After some lovely people responded to my first post on here I thought I would share my anxiety with you and see if anyone has any pearls of wisdom.
I've had Headache and Migraine for 20 years. Taken so many different preventatives, tried Botox, Nerve Blocks, some machine that I had to hold against my head to give me shocks etc etc.
For past 2 years I haven't been on a daily preventative as I was supposed to be giving my body time to recover...but as time has gone on and Headaches and migraines got worse and worse I've been relying on Almogran ( a triptan) and paracetamol to get me through most days for the past 8 weeks. Unsurprisingly the consultant says I have medication over use headache in addition to Chronic Migraine, Hermicrania Continua and now probably tension headache.
So as from 27th June (after a nightmare period at work will be over) I am going to attempt to go 'Cold Turkey' and not take any other drugs except 375mg of Naproxem 3x per day.
I'm really scared, I cry every time I think about it. I just can't imagine how I will function without painkillers. I've talked to my Boss who was understanding and said that If I need to come in late/go home early that will be fine. But I'm worried that just getting out of bed won't be an option if I get a migraine and can't take a triptan.
Has anyone done this and got any advice?
Did you go to work or get signed off? I've heard stories of people being admitted to hospital because they could not deal with the pain without medication.
How long did it take until your headaches and migraines got to a better state?
Thank you in advance
Daisythesnail xx
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Daisythesnail
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Hey huni it's not easy but can be done. I went cold turkey for 6wks ( no naproxin, preventor or pain med of any kind). Got signed off and drank loads of fresh orange bacause neurologist advised it detox your body faster.
I was in bed the whole time, the doc said 10 to 12 days should see all meds gone
I actually ended up doing 3mths, the headache got weaker 10 day's in but never left. I was diagnosed with hemicrania continua and have finally been properly diagnosed with a issue with my jaw which causes all the same symptoms.
Anyway, i got an all singing/ dancing migraine after 3mths and thought - ok ive not had pain relief of any kind for 3mths so 2 paracetamol should do the trick!! Nope!! Sumatriptan 100mg helped for 2 hrs and thats all
Went into hospital had DHE treatment every 7hrs day/night over 5 days. Still had migraine daily 24hrs a day.
That was 18mths ago and still have daily mild/ moderate headache which escalates throughout the day to migraine.
Sumatriptan injections are the only relief i get.
Start jaw treatment tomorrow ( already had 2 ops but my jaws locked )
Do it !! If for no other reason but to see if it helps x
You have made a very brave step. Now expect to go through a very difficult stage. Although for me it couldn't have been worse then I felt being poisoned by a cocktail of medications. Coming off medication isn't the only thing you have to do. You have to start to change your diet to only eat natural, cooking from scratch, no bought packets to make sauces or soups no stock cubes etc, start to find out what beside the medication overload can also trigger your headaches. For me it can be anything that contains lemon/orange/gooseberry. Cheese, the rennet ,the cheese culture, makes my bloodpressure go up which then causes pressure in my skull and triggers the migraine. You may have completely different triggers, find out by trial and error. You will always have the chance of a migraine, but you can reduce the frequency and the pain by various ways. Like I said before, you will be in charge, you become the manager, if you let your eyes off the ball, old patterns slip in and you will be where you started.
For now, stick in there, don't be anxious, be liberated that you have decided to do this. Feeling anxious can be a trigger as well. So put your sunshades on ,take an antihistamine each day and go for a nice walk to get your mind off the pain which you will undoubtedly feel.
Don't forget to start reading the information out there. I am glad to hear your boss is so understanding, don't make that an excuse, show him/her that you are doing what is asked of you despite the pain. Get an APP to help you to relax when you feel anxious, or better still join a Pilates or Yoga class. Don't do anything too strenuous but keep exercising. Listen to calming music, in other words, manage your condition!
One other thing, keep a food diary and a schedule by the way you set your day and night. Go to bed at a certain time ,get up at the certain time, don't have sleep-ins. Regular meal times.
Like the person above, visit a dentist, you might not be aware you are grinding your teeth regularly to cause a headache.
Hope you find your way to manage your migraine/headaches.
All the best, you are not alone in this, we are all trying to be good managers.
Thanks so much for all this advice. I have been meaning to really think about my diet for a long time, perhaps this is the time to start...although that seems like an enormous undertaking.
I do grind my teeth and have a mouth guard (don't often wear it though).
I like the idea of going for walks. I'd like to go for a walk today, but because I'm off ill (my head was exploding earlier - bearable now following triptan) I feel like I can't in case I'm spotted and it's assumed I'm skiving.
