When the pain will stop

I feel like its the end for me, in soooo much pain... My new neurologist compared me with a heroin drug addict. I am on Relpax every day. Maybe she is right, but I am not taking it for pleasure, i need it to take care of the twins ( 2 years old ).

So I stopped the relpax, now i feel really really bad, vomiting all night, can not sleep... I know its expected but when the pain will stop? The only thing i can think of is suicide but i can not do that to my boys, would ruin their lives. Please help! In a new city, have no help, no friends, only my husband who works all the time.

18 Replies

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  • First of all, you should never, ever, just come off a prescribed medication, you should be weaned off it.

    Secondly, are you sure that your pain isn't stress induced? You sound like you have a heck of a lot of it! Twins, in a new place, no friends... So, get yourself some relaxation techniques. Ask to see a pain specialist, not just a neurologist, one who specialises in pain!

    Sometimes the meds cause more side effects than the actual pain!

  • Oh you poor thing. I know how you feel. I am also in constant pain but at least I don't have any little ones to look after every day. Is the pain just the head or shoulders and neck too. I am on the detox stage where I was told I would get worse before I got better. (that bit is true).. Hot water bottle under my head helps at night and rubbing Ibrufen gel into my neck and shoulders.. Still in pain but it does help.. I know how a junkie must feel as I am dying for a fix of my imigrain. I gave in once and had a pain free day but I am determined not to give in again. Please persevere . was told it takes about 6 weeks for the detox before you feel the benefit.. that is stop all tea and coffee and no painkillers. I hope this helps xx

  • Not a thing you should try and deal with alone. When I have bad attacks I have a bottle of oxygen. In its self it will not get rid of the pain,but it usually lifts it enough to manage to sleep. Perhaps see if you can try that?

  • This is really long, as I just started typing and didn't really stop.

    I don't want to throw you, because I've written a lot. But I hope you can pick out parts now or later, and maybe return to all of it when you need. The link at the end should help you, with a phone number, for someone to speak to, if you need urgent advice. Don't be afraid to tell someone there who you phone, in confidence, how bad things are for you.

    ---

    Cardigan_man below says he has a bottle of oxygen when he needs. So do I - I buy them through the post ("Oxyfit" or "Boost") - expensive when you've little money, but better than treats or anything like that. But I mean, I have a lot of things to help me through - the triptan drugs, the high strength codeine, doxylamine ("Kirkland Sleep Aid") which used to be in the old version of Syndol tablets, melatonin, diazepam on prescription, sickness tablets, NSAIDS aspirin and ibuprofen and a lot, a lot of supplements for calming, energy when I need it, nutritition and so on. Without these, I'd be in a heap all of the time. All of the things I need are "emergency" treatments - I don't take preventative drugs anymore, they don't help me. Once I had one which worked, but then it went wrong in the longer run, and I got much worse.

    Can you increase your salt and potassium? That might help. Eat bananas and dates for potassium, and put salt into a strong drink like Ribena berry juice where you won't taste it so much. This can help some people. If you take more salt, you have to take more liquids too (not just tea or coffee - they dehydrate the cells which need to have water). With more salt, take more potassium.

    Most migraineurs I've come across say that taking more magnesium helps them. You can get magnesium tablets for a couple of pounds in many chemists.

    ---

    I'm really sorry to hear your story. I've been ill with chronic migraine mostly, but I'm also comorbid with CFS & more, for well over a decade. There is no way I could consider having a family or relationship. I can't even go out usually and the cognitive neurological problems now mean I can rarely read a book - just odd snippets like on the internet.

    If this happens to you during your life and all your life demands, which can be very hard for many people anyway, it must be utterly shocking and would lead anyone to despair and great fear.

    You ought to be able to get some help from social services for a minder / housekeeper to come most days, or even every weekday. This may not be for the whole day (or it may) - but if you found a minder you and your children liked, even for half the daytime, this could give you a lot of rest and relief. I'd say 2 years old is old enough. I think I was younger than 2 when both of my parents went back to work and I had a minder / housekeeper with my brother, and then on my own when he went to school. It was fine. We really liked the lady, she seemed part of the family, and then Mum and Dad came home around 4 pm.

