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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Sucks to be here!
        
(Message started by: athome on Jan 6^th, 2005, 10:04pm)

Title: Sucks to be here!
Post by athome on Jan 6^th, 2005, 10:04pm

I haven't been on this website for quite some time (not because I have been pain free but because of lack of time)
So last cycle was Feb 2003 - first time since I started them that I skipped a cylce (started when I was 16 almost 30) - so of course I thought wow could there be a change coming and of course with just the thought of that... this week I have started up again with these damn headaches that ruin my life and the one of everyone around me. I do not take anything for them the last dr I went to was not helpful and the meds did not seem to do much. As a mother of small children I tend not to focus on myself as much as I should and have been dealing with the pain as best as I can. I really hate taking medicine especially if it will have some weird effect afterward. Well I have begun my 8 week or so nightmare... Lets see if I get some rest for tonight should be my off night :)

Title: Re: Sucks to be here!
Post by LeLimey on Jan 6^th, 2005, 10:43pm

Hello at home,
I'm sorry you have to be here but I hope we can be some help!
There are some brilliant meds which you can research here on this site and go armed to the doctor with info! For myself I o2 fantastic, I can't recommend it enough. For when that doesn't kick in I have imigran injections (imitrex) which is also as far as I'm concerned a lifesaver. Others here swear by different meds.. the only important thing is to find the ones that work for you. There are alternative treatments that have very high success rates which you might also like to investigate, see posts on the psilocybin study at harvard.
I have small children too and looking after my bonce is a very big part of looking after them. I can't urge you enough to get help as if you improve your quality of life you automatically improve theirs. Just 'cos one doctor was a jerk doesn't mean the next will be so give it a try!
Let us know how you get on
Take care
Helen

Title: Re: Sucks to be here!
Post by thebbz on Jan 6^th, 2005, 10:56pm

Holy Smokes, you don't take anything? That is just too much to ask of yourself. Study all the info on the left. The O2 is a good suggestion. Hello and welcome. Hope you have something else. I have heard of being tough but suffering with CH and not taking anything, without hurting yourself or someone else is tough. Consider taking something for others?? All the best and hang in there.
BB

Title: Re: Sucks to be here!
Post by Gator on Jan 7^th, 2005, 11:48am

Welcome to the website or rather welcome back. Sucks to have to say that. Hopefully you can find something here that will help you through this cycle.

As you have no doubt discovered, the links to the left have tons of good info in them. There is even more on the OUCH website. Read everything you can and print stuff out that seems applicable. We definitely understand about clueless PITA docs. Hopefully you can find another doc that will be of more help. Being a knowledgeable and prepared patient might help.

Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH.

http://www.future-drugs.com/admin/articlefile/ERN020304.pdf

Here is a link to some non-prescription alternatives different people have used to help with the pain:

http://www.clusterheadaches.org/resources/non_script_treat.htm

If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:

http://www.drugdigest.org/DD/Home/AllAboutDrugs

Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.

Oxygen is an excellent abortive. Works for most people when used properly. Defintely try this. As well as it works, I have a hard time understanding why more doctors do not prescribe it. If your doc won't prescribe it for you, you might try welder's O2. It's the same pure oxygen used by medical suppliers. Many people here use it and would be more than happy to help you set it up. Here is a link that tells about using O2 and shows a setup using welder's O2.

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Here is a link to a letter that may help explain things to your friends, family and co-workers.

http://www.clusterheadaches.org/Cluster%20Headache%20Syndrome.doc

Again, welcome home.

Gator

Title: Re: Sucks to be here!
Post by RichardN on Jan 7^th, 2005, 2:11pm

Hey athome , sorry you're here.

I am another huge proponent of 02 as abortive. I also take Verapamil 240 mg per day as preventative (constipation is most common side effect - manageable), and I take 6mg of Melatonin each evening which I believe is helping.

For me, BEFORE 02:

Daytime hits arround 2 pm, take a couple of Goodies powders and "dance" til over, exhausted. (Most . . not all . . of my daily hits were of the 20-30 min variety Kip 6-8) , so I assumed the powders were doing me some good. Taking 8-10 powders per day was just eating up my stomach.
Nightime hits, up and dance while hot tub running (hot for some, cold for others),, pace, moan, whimper, curse, soak, etc.

AFTER 02

At first sign of shadows, hit the 02 . . . can normally kill the bastard before he gets to the Kip 3-4 level
Nightime . . . as soon as he wakes me, reach over and grab the mask (usually he gets a better grip at night, and am in more pain before I wake . . . . but the 02 is effective enough (for me) that I rarely get to the "dance" stage and am able to avoid considerable pain . . . .that's why those of us it works for swear by it.

Must be used correctly

Don't suffer needlessly,

Be safe,

PFDANs.

