Describing my pain. For better medication.

I am sorry if this is boring, but I am not sure what I am dealing with. I want to take your advice and go and ask for better pain medication. But I wanted to go with some sensible description.
If you all would indulge me, I would like to describe my pain and its habits. I shall keep it as brief as I can, I know it isnt going to be much more interesting than watching paint dry....but appreciate any help.

I get migraines, they come every 4 days or so. They are very painful, one sided and usually start in the night.
They were diagnosed as menstrual migraines about 16 years ago.
Sometimes I get nauseous, but I am never sick.
I take Migards/Frova. They take about 3 hours to make me feel crap, and 3/5 to improve the pain.
They knock it from 10 to abt 7. Occasionally, they do better than that and knock it down to say 4/5.

Usually (but not always) the following day is easier and I get by on OTC (which is all I really have)
Sometimes this doesnt work much, but I tough it anyway.
The next day the migraine is back and I take another Triptan, ditto for day 1.
BUT sometimes it is back the following day instead of missing a day.

In between all of this, the 4 days "off" I wake each morning with pain, often up the back of my head, and down my neck, sometimes it is also in one side of my head, but not of the severity of migraine. I try to wait and see if it might back off, because sometimes it does. If it doesnt I take OTC, and they work, or not.
Regardless of medication it can come and go.
It also moves around my head. Like today, it was on the left until about 3pm and now it is on the right.
'So far today I have not taken anything. Neither have I really done anything, moving about is not comfortable today.

I am effected by going in the car when my head is bad, and I cant go out in the wind, I guess I tense my neck.
Noise and flickering lights can be a problem, but not always. Nothing I eat makes any difference that I can tell.
I often cant talk on the phone, it can trigger the "other" pain.....it usually backs off again after an hour or so.

I think I have two pains, my neck hurts all the time and I don't have good movement in it.
I also have FMS and (transient these days) IBS.

I cant think of anything to add, and its already longer than I intended....are you asleep by now...sorry.

Please offer any suggestions as to how I can best present this and any medications I could try asking for (I am in UK!!!)
At the moment I am taking 9/10 Triptans a month (since october when things got worse) and OTC 3 days a week.

Thanks so much for even getting this far.
Pen


In the time it has taken me to type this, it has gone back to the left of my head and is worse......

i think printing off what you have wrote here and taking it with you to gp along with hubby would be a start, i find it difficult myself to express just how the migraines have affected me and my family, i usually end up just sitting there crying, so last time i took my mum, hubby was working away and when i couldnt talk any more she picked up the slack and continued to tell the gp how much of my life has been affected by the severity and frequency of the M episodes,

i am in a different position to you, as it sounds like you have had all the blood tests etc years ago, but it could be worth repeating all of these seeing as your migraines have changed in frequency etc,

can you change your gp, we have 10 in our practice and i have gone through them all, and in the end plumped for the one who i know can be persueded to do things such as bloods etc, not the best reason to choose gp but i was desperate and she was the one who helped my mum 15 years ago, so along with my mum being there she agreed to a long list of bloods, ct scan etc being done, all came back normal of course!!!

which take me back to hormones and hereditary reasons, anyway i digress,

pen you sound really low and i worry about you, take your hubby and try to see a different gp and if necessary start from the beginning all over again, with tests and preventatives, exercise etc, if nothing else it may give you some hope back and make you feel like you have a plan, rather than letting them completely overwhelm you,

the day someone thinks i have tried everything and i have nowhere left to go, and noone can help, is the day i the illness has got you good and proper,

thinking of you xx

Cant do this for the moment, got a bit bad, but Theresa, thanks so much. What wonderful sense it makes.
Ciao for now
Pen

Well, our drugs here in the US are different from the drugs over there in the UK, so can't advise you there, but, don't they prescribe rescue meds? You know, medications to take when triptans and OTC don't work? I have stadol nasal spray to use as a rescue med, and it's a lifesaver. The generic name of stadol is butorphanol, look it up in wikipedia. I know it's prescribed in Canada, so it may be prescribed under a different name in the UK. Worth checking into.
There are other rescue medications a doctor could prescribe as well.

