re: pain, 24hrs. a day, 7 days a week, always..survey....

I'd like to do a survey...how many are in pain at all times? Except when asleep of course. From what I've read here some have sporadic migraine, some have pain always. I have pain always. Except in my dreams. How about you??

Gigi: I\'m so sorry you suffer like that...

For me, I have 10 days out of each month that I don\'t have a dibilitating migraine...For me, the migraine is always there, it just seems to come down in intensity for those 10 days. I really struggle to deal with this. On a positive note, at least I have 10 days out of the month that I can function on a semi-normal level.

It sucks, and there are many days I find myself thinkng how long can my body take this torture before it gives out. Or if it gets any worse, I\'m not sure I have the strength to deal with it! These migraines put so much stress on our bodies...

Thank God, I found this forum...As I said before, people who don\'t know what we\'re going through can try to be sympathetic (in most cases choose not to though!) but can never truly understand what we have to deal with, and how much strength it takes to make it through the torture of migraines. The most we can do is keep trying to survive the pain. At least in here, we can support eachother, and know that we are not in this battle alone!

Keep hanging in there!

Dawn

What do you mean by pain? Are you talking head pain or pain from M symptoms (extreme sound sensitivity causes pain but it's different) or pain in general (there are a few folks on here that have other medical issues that cause pain as well)?

I have head pain daily...severity level changes but it's always there and it can even be during the night. I also can have pain due to other M symptoms as well, just depends on the day.

Thanks for replying. Yes, finding this forum has been very helpful. As you say people who don't have this can't imagine what we go through each day. When I wake up in the night the pain is there. I have about 3 different types of migraine and headpain. I'm so sorry you have to be on this forum. Did yours begin with sporadic migraine? Mine did. Then changed to at all times. I never would have imagined that life could be like this. I know you feel the same. And others on this forum. I hope to-day is ok for you. G.

Without the topamax I'd be in pain every day. I'd have migraines about 4-5X a week and the other few days I'd be suffering with aches and pains and the "after-shocks" of the m's. I welcome the "after-shocks" compared to the migraine pain itself though! Mine were also sporadic until they turned chronic. Hope you are feeling well today! I'm not doing so bad

Hi All,

I have chronic intractable migraine/ New Daily Persistent headache- this means that I have some level of headache every day. My headaches became chronic at age 17, now 29. I don't think that the pain has dropped below a 7/10 on the paing scale for about 2 years now. About five years ago, my neurologist stopped worrying so much about preventatives and began to treat the pain with long acting pain meds. These help, but do not take the pain away.

I have had two short periods of remission-each lasting about 8-9 months. The first period of remission occured right after I had bilateral radiofrequency to C-2, C-3. During this time, I still had migraines, but I would only have two or three a week and most responded to medication- this was from may 2002-april 2003. The second period of remission occured immediately after the occipital nerve stimulator was implanted. Again, I would have 2-3 headaches a week- most of which responded to medication. I usually had one or two bad ones a month that required either steroids or a trip to my drs office. The second period lasted from June 2004-March 2005, when I broke a lead. The stimulator still helps- it does help with the pain to a degree, but the greatest benefit is that it allows some of the abortive medications and pain medications to work better.

You asked about pain with sleep. I do not know what I would without zanaflex. On occaision, when I have had a particularly bad migraine, my roommate said that I seemed to cry or moan in pain while I was sleeping. The second time she heard this, she was in the room adjacent to mine. Scary. Still, I'll take sleeo over pain any day. So yes, I do have 24/7 head/ migraine pain which we attempt to control with medication and a nerve stimulator.

Pain free days,
sailingm

I am. I have Fibro and Trigeminal Neuralgia in addition to chronic migraines so yeah, 24/7 something is hurting. Mostly it is TN, then Fibro pain and migraines. Lately when I get a migraine in the middle of the night, I have dreams about trying to treat them, usually it's me trying to find my meds or get someone to give me something. Then I wake up to pounding pain. Not the best mornings.

Alli

Oh. sleep as SM mentioned.

When I am so deep in migraine mode the only medication that knocks me out enough for sleep is stadol NS. Beware of this drug, however. It makes me (not everyone, I'm a rare bird) EXTREMELY aggitated! I could KILL someone on this stuff!

