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rain6torm
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sanomigran and migralieve
« on: Mar 6th, 2003, 8:57am » |
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i'm a newcomer to this site and so far cannot find any reference to a couple of the medicants i am on at the moment:- Sanomigran & Migralieve[Pink]. I've been put on the sanomigran-daily & long term-as the doc says it dilates the blood vessels in the head, therefore reducing pressure so consequently,the pain. Is he telling me the truth? Also, the migralieve only seems to work if it feels like it wants to!..generallyafter an hour or so of pain. I've forgotten the names of most of the pain-relievers i've been prescribed over the last seven or eight years, but never has one been consistant...what works one day seems worthless the next! Also, do any of you out there agree with me that G.P.s appear to take cluster headache pain seriously & are genuinely sympathetic & helpful in trying to find a solution, but hospital consultants behave as if we are hypochondriacs taking up their valuable time?
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dizzyd
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Re: sanomigran and migralieve
« Reply #1 on: Mar 6th, 2003, 6:47pm » |
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Dear rain6torm,
I have not heard of any of the meds that you are taking for clusters but there so many out there I am sure someone here heard of them.
In response to your comments on GP's being sympathetic and hospital consultants not being so, here is my take on that,
I feel that there are very few doctors out there who actually understand cluster headaches and how effectively to treat them and most importantly to dispense medicine according the needs and imput from the patient. I find that GP's are generally understanding, as patients tend to have a more active relationship with them because they see them more often, but that they are not too educated on the BEST way to treat and tend to give more inferior and easier meds.
As to hospital consultants, [/i]if you mean emergency room people,[i] then I agree with you. Most attendants that I have had contact with treat like you are a drug addict looking for a fix and are annoyed that you have [/i]bothered[i] them at all. I try to stay away from any hospital or emergency room for my clusters as it is hard to deal with the pain; no-one needs negative judgment from ignorant medical persons.
I get all my cluster treatment from a Neuro. She is current and experienced and completely understands. She tends to be a bit too conservative based on what other docs prescribe for other people on this board but I have been going to her for 15 years and she "knows" me and what I go through so I stick with her.
Anyway, as they say, whatever works for you is good, the one thing that we definitely all have in common is the pain................
Take Care,
DizzyD
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Prense
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Re: sanomigran and migralieve
« Reply #2 on: Mar 6th, 2003, 8:58pm » |
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I am only making an assumption here...
GP listens to you go on and on and on about your pain symptoms and asks a few questions about your med history and lifestyle "stuff" (for lack of a better word). Then, he/she excuses themselves and runs off to check their BookOKnowledge, which btw prolly has a copyright date of 1987 at best. Pain centered at eye, check!...Uncontrolled tearing of affected eye, check!...Nasal conjestion on affected side, check!...Ok, cluster, chronic or episodic., hrmmmm. Let's see...it's at the end of winter, he claims he typically gets them this time of year.... Oh yeah, definately episodic! GP returns with your prescription of a calcium channel blocker and maxalt and sends you on your merry way.
Either way, GPs are general mechanics for people. They ask questions to solicit a prescribed response. Do they really sympathize with the PT's pain? Prolly not unless they are experiencing an attack right on the spot in which the PT would prolly be in an emergency room anyway. They sympathize with anyone who claims pain, but they cannot even begin to understand the severity of the pain unless they have experienced it themselves. I do not imagine even an observer of a clusterhead on a 10 could even imagine the pain even though they are seeing it's effects.
Personally, I don't care if the doc gives 2 cents about the way I feel as long as he/she takes care of it! I am not paying them to be nice, just end the misery. I would imagine a neurologist would act very differently. Very generalized I know and just my own assumption.
To answer your meds question...I also have not heard of these, but from what I gather, the standard preventive treatment seems to be meds that "relax" arteries. Bloodpressure medication, calcium channel blockers, etc... As far as the migralieve, just from the name it sounds like a migraine med which I think maxalt is too (abortive). Prolly a med that works on some, but not on others. I really think some docs are "salesmen" for some of these drug manufaturers hehe.