It sounds to me as if you are waiting too long to take the OTC. In my experience, waiting to see if the headache will go away before you take something to aid in getting rid of it, whether it's a migraine or not, is never a good idea. Take whatever you need to take, whether it's a triptan or an OTC, as soon as you feel the headache coming on.

I used to have a big problem with daily headaches, and when I didn't treat them, they developed into migraines. My pattern was very similar to yours Pen, though not as severe. But I have bad headaches - not really migraines, but raging headaches - every day. I'd try to ignore them for as long as I could before breaking down and taking ibuprofen, mostly out of this misguided sense that I was "weak" if I took too much over the counter medication.
That's a bunch of baloney. The headaches eventually would turn into migraines. It would take 2 or 3 days, but eventually I'd wake up with not just a bad headache, but a horrible, level 8 migraine, that the triptan would barely touch. I couldn't work, couldn't drive, couldn't eat. Imitrex could only knock it down to a 6 or 7, and stadol would work only half the time. Urgent Care was my friend, they knew me by name. The ER was always an option, albeit an expensive one. I dreaded waking up in the morning. I was going through a bottle of ibuprofen, 18 100mg imitrex, and 4 vials of stadol, a month, and that was a good month.

The whole pattern changed, mainly when I learned to respect those daily headaches and treat them as soon as they reared their ugly heads. A headache is a headache. If I have to take an OTC, I don't wait anymore, I take it.

Of course, I'm on a good preventative and that helps. My daily headaches have been cut down drastically. I changed my diet and cut out refined sugar and flour, too. I stopped eating out and cook at home alot more, and eat more vegetables - all due to budgetary reasons, but it's helped my headaches so I'm not complaining too much. I do not drink alcohol at all any more.

But I still think that the biggest change is that I treat my daily headaches as soon as they come on, and don't try to wait them out. That's my two cents' worth. I hope it helps.
And maybe try asking for a rescue medication from your dr.? It might be time to switch to a new doctor too, if the one you've been seeing is no longer able to help you.

Good luck. Pain-free days.

BTW, I envy you living in England. I've been there twice, and loved it.

Pen,

Your description was good. I understood what you were saying, and I do agree with others that if you can, take someone close to you with - I find that lately words fail me more and more. Just can't express myself in a way that a doctor (well another human) can understand. I also find that verbalizing pain is hard - it's not the easiest and it does take a lot of concentration and thought.

You described my symptoms...not 100% but really close. Every morning I wake up with pain, usually sitting at the back of my head and depending on the day it can move side to side or go to a full blown M. If I get M, it usually starts in the a.m. - not always upon waking but within an hour or two. A full blown M, well I have 3 days of misery - but can get them back to back shooting an entire week. The pain in the morning can be bad, but often gets worse throughout the day....sometimes it resolves at night, lately I've been going to bed early to escape it. If it's gone to an M, I take one of my imitrex injections - if I take it sooner it helps more but if I wait, 50/50 that it's going to help - less if I really try to stick it out (which I'm learning is not a good option). I also find, even on the just pain days, that I have unusual reactions to sound on occasion (which suggests M but it's just that) and sometimes light. I have neurontin to help manage the pain but it's a blind shot as to whether it really helps. Starting to move up the amount per dose and taking it earlier to see if I can head it off.

Are you allowed to take two triptans in one day? Just wondering as I'm allowed to take 2 injections an hour or two apart if I really need it. It might be a difference in triptans though.

Rescue meds - I thought that's what triptans were. Are they really something else? If they are what's the difference?

HeelerLady, the way I've understood it (ie., they way they are prescribed to me) is like this:
Preventative: taken daily, hopefully help prevent migraines. I take topomax as a preventative.
Abortive #1: taken if I'm not sure if it's a migraine, ie., OTC. Usually ibuprofen. If I can ward off the headache, and keep it from turning into a migraine, so much the better. Sometimes I can't, because the migraine hits with no warning. Then it's time for ...

Abortive #2: Also known as (at least to me) the REAL abortive. Taken at the onset of the migraine. For me that's the triptan, right now imitrex 100mg pills. I've tried the injections too, they work well for me but the pills are cheapest.