I can relate. I hate taking meds so i went cold turkey and changed my diet as you described and though im not migraine free , the pain is not as intense as it ever used to be! I keep my one meds (zomig) as this is my only true med that helps me , on standby though im only taking half a tab a time now if needed. The doc has again prescribed me another triptan but im reluctant to even try it :/ im looking for more natural ways to ease my pain now. Though gotta say going from wanting to literally rip my head off with the pain to mild/moderate pain i get now ,this way is a massive improvement to how i ever used to be. Clean living seems to help .
How can a person with a severe migraine go out for a walk, or even contemplate going to work or even call in to work? Through the pain and trauma? I don’t think that is a reasonable idea. It is completely impossible to function in light, or near sound or smell. Life goes into a black room.
Yes I agree, I myself used to spend 3 out of 10 days in bed in a dark room with a bucket, chucking up bile until a doctor came to inject me to stop that. I was on triptans and on pain relief that could kill a horse. One day I was that bad I contemplated to take the whole lot! I told my hubby when he patiently came in to the room to clean my bucket, asked him to please take them away as I was at my wits end. He then took charge, same day. Demanded to have me referred. Got on the phone to NHS helpline that same evening and we spoke to a Nurse practitioner who advised to try 600 mg ibuprofen together with 1000 mg paracetamol. ( suppositories) lie very still on my left side to keep it down so they could kick in to work, if necessary again after 4 hrs but no more after that within a 24 hr time span.( I always try to nibble a ginger biscuit) It worked to get me through that episode. Got seen by neurologist who checked me out thoroughly MRI, CT , blood tests, neurological tests, I found out I had no feeling in my legs below my knees and both my feet, reason of my frequent falls, legs just gave up. Found out most of my migraines were as a result of deficiencies in vitamins B11, B12, D. I was started on B12 / Hydroxocobalamin injections, I had the loading doses longer then are described by most people on this site, until there was no further improvements in all my neurological symptoms. You know my migraines improved first within 14/21 days, the rest took a lot longer, but the feeling in my legs came back and I walk normally without the aid of a stick. I also know my triggers so help myself by trying to avoid them ( strict diet) from happening, barometric fluctuations I regretfully cannot do anything about. I then refer back to using Ibuprofen together with paracetamol to get me through. The migraine doesn’t last longer then a day and the pain is very much reduced mostly the nauseous( not being sick with it anymore) and tiredness wears me down a bit on those days. The other vitamin deficiencies were also treated and I finally have my life back. I wish I and both my parents had known about B12 deficiency earlier in my life. My life would have been a lot more enjoyable and different! This Swedish trained neurologist was a godsend, she happened to be in the UK at the right time! I wish it could be the cure for all migraine sufferers, I know this not to be the case but by telling my story it might help some.
Hi ACritcal, I don’t know if you’ve heard about the Stanton Protocol for Migraineurs? It is a private Facebook page you may join to get relief of migraine from natural means, mainly diet. But one thing stands out for me in what you say and that is barometric pressure migraine. The way that is relieved is by taking table salt when pressure goes down , and taking potassium rich foods when pressure is going up.
Since I’ve been in the group I have noticed migraine with barometric pressure, something I never realized before.
If pressure is falling, take 1/8 teaspoon salt and one 8 oz glass of water three times a day. If pressure is rising, eat potassium rich foods: salmon, beef, pistachio nuts, almonds, almond butter, dark meat chicken, avocado. If you like you May check out the group.
Do you also take B1 supplement? I recently heard that helps migraine as well. So good to hear you have great relief from the lab tests undulating the need for B12 p, 11and D. Do you still get B12 injections?
Thank you for mentioning, I will have a look at Stanton Protocol , I follow a natural everything diet, cook and bake from Scratch. Know my triggers, lemons oranges, mandarins , gooseberries also ascorbic acid used as preservative in a lot of food and medication. I am managing myself quite well now but your mention of using salt is a new one on me. I’ll look into all this. Thanks again!❤️
Thanks so much for sharing your experiences and for your advice. I will try the orange juice thing. Really hope your jaw work minimised headaches and migraines
Hi I've just had my ear canal impressions done. The London specialist advised i am a taxtbook case, the reason they invented it.
Normally take 3wks to make but he's prioritised me and wants the implants in asap 😃 1wk they should be in.
Can't believe I've gone through all this hemarania continua stuff 😭. Because neurology gave me that label I've had to fight like a bear to have someone listen 😭.
