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Sharpie
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Suffering and in pain
« on: Jan 12th, 2005, 12:55am » |
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I can't take it any more. I know this is not much of an introduction to the board. I apologize and when I am not as desperate, I will formally introduce myself. 
I am suffering with headaches, as the main reason why I am here. I took the cluster headache test and most of them I said yes too.
I have been to my Family Physician and they had me do a CT scan. Nothing showed up for it.
What is happening is either when I wake up in the morning or by noonish I will start to feel pressure in my nose. Then comes the pulsating, throbbing headaches and then it proceeds to feel as though my eye is about to pop out of the socket. It is ALWAYS on the right side of my face. When the headache climax, it is very painful. I cry from the pain. My eye will throb and hurt, it feels like my viens are going to pop out of the temple area. I can barely lay down. I have to flip back and forth. It seems as thought nothing will make it go away. They ususally last about an hour and a half to two hours.
I usually got these headaches during the summer so assumed that they were sinus induced from allergies. Now for the past 2 years I have gotten them during the winter as well. I had to go to the doctor last Thursday, it got so bad. These headaches started the week of Christmas and I have had at least 2 or 3 a day since.
I cant take it anymore. I have been researching on the internet trying to figure out what the hell it is. The doctor said that she thinks its Migraines, but really couldnt tell me much.
What should I do? I cant live like this. Please.
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nani
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Re: Suffering and in pain
« Reply #1 on: Jan 12th, 2005, 1:02am » |
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I'm so sorry you are suffering...I think it would be a good thing for you to see a neurologist as soon as possible. Most primary care drs are not very well informed about headaches. Once you have a definitive diagnosis you can go on about the business of getting treatment. Look around the boards here and at the OUCH site (link to the left) and arm yourself with information. Many people with cluster headaches get relief from Oxygen. Many use the triptan drugs like Imitrex and Zomig to abort headaches. Many of us are also taking preventative meds. They take a while to get into your system, so you will want to discuss abortives with the dr, too. Hang in there, you are stronger than any headache ...get some answers and hopefully you'll get some help soon. Pain free wishes to you...nani
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Sharpie
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Re: Suffering and in pain
« Reply #2 on: Jan 12th, 2005, 1:10am » |
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I am just bawling as I read your post. I feel so let down by my body. I am only 25 years old. What the hell is the matter with me. I get so embarrassed when I am at work and I get "them" I feel like noone understands how much pain I am in. Like they cant see it, my right eye gets so blood-shot and hurts so bad I can barely look at someone.
I think I just needed one post, just one response of understanding before I went to go lay down.
I will look into a nuerologist. When I saw my doctor on Monday for a follow-up I was in great spirits because I "felt" better at the appointment. Then tonight, I got the most brutal headache, my husband was so concerned, he wanted to take me to the ER and I just wanted to be left alone. I was in so much pain.
Now I just feel desperate to get it fixed before I get another one. I just cant take it.
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nani
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Re: Suffering and in pain
« Reply #3 on: Jan 12th, 2005, 1:14am » |
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I know it's hard, honey...but you can take it. Someone wise here once said...never tell a dr that your not getting headaches. My last neuro appointment was the only pain free day I'd had in a year! Figures, huh. You must get in asap...look at the oxygen info button on the left. If you get hit a lot at night, melatonin might help. Look on the meds board for threads on it. Verapamil and Lithium are common prevents. Remember that the more info you have, the better armed you are to battle this. YOU CAN DO THIS! 
-nani
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Sharpie
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Re: Suffering and in pain
« Reply #4 on: Jan 12th, 2005, 1:23am » |
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Nani,
Thank you. I am very grateful for your responses. Thank you.
I will read the info you recommended.
You have helped, more then you know.
Thank you.
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maureeng96
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Re: Suffering and in pain
« Reply #5 on: Jan 12th, 2005, 2:22am » |
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I am a supporter, not a sufferer, but your feelings carry a familiar tune. When I met my boyfriend 4 years ago, he had been suffering from "migraines" for about six years, which his doctor was treating with pain meds.
Who finally diagnosed him with cluster headaches? ME! With the help of CH.com and OUCH.
Everyone has heard of migraines, but he was in so much pain that I wanted to learn more. I stumbled on this site while looking for migraine info. I did the cluster quiz because he couldn't sit still long enough, and I knew all his symptoms. He was a textbook case!
