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Topic: Joining the ranks (Read 348 times) |
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sarsie
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Joining the ranks
« on: Jul 6th, 2005, 5:39pm » |
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Hello. I found your site a couple of months ago when a sudden pain near about knocked me to the floor-while holding my 22 month old. I was certain I was having a stroke or something and ended up in ER, after contacting my doctor who sent me there, and after contacting my parents to come get me since I was in no condition to drive and after contacting a babysitter! Not being one to up and run, esp. when being the sole caregiver to my two (soon to be three!) children, it took a lot of pain to go to ER.
I was really perturbed by their insistence upon calling this horrible pain "a headache." Three shots of demoral later, I finally got some relief, but no diagnosis.
This first bout lasted about 3 weeks.
An online friend pointed me here, where I realized all the things going on were exactly what was happening to me.
Finally, today, I saw a neurologist and got the diagnosis. Unfortunately, I do not anticipate a lot of support from my husband as he does not understand the type of pain I am in due to "a headache." I don't think anyone, other than y'all, can truly understand it!
I am 30 years old, and the mother of two children, ages 4 and almost 2, and a stepdaughter, age 13, and am currently 7 weeks pregnant with No. 3 (uh, can you say "oops?" .
My treatment options right now are limited, of course, but I'm hoping to make it through the pregnancy without another cluster.
Off to read all about your experiences as well!
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E-Double
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Re: Joining the ranks
« Reply #1 on: Jul 6th, 2005, 6:49pm » |
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Hello preggo 
We have a few ladies here who are in cycle while going through the emotional/hormonal joys of a little one growing inside ya.
I am not one of them though my wife is preggers....I just have a demon in the head not the belly
Anyway since medicinal options are probably out here is one that you may try.....forget that! Do not try DO!!
Pardon me sounding like Yoda......
you want an abortive with the least amount of danger/side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful IF OBGYN says ok
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.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Research with melatonin use and pregnancy....
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed &list_uids=9745980&dopt=Abstract.....
doesn't appear to be much research in humans ASK DOCTOR!!!
Like I said we are all different and the vast majority of us are not pregnant CHer's though their ar 2 or 3 definitively on the board
Some additional non-medicinal treatments could be:
*Wrapping a bandana tightly around my skull (be careful) IF OBGYN says ok
*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
Best wishes, good luck & stay as positive as you can!!!!
Also might want to make a post "calling all women! or pregos!"
Hugs and good luck!
Eric D
( now I have to say "D" because good old Cazman started with the Eric "T"  )
Edited to add: bring hubby here and have him check out the supporters board......he needs to learn as much as he can.
Read the link on this board that says letter to colleagues......print it out and have him read it !!! also give it to family members..Though written for employers it is a good LAY informative letter for friends and family to see what we go through
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| « Last Edit: Jul 6th, 2005, 6:52pm by E-Double » |
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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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lionsound
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Re: Joining the ranks
« Reply #2 on: Jul 6th, 2005, 8:57pm » |
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Quote:| Also might want to make a post "calling all women! or pregos!" |
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did I get paged? 
Hi sarsie!
My name is Rori, and I'm pregnant with my third as well! I'm almost 15 weeks along now. It's not easy to balance it all and have CH pain looming when you are thinking for two....we are amazing!
For the record, my OB and my headache doc said a big fat NO to melatonin but gave huge THUMBS UP TO OXYGEN!!!
And lots of times being pregnant can also mean being Pain Free as well. I haven't found that to be the case for me.....so I would recommend you get some O2 to have around just in case. Click on the link Eric provided above for info........The list he gave of non-medicinal treatments is excellent too. Ice is one of my favorites.
Your medicinal treatment options are kind of limited, but the support here is unlimited!
I understand how you feel..  please PM me if you need to chat.
Be well and Pain Free,
rori
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sarsie
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Re: Joining the ranks
« Reply #3 on: Jul 6th, 2005, 10:00pm » |
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Thanks Eric! I have already read the letter to my dh (dear husband for those that aren't on other message boards a lot! LOL). He is maybe starting to see it.
It helps because he does know I'm not going to ER for nothing. He actually left work that night because he figured if I went to ER, it had to be life threatening (he works 2nd shift).
