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jmc
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I can't believe I'm back
« on: Feb 12th, 2007, 11:57am » |
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Hello,
It has been 3 years since I've been to this site, I can't believe I'm back here again. I haven't had a CH for 3+ years and, naively I suppose, thought they had gone away for good. This past week I've been getting shadows on a daily basis but, obviously in denial, dismissed them as nothing serious. Well, last night it happened... the horrible beast brought the thunder and lighting and I'm not sure if because it's been so long but it was the worst i could remember. I can't believe it's happening again. Since my last CHs I am now engaged, live with my fiance, and I am dreading trying to explain this to her. I have told her I used to get bad headaches but never told her the extent of it. I told her about them this morning, but I'm worried she's just going to think 'it's a headache, get over it'.
Has anyone else experienced a 3+ year interlude between episodes. If so, how long have the CHs lasted for in your experience?
Anyhow, I am just glad that I have this place to go to, it really helps me cope with this. Thanks to you all for being here for me... again.
Any Dr. recommendations in the Austin, tx area? I don't have a CH friendly doc here.
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George_J
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Re: I can't believe I'm back
« Reply #1 on: Feb 12th, 2007, 12:14pm » |
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Hi jmc,
Wish you weren't back because of the headaches--but welcome.
I've had a three-year remission between each of my last three cycles. They used to be more frequent. Longest remission I've heard of on here (before they returned) was fifteen years.
Lots has happened in the past three years--take a look around, and see about getting back up to speed with treatments and such.
Tell us a little about the medications you've taken in the past, and may be taking currently if you will. If you have not explored the use of oxygen as an abortive, I'd encourage you to click on the "oxygen info" link on the left side of your screen. I'm sure others will be along to ask more specific questions and give you more specific information.
Best wishes,
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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jmc
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Re: I can't believe I'm back
« Reply #2 on: Feb 12th, 2007, 12:29pm » |
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Thanks George, I knew people had experienced significant time between episodes, but 15 years? Wow.
Anyhow, previously I used Imitrex, caffiene, and I'd run like crazy when I'd get a CH and nothing else worked. I feel like I'm out of the loop and need to re-evaluate what's out there for treatment. Imitrex and O2 still seem to be the most prominent treatments out there. I've never tried O2 but would like to. My next step is to make a doctors appt. to get a script for Imitrex, inquire about O2, and see what other suggestions might be out there. I had to go it alone last night for the most part and I can't do that again. 
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BB
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Re: I can't believe I'm back
« Reply #3 on: Feb 12th, 2007, 8:04pm » |
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Hello JMC
Welcome to the family, sorry that you are here with us because of pain but we are glad we can offer you a family with real understanding.
There are heaps of very good information on the Board, just spend some time reading up on all of the threads. Brew some nice strong coffee and make yourself comfortable in the chair and read on.
Regarding medication to control CH, a few things are a must to try, as they work so well for many.
1- Oxygen : cheap and fairly safe, and can abort an attack in mins, make sure you get a non rebreather mask though.
2- Triptans: such as Imitrex, Zomig, Maxalt etc, also can abort the whole thing in mins. The best seems to be Imitrex injections.
3- Prednisone taper: for bad or stubborn cycles, can take up to 75 mg per day, tapering off over 5 to 7 days to break the patterns. Your doctor will decide the dosage for you.
4- Verapamil : doses may vary from 480 mg per day up to 1000 mg, needs to be monitored but can work very well in blocking most of the attacks.
5- For night attacks, try Melatonin from 3mg to 15 mg per night.
6- For day shadows and little ones, try Red Bull , oxygen, strong coffee etc.
7- During an attack, feel around the neck to see if you have a cluster lump, a hot tender swollen ganglion under the skin which is tender to touch, can be on back or side of neck, if you have one, apply ice there, it will help a lot with the pain. It may be inside your mouth, back of tongue on the roof of the mouth too, if its there sucking on ice helps.
8- Come here and share with us your life in cycle, whinge, moan, celebrate .... whatever, we will be happy to listen and give you any emotional/mental support that you may need.
9- If you like to try new things, look at Kudzu, Taurine, Shrooms etc also.
