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Topic: New and Unusual Med. Combo Working (Read 1678 times) |
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docblondie
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New and Unusual Med. Combo Working
« on: Jul 29th, 2007, 11:34am » |
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I'm a 39yo female, 135lbs
I've had clusters-episodic- since 1989. Cycle was 11mos. free, 6mos. headaches. Nothing worked as a preventive other than high doses of prednisone- 80 to 20mgs over 1 month, then start all over again- for the 6 month duration of the cycle.
In 2001, I went chronic. After many failed neuro. consults and med. combos. and not able to stay on that high of a dose of pred. long term,
I finally ended up in Dr. Maria Carmen-Wilson's office at Tampa General Hospital; Rehabilitation Clinic for Pain Management and Neurology. (Tampa, FL) She prescribed the following combo;
Verapamil 320mgs/day
Topamax 400mgs/day
Prozac 40mgs/day
Bellergal S tabs 2x a day **This is the new/unusual med
Serequel 25mg/day **This is the 2nd new/unusual med
Bellergal S tabs has Ergotamine, Phenobarbitol and Beladonna in it (odd combo)
Serequel, I only use at night as it makes me so sleepy!
On this combination- I have been headache free for almost a year.
Hope some of you will be able to take this to your neuro. and try the new combo of Bellergal and Serequel.
Best wishes,
Chris
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Annette
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Re: New and Unusual Med. Combo Working
« Reply #1 on: Jul 30th, 2007, 5:27am » |
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Thank you Chris for sharing your experience. Its great that the med combo has worked well for you.
Its interesting to note that all the meds you mentioned, apart from Bellergal are all first line treatments for bipolar or schizophrenia.
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MR_FLOOR
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Re: New and Unusual Med. Combo Working
« Reply #2 on: Jul 30th, 2007, 6:02am » |
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on Jul 29th, 2007, 11:34am, docblondie wrote:I'm a 39yo female, 135lbs
I've had clusters-episodic- since 1989. Cycle was 11mos. free, 6mos. headaches. Nothing worked as a preventive other than high doses of prednisone- 80 to 20mgs over 1 month, then start all over again- for the 6 month duration of the cycle.
In 2001, I went chronic. After many failed neuro. consults and med. combos. and not able to stay on that high of a dose of pred. long term,
I finally ended up in Dr. Maria Carmen-Wilson's office at Tampa General Hospital; Rehabilitation Clinic for Pain Management and Neurology. (Tampa, FL) She prescribed the following combo;
Verapamil 320mgs/day
Topamax 400mgs/day
Prozac 40mgs/day
Bellergal S tabs 2x a day **This is the new/unusual med
Serequel 25mg/day **This is the 2nd new/unusual med
Bellergal S tabs has Ergotamine, Phenobarbitol and Beladonna in it (odd combo)
Serequel, I only use at night as it makes me so sleepy!
On this combination- I have been headache free for almost a year.
Hope some of you will be able to take this to your neuro. and try the new combo of Bellergal and Serequel.
Best wishes,
Chris |
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Hey Chris,
I think you mean sinaquan.The generic name for that drug is doxepin and yes I have had this combo exept the Bellergals were on sort of a taper when I took them like I started off with 2 and then went to 1 I can't remember exactly how it went and the Topamax was not in my combo and Prozac was not in my combo and its been awhile but I think the generic for Bellergals is Bellaplas or something like that .The Bellergals are suppose to break the cycle I think,like I said it's been awhile.But you are the first person that I have seen post with those 2 meds(Sinaquan and Bellergals)I thought I was the only one that took them.And to answer your question yes I had some success with both of them.
Dave
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| « Last Edit: Jul 30th, 2007, 6:06am by MR_FLOOR » |
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Bob P
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Re: New and Unusual Med. Combo Working
« Reply #3 on: Jul 30th, 2007, 7:26am » |
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Chris,
Just wondering if you have considered dropping the meds one at a time to see if they are all needed incombo or if it is really one of the meds that is working and you don't need the rest?
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nani
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Re: New and Unusual Med. Combo Working
« Reply #4 on: Jul 30th, 2007, 9:00am » |
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on Jul 30th, 2007, 5:27am, Lotus wrote:
Its interesting to note that all the meds you mentioned, apart from Bellergal are all first line treatments for bipolar or schizophrenia.
