Long term Chronic migraines

[cat85]

Hi, I am suffer from long-term migraines. In my teens the doctors just threw pain medication at me, but over the years my migraines progressed and eventually they sent me to neuro for an mri after trying numerous first line treatments. Turns out i have two dislodged vertebrae in my neck,( there is a phase for it but cannot remember)

I would come under the chronic migraine category. They put me on topamax 100mg twice daily and changed my reliever to rizatripan. This brought my migraines down to about three "manageable" migraines per week but the black outs disappeared and I was able to return to work.

Again about 9 months later they returned with a bang,every day same cycle black outs dizziness,flu like symptoms so they put they put me on gabapentin as recommended by neuro and over time uped it to 1200mg. It reduced the migraines but I was unable to function on such a high dose so once the migraine settled to again about three per week they reduced it to 300mg plus the topamax and I was able to return to work again.

6months later I'm off again, doctor said they don't know what they are going to do,they have gave me diazepam,naproxen,co-codamol 30/500 for pain said they want to try reduce they inflammation of the blood vessels before they change any medication. I am off work for the third time in three years.

I had laser treatment on my next and acupuncture but no luck, also have withdrawal from food but no triggers.

Any help/advice would be much appreciated as my doctor is pretty useless. They have done all bloods etc. I work in pharmacy so am pretty pushy with them but just want a solution.

[Frodo]

So if you have vertebra problems, might that mean your migraines are cervicogenic rather than classic migraine? Apparently the symptoms are the same. Presumably they don't think there's any treatment for that apart from the laser treatment.

Possibly gentle chiropractic or Alexander Technique might help, if you can afford them. AT is long term and very slow and gentle, not an instant fix. Can help you to manage your neck which may cut down on number of migraines, but is not a cure.

Some people have mentioned having nerve block injections.

[cat85 in reply to Frodo]

I paid for laser treatment and have had very little relief from it, the neuro said that although the two vertebrae could be contributing towards the migraines he doesn't think that it is the full cause? Although I agree and think it's more of a cause than they think.

The NHS have a wide variety of treatment available(I work for them) but due to shortage of funds they do not like offering them, I had to pay for acupuncture, physio, and laser the two first ones I should have been able to get free.

I now cannot drive am reliant on family for collecting children from school and still no rush to get me back fit again. It is a misunderstood condition. Just handing out more tablets without understanding what for.

[Frodo in reply to cat85]

There are so many potential causes & contributing factors. My opinion (non medical!) is that it is very likely to be your neck problems which were an initial trigger (maybe others too), and once you were forced to take so many medications for the pain, obviously they affect your whole body which can have a knock-on effect with exacerbating symptoms or causing new ones. Eg I had severe symptoms caused by aspirin which were thought by doctors to be just part of the migraine until a thoughtful pharmacist alerted me.

FYI, I did manage to have a few sessions of NHS acupuncture, and it was useless: in the first session the physio giving the treatment told me she 'did not believe in acupuncture' and doubted it would work. The sessions were nothing like you would get from a properly trained acupuncturist and only ten minutes long.

I was astonished that the neurologist I saw did not recommend any further tests, after a short conversation he said: it is migraine, take painkillers.

Personally I haven't tried the National Migraine Centre (as travel triggers migraine!) but it looks like that might be a possible next step for you?

[babs1234 in reply to Frodo]

Could I ask what where the symptoms caused by aspirin as I have just started taking a daily .75 myself

Thanks

[Frodo in reply to babs1234]

Dizziness, weakness, feeling faint, nausea, vomiting (once blood) & frequent nosebleeds. And 'burning' sensation in stomach, digestive issues.

[babs1234 in reply to Frodo]

Thanks

[sttickle1 in reply to babs1234]

You bruse & bleed more noticeably - gets you lots of sympathy though .(Don't take if you suffer from stomach ulcers. )

[andersonmrt]

I know how feel, I have also been suffering with chronic pain and I am very desperate for it to go away, if it was not for my partner and young daughter I would be seriously considering my own life because this pain is unrelenting and unbearable.

my doctors have fobbed me off with ' I am depressed' but trust me I know the difference between depression and unrelenting pain that I would trade off for anything.