Richard

Title: Re: Sucks to be here!
Post by athome on Jan 7^th, 2005, 8:10pm

Thanks to all of you for responding back! The stinker came back last night and I wasn't even expecting him - so it was my usual get up 3:30am hit the cold shower, bend my head into my sholder as if I were going to stick my shoulder thru my jaw bone?, start to freeze, turn to warm water, turn back to cold and pray for a miracle to stop the pain. Then I had a school activity w/my daughter at 8:30am and I was afraid if I fell asleep that it would come back and put me in such a state that I would not be able to function so I just sat in bed and dosed off every now and then till I had to wake up at 6am. (I think I have noticied that if I do not lay back down after a hit and maybe dose off but in a sitting position I do not get hit or not as often?) Well like I said thanks to all for the info I will do some research especially on the 02. Lets see whats in store for me tonight??

Title: Re: Sucks to be here!
Post by RichardN on Jan 7^th, 2005, 8:57pm

Since you have no abortive or preventative at present:

Cold is your thing, hot is mine. For cold, try a bag of frozen vegetables (peas, cranberries, whatever), something that will mold to your face/neck. I like hot and use rice in a cotton sock heated in the microwave.
Try exercise . . . I will do "calf raises", bouncing up and down on my calves to get as much blood as possible away from my head.
The beast likes to come when you're relaxed. Try and avoid the heavy, "gotta take a nap" meals.
Try and identify triggers. Alchohol was definite trigger for me (quit 2/02). A beer, glass of wine or shot of brandy would bring on the beast in 15-20min.
Hope you have a PF night.

Richard

Hey everybody - - - - how bout giving this lady a list of your "pre-med" hints on dealing with the devil.

Title: Re: Sucks to be here!
Post by LeLimey on Jan 8^th, 2005, 11:32am

on 01/07/05 at 20:10:23, athome wrote:

.. I just sat in bed and dosed off every now and then till I had to wake up at 6am. (I think I have noticied that if I do not lay back down after a hit and maybe dose off but in a sitting position I do not get hit or not as often?)

Alot of other people have made the same observation, that for them being more upright helps. Like you cold works for me and going outside in the cold night air is good too. Another tip I have seen often on here is to turn the aircon on in your car to its coldest setting and to sit with your face as close to the vents as possible. I did this before I even found this site.. maybe by instinct who knows?! .. and it worked for me.
One thing I find to be a BIG trigger is heat and steam. Over Christmas when I was doing an awful lot of cooking I found the kitchen to be agonising, I was trying to cook with all the windows and the back door open until everyone else started complaining of hypothermia! :) I hope this helps a bit and I hope you find some relief soon.
Helen

Title: Re: Sucks to be here!
Post by CC2004 on Jan 8^th, 2005, 4:53pm

hi athome
I too have been med-free and understand your frustration with meds not working - but although I havent needed to try it (due to success with waterx3*), I will definitely be getting oxygen first thing to try next time round - it certainly seems to be the most successful abortive
I also agree with sleeping upright, its the sofa for me
Also (apart from alcohol #1 no-no for me), I have found going from activity to inactivity (just relaxing) is major trigger

*As for water water water - I highly recommend you try this and it may be particularly successful for those of us not on other meds.
I was a wreck when I found this site and that first evening I drank as much water as I could before going to bed - and I didnt get my 1 hour later wake up call! That very first night I got 5 hours sleep in a row - believe me that was magic at that stage as I had been hit relentlously for 6 weeks prior with only the occasional day & night off. The next morning I had a small hit on waking, then 4 nights PF...
In 24 days since I first began WWW, Ive been hit just 5 nights (one of those my own fault - xmas eve alcohol trigger - I was slammed for 5 hours)

Anyway I have been waiting before reporting on WWW for a bit longer until the shadowing and opposite side phantom pains ease up a bit more, but I dont think my cycle easing is coincidence as my last bout lasted 5 months. But I strongly suggest you try it NOW! It has been known to stop a cycle entirely within 5 day
- Ive been drinking a good size glass of water every hour from waking, then from 6pm a glass every half hour - its hard work drinking that much to begin with but you soon adjust (and write it down otherwise you'll forget)
This method seems to work better for those not on other meds, also I am a smoker and it may be more helpful for smokers, not sure :-/

Apparently there can be issues with too much water so do check with your doctor
Other thing I began at the same time was taking magnesium supplement (I take 2 x RDA) - again, not sure if this has helped

Hope this might help
take care & keep strong - and wishing PFDANs
CC

Title: Re: Sucks to be here!
Post by athome on Jan 9^th, 2005, 11:52pm

Thanks again for responding!! PF last night so I am one happy girl but I fear going to sleep tonight for I might not be as lucky. I have tried the water today but I can't say that I drank every hour it is kinda of difficult to drink so much.
Also thank you for the info that was sent to me to share with others about CH. I asked my hubby to read it today and he later came and said he was sorry that I had to go thru this - it was nice to hear as many times I know he does not understand the power of this beast and he just assumes that I can get up and go on with my day as usual. The info obtained from this site and others is great!! Thank you! Thank you! Thank you!