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Topic: Hi I'm Kai and new to this board (8 years of CH) (Read 292 times) |
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Kai
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Hi I'm Kai and new to this board (8 years of CH)
« on: Apr 5th, 2006, 11:52pm » |
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First of all, this message board is so great - both in its design and the people posting here. I'm so happy that I can become part of this community (minus the fact that I have to suffer from the pain).
I'm a 25-year old male and I got my first CH episode when I was 17. I just got another cycle started about two weeks ago and my recent attacks have been getting worse. Since I'm single and I don't have a good doctor (more about this separately - sorry this is going to be a long post...), I've been dealing with this devastating pain alone and this really sucks  .
I've read this board for quite a while now, and of course I found that the characteristics of my headaches are remarkably close to most of you guys'. They always occur on my right side and the places that hurt most are around my right temple and right eye (near the sinus). They mostly last for about 30-60 minutes and I can't help gasping with pain during that time. I get this torture once every day and my right nostril is almost always congested. In the past, my cycle started during seasonal changes (either December or February) especially when the weather was cold and rainy (same this cycle). It usually lasted for about a month and then disappeared - I hope this time it's the same too!
However, I'm also experiencing some symptoms that don't seem very common among you guys. For example,
(1) When my pain is bad, I usually experience nausea and sometimes I throw up (last night I vomitted my whole dinner into the toilet when my housemate was watching). This seems to be more common in migraine than in CH, right?
(2) During the day when I'm not in pain, there'll be an hour in which my right ear becomes red-hot, as if it's a sign telling me that my cycle is not over yet.
(3) Moreover, in the past (and up till now), I was never woken up in the middle of the night by the beast. Almost all the attacks I can recall happen outside of the sleep hours. Some hits occurred right after I woke up, though.
(4) My attack does not come exactly every 24 hours, although I get it exactly once a day.
So am I really a pure CH sufferer? I still think I am, but at the same time I'm also wondering if I have something more complicated... 
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Kai
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Re: Hi I'm Kai and new to this board (8 years of C
« Reply #1 on: Apr 6th, 2006, 12:12am » |
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[continued from above]
My cycle this year is especially irritating because I ran into a doctor who doesn't know how to handle patients with CH. I actually didn't want to see a doctor because I could never find one that knew about my conditions, but my parents urged me to try again. So I got an appointment from a random doctor yesterday at the Stanford Family Practice Clinic. I told her every single detail I could recall about my headache history in these 8 years. She then checked my nose, my ears and my reflex. Then she concluded that I might have either migraine or CH and explained why she came to that conclusion. Then after writing me a referral to "Menlo Neurology", she was ready to leave without prescribing me any medicine! I immediately asked her for some abortive treatment and she asked me back "okay, what do you want?" Then I said since I got Imitrex in my previous visit I would want to get the same thing. Then she started writing me a presciption for the Imitrex pills and I had to correct her by saying that last time I got the nasal spray. She ended up having to copy from my previous prescription for the dosage. All in all, she doesn't seem to know anything about CH/migraine treatments!
I also told her that many CH sufferers find O2 very useful and asked if it's possible for her to prescribe that. Not difficult to guess, her reply was no and the reason was it's going too far for family care physicians to give O2 prescriptions. I didn't ask further after that.
This is not the worst part of my experience, however. This morning, I called the number that I got for "Menlo Neurology" from the doctor's receptionist. Surprisingly, the person answering the phone said that they don't have a neurologist! Then I called the Stanford Clinic and asked if they had given me the wrong number. They ended up connecting me to the assistant of the doctor I saw, who told me that the Menlo Medical Clinic doesn't have neurologists and the doctor was probably mistaken. So I thought this assistant might actually know more that the doctor and be more helpful. She said she could refer me to the Neurology department at Stanford and have the doctor update the referral form, and she asked me to give them a call to see if they would take my insurance. So I did what I was told, and got another surprise - Stanford Neurology doesn't have a headache doctor at all! So what's the point of referring a CH patient in cycle to (1) a Neurology department that doesn't even exist; and (2) a Neurology department that doesn't see headache patients?
Irritated, I called that assistant again and told her my findings. She then said, "okay, then I would expect that you as a patient does a bit of work and finds out the doctor that you want us to refer you to." At the end, I found the Northern California Headache Clinic on the web with Dr. Kenneth Peters (recommended on OUCH). I called that assistant once again and gave her the information of this clinic. She said she would call back this afternoon once she got the referral form and stuff - she never did.
