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Topic: Question, What is the first Prevent I should try (Read 819 times) |
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Genoman
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Question, What is the first Prevent I should try
« on: Sep 13th, 2004, 5:18pm » |
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I will be going to the Dr. on Wednesday (if they Hurricane does not blow us off the map).
She is very open to suggestions. She gave me samples of Zomig that have been good for the abortive.
I plan to get Melatonin since it seems pretty safe and inexpensive to take.
What is the first prevent therapy I should ask my Dr. for?
Thanks for all the help so far.
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| « Last Edit: Sep 13th, 2004, 5:18pm by Genoman » |
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thomas
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Re: Question, What is the first Prevent I should t
« Reply #1 on: Sep 13th, 2004, 5:24pm » |
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Most people have good luck with verapamil (calan). I didn't....  The melatonin is a good preventive for night time hits.
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Jonny
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Re: Question, What is the first Prevent I should t
« Reply #2 on: Sep 13th, 2004, 5:32pm » |
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Dont know, but at Davcon I will be trying the new Thomas abortive......Thats where I tell him im getting a HA and he knocks me out.......LMMFAO 
........................... 
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Genoman
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Re: Question, What is the first Prevent I should t
« Reply #3 on: Sep 13th, 2004, 5:34pm » |
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Thanks Thomas, Verapamil it is.
Just curious, what did work for you?
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Jonny
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Re: Question, What is the first Prevent I should t
« Reply #4 on: Sep 13th, 2004, 5:37pm » |
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If you find that the Verap does not work alone add some Lithium....ecspecially if your chronic...its the cocktail of chronics but also works for episodics
Talk to your doc
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Genoman
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Re: Question, What is the first Prevent I should t
« Reply #5 on: Sep 13th, 2004, 5:37pm » |
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That could get old quick Jonny 
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Genoman
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Re: Question, What is the first Prevent I should t
« Reply #6 on: Sep 13th, 2004, 5:48pm » |
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Hmmm. Ok. the list grows.
So I will start with the Verapamil then add from there.
Thanks Jonny
I realized today how lucky I was to have insurance. I looked at the Zomig recipt. For 6 Nasal sparys it would've cost me $178!
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Jonny
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Re: Question, What is the first Prevent I should t
« Reply #7 on: Sep 13th, 2004, 5:52pm » |
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Yep, the shit is like gold......I get 6 for $20
You and I are both lucky.
Edit:....But, I get all the 02 I want for free......LOL
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| « Last Edit: Sep 13th, 2004, 5:53pm by jonny » |
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thomas
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Re: Question, What is the first Prevent I should t
« Reply #8 on: Sep 13th, 2004, 5:53pm » |
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on Sep 13th, 2004, 5:32pm, Jonny wrote:Dont know, but at Davcon I will be trying the new Thomas abortive......Thats where I tell him im getting a HA and he knocks me out.......LMMFAO
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LMMFAO!!!! 
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Jonny
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Re: Question, What is the first Prevent I should t
« Reply #9 on: Sep 13th, 2004, 5:55pm » |
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Hee Hee Hee
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don
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Re: Question, What is the first Prevent I should t
« Reply #10 on: Sep 13th, 2004, 8:55pm » |
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Verapamil. With out question.
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Renee
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Re: Question, What is the first Prevent I should t
« Reply #11 on: Sep 14th, 2004, 5:41pm » |
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Do you have low blood pressure?
Verap is a blood pressure med that will lower your blood pressure. If you already have low blood pressure, please consider looking elsewhere.
My neuro actually told me yesterday that verap and lithium is "old school" now for treatment of clusters. Many new treatments are headed our way and some are already available but known as meds for other ailments.
Good Luck!
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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toolong
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Re: Question, What is the first Prevent I should t
« Reply #12 on: Sep 14th, 2004, 6:25pm » |
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Take "Jonny's" advice and at least ask about O2.It is my salvation!!!!!David
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Hey,watch this!I saw it on a cartoon and I think it might work!
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bean
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Re: Question, What is the first Prevent I should t
« Reply #13 on: Sep 21st, 2004, 6:33pm » |
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FOOD:
DON'T EATS:
1. Chocolate
2. Soy Sauce- Miso, Tamari, Shoyu, etc.
3. MSG- this stuff is everywhere, you have to read the labels on EVERYTHING. But once you get the hang of it, it's not so hard. Canned soups, packaged soups, chips, fish sticks, frozen dinners, etc. Basically anything with flavor added. But once you get the hang of it, it becomes routine and you know which brands to buy.