The pain I have is constant pain down one side of my head and face and eye, and also neck and down my arm. The pain has been present since I was a teenager and now I am 42 years old, and it has progressively got worse and more so since I had my last child over 5 years ago.

During this period I have been in and out of work and until recently ( 18 months ago) I have been dismissed on ill health.

Right now it has been a long journey with no real hope of success for a solution, my neurologists have been partially supportive and I have tried various drugs with no real long term solution to my pain or management of it.

I have an appointment with my neuro surgeon John Radcliffe in Oxford in November and to be honest it has been a long drawn out struggle to get to this stage, anybody would think I was asking for the crown jewels, I only want to get better and try and enjoy my life but it is getting harder just to do simple things and the less I am doing the less I feel worthless for life itself.

I am currently taking Pregabalin 400mg daily which does not really work but of the few days I have that I am feeling better which are few and between and I must stress that the pain never disappears completely but is more manageable than most days. which is supported by taking Dihydrocodeine 30mg, which I take on a good day or when pain is not as extreme. Also I take Triptons every 6 weeks, but I have found that if I take them more frequently ie 3 weeks then they are not as effective. All in all I am in more pain than not, and to put it into perspective, last month I had 4-5 days of feeling good with manageable pain and not feeling I have to go to bed and find solace, peace and quiet. My daughter of 4, must be very confused of not fully understanding how tender I feel and the noise and light that can trigger off pain even more. I cannot even play with her for fear of activating or triggering off my pain even more. ( I am going to bed at the earliest possible chance after taking the Pregabalin 400mg, with an ice pack wrapped around my head, and despite taking the 400mg still unable to sleep due the constant pain which trumps the 400mg)

If I am not drugged up to the hilt or in bed for me this is normal but I know it is not and this life is not what I want to be living, I will move onwards and upwards and hope to share with all how I feel.

Sarah

[Tipperary]

Have you considered surgery? I have had migraines from childhood and last year they went chronic to twenty days a month and kept knocking some vertebrae out in my neck. In April I went to Berlin c/o Dr Muehlberger and had the nerves surgically decompressed and I am happy to report that almost six months later I am fully cured of migraines AND my neck no longer pops out of alignment. I covtacted him through the migraine surgery centre in London. It has been a miracle for me so worth considering.

[Shaan29 in reply to Tipperary]

Hi I am interested to know more about the decompression surgery you had done.

Some questions - what scan(s) did you need to have to diagnose your vertebrae was getting knocked out as you say?

In order to have the decompression did they do any tests to make sure the nerve decompression would work?

And lastly approx cost of surgery and recovery period.

If you have any email address and contact details and further info I would greatly appreciate it.

I am suffering from daily headaches for a year now with tight neck and back of head and imbalance feelings and the specialists have not got to the bottom of this and all medications and treatments to date have not worked and tests have not shown anything.

Regards

Tishaan

[cat85 in reply to Shaan29]

I also am interested as when I was at gp today he mentioned surgery although he did say it would be a final resort. And I don't think it would be covered by nhs

[Tipperary in reply to Shaan29]

Hi. I could feel my atlas bone popping out of alignment every time I got migraine as confirmed by my chitopracter. The migraine causes the nerve to inflame which causes the neck stiffness etc. I did have an MiRI but it wasn't necessary for the surgery - the GP ordered it to rule out any other pathology. Yes the surgery objected 50iu Botox my right temporal and right back of my neck and it showed 50 per cent pain reduction over the next four weeks which is why I was suitable for surgery. I had Botox before to forehead etc but that did nothing whereas I did respond from the surgeons injections - he only injected the areas I felt the pain which was my right temporal and right neck/atlas bone area. Once you feel migraine in the temporal area generally the neck is usually also involved I believe. The cost per trigger point is around 2,000srg and in my case I had two trigger points. You need two weeks off work after the surgery but the swelling at the back of the neck does take about 3months to resolve. I still felt better post op than I did pre op with migraines (if you get my drift). I went out for dinner the same evening as surgery without issue and being pain free although my neck was stuff etc. I hope that helps. I don't think NHS will cover it but in my case it was a small price to pay for a lifetime of no migraine - I would have remortgaged the house etc. I didn't enjoy getting my hair washed for about three months after surgery as my scalp was sensitive but it was also sensitive preop. If you google the migraine surgery centre, London, you should land on the website and then look for the suitability questionnaire etc. The surgeon is fabulous and very easy to contact since the surgery etc

