MIGRAINE

[pump321]

I have suffered from chronic migraines for 40 years and things have got worse over the years. I use Zolmitriptan (zomig) but they give me a rebound migraine so I'm basically on a treadmill of having a migraine, taking a zomig and then getting a rebound. I used to try to break the cycle by using MIGRIL but in the UK it is no longer available at the present time. Can anybody suggest another medication that is similar to MIGRIL that would perhaps help. I have tried so many other "triptan" medications but they just don't work for me. I am having acupuncture at the moment and it has helped a bit but it's not a cure.

[Mia51]

What a coincidence,ive had migraine for jst over 40 years.The only med that works for me is naratriptan,but like you i get rebound headaches plus chronic daily ones.I had acupuncture in August,it might have helped slightly but now im back to really bad ones.Im thinking of going back on a mood stabiliser to see if that would help.Have you had occipital nerve block?Nothing has worked for me so Last week i was at the end of my tether.Let me know how you get on.

[pump321 in reply to Mia51]

Hi bengal2013, Thank you so much for getting in touch.

It's amazing we seem to have so much in common, almost exactly the same experiences! I live in the UK and we are not offered anything like mood stabilisers or occiptal nerve block, are these injections? I have seen various senior neurologists and migraine consultants but they don't seem to have anything much to offer me. I could have Botox injections if I pushed for them but I'm really nervous that they could make things so much worse. I am a pretty strong person which is a good thing but I know my life not normal like other people's and migraine has ruined so many things for me. Please keep in touch and let me know what mood stabilisers you are given and hope they help you and you have a better spell. Happy New Year

[Mia51 in reply to pump321]

Hi Pump321,I live in Scotland so you should be able to try more things. The occipital nerve block is an injection in the base of your skull.Also mood stabilisers are jst epiletic med,I took them years ago.My neurologist who I dont bother with said my migraines are caused with depression,I dont know anymore.People trivialise migraine but dont know how it affects your life.This is the third year running I cant go on holiday with my husband as daily chronic pain spoils it.Its lovely to talk to you as a fellow sufferer as you sometimes feel so isolated.Happy new year to you too.Keep in touch

[pump321 in reply to Mia51]

Hi again, Thanks for telling me about the occipital nerve block. Some years ago I did see a Dr. who suggested I had some injections around my neck area. The day I went to the hospital to have them done the person in the consulting room who was before me, passed out and she was rushed on a trolley into the main part of the hospital. I suspected she had had these injections and I decided there and then not to have them done. I told the receptionist I was a lot better and then fled! I dare not go ahead in case the same thing happened to me. Like you my life is on hold. I spend my whole life worrying about letting people down so try hard not to make many arrangements as I usually have to cancel and that seems to make my friends really fed up if I do it too often. It's embarrassing and I feel so guilty and it worries me. If I do ever make it on a holiday I spend several days in the hotel bedroom with "do not disturb" on the door so it's a misery and I feel so guilty for my husbands sake. Will keep in touch, there's so many questions to ask! Perhaps we can all learn from one another. Bye for now

(PS: I do think that neck stiffness and tension are definitely connected to the migraines for sure but it's getting it sorted out thats the problem! The more people mess around with my neck the worse the migraines get - viscious circle!)

[pump321 in reply to Mia51]

Hi Bengal, Thanks for keeping in touch. I'm still pretty useless on this site. It seems we can all read each others blogs which is very useful - is this correct? I've just had 4 days of migraine which has laid me pretty low and feeling knocked out now with all the pain medication I have taken. No energy now just feeling weak and useless. I am trying not to take any more Zomig as they just make things worse. I have some Zomig nasal sprays but for some reason I dare not use them. I think I'm afraid I may have a stroke as I have very high cholesterol which my doctor does not treat me for as he thinks the statins may make my migrianes worse and I dare not risk them becoming any worse. Anyways, hope you are not having too bad a time at the moment. Bye for now

[Mia51 in reply to pump321]

Hi Pump,Good to hear from you again but not good that you have been ill.I have never been offered sprays so I dont know how they affect you.Its so frustrating when you dont do anything wrong and you still get ill.Just the last few days I have started walking my chocolate labradors a bit further than usual and im sure it helps.Mind last week I couldnt even get out of bed I felt so much pain.All Im trying to do is cut down meds.Take care,but keep in touch.its good to talk to someone who knows what youre going through

[BeccaWhite]

I was diagnosed with chronic migraine about four years ago now after having had an occipital lobe stroke.

I have suffered migraine since I was a very small child, never had any treatment for it/seen a Dr and did not realise how badly I suffered !