It does, however, knock the pain out and knock me out as well. The pain relief lasts longer than the aggitation and drowsiness. It is a very "drowsy-like" narcotic. It is THE ONLY thing that will knock out and ABORT (yes...abort fully) a migraine that would have lasted 3-5 days. I take one or two sprays of it and the migraine is gone, partially because I pass out and get restfull sleep and probably partially because it takes the pain away and I no longer tense every muscle/my b.p drops/ect.

I bring this up because I know that Dawn, you are going in for demerol treatments. I do not know if you have tried stadol yet and I think stadol is a tad weaker but still much stronger than most prescription narcotics and may be worth a shot because it will be much easier as it is an at-home med.

Also, Stadol NS is not easy to get a prescription for as I understand it. I have a great doctor who is fanstastically understanding and who trusts me very much as I am 100% honest with the office. I have never done anything without first consulting them so when I had first brought it up her exact words to me were, "We have never prescribed a patient Stadol before. We have given our patients Stadol that have come from different offices and were already being prescribed it as their treatment routine, however we feel it is a dangerously addictive medication so we stay far far away from it. However, you are the most difficult case in our office and every time I see you it seems you are deteriorating so I am willing to give you multiple things to try. If you would like to still give it a try after knowing the risks, I will write you the script." I said yes and she of course said she would like to monitor my useage of the medication to assure I will not have a problem with dependence or addiction.

Do not ever let a doctor just throw this medication at you. The reason I say this is because a long time ago dr's and pharmacutical companies held the belief that this medication was NOT addictive, however many people (depending on their personalities and other factors) do indeed get addicted.

A standard script for a first time user is 2 vials a month. I only use 1 vial a month but I also get many fioricet w/ codeine to take before using stadol. The 1 vial is perfect for me. Once you have built up a tolerance or if stadol is the only med that works for you, obviously adjustments can be made. Again, hope this helps you all. If you ever have questions you can PM me, or I'm sure Auntie Bubbs or Rachel can help you out as well.
LG

Gigi, GL has some good info. She's covered all the bases with Stadol NS. I'm on this med as well. I use one vial a month as well, but honestly, I should be on 2 vials. My dr. just won't write it LOL. But 1 vial doesn't last me a month, it lasts 2 to 3 weeks. I take triptans as well, but they dont work on anything higher than a level 7 migraine.

I have some form of headache pain every day. They aren't always migraines, but they are always headaches, sometimes very bad ones. I take topomax daily. If I didn't, the daily headaches would be daily migraines - they used to be before I was on topomax. I still get migraines at least 3 or 4 times a week - it used to be less often, but I've been in a bad migraine cycle for the last month, maybe it's the weather affecting me, I'm not sure.
Topomax has worked wondered for making the migraines tolerable, though, and giving me back a quality of life. I am one of the few people who did not have major problems with side effects. I've never had a real problem with any side effects of any meds, knock on wood, though I didn't like the heartburn-like side effects of zomig.

To go back to what LG said though, I'd use stadol over demerol, honestly, Demerol scares the bejesus out of me. A good friend of mine's mom used to always have to go to the ER for her migraines, and they'd give her demerol. It basically got to where nothing else worked for her but demerol, which she could only get at the ER. She was in the ER like every other week - a very expensive thing to do, not to mention, how frustrating to spend half your time sitting there waiting for treatment in the ER.

Gia:

I get severe aggitation when I get my injections of demerol twice a month. I get the same effect as you do on your meds. I literally sleep for 21-23 hours straight, then I am in a fog of confusion the day after, then the second day post injection, look out, cuz hyde has escaped and is on the rampage, and Dr. Jekyl has no control over him at all LOL! Sorry, but that's the way I feel, and that is actually down playing it.

My husband actually went and bought me a professional boxing bag so I could take my aggression out on that instead of him...That has done wonders for me! It is terrifying to feel like you have absolutely no control over your emotional state. But when I feel like I'm losing it, I go a couple rounds with the boxing bag. It's a win-win...My husband doesn't get yelled at for stupid stuff, I get a workout from it. In the end I feel much better.

But, demerol is the ONLY treatment that works, so I gotta roll with the punches....literally

Dawn

Ihurt al lthe time somewhere as I have Fibro and IBS too.
Wake with belly ache most mornings but it usually ebbs during the day.
Lot of leg ache and neck and shoulder pains.

Head wise I have constant pain, myofascial they tell me.
It is low grade but kicks in a couple of times a day, usually 4-7pm is worst.

Migraines every 3/4 days and they last 3 days.