Baby Abortive: Tramadol. I take this alongside the imitrex. Imitrex on its own is not very effective for me, if I don't take it with either 2 tramadol or 4 ibuprofen, the effectiveness is cut by about 50%. I had samples of Treximet though, that worked fine on their own.
(Problem for me was cost, Treximet is new and expensive and I don't have insurance. I love when the doc gives me free samples!)

Rescue: taken when the abortive does not work, even if I've taken the triptan twice, once at the onset of migraine, once again after 2 or 3 hours. If the migraine is still coming on, and getting worse, then I need a rescue med. For me that's stadol. I know for other people, it's vicoden or hydrocodone or demerol - ie., to the ER for a shot of demeral. I can't afford ER visits, so I use the stadol. It's worked well for me, and I haven't had to go to the ER in about 4 years. Thank god. Last time I did was because even the rescue med would not work, what a rager that migraine was!

Not everyone uses rescue meds, but I was lucky with my dr., he put me on this regimen and it works well for me. Some people need that 2nd line of defense, some don't. Listening to what Pen is describing, it sounds like she does. My dr. worked this plan out with me way back when, because I was not responding to triptans very well. I had tried them all with very little success. I had marginal success with imitrex. He tried me on migranol too, and it did not do a darn thing for me, it made me feel worse. Fioricet didn't work, vicodin doesn't work, hydrocodone doesn't work. Very little works well for me.
Luckily, I eventually got to where I could take triptans if I took them with advil, and then discovered tramadol worked well too. But in general, triptans are kind of hit and miss for me. I do worry what will happen when imitrex loses its efficacy, but I figure I'll cross that bridge when I get to it. In the meantime, the stadol is a miracle rescue med for me. Maybe by the time I get to the point where neither imitrex or stadol work, I will have hit menopause and my migraines will go away. LOL I can hope.

I am now in bed. I have got through the day on no medication. I am quite chuffed with myself...Sad isn't it.
Anyway I will answer your kind posts in the morning (head permitting, hope so, g.kids coming tomorrow)
I just thought I would send the following list of pain killing drugs licensed for use here in the UK.
It might clarify things a bit.

Tolfenamic acid
Ibuprofen
naproxen
ketaprofen
meclofenamate
Aspirin
Paracetamol

The rest are Triptans. So you see we are poles apart when it comes to pain killers.
I am sure there are others not licenced that perhaps they might use in hospital, but otherwise, thats it.
Now this list is a couple of years old, so there may have been something added, but that's it.

HOpe this helps when you all are trying to be helpful to the likes of me....
Going to sleep now, and pray I (and all of you) might wake up in less pain.....it used to happen.....

Night. and thanks.

OxyContin is available in 5 mg (blue) tablets in Canada and the U.K.; 10 mg (white) in Canada, the U.S., and the U.K.; 15 mg (grey) in the U.S.; 20 mg (pink) in Canada, the U.S., and the U.K.; 30 mg (brown) in the U.S.; 40 mg (tan) in Canada, the U.S., and the U.K.; 60 mg (red) in the U.S.; and 80 mg (green) in Canada, the U.S., and the U.K.[17][18][19] In 2001, Purdue Pharma suspended distribution of 160 mg tablets in the U.S. because of the "possibility of illicit use of tablets of such high strength."[11][20]

wikipedia

You must find yourself another doctor. Oxycontin is a strong narcotic pain medication meant for moderate to severe pain and if this is available in the UK I am under the assumption there must be other options as well. HEROIN IS LEGALLY AVAILABLE in the UK to treat cancer patients!Link Scroll to the near bottom, note that most doctors rarely prescibe it anymore as they find morphine to be just as effective. In my searches I have also found that UK doctors also prescribe methadone as well. Many people believe this is a drug just to help heroin users with withdrawl symptoms but that is simply untrue. It is also a narcotic pain reliever.

There are options out there, albeit they may be difficult but if you are desperate..and it sounds like you are..you may want to concider finding the right physician for your situation. I'm sorry you are suffering but please concider doing some research and finding the right doc. I know it's hard, but we'll support you in your search!

