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Lost_in_cluster
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Lord have mercy sorry long time
« on: Nov 12th, 2006, 2:04pm » |
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Hi all sorry long time not here and then appear in despiration but am lost truely....I have never had these this bad and am failing miserably at getting them under control... I have been hospitalized for a week that I can hardly recall and now and fighting not to be put back in... My head aches are horrible Mornings and nights and the indigestion from the pain meds is far cry from good....the Imitrex isn't covering these....I have never been here and can't get out of the slump....HELP>>>>>>
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LeLimey
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Re: Lord have mercy sorry long time
« Reply #1 on: Nov 12th, 2006, 2:21pm » |
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Kim? When you come back online hon wait and talk to us, we can and will help you get through this.
What meds do you have? Do you have O2? What did they give you when you were hospitalised? We will help you honey, just let us okay? If you need to talk just say ((HUG)) I promise you we'll get you through this.
lots of love and vibes heading your way
helen xxx
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Linda_Howell
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Re: Lord have mercy sorry long time
« Reply #2 on: Nov 12th, 2006, 2:43pm » |
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Hi Kim,
I noticed that you are in Briger, MT, population 752 and my next thought was we have a wonderful guy from here who lives in Billings which to my calculations is only a hop, skip and a jump from you.
Even though we can and will do anything we can to help you right here, there is nothing like speaking to someone face to face and maybe getting a good rec. of a Dr. from them.
Viet Vet2 tours? want to help a sistah out? 
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kimmiedawn81
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Re: Lord have mercy sorry long time
« Reply #3 on: Nov 12th, 2006, 3:01pm » |
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Kim, I hope you feel better soon! All of my vibes headed your way! 
And I hope that you have a painfree birthday tomorrow!!
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| « Last Edit: Nov 12th, 2006, 3:03pm by kimmiedawn81 » |
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nani
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Re: Lord have mercy sorry long time
« Reply #4 on: Nov 12th, 2006, 3:22pm » |
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Hi Kim. So sorry to hear you're getting slammed. 
Do you have a clustermasx? They can really make a difference with O2. I'm sending vibes and prayers.
hugs, nani
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Charlie
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Re: Lord have mercy sorry long time
« Reply #6 on: Nov 12th, 2006, 4:31pm » |
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So sorry you have to deal with this horror again.
Feel free to rant and maybe you can give this a try too:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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Lost_in_cluster
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Re: Lord have mercy sorry long time
« Reply #7 on: Nov 12th, 2006, 4:50pm » |
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Dear all bear with me I type like a zomobee I think....I am currently on two pain killers aleternating Percocet and Dilaudid and all it does is make things tollerable. I am on 120mg Verap. and 50mg Tomapax working my way up to 100mg twice a day...I get this bad indigestion from the pain meds so it is making it hard for me to take deep breaths of my oxygen to get through the pain as the beast pelts me over and over before I can even breath. Thanks Ian and Mr Happy I have my cluster mask but have not been able to hook it up do to the relentless hits that I have been getting. I feel like I am dying in side some times. I feel like that movie dying yonge when the man starts to scream for no reason to loud to loud.....It just happens and I feel like I don't know if I am coming or going. I am a nurse and I can't even do my job thanks for the help all. I am sorry if I am not making any sense the drugs are messing with my mind a little off and on...
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Dance as though no one is watching you, Love as though you have never been hurt before, Sing as though no one can hear you, Live as though heaven is on earth. -souza
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Jonny
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Re: Lord have mercy sorry long time
« Reply #8 on: Nov 12th, 2006, 5:00pm » |
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You can type out a long post, but you cant hook up a mask? 
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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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cynjeep89
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Re: Lord have mercy sorry long time
« Reply #9 on: Nov 12th, 2006, 5:02pm » |
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Kim,
I sent you my phone number via instant message. If you need to talk, call me. I'll be home all night.
We want to help
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vig
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Re: Lord have mercy sorry long time
« Reply #10 on: Nov 12th, 2006, 5:07pm » |
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my humble opinion is that's tooooo muCH medicine.
go back to your doctor and be careful
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| « Last Edit: Nov 12th, 2006, 5:08pm by vig » |
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nani
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Re: Lord have mercy sorry long time
« Reply #11 on: Nov 12th, 2006, 5:22pm » |
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You should be able to breathe normally and still get some help from the oxygen. Your verap dose is pretty low, and I think you know the pain pills are likely to do more harm than good. Pay attention to your mood, also. Topamax can exacerbate depression, among other things. This, too, shall pass, Kim. Stay strong.
pf wishes, nani
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Lost_in_cluster
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Re: Lord have mercy sorry long time
« Reply #12 on: Nov 12th, 2006, 5:40pm » |
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Nani the indigestion is my problem do to the pain meds that is tearing up my stomach. Under a neurologist here in town since my hospitalization things have been out of control my meds are all over and I am doing what I can. I just want the Pain to go away.