Since then, most of his treatments have been the result of suggestions we made to the doctors. His first two doctors refused to prescribe oxygen, so he moved onto the third. When we have had to go to the ER, I tell them that he needs a non-rebreather mask. Normally a timid person, I somehow get the courage to speak up when it comes to get the right treatment for the man I love when he's suffering so much.
He still has his bad cycles, and we're still working on getting the right mix, but he is now episodic, rather than chronic like he was two years ago. I am guilty of straying away from here when things are going well, but this is the first place I come back to when the beast rears its head.
Try to get your husband to read the info too, if he hasn't already. The supporter's corner has been a life-saver for me more than once.
Best of luck and hang in there!
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Maggi Jons
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Re: Suffering and in pain
« Reply #6 on: Jan 12th, 2005, 6:49am » |
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hey Sharpie
Hang in there..
This is the place to find out everything there is to know and how to handle your condition.
What helps me alot is to drink a lot of water, when i dont have meds... Gallons of it! Flush the beast out!
Definently go to a Neuro armed with info from this site.
best of luck
Maggi
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E-Double
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Re: Suffering and in pain
« Reply #7 on: Jan 12th, 2005, 7:39am » |
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Research Research Research!!!
Hang in there and be ready and armed with info....
Print this out...A realy good article with info for you and your doctors http://www.future-drugs.com/admin/articlefile/ERN020304.PDF
Not all treatments work for everyone and being that you have no meds @ this point nor have you been officially diagnosed, there are a few things that might be able to give you some relief non-medicinally.
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be a savior.
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
Some tricks that I used to use and sometimes still do are:
*Wrapping a bandana tightly around my skull (be careful)
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
it.
*Going from Steam to Frigid shower.
*Standing infront of A/C
*Icepacks or frozen veggies on the back of the neck or eye
*Tons of STRONG coffee.
Have you taken the "quiz" located to the left of the website?
All in all , pain sucks but this place will offer you tons of support if you need to be here. Kinda saved my life and apparently 1000's of others 
Pain free wishes to you and gather as much info as you can
Best,
Eric
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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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Langa
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Re: Suffering and in pain
« Reply #8 on: Jan 12th, 2005, 9:15am » |
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HI Sharpie and Welcome!
I'm sorry you're hurting, but if you do have clusters (and it sounds like it) you couldn't be in a better place.
You've already received great advice and I'll reiterate to definitely get to a Neuro with as much info printed from this site as possible.
Check your PM's by the way.
Best wishes and hugs to you...
Langa
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Sharpie
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Re: Suffering and in pain
« Reply #9 on: Jan 12th, 2005, 9:49am » |
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Thank you for all your responses. It truly helps. As I read each thread or post, more and more I feel I can relate.
Maureen: I will have my husband read this site. I just feel relieved that I found it.
Maggie: Thank you for your response. I plan on arming myself with all the info and emailing my doctor today.
E-Double: I do not get them when I am asleep at night. I get them as I wake up, or around noonish or in the evening. All around the same time. I can get up to 3 a day.
Langa: I pm'd you back. Thank you so much for your kindness.
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Bob P
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Re: Suffering and in pain
« Reply #10 on: Jan 12th, 2005, 9:52am » |
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If they are clsuters, laying down usually makes them worse. Most sufferers find that rocking, pacing, moving around helps.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Sharpie
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Re: Suffering and in pain
« Reply #11 on: Jan 12th, 2005, 9:53am » |
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I also want to add, that on my first initial doctors appt the last Thursday before, I was prescribed Midrin. I took it that day when I had a severe one, but it didnt seem to work. All it did was make me drowsy and my viens in my head felt like they were throbbing more. Maybe it didnt have anything to do with the Midrin. Who knows!
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nani
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Re: Suffering and in pain
« Reply #12 on: Jan 12th, 2005, 10:01am » |
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No you're right...Midrin won't help. E-doubles ice advice helps me some. That may be all you can do until you get the right meds. Sorry I forgot to tell you last night. Sometimes drinking lots of water helps me, too. Hang in there...pain free wishes, nani
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vig
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Re: Suffering and in pain
« Reply #13 on: Jan 12th, 2005, 10:03am » |
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welcome Sharpie!
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never, Never, NEVER quit. -Winston Churchill
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AIRS
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Re: Suffering and in pain
« Reply #14 on: Jan 12th, 2005, 11:53am » |
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Hi Sharpie,
read your posts today...hey I'm a fellow sufferer and have only just signed up today as I'm in the throws of my own cycle.