Pen,

Sorry you are suffering so at the moment. Just wanted to clarify what pain killers are available in the UK vs the US as your list is not accurate.

In the UK we have pretty much everything the US uses. The generic drug names are the same, and often the formulation of the tablet etc is the same, but they often have different brand names which is why it seems the US have a whole different array of drugs. They also have more cxombination drugs marketed out there, where as in the UK drugs are more likely to be just one drug per tablet. This is not neccesarily a bad thing, just might mean a person needs to take more tablets or not take extra ingredients that aren't really needed.

There are some differences in what drs will prescribe, and as you rightly point out opioids are rarely used in migraine in the UK. I think this is more a culture thing and I am pretty sure there are patients in the UK who DO get opioids prescribed, it's is just difficult to find a dr that will. But I believe it is also difficult to find a dr who will prescribe them in the US too.

I know you've had a poor NHS experience, but I don't think it is truly representative of the NHS and what is actually on offer. Things really aren't that different to the US for the most part.

I will post again later as I wanted to read a few more of the threads first. My computer died a while ago and I now have a replacement, so a lot to catch up on!

Take care

Amy

HI Amy,
Wondered where you had got to. Nice to see you here again.
I cant argue with you Amy. I can only tell it from my experience and perspective.
The list is from Andy Dowson's book. It was printed in 2002 so as I said, probably some more included since then.
I wasn't suggesting we don't have, them, but that they are no licenced for migraine here.

My experience is so far 3 neuros, one of whom you know. And 8 GPs.
The GPs have never offered anything other than NSAIDs, and I only got the Naproxen and Diclofen when I suggested trying them.
The first neuro told me my CT scan was clear. I had migraine and take Triptans.
Second neuro told me I was causing it all myself and get off all medication, just stop it. And see him in 6 months...I did not go back.
And the third one you know, but he just keeps wanting me to take preventatives I dont want. Never a suggestion of any stronger pain killers. He just told me to take 12 Migards every month.

It may not be typical of what the NHS has to offer, but what am I to do about that Amy please?
I know you know more than I do, but i can only go with what I am offered.
If you know different of course please tell.

Thanks.
Pen

I agree with Auntibubbs. Sometimes I take medication even before the pain begins. Like yesterday I was snowmobiling and forgot my sunglasses. I could just "feel" that blinding snow was going to cause a migraine, so I took a squirt of DHE and warded it off before there was even any pain. I have never had a migraine not progress to an unbearable point so I take medication right away. I don't wait to see.

I agree with whoever above that said to bring what you typed along with you. It is a good description and easier to give to the doctor than trying to explain.

Problem is I dont have anything that actually works other than Triptans Linda.
And I cant take them every day even if I wanted to which i dont.

If i had something that actually dealt with the pain I would take it.
I dont think I am alone, there are others on here that dont seem to have much luck finding their poison.

I know there are a lot of you that do not have something that always works. I do not know how you do it. I think I would camp out at my doctor's office.

I think if I did that they would either step over me, or have the police move me for causing an obstruction Linda

I don't think I would care. Except if you got arrested, you would be without any of your medication.

Sadly the former is more likely.!!!!

Pen,

It seems as if you're going through a rough patch right now and doubting yourself all the while. I too need to talk to my doc about pain meds cause I really don't have any except the lifesaver of Stadol from my gp. And I probably use more than I should because the pain's really bad every day. I can go through a vial a week and that's only taking it at night when it really does the least good for my whole day.

Anyway, I agree that you should type up some notes and print them out to either refer to or hand over. I know how difficult it is to "complain all the time to your doctor" but if everything was good, you wouldn't need that doctor. They can't fully help you until you help yourself.

Now I'm going to try to take my own advice too. I know it isn't easy.

Rachel

Pen,

I have tried triptans and OTC too, as it seems that is the extent of medication you tried. You have found even more success than I have at that. I am happy you have that relief but it isn't good enough because I see the suffering in your posts. For that I am sorry. I have to say though, and please note I am not pushing narcotics or barbituates, but you have never tried these because as you said you have never been prescribed them.

