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Topic: what happened to sansert? ANd insurance rambling (Read 461 times) |
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DrewZee
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what happened to sansert? ANd insurance rambling
« on: Aug 28th, 2003, 2:37am » |
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old newbie here. I rarely post. Chronic sufferer that generally gets 2-3 hits a week off cycle, at night (9-12pm and the one hour wake up call from sleep). On cycle I get hammered daily and they will start early mornings and afternoon, plus the nightly.
I have in the past used prednisone for a week taper on off and sansert for daily control. Tends to keep me off cycle and I get 2-3 a week on average, at night. I had to take my sansert vacation last year and just stopped altogether - lasted about a 6 months without it or imitrex before the s*** hit the fan again.
SO....I had moved and new doctor, etc. He gave me the pred, and a script for sanserts per my prior doc instructions, and no drugstore I can find can fill the sansert. Say its discontinued. The sansert was the only thing i found that seemed to work.
Anyway, now I have gone back, doc got me a O2 script and put me on veramil now at 300/day taken once at night. I have had no improvement with the verap and actually think its gotten worse. I oops'd and forgot a dose on a couple occasions and no headaches? I know a lot of you swear by the verapamil - how long does it take to kick in?
Insurance (CIGNA POS--- and you know what the POS means, right?) wouldn't approve the O2, so I had the doc call and hammer them, got a letter from them approved, but I have no idea how to fill this thing and I am almost always out of town. Also the bastards only let me get 6 imitrex per 25 days ( I use the inhalers, never tried the shots - yet)< havent gotten any luck on that approval yet.
So what happened to sansert, and how do you get oxygen filled through a crappy insurance company? Also, is there another verapamil that is not veramil but the same thing? I am getting hit for 30 bux copay to fill the veramil and not sure if there is a generic or cheaper same thing. How long do I wait till I just give up on verap?
Next course from doc if I dont get better is more preds to kill cycle, continue verap and start lithium.
I have a really good job and cant be stoned all the time...need some advice...
Thanks all
PS...if anyone has a link to a song lyric i posted here a couple years ago "clusterfucked" I could use it since I had a disastrous lapse in my data backup practices and someday hope to put the music on it.
no ice cream, no candy cane
here comes mr. clusterbrain
bang your head and dont complain
alarm clock courtesy of clusterbrain
why you cry from one eye freak?
you must be crazy, must be weak
Thats what they will think and say
if they're seeing you this way
puke up your dinner, crush your brain
see your life go down the drain?
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Zonie
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I love YaBB 1G - SP1!
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Re: what happened to sansert? ANd insurance rambli
« Reply #1 on: Aug 28th, 2003, 6:28am » |
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Sansert has been removed from the mkt due to it's side effects. I used it to interrupt episodes many years ago & I agree with you, it worked beautifully. But I had to quit taking it when my right arm and hand became useless. I could not use the hand without terribly cramping. Went to my GP (who could not find a pulse)and then for dopler tests on circulation. The cardiologist who did thests immediately took me off of the Sansert and said to never take it again. This was long before it was taken off the market, so I am left to assume that many others suffered some pretty remarkable side effects. I had taken it many times before with no side effects. I have been on pred for years and am in the process of tapering off "slowly". Numerous attempts to get off of it have failed in the past. I was also on Verapamil for many years and after my clusters became chronic, a new dr. asked me why I was still taking it as apparently it was not helping. I believe that Verapamil is the Generic (or cheaper) form of Calan. You might ask the druggest for sure. I have been on virtually every med available to us & am currently having the same problem with Cigna covering my O2 that you are. My bro-in-law has been my supplier for years (owned a Medical Equip Co) and he has recently sold his co. I too am just breaking in a new doctor (educating him). He asked me why I needed O2. So by this, I know I'm in for another up hill battle. (But what's our alternative?)