As everyone else has said...your bigger than the cluster, always remember that.
I'm 30 and have danced with the devil for over 10 yrs now...we actually challenge each other some days...sometimes I win and send him packing, and on other days the bugger brings me to tears...hey ho!
The biggest awakening I had was accepting the fact that they happen to me, and the best thing to do is to alleviate the pain.
Here are some of my tricks of the trade:
1. cold air blowing in your face.
2. pacing around a room while concentrating on your breathing...try and visualise your breath as blue and focus on it entering and leaving your bouth
3. and old greek taxi driver game me this one...stand on you head and forearms...leaning against a wall
4. water...by the gallon!
5. take a shower
these are little tips I've picked up over the years. Once you've beat it, and if possible fill up the bath, make your self a milkshake and chill out...you need to loosen the muscles in your neck and back.
Hope this helps
amir
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nani
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Re: Suffering and in pain
« Reply #15 on: Jan 12th, 2005, 12:00pm » |
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Quote:| stand on you head and forearm |
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CAUTION...this may not work and in fact, may make it worse. CH is a vascular headache caused (at least partially) by too much blood flowing through your veins. Inversion will send more blood there. I can't even bend at the waist...it's a trigger for me.
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LadyLuv
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Re: Suffering and in pain
« Reply #16 on: Jan 12th, 2005, 4:14pm » |
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First of all, you can take it and you will... We will be here for you. I'm sure that each and everyone one of us have felt like that at one time or another.
And second, you don't owe anyone an opology, trust me, we completely understand.
Until I found this group, I thought that I was the only person in the world having such headaches. When mine first started (over 25 years ago) I would crawl around the floor and beg God to take me. When I was rushed to the hospital, the Doctor would order 'nerve blocks' for me (injections at the base of the neck- under the skulll) and for the next several days the only way that knew I had a head would be to reach up and touch it. And I'm still here.
So yes dear, you can take it.. when mine started I had no one that I felt understood.. now you have several hundred people that not only understand, but are there for you.
I will add you to my daily Prayer list..
Peace & Blessings
LadyLuv
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Jake
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Re: Suffering and in pain
« Reply #17 on: Jan 12th, 2005, 7:09pm » |
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Sharpie:
You have all my sympathies and support. I'm in the 2nd week of m y latest episode and I had to be driven home from work today. The level of pain and inability to acuratley describe what it feel likes makes me feel like a helpless child. All I wanted to do was get home and hug my oxygen concentrator. So far, oxygen, Maxalt, my wonderful wife and some great people at work is all that's getting me through this.
I urge you to find a doctor you trust who understands CH and knows who to treat you. Best wishes, the bloody things will go away and you will get your life back.
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msharpe2k1
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Re: Suffering and in pain
« Reply #18 on: Jan 12th, 2005, 9:16pm » |
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Sharpie-- I too am new to this website-- found it by accident after just typing in clusterheadaches.com to see what I could find out about my cycles-----
I have had this garbage attack me 10 years now.Seems as each year goes by,my episodes last longer and are much more intense...
I have had a mild headache since 2 weeks before Christmas,and every single nite I am woken up to a fiery,stabbing pain behind my left eye.,sometime between 10pm and 1am.......this hell I go thru lasts 2-4 hours,then time to go to work.I feel like I have been thru WW2 each time..physically + emotionally drained just in time for work...Banging my head against the wall does take my mind off the real pain,but only for a second.
I dont know how I can still see out of my eye with all the pressure and pain put on it by these clusters.
Its funny reading everyone elese's pain process,because I'm in the same damn boat,and I really dont know if I can take it anymore either..Iwill see the neurologist next week.Hope I can last til then,,You need to do the same--good luck---------Mike
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BlueMeanie
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Re: Suffering and in pain
« Reply #19 on: Jan 12th, 2005, 10:23pm » |
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Sharpie,
So sorry to hear about your headaches and I hate to tell you but it sounds to me like Clusters. I started getting them when I was 21. Usually Spring & Fall. You can handle it. It's NOT easy, but you can. I see there has already been many replies and suggestions so I won't gab too much. I've had them 26 years so if you have specific questions feel free to send an instant message.
Someone replied they can't bend over. To me, it feels better when I let all the blood go to the top of my head. Usually I'll get in the tub and let water run down the back of my head with it tilted straight down. Drinking lots of coffee helps rid the residue headache after a CH attack. Read all you can to the left of this page to get familiar with all your options.