Plus ask the pizza parlor you get pizza from if it's in the sauce.
4. Cigarrettes- fuck healthy, that's another site. This is about cluster headaches, and even being in the same room as someone who smokes will make me have one. Mabye not instantly, but within a few days. His choice.
It's not just me, either. There have been posts here where someone who worked in a bar quit, and their headaches were reduced in intensity.
5. Alcohol- wine, beer, hard stuff, everything.
6. Aged cheese- Bleu, gorgonzola, parmegon, etc. Even american to a lesser extent. And the parmegon in the states is not the real stuff, but I've found it to be better to only eat it once in a while.
7. Coffee
8. Soft drinks with caffiene- I don't know if it's the brown coloring or the caffiene, or both, 'cause a Mountain Dew gave me a HA one time, but pop is out.
9. Saurkraut, pickles- have noticed they will give me shadows.
10. Vegemite, marmite- only valid in UK or Australia.
I think this is a pretty complete list.
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Kris_in_SJ
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Re: Question, What is the first Prevent I should t
« Reply #14 on: Sep 21st, 2004, 7:58pm » |
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Some people are sensitive to foods as triggers, but other aren't. There's a good thread on this somewhere.
Food has never been a trigger for me - nor smoking. In fact, many of us smoke (even though it's bad for us, it also helps with calming after the beast has paid a visit.)
With regard to your questions about meds, here's my recipe for a cluster cycle "cocktail":
- Verapamil ramped to 480 mg/day
- Prednisone taper (helps until the Verap kicks in)
- Imitrex injects to abort (others use O2 - I stick with what I know works for me)
Here's my favorite link for med info:
http://www.future-drugs.com/admin/articlefile/ERN020304.PDF
Good luck with the doc!
Kris
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Jonny
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Re: Question, What is the first Prevent I should t
« Reply #15 on: Sep 21st, 2004, 8:32pm » |
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on Sep 14th, 2004, 5:41pm, Renee wrote:Do you have low blood pressure?
Verap is a blood pressure med that will lower your blood pressure. If you already have low blood pressure, please consider looking elsewhere.
My neuro actually told me yesterday that verap and lithium is "old school" now for treatment of clusters. Many new treatments are headed our way and some are already available but known as meds for other ailments.
Good Luck! |
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For one his Doc would know if he has low BP.
"Old school"?.....what!, so lets wait for the new meds that are heading are way?......mean while the poor bastards in pain.
Man, is that a negative post or what?
Would you mind telling us what these new meds are seeing that im talking old school and you are so up to date on new meds?.....Renee
.......................................jonny
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Kevin_M
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Re: Question, What is the first Prevent I should t
« Reply #16 on: Sep 21st, 2004, 9:18pm » |
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on Sep 14th, 2004, 5:41pm, Renee wrote:| verap and lithium is "old school" now for treatment of clusters. Many new treatments are headed our way and some are already available |
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I thought perhaps you may have wanted to contribute an answer to the question: Which prevent?
......but I see you chose instead to simply disrate our suggestions........ imply knowledge of better......and then turn and leave.
Thank you for your contribution Renee. 
Kevin M
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Renee
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Re: Question, What is the first Prevent I should t
« Reply #17 on: Sep 21st, 2004, 11:08pm » |
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Jonny and Kevin,
I was not trying to disrate your suggestions but rather inquiring into the blood pressure question as verap is not a choice for some because of already low blood pressure. I was merely stating there are other meds besides verap that are successful.
As for the "old school", this was not me that made that statement and I was not given any further information except discussing the meds that I am currently taking.
You would have to ask my neuro what other new meds are available and/or up and coming.
Verap is a fit for many, but not all. 
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Genoman
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Re: Question, What is the first Prevent I should t
« Reply #18 on: Sep 22nd, 2004, 11:09am » |
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Well today is my Dr. appt. I plan to print this link and bring it with me. Along with the "future drugs" link.
I also found out that my insurance will definatlvy cover O2 for me. This is a good thing becasue I also found out that the Pharmacy has been dishing out 6 to 10 Zomig every couple days to me when the prescription benefits plan I have is suppose to allow for only 6 pills a month. I hope this dosen't come back to bite me later.
I got the melatonin. I find I am still waking up between 3:00 and 4:00 a.m. every morning. with a headache. I noticed when I do wake up I feel very tried.
Since I started taking the melatonin I have been waking up to take a pee at least once a night when I have never done this before. Is this a side effect too?
