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Topic: Hi Everyone!! Please help if you can!! (Read 985 times) |
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SherriP
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I just dont know!!
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Hi Everyone!! Please help if you can!!
« on: Dec 19th, 2007, 6:10pm » |
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Hi All,
Its been a very long time since I have been able to get on here..I havent had a computer for a while..but am so glad to be back..Unfortunatley since I was gone so long I forgot password and such, so I had to get a new name... but not much different then the last... Its SherriP now instead of SherriW. Well here goes.... for the past year and a half I have been cluster headache free.. My new neurologist has been so wonderful...He put me on a mix of Lithium and verampamil, and no headaches....The hard part of my situation is that I just got married in May of this year and now my husband and I just found out we are having our first child together...I am only about 8 weeks pregnant..Well needless to say as soon as I told my doctor he immediatley started tapering me off of my meds.. and NOW the headaches are back and I am so scared because they are bad and my blood pressure when I get a 5 to 10 goes to 150/104 I know this cant possibly be good for the baby but no one seems to know what else to do...I just cant take the meds because they are known to cause birth defects... Thankfully I only get about 3 of these BIG ones a week.. all the rest are small enough im able to bear them... I just dont know what to do or try so that I dont get myself to that point of such high blood pressure but even the doctors know when u HURT U HURT and they cant do anything about it because they dont last long enough...I have heard that sometimes woman when they get pregnant that by the end of the first trimester they seem to cease... I am just so scared they wont and what GOD FORBID could that do to my unborn child.. If anyone has any thoughts please let me know.. I just dont know what else to do at this point. I hope everyone is well and PF I have missed you all and your great advice... 
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SherriP
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vietvet2tours
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Re: Hi Everyone!! Please help if you can!!
« Reply #1 on: Dec 19th, 2007, 6:23pm » |
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Oxygen over and over.
Potter
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Kill em all let God sort em out
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BaseballCoach
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Re: Hi Everyone!! Please help if you can!!
« Reply #3 on: Dec 19th, 2007, 9:33pm » |
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Vet, do you really believe if taken the way it should be O2 will work for 100 percent of people? I tried it the first time and it didn't abort, but maybe I didn't use it right....I just notice on all your post, it's always just O2...LOL...Is that the only cure??
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E-Double
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Re: Hi Everyone!! Please help if you can!!
« Reply #4 on: Dec 19th, 2007, 9:41pm » |
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Congrats!!!
Change the title of your post to Prego and you will get some input from some of the mommies who delt while preggers.
O2 will be your key to aborting attacks
If pain is beyond belief, I have read (but talk to your own doc) approval with verapamil as well codiene for the worst case scenerios.
I personally do not have a uterus so I do not know what it is like but I would imagine the added fear of taking meds to control the pain when it could possibly pass the barrier into the thumbsucker.
Anyway, pain free wishes and OXYGEN!
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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
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Linda_Howell
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Re: Hi Everyone!! Please help if you can!!
« Reply #5 on: Dec 19th, 2007, 9:44pm » |
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Quote:| ...Is that the only cure?? |
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Coach...there is no cure.
I am not speaking for Potter...o.k. maybe I am, but I have no right to.
02 IS the very best we have to work from. Does it help 100% if people used it correctly? No. But all of those who give up because it didn't work and it was because they didn't use it correctly would be upping the ante a lot.......
Why NOT try something that is safe, cheap and has no side-effects? pretty stupid in my book if they dis-regarded that.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Jonny
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Re: Hi Everyone!! Please help if you can!!
« Reply #6 on: Dec 19th, 2007, 9:59pm » |
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on Dec 19th, 2007, 9:33pm, BaseballCoach wrote:| I tried it the first time and it didn't abort, but maybe I didn't use it right. |
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What are you an ass.hole?
You never mention if you tried it again and if it worked!
Please enlighten me as to WHEN you joined this website....Please?...could it be that you joined eight days ago and now your bagging on someone that has been here for years?
I would not be surprised if your profile was deleted in the next few days. 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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BaseballCoach
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Re: Hi Everyone!! Please help if you can!!
« Reply #7 on: Dec 19th, 2007, 10:34pm » |
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LOL, Ok I'm sorry I'm sorry....Really Jony, I'm sorry....Didn't mean to come across like that.....at ALL...Fact is I'm CLUELESS compared to all of you....i just joined, probably 8 days ago like you said....I had just noticed vet was really heavy on the O2, and I guess I was trying to uncover why this seemed to be his "only and TRULY GREAT" abort.....I still don't think I'm clearing up what I was trying to say, lol....and I still think I sounded like an not a very nice person, and I really wasn't trying to.
Let me try one more time....Ok, You see that I haven't been on here long...so I'm not sure what some people have tried and others havent....well alot of folks wonder what to try.....and......some tell them stay with the O2, stay with the O2, ....I'm just wondering if that's the best out there and will it eventually work for everyone?!? Because if it will, I will definately stay with it? Does that make it anymore clear? If you had seen my other post, I said, i'm going back to neuro Friday and asking for O2 again.....I DON'T think I used it properly the first time....
