Losing hope
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Kem10
Jewishmother
Mule Kick
Crazyhandlz
8 posters
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Losing hope
Diagnosed with migraines in 2000. I was medically retired from the Air Force in 2007 with 100% disability for migraines, and am a VA patient. I've just about taken every medication out there. I am currently taking propranolol, imipramine, topiramate, divalproex, Imitrex injections and Toradol injections for migraines. I'm also taking about five other medications ie; Zoloft for depression. oxicodone for pain. Blood pressure medication.
I get around two migraine a week. Although I have a headache just about everyday. I am wondering if anyone has tried any alternative remedies for migraines. My wife has gotten rid of all the chemicals in our home. We have tried diet changes. Chiropractic adjustments. Nothing has worked. I even snorted cayanne pepper once. That was a mistake. My quality of life is just about gone. I get rebound headaches from my medication. Sometimes I'll recover from an intense migraine where I'm in bed for 4 days, but it's a week before I'm able to recover from all the Meds. Then the cycle starts over again. I have horrible vomiting when I have a migraine. Has anyone had any lessening of intensity or frequency of their migraines with medication, alternative or pharmecutical? I'm willing to try anything.
Update since March. My neurologist approved A series of Botox injections. The Botox did not shorten the frequency or intensity. Again any suggestions???
I get around two migraine a week. Although I have a headache just about everyday. I am wondering if anyone has tried any alternative remedies for migraines. My wife has gotten rid of all the chemicals in our home. We have tried diet changes. Chiropractic adjustments. Nothing has worked. I even snorted cayanne pepper once. That was a mistake. My quality of life is just about gone. I get rebound headaches from my medication. Sometimes I'll recover from an intense migraine where I'm in bed for 4 days, but it's a week before I'm able to recover from all the Meds. Then the cycle starts over again. I have horrible vomiting when I have a migraine. Has anyone had any lessening of intensity or frequency of their migraines with medication, alternative or pharmecutical? I'm willing to try anything.
Update since March. My neurologist approved A series of Botox injections. The Botox did not shorten the frequency or intensity. Again any suggestions???
Crazyhandlz- Posts : 2
Join date : 2013-03-03
Re: Losing hope
Hi Crazyhandlz,
I am also an Air Force veteran, and get my meds from the VA. My county Veterans Service Officer is helping me to apply for disability (I have an extremely slim chance of getting it, though).
I was diagnosed (at the Boise VAMC) with migraines in 2003, though I probably have had them since childhood.
While a 2 month trial of Verapamil (a calcium channel blocker) did reduce the intensity of the headaches (by 2 to 3 points on the 1 to 10 pain scale); it also, unfortunately, increased their frequency from 2 to 3 times per month to 2 to 3 times per week. Both results seem to be permanent. It also raised my blood pressure.
Ibuprofen, prescribed for Cervical Spondylosis, gave me rebound headaches; and did nothing to reduce the pain in my neck. The only pain that Ibuprofen has ever reduced, for me, were the rebound headaches, that it caused.
I used to get Zomig-Zmt (Zolmatriptan orally disintegrating tablets), but it has been removed from the formulary. I now get generic Sumatriptan tablets.
My other rescue med is the generic for Fioricet (APAP 325 / Butalbital 50 / Caffeine 40 mg tablets).
Nortriptyline did not work as a prophylactic for me. I am currently taking Propranolol Hcl 60 mg SA cap; one capsule per day for migraine prophylaxis (and to reduce my blood pressure), but it is not working for either.
For Depression and Anxiety, I have recently been started on Citalopram and on Bupropion.
I am also an Air Force veteran, and get my meds from the VA. My county Veterans Service Officer is helping me to apply for disability (I have an extremely slim chance of getting it, though).
I was diagnosed (at the Boise VAMC) with migraines in 2003, though I probably have had them since childhood.
While a 2 month trial of Verapamil (a calcium channel blocker) did reduce the intensity of the headaches (by 2 to 3 points on the 1 to 10 pain scale); it also, unfortunately, increased their frequency from 2 to 3 times per month to 2 to 3 times per week. Both results seem to be permanent. It also raised my blood pressure.
Ibuprofen, prescribed for Cervical Spondylosis, gave me rebound headaches; and did nothing to reduce the pain in my neck. The only pain that Ibuprofen has ever reduced, for me, were the rebound headaches, that it caused.
I used to get Zomig-Zmt (Zolmatriptan orally disintegrating tablets), but it has been removed from the formulary. I now get generic Sumatriptan tablets.
My other rescue med is the generic for Fioricet (APAP 325 / Butalbital 50 / Caffeine 40 mg tablets).
Nortriptyline did not work as a prophylactic for me. I am currently taking Propranolol Hcl 60 mg SA cap; one capsule per day for migraine prophylaxis (and to reduce my blood pressure), but it is not working for either.
For Depression and Anxiety, I have recently been started on Citalopram and on Bupropion.