My neuro did tell me if I began a cycle, to go to ER, demand the O2 and have them call him if they were not receptive to the treatment. He also said if I enter a cycle to call him and we'd talk actual treatment immediately and consider sending me an O2 tank home. Since I'm not currently in a cycle-and may not GET into a cycle while pg, I think he wants to just wait and hope I get through the pregnancy when we can try Imitrex or something else he mentioned.
He seemed REALLY knowledgeable about CH and I was sooo happy about that! He talked about the preventative and the abortive measures (I'm a pro-lifer. BEing pregnant, he said, "abortive" and it took me a moment for the old English major to kick in and remind me that all things "abortive" are not aborTION!! ROFL).
I am lucky (at least with this last cycle) in that I apparently have the fairly uncommon "daytime" attacks. No nighttime-yet anyway. Doc said that all my symptoms were classic, except for that. But, still felt it fit firmly into CH. My MRIs, CT, and EEG were all normal.
I have suffered two head traumas-both a result of serious car accidents resulting in loss of consciousness and memory.
In regard to your suggestions:
Quote:| *Wrapping a bandana tightly around my skull (be careful) IF OBGYN says ok |
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I spent three weeks feeling like I was crushing my skull together! It brought some relief, though (not much, but some!) A bandana is a great suggestion!
Quote:
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
it. |
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Neat idea. I'll have to make sure it doesn't raise body temp (heightened body temp can be danger to baby), but when not pg, or as long as it doesn't affect the overall body temp, definitely something I'll try. During my cycle this last time, I did note that a good hot bath helped minimally.
Quote:| *Going from Steam to Frigid shower. |
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Not a good idea for preggers, but will DEFINITELY try that one, too. In fact-I think I'm willing to try anything!
Quote:
Really?
Quote:| *Icepacks or frozen veggies on the back of the neck or eye |
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Another neat idea-you know, toward the end of my last cycle, I started experiencing pain back in my upper neck-like maybe at the brain stem? Right where my neck and head meet up. Have you ever had that happen?
Again-thanks!
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sarsie
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Re: Joining the ranks
« Reply #4 on: Jul 6th, 2005, 10:02pm » |
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Thanks for the backup on the ideas, Rori!
And thanks for the support!
I have had headaches most of my life-due to the head and neck injuries. But, NONE came anywhere CLOSE to this.
But, my point is that while pg-those headaches have always disappeared. I'm hoping that means I'm prone to NO headaches during pregnancy!! Including CH ones!
I'm sorry anyone needs to come to this site! CH is absolutely horrendous.
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E-Double
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Re: Joining the ranks
« Reply #5 on: Jul 6th, 2005, 10:04pm » |
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GET THE TANK REGARDLESS !!!!!!
Keep it handy!
Ice can be your friend as can a really strong blast form A/C
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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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Topical
New Board Old Timer
Posts: 256
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Re: Joining the ranks
« Reply #6 on: Jul 7th, 2005, 4:12am » |
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"(I'm a pro-lifer. BEing pregnant, he said, "abortive" and it took me a moment for the old English major to kick in and remind me that all things "abortive" are not aborTION!! ROFL). " - Sarsy
That is hillarious. O2 is great, others here have suggested going to a firehouse with paramedics as the emergency room is too crowded/far away. "A what headache? Fill this out and we will call you." It sounds like you have a great doc who may be able to push you through the paperwork.
Stay well and grats on the baby! I hope you are totally PF and the pregnancy sends the monster into it's lair permanently.
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burnt-toast
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Re: Joining the ranks
« Reply #7 on: Jul 7th, 2005, 7:24am » |
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Sorry ya' must join in the fun pain - but welcome.
On your hubby issue - my wife is very supportive and after seeing me suffer these last 10 years knows there's pain involved but really still doesn't comprend the severity.
One thing that helped my family better understand was to print some of the articles from the site and have them read em', you may want to try that but I believe that unless you experience clusters it is very difficult to fully comprehend how severe the pain is.
I remember that during my very first attack - I believed I was dying - gotta be the safest - gotta be dying - pain in existance.
Best wishes on your finding relief and dealinig with your current circumstances.