It now seems I am locked into a cycle of 24/7, multiple types of migraine and nothing stops them; all the specialist could suggest was drug therapy and Botox. I am taking huge doses of Topamax, Gabapentin with only minimal success, cannot take Triptans as I suffer from severe Raynaud's disease and had the stroke and refused Botox.

I am totally housebound now as a result of this and other conditions, have been disabled by RSD for almost 23 years, so I am afraid all I can say is that we are all different and react to the medications prescribed to help us in different ways. But there is no cure, sadly.

I wish you luck.

[Mia51 in reply to BeccaWhite]

Hi Becca,It must be awful to be housebound,what is RSD?Is that raynauds disease.If you dont mind me asking what caused the stroke?I feel awful complaining when I hear of someone worse than myself.Take care

Justine

[BeccaWhite in reply to Mia51]

Hello,

RSD/CRPS is a Neurological disease.....the world's most painful condition yet no-one has heard about it ( and that includes most medics ! ) I have had it for 23 yrs, struck down when still at University and that was that. Almost lost my leg....the Achilles Tendon ruptured itself, they think my circulation stopped, a couple of parts of the Common Peroneal Nerve in the leg actually exploded ( consultants words, not mine ! ) and the leg started to die. Pain was indescribable really.

And I am still in constant, chronic pain as well as being more disabled year on year.

I have lots of other disorders....all very boring !

Not sure what caused the stroke, I have no indicators, was in my mid thirties at the time and underweight, low to no cholesterol, never smoked etc etc. The final test they performed on me showed I have a heart condition which I have had since birth, a PFO, hole in the heart. I had no idea that I had this and it can cause a clot to pass into the brain. But it doesn't explain why I had a clot in the first instance ! It's one of those unknowns !!

Nope, you're not complaining, you're asking advice.

And we all suffer in our own ways.

[pump321 in reply to BeccaWhite]

Hi Becca

Thank you very much indeed for your reply to me 4 days ago. I have been knocked out with migraines and haven't had hardly any sleep so feeling pretty groggy just now. I am so very sorry to hear how much you suffer and for so long now. It's unimaginable that you are suffering 24/7 with no relief and are housebound. I don't know how you cope, it make me feel so humble to hear how much you suffer. It's hard to believe in this day and age that we don't seem to be any further forward with technology or medication that could help to minimise all this suffering. I send you my heartfelt sympathy and hope that perhaps you have some days better than others, as you said, sadly there is no cure. We must all pray for one another and hope some day there will be a breakthrough which will help to alleviate all this unbelievable pain and suffering. Thank you for replying to my blog.

[Frustated]

Hi, I haven't been on here for a while, but couldn't not respond to you all who are fellow migraine sufferers. I have had chronic migraine for 22 years, have 3 different types of migraine plus backlash headaches form pain relief. It may sound a strange connection, but I had never been able to use my arms above my head even as a child, then 6 years ago started loosing sensation in my left arm and had increasing headaches/migraines, behind my eye, To cut a long story short I have thoracic outlet compression caused by an extra rib, which put pressure on the nerves running into the brain. I had it removed in Oct 2011 and the occipital migraines vanished and I regained the use of my arm. I remain on Sodium Valproate (an anti epileptic med) which helps reduce the quantiy of other migraines. I had a terrible bout of none stop migraine in 2013 which ended up with a hospital admission for pain relief, and I went on the internet to research alternative therapies. I found that large dose of magnesium 250-300mg daily could help, it worked for me and I was just about migraine free, but as I have entered the menopause it has not been quite as effective but I am still no where near as bad as before.

Hope this helps at least one of my fellow sufferers

Cathy

[Mia51 in reply to Frustated]

Hi Cathy,Sorry to hear youve had such a hard time.Im thinkink about going back on sodium valporate as I took it years ago.How much do you take? Also I have magnesium glycinate but cant swallow them,I was recommended those by a migraine sufferer,what do you take?

Justine

[Frustated in reply to Mia51]

Justine,

I slowly increased the dose form 200mg once a day, over a period of month(with my menstrual cycle as these affect my migraines too), I now take 200mg am and 400mg at bedtime, they are the slow release ones. I know the migraine association was doing a trial with a magnesium nasal spray in 2013 so it may bw worth following that up too.

Cathy

[johnsmith]

There are different types of migraines. The one I know a little about is caused by tension in the neck which causes muscles in the neck head region to over tighten leading to blood flow being impeded.

To something about this requires getting to know how your muscles are behaving. This requires observation. From there you work on not tightening the muscles which requires a lot of mental effort.