    If you don't already have anything in the way of this kind of help, can you think about it seriously? Being that sick, and being that stressed from the situation - maybe it could help a lot? Young children are fine with other people when they get used to them, because they are developing their concentration span, and actually another face, another person would probably have a positive effect on most children. As for the parent, as the child's tiredness wanes, the parents' demands only increase a lot. So, it's a really good idea.

    If what social services can provide falls short, you might talk it over with your husband about seeing if you can afford to put income towards it. Your leisure time spendings, and just saving up, if you are, could wait for now. In a couple of years, both children will be at school for most of the day, and then, soon, all of the daytime until 3.30 or after. So, the money concerns for taking care of your children would cease, more or less, by then.

    I know that you'd probably want to make the most of this time, a special time for your children and you, but what could it mean if it's a torture for you (and maybe not so good for them, unfortunately, then)? Maybe it would be better to spend good time - when you're not so bad with the children now in their early years. A minder can be very good.

    You need to be aware that Migraine is recognised in the UK, not just as a disability, but as one of the very most disabling conditions. It can be a life ruiner, an absolute life ruiner.

    I know. Mine has been ruined. I'm male, with a prognosis - likely to get worse (probably with other neurological symptoms getting worse too) - but at least I know I can't do anything by this stage. I still try, of course. It has taken me years of struggle with acceptance. Maybe I'll get better - the acceptance, trying part is always a kind of internal war - but when you have really serious responsibilities such as young children - it sounds to me like torture, dangerous, the opposite of what life is. If you can't do something - it is not right to force it continually - life is never meant to be like that. Can't really means can't. You can pretend you can, force that you can only for so long, and then can't is likely to somehow show just what it means.

    The acceptance / therapeutic rest / trying cycle will always go on, but if you're just stuck in the trying part, and without any professional help, things are likely to get into much more torture.

    ---

    Can you ask your GP / neurologist to see a neuro-psychologist? They may be tricky to put up with, because a little part of their job is to try to see if your illness is caused or continued by a psychological basis. (It can be funny, the neurologist is saying one thing, the neuro-p is saying the opposite. Both say its their jobs - you just have to try to put up with it. They both know they're doing it. It's a case of just listening, to words - don't conclude anything, necessarily. Perhaps at all. The NPs have had successes in the past with trying to take people out of physical illnesses such as migraine (and even more everyday physcial illnesses) through psychological methods.

    But that's only a little part of what a neuro-psychologist does. In the UK, in the NHS at least, the main thing is that they check your symptoms and situation, and how you cope, and if you're getting worse. Basically - it's just asssesment and referral. You go through around 6 or so appointments of assessment - appointments face to face with the neuro-psychologist, and then he / she should sum up your situation and refer you to people who can help.

    That's the idea, anyway. But things may not happen quickly or too smoothly in the NHS.

    If you haven't had your condition too long - the drs may think you're not a long enough sufferer to see a Neuro psychologist. This may also be true if you haven't any other neurological symptoms with migraine - for example, fits, memory problems, slowness, confusion and other cognitive disorders (which I developed during having migraine over a lot of years).

    So, if it's just migraine / not too long, and you may not see a Neuro-psych., you need to ask both the medics (dr / neurologist) and the social section (social services / social worker) if they could make a similar kind of assesment - both medical and social - situation.

    When someone says things are so bad that, even though they love their family, it's too hard to cope with and they think of killing themselves, this is really serious, it's just a really hard situation -and this is ONLY what these people are there to deal with most. I mean that's the most important kind of situation in their working lives, the most serious. Tell them it's the most serious. Tell them you need this kind of assessment for geting the kind of help required.

    You know, you can take spells in hospital, in neurology, if things are that bad - and it may give your family and you a rest, and you may come out feeling more ready and able for a while.

    I don't know all which can be done, but there are a lot of things which can be done.

    If you don't want to mention you have had suicidal thoughts - you don't have to, out of worry of consequences or whatever which you think might go beyond what you can then choose. You can say something like "if it weren't for the children, who ground me and make me know I'm needed, I'm sure i would be ending it. But because of the children I'm ok, but I don't know for how long". You can suggest the direness of your situation, saying how things can become, if you're fairly sure that being completely open is likely to harm you and your family more.