Sorry to ruffle feathers....hope I'm not deleted....No A. Hole here....used to be maybe, but grew out of that a long time ago....
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| « Last Edit: Dec 19th, 2007, 10:36pm by BaseballCoach » |
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Linda_Howell
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Re: Hi Everyone!! Please help if you can!!
« Reply #8 on: Dec 19th, 2007, 10:58pm » |
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you have ruffled no feathers here that I can see hon.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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George_J
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Re: Hi Everyone!! Please help if you can!!
« Reply #9 on: Dec 19th, 2007, 11:36pm » |
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Welcome, Sherri. 
Good to see another Idahoan on here--and congratulations on the expected one.
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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RichardN
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Re: Hi Everyone!! Please help if you can!!
« Reply #10 on: Dec 20th, 2007, 12:42am » |
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Hi Sherri
Welcome back and congratulations!
I'm another 02 pusher. Can't take Imitrex (artery blockage and high cholesterol), so 02 is my only abortive. Remember, must be used with a 15 lpm regulator and non-rebreather mask (the one with the bag) or Clustermasx (when they become available again). I can kill him in minutes if used early-on in the attack.
Would like to hear from some of the "pros" on this, but I can't imagine that 02 would be more dangerous to your unborn child than the havoc wreaked on our bodies (stress, BP, enzymes?) during a series of cluster attacks.
Don't discount water therapy (see "water X 3" . . . link on left). I'm personally convinced this has helped me greatly reduce the frequency/intensity of attacks.
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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BarbaraD
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Re: Hi Everyone!! Please help if you can!!
« Reply #11 on: Dec 20th, 2007, 7:29am » |
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Welcome back Sherri and congrats.
DOn't know what to tell you about meds for the CH. Talk to your doc. There's got to be something to help you. O2 would be my first choice also.
Keep us informed and you know we're praying for you and sending good vibes your way.
Hugs BD
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DennisM1045
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Re: Hi Everyone!! Please help if you can!!
« Reply #12 on: Dec 20th, 2007, 8:00am » |
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Congratulations Sherri!
I'm sorry your formula had to be changed and the beast has returned. I'm with the others on O2. It just needs to be used correctly to be effective. Also, in the without an energy drink or other backup, the headache can come back shortly. You just need to hit it again and knock him back down again. Wash-rinse-repeat ... I think that is what Potter was getting at.
If you haven't used O2 before the best description of how to use it is here:
http://www.ouch-us.org/medications/oxygen/o2links.htm
Spend some quality time with the supplemental guide there. It explains exactly how to make the best use of this tool. I didn't have anywhere near the success with O2 before really reading this guide. It is well worth the effort.
As you fight hun just keep reminding yourself why you are engaging in hand-to-hand combat again. Your baby's health is what it's all about and you won't let the beast or anything else put that in danger.
Good luck with the pregnancy and your head and please keep us posted.
Wishing you many PFDAN...
-Dennis-
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lionsound
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Re: Hi Everyone!! Please help if you can!!
« Reply #13 on: Dec 20th, 2007, 9:11am » |
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Sherri,
I understand your worry. when i was pregnant in 2005 I had CH and Migraine throughout. I am not a doc..just sharing my experience...
Oxygen and SUPPORT were my two best meds
I also consulted back and forth from my HA specialist to my OB/GYN. They both wanted me to take the verapamil and i didn't because i didn't want to cause harm to my baby.
However, my OB/GYN said that women who have blood pressure problems take verapamil while pregnant because in that case the benefit far outweighs the risk.I can't tell from your post if Blood pressure is a concern only with your CH or all the time for you. If you are as worried as you sound, I would got to the doc and have them monitor your BP.
NOW is the time to meet with your OB/gyn and your neuro to make a game plan for if things do not improve. Have them call each other to consult. Sometimes the OB won't see you until you are further along, but tell them you need to be seen ASAP.
Also if you can hold off from meds until after the first trimester(unless your blood pressure warrants it), that tends to be better. I took some tylenol with codeine in the last two trimesters when I was having a hard time and needed sleep and some pain relief. I was terrified about harming my baby. It took two docs, my hubby and Eric(E-double) to convince me to do it. I was a mess and the benefit of me and and baby feeling better far outweighed the risk to baby. I think i took it twice maybe three times total.
When i tapered off verap because I thought I was pregnant my CH and migraines got a lot worse. Please be careful about how fast you tapered off of your meds that can cause problems for you body in itself. I was warned not to taper off of verapapmil too fast. (I never took lithium)
please feel free to send me a PM or ask more questions.
I wish you happy and healthy and PF!!
-Rori
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| « Last Edit: Dec 20th, 2007, 9:13am by lionsound » |
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SherriP
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Re: Hi Everyone!! Please help if you can!!
« Reply #14 on: Dec 20th, 2007, 3:46pm » |
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Thank you all so much for all your advice and good wishes... one thing I have always done is listen and learn from all of you... I will definatley get the oxygen I have used it before... and I will be getting with both of my doctors on meds... I as well never liked taking meds with any of my pregnancies and I really didnt want to start now... My doctor has already given me Hydros because he says that is the only thing they have really given to pregnant women and it hasnt caused a problem.. or at least not a severe problem.. well needless to say I dont like it.. but if I absolutley have to have it It will be there... I just have found that meds like that have actually brought my headaches on.. similar to a glass of wine when I would have one... But thank you all again All your words are taken Strongly....