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Dance as though no one is watching you, Love as though you have never been hurt before, Sing as though no one can hear you, Live as though heaven is on earth. -souza
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BB
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Re: Lord have mercy sorry long time
« Reply #13 on: Nov 12th, 2006, 5:53pm » |
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on Nov 12th, 2006, 4:50pm, Lost_in_cluster wrote:
I am currently on two pain killers aleternating Percocet and Dilaudid and all it does is make things tollerable. I am on 120mg Verap. and 50mg Tomapax working my way up to 100mg twice a day...
I get this bad indigestion from the pain meds so it is making it hard for me to take deep breaths of my oxygen
.... the drugs are messing with my mind a little off and on... |
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Hi Kim,
Your name is Kim , right ?
Sorry to hear you are having a rough time but you need to try to calm down and look at the situation again.
The pain meds are doing you more harm than good. You said it made things tolerable but maybe not even that, as even on them you are not able to hook the clustermasx up nor able to breathe properly. When pain meds start to cause indigestion bad enough that you cant breathe, its serious. You could be developing an ulcer.
Nani is right, your Verapamil is a bit low. How is your BP ? Have you had an ECG to check the heart? Heart pain can sometimes feel like indigestion so you should get it checked out, pronto.
First you should hook up the mask and use oxygen as soon as you feel the headaches, try to breathe slowly and normally but deeply. Panicking and hyperventilating dont help. Hook the mask up now !
Next please go back to your doctor as soon as possible.
1- Check your heart
2- Check your blood pressure
3- Maybe consider an endoscopy to rule out stomach ulcers if it doesnt settle.
4- Talk to your doctor abour upping Verapamil if possible.
5- Talk to your doctor about your pain meds. If you cant do without them now maybe try suppositories and give your stomach a break. Otherwise its best to wean off them.
6- Talk to your doctor about anxiety and what will likely help you.
7- Have you tried a prednisone taper ? It can help dampen all the hits down allowing time for Verapamil and Topamax to kick in.
Consider taking Melatonin at night, starting from 6mg and can be upped to 15 mgs depending on response. It can help ward off the night hits and giving you a good sleep. Getting adequate rest and sleep will help tremendously. Drinking lots of water and keep yourself hydrated will also help.
On top of all this, vent away and ask as many questions as you need to, we are rooting for you.
Painfree wishes and all the best.
Annette
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Lost_in_cluster
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Re: Lord have mercy sorry long time
« Reply #14 on: Nov 12th, 2006, 8:32pm » |
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Hi again
Yes been on Prednisone in the hospital and am still tapering as we speak.
Only been out of the hospital 4 days so haven't followed up on the medications that have been started. All I know is the Dr. that I am to see that is a HA specialist wasn't in till the 14th and the one the monitored me in the hospital was lost. He was in and out of books trying to help me. In the mean time I have know clue of my stay in the hospital. Mom and dad do. I know that I had a Dilaudid PCA and at one point was on versed and haldol to sleep because the hits kept coming and they couldn't stop them. Oh and endomenthocin. Lord knows what my head is all screwed up as you can see. I am trying everyone keep the tips coming thank you.
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Dance as though no one is watching you, Love as though you have never been hurt before, Sing as though no one can hear you, Live as though heaven is on earth. -souza
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BB
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Re: Lord have mercy sorry long time
« Reply #15 on: Nov 12th, 2006, 8:49pm » |
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Hi Kim,
I am so sorry to hear, you are really going through a rough patch right now but please hang tight, it will pass.
I am glad you are going to see a headache specialist. Try to write down as much information as possible about the headaches you are having now to give him a better idea of what is happening.
Have you hooked up the oxygen and start on it yet? It will help a lot.
Regarding tips, there is one more, bit of a long shot but no harm to try and can work quite well. That is to apply ice to your neck, on the back of the neck and the side where the cluster is when getting a hit, leave the ice there until the pain is gone, also can apply ice to the temple and eye. If the ice doesnt work, then try a hot towel ( heat a wet towel in the microwave ). Many have found this to help reducing the pain of a hit, allowing you to remain calm to breathe away on that oxygen.
Please let us know how you go.
Take care,
Annette
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| « Last Edit: Nov 12th, 2006, 8:51pm by BB » |
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Re: Lord have mercy sorry long time
« Reply #16 on: Nov 12th, 2006, 9:02pm » |
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Kim,
You know that the pain meds are no good for most CHers. If you have to have them get them in patch form, at least your stomach will be better.
Do you still have the O2 concentrator. If so and it isn't working then you need to get on bottled O2.
If you need anything you know how to reach me. I will be praying for you.