10- Other goodies to be discovered at a later date
Take care and wishing you many PFDAN ahead.
Annette
PS: My husband has CH cycles with 2-3 years remissions in between. Its not uncommon.
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Guiseppi
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Re: I can't believe I'm back
« Reply #4 on: Feb 12th, 2007, 9:00pm » |
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You don't describe a preventative when you're on cycle. That's a medication you take when you know they're back...to try and prevent full blown headaches while you're in the "on" cycle.
I use 1200 mg of lithium a day, with a magnesium and calcium/vit D supplement. Others use topomax, verapamil, there are many for you to read up on. When my cycle turns back on I do about a 2 week prednisone taper while I ramp up on the lithium. Between that, the oxygen and occasional imitrex jab, I haven't had an honest to goodness "10" in forever. Here's hoping you have the shortest cycle followed by a record breaking remission. Wishing you peace.
Guiseppi
PS....have your fiancee check out the supporters corner. It's been a big help for my wife.
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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duckie
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Re: I can't believe I'm back
« Reply #5 on: Feb 13th, 2007, 3:23am » |
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Hi jmc,
It had been four years since my last cycle and I'd changed jobs and had not really explained CH to my employer. So I understand where you are coming from. I didn't want to talk about it too much with them but found this letter via the ouch website and it said what i needed to but couldn't. And at least stopped them from saying "it's just a headache" etc... I think it also helped my boyfriend understand better even though he's seen me in a cycle.
http://www.ouch-us.org/chgeneral/colleagueletter.htm
Hope this helps, ouch is a really good website too for information as well. Remember your fiance is welcome here too. 
PF vibes, Lii
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daniel96
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I can't avoid but to deal with it smartly.
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Re: I can't believe I'm back
« Reply #6 on: Feb 13th, 2007, 7:45am » |
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Sorry to hear that your headaches are back, but do check out the forum and the information that are posted , I find it very helpful and the guys/ladies here all are very helpful is solving or clearing any doubts we have.
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http://www.security6.com/clusterheadaches/ - my oxygen therapy setup
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Bob_Johnson
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Re: I can't believe I'm back
« Reply #7 on: Feb 13th, 2007, 8:45am » |
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Please! Don't deny your partner this information. You cannot hide CH from her; you deny yourself her support; withholding only undermines trust.
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1. Search the OUCH site (button on left) for a list of recommended M.D.s.
2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.
3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.
4. http://www.achenet.org/physicians/ On-line screen to find a physician.
5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder" which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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Bob Johnson
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jmc
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Re: I can't believe I'm back
« Reply #8 on: Feb 13th, 2007, 10:35am » |
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Wow! I'm humbled by all the responses, thank guys so much for the tips and words of encouragement. I spent a lot of time yesterday in research mode as well as trying to introduce my better half to what this is... she's very understanding and compassionate so far, albeit a little skeptical (to be understood I suppose).
I had a relatively light night last night, but the next step for me is to see a neurologist/doctor to get some real meds. Will a general practitioner prescibe injectable imitrex, etc. or would they just send me to a neurologist in your experience?
Again, thanks guys!
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Mattrf
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Re: I can't believe I'm back
« Reply #9 on: Feb 13th, 2007, 4:26pm » |
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Here is the link to the Ouch site that has listed recommended doctors by sufferers.
http://www.ouch-us.org/chgeneral/doctors.htm
Hope it helps and there is one nier you.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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jmc
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Re: I can't believe I'm back
« Reply #10 on: Feb 13th, 2007, 7:34pm » |
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Very good, thanks Matt. It seems I have a neurologist in my city.
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thebbz
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Re: I can't believe I'm back
« Reply #11 on: Feb 14th, 2007, 2:49pm » |
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You have the aborts down..get the 02 if you can. You need a prevent. Your off to a good demon stompin start.
all the best
jb
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It wasn't me I didn't do it
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jmc
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Re: I can't believe I'm back
« Reply #12 on: Feb 15th, 2007, 10:43am » |
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I will do that. Thanks again everyone for steering me in the right directions.
PFDANs good people.
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