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My Long Drama & Diagnosis
« on: Dec 24th, 2007, 5:32am »
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Sorry for the novel!!!!  Brevity isn't one of my strong suits, but I've already read through this twice and cut out what I thought was pointless.
Late one night in the early Spring of 2000, my wife and I lay in bed talking about our day.  We were both exhausted, but enjoying more happiness and excitement than we had ever known.  She was rubbing my head, which was our arrangement for the nights when she wanted me to listen and I just wanted to fall asleep.  Then she said, “What’s this, there is a huge lump on your neck!”  
I was 24 years old, in good health all around, a teetotaler, and nonsmoker. I felt no pain, but the lump was huge and pronounced – at the base of the skull, left side, on the neck.  The first doctor I saw felt it and said, “There is nothing there but soft tissue – give it a month, and let’s see if it goes away.”  The lump receded, but my head began to hurt.  A month later, I had the worse headache I had ever had, coming and going all day every day.
In the year before this, I had gone from what is said to be the toughest graduate school program (Chemical Engineering) straight to building an e-commerce Website development company full time, with 18 hour days, 7 days a week.  I had one employee at the time – myself, but big plans.  I’ve read that many CH sufferers were shift workers, and that describes my life for many years – working until I fell asleep from exhaustion, then getting up to do it again, without an hour off for months at a time.  
My doctor prescribed 800mg ibuprofen tablets.  They took away the pain for a few hours each, and I popped them all day, until the doctor said I couldn’t keep taking them or they’d kill my kidneys.  6 months after that, and many tests and medications later, the senior doctor at the clinic said there was nothing wrong with me.  He patted my tummy and said, “Maybe lose some weight.”
The headaches came and went, but were especially bad at night.  Rather than waking me up from sleep, they started in the late evening and kept me from falling asleep.  I remember a year later leaving home late at night, driving to the single-room office I rented for myself and my 3 employees, falling into the bean bag in the corner, holding my head in my hands, thrashing around and crying until the sun came up.  Then I drove to the chiropractor so he could crack my neck, hoping for relief.  I tried steroid injections at pain clinics, two physical therapists, two chiropractors, massage therapists, four general practitioners, muscle relaxers, and others that I don’t remember.  
The docs never suggested that I create a headache or pain log, so I can’t say or remember how closely my pain during these years fit CH symptoms, but it was always left sided and debilitating when it hit.  I grew up with a father that had M.S., and a bed-ridden mother, and I knew people fled how little patience family and friends have for illness, so I hid my attacks from my wife and everyone else.  My wife knew I was in pain, but I would leave the room, go outside, or stay late at the office when I felt the headaches coming.
In November 2005, with 12 employees, I had coped with the pain, but my nerves were nearing a breaking point.  My sons were 6 years and 3 years old, and I was coaching my 6 year old’s soccer team.  However, I was dealing with severe insomnia and anxiety that never seemed to let up, as the pains in my head were hitting me all day, and the severe headaches were coming on strong almost every night.  I finally broke through my pride (with my wife’s nagging) and talked to my doctor, and started taking Lexapro for anxiety.  It helped a little, but not much.  I saw a Psychologist, and self-hypnosis helped a ton with the anxiety, but not with the pain.  I asked my doctor for pain killers for the really bad nighttime headaches, but he wouldn’t prescribe more than 10 Vicodin per month.  My wife was pissed off, and called him to tell him I was being tortured every night, and I needed drugs.  He seemed surprised, since I always seemed like such a “happy” person in his office.  I guess telling him I was having excruciating headaches almost nightly wasn’t enough, since I didn’t act the part in front of him.  He referred me to a pain specialist who diagnosed me with “Myofascial Pain” and prescribed Morphine Sulfate ER and Vicodin.
One year later, with 15 employees, my company seeing great success.  We had greater revenue and profit than we had ever had before.  I felt like a shell of a man, and every day that I went into the office I felt like I was going to crack.  Most days I would close the door to my office around noon, sit in my massage chair, and try to drive away the pain until the day was over.
Throughout 2007 I had begun to fell more fatigued, was frequently sleeping 12 to 16 hours a day, feeling numbness and tingling in my arms and legs, waking up with a feeling of “freezing cold” in my legs, and even the narcotics couldn’t beat away the headaches.   I was sleeping longer and longer every day, and my wife was getting more and more frustrated, afraid that our employees were noticing my absences.  She would rip the blankets off me, try to pry me out of the bed, but as the thought of how to lift my legs came to mind I would be asleep again.  I tried to tell her that I just couldn’t get out of bed, and our employees were used to me working late and coming in late, but she couldn’t help but be angry, especially since so many doctors had told her that “there was nothing wrong with me,” or suggested that maybe I just needed to see another psychiatrist or needed yet another antidepressant.