I also called that headache clinic I found and tried to make an appointment. The nurse said the earliest time available is May 4. By that time, most likely my cluster episode would be over (well, at least this is what I've been looking forward to given my previous experience). I'm pretty frustrated today - all I want is just see a doctor who knows CH and can prescribe me O2 (or more appropriate treatments).
Sorry for my very long rant, but I'm really depressed and need to find a way to let out my energy. If I've been impolite by writing so much bad thing about my doctor in my first post, I'm terribly sorry about that. If you've read my post up to this point, I want to thank you very much for your patience. This beast has brought me so much pain and unhappiness for the past 8 years, and the only positive thing I've seen so far about it is that it prompted the development of this wonderful web-site and support group.
I've been expecting my attack tonight which should come in any minute now. It's a blessing from the Lord that I can be PF during the time I compose this message.
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E-Double
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Re: Hi I'm Kai and new to this board (8 years of C
« Reply #2 on: Apr 6th, 2006, 6:33am » |
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Some of us have multiple headache type.
It is possible to have CH and a few others.....fun stuff!
The nausea is inconsistent with CH however, when peaking anxiety can run high which will increase adrenalyn which can make you nauseous and vomit.
When you get a grip on the anxiety it may stop.
The vomiting.
The pain is another story.
I'm sorry you are in pain but glad you found us and hope that you do get proper treatment.
Post something with California in it's title and you may get more specific help in locating doctors that have a clue.
Good luck.
Oh yeah, not everyone's come like clockwork every 24 hrs.
Some have upwards of 10 attacks per day.
Some have 1
Some choose meds
Some go med free.
Be well,
Eric (2yr chronic, med free now  )
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Bob_Johnson
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Re: Hi I'm Kai and new to this board (8 years of C
« Reply #3 on: Apr 6th, 2006, 7:22am » |
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First, start learning!
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Finding an experienced doc is essential--obviously (based on your experience!) Large hospitals/medical centers usually have an office to refer people to needed services. Look in the Yellow pages. Often, headache clinics will be identified as such. Referral sources: http://www.headaches.org/consumer/index.html (Look for the 800# and they will mail a list, by state.)
http://www.achenet.org/physicians/ (On line referral info.)
As to your experiences: variation in Cluster is common. Vomiting/nausea is unusual but has been reported in the medical literature. In any case, doesn't make much difference, at this point, until you find an experience headache doc to work with.
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| « Last Edit: Apr 6th, 2006, 7:34am by Bob_Johnson » |
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TxBasslady
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Re: Hi I'm Kai and new to this board (8 years of C
« Reply #4 on: Apr 6th, 2006, 10:50am » |
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While nausea and vomiting may be inconsistent with CH, I have experienced it also. Usually this only occurs when the CH has reached Kip 10 level.
I have also experienced the heat problem you speak of.
My hits are always at night....however, there are times when I get hit during the day. I got hit in January on the plane when I flew to Iowa. Never been hit when flying....until this year.
My hits have never been exactly 24 hours apart either..
You see, CH is so very unpredictable. When you think you've figured it all out....it changes. Anytime I changed my routine...either the meds I use...or my sleep pattern, the CH would run rampant.
You need to find a doc who'll give you 02. My doc has NEVER written a rx for 02....so I told him what I needed and then had my provider contact him via fax for approval.
I take no meds now....just use the 02 when I get hit. It has been a Godsend for me.
Good luck....I sure hope you find a doc who is willing to help you out. You may have to be convincing in what you need...and try and not settle for less.
Jean
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| « Last Edit: Apr 6th, 2006, 10:52am by TxBasslady » |
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Gator
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Re: Hi I'm Kai and new to this board (8 years of C
« Reply #5 on: Apr 6th, 2006, 1:13pm » |
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Hi Kai. Welcome to the asylum. Sorry to hear you are having such a rough time. Finding a CH knowledgeable doc can be difficult. Hang in there. In the mean time, you might try some of the non-prescription alternatives recommended by your fellow sufferers:
http://www.ouch-us.org/chgeneral/nonmed.htm
Oxygen is a great abortive for most of us. It is best to have a regulator that goes up to 15lpm and a non-rebreather mask is essential. Assuming you do not have any respiratory problems that would contraindicate it's use, if your doc won't write you a script, you can use welding O2. I lease a K tank from a local steel supply for $54 per year and get refills for $18. I got a regulator from Mr. Happy here on ch.com and a Clustermasx from www.clustermasx.com.
