I am new here and hoping to talk to others who suffer like me. I have had chronic almost daily headaches for the past 6/7 years. I have been to my GP and was referred to a neurologist who mainly just tried to medicate me. I have had amitriptyline, propananol and topamax none of which eased the headaches but just gave me awful side effects. I was prescribed sumitriptan for pain relief and it's the only thing that relieves the headaches but I am becoming more and more reliant on them. I tried to help myself and after attending chiropractors and an osteopath who confirmed my neck muscles are really tight and I realised I always have a tender/sore neck I then connected this to my office job where I have spent years slumped over a desk.
I then to my joy discovered a headache clinic here in Belfast where I live who specialise in headaches. I seen a therapist here who confirmed I suffer cervicogenic headaches which are coming from my neck she described the muscles in my neck as being like a rope they are so tight. The therapist performs manoeuvres on the neck vertebrae to loosen up and help. Unfortunately this treatment takes months to help and isn't cheap. I started off having 1/2 sessions a week but still don't have a big amount of relief. I am now in a situation where I can only afford one session once a month and this isn't enough to help. I am suffering badly at the minute I have had headaches every day for past week I feel my neck so stiff and tight. I have had to take sumitriptan every day which isn't good at all.
I am so worried what to do now, who to turn to what next. I seem to have exhausted most things and feel I no longer have any quality of life as I am in constant pain and always exhausted.
Does anyone else out there suffer these? And can offer any hope/ advice/help??
I am really at the end of my tether.
Thanks
Joanne
Written by
Joboyce
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I'm so sorry. My neck is also a contributor to my problems. Have you considered short-term use of muscle relaxers to help loosen the neck while you visit the therapist, just to get things moving faster? If you take sumitriptan too often you will develop rebound headaches and make the situation much worse. Triptans are the worst offenders for rebound headaches. You might need to use a steroid pack to break the rebound. Also, did the therapist give you stretching to do at home? I rub linocain cream on my neck at night. That helps me not get too tight while I sleep. You can also get trigger point injections in your neck and upper back for temporary relief while you're waiting for the long-term therapy to help. Be aware of how you're using phones/laptops/tablets at home. Just don't! It compounds the problems from the office. Sounds silly, but it's a huge factor. Google forward head posture correction. Take breaks during the day and stretch. It took years to cause this problem. Unfortunately it won't correct itself quickly. I know how awful these headaches can be.
Thanks for replying. Haven't tried any muscle relaxers can you suggest any? as I don't know much about it. Also what is a steroid pack?
Am going to look up the cream you suggest. The therapist didn't give me any exercises but tells me to use a heated wheat bag and keeps going on about going on a cross trainer but I don't have access to one. I wonder who could refer me for the injections? It's so hard to get any help I feel so he GP just goes through a list of meds and not much else!
I know what You mean about phones etc I feel I need to cut down my usage as I can even feel pressure/tenderness at back of neck/ head now when typing.
Do you exercise and have u ever tried acupuncture? I would try anything for relief x
I live in the US, so I'm no good for a physician referral. I used Baclofen daily for several months. I know you're trying to avoid daily meds, but it really helped. It's central acting, meaning it doesn't act directly on the muscles, so you're supposed to be able to use it more than a week or two without causing weakness, like other muscle relaxers might. People with MS take it daily to help keep their muscles loose. It's generic over here, so it didn't cost much. If you're taking a triptan more than twice a week, you could be getting headaches from the triptan itself. The withdrawal of the triptan stimulates the brain to trigger a headache to get more of the triptan. Insurance companies here only allow you to get two doses a week. (Sometimes I take three doses a week, but that's supposedly the limit.) Supposedly Tylenol can cause rebound if taken too often, and any medication with caffeine added to it is likely to be a rebound culprit, too. (Google: medication overuse headache. It'll make your head spin.) So if you're in a pattern of rebound headaches, you have to stop taking the triptan, and the headaches will subside after a few days or maybe a week or so and resume their regular pattern. The steroid pack helps your body power through those HORRIBLE days without the triptan. The doctor has to prescribe steroids. I have tried acupuncture. It was many years ago, and I remember it was quite relaxing, and it would help for a day or two. My insurance didn't cover it, though, and I couldn't afford to keep doing it. My neck and upper back are so sensitive I can't handle massage. I get a two-day migraine from a 15-minute massage. Heat is great. I have a stand that elevates my laptop so it's eye level. Found it online. Then I use a separate wireless keyboard. My phone syncs to my laptop, so I try to respond to text messages on my laptop to reduce that strange posture you use on the phone. Also I do mindfulness mediation and took some biofeedback. Research shows this actually changes your brain activity and calms it, helping with pain. I think it helps me cope with the pain and anxiety related to it.
