. I am supposed to go to a after party with my gf this saturday night and I am already looking for a way out of it Sad. She feels helpless while I am rolling around in bed moving my feet back and forth. While she rubs my neck and back she says "Am I helpng? Is there really anything I can do?" I say yes your doing great. Just having someone there helps out a bunch. What also helps is knowing about the ch's.
     This is my first time taking notes on how long the headaches last when they start and so on. I really want to get on top of this since losing sleep is really killing me at work. Anyone have any comments on fioricet? Keep in mind that I am a newb ty. Cool
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Linda_Howell
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Re: Newbies. Help us...help you
Reply #185 - Sep 13th, 2012 at 4:38pm
 
Since I was the one to start this thread along with Bob Johnson, I just have to say that this thread has deviated FAR from it's intended purpose.

We started this thread ONLY to alert newcomers to Please, please, please let us know where you live.  There is a reason for that.

We have sufferers all over the globe.  Bill Mingus has updated a place where sufferers could find a doctor in THEIR area.  That is what this was all about.  We wanted all newcomers to add their city and state.  No addresses or anything like that.  Just a place on each and every persons profile where we could help them find a sufferer recommended doctor for them.   The 29 pages here are NOT what Bob Johnson and I had in mind at all.  There are forums for newbies, forums for ch specific, forums for medications where you should post your questions to get answers.   The General board is for the fun stuff.  The stuff to make us laugh...because we need that too.

PLEASE just use this as an 'alert' to place "where you live" on your profile.

  Because all the posts here would be better served if placed in the right forum and much better seen by others and answered, I will lock this thread.   As I said..we just want the newcomers to add where they live in their profile so we can help them find a doctor if that is what they need, or maybe another clusterhead in their very own city to meet up with.

Thank you.  Linda Howell

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« Last Edit: Sep 13th, 2012 at 4:40pm by Linda_Howell »  

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