I have had migraines for 40yrs now but this past 5yrs they've been diff and uncontrollable but the last 2yrs has been horrific with daily migraines 24/7.
I should say i only eat natural and never eat processed foods ( no chinese/ indian or anything else) i don't touch caffiene and drink loads of water but if i put diluted juice in it i make sure it doesn't contain aspertame. Fluids and eating small but regular are very important, that's how i controlled mine until 5yrs ago.
You can do it huni it will benefit you in the long run 😘😘
It can be done because I did it and was on pain meds for over 10 years with a fentanyl parch towards the end. I had to detox slowly, which took 6-8 months and the migraines got much better plus my brain fog got much better. I think I'm hitting menopause because most back to migraines daily. However, I'm trying really hard to handle the pain.....not easy. I haven't worked since my detox, I'm lucky enough to be able to stay home.
Good luck with your detox and try to stay positive. Allow yourself to have bad days and don't feel bad when you can't get out of bed some days. You will get through this stronger.
I've done the 6 week naproxen detox from triptans quite a few times (I slip into medication overuse headache really easily). Everytime it's been pretty similar, one really horrible week of staying in bed and then a noticeable improvement where I'll have really good days (for the first time in ages) mixed with bad migraine days where I need to go to sleep. By about week 4/5 I'm usually LOADS better, and by the end I usually have far less migraines. My problem is that when the 6 weeks is over I gradually start using the triptans again and end up back when I started within about 5/6 months. It's worth it for the relief I get though.
Hi. I have recently been to see the national migraine centre in London after suffering for 40yrs with chronic migraine. I was diagnosed with medication overuse and had to go cold turkey before returning so they could get a clearer picture. I have to be honest and say that I didn't cope well although I did improve my eating and fluid intake. I was told before I started it that I had to eat 2hrly, drink at least 2 litres of water per day and go to bed and get up at a regular time each day. I was also taking 600mg of magnesium citrate per day which I was allowed to continue.
The first week I had horrendous migraines and was admitted to hospital (but I have been admitted before with this) then the next 3 weeks I was like a new woman!!! Not one headache!!! The last 2 wks I had about 3 per week.
I went back to the migraine centre last Friday and was told I could use my triptan medication again but no more than 10 per month. I am also taking Venlafaxine daily (an antidepressant that has found to be useful in reducing migraines).
I will definitely keep up my 2hrly feeding regime and water intake. I am just about to order Migravent from Amazon online.
Hope this helps!!! My employers have been brilliant in supporting me needing to go home early/days off but I was told I could get signed off for my cold turkey period but chose not to. Xx
I've chosen not to be signed off too. But am fearful that I might need to in the end, which will mess everyone about more than being signed off in the first place. I'm off work today but only my 3rd day off in 9 months. Often I struggle through the day on paracetamol and triptans then go straight to bed when I get home.
I will try the eating every 2 hours thing. I like eating so that shouldn't be too hard!
The eating definitely makes a difference to me although I had to stop choosing to eat biscuits or cake every two hours but I did notice a marked difference and the migraines crept back when I slacked a bit on my 2hrly eating and also drinking at least 2ltrs of water a day. It takes a bit of organisation and I am not the most organised person but definitely try it!
Hi so sorry to hearing your awful experience with migraines. I was diagnosed with medication headaches a few year's ago by the NMC. They say that if you have to take medication 10-15 or more days a month then the treatment itself may be affecting the frequency of headache. Like you say I was prescribed Napoleon 250 mg 3 x daily for two weeks then 2 X daily for two weeks then 1 X daily for two weeks and also Amitriptyline 10 mg at night. For me the 6 weeks were not too bad at all. I wasn't working so that made it easier. Try having a few neck and shoulder massages during the 6 weeks to reduce tension there and I used a wheat bag heated up in the microwave and then put around the back of my neck. I wish you the best of luck and although some people have a bad 6 weeks go in with an open mind as starting off feeling very tense about the whole experience may not help.
Thanks, that's so true. I am wondering if my current even worse than usual headache migraine period in the past week might be due to stress and worry about coming off all tablets.
Great to hear that it was a positive experience for you. I will try to be more positive.