Didn't realise you were in US, things work slightly different there I know. I get 12 sumitriptan tablets a month on free prescription that's how our system works. I think muscle relaxants here in UK are dizapan which have to be prescribed. I looked u the lidocaine cream is it used for haemorrhoids? 😂
You have suggested some good tips which I am going to look into.
I just went in my drawer and found the jar so I have the exact name of the prescription - it's Lidocaine Ointment USP 5 %. Directions are "apply to affected area three times daily." The insert describes it as a topical anesthesia.
Oh you poor thing ..I thought I was bad!!ive had daily headache /migraines now for seven months ..finally seeing neurologist on thursday..like you I have been on all sorts of meds to no avail..last week I literally cried in my gps with pain and frustration ..he prescribed lyrica ..I am on day three now with no pain or symptoms(which were strange sensations in the head, burning,pressure,blocked ears,face pain,face flushing)..I dont know if these painfree days will last but heres hoping..I am also on 50mg nortripryline daily
That is a very good news, these anticonvulsant drugs work for some people - in my case, nothing worked. To be honest, I won't mind to have zombie feeling if I can be headache free ! Doctors tend to increase the dose if it does not work, since in your case, it has worked straight away, this means it may not be necessary to increase the dose at all ! I know it is too early, but at least there is hope !
I may be pessimistic, but please don't expect too much from neurologists - they are usually as bad as others.
Hi troy..thank you for your reply ..the releif was very short lived im afraid ...the burning sensation in my face and head has already started back up..I am so disappointed.I was also hoping for miracles from neurologist if im honest..ah well another day another headache!!
It's awful isn't it. I have found it so hard to get help too. I feel GP's just want to throw a cocktail of horrible addictive, life sapping drugs at you! Just be careful of Lyrica I have heard it makes you feel like a zombie which isn't good either.
My Gp/neurologists didn't even ask questions or link things to my neck and posture I had to work it out for myself.
I really have no quality of life as it's just another day another headache 😢
I really feel for you I know how that feels..my first gp suggested maybe clot on the brain or tumor!!!!im not joking and when mri came back clear she basically said oh its migraine get on with it!like you im constantly trying to figure out what is causing it...my life revolves around this now...im missing family time work and recently a family wedding.Ive heard some bad stories about lyrica but to be honest I would try anything..im on low dose 100mg daily so hopefully will be ok
Have you tried an osteopath at all? The neck crunches they do are pretty terrifying and it takes a few sessions to have an effect but I usd to find it quite helpful and in the end got it down to one session a month. Been no need to go since they retired me 7 years ago...think the desk job and stress weren't helping. Migraines still an issue, stiff neck less so these days.
Yoga is good too if you can find someone to teach you the asanas that focus on cervical tension.
I have had headaches every day for 35 yrs.. The only thing that works for me is Rizitriptan and Sumatriptan. I also take 3 to 4 exceedrin a day also. I now have gut problems and that really affects your health. The only thing that helps is staying away from chocolate, alcohol, and too much sugar. I eat healthy and have always exercised. It is genetic!
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I used Baclofen daily for several months. I know you're trying to avoid daily meds, but it really helped. It's central acting, meaning it doesn't act directly on the muscles, so you're supposed to be able to use it more than a week or two without causing weakness, like other muscle relaxers might. People with MS take it daily to help keep their muscles loose. It's generic over here, so it didn't cost much. If you're taking a triptan more than twice a week, you could be getting headaches from the triptan itself. The withdrawal of the triptan stimulates the brain to trigger a headache to get more of the triptan. Insurance companies here only allow you to get two doses a week. (Sometimes I take three doses a week, but that's supposedly the limit.) Supposedly Tylenol can cause rebound if taken too often, and any medication with caffeine added to it is likely to be a rebound culprit, too. (Google: medication overuse headache. It'll make your head spin.) So if you're in a pattern of rebound headaches, you have to stop taking the triptan, and the headaches will subside after a few days or maybe a week or so and resume their regular pattern. The steroid pack helps your body power through those HORRIBLE days without the triptan. The doctor has to prescribe steroids. I have tried acupuncture. It was many years ago, and I remember it was quite relaxing, and it would help for a day or two. My insurance didn't cover it, though, and I couldn't afford to keep doing it. My neck and upper back are so sensitive I can't handle massage. I get a two-day migraine from a 15-minute massage. Heat is great. I have a stand that elevates my laptop so it's eye level. Found it online. Then I use a separate wireless keyboard. My phone syncs to my laptop, so I try to respond to text messages on my laptop to reduce that strange posture you use on the phone. Also I do mindfulness mediation and took some biofeedback. Research shows this actually changes your brain activity and calms it, helping with pain. I think it helps me cope with the pain and anxiety related to it.
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