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Topic: Triggers....I'm in tears (Read 767 times) |
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Samiam
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Triggers....I'm in tears
« on: Feb 26th, 2007, 8:00am » |
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Hi Everyone,
I have had Cluster's for well over 26 yrs. The last 6 1/2 yrs I have been in remission only to come out 2 nights ago. I'm so upset I just don't know if I can handle this again. I've been really sick the last month with the flu and have been dealing with thyroid and Adrenal problems. Now to throw this into the mix I'm ready to check out. How much can anyone person deal with. I have a supportive family but I'm tried of always being sick. I'm so out of the loop I don't have a clue as to what new meds are out there. Almost all the preventives that I have used never worked. I'm not able to take Imitrex anymore due to angina so what's left. Please help me I'm really scared. I just don't know if I can do this....I don't have a clue as to what could have triggered this. Could antibodic's do this? Right now I'm taking Cortef and Armour along with DHEA.
Sami
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chewy
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Re: Triggers....I'm in tears
« Reply #1 on: Feb 26th, 2007, 8:17am » |
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Heres what works for me.
Abortive:
Imitrex injection 1/2 dose
Preventative:
Verapamil 480 mg per day
Melatonin 9 mg per night
Prednisone taper 1-2 weeks after starting verapamil.
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nani
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Re: Triggers....I'm in tears
« Reply #2 on: Feb 26th, 2007, 8:18am » |
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Hi Sami. Sorry you're back in cycle. 
What's new? First, do you have oxygen? Look over at the link on the left for the proper setup. Red Bull is new. Many people find that it (and other energy drinks with taurine and caffeine) aborts very quickly. You have to slam the whole thing back at the beginning of a hit.
Kudzu is also new. It works very well for many as a prevent. There are threads on the meds board to look over. The nice thing is that it's used for migraines and angina in Chinese medicine. It may help you in more ways than one. Keep us posted.
pain free wishes, nani
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| « Last Edit: Feb 26th, 2007, 8:25am by nani » |
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pattik
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Re: Triggers....I'm in tears
« Reply #3 on: Feb 26th, 2007, 8:20am » |
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Sami,
Since you haven't had to deal with CH for a while, I suggest you do as much reading here as possible, print out some of this information, and take it into your doctor. Oxygen has been a very effective abortive for many CH'ers--check out the link on the left for more info. Here is a link with more information. Considering your other health issues, you will need to consider therapies which will not interact negatively for you. http://www.brightok.net/~mnjday/chtherapy.pdf
Welcome to the site, and I hope you find helpful information and support here.
pat
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Samiam
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Re: Triggers....I'm in tears
« Reply #4 on: Feb 26th, 2007, 9:04am » |
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on Feb 26th, 2007, 8:17am, chewy wrote:Heres what works for me.
Abortive:
Imitrex injection 1/2 dose
Preventative:
Verapamil 480 mg per day
Melatonin 9 mg per night
I am unable to take the imitrex due to angina. I've already tried the verapamil before and was up to 800 mgs a day didn't work
Never knew about the melatonin 9 mgs. Is there any side effects from this? What does it calm to do.
I'm beside myself. I just called my neuro to get an appointment and find out that he isn't taking on any new patients and since I haven't been seen in over 6 yrs I would be considered a new patient not to mention they no longer have my very large medical chart. They got rid of it so they tell me. Now what am I going to do....this had a very long history along with hospital stays.....I just don't know how I'm going to do this. I think in a way it's better to have cycled every year then to have a break and be left out to dry.....
Sami
Prednisone taper 1-2 weeks after starting verapamil. |
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Bob_Johnson
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Re: Triggers....I'm in tears
« Reply #5 on: Feb 26th, 2007, 9:25am » |
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Number of us have had good success with this one and it should not be a consideration re. your heart.
Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Bob Johnson
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Guiseppi
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Re: Triggers....I'm in tears
« Reply #6 on: Feb 26th, 2007, 9:31am » |
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Sorry you're back! We all go through the agonizing, soul searching.."What triggered these damn things to come back?" No one really knows yet what makes them start up again so I doubt it was anything you did! The beast just decided it was time to come back.
I use lithium as my prevent when on cycle. I'm 46, male, weigh 190 and use 1200 mg a day when on cycle. Takes about 2 weeks for it to ramp up so I do a prednisone taper to get me over the hump.
I use oxygen as an abortive along with oral cafergot. For the really bad ones I'll do an imitrex jab, which I see you can't use.
I'd strongly suggest you try the oxygen route if you haven't already. It has no side effects, it's cheap, and it works to abort within 10 minutes for me. Good luck to you I hope you find some relief soon!