How would you know if they work if you won't even get out there and give it a go? I am not trying to be rude or crass, please do not take it that way. My head is not in the greatest of moods today so neither am I. I am just trying to point out that without trying different things you will never find your "poison."

The ONLY thing I had found was Fioricet w. codiene and occasionally stadol (fioricet works better but hardly on tough migraines, stadol kicks those out of the park). I have tried frova, imitrex, treximet, relpax, zomig, another triptan(s) that I don't remember..I know I have one more to try before I have run out of triptan options, vicodins of different strength, percocet, nucynta, codeine, darvocets, and skelaxin. Over the counters include aspirin, tylenol, ibuprophen, naproxen, Diphenhydramine (benadryl) and all mixed with caffeine.

Until you go through a list like that or longer you may not find what you are looking for. I know it is a pain in the rear and certainly expensive (depending on insurance) but if you want the pain gone and it is really important to you, you will do it. I have barely any money, we are behind on our rent and electricity bills as well as all other bills, yet I still go to my appointments and try new things because the pain is severe enough where I can't lead a normal life. It sounds to me like you can't either so if it were me, I'd do whatever I could to fix it.

I hope I've helped, good luck with this and feel better.

Thank you, and I am sorry your head is bad today. Its been a long day for me and I am going to take an earlier night for once.
But just to say, I have never had to be reluctant to try some of these drugs you mention, as I have never been offered any.
I have had all the Triptans over the years starting with Imigran. Almogran was the last and it was very disappointing.
I have always tried the meds I have been prescribed, but despite all the hol
Horrible preventatives they are happy to handout like smarties (M&Ms to you), they have never offered anything else.
I am not about to start buying drugs on the internet, so I take what I a given.
Of course I have asked for something stronger....voltarol suppositories was what they gave me.
once a dr came out to me and he gave me two morphine tablets (I cant recall what form).
They made me sleep. And
P sleepy all the next day. Didn't touchh the head though.
I was on dihydrocodeine for years for my IBS pain. No impact on the headaches.
I cant take them now,after 20 years and no addiction or even a side effect, now they make me feel terrible.
Anyway that how it is, so I hope that makes things a bit clearer.
Thanks for your input, I hope it backs off for you, so hard with a little one.

Thanks for the well wishes, I appreciate it much. Luv bug Gia is a blessing thank god so it isn't too difficult, however today she is particularly fussy from constipation so..eck.

Please Pen, it sounds like you are giving up to me. I may be wrong but I hate to hear that tone. Do not give up, there are many doctors out there to try, even if it is a hassle. I know you hate preventatives as do I but you might want to concider giving it a go to get your regular doctor(s) to take your case more seriously (they should anyways but some doctors are @$$es!!). They may concider giving your stronger medication after they see you trying some preventatives. Who knows? Even accept the script and maybe not take them (I know guys, razz me if you want..but it is what I would do if I REALLY needed meds and REALLY didn't want to take what a doc was giving me)

Try try and try again Pen. Don't loose hope. You said in a previous post you are strong and a fighter, well then fight for better care, a doctor who understands and will treat you appropriately. As far as the morphine pills go, yes they will make you sleepy for a bit but if you continue taking them hopefully your body would get used to them like anything else and that side effect will go away. If the pain relief wasn't good, then shy away from the same pills he gave you but look for different ones. Check into barbituate/light narcotic combinations, they work wonders for me and others. Whereas you have to be careful with them as you would with any other meds, they have saved my life so many times. They also have caffeine in them so they relax you but don't knock you out..or at least that is my experience with them.

Hope everything goes well.

Pen, have you tried Syndol. It's the only OTC med which will give me any relief . . . but in moderation.

Liz

LizzieB wrote:Pen, have you tried Syndol. It's the only OTC med which will give me any relief . . . but in moderation.

Liz

I have thanks Liz. They wipe me out but not the pain....not enough aspirin I think.#
I only seem to respond to aspirin....better than dihydrocodeine....

Pen, LG has given you some very sound advice, particularly with regard to preventatives. I think you should consider giving them another try.