I will stop at this point to let you think and digest what I have said.

Reply to this post to get more information if you find it worth pursuing.

[Mia51 in reply to johnsmith]

Hi John,I do get tension in my neck and would be glad of any information

Justine

[johnsmith in reply to Mia51]

Thanks for the reply.

Not sure what information to give you. I do not know what methods you apply to deal with the tension in the neck.

So lets start with the question what do you do if anything about the tension in your neck?

[Mia51 in reply to johnsmith]

Hi John,I dont really do much about the neck tension,I did apply a heat pad last week and sometimes just stretch from side to side

Justine

[johnsmith in reply to Mia51]

Thanks, this gives me an idea of where to start.

The head which is heavy is designed to balance on top of the spine. When it is balanced virtually no muscle tension is required to hold the head up. What does often happen is that the head becomes no longer balanced on top of the spine. When this happens muscles start to hold the head up. The result tense muscles.

Muscles are nice bit of well designed biological engineering. However, well designed engineering structures are a finely tuned balance between function, weight and energy cost of maintenance. There is a potential problem with the muscle nerve strength feedback loop.

The design of muscles is such in that the more the muscle contracts the weaker it gets. The more the muscle contracts the more the internal capillary blood supply is compressed and shut off. The more the muscle contracts the more pressure is placed on nerves which can thus result in nerve malfunctioning behaviour.

The feedback loop says Mr Muscle you need to supply a bit more strength to do this task. Mr Muscle responds by contracting further. Mr Muscle finds that more strength is needed and contracts further all the while getting weaker as this happens. While all this extra contracting is happening the blood supply which brings nutrients to the muscle is compressed shut so nutrient can reach the muscle. The waste products produced by the muscle is taken away by the blood supply. However there is no blood flow because the contracting muscle has clamped the incoming blood vessels shut. At this point the engineering system is going past the stress breakdown point and the workings of the system break down. Your case the migraine attack.

A working pattern I have is to look at the problem while it is an ant running around. You can easily control a little ant. When you pick up the problem when it is an express train there is very little you can do about it. An express train carries a great deal of momentum behind it.

Ants are very small creatures and not easy to notice. In the case of the body it is easy to notice the express train and very difficult to notice the ant. A technique which is useful to learn to notice the ant is mindfulness and meditation.

Meditation_A_Way_of_Awakening_-_Ajahn_Sucitto.pdf is a good book to read on this subject. It is a free download from

amaravati.org/dhamma-books/...

The instructions on Sitting Meditation page 21 are highly relevant.

The object is to quieten the mind so that you can focus on the subtleties of the ant's movements. This will take time as there are a lot of new skills to learn.

I could say ensure the head in balance on top of the spine. However, you will not grasp my meaning as I have a subtlety of meaning based on years of looking at the issue. So I am trying to give you the tools to look at the issue for you develop the methods of modifying the tension in your neck that you can apply.

I will stop at this point to enable you to take in what I have been trying to get across.

Hope this has been helpful.

[Mia51 in reply to johnsmith]

Thank you John for all this info,ive always been interested in meditationand mindfullness but never really got round to it.Theres a budhist temple where I live and I was going to go an a weekend retreat.How do you know so much, im intrigued?

Justine

[johnsmith in reply to Mia51]

I took an interest in Martial Arts, meditation and massage over 40 years ago. Got hit by a double decker bus about 25 years ago and walked into the corruption of the NHS. Networked with many people and took a great deal of interest in the area of muscles and the role muscles and mind play in pain and function.

Have A levels in Physical science, biology and maths.

Have Bsc (hons) in Physics which included Biophysics. This means I can network with the local university, attend conferences and generally keep trying to improve my knowledge on the issues that affect me.

Have been a quality and Reliability engineer. So I am in a position to talk about quality clinical data which is thoroughly unreliable.

Being doing Alexander Technique for over 35 years.

So my knowledge is nothing fantastic. It just built up over the years of continual research and experience.

[Duvet]

Hi,

Sorry to hear of you suffering so badly with migraines. About 2 years ago now I was suffering horrendous migraines, that lasted anything up to a week. The longest one lasted 10 days, with that one I got admitted into hospital for just over a week and had all sorts of scans, MRI's, blood tests etc done, to try and find out what was causing them.

In the end it was just put down to being connected to my Behçet's Disease and I have to keep a diary of how frequent the migraines are now. I am on a drug called Topiramate, which does help a lot, but if I feel one starting I can usually dampen it down, before it gets out of hand, by taking a Sumatriptan tablet, two if I need to!! Of course these have to be taken within the first hour in which symptoms start, or a pretty much useless!!

