HELP NEEDED ASAP

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HELP NEEDED ASAP

Post  dcook60 on Fri Jan 09, 2015 9:02 am

i'm a 17-year veteran learner and sometime poster, here.  now i need some ideas and help.  short version of my current sad story is that i need 2 different triptans to get out of bed and to go to work at age 75, and basically, to function at all.  the generic versions of my triptans either do not work at all, or very poorly.  

now that there are generic types of MAXALT AND AMERGE, no doctors are giving samples out freely anymore.  (for years i begged for these, and they kept me going).  

having tried 3 different generic AMERGE and MAXALT (each) with terrible results, i need the brand names.  no insurance, at least that which i can afford, pays for brands.  (i am fortunate to get MAXALT free from the merck company, but they give me only 1/3 the amount i need, since i take one or the other drug daily). i do need brand-name AMERGE, and buying it outright would take my entire income.  so i guess my question is:

is anyone else in this sinking boat?  i've never bought a foreign drug or illegal one, in my life and don't want to start now.  but i can't think of any way to get the AMERGE i do desperately need.  drive to canada in the dead of winter with my prescription in hand?  this isn't really possible with my head the way it is behaving now. plus if i take time off work, i have only my pathetic social security income.

anyone with an idea is welcome to post here or PM me.  i would be most grateful, as my life seems to be sliding down fast.  thanks so much, dianne
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Re: HELP NEEDED ASAP

Post  Kem10 on Fri Jan 09, 2015 1:38 pm

How I wish there was something I could do to help you Dianne. I can only get the generic Imitrex (Sumitriptin). I can and will pray that you find help soon though.
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Re: HELP NEEDED ASAP

Post  tortoisegirl on Fri Jan 09, 2015 5:40 pm

(1)  I assume you've tried every Triptan, and have tried larger doses of the inferior generics?  Maybe there is another one that would be helpful.  The max dose is also often two of the highest dose pills a day (such as 200mg/day of Sumatriptan, when they only go up to 100mg pills).  Could you also get free Triptans from another company besides the one who makes Maxalt, or is that a disqualifier? I too only have insurance which covers generics when a brand is available (or you pay the price difference). I have been using generic Naratriptan (Amerge) lately.

(2) Besides driving to Canada, there are apparently some legit online pharmacies (ie. ones that take prescriptions and have pharmacists who dispense the same meds you'd get in a pharmacy here, although many don't actually come from Canada).  I am currently researching that, as I want to try a migraine preventative that is not FDA approved (Flunarizine).  Apparently there are many that appear to be legit that actually aren't, but there are some online resources to help you find legit ones.  The savings amount varies widely though.

(3) Another idea is to try a pain specialist to see if they have any ideas.  Although they are really decreasing opiate prescribing, if they help you, that could be another option.  I wouldn't be able to work full time if not for the Methadone I'm on.  They may also have medication ideas as an alternative to Triptans, such as ergots or NSAIDs (Diclofenac has been helpful for me).  I hope you find a solution!  Best wishes.

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thank you, tortoisegirl and kem!

Post  dcook60 on Sat Jan 10, 2015 10:01 am

oh, if only imitrex would work!  in my 46-yr history with this pain, until imitrex was invented i was down and out way too often (but not daily as i am now, without drugs).  i believe i was "the first one in line" for imitrex, about 1991 and it did work for 4 years.  then it quit on me.  the pills never did work, only the shots.

yes, i've tried all seven triptans, and only the two i mentioned work.  yesterday i found out that the generic amerge i've been using with pretty good results, has changed hands and the new company has tweaked the "recipe".  so now it makes me terribly worse.

i just wasted $70 on 3 pills taken (bought 18).  and now there are no more companies making amerge to try.  generic companies have some kind of scammy thing going, where they make deals with other generic companies.  "if you'll not make this one anymore, we'll let you make this other one".  i don't get it........this is what 2 pharmacists have told me.  there are only 4 companies making generic amerge, and i've tried all those.

i have tried preventives and they don't prevent anything.  every one of us has a unique situation.  mine seems to stem from a chiari malformation and other head and sinus abnormal anatomy.  maybe.  