I was dead set against preventatives for a long time, but I did exactly what LG said, I just accepted the script for them - and I even filled it, why not, when my insurance was excellent and it only cost me $10 or $20 to fill it for 3 months? - in order not to rock the boat, and still get my scripts for my abortives. I finally agreed to myself to give preventatives a try again, and went back on topomax, albeit a lower dose, and was really glad I did, because the side effects weren't as bad with the lower dose, and it worked like a charm.

Sometimes too migraines change over time and what didn't work for you before works now, so that's another reason to try preventatives. Look at it this way, what do you have to lose if you give a preventative a try? Even just a trial run for, say, 3 months? And then compare that with what you have to potentially gain.

You named a few things that you said didn't work for you besides the triptans. But have asked for other medications, specifically by name, from your doctor, and been refused? This may take a bit of work on your part, researching what drugs are out there in the UK that you haven't tried but that you could try and could work for you, that you'll have to ask for, but again, what do you have to lose? Besides, you can ask us here on the board - you do that already, and as you can see, the community here is very good about doing research and helping each other out.

I know you said some the stronger meds aren't "licensed" for migraine treatment; that's not a phrase I'm familiar with. In my experience, if a medication can treat a condition, a doctor can prescribe it to a patient. If drugs are licensed for specific diseases only, I've never heard of that. Doesn't mean its not true of course, just I'm not aware of that. But it sounds like other people have had some success getting other medications prescribed to them for their conditions, so I'm hopeful that you can find the right combination of abortives and a doctor willing to prescribe it.

Last, I agree with LG. I know this kind of pain, and the situation you're in, is upsetting and depressing, but don't give up. It sounds as if you're being a bit defeatist - and I wouldn't blame you for feeling that way, anyone would after dealing with so much and not getting any relief. Try to remember that there IS a doctor out there who will be able to help you, if not your current one, then another, who will understand your situation better.

Hope you're feeling better today.

Never defeatist Bubbs. I get worn down when I get a bad run of Fibro pain and my Gut is upset too. With the migraine as well All 3 is hard for me. But it doesnt make me feel defeatist, just down and then angry.

I havent been refused medication I must look for where I put that because it isnt accurate.
To be honest I dont want any medication. I hate it. But I have to try.

It isnt really that long since I had the preventatives for me to assume I have changed that much, but I will consider.

Finally licensing. In the UK they only licence drugs for certain conditions. They are used off licence, but it sees to be down the the individual doctors and often has to be the consultants who can do this. That how my neuro explained it to me anyway. I am sure someone will correct me.

Thanks

Pen, I see. I understand, off license use doesn't mean a med can't be used to treat a certain condition. That's the same here as there. Way back when topomax was first prescribed to me, it was off license. I first went on topomax when it was not regularly prescribed as a migraine preventative.
So it seems to me that there are medications that you could try off license. Like Oxycontin.

This is going to sound harsh, but I'm going to just say it, and I'm sorry if it offends. I don't mean to offend, but I have to call it like I see it. If I'm wrong, I apologize. I don't know what else to call it except defeatist when you post asking for help, then shoot down everyone's suggestions, and basically post saying "nothing will help me," despite all the research and effort everyone here on the board puts into helping you. I feel like we are wasting our time helping you; perhaps I and everyone whom you've shot down should just stay out of the threads you start.
You post things that are defeatist, like what you said about your doctor's office "just stepping over you." Really?? Yet you won't take anyone's advice about getting a new doctor?
LG posts alot of very good advice, and she does it while she's in the midst of her own severe migraine, and you dismiss all her advice. It makes me wonder why she or anyone bothers.
You ask for advice and help, then say you'd rather not take medication. I don't get it. I understand everyone has the right to take or not take meds for their migraines, but you appear to be asking for advice regarding meds, then turn around and say you don't want to take them. Then why ask?
If I sound a little frustrated, well, I am. I like to help people, it makes me feel like by helping someone else, I get a handle on understanding my own condition better. But I feel as if you shoot down all these attempts to help you. I know that may be because you're in a bad place, but to me it does seem as if you are being defeatist.
Sorry for the rant, but I had to speak my mind. If I've offended, I'm sorry. I offer the consolation that at least, from this point on, you won't have to see my posts in your threads any longer.