Guiseppi
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Samiam
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Re: Triggers....I'm in tears
« Reply #7 on: Feb 26th, 2007, 10:00am » |
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I tried the oxygen that too didn't work for me. What really use to work was DHE 45 injections. How we handled it was since I would get my H/A when I woke up I would wake up and take the shot right away with or without the headache.
Then they went to imitrex nasal and that worked kinda but I was taking 2 a day for 6 weeks.
Is it possible to only get a couple and go back into remission? My pass history was once they started they had a course to follow but then again I would never go in remission. It's only been the last 2 cycles that this has happened. The first time I was in for 2 yrs the second was 3 1/3 and now almost 6 yrs. But since I was on thyroid meds that is what I thought kept the clusters away. Now I'm not sure if that was true or not.
I can't tell you how upset I am about all of this. My poor kids have seen me so sick the last 2 yrs when we switched over to armour and I would have hyper phases. I truly thought that was getting ironed out now this is thrown into the mix. All they see is a sick mom and that kills me. I'm too young for all of this shit.
I'm worn down and I'm tried and scared. I just don't see a light at the end of the tunnel. I know many know just how I feel when they are thrown back into this.
Now to find a Neuro that will see me before 6 weeks. Life sucks right now....
Sami
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LS
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dont count out oxygen
« Reply #8 on: Feb 26th, 2007, 10:30am » |
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samiam, im very sorry you're clusters are back wreaking havoc on you and your loved ones.
I think you should give oxygen another shot. You need your neurologist to write you a script that allows at least 12L/min flow rate..12L/min doesnt even do it for me, i need 15L/min and thats what i would recommend to anyone that hasnt had success. However, this next point is key. I'm assuming that you used the conventional non-rebreather mask with holes at the nose and the rim of it is not padded or insulated in any way its just simply plastic all round. Anyway this mask doesnt deliver even close to 100% oxygen which is what you need to abort the attack. If you check out www.clustermasx.com there is a mask designed by a cluster sufferer in the UK which is an absolute lifesaver and i mean that literally. Without the oxygen and clustermasx i was ready to call it quits...please give o2 another try, and make sure you always have it close by because you need to start inhaling at the first signs of the attack...im literally never further than 15 minutes from my o2 tank.
all the best
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starlight
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Re: Triggers....I'm in tears
« Reply #9 on: Feb 26th, 2007, 12:49pm » |
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Samian,
Do not despair.
You said you tried O2 and it didn't work. I went through a cycle where it didn't work--lo and behold it was because I did not have a high enough amount or the right mask. Please check oxygen info button on the left. You need the right amount or it will not work also the right mask. Don't give up. Also have you tried verapamil?
Edited to add: you can get a prescription for O2 from a family doctor--there is no need to wait 6 weeks until you can see a neurologist. Just insist on the O2. If you have problems getting it from one doc, just switch doctors and insist, insist, insist. You have to advocate 100% for yourself when it comes to getting the O2 even though it is the last thing you may feel like doing while you are dealing with this. Get yourself set up and let us know how it goes.
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| « Last Edit: Feb 26th, 2007, 12:52pm by starlight » |
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starlight
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Re: Triggers....I'm in tears
« Reply #10 on: Feb 26th, 2007, 12:55pm » |
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Also yes it is possible you may only have a couple and go back into remission. Take this one day at a time. Do not assume the worst. It won't help you to do that. Call your doctor today for O2.
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Samiam
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Re: Triggers....I'm in tears
« Reply #11 on: Feb 26th, 2007, 2:34pm » |
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OK....I'm hanging on by a thread. I already don't feel well due to a hyper phase that I'm in and I'm shaking like a leaf due to adrenals. So this being thrown into the mix just isn't helping. I have never came upon something that could bring me to being snibbing idiot. I can't get anything until I see the neuro next week. What the hell am I going to do now. I did get fironal to hold me over. And I guess I will keep an ice pack on hand. I'm really afraid that I'm going to crack. Thanks for telling me it can be that I will only have couple then go back to remission. My demon hits at night right around 11pm or an hour after I go to sleep.
Sami
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thebbz
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Re: Triggers....I'm in tears
« Reply #12 on: Feb 26th, 2007, 2:59pm » |
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Try the coffee and lots of it fast when the HA starts. There also is possiblity of using welding 02. Some fire stations may help you out with the 02 as well. Red bull is a double shot of caffeine and tuarine, sometimes this will abort as well. Hang tough, we all know it's hard but you can do it. ER is always there. Good luck at the neurologist.
jb
Might try 6mg of melatonin before bed.
all the best
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| « Last Edit: Feb 26th, 2007, 3:00pm by thebbz » |
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artonio7
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Re: Triggers....I'm in tears
« Reply #13 on: Feb 26th, 2007, 3:15pm » |
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Sami,
I'm very sorry that you are going through this. I will not offer you any suggestions for relief as there are others here with far more experience than I who are covering all the bases. I suggest that you find another Neurologist.