ER visits...no idea, I don't think I could make it to an ER if I felt like I needed to go anyway. Although I would predict that they would attempt to treat the pain, not the source of it and your attack would prolly be over before the meds kicked in with a 3 hour "high" on the tail end. Oh well. /rant off
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Ueli
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Re: sanomigran and migralieve
« Reply #3 on: Mar 6th, 2003, 9:10pm » |
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Hi Rain,
Welcome to the board. Take a look around, there is much to learn. And don't forget to complete your profile 
A sympathetic G.P. is a good start, but it looks to me yours has not yet found a golden way to treat clusters.
Pain-relievers: There isn't any, neither ordinary nor narcotic, that can put more than a dent to cluster pain. Although, many believe in their effectiveness when the pain subsides after half an hour or so. But that was simply the natural end of the attack; the pain relievers didn't help towards this, but are responsible for the stomach upset and groggy feeling you get afterwards.
Pizotifen (trade name: Sanomigran) is basically an appetizer and mood enhancer. It does this by messing with serotonin and other neuro transmitters. Doing this it also has sometimes success in preventing migraines. In the UK Pizotifen is on the list of approved treatments for CH, but we have yet to hear about someone who had success with it.
Migralieve is a mixture of herbs and some vitamin B2. On a web site of a health food supplement supplier, who wants to sell his stuff, I've read: Migralieve soothes the feeling of headache pain. I think you agree, this is a bit less than what we want to fight a cluster attack.
I suggest you read the information on this site and on the O.U.C.H. site. You'll learn:
Preventatives: Every clusterhead should try Verapamil as a preventative. The difficulty here is that many doctors are reluctant to prescribe a high enough dose: The therapeutic level starts usually at 360 mg/day, much higher than used for heart conditions. But only if Verapamil does nothing at a dose of 1000 mg/d or if the side effects get intolerable a switch to other preventatives, as the mind bending anticonvulsants or antidepressants, should be considered. As Verapamil takes about a week to show effects, longer if the dose has to be increased, a short Prednisone burst may be used to bridge the delay.
Abortives: There a only two that deserve that name: 1) Breathing 100% pure oxygen as soon as an attack raises its ugly head. This is cheap and practically free of side effects. 2) Sumatriptan injections (Imitrex, Imigran) kill the beast in 5 minutes. Imitrex pills take far to long to take effect. Some people afraid of needles use Imitrex nasal spray or Rizatriptan (Maxalt MLT) tablets (that dissolve under the tongue, not in the hand). These take a little longer than the shots.
Print out as much about these meds as you can and bring it to your doctor, maybe he is willing to work on an effective treatment with you. The alternative would be a referral to a neurologist with experience in treating CH.
PFNADs
Ueli
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JohnM
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Re: sanomigran and migralieve
« Reply #4 on: Mar 7th, 2003, 4:23am » |
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nicely put Ueli
John
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Prense
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Re: sanomigran and migralieve
« Reply #5 on: Mar 8th, 2003, 1:06pm » |
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I hear ya...after a 10 day bout with the beast, I had no alternative except an ER visit. I normally get hit 3-4x a month year round. This 10 day non-stop action was a new one for me and I could not tolerate another day of it. Unfortunately, I have to deal with military hospitals who did not have time to see me yesterday, so I pretty much told them to piss off and away to the town's ER I went. The doc I saw at the ER took me off Verap mainly because of the side effects. Maxalt wouldn't even touch the beast--ever. They ended up doping me up so much that although I still had the HA, I really didn't give a damn. The doc left me with prescriptions of Inderal and Indocin. Additionally she gave me Darvocet for pain. <sigh> I anticipated all of this prior to heading to the ER, but I was left with no alternative. I am still waiting for the Neuro referral that I asked the mil hospital for. I feel like I am at the end of my ropes clinging on to not much hope. In the end, if they do not prescribe it for me, I don't get to try it. This is really becomming old quickly.
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