Take care,
BlueMeanie
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CC2004
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Re: Suffering and in pain
« Reply #20 on: Jan 13th, 2005, 1:08am » |
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on Jan 12th, 2005, 9:49am, Sharpie wrote:I do not get them when I am asleep at night. I get them as I wake up, or around noonish or in the evening. All around the same time. I can get up to 3 a day.
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hi Sharpie - hope you're doing a little better now, there's no better place to find than here 
Just a couple of things to add to the great info already posted here -
Its common to get hit in the morning after waking. Your hits around noonish and in the evening could be triggered by certain foods, or it could be going from activity to inactivity, ie commonly we sit down & relax to eat lunch and dinner, relaxing has been a serious trigger for me and I learnt to eat standing, pace around all evening, never ever relax - so difficult as the cycle goes on and you become more & more exhausted!
(also on triggers - I suppose you know alcohol can be a major trigger for most of us clusterheads)
I urge you to keep a diary and write down everything, not just hits - the time you wake, what you eat & drink, times of hits, duration & level of pain, when you go to bed... This may help you recognise any triggers/patterns - the more info we have the more we understand the easier to cope
Also I urge you to drink water water water - it stopped my cycle  - the moment you wake drink a good size glass, then every half hour until after your usual lunchtime hit time has passed, then 1 glass an hour, then a few hours before your usual time for evening hit go back to every half hour. Its hard to do but Ive been there and had success and ITS WORTH IT! Within a day or two of this it will be much easier to drink these large amounts - I promise! But you have to write it down, each glass (I use a daily chart for water/food/hits) otherwise you'll forget
(Let your doctor know you're doing this, also take some vitamens so you're not flushing them all out. I also take magnesium which may or may not have helped - 2 x RDA)
For the hits do try the cold - icepack/frozen peas in a tea towel - if it helps GREAT - BUT if its    (like me)
then you're a hottie (like me ) - try heat - a hot water bottle in a cloth will last longer than a hot cloth or water
long winded  - but hey, anything to try to help, just the tiniest relief can be such a huge blessing, we all know
take care & keep strong
and keep in touch
CC
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RichardN
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Re: Suffering and in pain
« Reply #21 on: Jan 13th, 2005, 2:37am » |
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Hi Sharpie and Welcome
As I sit here with 02 by my side (have beat him three times so far this evening). Make sure and copy the 02 info . . . . for those of us it works for . . . . tis a miracle.
When I came here I was having 6-8 per day, KIP 5-9 and over a year of mis-diagnosis, non-working meds and multiple tests (all normal of course). This place gave me a "name-for-the-pain" and a direction to go to alleviate same. Yes, he's still there, but I can cope now.
My only abortive is 02. Preventative is Verapamil 240mg (120 morn and eve), Melatonin 6mg at night, and water/water/water.
You're not alone . . .
Be safe,
PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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RichardN
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Re: Suffering and in pain
« Reply #22 on: Jan 13th, 2005, 2:44am » |
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Almost forgot
You too CC
If it's heat you like (is for me), try some rice in a cotton sock heated in the microwave. Stays hot quite a while and molds to your face/neck better than the water bottles. Of course, people tend to wonder why you keep a couple of sock "beanbags" by the microwave, but. . .. 
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I can live with the beast as long as I don't have to "dance" with the bastard.
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CC2004
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[smiley=sgrin.gif]Re: Suffering and in pain
« Reply #23 on: Jan 13th, 2005, 3:18am » |
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on Jan 13th, 2005, 2:44am, RichardN wrote:Almost forgot
You too CC
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hey Richard - such a bugger you're still battling so often, and yet here you are ALWAYS to help where you can
wish we could all just bring in the  and blast the f*....s away
CC
BTW still  
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| « Last Edit: Jan 13th, 2005, 3:23am by CC2004 » |
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Langa
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Re: Suffering and in pain
« Reply #24 on: Jan 13th, 2005, 3:49am » |
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on Jan 13th, 2005, 2:44am, RichardN wrote:Almost forgot
You too CC
If it's heat you like (is for me), try some rice in a cotton sock heated in the microwave. Stays hot quite a while and molds to your face/neck better than the water bottles. Of course, people tend to wonder why you keep a couple of sock "beanbags" by the microwave, but. . .. |
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Thanks for the tip Richard, heat works better for me too...i'll try this technique...
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