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Headaches and migraine for 20 years

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Old 05-18-2003, 02:05 PM   #1
Join Date: May 2003
Location: uk
Posts: 3
traymc HB User
Wink Headaches and migraine for 20 years

I have been suffering headaches since the age of 11, over the years they have gone worse. I have had all sorts of tests and like alot of readers, the doctors are sick of signing for prescriptions and seeing me come through the door. I am sick of them myself. Infact I try not to let them rule my life, otherwise I would be in bed all the time resting. I take 100 midrid tablets a month, I am on a prevention which doesnt help called propranolol and I take imigran for the migraine attacks which wont shift. Does anyone else have a similar problem? What ideas do you suggest. Apparently there is no test for hormones linked to headaches which I feel it is. I am at my wits end. Please help

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Old 05-18-2003, 04:59 PM   #2
Join Date: May 2003
Location: Cincinnati, Ohio, USA
Posts: 5
PainfulHeadInOhio HB User


I totally understand your aggravation with the migraine headaches. I have been putting up with them for many years, but lately they have gotten almost unbearable. They usually start from the right side of my lower neck towards the back, and then the pain works its way up to my temple, and I am in misery. They usually happen in the early to late evening times.

I put up with them at least 3 or 4 times a week, and when it gets unbearable, I take extra strength pain relievers, and use my hot water bottle on the back right side of my neck while lying down in a dark room, sometimes with a cold cloth on my forehead. That does help most times. I also drink chamomile, peppermint, and Chai hot herbal teas. All seem to relax me enough to help ease the pain, and sleep. I definitely rather drink those, being that they are herbal, than be taking too much medication for the migraines.

I hope you can get some relief from your pain soon. I totally sympathize with you.


Old 05-19-2003, 12:23 PM   #3
Join Date: May 2003
Posts: 6
terias HB User

Youch! My migraines are definitely hormonal. One quick call to my OB/GYN has me on a new set of BC pills to see if they will help. There is actually a birth control pill specifically for people that get migraines. I think it's called Mirset or something along those lines. My dr didn't have any samples available, so we're trying another pill pack for a few months and we'll discuss other options at my annual appointment in July.

Something to consider if your headaches are hormonal :-) I'm hoping it works for me! I went for a few months skipping the sugar pills at the end of the pack so I would skip my period altogether. That worked well for me, but I'm running out of pills :-) As soon as I started my period again, the week+ long headache and auras were back. Blah.

Old 05-19-2003, 01:40 PM   #4
Join Date: Nov 2000
Location: madison, wi usa
Posts: 968
Karla HB User

I get 8 headaches every day of every week of every month of every year. I suffer from cluster headaches of which I get 8 a day and I suffer from migraines of which I get 4 a month. If you are taking that much midrid than I suspect that you are getting hit almost daily with ha also. There are other preventative medicines out there besides propranolol. I would not give up looking. If your dr. isn't recomending you keep finding and searching for a better preventative you need to find a new neuro. There is relief out there somewhere you just need to find it.

Old 05-19-2003, 01:59 PM   #5
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Join Date: May 2003
Location: memphis, tn usa
Posts: 11
memphisbelle HB User

If you feel like your headaches are hormonal, definitely talk to your ob/gyn. i have hormonal migraines, and have been on mircette, and a host of other birth control pills. now, however, they have more effective methods of delivering the hormones so you don't have peaks in valleys throughout your day. i recently went four months with a migraine -- and had to get an mri (which showed nothing), and put up with a lot of nonsense to get some meds that would work until we could change my hormones. talk to your doctor about the birth control patch and the vaginal ring -- both supply a steady stream of hormones -- and have lower doses of estrogen, which helps keep the risks related with the pill down. the vaginal ring has 15 micrograms per day of estrogen and the patch has 25. mircette has 20 -- so it's in between if the others are not available to you or if you are uncomfortable with them. mircette worked very well for me for about a year -- and i don't know what initiated the change, but it stopped working as well. the difference between mircette and other birth control pills is that it has only two completely hormone free days in a four-week cycle, whereas most pills have seven days -- so two days of worse headaches instead of seven. it made a big difference, and now they even have a generic available so the costs are better. i am personally using the ring, and after getting up at 6:30 every single morning for 7 years to take my pill at the same time, i forget that it is even there. you can't feel it at all -- and don't have to think about it for (depending on which you do) 21 or 28 days. it is a godsend. and it is not at all awkward at other times either.... a general doctor is not going to know as much about hormonal migraines as an ob/gyn -- so definitely go see one. good luck! keep us posted!