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SherriP
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Annette
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Re: Hi Everyone!! Please help if you can!!
« Reply #15 on: Dec 20th, 2007, 5:54pm » |
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Hi SherriP
Please try the oxygen again. When my husband first tried it, it didnt work the 1st, 2nd or even 10th times. He was just not doing it right. Then when we got all the right instruction and he did it properly -> BINGO ! the headache went within minutes and no side effects like the drained feeling after a trex injection.
We thought OK oxygen, plug the mask in and breath away, easy peasy right ? WRONG ! First of all, he didnt get on it early enough, he waited until the pain got so high that he wasnt breathing properly. Its hard to take regular deep breaths when you are already panicky and bouncing. Then the flaps werent on properly, he got air contamination through the gaps in the flaps, not 100% oxygen -> wont work. So he had to learn to tape them down, later he got the clustermasx which was the best. Next problem ? too much mouth breathing and it dried his throat out. After several uses of pure oxygen through the mouth it was so dry it became uncomfortable. Solution ? water bubbler was added.
Even after the techniques were mastered and it was working well, there were still some hiccups. Puffing away .. strange, the bag wasnt inflating ... oh no, the dog was sitting on the tube chewing it , it had holes in it now .... OK, dogs not allowed near oxygen tank and tubes anymore. Then the next hiccup? Oops, fell asleep with the oxygen still running, lucky he already learnt to cut the strings off so the mask fell away from his face and he didnt suffocate but the whole tank drained ...YIKES, that could get expensive! Solution -> better to walk or pace while on the oxygen .... oh, needs longer tubing ....
Finally, after being equipped with 3 large tanks, 1 in the study, 1 in the lounge and 1 in the bedroom, 3 clustermasx masks, bubblers and ice, long tubing with no dog in sight ... he was happy to pace and walk around puffing until the headaches went. This helped aborted up to 90% of the hits.
If he had given up on oxygen after the first 10 or so failed attempts , we would be paying through our nose for trex and his heart probably would have given up by now.
Please give it another go and please read all the infos to get it right.
Good luck and painfree wishes.
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Pinkfloyd
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Re: Hi Everyone!! Please help if you can!!
« Reply #16 on: Dec 20th, 2007, 11:58pm » |
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on Dec 20th, 2007, 12:42am, RichardN wrote: Don't discount water therapy (see "water X 3" . . . link on left). I'm personally convinced this has helped me greatly reduce the frequency/intensity of attacks.
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Hi Sherri, and congrats.
As to the water x 3....it's probably a good idea to try but before you drink lots and lots and lots of water, you should consult your doc to see if that might cause any problems. Maybe someone else here knows more on the subject. I just know that drinking massive amounts of water can change body chemistry beyond just making you pee alot.
Bobw
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Crappy
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Re: Hi Everyone!! Please help if you can!!
« Reply #17 on: Dec 21st, 2007, 1:15am » |
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Maybe it doesn't matter since I'm a newb, too, but when I read coach's post I didn't read any intended negativity into it all. I took his meanong to be exactly what he said above, that he was looking for advice from the veterans, because I've been reading most of his other posts and that's consistent with his attitude. Actually, I had to read Johnny's post a few times to figure out what he thought Coach had said that Johhny mistook as disrespectful. This one of the problems with text - attitude and emotion, and especially tone of speech aren't conveyed, so its easy to totally misread someones meaning. That's why emoticons were originally invented, but I can't stand the little bastards.
Coach - it sounds like you were only given one chance to try oxygen for a single attack, or did you get a tank rental to try at home? I've heard slot of people say it doesn't work every time, only works if used early enough in the attack, for some it works at 8 Lpm but others require 15Lpm, and some require 10 minutes while others take up to 25. It sounds to me like you're going to need a big tank and give it quite a few tries to make sure you're giving it the best chance.
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RichardN
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Re: Hi Everyone!! Please help if you can!!
« Reply #18 on: Dec 21st, 2007, 8:08am » |
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Bobw (Pinkfloyd) is right about checking with your doc before starting the water therapy . . . especially in your condition . . . an oversight on my part.
I also probably need to mention that water therapy for me was not exactly voluntary. When I came here (2/02), my wife tried to get me to try same, but being a (stuborn) man, I didn't really consider something that simple could have any effect on the agony I was having. My salvation was 02 and Verapamil, which finally gave me some control over the beast.
In 2/04 my bladder & prostate were removed (bladder cancer), and now have a neo-bladder (but no stoma . . YEA!), which requires me to consume 4-5 qts daily to keep kidneys and neo-bladder flushed and prevent UTIs (had many first 1 1/2 yr . . . one in the last 10 months) . . . .AND the frequency/intensity of my attacks were greatly reduced. On those occasions when (for whatever reason) I cut my water intake by half or more . . . WHAM . . . major hits or series of hits . . . . which is why I'm a believer. I never go anywhere without my 02 . . . but I use far less than I used to.
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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