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Topic: Hello... (Read 259 times) |
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caseman
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I love YaBB 1G - SP1!
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I am new to this site but have been suffering with "chronic" cluster headaches for about a year. It all happened so quickly for me. In July of 05 I began to get a minor throbbing pain behind my right temple and my right eye was slightly red. Within a week the pain was constant and pretty severe. Also, the redness in my eye got worse and started to tear. Eventually, I went to see my doctor who thought I had an infection and sent me to an eye doctor. The eye doctor didn't find anything wrong with my eye and sent me home. The pain and redness continued for a couple more days until one night, when I woke up, I could not feel my left side. On this night, I got out of bed to use the bathroom and fell to the floor. I quickly realized that my side was numb and thought I was having a stroke. My wife helped me into the bathroom where I saw that my pupils were completely different in size. My right was constricted and my left was dilated. Around this time my wife called 911 and I really started to panic. I started vomiting and was gasping for air. Also, I began shaking uncontrollably and really freaked out for lack of a better term. After about 10 minutes of this (the longest 10 of my life) the paramedics arrived and immediately gave me o2. When they checked my vitals my pulse was 240 bpm and my bp was 220/140. I really started to feel better after we arrived at the hospital and I was on o2 for several minutes. I eventually made a full recovery and was released about 8 hours later. The hospital doctor's diagnosis was that I had a "mini stroke". During the time in the hospital my wife, and everyone else, noticed that my right eye was very red, much more red than normal. At one point, my wife thought my eye was actually bleeding it was so red. The next day I went and saw a Neurologist who was referred by my doctor. I was still in severe pain behind my eye at this time. After telling the Neuro about the incident the night before he scheduled me for an MRI and changed his diagnosis from an eye infection to possible cluster headaches. The Neuro, who is said to be an excellent doc, stated that cluster headaches can cause symptoms similar to a stroke. The Neuro stated that the incident, along with the head pain, red and watery eye, and runny nose were all signs of this condition. I was given immetrex (?) and Motrin es and sent for the MRI which, of course, showed nothing. So I went back home miserable and paced around the house in unbelievable pain for a couple more days. The next week I had 2 more incidents similar to the "mini stroke" and was hospitalized for both. All 3 of the incidents started when I would wake up in the middle of the night with an urgent need to urinate. After waking the same symptoms happened. I began to shake violently, my side went numb, I couldn't breathe exc. Each time I went to the hospital, I started to feel better when I was given hi flow o2. This same type of incident has happened many times since January of 06. Now, however, as soon as the symptoms start, I take several deep breathes and eventually recover without any further hospitalization. On my second trip to the Neuro he explained to me that vascular headaches and cluster headaches are very similar. The Neuro stated that it appears the blood vessels behind my right eye and in my brain are constricted for what ever reason. The Doc said that I continue to have the episodes similar to strokes because, at times, I am not getting enough blood and o2 to my brain and my body is reacting to that. The numbness apparently occurs when my blood flow is inadequate. When I take several deep breathes my blood flows better and I recover. I know this is long but I have been truly suffering for the past year. Since then, the redness and tearing in my right eye has continued. The pain has become almost continuous and is very severe. I'm sure a lot of you can relate to this when I say that it is ruining my life. I am 2 semesters from my master’s degree in business (MBA) and my wife is 6 months pregnant. I have gotten to the point where I pace around scared and wondering when the next attack is going to hit. That really is not fair to my wife and my family because I have not really been there for them like I used to be. Thank god she is a wonderful and understanding person who is always there for me when i'm out of my mind in pain. Anyway, my doctor's have diagnosed me with chronic cluster headaches. I have been on immetrex, Zomig, Prednisone, Verapamil, o2, Depakote exc for treatment and Oxycodone 30 mg and Motrin for sudden pain. None of the treatment meds have worked at all. The oxycodone is OK and takes some of the pain away some of the time but i'm still miserable most of the time. My doctor tried me on Morphine 30 mg but it made me feel sick and I couldn't keep my eyes open. These cluster headaches have been horrible for me as i'm sure it is for all of you if you are on this site. I'm just worried that I will have to deal with this for several more years. I don't know if I can do it. I long for the days when I was pain free. Hopefully we will all get back there eventually. Well that's my story, feel free to comment.
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MJ
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Re: Hello...
« Reply #1 on: Oct 17th, 2006, 12:28am » |
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Hi caseman
Doesnt sound fun.
A question? you mention the pain is both constant and subsides with oxgen or deep breathing.
How long does the actual pain last and does it reoccur frequently or just never goes away?
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MJ
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Barry_T_Coles
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Re: Hello...