    At the same time - you are diagnosed in neurology, with neurological disorder - so your treatment should be for that, and you should be getting it. You should be getting relief with your situation and help for your family.

    is there anyone who you can ask to help you try to talk with the drs and social services? It may be better if you asked your dr / neurologist himself / herself to contact social services, telling the dr to stress that it is very serious, and concerning neurology, and not a psychiatric case or anything like that. Anyone who is stuck in a situation they can't cope with, who has a physical disease can develop mental health problems from that.

    Often medics don't even call it mental health problems. They just say that, when pain is too bad and ongoing, for example, and someone may be suicidal, it's too direct to be called mental health problems - it's a direct, unavoidable symptom of the physical condition.

    You shouldn't worry too much about what they call it, but just try to get more help beyond a preventative drug which hasn't seemed to work. That's not anything at all - especially when the neurologist is saying you have to come off it, and making you feel bad just for treating your migraines with the drug which they gave you for it.

    You know, most of the drugs don't work for most people. People switch and go on and off drugs which might help migraine. Some are helped, some don't, some are made sicker.

    Unfortunately, the medics don't know much about migraine or how to treat it. It doesn't go away, while it helps to try and come to terms with that. That means anyone needing help soon should not hold out longer for some kind of medical aid. You might be lucky with a drug or botox or something, but most don't have that kind of fortune with severe / frequent migraines.

    But what can be done by the medics / social help people is helping you in your situation. This ought to be done. Can you contact someone who can help you? If not, there's the Citizens Advice Bureau. Also, the Migraine Trust advocates on behalf of patients within a healthcare system - phone or write to them or email. Tell them how bad things are and seem to be staying, and tell them that you really need help.

    There's a phone number here on the site linked to, and if you phone them and tell them your situation, rather than going through the download help kits (which you can too), they can try to find you some urgent advice. They know a lot and have helped a lot of people.

    Best wishes.

    migrainetrust.org/advocacy

    If the Migraine Trust say they cannot help so much for you immediately (they're not able to go into detailed medical information plans, but should give you good advice for a start in most situations), ask them for bodies who can help.

    These bodies often differ by area.

    The Migraine Trust say:

    "If you require independent support in relation to your migraines, access to treatment and the UK healthcare system the Advocacy Service may be able to help. To make a referral please fill out our online referral form and we will contact you to discuss your suitability."

    migrainetrust.org/patient-a...

    But you could also try to speak with them on the phone them, first, if you want.

    Citizens Advice Bureau will also have people who are really there in order to give advice to people in terrible situations, in health and so on. Try phoning to see if you can speak to someone over the phone, or they'll tell you you can come in to speak to someone if not.

  • I've suffered for over 20 years with chronic migraine and chronic back pain lots n lots of meds too I became addicted to codine through trying different types for both problems. I haven't had a preventer for about 6 months now still get chronic migraines but I use a nasal spray (Zomig 50mg) to relive the pain witch is amazing but they still keep coming back. I've been waiting since Christmas for an appointment for botox treatment. You could ask your neurologist to try Zomig I recommend it to my friends too. Hope you get some help soon.

  • What town do you live?

    Really, I do know what you are going through, but you are doing the right thing. Get OFF all those so called migraine relief tablets, they work for a little while then you get back in the vicious circle to get you to try yet another drug from another pharmaceutical company. It will take quite a few weeks maybe even a month or two/ three but it will get better. Then start a real good routine like you do with your twins. Eat regular, sleep regular. Eat fresh home made food,without additives. Takes some getting used to but worthwhile. Find your triggers, by having a food and drink diary. Read labels before you put it down your throat. Stick to Ibuprofen and paraceatamols when you get a bad migraine, put sunglasses on and rub Headache stick on your forehead. If you have been sick, start nibbling ginger biscuits also good for nausea.

    Tell yourself Tomorrow will be better and if it isn't then the next day etc. Never let suicide enter into it. Remember YOU are NOT sick you have a disability like many other people suffer from and you HAVE, for your sake as well as for your babies and your hubby,to get control of it!!! It won't be easy, but you can do it as so many of us are doing every now and then, or very frequently, nobody ever said life was easy, it isn't! You will get an occasional break and if you do , enjoy this period and store to draw on it when days are toff.