Cant imagine what not being in pain can be like.
Been so long now.

My head hurts 24/7/365. It's not a question if I have a headache, it's how bad is it.

My PCP is ordering a new round of Physical Therapy. I hope something comes of it.

Dawn wrote:Gia:

I get severe aggitation when I get my injections of demerol twice a month. I get the same effect as you do on your meds. I literally sleep for 21-23 hours straight, then I am in a fog of confusion the day after, then the second day post injection, look out, cuz hyde has escaped and is on the rampage, and Dr. Jekyl has no control over him at all LOL! Sorry, but that's the way I feel, and that is actually down playing it.

My husband actually went and bought me a professional boxing bag so I could take my aggression out on that instead of him...That has done wonders for me! It is terrifying to feel like you have absolutely no control over your emotional state. But when I feel like I'm losing it, I go a couple rounds with the boxing bag. It's a win-win...My husband doesn't get yelled at for stupid stuff, I get a workout from it. In the end I feel much better.

But, demerol is the ONLY treatment that works, so I gotta roll with the punches....literally

Dawn

Aww Dawn, I'm sorry. Well, I'm glad you have something that does work for you and I hope it continues to work! Thanks for the tip about the boxing gloves but fortunately I am only angry while I am on the meds, not afterwards...unfortunately while I am on them I can't do much of anything in a coordinated matter. At least if I went to punch something, I'd probably miss I do sleep and get extremely tired after the stadol so I'm with you there. Glad to know I'm not the only one and someone else has similar side effects! Thanks for sharing that with me

Aw, Dan, I'm sorry. I hope something good comes of the physical therapy.

Like Dan, mine are 24/7/365 too. Changing in severity and bouncing around to different parts of my head. Most of my migraines begin on my right side, however. The severity is related and very often accompanied by neck, shoulder and upper back pain.

Becky

I have had some level of migraine head pain constantly for many years and last year there was a further deterioration. Prior to this I had increasingly frequent migraine episodes. The level of the head pain varies as does the amount/severity of other symptoms. Naturally, my ability to function directly relates to this. As it happens I've had a couple of really good days just now and have made the most of the respite. Perhaps the Topiramate I've started is beginning to work. Incapacitating migraines last 2 to 3 days with gaps of 3 to 5 days, if I'm lucky. The less debilitating stuff in between is still a significant impairment though. As my migraines are established while I sleep, I don't have any acute or rescue medication that works and just wait the bad ones out.

John

hi on average i have 5 days a week with head pain, ususally 2 days of theses are bad enough to stop me doing what i needed to do and i have to lye down and wait for meds to kick in, and the other 3 days it is irrating, with small peaks of horrible, and then i have an odd good day and then back to pain again, it has been this way for a year now, b4 that i could have 4/5 days without head pain, and going back 5/6 years ago i could have 2 weeks between head pain, ahh those were the days!

I have some level of head pain every day. I am 50 years old. In my teens and early twenties I would only have a couple a month usually for a day. As I got older they became more frequent. ABout 5 years ago they turned into a chronic daily headache.

I have tried so many preventatives over the years, inderal, botox, topamax, depakote, namenda...those are the ones I remember off the top of my head (I should write down a list). Triptans ans DHE are ineffective.

I have ended up using vicoprofen (hydrocodone with ibupfoen) and Toradol in jections (though I can only take those 4 times a months). I also take zofran for nausea.

6 Months ago i hurt my back. My daily allotment of vicoprofen was significantly increased. This increase has really improved my quality of life. I go through the day at a 2/3 pain scale rather than a 5/6.

Even with the back pain I have taken on projects I've avoided for 4 years. I finally have the guest room in our new decorated...three coats of paint and all. Without the severity of the head pain I can actually do things.

I'm seeing a new neuro on the 22nd. SInce I've had such horrible reactions to preventatives, I hoping, that he once he gets to know me and develops a trust, that we can take this on from purely a pain management standpoint.

Oh, and a year ago I did a three month drug "holiday" to rule out MOH (medication overuse headache).

About once a year I will take Stadol if I have an important event I MUST attend. Stadol wipes out the headache quite effectively, but I get a tremendous hangover for it the next day. I will try to have some on hand for the the day of my son's wedding. Don't care what I feel like the next day, I just want to get the through the wedding.

Charlotte

when my son was a teenager, got migraines and would get agitated, I had him take his baseball bat to his mattress. It was a great stress reliever for him.