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Huh? Which ones are for bi-polar/schizophrenia? I've heard of Seroquel used by bi-polars...as a sleeping pill.
Please enlighten me.
/spelling
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| « Last Edit: Jul 30th, 2007, 9:01am by nani » |
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docblondie
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Re: New and Unusual Med. Combo Working
« Reply #5 on: Jul 30th, 2007, 9:06am » |
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Responding to your responses....
1st, yes they are first line tmts. for schiz. and bipolar- but also frontline tmts. for epilepsy and menopause. These agents work to manipulate the hypothalamus and pituitary glad in similar ways when prescribing for other disorders.
No, I don't mean Sinequin, I have been on that, with no luck. I mean Serequel 25mgs/day
Finally, yes I have tried decreasing the dose of one of these to see if it is the combo or just one- whenever I go off one, or just taper down one, within a few days, the headaches return. I have tried increasing one while tapering down another. I have tried multiple combos of trying to taper these and it seems that it is this particular combination that is working.
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billyjoe
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IRe: New and Unusual Med. Combo Working
« Reply #6 on: Jul 30th, 2007, 10:01am » |
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I feel for you. That is quite the como you've got going. That much Topo would drive me batty.
Best of Luck!
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vietvet2tours
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Re: New and Unusual Med. Combo Working
« Reply #7 on: Jul 30th, 2007, 1:58pm » |
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on Jul 30th, 2007, 9:06am, docblondie wrote:Responding to your responses....
1st, yes they are first line tmts. for schiz. and bipolar- but also frontline tmts. for epilepsy and menopause. These agents work to manipulate the hypothalamus and pituitary glad in similar ways when prescribing for other disorders.
No, I don't mean Sinequin, I have been on that, with no luck. I mean Serequel 25mgs/day
Finally, yes I have tried decreasing the dose of one of these to see if it is the combo or just one- whenever I go off one, or just taper down one, within a few days, the headaches return. I have tried increasing one while tapering down another. I have tried multiple combos of trying to taper these and it seems that it is this particular combination that is working. |
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No mention of Oxygen?
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Annette
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Re: New and Unusual Med. Combo Working
« Reply #8 on: Jul 30th, 2007, 6:49pm » |
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on Jul 30th, 2007, 9:00am, nani wrote:
Huh? Which ones are for bi-polar/schizophrenia? I've heard of Seroquel used by bi-polars...as a sleeping pill.
Please enlighten me.
/spelling |
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You obviously dont know much about bipolar nor schizophrenia, its going to take a looong time to enlighten you on this subject.
First Seroquel is an antipsychotic and is used to treat the psychosis in schizophrenia, it is also first line treatment for the acute mania phase for bipolar disorder. Its most common side effect is drowsiness so its often taken at night and it can help aid sleep.
I dont know what source you heard from that Seroquel is taken as a sleeping tablet but you heard wrong, or you didnt understand the full mechanism of how the med is used.
Topamax and Prozac are well known, I hope I dont have to explain them to you in details, do I?
The combination of Prozac, Seroquel and Topamax is commonly used as first line treatment for bipolar and in some cases schizophrenia. Some psychiatrists also add Verapamil as it does have a stablelisising effect on moods in some people, although not potent enough to be used as such on its own.
Dont believe me? Go check with your psychiatrist.
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Annette
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Re: New and Unusual Med. Combo Working
« Reply #9 on: Jul 30th, 2007, 6:53pm » |
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on Jul 30th, 2007, 7:26am, Bob P wrote:Chris,
Just wondering if you have considered dropping the meds one at a time to see if they are all needed incombo or if it is really one of the meds that is working and you don't need the rest? |
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I cant believe you would advise someone who has been suffering for so long, whose meds are working well for the first time to be painfree to stop/drop their meds ???????? 
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Rosybabe
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Re: New and Unusual Med. Combo Working
« Reply #10 on: Jul 30th, 2007, 8:27pm » |
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Hi Chris!!
I am glad you found something that keeps the beast away, don't matter if it is a combo or a single pill as long as you are pain free and you are able to handle side effects..I don't do good with to many meds, that is just me, but if it works for you..Good luck and many more pain free days for you!! 