Read all you can in the links to the left and in the Medications and CH Specific Boards here. Print out things to take to your next doc to help you get the proper treatment. You are your own best advocate in your medical treatment. Knowledge is power. Get all you can before your next appointment.
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Kai
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Re: Hi I'm Kai and new to this board (8 years of C
« Reply #6 on: Apr 6th, 2006, 11:13pm » |
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Hey guys,
Thanks a lot for all the information. Frankly, I really want to give O2 a try. However, I don't know how I can get it from my doctor, and I'm not sure if I'm smart enough to set up everything correctly if I'm to go for the welding O2 option. Won't it be dangerous if I mess up something?
In case I manage to get a prescription from my doctor, where can I get the O2, the correct mask, the moisturizer and all the stuff? So far I only have experience filing my prescriptions at a pharmacy at RiteAid/Safeway/Albertson's. Please excuse me if I sound like an idiot... 
Since my hope of getting the prescription is very slim, I should probably do some research now to figure out where I can get welding O2. With my current condition though (Kip 6 last night 2am and this afternoon 4pm), I'm not sure whether I can put this altogether myself any time soon.
And the part that sucks most is I have to work these days! I read some posts earlier about the same concern, and I really feel the same too! I'm a software developer and our product is about to ship soon. I used to work very hard for all the bonus and stock and stuff, but now I'd already be very satisfied if I could keep my job.
When is the beast going to leave me this time?
Yes, vomitting is actually rare for me too and it only accompanies my worst attacks. But that definitely makes the worst attacks even worse. Whenever I get that, I start to dread eating, and I can't help thinking that perhaps I might have something worse than a CH.
Only a neurologist can tell though. The earliest appointment I can get is May 4. Still have a month to go... sigh.
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Gator
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Re: Hi I'm Kai and new to this board (8 years of C
« Reply #7 on: Apr 6th, 2006, 11:57pm » |
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It's not so much that only a neurologist can diagnose CH. It's more of a neuro, especially one specializing in headache, is apt to be more familiar with the proper treatment. Also, with my previous insurance, my regular doctor could only prescribe the amount of triptan doses within the insurance company limits, but with a letter of medical necessity from my neurologist, I could get much more.
Actually, you don't have to wait on the neuro to get the ball rolling. Your primary care physician can order an MRI which will be needed to rule out anything sinister in your head. Having this done in advance just helps the neuro make a diagnosis quicker. My neuro was quite happy when I walked in and handed him the film from my MRI rather than having to schedule one and wait for results and make another appointment, yadda, yadda, yadda.
Medical oxygen can only be gotten with a prescription. You can get it through a lot of the medical supply companies. Welding o2 can be gotten at welding supply stores, some farm supply stores and other places. Check your phone book. You will still need the proper regulator and mask. Contact Mr. Happy here via PM for a regulator and go to www.clustermasx.com for the best mask available. The clustermasx friggin rocks! It kills an attack much quicker than a regular nrb mask.
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RDubois
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Re: Hi I'm Kai and new to this board (8 years of C
« Reply #8 on: Apr 7th, 2006, 7:15am » |
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Hi,
I used to belong to the "Headache Foundation". They had a list of Doctors who specialized in headaches, and I believe they had a list of Neurologists who specialized in CLUSTERS!
Try Headache Foundation.org, or .com.
Good Luck
RED
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Kai
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Re: Hi I'm Kai and new to this board (8 years of C
« Reply #9 on: Apr 7th, 2006, 1:55pm » |
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Hey Gator, thanks a lot for your reply - it's really helpful. I've just got an appointment with another doctor today and I'm going to ask him to order an MRI for me and give me an oxygen script. I've printed out chtherapy.pdf and hopefully that can help convince him of my needs.
I've also called my insurance this morning and found that my plan covers MRI and oxygen. Turns out that the insurance customer service person is at least 4 times nicer and more helpful than the help desk at Stanford family practice (which seems quite counter-intuitive ). She was very patient with my inquiry and she even helped me find out where exactly I can get the O2 in case I can get a prescription. At last, something has gone smoothly for me. Hopefully I'll have the same luck with my doctor appointment this afternoon.
The weather is getting much better in the Bay Area (CA) these days. No more raining; blue sky and pleasant sunshine. I hope my episode this year will end soon too!
PF wishes for everyone else who's suffering these days.
RDubois, thanks a lot for your reply. I did some search on Google and found that the web-site for the Headache Foundation is www.headaches.org.
Kai
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