I had a problem with medication overuse and was told by the Migraine Centre in London that I needed to stop using any triptans for a month or so. I was only allowed to take Naproxen. In the end I only managed do about a week or so and went back to the Migraine Centre for help. I then paid for an Occipital Nerve Block. This was quite expensive but it was worth it as it gave a good two weeks of being pain free. I then carried on with Naproxen and amitriptyline which helped me to steer clear of triptans for a few more weeks (it was the triptans which were the problem). Since then I have been monitoring my use of triptans with a migraine diary making sure that I do not use more than about 12 - 14 a month. This is still too many but some months are better than others. I'm looking forward to a time when I get less than 6/7 a month - that will be a break through for me. Good luck.
Deep freeze cold gel, walks by the sea, salt and vinegar crisps were my saviours when I went cold turkey. Neurologist said just stop all meds. I was really ill for weeks. It didn't help. I am back on Imigran, indometacin for hemi, pregabalin and candersartan. I am going to work with doctor to come off them. In monopause and headaches are changing. Much more in neck very few traditional one sided headaches. Here's hoping it's nearly over. Good luck with your detox xx
I went cold turkey from zomig on 25 June 2015 and so far haven't taken any more. But then my migraines had reduced from their 3-day-vomit-stay in bed severity before I attempted this. I've had migraine since I was 20 (now 65) and although not clearly hormonal they eased in severity after the menopause.
I was strongly motivated to give up as I was consuming at least 18 zomig (2.5mg orodisperible) every month, had developed a liver problem, a stomach ulcer, frequent palpitations and a recurrence of (ovarian) cancer after 7 years clear. Oddly the steroids given to combat chemo sickness kept headaches at bay while I was on them - but not a long term solution!
I now am on no medication apart from paracetamol when a headache strikes. I get about 4 severe headaches a month but they rarely last more than 12-15 hours. I never take more than 3 doses of paracetamol for an attack as time seems to clear them and I don't have to take to my bed any more
Best of luck with that. Sorry to be negative but I went cold turkey at advice of my doctor after I felt like I had a continuous headache for a week. I have a good diet anyway, but decided to clean it up more. Less tea and fizzy drinks and try to eat cleaner. I paid for acupuncture and cranial osteopathy (the latter I had for a year) and after realising there was not much difference I gave up and went back to tablets.
I was freelancing at the time and with the cost of time off work and the osteopathy sessions, it cost me £2,500 out of my pocket to go cold turkey!
I do agree with comments below about eating frequently and drinking lots and keeping the same routine ie bedtimes.
My consultant mentioned about eating just before bedtime so that I don't fast my body between dinner and breakfast of roughly 7pm - 7am. 12 hours without food (even if resting/sleeping is too long) She said to eat something that is slow energy releasing.
I looked the food up and they are: yogurt with cherries particularly or other fruits and nuts and seeds if poss. Only fresh fruit as the other kind is fast releasing. Avocado on brown toast. Spinach, tomatoes (although someone said on a post they cause them!?!). Cucumber. Carrot. Sweet potato. Melon, berries and apples too. Ham sandwich. She said fats and protein is what is needed.
Sorry for the negative post but hope yours goes well!
I went through cold turkey of Lamotrigine a few years back as it had lost its effectiveness and I had concerns about its effects on my mental health - Lamotrigine is also prescribed for bi-polar conditions, and if you're not bi-polar it can make you more prone to symptoms of either.
My GP wasn't overly happy with me doing this - he wanted me to increase the dose, but could see how unhappy I was on it so, with reluctance, supported me. As it happened I didn't need his support, I did it by myself!
I could only find one blog, written years ago, that was helpful and there was a suggestion, from one person, that you play it very much by ear, but found slow and steady decrease better i.e. lower the dose every 2-4 weeks.
Interestingly I found that having a longer period i.e. 4 weeks made the symptoms worse than when I lowered the dose every 2 weeks.
What guided me was when the symptoms of cold turkey had disappeared, I added a few days extra, then stepped down the dose. It worked.
I have been left with residual symptoms, and I'm a little more anxious and prone to depression, but it's manageable. So it's worth doing. After all, if it doesn't work out you can always go back onto medication again.
Going cold Turkey means not taking anything doesn’t it? Taking Naproxen ??
I’m more afraid of the pain killers wrecking my organs - heart , kidneys , liver than anything else ( apart from the pain of course). I stopped taking HRT suddenly and got the worse migraines ever for 8 days ( that was a few years ago).
Please try and eliminate one thing at a time . Eat really healthy, etc.
I did give up a stressful job and did something else. I’m 7 years on and still get regular migraines but my pain levels are less . It’s not easy I still do take pain killers but only when I really need them and only as a very last resort! Do treat them with caution!
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