Rosy.
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| « Last Edit: Jul 30th, 2007, 8:29pm by Rosybabe » |
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docblondie
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Re: New and Unusual Med. Combo Working
« Reply #11 on: Jul 30th, 2007, 8:46pm » |
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I use Oxygen for an abortive- along with imitrex injections.
What I listed are preventative meds.
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thebbz
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Re: New and Unusual Med. Combo Working
« Reply #12 on: Jul 30th, 2007, 9:19pm » |
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Chris,
Do you work outside of the home? If so how does this combo effect your efficiency and stamina? Thats alot of neurochemical manipulation.  I am currently researching this.  I am not a doctor and am concerned should someone want to treat me with such a combo.  Hope you doing well enough to function and maintain an income. How in your judgement is your quality of life on this treatment?
thebb
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docblondie
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Re: New and Unusual Med. Combo Working
« Reply #13 on: Jul 30th, 2007, 11:04pm » |
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on Jul 30th, 2007, 9:19pm, thebbz wrote:Chris,
Do you work outside of the home? If so how does this combo effect your efficiency and stamina? Thats alot of neurochemical manipulation. I am currently researching this. I am not a doctor and am concerned should someone want to treat me with such a combo. Hope you doing well enough to function and maintain an income. How in your judgement is your quality of life on this treatment?
thebb |
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You pose excellent questions. I am looking into surgery as I cannot tolerate the meds. long term- or don't want to. Luckily, I am able to teach on-line, from home, which allows me a great deal of free time to take things slow.
I am able to bring in an income and support myself while only working part-time. I don't know if I could work full time- the side effects are too numbing.
I am exhusted from the Topamax and Verapamil combo. My BP last Dr's. visit was 87/54
Mix in all the other meds. and side effects, it's tiring just to think about it. The confusion and memory loss from Topamax is the worst. I feel like a dementia patient, only aware of what is happening. It's sad to watch your mind deteriorate- especially after being successful in a career in Higher Education. I have a PhD in psyc. and am looking at the reality that I will never hold a faculty position again. Sad.
Quality of life- even with the side effects and exhaustion, it is much better compared to battling the chronic, daily CH's.
I would not be able to work at all if I didn't have this combo. of meds.
I have resigned to the face that I just have to get through life being tired and struggling with comprehension/memory at times. It's better than having headaches.
I realize this is a huge, possibly toxic combination of meds. for long term. However, when I got in to Tampa General's Clinic I had already been trying different combos for 4 years- which helped but never stopped the headaches- I was still not functioning well with the daily headaches. Then, when Dr. Wilson added the Bellergal S tabs and Seroquel, it all seemed to click and work together and I have not had a headache since Sept. '06 I have tried coming off one of these at a time, increasing one while decreasing another- all the combinations to get to the least amount of medication I need. Each time I try to adjust any of the meds, in any was- the headaches return within a few days or a week. I'll have to stick with this until something changes.
Hope you find something encouraging with your research.
~Chris
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thebbz
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Re: New and Unusual Med. Combo Working
« Reply #14 on: Jul 31st, 2007, 12:12am » |
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You keep hangin tough Chris. Have you looked into alternatives? I would consider this before surgery. What have you got to lose..eh. That pain sure will put you in a corner wont it. I wouldn't give up on a staff position just yet. Talk to your doc about....clusterbusters.com
See if you can avoid the knife.
all the best to you 
thebb
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nani
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Re: New and Unusual Med. Combo Working
« Reply #15 on: Jul 31st, 2007, 12:45am » |
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You said:
on Jul 30th, 2007, 5:27am, Lotus wrote:
Its interesting to note that all the meds you mentioned, apart from Bellergal are all first line treatments for bipolar or schizophrenia.
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The meds Chris mentions are:
Verapamil ( a calcium channel blocker)
Topamax (an anti-seizure med)
Prozac (an antidepressant)
Bellergal and Seroquel
Since I don't have a psychiatrist, I'm not familiar with all the possible off label uses and combos to treat bi-polar. Do you know this from personal experience, or do you have a link?