Same problem with ins. and imitrex. My ins. co. (then Intergroup Ins.) would allow me 9 per month (that's what I needed for a week). I was seeing a Headache Specialist at Barrow's Neuro. Institute here in Phoenix, so she uped mg. from 25 to 50mg and had me take 1/2 tablet at a time. This helped (so now I have 1 , but it was still not enough most months. Samples were provided, too. I have used the injections and LOVED them. The nasal spray didn't work well for me, but all things work differently on different people. Since then, my employ. group changed ins. carrier to Cigna and naturally I had to find and educate a new dr. He switched me from imitrex to cafergot (as needed) and a daily dose of Amitriptylen (Elavil/anti depressant) for chronic pain. As I said earlier, I am also attempting to get off of the pred and am slowly decreasing it. I have gained in excess of 50 pounds since beginning the pred. and I feel like a blimp.
This has in no way gotten rid of my CH, but the frequency and intensity is "somewhat" better. I have discovered, over many years of these things, that the O2 helps, but be sure to get it started as soon as you feel one coming on. As for where to get it, call you Cigna members services (on back of you card) and find out who they use for O2 supplier. Then they will need your drs. script for 10 liters per minute. I have a big "J" tank in my bedroom and I keep several small "E" tanks to take with me when I leave home.
Something else that I have found to help me, while using the O2, is to get a "COLD" wash cloth (or an ice bag) and use as a compress on the area that hurts. For me that is all around my left eye, down-to and including the ear area and temple. I call it my COLD compress and that's just what it is....a "compress". I really do apply pressure to the area while holding the cold cloth on it. In emergencies I have even wrapped ice cubes in paper towels and applyed it to the area and got some relief. The O2 definately shortens the length of the attack and occasionally will nip it in the bud totally... even to where I don't have to take a cafergot. Tha's not often, but we do appreciate all blessings.
Hopefully this might help a little. I too had a great job, but have been forced into total disability by my CH. I have had them for approx. 12 years and have been on disab. for approx. 6 of those 12 years. I feel that I have aged 30 years in the last 6, from the meds. side effects and sleep deprivation. I do hope this info helps a little and just keep on trying things until something helps. Good Luck and if I can help, you know where to find me.
Connie
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HypnoticFreddy
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Re: what happened to sansert? ANd insurance rambli
« Reply #2 on: Aug 28th, 2003, 9:34am » |
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Last summer during my 4 month cycle, I was prescribed Sansert. If it is illegal, I am not aware of it. Did this recently happen?
I got no relief from it.
Nor is it a drug that makes you "stoned". I believe it is an erotomine-related drug, making it similar in structure to LSD. Perhaps if you overdosed you'd be "stoned"
In my opinion it is not a good preventative.
Immitrex injections are the way to go, and I don't recall feeling "stoned" after that.
I have read about Stadol NS, and that will stone you.
Otherwise, most of the commonly prescribed preventative meds do not stone you. Although it seems there are a lot of drug-intolerant people here. Give em an aspirin and they complain about vertigo, naseua, dizziness, etc.
I guess it's just dependent upon the individual.
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Bob_Johnson
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Re: what happened to sansert? ANd insurance rambli
« Reply #3 on: Aug 28th, 2003, 8:35pm » |
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Worth a try as an abortive. I've had excellent results.
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Olanzapine as an Abortive Agent for Cluster Headache
TD Rozen
Posted May 2002
Headache 2001; 41:813-816
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Objective: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial.
Background: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs.
Methods: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg., and the dose was increased to 10 mg. if there was no pain relief. The dosage was decreased to 2.5 mg. if the 5 mg. dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose.
Results: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80 percent in 4 of 5 patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple-treated attacks. The only adverse event was sleepiness.
Conclusions: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
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Quoting from Ninan T. Mathew, M.D., HANDBOOK OF HEADACHE. [As preventive.]
"For episodic CH, ergotamine 1 mg twice a day is the first choice, followed by verapamil 360 to 480 mg a day. In more resistant cases a combination of ergotamine and verapamil is recommended. Methysergide 2 mg three to four times a day is an effective alternative, especially in younger patients. Methysergide should not be combined with ergotamine. Corticosteroids may be used for short periods to break the cycle of headache or to treat severe exacerbations.
"For chronic CH, the preference is a combination of verapamil and lithium. In more resistant cases of chronic CH, triple therapy using ergotamine, verapamil, and lithium, or using methysergide, verapamil and lithium may be considered.... Careful monitoring of blood levels of lithium...is essential."
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A bit dated re. methysergide but others meds still valid.
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Bob Johnson
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