Hope your migraines can be managed and you are able to find a way to spot the signs yourself, so you can then get on top of them like myself and be the boss where your migraines are concerned!! Good luck x x

[pump321 in reply to Duvet]

Hi Duvat,

Many thanks for reply to my first blog recently and for your kind works. I am sorry you to suffer with them badly but seem to have thing under control to a certan extent and can be managed. I am very reluctant to take Topiramate and other preventatives as they seem to have so many awful side effects and I dare not risk making things worse than they already are. What is Behcet's Disease? Occasionally I have a good spell of a few days and think things will be better but it doesn't last for long and I'm back to square one. I have tried Magnesium and Riboflavin, drunk digusting herbal teas from a herbalist, you name it I've tried it. Even buy Gelstat capsules from America which cost me a fortune. Any form of manipulation with a chiropractor or physio. just makes everything worse. I just plod on with the acupuncture which is helping to a point but very expensive. Thanks again for kind words and good wishes xx

[Mia51]

Hi Duvet,I didnt get any joy from topiramate and as much as the triptans help I have been told to limit them to 3 per week as they are not good for you.I get so frequent headaches and migraines that is not enough.Last week I had four days of migraine and I tried taking nothing to stop the rebound headaches but it was hell! Thanks for your advice

Justine

[Frustated]

At my hospital admission in 2013 I was told by a neurologist that I had to stop taking the sodium valproate and take Topiramate, but it didn't agree with me at all migraines we back with a vengeance once of the sodium and on the topiromate!

[Bobcat38]

Hi pump 321

Have suffered 55 years of back problems, and found medication is not the answer,

It rarely does it cure anything only suppress it, have had little help from GPs I began

Studying back problems, I soon found GPs were sadly lacking in knowledge, in this

And other areas, they have little time to an analize your problem and make snap

Judgments, issue medication, which may be totally in apropreate for your problem, And even cause other problems,

The only medication I take is for blood pressure, and I selected that my self

After suffering bad side effects from that GPs gave me,

Finding the root cause of the problem and treating it in a correct manor is the only way,

Having studied back problems for years, I have seen refferance to migraine head aches , Johnsmith, was probably right in his suggestions, And I think your problems could be back related, that includes the neck, the spine carries most of the millions

Of nerves that supply the whole body, a relatively minor problem could be causing your migraine, if you are interested in pursueing this line of thought let me know, and I Will look it up,

Regards Bobcat38

[pump321 in reply to Bobcat38]

Hi Bobcat38

Thanks for your reply to my blog 4 days ago. I have spent the last few days with one migraine after another and have had very little sleep so feeling pretty knocked out at the moment. I cannot operate at all when I have a migraine. I know I have a curved spine which most consultants say is "interesting"! I have seen very good back specialists in my area and they all say it's best to leave things alone. I was offered Cortizone injections which I understand can make migraines worse and may not help my back problem. My facet joints are worn so there's not much they can do. I am not sure if everyone sees this blog as I do need to reply to all the other kind people who have replied to me very first blog recently. I do feel very alone as I don't know anybody else who suffers as badly as I do. I am in bed at the moment and just shut myself away when I am like this. Migraine is hellish and I just wish i had a normal life.

[woodlog]

Like you, I'm a long time sufferer. Rebound headache is inevitable with all triptans and is worse than the underlying condition: the only way to improve things is to stop taking triptans altogether but... life is so difficult to manage if you're in bed with an agonising headache. I've had fourteen Botox treatments which have given me some respite for long stretches but they are not a cure, sadly. All one can do is take care of what one can control: diet, medication, exercise and somehow try to put up with the pain because that temporary relief from triptans will inevitably lead to a massive rebound headache and perpetuate the cycle. There are no easy options.

[Bobcat38]

To pump321 and and wood log, first a story about me, having suffered back problems for fifty five years, and getting know where, with the medical profession, I went looking for answers, at the moment my back is good as I am retired and have an easy time now, I have got seating that gives me good posture, so back wise things are good, but my back problem effects my legs hips and feet, my feet have been getting increasingly numb, not good for driving,

So explained to my Doctor and this time she took notice And I got my first MRI scan,

I suspected spinal stenosis, and so did she, so perhaps we are getting some where at last, sorry to burden you with my troubles

But in my search for answers I have come across, a multitude of hidden effects that

are indirectly related to back problems, I only know of one specialist that followed this

Holistic route, he was a last resort to a cure of a patients problems, he pasted away at 93

A few years back, still attending his London practice right until the end, I have three of his books, your problems may be totally unrelated, but this is what he said,