Paul
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E-Double
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Re: Lord have mercy sorry long time
« Reply #17 on: Nov 12th, 2006, 9:10pm » |
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You know what works.
You know what doesn't work.
You have plenty of information to pass onto docs.
You've been here as long as I have.
Advocate for yourself, get treatment, stop making yourself worse off by taking what you already know will be useless and detrimental and live
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I can't believe that I have to bang my
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Linda_Howell
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Re: Lord have mercy sorry long time
« Reply #18 on: Nov 12th, 2006, 10:29pm » |
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High five to ya Eric..I couldn't agree with you more.
Quote: I am sorry if I am not making any sense the drugs are messing with my mind a little off and on...
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Almost everyone here would reccomend that you get off the Dilaudid as well as the Percocet.
You've been given very good advice here by many. Hopefully you'll decide to take some of it. Let us know which piece of advice worked for you.
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cynjeep89
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Re: Lord have mercy sorry long time
« Reply #19 on: Nov 12th, 2006, 11:55pm » |
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Kim,
I will be home tomorrow, Tuesday, Wednesday and Friday. You have my number...please call me and let me know how you are doing.
Cyn
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Charlie
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Re: Lord have mercy sorry long time
« Reply #20 on: Nov 13th, 2006, 1:39am » |
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You have to knock off the pain meds. They are useless for this horror.....hardly noticeable.
It's like trying to knock out an elephant with a peanut.
Hang onand pay some attention to these people. They know what they are doing.
Charlie
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pubgirl
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Re: Lord have mercy sorry long time
« Reply #21 on: Nov 13th, 2006, 9:24am » |
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on Nov 13th, 2006, 8:48am, Karla wrote:| you mentioned that you are on indomethacin. That is very very very hard on the stomach. I would stop that if needed. It can cause internal bleeding and ulcers. The verapamil dose is quit low. I took up to 960 mg. I know the verapamil effected my breathing rate. It caused my breathing to be shallow. I hated being on it. The higher the dose the worse it got. Maybe this medicine is what is causing that. I would recomend you try going up on it in dosage and if your breathing symptoms get worse you know the culprit. If your breathing doesn't get worse it will only help your ch to stop being on a higher dose. Try to use your o2. I will be praying for you to get all your meds balanced out and for the pain to stop. |
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Karla is right.
If your CH diagnosis is certain, indomethacin is probably unnecessary as it it helps few cluster sufferers.
If your CH diagnosis is wrong, indo may help or even stop the attacks at the right dosage but you need to take additional drugs with it to protect your stomach.
Have you established that your CH diagnosis is correct? i.e. number of attacks, duration, other symptoms etc
W
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| « Last Edit: Nov 13th, 2006, 9:25am by pubgirl » |
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Lost_in_cluster
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Re: Lord have mercy sorry long time
« Reply #22 on: Nov 13th, 2006, 9:47am » |
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 Am trying everyone really. Got the clustermax hooked up last night shakally still not sure how to breath with it the right way???Without doing it ill effectively since it wasn't helpful either hits and I gave up till getting advise from you all. I am as you say loaded with information yes but gosh never have I had it this bad to where I can't function the pain is so great that the Dilaudid although bad I know in it itself is what is keeping me out of the hospital everyone. I hate to go back in Forgive me for being a baby but they were so lost that I didn't know if I was coming or going and I don't want to do that again. I am hoping to get the medications like the Verapamil increased but I do know that the Dr is monitoring my BP closly as is my mother which is one of the pluses of a nurse for a mom right.
Please don't think that I am not listining to a word you are all saying because I am and am thankful for all the advise that you have to offer me I am taking each piece and sharing it with the Dr tomorrow as I go.
Eric
I know that I may seem like a Vet but alas I am not. These are far worse then I have ever experienced before and am at an inexperienced point and just want the pain to stop. Please bear with me and continue to share what works because I need your help. Thank you all...
Sincerly Kim
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Dance as though no one is watching you, Love as though you have never been hurt before, Sing as though no one can hear you, Live as though heaven is on earth. -souza
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aprilbee
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Re: Lord have mercy sorry long time
« Reply #23 on: Nov 13th, 2006, 9:55am » |
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on Nov 13th, 2006, 9:47am, Lost_in_cluster wrote: These are far worse then I have ever experienced before and am at an inexperienced point and just want the pain to stop.
Sincerly Kim |
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Kim, have you had a recent MRI? If you have never had this pain and frequency and duration, it may be something more serious...??? JMO...
I hope you get the relief you seek, we are here for you! 
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Re: Lord have mercy sorry long time
« Reply #24 on: Nov 13th, 2006, 12:39pm » |
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Hang in there and print out the good stuff.
Share this with your docs for a plan of action.
Unless finding relief from the narcs (which it appears you are not) taper off ASAP.
Good luck,
E
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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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