Throughout 2006 and 2007, my doctor ran every test he could for fatigue.  Hay fever, Mono, HIV, thyroid, etc., and everything came back fine.  The pharmacist told my wife it the morphine could cause my fatigue, so in May I stopped taking them, and after the withdrawals ended, I found out how bad my headaches had progressed.
My wife called and begged for an immediate appointment into Mayo Clinic in Scottsdale, even though our insurance wouldn’t cover it.  We scheduled MRIs, appointments with ENTs and other doctors, and waited.  Then, one weekend in mid July 2007, I crashed.  I couldn’t bring myself to finish a few urgent tasks that weekend, and my wife decided it was time to let our employees and clients know that I would be taking a leave of absence while we figured this out.  We met with my managers the next Monday to discuss this, and he thought they could handle things without me for awhile, and I sent a letter to our clients.
Starting in August 2007, Mayo ran every test they could, and their neurologist checked me out and started me on Topomax, which ended most of the tinling, numbness, and other symptoms I was having.  MRIs showed nothing.
The GP doctor at Mayo finally told me there wasn’t anything wrong with me other than what we came to them with (high blood pressure, etc).  The neurologist suggested I start a headache log, added Verapamil for my blood pressure, and setup an appointment with a headache specialist.
I documented my headaches every day for a month.  When I printed them out, they came to 9 pages.  The headache fellow said he was very impressed, and diagnosed me with chronic cluster headaches on the spot.  He increased the Verapamil to 240mg, and my daily headaches decreased 50% within a week, and gave me nasal Zomig as an abortive which worked 80% of the time for the worse headaches.  He also prescribed oxygen, so I got a huge J tank.  I get my first attack soon after waking up, suck up 15 Lpm for 10 minutes, and it’s gone.  I have found I get another hit every 2 to 3 hours all day, more frequently at night, but 10 minutes on the oxygen aborts them almost 100%.
My company is down to 7 employees now, and I’m still dealing with the fact that anxiety is a huge trigger for me.  I’m not sure where to go from here, with chronic CH and no remissions for over 2 years, and wondering whether I have the strength to pick up where I left off.  My wife still things that with the right drugs I’ll just head back into the office and be the superman I once was, but I just don’t feel like the same person anymore, and I don’t look at people or the world the same way now.   I do know that it feels better having days somewhat free of pain, at least with minor shadows, even if I feel tethered to a big steel tank much of the time.  But even when free of “pain,” I don’t feel the same “energy” that I used to, and I wonder if I’ll ever get that back.
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Re: My Long Drama & Diagnosis
« Reply #1 on: Dec 24th, 2007, 12:55pm »
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No need to apologize for the length, your life and mine  have mirrored in many ways including years of misdiagnosis. My best years were in my early thirties when it seemed nothing could get in my way and I just kept rising closer to the top. I could still work around the headaches because the durations of the episodes were much shorter and for whatever reason I knew they would stop in a few weeks.  
 As the episodes became longer I began to notice more and more triggers and began avoiding more and more situations. I still get a CH if I linger in the Detergent (with all the fake scents) section of the grocery store, have to pump gas on a humid day, walking in a room with failing flourescent lights and many others.
 I think the hardest thing for me to face and by far the most depressing was that I would never get back to where I was. I've lost or given up four jobs because of CH. I've come to understand why no famous people are currently running around winning Nobel Prizes and sufferring from CH it's because you physically can't maintain 100% of your potential.  Former clients still come up to me and ask what happened, "it's like you fell off the face of the earth and disappeared". I still get job offers I turn down because I know that things would well initially but it's very hard to sit in a room with twenty people, while you hold your hand over one eye and youre sweating like a pig and blowing your nose every other minute and giving one word answers to involved questions. Oh well, I can only play the hand I was dealt.
 On the other hand I've withstood a lot of pain where others have quit over a lot less. Now that my children are grown they respect me a great deal for what I/we have been through together. I didn't ask for it, I got it, I've tried to make the best of it.  
 It sounds as though you've already accomplished alot to be proud of, so you'll always be ahead of those who never made a effort. Don't try to set goals which are almost bound to fail - no need in our case to beat yourself over you head. Swallow alittle pride and get back into things at part time level maybe well below what you think your abilities are. Look for bright sides of things you never had time to notice before.
 As for physically feeling good, it's been so many years I wouldn't know what it felt like, so I just adjusted my scales.  
 I've gained an awful lot from reading on this site, knowing others are going through the same or worse,
and accepting life.
