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Topa vs. Verap (Read 3040 times)
angela.lambert
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Topa vs. Verap
Aug 15th, 2008 at 3:22pm
 
I had a cycle in Jan 07 and nipped it in the butt in a short 2 weeks with no high kip scale headaches while taking 360 mg of verapamil and O2 as the abortive. I was so excited,  I thought, wow, this is it. 

Now, 1 1/2 years later, it has been 5 weeks, tons of headaches, no telling when i will have my headaches on the verapamil.  Some at midnight,  for 3 nights in a row, and I can't abort them on O2.  One at 3am, then nothing for 3 nights, then one at 11pm, then nothing for 4 nights, then on at 4am and so on and the CH's are powerful.  I am all over the place.

A friend calls his father who is a doctor in the lower 48(small alaska island town), and suggests me taking topamax.  I ask my doctor and get the perscription along with imitrex injections (thank God).  I have to start the Topa at 1 a day for 7 days then 2 a day for 7 days so on...  I am in the middle of my cycle and the new perscription regiment doesn't seem promising for about 4 weeks.

I stuck with the one a day on topa and dropped the verapa.  2 days go by and I am some what normal.  Then boom.  Every morning, a kip 6 and every night a kip 7-8.  Its been 4 days+.  I want to start back on the verapa. 

My questions are:
Could I have started the topamax at a higher dose, or worked up faster?

Should I have not changed my prevenitive regiment during a cycle?

Also-Imitrex, they say no more than 1 shot an hour (no more than 2 in 24 hours), anyone done the deed? What could happen?  I know that the pain can lead to terrible choices, I want to know what I am dealing with. Embarrassed

Thanks, angela




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thebbz
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Re: Topa vs. Verap
Reply #1 - Aug 15th, 2008 at 3:37pm
 
Quote:
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Stop using Imitrex and call your doctor if you have a serious side effect such as:
chest pain or heavy feeling, pain spreading to the arm or shoulder, nausea, sweating, general ill feeling;

sudden numbness or weakness, especially on one side of the body;

sudden headache, confusion, problems with vision, speech, or balance;

fast heart rate, agitation, muscle stiffness, hallucinations, lack of coordination, with nausea, vomiting, or diarrhea;

sudden and severe stomach pain and bloody diarrhea;

seizure (convulsions); or

numbness or tingling and a pale or blue-colored appearance in your fingers or toes.



Most I've done is 3 shots in 24 hours. If your doing that, your most likely getting rebounds. Just one step ahead of the demon.
I wouldn't do that again. Powerful constrictors like Imitrex statdose deserve lots of respect.
NEVER MIX TRIPTANS Shocked
Try to find another abortive and mix it up a bit.
I hate it for ya .. Cry
the bb
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midwestbeth
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Re: Topa vs. Verap
Reply #2 - Aug 15th, 2008 at 4:08pm
 
Hi Angela,

I agree with bbz.........triptans can cause rebounds and those rebounds can be powerful.  You can split the imitrex shot and see how that works for you.  See imitrex tip on the left.

Call the Dr. back and see about the prevents.  360 mg of verap is on the low dose side.  Don't stop, lower, or up any ch meds without consulting your Dr.  Bad things can happen.

How are you using the 02?  At a minimum a 15 lpm regulator is recommended, 25 lpm is prefered.  Are you using a non-rebreather mask?

Sorry to hear you are in pain.  Hope your cycle ends soon.

Take care,
Beth

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angela.lambert
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Re: Topa vs. Verap
Reply #3 - Aug 15th, 2008 at 4:12pm
 
Thanks b,

That was more helpful than the doctor I ended up seeing.  She said, when I asked the imitrex question, "they must have only studied that amount and therefore only can perscribe that amount.".... Huh...ok

I have 4 doctors to choose from here in Petersburg, Alaska.  I have seen all 4.  My fav left.  The above was a visiting doctor (she is gone now, TG), One still believes I have migraines with a sinus infection (wants me to take antibiotics) and the other corrects me every time I say something about my ch's ie: "my ch's last 20min to 4 hours"  Doc:"No, CH's last 20 to 2hours"...oops my bad.  The remaining one wants to give me demeral every time he sees me...ahhhh Shocked

angela
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thebbz
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Re: Topa vs. Verap
Reply #4 - Aug 15th, 2008 at 4:18pm
 
Dont suppose, that you have a neuro in Alaska? Doctors Roll Eyes.
Lots of different stuff to try. Go to the doc that at least listens and works with you. Then you can have some control. I've found that  backup from a neuro can whip a GP into shape quickly. Wink
all the best
thebb
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angela.lambert
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Re: Topa vs. Verap
Reply #5 - Aug 15th, 2008 at 5:15pm
 
There are, getting there is the entire battle. 

No roads out.

I am closer to Seattle, than any other major city.  And a ticket to Seatown is close to 2,000 round trip.  Not counting hotels, food, and the visit. Angry

I need to do my research and start soon.  Is it better to go to a neurologist when I am in cycle?
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Re: Topa vs. Verap
Reply #6 - Aug 15th, 2008 at 7:58pm
 
It is not nessasary, although it may be better to in an episode. The key is getting the correct diagnosis and building a treatment plan.
So study up on treatments and therapy's.
thebb
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HAsufferer
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Re: Topa vs. Verap
Reply #7 - Aug 15th, 2008 at 8:15pm
 
i never had any real success on topamax.  as far as i know you have to do the gradual increase.  on a lighter note, i did lose about 20 pounds while on it, but i had to increase to an incredible amount of topamax and i wasnt willing to deal with the side effects of no appetite.  needless to say i gained all 20+ pounds back almost immediately after stopping topamax. 
a 'home' remedy i recently read in a magazine was to rub tiger balm on your temples and back of neck.  started this yesterday and so far CH has been between 1-2 since last night.  no worse but really no better.  they are usually at about 6-7.  at this point i figured anything that can make lower the pain at all is better right?   Huh we'll see how it goes after a few more days.  i'm curious though to all you other CH sufferers, wanna try it.  id love to know if it really works or not.
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Bob Johnson
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Re: Topa vs. Verap
Reply #8 - Aug 16th, 2008 at 11:24am
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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===========
===========
Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
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angela.lambert
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Re: Topa vs. Verap
Reply #9 - Aug 16th, 2008 at 6:07pm
 
Thank you bob!

I never thought to think about my timing on my attacks and taking verapamil.  I have been keeping a (not so good) diary.  I thought at one time I saw a printable version form of a diary for CHer's specifically.  Anyone know a link for me, so I can do my best to transpose my shotty record keeping.

Thank you to everyone, I feel so alone up here in this town.  I have never met anyone (physically) who has or understands clusterheadaches, truly.  You all are angels who help others understand the devil in our heads.

angela

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Garys_Girl
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Re: Topa vs. Verap
Reply #10 - Aug 16th, 2008 at 6:33pm
 
Angela, I'm so sorry about your situation!  But at least you found this site.

As to the headache diary, use this link - then scroll down on the right, and you'll find links to a diary - either in Word format or PDF format.

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Hope this helps,

Laurie

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