tortoisegirl, i will find out if it's safe to take a double dose of the inferior generics, as the initial dose.  i really doubt it, though.  very often i need a double dose of the REAL THINGS, but these are taken 2 hours apart.  

i really do appreciate all the suggestions.  opiates nor nsaids nor ergots do anything for me, so i am really stuck.  will keep posting if/when i find help.  thanks again, everyone, for reading.  dianne
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Re: HELP NEEDED ASAP

Post  Migrainegirl on Sat Jan 10, 2015 4:57 pm

This is really a problem.  My insurance company will no longer cover Frova, so now I get to try triptan roulette to see if I can find anything else that half way works. Although my pharmacist put in some sort of coupon that will let me buy the Frova for $100, so that is my backup.

Sorry if you have already addressed this, but any luck with Botox or Cefaly?  I know the medication preventatives just don't work.

At 75 I'm sure you qualify for Medicare. Will that cover anything?
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Re: HELP NEEDED ASAP

Post  dcook60 on Sat Jan 10, 2015 5:13 pm

i've been on medicare since i was 62. the drug benefit (medicare D) as i recall, kicked in when i was over 65. before that, there was no drug help for anyone, but the drugs were not so outrageously expensive then.

good fortune to you, too, migrainegirl. i haven't tried cefaly because it helps so very few. botox......5 times, without much help. eeeeeeeeek. i found a company in canada with $6 per pill amerge. it is made in TURKEY. but supposedly the company is still glaxo smith-kline. i don't know whether to trust this or not. to get this price i have to buy 36 pills for over $200. more research necessary.

thanks for replies, dianne
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Re: HELP NEEDED ASAP

Post  lorente on Sun Jan 11, 2015 7:48 pm

Re: Cefaly. The studies indicate that only half of the people in the initial study were helped by Cefaly. That is true. However, if you read the study closely, you will see that the half for whom it did not work did not use it correctly; they did not use it every day, as recommended.

It wouldn't hurt to try it. I've heard you can return it for a refund if it doesn't work for you. But you do need to use it every day. (On days when I have had unrelenting migraine, I've used it twice.) I have been using Cefaly daily since March 2014, and I've had to take triptans only four times since then. It's changed my life, but then, my migraines are primarily of the trigeminal nerve type, which Cefaly is especially good for. I am not familiar with chiari, so I can't speak to that and Cefaly.

I would certainly look into online Canadian pharmacies. I personally have purchased drugs in Mexico, but they were OTC there, so my experience with this is quite limited. I wish you all the best.

eta: should have been March 2014, not 2013


Last edited by lorente on Sun Feb 08, 2015 8:47 pm; edited 1 time in total

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Re: HELP NEEDED ASAP

Post  WitsEnd on Sun Jan 25, 2015 4:15 pm

Dianne, just logged in here for the first time in a while and saw this thread. How are you getting on?

Being in the UK, I have no advice I'm afraid. What a shitty situation for you to be in Sad
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Re: HELP NEEDED ASAP

Post  dcook60 on Mon Jan 26, 2015 5:26 pm

thanks for asking; i'm surviving! (yep, the whole thing is shitty all right)  

i found a new physical therapy method that seems to be helping my general and also head pain, at least a little.  also, my month on the ketogenic/caveman/paleo diet is HARD, but also maybe helping.  when one does more than one new thing at the same time, it's not possible to sort out what helps or hinders.  

as for the drugs......still waiting for the amerge ordered from canada to arrive.  they told me 3 weeks.  it's been 10 days.  it's made in turkey and shipped from mauritius, which is god-knows-where. suspicious, my children and i think.  

meanwhile, i am using the few maxalts the company gives me for free.  my very kind neuro is trying to go to bat for me with the company rep he knows; to get me what my primary doctor prescribes, which is 30/month.  they give me 12, and i'm grateful for those.  otherwise, i'd have nothing.

will keep everyone posted on progress with this. dianne
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Re: HELP NEEDED ASAP

Post  lorente on Fri Jan 30, 2015 12:28 am

Dianne, My insurance company won't cover my Maxalt either, and the generic works only about half the time. Someone told me recently that sometimes your insurance company will make an exception if your doctor calls them to let them know you need the brand name drug because the generic doesn't work for you. I'm going to talk to my doctor about that the next time I go.