My (I'll admit somewhat limited) understanding is that bi-polars shouldn't use anti-depressants. And, with my also limited knowledge of schizophrenia, have never heard of this combo. I assumed it was still being treated with standard anti-psychotics like thorazine and compazine. The two CH drugs that are common treatments for bi-polars are lithium and Depakote. An off label use for zyprexa is as a CH abortive (in smaller doses than used as an anti-psychotic). Where might verapamil fit into a mental health use? Oh, and as you stated, Seroquel can treat the mania phase, where as you know, people have a hard time sleeping. It's used at bedtime so they can sleep.
Chris, I'm with the BBZ here... look at alternatives before surgery.
pf wishes, nani, who broke a 5 year chronic cycle with clusterbuster treatments
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rolo65
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Re: New and Unusual Med. Combo Working
« Reply #16 on: Jul 31st, 2007, 1:09am » |
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All I can say is that I was at my worst when I was cocktailed out on all those meds.
I personally would rather live with scuba gear 24/7 than to be sooo drugged out, but then again the drugs don’t work for me so that kind of bends my opinion a bit.
With the cost of all those meds you could be on pure O2 24/7 for probably less payola.
I would be in such a stupor that I’d probably get away with shooting the doc that put me on all that crap at one time, if I could remember how to get to his office.
Good luck, PF wishes,
Rolo..
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tommyD
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Re: New and Unusual Med. Combo Working
« Reply #17 on: Jul 31st, 2007, 6:56am » |
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Quote:| I cant believe you would advise someone who has been suffering for so long, whose meds are working well for the first time to be painfree to stop/drop their meds ???????? |
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I can't believe you would encourage someone to keep taking drugs they don't need.
-tommyD
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Annette
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Re: New and Unusual Med. Combo Working
« Reply #18 on: Jul 31st, 2007, 7:01am » |
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on Jul 31st, 2007, 6:56am, tommyD wrote:
I can't believe you would encourage someone to keep taking drugs they don't need.
-tommyD
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When and where did you see me encourage people to take meds they dont need?
What meds people should be on and what dosages they should be on is the private matter between themselves and their treating doctors.
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Annette
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Re: New and Unusual Med. Combo Working
« Reply #19 on: Jul 31st, 2007, 7:12am » |
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on Jul 31st, 2007, 12:45am, nani wrote:You said:
The meds Chris mentions are:
Verapamil ( a calcium channel blocker)
Topamax (an anti-seizure med)
Prozac (an antidepressant)
Bellergal and Seroquel
Since I don't have a psychiatrist, I'm not familiar with all the possible off label uses and combos to treat bi-polar. Do you know this from personal experience, or do you have a link?
My (I'll admit somewhat limited) understanding is that bi-polars shouldn't use anti-depressants. And, with my also limited knowledge of schizophrenia, have never heard of this combo. I assumed it was still being treated with standard anti-psychotics like thorazine and compazine. The two CH drugs that are common treatments for bi-polars are lithium and Depakote. An off label use for zyprexa is as a CH abortive (in smaller doses than used as an anti-psychotic). Where might verapamil fit into a mental health use? Oh, and as you stated, Seroquel can treat the mania phase, where as you know, people have a hard time sleeping. It's used at bedtime so they can sleep.
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I am not here to discuss meds for bipolar or schizophrenia, its the wrong board for that. I can tell you as a practising GP that Topomax, Seroquel and Prozac is a combo very commonly used for bipolar and in some cases schizophrenia. Whether you believe me or not its your choice. You can go ask your GP, he or she would know this too.
In fact, some people here have bipolar as well as CH and indeed they are very familiar with such use of those meds.
By the way, why dont you go to a Bipolar support chatroom and try telling people there that they should not be on antidepressant? Or telling them that Seroquel use for bipolar is off label? Your understanding of bipolar is indeed very limited.
All I wanted to comment in this thread in response to Chris is that it is interesting to see how these meds designed for bipolar and schizophrenia can also be used with success for CH, same as zyprexa.