Old 05-21-2003, 04:44 PM   #6
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Join Date: Apr 2002
Location: Boston, ma usa
Posts: 27
mudd HB User

Please Please do yourself a favor and buy the book: Heal Your Headache! It saved my life!!!!!!!!!

Old 05-22-2003, 07:11 AM   #7
Join Date: May 2003
Location: uk
Posts: 3
traymc HB User

Thanks everyone for your feedback, it is nice to know you are not the only one suffering that length of time. Doctors get sick of seeing you for the same problems and you feel you are getting on their nerves. If they would do their job properly we wouldnt have to keep asking would we. I will look into those things thanks a bunch. Had a migraine attack today infact spent most of the day in bed. I am on a pill injection at the moment which stops my periods altogether. No such luck in stopping the headaches though. I am at a fix at the moment, the chemist can't get hold of any midrid and they have put me on migralieve, which didnt work at the age of 12 so they are unlikely to work now lol. We live in hope for a cure dont we.
I find using a herbal pillow very comforting for the pain, but you can't walk around with a bean bag round your neck can you especially out on the street haha.
I am also a reiki 2 now which doesnt help the headaches and migraine. I am also doing a crystal healing course at the moment, not found out how to use them yet, but will let you all know. thanks Tracey

Old 05-23-2003, 02:56 PM   #8
Join Date: May 2003
Location: melrose
Posts: 8
piercy30 HB User

Hi, I feel the pain you must be going thru, not only with the migraines, but with the doctor to. I went thru many meds to try and combat the pain and nothing worked until I tried methadone. Now I am not suggesting this med,because I am not a doctor, but I think you can understand where I am coming from. Anyway, talk to your about this and also ask him about elevating your mood with some kind of stimulant, for instance I take adderall xr once a day and never get migraines. Good Luck!

Old 05-23-2003, 04:36 PM   #9
Join Date: May 2003
Location: houston,texas.usa
Posts: 63
blankaflower HB User

piercy30,hi,could you give me info on your methadone treatment for your headaches,i have been reading about it,and i am considering finding a dr(i think i need a pmp for this)?i suffer from a rare migraine that i get daily andi am now housbound most of the time,and i have given up driving,i have been on many meds trying to find something that helps,i currently am taking 10mgs lortab 2 or 3 times a day to try to stave off the horrble pain,i also take axcert and imitrex wich i rotate ,but they dont help,i take reglan for nausea but it makes me more sick,i used to get dhea shots they never helped and i have been on topomax did nothing for me,as well as lots of other meds,i too hate the idea of taking a narcotic,but its the only way i can have a few hours of relief,pls tell me about your therapy,i am so desparate ,i will do anything to end this nighmare,,,

Old 05-28-2003, 07:43 AM   #10
Join Date: May 2003
Posts: 4
kimberly3g HB User

I had horrible headaches, symptoms which sound like yours, and couldn't figure out the cause. Neither could my doctors. I went to a general practioner, I was referred to an ENT (ear/nose/throat) and also to a neurologist. Still no answers. I had a CAT scan and MRI, all normal. Finally I asked the Dr. to put me on amitriptyline b/c I heard it worked for a friend of mine who had chronic tension headahces, with the same symptoms as mine. I started taking 10 mg/night, and now I take 2.5 mg/night and it relieved all of my symptoms. Although it is an anti-depressant at high doses (150 mg/night), at low levels it works to "normalize" neurotransmitters in your head which relieve tension headaches, migraines, or mixed tension and migraine headaches, regardless of the fact that you are NOT depressed. Some people don't want to take it b/c they are scared of anti-depressants and think they only work for those who are depressed, but this is NOT the case. Amitriptyline has worked so well for my headaches that I thought I would share this with you. Good luck.