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Re: HELP NEEDED ASAP

Post  Migrainegirl on Sat Feb 14, 2015 1:07 pm

Diane, good news the Maxalt is actually working much better for me than the Frova. So not only is it much cheaper ($5/ prescription compared to over $100), but it does a better job. For once the insurance restrictions worked out for the better. Yeah!
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Re: HELP NEEDED ASAP

Post  WitsEnd on Sun Mar 08, 2015 4:45 pm

Hope you're doing ok, Dianne.
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Re: HELP NEEDED ASAP

Post  averysweet on Mon Nov 09, 2015 7:00 am

HELP Help!!!!! I just started posting here last night. I have read a lot of posts already and unfortunately can relate to a lot of the issues. I've had migraine for over 40 years and they have gotten more debilitating and my tolerance has gotten lower . Tried disability but denied 3 times . I had a lawyer but they wouldn't focus on the migraines only the depression. Did the whole repeal thing. That's a bridge burned. Doctors that have treated me badly or "didn't know what to do with " me!! I have a PCP right now that used to prescribed 3 triptans a month but now refers everything to Specialists, the Neuro Doc us a quack!! He prescribes Cambia to everyone. It's an NSAID with Aspertame.i have ulcer can't take it and Wouldn't !!!!! I have Developed Chronic Migraine. No one seems to know anything!!! I tried to commit suicide 3 months ago because no one "gets" it. I''m in that boat again. I have developed really bad head pain when I go to sleep and wake up. It doesn't matter how long I have slept. I don't sleep much.! Don't want to sleep, because I wake up with such bad pain. I was taking a Triptan every morning but now I can't get any. PCP won't prescribe and Neuro Doc thinks muscle relaxer or the Cambia should work. I'm extremely frustrated. I need some kind of advocate!!!!

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Re: HELP NEEDED ASAP

Post  Migrainegirl on Mon Nov 09, 2015 8:30 pm

Avery

So sorry to hear about this. Unfortunately finding the right Doctor is key. I am not sure what country you are in. Can you go to a new PCP or nuero?

Have you tried Botox or Cefaly? These seem to work for many people for whom the meds did not work. Do you know what your triggers are? Or is it just all the time?
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Re: HELP NEEDED ASAP

Post  dcook60 on Sat Nov 14, 2015 10:57 am

i'm the one who started this thread back in january. i'm still fighting to get enough triptans. it's an ongoing struggle, and when one feels this bad, it seems like climbing everest to keep fighting.

avery, i cannot imagine what a holy mess you find yourself in. we here all feel so much compassion for you, for many of us also have 40-50 plus years of pain, and now have chronic daily migraine. for many, NSAIDS do nothing, and neither does anything else besides triptans. morphine, dilaudid, and myriad other opiates, both real and synthetic, do not touch this pain for some of us.

it seems you have idiots or "cold" people for doctors. if you were in the U.S. you might be able to get more help. please respond so someone from your country can attempt to chime in with help.

my update is that i will have to start paying full price for brand-name AMERGE, the first of the year. unless i can find a canadian drug that works, i'm very very screwed, as the 27 amerge i need would cost more than my income.

2015 has been tolerable because i was able to get maxalts free from the company via my neuro, and my PCP advocated for me to get more than the allotted 9 amerge per month. i always feel like i'm in between a rock and a hard place. i have a life, when i have enough triptans. without them, no way.

btw, i did botox several times, and it seemed to help a little at first, but then stopped working. it is definitely worth a try, but only with someone who has LOTS of experience in where to put the injections.

dianne, age 75, working 30 hours/week by the grace of god and the triptans.........

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Re: HELP NEEDED ASAP

Post  Migrainegirl on Sat Nov 14, 2015 8:11 pm

I think we spend too much time trying to argue with insurance companies about what we need.

If you can't get the right drugs that work for you, you will obviously be severely disabled. Dont suffer in silence.
Check into a hospital and refuse to leave until the migraine is gone. When the insurance company figures out how much it is costing them not to supply you with sufficient Triptan's, they may magically change their minds.
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