One of my better ideas as a parent. He thought I was crazy the first time I suggested it but after that... he's go beat up the mattress and then he's be ok.

Alli

I am just like HeelerLady,,,, i copied and pasted her reply below, ditto!


What do you mean by pain? Are you talking head pain or pain from M symptoms (extreme sound sensitivity causes pain but it's different) or pain in general (there are a few folks on here that have other medical issues that cause pain as well)?

I have head pain daily...severity level changes but it's always there and it can even be during the night. I also can have pain due to other M symptoms as well, just depends on the day.

Each and every day since 1984 (daily began during pregnancy). Level varies but never, never leaves (like the hotel california). Episodic, though frequent prior to that for close to 50 (yup) years. When I was a very, very little girl- and when no one know anything about migraine except to think I was neurotic/crazy/ faking or take your pick- life was hell. It still is at times, but at least there is some understanding, particularly from my husband who has never had a migraine (and very few headaches) in his life.

But I still have hope. I still try new things including supplements and other therapies. There's NO proof that the toxic drugs given to us by our MD's are more effective (though I do take some abortives and spend a lot of time in bed and in the dark clutching an ice-pack.). As an RN we took an entire course in understanding studies and thank god for statistics- well sort of. I read the studies critically and pay attention to the "fine print". And sometimes I just take a leap of faith- what can you do?

What's so weird is that other than that, I'm very healthy. Perfect BP, cholesterol etc. Weight is fine- never overweight (I weigh what I did in high school). I eat very well (when I can get anything down) and now that the cymbalta and all those other drugs of that nature (I still take abortives- sigh) have finally gotten out of my system- I swear it took at least a year for my body and mind to recover- I am no longer depressed- just very sad at times. (Getting off cymbalta was the hardest thing I've done in my life btw, despite the fact that it made the migraines much, much worse.)

Love, Anna

As Richard says- this IS my life now - but I'm still willing to try to make it better.

Hi Anna: You said something that has really struck me. You said that this IS my life now....Yes, you're right. Fighting it makes things worse I think. I've been through many phases...denial, why am I being punished, I must be a horrible person, do NOT let anyone see me, the universe hates me.....you get the picture? I bet you do. You mentioned you're a nurse. You can't possibly be working through this? Oh, and, how did you meet your husband anr marry through all of this?? (I am unable to leave the house due to extreme daily headaches.) Hope to-day is ok for you. Gail

why am I being punished, I must be a horrible person,

I didn't go through this with my M's but went through this phase for several years after my son was born handicapped. It finally lifted when I became ANGRY.

My sister is very religious but she finally convinced me I wasn't being punished. I even agreed to have her minister come over and counsel me. I was trying to make the leap of faith. The minister said "God will not punish, but he will disciple" Hunh???

That was a turning point that solidified my agnostic views. I did not want to put my faith in a being who would take a innocent child and use it to "discipline" me.

Now when I read the Bible, I read the parts in red, the parts directly attributed to Jesus and try to base my dealings with humanity on those. To be caring and compassionate. The parts in red don't preach intolerance and injustice, nothing about homosexuality being a sin, nothing about women being chattel. Just how to care for one another.

Sorry, went off topic. And I also apologize if I've offended.

I'll give you 2 replies.

1) I have migraine attacks that cause strong throbbing pain in the head accompanied by strong nausea, dizziness, weakness and hypersensitivity to lights/smell 5/8 times a month.
In winter I can drop to 3 attacks a month while in spring I can hit even 15 attacks a month.

2) I have migraine symptoms daily. Daily, I get numbness/dizziness/nausea/tinnitus/stuffed nose etc... that last only a few minutes. Each time I wonder if they are announcing an attack or if I get away with it.
Anyway, every single day my body has something wrong (and sometimes scary) for a few minutes and that's connected to migraine....

Bye

i too have intractable migraines and daily chronic headaches. during the year i put in my diary any days that are pain free. last year i had 3! i just had 2 very low level days, nearly pain free. now i will probably get socked with a bad episode. after we switched to a different mattress (you've seen the ads most likely), i hardly ever wake up in the night in pain. it is there every morning but i am sleeping deeper so i do not wake up fully, thus am able to" sleep " during the night. mornings bring the misery we just do not know what level it will be.

i just wish i could have talked my husband into buying that mattress 4 yrs. ago when i first wanted to!

rose