Old 05-31-2003, 12:22 PM   #11
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Join Date: May 2003
Location: NH
Posts: 10
melly66 HB User

hi traymc!
welcome--i'm new to the crew too!
i am so sorry to hear about your horrible migraines! i can totally feel your pain as i have suffered with them for 4+ years! i have tried everything: anti-depressants, anti-seizure meds, beta-blockers, calcium channel blockers, high blood pressure meds, antihystamines, NSAID's, muscle relaxants, narcotics, triptans...and the list goes on...i've tried more than one kind of each type, as well as a combination of 2 or more of different types, without much luck!! but do not give up hope, because whatever works for you is out there, you just need to find it.
currently i take imipramine 40mg/daily for preventative which is a tricyclic anti-depressant with minimal side effects. for my less severe migraines i take maxal MLT (it dissolves in your mouth--helpful if you are vomiting,or if you have no water) and imitrex 100mg pills. for my excruciating migraines i take Actiq, which is a fentanyl lolipop (again with the vomiting--no need for water either) and i take phenergan to control nausea/vomiting.
i see a wonderful doctor who deals in spinal pain, but she knows her stuff...she has suggested a C2 ganglion block for me. what they do is inject a numbing agent into the c2 ganglion (it is reached through the back of the neck near base of skull).the patient is under an x-ray(i think its called a fluoroscope)so the doctor can see exactly where the needle is going--to reduce riskiness. i have talked to a couple of people who have had this done and all of them had wonderful results--migraine free for 6-8 weeks--some have been migraine free for up to 6 months.
i am planning to have this done, but i have a problem with needles so i am doing some psychological counseling to help with the anxiety of the whole thing.
i will let you know how it turns out.
in the mean time, if you have any questions, please ask.
i hope you find your solution--


Old 06-01-2003, 01:11 AM   #12
Join Date: May 2003
Location: Colorado Springs, CO, USA
Posts: 2
nmkdesign HB User

Well take it from a loooonnngggg time severe migraine and chronic, intractible headache sufferer, I have found great relief from the use of methadone along with Effexor XR at a high does of 450 mg and Serouquel (a relatively new antipsychotic). I am basing my opinion on more than twenty years of trial and error. I too have been on a barage of medications. I have been on every anti-depressant available, including the MAO Inhibitors. I have also been onevery old migraine remedy (cafergot, ergot tablets, midrin, and every new migraine medication (Amerge, Frova, Axert). I have also been on the calcium channels blockers and the beta blockers. I've been on Sansert and DHE 45 injections. I've been on numerous anti-psychotics and it seems like every NSAID available on earth. I've been on many, many anti-epileptic drugs and other mood stabilizers. Needless to say I've been hospitalized at least 18 times for them, 11 times I was hospitalized at an inpatient headache unit at one of the world's foremost authorities on headaches and each one of those stays were from a minimum of 10 days to six weeks. And the best relief I could get was only transient relief with side effects that were almost as
bad as the headaches themselves. At one point I gained 115 lbs and mind you I only weigh 125 normally. In an effort to stay away from narcotics and other addicting drugs, at one time I was prescribed more than 26 medications at the same time. My average monthly Rx bill without insurance cost me $1800.00.

So after more than $500 thousand insurance dollars, the loss of my marriage, the loss of sympathetic friends and the crumble of my career, I am now on Social Security Disability. When I look back, I do remember my doctor giving me a "one time only" pain shot upon each admittance into the hospital. Although no one spoke much of it and it was referred to as DOLOPHINE, which I now
know is one of the brand names for methadone. I also remember my doctor telling me that she uses Dolophine because it is the longest acting narcotic available and she has a lot of patients like myself whose headaches do last for more than the traditional 72 hours.

And while some of the new triptans like Amerge and Frova have longer half-lives than most migraine drugs, they are ungodly expensive if they have to be used chronically. I believe my Amerge was costing me around $21.00 per tablet and I needed to take them daily as preventatives. My monthly bill for methadone only costs about $38.00.

My only caution other than what everyone else has stated regarding its addiction potential is never, ever to stop taking it abruptly. I was concerned about the addiction and since my headaches had been so much better I wanted to see how I would do without it. I suffered two grand-mal seizures and ended up in the hospital. BAD maneuver.

So the only two side effects that I haven't been able to subdue are the frequent disturbing nightmares and the reduced libido. All drugs have side effects, but as a whole I would says methadone has given me my life back, so much so that I think I am ready to start working again. This time for myself. All in all.....I think it can be a miracle drug, as long as it isn't abused. Best, best wishes.

And any help on the nightmares and/or reduced libido would be greatly appreciated. (I am female).

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