Problems related to the malfunction of the Stellate ganglion or nerve relay, at the base of the neck, will have to cut this down, as there is a lot involved, but if it sounds like it could be your problem, I can give more details,

The Stellate ganglion supplies nerve impulses to among other things arterial walls, the muscles of which can Restict blood flow, to the brain, if you suffer muscle spasm, which is basicly muscle cramp, this restricts blood flow, and results in accumulation of adema, this upsets the chemical switching of the nerve relays, this results in faulty impulses being sent out, and can result in violent head aches, feeling sick, and can be set of by various Triggers, light, noise, and many more,

The muscle spasm can be caused by bending your neck for prolonged periods

Looking at computers, for instance, or caused by an accident, once in spasm, they

Are not easy to get out of, from personal experience they can be self perpetuating,

A lot of massage, by a person who knows what they are doing, this can involve

A lot of sessions, to ease the spasm and clear the nerve ganglion of adema,

The full story would take several pages, they include case histories of patients

That suffered years of migraine, chiropractors or physiotherapists, Should be able to detect muscle spasm, in the base of your neck,

I have indisputable proof from my own experiences and that of others that mal function of the spalanchnic ganglion, can cause acid reflux, and many other stomach

Problems, try telling that to your GP, they will give you anti acid, have just thrown

Out three boxes, my problem was caused by a trapped nerve, and cured by a chance

Body movement, that release it.

Hope this helps, it may not apply to your problem,

Regards Bobcat38

,

[Lou_inpain]

Hi

I too suffer chronic migraine and find that a daily dose of slow release beta blockers along with 75mg of aspirin really help. Accunputure made mine worse. My consultant said the triptans can cause a headache over time and recommended trying 3 X 300mg of disperable aspirin but to chew them and rub them into the gums. I find that works just as well as the triptans. Also get a good anti sickness drug and keep your fluids up.

They are horrible and debilitating but they will pass.

Hope this helps.

Lou xx

[pump321 in reply to Lou_inpain]

Hi again Lou,

I read your second post before I read that you had send me a reply about you too suffering from chronic migraines. Thank you so much for all your information about beta blockers, asprin etc. I cannot take beta blockers but I can take aspirin. Rubbing them into your gums sounds like a good idea, will try that next time. I've just had 4 days of continuous migraines which just wiped me out. Thankfully I am retired so I can go to bed which is something but it doesn't stop people being demanding and expecting me to always be up and doing things which I find quite pressurizing. They have no idea how debilitating and exhausting it can all be. My sister-in-law knows how much I suffer with migraines and came round Thursday whilst I was in bed. She came back again yesterday and said "you don't look too bad" as if I had made the whole thing up! I really don't think people believe me and that's really hard as I am (like you) not given to making a lot of fuss and I suffer so badly. I too would dearly love to scream and say "I just want a normal life like other people's". but people don't like it if you complain so it's best to struggle on quietly but sadly there's no prizes for be brave and uncomplaining. Those who make the most fuss usually get the most sympathy but not in my case. Hope you are feeling better today, Marian x

[Brumchick]

Im currentl on day 22 of a migraine cluster headache.Its there as soon as i open my eyes and the last thing i feel before i get a few hours sleep.I saw my doc 2 days ago and got triptan meds,but im having few hours almost pain free re headache then im back to start when.i awake .its very difficult to cope with on top of fibro tri geminal neuralgia and very severe m.e.Im at my wits end.i hope we all find some relief soon.

[Welsh-1]

Hi pump321. I to have suffered migraine for over 20 years and tried various medication from beta blockers to preventer none of which worked. I was on Sumitriptan for 15 years but then doc swapped me to zolmitriptan which do work for me but was at one point taking them everyday. I saw a pharmacist in boots who recommended Sundon or boots tension headache relief. I am plaster to say both work for me and gave reduced my triptan medication to less than half. But to be honest it depends on what your triggers are. For me tiredness, broken sleep and wine are my triggers. So you need to keep a diary for a month and record daily food/drink/sleep and days/ times when migraine occurs. Only then will you be able to improve your situation

[Sharbar05]

Dissolve 2 aspirin on a migraine onset if you have no stomach problems

[pump321 in reply to Sharbar05]

Thank you Sharbar05 for your information about dissolving 2 asprins at the onset of a migraine. I was told that at the Migraine Clinic in London and by our Surgery nurse but sadly they give me a really bad upset stomach. I think taking a 75mg dissolvable asprin every day might help but it's not good for the stomach. Thank you for taking the time to get in touch.