« Reply #2 on: Oct 17th, 2006, 12:55am » |
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Hi Caseman
Welcome, sad you’ve had to find us but you’re in very good company.
What the people here don’t know about our condition isn’t worth worrying about.
Go to the links to the side and read all you can, one of the best weapons in the fight is knowledge.
My fave abortive is o2 for the big hits & for the lighter hits Red Bull or any other energy drink with high levels of Taurine & caffeine.
I can’t help with the meds side of the equation as I don’t use them myself but others will be along shortly and will point you in the right direction.
Kind Regards
Barry
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Worry is like a rocking chair it gives you something to do but gets you nowhere.
http://mushys.com/kiwi
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bothofus
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It's got to get better !
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Re: Hello...
« Reply #3 on: Oct 17th, 2006, 4:30am » |
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Hello Caseman and Welcome,
Mercy !!!!!
First off, did the doctors give ya anything for your VERY HIGH BLOOD PRESSURE? WHEW, please be careful with that.
I am no doctor, but it sounds like you have at least two conditions with the BP and headaches. The verapamil didn't help with the HA? What dosage were ya on for that and the other meds?
Take care,
Carl
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caseman
New Board Newbie
I love YaBB 1G - SP1!
Posts: 10
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Re: Hello...
« Reply #4 on: Oct 17th, 2006, 8:31am » |
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on Oct 17th, 2006, 4:30am, bothofus wrote:Hello Caseman and Welcome,
Mercy !!!!!
First off, did the doctors give ya anything for your VERY HIGH BLOOD PRESSURE? WHEW, please be careful with that.
I am no doctor, but it sounds like you have at least two conditions with the BP and headaches. The verapamil didn't help with the HA? What dosage were ya on for that and the other meds?
Take care,
Carl |
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Well according to the ER doctor my bp was so high on the night at the hospital for 2 reasons - 1- I panicked when the symptoms started, and 2- my body was trying to compensate for the lack of blood and o2. The doctor said that my body sent all of my vitals way up when it found that their was a problem. But most likely it was so high because I freaked out for lack of a better term.
My bp is normally a little high though 130/90. I am on Atenolol 100 mg for it. It seems to be under control now. I tried Verapamil for about a month but it made me extremely constipated. It got so bad that I just could not go even with laxatives and enemas exc. The doctor took me off it this past June.
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| « Last Edit: Oct 17th, 2006, 8:48am by caseman » |
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caseman
New Board Newbie
I love YaBB 1G - SP1!
Posts: 10
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Re: Hello...
« Reply #5 on: Oct 17th, 2006, 8:44am » |
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on Oct 17th, 2006, 12:28am, MJ wrote:Hi caseman
Doesnt sound fun.
A question? you mention the pain is both constant and subsides with oxgen or deep breathing.
How long does the actual pain last and does it reoccur frequently or just never goes away?
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Well most of the time I have a stabbing feeling behind my right eye. Often it is fairly dull but it is almost always there. There have been a couple of days where I did not feel any pain for a while but most of the time I am well aware of it. My headaches get very severe usually 3-4 times per day and last for about 1 hour. I don't know about you guys but for me they just come on with no warning and are horrible. Sometimes I even vomit when the pain is bad. The doctor said that it is not common but it happens with some patients because of the severe pain and the patient basically getting so worried about the oncoming attack. I guess i'm getting myself so worked up and tense that it happens. I need to try and relax but I often find myself pacing around the house all day thinking about when the next one will be. Just to clarify the o2 and the deep breathing help me as far as getting rid of the numbness on my left side and the trembling. It may work a little for the pain but not enough to make a real difference.
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| « Last Edit: Oct 17th, 2006, 8:57am by caseman » |
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MJ
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Re: Hello...
« Reply #6 on: Oct 20th, 2006, 11:54pm » |
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Caseman welcome, sounds like the real deal.
Sounds like you have a good doc too. He's right on the panic thing.
Clusterheads are a tough bunch and at some point we all needed to learn to relax and live life between the hits. The more you worry and get worked up over the hits the worse they will be.
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MJ
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George_J
CH.com Alumnus
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White-Breasted Nuthatch
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Re: Hello...
« Reply #7 on: Oct 22nd, 2006, 1:18am » |
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on Oct 17th, 2006, 8:44am, caseman wrote:| I guess i'm getting myself so worked up and tense that it happens. I need to try and relax but I often find myself pacing around the house all day thinking about when the next one will be. |
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It's very difficult to learn not to panic when you feel a hit coming on, and I don't think you can learn it overnight. It took me ten years. But once you learn to accept a hit with some measure of calm, you'll see that it makes a huge difference.
Best,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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