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docblondie
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Re: New and Unusual Med. Combo Working
« Reply #20 on: Jul 31st, 2007, 8:10am » |
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Hello Fellow supporters,
Just to make sure I'm clear in what I am sending- I will research surgery prior to that decision. Something I may have failed to get across; this combo is my last chance/try anything before surgery. I have tried it all- short of heavy narcotics all the time, which I would lose my life basically. The O2 works for abortive for me- makes no difference if I am on it 24/7 Been there done that.. I've tried it all- trust me, it's been 17 years of trying to find meds that prevent after going chronic in '02, the search became more intense and more trial/error with different solutions. This finally works. Options I have before me if I need to change the meds I am on- or they stop working;
Back to high doses of Prednisone.
Try Narcotics 24/7
Neither of these seem possible- the prednisone will send me right back to where I was before this combo worked- (organs on the brink of failing) Naracotics will most definately end my quality of life- as you all know the amount of narcotics we have to take/be on to dull the pain- I will be an addict immediately and unable to work to support myself.
My question now is--do I pursue the surgery when I am healthy or wait for my body/organs to deteriorate more to where recovering from that kind of surgery would be more difficult? Ay Yay Yay!
BTW; another thought on the seroquel, my dose is 25mgs. I work with Bipolars and know their dose is 200mgs 4x a day- total of 800mgs a day- Huge difference in treatment.
Yes, I will wait for the surgery- but wonder when the best time is to have it- what do you think?
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BarbaraD
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Re: New and Unusual Med. Combo Working
« Reply #21 on: Jul 31st, 2007, 9:17am » |
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What kind of surgery are you talking about? I've had a stereo-tactic radio-frequency trigiminal rhizotomy and it didn't work and now I'm numb on the left side, have optic nerve damnage and a paralyzed left jaw muscle (it was my last hope at the time - 99).
If the meds are working - don't even consider the surgery (my opinion). Topamax has been my miracle drug (my leveling out dosage is 100mg which I'm on now) and Trazadone (anti-depressant) along with it. I've taken it since 99 and it's given me a lot of good results. I still get breakthrus, but it beats 8-12 headaches a day. I take all my meds at night and don't experience the "bad" side effects that others report.
I've been up to 400mg of topamax, but got suicidal (didn't realize it, but someone who knew me well realized it and got me back down to a dose that stopped that).
We're all different and what works for one won't work for the next. And it doesn't matter what it's "normally" used for - if it works on CH - so what? Lordy, when I was episodic - one episode this neuro put me on something for post-partum bleeding and it worked that cycle - pharmachist eyed me funny (at my age) but the darn stuff worked that cycle = didn't do a thing the next.
But just a hint (from years of experience with the stuff) take the topamax at night and see if the side effects slow down a little.
Hugs BD
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Re: New and Unusual Med. Combo Working
« Reply #22 on: Jul 31st, 2007, 2:54pm » |
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Whilst I view surgery for CH with a fair degree of horror having known a few personal tragic stories from sufferers I have met I have to ask if you have researched the ONSI procedure as an alternative to DBS? This one at least is not invasive although I'll be very honest Chris and say that unless someone had tried every med combo to no success including alternatives I would do everything I could to talk them out of surgery.
Surgery (in my opinion) is for people who have absolutely no quality of life left. I hope you never get to that point but please understand that whilst we have reservations about the efficacy of surgery we will support you with your choices.
All we want is to make sure that you have all the information, the good and the bad to make YOUR decision about how todeal with YOUR life. We aren't attacking you, just playing Devils Advocate although I understand how sometimes badly worded posts can seem like an attack. I'm from England (duh!) and we do phrase things differently which might seem abrasive sometimes but I can assure you that isn't my intention and I'll do all I can to help you find out about ALL your options. I know we have chatted in your past visits to ch.com and I was sorry to see you come back with the news that things hadn't improved dramatically. I know you are pretty much pain free but it is at a high price.
Stick around, if nothing else we can support you and maybe make you smile once in a while! No one should be alone with this and now you've found us you don't need to be.
Helen
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Re: New and Unusual Med. Combo Working
« Reply #23 on: Jul 31st, 2007, 5:16pm » |
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on Jul 31st, 2007, 8:10am, docblondie wrote:| Yes, I will wait for the surgery- but wonder when the best time is to have it- what do you think? |
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Only after you've tried the hallucinogenic route.
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Re: New and Unusual Med. Combo Working
« Reply #24 on: Jul 31st, 2007, 5:51pm » |
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Thanks Brew.
thebb
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