Tom
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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Kirk
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Re: Joining the ranks
« Reply #8 on: Jul 7th, 2005, 3:55pm » |
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Make sure that they give you a nonrebreather mask (single vent) and a regulator that goes to atleast to 15 litres (15/lpm) a minute.
Remember O2 is your friend. 
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sleeplesslee
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no pain no gain, wheres the gain?
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Re: Joining the ranks
« Reply #9 on: Jul 7th, 2005, 5:13pm » |
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Hello All
I am a newbie to the site as i have only found it today.
I have been a clusterhead for about 3-years now,but have only been diagnosed for about 6-month.
The english medical system seems to be awful at things they know little about.
For years they have been telling me i have migranes but at last they have agreed it is actually clusters.
Due to the lack of information available from my doctor and the lack of help elswhere in this country i have no idea how to manage/cope with this illness and have found that the only thing that gets close to working for me ia annadin extra/ultra anf i am sure that is only in my mind.
I have tried maxalt and the strongest pain killers you can get on prescription in this country but to no good.
I am not fishing for advice just giving you a idea of how i am trying to cope.
By the way i am 32yrs old,male,married with 2 children, my wife copes well i think,but finds it hard at times.
Now i have found you i can at least feel better knowing i am not alone and look forward to hearing from you all soon.
Thanks for reading
Lee
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LeLimey
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OUCH-US - Less "ME" and more "WE"
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Re: Joining the ranks
« Reply #10 on: Jul 7th, 2005, 5:28pm » |
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Hello Lee its good to meet you!
I'm just sorry its here.. but anyway lets see what we can do to help you.
Have you tried O2 or imigran (sumatriptan) o2 is marvellous, I can't sing its praises enough. It aborts 99 out of a 100 hits for me in about 10-15 minutes. I also have imigran injections for when the O2 doesn't work. These work in around about 5 minutes but you can only use a maximum of two per day. Don't let your doctor palm you off with the tablets or nasal sprays.. the tablets don't work at all for ch and the nasal sprays take too long. The injections are the only licensed treat ment for CH if your doctor wants to consult his BNF!
Have a look at OUCH UK
http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD
There is a lot of info there on meds available in the UK.. sometimes they have different names to here so its worth checking (ie imigran is imitrex in the US)
Have a look under the treatments option at Oxygen and specifically CD Oxygen.
http://www.clusterheadaches.org.uk/home/index.cfm?address=../treatments/ txt_drug_oxygen_regs_cd.cfm&added=11/08/03&code=CD
These are cylinders with inbuilt regulators which go up to 15LPM which is what you will need. You will also need a non rebreather mask which you can get your chemist to order for you for about £4. For some bizarre reason you can't get them on the NHS but they are cheaper than the prescription charge anyway.
There is also a helpline ( 0161 2721702 ) if you want to speak to someone. Its manned by sufferers and if you leave a message someone will call you back.
Let us know how you are getting on and if you want to know anything just ask!
Take care
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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sarsie
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Re: Joining the ranks
« Reply #11 on: Jul 7th, 2005, 11:00pm » |
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Thanks for the warm welcome!
Lee, I hope you find something that works well for you, too!
Lee and Limey, may I extend my condolences and concern for our British friends today.  I hope you and yours are all safe.
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Topical
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Re: Joining the ranks
« Reply #12 on: Jul 8th, 2005, 1:19am » |
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Welcome aboard Lee. I am sorry you had to come here. This pain is @#%#.
I second the idea of O2 as an abort. Keep reading and see if you can find some other things you haven't tried. Maxalt didn't work well for me either. There are a lot of knowledgeable people here, so just start a thread and ask away. I am sure they will help you out however they can. Hang in there.
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RichardN
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Re: Joining the ranks
« Reply #13 on: Jul 12th, 2005, 2:37am » |
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Hey Sarsie and Lee
Another oxygen proponent here . . . it will require a prescription, and like Kirk said, you need the proper mask and regulator . If 02 works for you, you can abort a ha in minutes . . . . and considering how fast and hard the beast can hit, you don't really need a 10-15 min ride to an ER, likely to:
A. Find the headache has disipated by the time you get the paperwork filled out, or
B. You have reached the high KIP levels the 02 won't reach.
Get the script, have the 02 immediately at hand, and kill the bastard BEFORE you have to "dance" with him.
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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