Last edited by Mule Kick on Thu Jan 23, 2014 5:41 pm; edited 1 time in total
Mule Kick- Posts : 223
Join date : 2009-12-04
Location : Oregon High Desert
Re: Losing hope
I kind of think of my migraines as a separate entity in my brain that I battle with............and that even if I find a drug that may help with one of my migraine symptoms that only means that the migraine will find another way to assert itself with a different symptom. Like playing chess with it I guess.......I make a move and gain a little "headway" and then it makes a different move to challenge me. That said -
Have you ever sat down with a pharmacologist or someone who has training in drug interactions and had them review all your meds to make sure that they are not causing other problems? My primary care doc has a degree in pharmacology and he is very good when it comes to the meds I take and their interactions and side effects - it is a balancing act and first and foremost I want my docs to "first do no harm" in helping me cope with my migraines..... I just had an issue with one of my meds when I discovered that my eating grapefruit everday was making the med toxic in my system. So no more grapefruit and I have discontinued that med to give my kidneys a chance to recover.
Have you ever sat down with a pharmacologist or someone who has training in drug interactions and had them review all your meds to make sure that they are not causing other problems? My primary care doc has a degree in pharmacology and he is very good when it comes to the meds I take and their interactions and side effects - it is a balancing act and first and foremost I want my docs to "first do no harm" in helping me cope with my migraines..... I just had an issue with one of my meds when I discovered that my eating grapefruit everday was making the med toxic in my system. So no more grapefruit and I have discontinued that med to give my kidneys a chance to recover.
Jewishmother- Posts : 296
Join date : 2009-12-09
Location : United States
Re: Losing hope
Jewishmother, that is exactly how I see my migraines, like some kind of creature with a mind of it's own that lurks in my head somewhere just waiting to strike. If I manage to deal with it in some way it figures out another way to get to me. For those without migraines this may sound silly but I'll bet most migraine suffers understand.
Kem10- Posts : 229
Join date : 2013-10-27
Re: Losing hope
Yeah, like when I was on the trial of Verapamil (one of the meds with which grapefruit is forbidden); the migraine monster decided that if I was going to lower the pain level, then I had to have more days of headaches to equal out the same total amount of pain per month. Also, at the start of the Verapamil trial I had low blood pressure, and at the end of the two month trial I had borderline high blood pressure.
Mule Kick- Posts : 223
Join date : 2009-12-04
Location : Oregon High Desert
Re: Losing hope
I have not had any success with any preventative meds - absolutely none. Not a single one of them reduced the frequency or intensity of my migraines, and I tried every class inluding anti depressant, anti seizure, blood pressure meds, etc. You may realize this already but you seem to be on quite a few medications. You should take a look at each one and ask yourself if it is REALLY helping you or not. I have taken meds for years, before coming to the realization that they never helped me and never would. It just takes awhile sometimes because you want to have hope that it's helping you. But, on the other hand, you don't need to deal with those side effects on top of the migraines you already have.
The only meds I take for migraines now are triptans - Imitrex currently since it is cheapest, plus one Ibuprofen at the same time. I get them daily, and I take my Imitrex daily.
I know you said you tried changing your diet, but since you are asking what has helped us, I discovered that artificial food coloring made the pain and nausea of my migraines about 90% worse. Red #40, yellow #5, that sort of thing. Since cutting them out, I still get my migraines daily but the pain is so much easier to deal with plus I have reduced irritability and anger, no more feeling hot all the time, etc. Just something to think about trying if you haven't already. I will point out that most of your medications likely contain artificial food colors, and those are no exception to what the ingredients can do in your body.
The only meds I take for migraines now are triptans - Imitrex currently since it is cheapest, plus one Ibuprofen at the same time. I get them daily, and I take my Imitrex daily.
I know you said you tried changing your diet, but since you are asking what has helped us, I discovered that artificial food coloring made the pain and nausea of my migraines about 90% worse. Red #40, yellow #5, that sort of thing. Since cutting them out, I still get my migraines daily but the pain is so much easier to deal with plus I have reduced irritability and anger, no more feeling hot all the time, etc. Just something to think about trying if you haven't already. I will point out that most of your medications likely contain artificial food colors, and those are no exception to what the ingredients can do in your body.
Seaine- Posts : 331
Join date : 2012-07-20
Age : 38
Location : Florida, USA
Re: Losing hope
please do not lose all hope. there are always more things to try. my only advice, to add to the good ideas others have answered, is to be very very wary of those who promise you success. their potions or methods may help some folks, but certainly not all, as you well know.
re: botox. if you tried it only once, you might consider giving it at least one more trial. when i tried it about 14 years ago, before it was approved as a treatment for migraine, no neuro in my area had much experience giving the shots.
it did not help then, but i had it 2 months ago by a new neuro who DOES have lots of experience, and i have to say it cut down my daily triptan use (maxalt and amerge, alternated). it did not dramatically cure me, of course, but it helped enough that i will continue to get the shots every 3 months. like seaine, the only thing that ever helped me one iota is the triptans, and believe me, i've tried most everything out there.
i've read that sometimes it takes 2 or 3 tries for the botox to start to work. so perhaps you could try again if you've had it only once.