    Sorry to say these things but self pity is negative and gets you nowhere.

  • Hi...I can really empathise as I'm sure many people here can...you are certainly not alone...i can say I have been there...i was so down about the situation I was in, the situation I thought I was putting others in...unbelievably jealous of those who didn't get these damn things..only I knew how rubbish my life was...so I know where you are now....

    Well...please believe me when I say..it will get better...I still suffer regular migraines, but they are not as long, not as harsh and not as frequent..

    And i hope yours too get much much better....

    Everything the others have said in response to your plea all make sense, do what you can to identify your triggers, they may be dietary, they may by stress related, they might be physical...I've lost count of those who said theirs were caused by neck problems or their eyes...

    Do you exercise...do you have the time?? Mine are made better by running...crazy isn't it...but when I least want to do anything...once the aura has gone and I can see of course... I go for a run...my wife suggested that!!..after she got so angry at the migraines...not me..the migraines...it was her way of getting me to give them a good kick...by the way I am in no way suggesting anyone do this...go for a run....but it works for me...

    I hope you find your way to give those migraines a good 'kick'...and make yourself better and stronger.....

  • Hi, Twins-Mom; I won't pretend I feel your pain, even close! I have arthritis, stenosis and diminishing migraines (yay! Diminishing!). The docs practically dare me to get better so, I have no qualms about hammering them about details (why CAN'T I try Hawthorne for my potassium deficiency, etc.). Sometimes I think they're trained to throw jello at the wall until something adheres . . . life is too short! Everyone responds differently to drugs - MOST OF THE PEOPLE I'VE TALKED TO DON'T RESPOND WELL, at least not in the long term. I was on maintenance-Prednisone (everyone I told this, rolled their eyes and said "That's some freaky sh*t!"). A year ago a cascade of health problems arose out of that but my patient (if not understanding) GP started doing the best she was trained to do. I've finally gotten off the Prednisone, am trying Tramadol (don't like it much but it's better than the pain of the Stenosis). My blood-pressure issues are clearing up, with the addition of super-healthy diet. One thing I must say: I'm in the States so we don't have as enlightened a Healthcare System as you Brits (don't get me started on the Insurance Carpetbaggers! Thank GOD for Obamacare!). We do have individual, proactive healthcare PROVIDERS, who start things like a Migraine Class. We go back 2-3 months later to see if different things (like acupressure! Meditation!) work because everyone in the class is so MOTIVATED to get off drugs! I wish I could say that any one thing will work for you but everyone is different (I learned that some people get migraines from sleeping on their stomachs!). Don't lose heart; be confident in knowing what works for yourself and tell your docs "Yes, this might be OK; let's try it" or "No way I'm doin' that! HELP ME FIND SOMETHING BETTER!" They're trying to catch up but we need to help them.

  • Thank you all for your support, suggestions and help! I feel a bit better, the vomiting part stopped, now I am waiting for pharmacies to open ( all closed for Easter ). Btw I live in Toronto, Canada. Its different here, migraine is not considered a disability and you pay the full price for the medication. We are in debt because of that. One of the twins had surgery 5 days ago and I needed all the support I can get from my neurologist but she said I need to be strong, get through the pain alone. She also prescribed flanerezine and naproxen, thats all. And she encouraged to take magnesium, B6 and Q enzime 10.

    I had 2 days of pain free, but I spent them at the emergency with my son, who had surgery. Today the pain came back but its not sa bad as before. I can live with this. I hope it doesnt get worse because I need to take care of my sick little boy.

    Thanks again, everyone

  • Oh! You're in Canada! You know what Michael Moore always says: "You know the Canadians? They're just like us only better!" Goes for your healthcare, too, EXCEPT for this one thing . . . Your unsympathetic doc doesn't surprise me; non-headache neurologists (I work with them!) are so specialized in their own area (mine do Alzheimer's; some here do Parkinson's; some TBI - it goes 'round and 'round) they don't get how debilitating this is because it's not like the straight-forward immediate-and-ever-after devastation that, say, ALS is. Chronic, they rarely do! But the Magnesium does help! If any MD ever goes into a nutrition speech, pay attention! They've done some homework!

