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New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Question, What is the first Prevent I should try
(Message started by: Genoman on Sep 13th, 2004, 5:18pm)

Title: Question, What is the first Prevent I should try
Post by Genoman on Sep 13th, 2004, 5:18pm
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.

Title: Re: Question, What is the first Prevent I should t
Post by thomas on Sep 13th, 2004, 5:24pm
Most people have good luck with verapamil (calan).   I didn't.... :(  The melatonin is a good preventive for night time hits.

Title: Re: Question, What is the first Prevent I should t
Post by Jonny on Sep 13th, 2004, 5:32pm
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 ;;D

........................... ;)

Title: Re: Question, What is the first Prevent I should t
Post by Genoman on Sep 13th, 2004, 5:34pm
Thanks Thomas, Verapamil it is.
Just curious, what did work for you?

Title: Re: Question, What is the first Prevent I should t
Post by Jonny on Sep 13th, 2004, 5:37pm
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

Title: Re: Question, What is the first Prevent I should t
Post by Genoman on Sep 13th, 2004, 5:37pm
That could get old quick Jonny [smiley=hewey.gif]

Title: Re: Question, What is the first Prevent I should t
Post by Genoman on Sep 13th, 2004, 5:48pm
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!


Title: Re: Question, What is the first Prevent I should t
Post by Jonny on Sep 13th, 2004, 5:52pm
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

Title: Re: Question, What is the first Prevent I should t
Post by thomas on Sep 13th, 2004, 5:53pm

on 09/13/04 at 17:32:59, 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 ;;D

........................... ;)

LMMFAO!!!!  [smiley=laugh.gif]

Title: Re: Question, What is the first Prevent I should t
Post by Jonny on Sep 13th, 2004, 5:55pm
Hee Hee Hee ;;D

Title: Re: Question, What is the first Prevent I should t
Post by don on Sep 13th, 2004, 8:55pm
Verapamil. With out question.

Title: Re: Question, What is the first Prevent I should t
Post by Renee on Sep 14th, 2004, 5:41pm
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!

Title: Re: Question, What is the first Prevent I should t
Post by toolong on Sep 14th, 2004, 6:25pm
Take "Jonny's" advice and at least ask about O2.It is my salvation!!!!!David ;;D

Title: Re: Question, What is the first Prevent I should t
Post by bean on Sep 21st, 2004, 6:33pm
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.

Title: Re: Question, What is the first Prevent I should t
Post by Kris_in_SJ on Sep 21st, 2004, 7:58pm
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

Title: Re: Question, What is the first Prevent I should t
Post by Jonny on Sep 21st, 2004, 8:32pm

on 09/14/04 at 17:41:24, 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!


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

Title: Re: Question, What is the first Prevent I should t
Post by Kevin_M on Sep 21st, 2004, 9:18pm

on 09/14/04 at 17:41:24, 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


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


Title: Re: Question, What is the first Prevent I should t
Post by Renee on Sep 21st, 2004, 11:08pm
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.   :-*


Title: Re: Question, What is the first Prevent I should t
Post by Genoman on Sep 22nd, 2004, 11:09am
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?

Title: Re: Question, What is the first Prevent I should t
Post by Renee on Sep 22nd, 2004, 3:33pm
Genoman,

Wishing you tons of luck today at your appointment.   ;)


Title: Re: Question, What is the first Prevent I should t
Post by Genoman on Sep 22nd, 2004, 8:33pm
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.

Title: Re: Question, What is the first Prevent I should t
Post by Kris_in_SJ on Sep 22nd, 2004, 8:49pm
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

Title: Re: Question, What is the first Prevent I should t
Post by BlueMeanie on Sep 22nd, 2004, 10:43pm

on 09/21/04 at 18:33:22, 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.


So do you no longer get CH's. If you don't are you sure you're not episodic ?

Title: Re: Question, What is the first Prevent I should t
Post by bean on Sep 27th, 2004, 1:09pm
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.

Title: Re: Question, What is the first Prevent I should t
Post by thomas on Sep 28th, 2004, 1:30pm

on 09/27/04 at 13:09:01, 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.

Painmeds?  They don't do a damn thing for my ch.  I refuse to take them.

Title: Re: Question, What is the first Prevent I should t
Post by thebbz on Sep 29th, 2004, 9:36pm
The only pain med I will allow is the demerol inj., dont touch the CH but it does allow one to breathe. OH ya and after 3days revving on the pred one can get a little shut eye. Prevents dont work for me the last one they tried was the topomax, hope something works for ya


bb ;;D ;;D



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