another thing to add to seaine's post is to be obsessively aware of food chemicals, particularly MSG in its many (50 or so) disguises. i've found that this, more than any other change in diet, is my key to keeping away the go-to-bed-and-barf kind of pain.
lots of good fortune to you, dianne (45 years of M and still perking along)
re: botox. if you tried it only once, you might consider giving it at least one more trial. when i tried it about 14 years ago, before it was approved as a treatment for migraine, no neuro in my area had much experience giving the shots.
it did not help then, but i had it 2 months ago by a new neuro who DOES have lots of experience, and i have to say it cut down my daily triptan use (maxalt and amerge, alternated). it did not dramatically cure me, of course, but it helped enough that i will continue to get the shots every 3 months. like seaine, the only thing that ever helped me one iota is the triptans, and believe me, i've tried most everything out there.
i've read that sometimes it takes 2 or 3 tries for the botox to start to work. so perhaps you could try again if you've had it only once.
another thing to add to seaine's post is to be obsessively aware of food chemicals, particularly MSG in its many (50 or so) disguises. i've found that this, more than any other change in diet, is my key to keeping away the go-to-bed-and-barf kind of pain.
lots of good fortune to you, dianne (45 years of M and still perking along)
Last edited by dcook60 on Thu Jan 23, 2014 5:48 pm; edited 1 time in total (Reason for editing : addition)
dcook60- Posts : 501
Join date : 2009-12-03
Location : spokane, WA
Re: Losing hope
Thanks for writing! I do want to first tell you that it is easier for a lot of us to read posts if they are broken up into paragraphs. It can be rough to focus on something that is not broken up into smaller parts.
florri- Posts : 1
Join date : 2014-01-28
Re: Losing hope
What helped me most when I first came to this forum was going back and studying as many posts as possible as well as taking from older posts the themes, which were more close to my own symptoms.
Try in the beginning to read all this page and read posts slowly one by one.
You do not have to do it all at once, but you will find that after a while much of other people's experience make more and more sense.
It seems that you are now taking so many medications that it is difficult to tell what works, and what does not, plus your issues with the re-bounds which, might affect most of us if we are taking any medication over a longer period of time.
Jewish mother is right, you need to have a good neurologists familiar with pharmacology and migraine (M) and go over with him/her everything you take.
It might be best to have a fresh start in order to see how each medication works (or not) for you.
MY wise first neuro said that in his experience, if a medication, or preventative does not work after 3 month, it will never work, so it is pointless taking it any more. YOu need to give it up, and start with something else instead.
If you want to break the re-bound situation you need a complete break from the medicine in question, because the method you use at present is just causing you much misery and gives poor results, obviously.
You might need to try something different which is less likely to give you re-bounds, because once you start having re-bounds with any medication, this will always give you re-bounds, which means it stops being effective for your pain.
It seems that at present you are in a permanent cycle of re-bound and withdrawal, in this state no mediation is very effective, or helping you very much.
IN order to help you with the initial withdrawal from any re-bounds you can ask for a short course of a small dose prednisolone over few days, and this will help to stop the cycle, but prednisolone cannot be use very often.
Do not loose heart, many of us have found in the end, some form of help for M, which are not exactly a cure, but makes this condition more manageable. It might take a while and lots of will power, and perseverance, but you can still have a life, even with M.
Come back here and tell us how you are getting on - we all try to help each other.
Don't give up and keep trying
MIni (UK)
Try in the beginning to read all this page and read posts slowly one by one.
You do not have to do it all at once, but you will find that after a while much of other people's experience make more and more sense.
It seems that you are now taking so many medications that it is difficult to tell what works, and what does not, plus your issues with the re-bounds which, might affect most of us if we are taking any medication over a longer period of time.
Jewish mother is right, you need to have a good neurologists familiar with pharmacology and migraine (M) and go over with him/her everything you take.
It might be best to have a fresh start in order to see how each medication works (or not) for you.
MY wise first neuro said that in his experience, if a medication, or preventative does not work after 3 month, it will never work, so it is pointless taking it any more. YOu need to give it up, and start with something else instead.
If you want to break the re-bound situation you need a complete break from the medicine in question, because the method you use at present is just causing you much misery and gives poor results, obviously.
You might need to try something different which is less likely to give you re-bounds, because once you start having re-bounds with any medication, this will always give you re-bounds, which means it stops being effective for your pain.
It seems that at present you are in a permanent cycle of re-bound and withdrawal, in this state no mediation is very effective, or helping you very much.
IN order to help you with the initial withdrawal from any re-bounds you can ask for a short course of a small dose prednisolone over few days, and this will help to stop the cycle, but prednisolone cannot be use very often.
Do not loose heart, many of us have found in the end, some form of help for M, which are not exactly a cure, but makes this condition more manageable. It might take a while and lots of will power, and perseverance, but you can still have a life, even with M.
Come back here and tell us how you are getting on - we all try to help each other.
Don't give up and keep trying
MIni (UK)
Mini- Posts : 864
Join date : 2010-11-06
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