  • You poor love. you know l felt my migraines where due to stress and Holland and Barrett suggested Magnesium citrate, bingo l have not had a migraine for 4 weeks and l was having them on a daily basis. The most important thing is don't give up especially dealing with all on your own, get back on your prescribed tablets until your well enough to fight your corner, and get a second opinion. Also join your local crèche so you can meet people and maybe strike up some friendships. good luck keep fighting x

  • My neurologist says that the pain varies person to person and also for some it never goes away.

    I have nerve blocks they are not addictive, non harmful to children and make you feel so much better.

    The nausea for me was a sign my pressure was high and needed a spinal tap.

    Maybe get a second opinion?

  • Hi again. I hope you're OK.

    I hope I didn't sound too negative in my post above, about the help the western medical world can (or I was saying, more, can't) give migraine sufferers.

    There are a couple of options which ARE seeming to help quite a lot of people who have them. One I've mentioned, the Botox injection into the head, which lasts a good few months. I think most people would get these twice a year or so, some more often, some a bit less.

    It's a procedure, it takes a few hours I think (I haven't had it), it may be a bit scary having a procedure, it can hurt - but then you can already hurt so much so often, and this may well help. And of course, as a procedure, it will be over. It ends - a few hours, maybe pain, maybe some lingering pain, but that will go away. The migraine pain may keep coming back - and maybe Botox will help a lot.

    If things have been so sore and hard and dispiriting for you that it seems you can't cope with this life, then this REALLY IS something to be aware of. Botox. Is this available in your area? Is there someone you can ask?

    I thought you were in the UK, so I gave details for the Migraine Trust. (Sorry I thought this was a UK mainly site - I confused it with another one I've visited at times.) I hope there is a similar body in Canada who might help you. Can you Google this?

    In the UK - and notoriously we have been v slow at migraine and migraine treatments. Still there are a lot of doctors like yours, who just won't pay it much attention. But, even here, Botox is now reasonably widely available for severe / frequent migraine sufferers.

    Can you try as much as you can to see if you could get on a list for receiving the Botox treatment? Because it really could help. It's quite a high proportion of people receiving the procedure say that it is really helping them a lot.

    Also, the other treatment is Occipital Nerve Block. Again, I think this is a procedure - might hurt the day you get it, but hopefully will reduce your migraine pain substantially.

    YOU REALLY NEED to try hard to speak to someone to really try to see if you can get either one of these treatments, and see which would be best for you.

    Seriously - this might change everything - one of these treatments. And if one doesn't, there's still the other to try. Many have been helped. All is not lost, if there are some things you can still try which might be kind of wonder aids. Things have looked up for migraine sufferers since these 2 treatments came about.

    They don't help everyone - but it's so worth a try. They seem to help a considerably bigger portion of people (in the longer run) and with much fewer side effects than preventative migraine chemical drugs.

    Really see what you can do. I hope this can be available for you, because it would be terrible if it happened not to be. In that case, maybe you could get it privately, whether in Canada or south across the border in NY state or around there? If you don't have the savings - it's certainly something to save for.

    For us in UK, it would be free for most who have migraines serious enough. Just don't forget - yours ARE serious enough - that much is clear, I don't know that there would be many more people more serious position with migraine than you. Don't forget that, but don't forget that many people have been helped. Also, if you make it through anyway, with herbs and whatever else to help you - the pain does seem to get less bad eventually for most people. It doesn't mean anything when you do have the pain, but it is something.

    My terrible pain got much less. (Earlier in my life I knew I would often have ran to the window and jumped out to end it, if I could have even moved at the time. Or done anything other than just breathing so deeply to try to releive the pain - like trying to relieve a ton of bricks on your head merely by breathing). But, unfortunately, I'm more disabled now with chronic migraine and other neurological conditions that I had been then. But at least the pain isn't usually so bad, or so frequent. It's changed - I have bad spatial problems, and dizziness and can't do much, and sickness, but the pain isn't nearly as bad / frequent. That 's something big.