 Still beats life in a Soviet Gulag-Larry M
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Re: My Long Drama & Diagnosis
« Reply #2 on: Dec 24th, 2007, 2:46pm »
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Thanks for posting your story, some of it mirrors my own experience. What I mostly relate to is how CH changed my perspective on life, relationships and how I define success. I, too, lost a wonderful career aboard the cruiselines, a business, a relationship of 5 years and several friendships (or so I thought) with people who could not understand what I was going through and therefore had as many unrealistic expectations as I did for myself in the early years.  
I grew increasingly depressed and totally frustrated as I felt that noone was listening, let alone believing me, as I tried to explain what I was going through. Yep, I often felt suicidal and would spend weeks locked up in my shoebox of an apartment, afraid to go out into the world knowing that I could and would face an attack at any time. There were some very dark times.
I found this website in 2000 and I was amazed that there were others who were experiencing and coping with CH. The information was invaluable and in a relatively short period of time, I was able, with the help of an amazing neuro, get my CH under some semblance of control. Enough that I was able to go back to work, get remarried to an incredible man who was willing to educate himself regarding my condition, and make healthier and more supportive relationships with others.  
Although I still suffer with attacks almost constantly and I would give almost anything to not have CH, I have become a different, and I hope better person because of it. I have learnt so much about myself and what is important to me and have a level of compassion for others that I never would have believed possible. I used to think the measure of my success in life was how much money I made, but today it is more important how many times I laugh and bring a smile to someone elses face. A little pollyannaish maybe, but what can I say...I'm a big suck!
Anyhow, even though I don't know anyone on this board really...I come here for support, for information and for a sense of community with those who truly understand what challenges CH presents. And its people like you who share their stories that remind me how precious life is and how my attitude is one of my number 1 tools in maintaining my quality of life.  
As you can see, I ramble too! But hey, if I can't ramble here, who the hell else is gonna let me??!!
Peace and PFD&N's to all of us... Kiss
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Re: My Long Drama & Diagnosis
« Reply #3 on: Dec 24th, 2007, 4:02pm »
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You ramblers dispense far more useful advice to people then you will probably ever realize! Every...."damn that sounds just like me"...moment is a blessing for someone! Keep rambling away.
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Re: My Long Drama & Diagnosis
« Reply #4 on: Dec 24th, 2007, 10:09pm »
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Please do keep on rambling, every story I read here helps me hugely.
Some of the things I can relate to, others gives new information.
All of it tells me I am not alone .
I do feel guilty though when I listen to the ones who are cronic and can only admire how you all carry on so bravely.
Please keep rambling it really does help
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Re: My Long Drama & Diagnosis
« Reply #5 on: Dec 27th, 2007, 12:45am »
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Chappy, welcome to the board! You have a new family now, and we will do anything we can to help you.
Read all the info to the left, there is a ton of it. Keep on using the O2, it's a great abortive, with no side affects. You have it a 15 lpm, which is good. There are some studies going on using up to 25 lpm, that are showing good results. The main thing is to hit the O2 as soon as you know you are about to get hit. And get a tank to keep at work. You need  non-rebreather mask to use with it, for it to be effective.
It sounds like you are going through a completely understandable depression that comes with cluster headaches. A lot of us get that, it comes from being in pain all the time from the CH, and it really screws up your life, as you have noticed. Anxiety is normal, but try not to be too anxious. I'm sure once you get some weapons in your arsenal to fight this, that will lessen.
But, you can beat this!! Don't let it take you over. Many of us on this board are chronic, and you need to work with your neuro to see what meds work best for you, what combination will help you fight the beast the best. Then fight! You can't let CH run your life, you have a life to live, so learn how you can live your live with CH, and do it!
There is also injectable imitrex, which works well for a lot of people, your doc will have to script it for you. It works pretty fast. There is also melatonin, which is an over the counter med that will help you sleep at night, so you can rest, it stops the hits at night. Read, read, and read some more. Click on the OUCH link on the left here, they also have good info.
Feel free to ask any questions, we are here to help you!
Sorry you have to be here, but we are glad you found us!! This is THE most complete website on clusterheadaches in the world, and we have all the latest and up to date info, so if you read info somewhere else, check here for it too. Like shift working? Not true, people from every walk of life, and every job get these headaches.
Also, one last thing. It sounds like you may have a good headache doc. Clusterheadaches are pretty rare, and keep in mind that most docs don't know squat about them. All of us here know more than most doctors do, so feel free to print off any info you feel you need to show the doc.
Remember to ask any questions. Read up on the Med board, and the Cluster specific board, there is a lot of info in those threads. And above all, remember, we are here to help. Smiley
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