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Renee
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Re: Question, What is the first Prevent I should t
« Reply #19 on: Sep 22nd, 2004, 3:33pm » |
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Genoman,
Wishing you tons of luck today at your appointment.
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Genoman
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Re: Question, What is the first Prevent I should t
« Reply #20 on: Sep 22nd, 2004, 8:33pm » |
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I'm back from my appt. The doctor wrote me a script for Verap. I will not be trying it right away though. She wants me to try the O2 as much as possible to abort the headaches. She also gave me a butt load of maxalt samples and some more Zomig samples along with a fresh scipt of Zomig for me to get filled. She didn't think it was a tremendous deal that I jump back and forth between triptans but to err on the side of caution I will try to go a whole 24 hours without one before I switch to the other. Hopefully the O2 (when it arrives) will help me with this.
We decided to wait to get the Verap filled because I do have a low BP. Today it was 100 over ....hmmm I think 72. She said if I do get it filled she wants me to go to the drug store and have me BP checked everyday.
Well, thanks eveyone for the direction.
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Kris_in_SJ
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Re: Question, What is the first Prevent I should t
« Reply #21 on: Sep 22nd, 2004, 8:49pm » |
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Hi,
Even though your B/P seemed a little low at your doc's, I'm not sure I would worry too much before trying the Verap.
I'm not a doctor and don't pretend to be, but Verapamil is primarily prescribed for irregular cardiac rhythm rather than hypertension. One of its effects can be to lower B/P. There are many on this site who take Verap despite a normal or lower than normal B/P - without any problems.
I just hate seeing anyone trying to go through an entire cycle with abortives alone. The goal for most of us is to shorten the cycle and decrease the intensity. There are other meds out there that don't affect B/P (Indocin is one example). Also, don't forget the Prednisone - for some, it can totally knock the HA's out.
Keep us informed!
Hugs,
Kris
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BlueMeanie
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Re: Question, What is the first Prevent I should t
« Reply #22 on: Sep 22nd, 2004, 10:43pm » |
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on Sep 21st, 2004, 6:33pm, bean wrote:FOOD:
DON'T EATS:
1. Chocolate
2. Soy Sauce- Miso, Tamari, Shoyu, etc.
3. MSG- this stuff is everywhere, you have to read the labels on EVERYTHING. But once you get the hang of it, it's not so hard. Canned soups, packaged soups, chips, fish sticks, frozen dinners, etc. Basically anything with flavor added. But once you get the hang of it, it becomes routine and you know which brands to buy.
Plus ask the pizza parlor you get pizza from if it's in the sauce.
4. Cigarrettes- fuck healthy, that's another site. This is about cluster headaches, and even being in the same room as someone who smokes will make me have one. Mabye not instantly, but within a few days. His choice.
It's not just me, either. There have been posts here where someone who worked in a bar quit, and their headaches were reduced in intensity.
5. Alcohol- wine, beer, hard stuff, everything.
6. Aged cheese- Bleu, gorgonzola, parmegon, etc. Even american to a lesser extent. And the parmegon in the states is not the real stuff, but I've found it to be better to only eat it once in a while.
7. Coffee
8. Soft drinks with caffiene- I don't know if it's the brown coloring or the caffiene, or both, 'cause a Mountain Dew gave me a HA one time, but pop is out.
9. Saurkraut, pickles- have noticed they will give me shadows.
10. Vegemite, marmite- only valid in UK or Australia.
I think this is a pretty complete list. |
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So do you no longer get CH's. If you don't are you sure you're not episodic ?
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bean
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Re: Question, What is the first Prevent I should t
« Reply #23 on: Sep 27th, 2004, 1:09pm » |
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On occasion, mostly after I've went to a friends house where a lot of people smoke, I'll have shadows and mabye eventually ( after a few days) a light HA.
Thats my whole point, is that as I fazed these foods out, my ha's gradually grew less and less, with MUCH less intensity. For the past few years, I haven't had more than a --Im not sure, mabye a 5... 7...??? and some of them have been so painfree, it seems like they're just shadows, but you can tell the difference.
Before, I would laugh at the thought of painmeds. Then I was able to cope with them. Now I don't remember the last time I had to take one.
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thomas
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Re: Question, What is the first Prevent I should t
« Reply #24 on: Sep 28th, 2004, 1:30pm » |
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on Sep 27th, 2004, 1:09pm, bean wrote:
Before, I would laugh at the thought of painmeds. Then I was able to cope with them. Now I don't remember the last time I had to take one. |
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Painmeds? They don't do a damn thing for my ch. I refuse to take them.
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