What I can offer is my prayers that you come through this as quickly as possible. You are not new here and are amongst friends. Keep your chin up... as this too shall pass.
with warm regards,
Tony
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Samiam
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Re: Triggers....I'm in tears
« Reply #14 on: Feb 26th, 2007, 3:34pm » |
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Thank you all so much. You will never know just how much it has ment to me that you guys have come to my aide. I can't tell you how scared I am that I will never be right again. I don't know how any of you deal with this on a daily bases.
OMG you just don't know how good you have it when your feeling good. I would give anything to be there again. One thing I have figured out but I don't know if this has anything to do with it is I stopped taking my mag/Cal/zinc about 4 weeks ago due to being so sick to my stomach during a hyper phase. I was taking a pretty high dose at night. I started back today and I guess we will see if that helps. Also they are moving my thyroid meds around. I have been under big time stress also along with having the flu not to mention I'm in Philly and the weather changed Sat night and got real cold with snow that came in so it could be anyone or all of them that triggered it. I have such pressure in my head like it's going to blow off.
Sami
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cynjeep89
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Re: Triggers....I'm in tears
« Reply #15 on: Feb 26th, 2007, 8:05pm » |
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Sami,
Check your pm's.
Cyn
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Lobster
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Re: Triggers....I'm in tears
« Reply #16 on: Feb 27th, 2007, 2:27am » |
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You could give one of the alternatives a shot, should the other treatments come up short or you do not object to such things.
Look up RC Seeds and Psilocybin (aka shrooms) on this site and perhaps at www.clusterbusters.com
Several us of are trying out those solutions. I have personally been largely PF for 3 years thx to those.
Best of luck, whatever you might go with.
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Samiam
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Re: Triggers....I'm in tears
« Reply #17 on: Feb 27th, 2007, 7:15am » |
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Cynjeep, I got it and cried. I can't tell you how much that ment to me. My labs just came back and on top of all of this thyroid and adrenals I now have "Mono" so I guess that maybe it just too much for my body to handle right now. My thyroid meds are way too high also so we are stopping them for a couple of days then will resume at a lower dose. The panic attacks are the worse and always waiting of the other shoe to drop.
Lobster, I'm not above trying "ANYTHING" I will check into this as soon as I can. I added in Cal/Mag back into my diet. I stopped this when I got sick due to nausea a couple of weeks ago. Up until then I was taking this for 3 yrs.
Again you guys are the best of the best. The support just can't be measured.
Sami
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Brew
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Re: Triggers....I'm in tears
« Reply #18 on: Feb 27th, 2007, 12:16pm » |
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Keep in mind that, in order for the alternative treatments to work effectively, you should be "de-toxed" from your other meds. This applies to CH meds, but I'm not sure if it would apply to your other non-CH meds as well. You should check into that - perhaps talk to someone who has gone the "alternative" route.
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thebbz
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Re: Triggers....I'm in tears
« Reply #19 on: Feb 27th, 2007, 3:23pm » |
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clusterbusters.com
Hang tough, try to take it one thing at a time. CH will not kill you. You need to address the hormonal and immune issues, the rest will fall into place just fine.(maybe your emotions will stabilize) Get stable and read the buster site. O2 is a good one for you. Dont be scared, be tough.
all the best
jb
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Samiam
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Re: Triggers....I'm in tears
« Reply #20 on: Feb 28th, 2007, 11:29am » |
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OK guys so far I had 2 nights with on shadows. I'm hanging in there I truely am but I'm so praying that this will go dorment again once my levels come down from thyroid meds. I've gone hyper. I've been using a lot of ice packs and just taking it easy. Not sure which end is up with all this stuff and now having "mono" on top of this it's hard to figure out which is from what. Just knowing that someone else understands the fear and the pain is more then words can tell. I also can't do the caffine due to the panic attacks that I get from going hyper. I'm just a mess. I swear when this all gets fixed I'm never getting sick again. It's just too hard on my boys and my hubby.
Sami
Taking it one day at a time.
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Brew
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Re: Triggers....I'm in tears
« Reply #21 on: Feb 28th, 2007, 12:06pm » |
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on Feb 28th, 2007, 11:29am, Samiam wrote:| I swear when this all gets fixed I'm never getting sick again. It's just too hard on my boys and my hubby. |
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I will bet you a year's salary that it won't be your choice. I think you know that, too. What you need to do is, as bbz pointed out, get the hormonal levels under control so that you have a fighting chance to cope with other illnesses. That's what it's all about - learning strategies for coping. As he stated so eloquently, CH will not kill you. You must learn how to cope with it and live between the hits.
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