    When you just want it to go away, and eventually it does go away quite a lot, it doesn't matter so much that you're sick in other ways, and can't do much, like read books and so on. At least many of those bricks have gone, that's what counts, really. It's all I hoped for so many times.

  • Hello Icb10. Thanks for your long replies :), it keeps me busy but informed :). I tried Botox back in November 2014 but I changed cities and I needed to start the whole process again. Here in Canada in you need to be couple months on preventive medication, if it doesnt work, then you might be accepted for Botox injections. By the way, it takes couple minutes for Botox injections to be injected, and its ok, not painful at all.

    Well, it didnt work for me, maybe because I was on painkillers everyday. But the doctor said that it doesnt matter if I was on painkillers. I didnt feel an improvement, I didnt feel anything, to be honest.

    I would try it now. I just started my preventive medication last night. I hope it goes well.

    Thanks again to you and everyone for support and understanding!

  • Hi again. I'm really sorry to hear that you've tried that and it's not a treatment which can help you.

    Terrible that Canada insists you are on a so-called "preventative" first. I think that used to be the case in the UK, but I think it was dropped, as that is common sense.

    They're totally different treatments, and most people know that there are no drugs made for migraines. People only try anything the doctor says "may be a migraine preventative for you" including developed slimming pills (Topomax), anti-depressants (Amitryptilline etc), epileptic drugs, you name it, as they are alleged to have helped other people.

    ---

    I dont know if you've seen this. Maybe it could work? Who knows. It is really expensive though. Then again, it would be significantly less than I've paid for supplements in the stretch of two years, probably even less than I've paid within a year or just over a year.

    medicalnewstoday.com/articl...

    reviews.costco.ca/2070-en_c...

    cefaly.ca/

    Again, the reviews in Costco look hopeful. Who knows, though?

    ---

    I've used this quite a lot myself. I don't know if you've tried it. It has helped me over a longer time, when I have migraine or don't have it, a few times a week. Ideally once every other day or more often, but 3 times a week minimum.

    It helps reduce blood pressure and relax you, I think, so is something that may help over a longer time which you can do when you are not having the worst migraines. There are very few of those things, so I like this:

    "Resperate".

    ebay.ca/sch/i.html?_from=R4...

  • Please get some help about your emotional feelings. You may have PND which probably exacerbates your pain symptoms.

    Your neurologist should be able to provide you with domperidone or metoclopramide for the nausea symptoms. It does work for most people.

    I was on cocodamol 30/500 (just for pain, alongside other meds) up to four times a day on an almost daily basis for a very long time, and had to be weaned off these and onto aspirin. I found this very hard and now finding myself going back to 8/500 doses of cocodamol after a year-off.

    Weaning on and off is better than stopping altogether as it makes your body go into 'shock' mode. It doesn't know what to do and finds it hard to rebalance. Try and get some help - even if you don't get help from your doctor you should be able to find emotional support on here from people that have experience similar symptoms.

  • Domperidone used to be available here in the UK over the counter, but has been withdrawn, unfortunately, like a lot of good things.

    It helped me in conjunction with paracetamol & codeine - together they really perked me up and took away the bad feelings.

    I think you can still get in here from a doctor, but unfortunately, my GP doesn't seem to like it, and I've thought I don't think he's going to give it to me. I have brought it up a few times.

    He does give me Prochlorperazine, which also is quite good for sickness, nausea, dizziness. (I also have Cinnarizine for dizziness which can be OK, but doesn't feel good after it wears off).

    TwinsMommy, if you haven't got this already, You can ask your dr about Prochlorperazine. You can't take it so often - like the triptan drugs - but if you're sick, nauseous, dizzy, you do need something to help for some times. It's too hard to just put up with that all the time.

    It comes as either something you can swallow or buccal - the buccal pill you place between your top lip and your gum above your top teeth. I take this, it works quicker, though is annoying, tastes a bit off, but you don't notice it after a minute or two.

  • Ask if you can get a nerve block in the head.. It sounds worse than it is. I had it in the dr office. You can even drive home.. Since you have children and if you have suffered for years this is a good option, because your not taking any medication. They told me it will last for a month or more.. But look into it.. i wrote a post. If you would like to read it.. But i know i have tried everything and i was up for something new.

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