[Janine61 in reply to Tipperary]

So glad it worked for you. I was told surgery wouldn’t help me as Botox didn’t. Was that the same for you? Thank you

[cat85 in reply to Janine61]

I have just received my third treatment of Botox, had to wait over 2 years to receive Botox through the NHS. I am getting 36 injections now. The first set of injections I saw very little improvement and the second I only seen slight improvement in the pain level not in the frequency although I had been warned by the specialist that this may be the case as I suffer pretty badly but I was happy enough if the pain decreased a bit. On this cycle I had to wait slightly longer to receive them so they haven’t really started to work as yet but I’ll be happy enough if the pain level reduces again. I am still taking the topamax bd and pain relief when required. As per surgery it’s not an option for me at the min as they would have to fuse my neck which could actually make things worse.

[Tipperary]

Ps I am on no migraine meds since the surgery.

[Shaan29 in reply to Tipperary]

Thank you for your replies - very appreciated. Will look into it.

[cat85]

Thank you all so much for your replies. I am considering anything at this point, I am off work 1 month without 1 near full day migraine/aura free. It's awful..I am back with gp today for further review but I am fully aware that they are going to up my gabapentin to double and topamax to max level for another four weeks and keep me on the pain relief. No physio will be offered. Neuro has discharged me as I have not reached there 3rd line guide lines which would be to add in amitripyline on top of the meds I am on then they will review after this. It's a joke. I have had 3 readily bad relapses like this in 3 years which I am off for. At least 6 months and suffer 3migrainea per week normally but yet no support. I will look at the surgery option as any light at the end of a tunnel would be fantastic

[Sewnsew in reply to cat85]

Have you been offered Botox?

[cat85 in reply to Sewnsew]

No I have never been offered Botox. My neuro guidelines were first line topamax which I am on 100mg bd, then gabapentin second line up to max dose I had it uped to 200mg tid ( I was on a higher dose previously the last time my cycle was so bad and they reduced it after) and then to add in amitripyline third line if needs be..no mention of Botox. If that all fails I've to be referred bk to neuro again.

Gp do a lot of the ground work. I had a unrelated X-ray 2 weeks ago and they have also found arthritrithic changes in my neck so gp wants to discuss further treatment for that also as well as the two dislodged vertebrae!!

[babs1234]

I was told I had arthritic changes in my neck but was told nothing could be done about it?

[stanners552]

Hi, I started with severe migraine about 20 years ago, i couldn't keep water down and lost about 3 stone in 6 weeks. I take 1.5 mgs of Pizotifen and it helps a great deal, my doctor told me that if this drug didn't work for me i would have severe migraine 24/7 which sounds a bit like you. I still get breakthroughs but only about once a fortnight, still bad but much better than it was at first. I also take 50/300 co-codamol and pregabalin (same family as gabapentin - was on that but it did nothing for me). I take the pregabalin for severe pain i had from cancer surgery in my arm. Pregabalin is much better than gabapentin, they seem to start everyone on that to see if it works so push for the pregabalin if you can.

Hope this helps you.

[teadrinker]

Can you talk to your GP about referral to a pain clinic? I've had chronic pain and migraine for years and have some neck problems. Like you I've been through the merry-go-round of medication that doesn't help, and sometimes makes things feel worse. It's even harder to sort things out when the cause of the problem is either unclear or something difficult or risky to treat like a spine.

It's taken a while, but the pain clinic has looked at everything rather than just focussing on the places where the pain comes from, which is what you tend to get from a neurologist specialising in one thing.

I understand your frustration, especially when the drugs you are told to take don't help, and it feels like you have to jump through hoops to get to the next level of treatment.

[sttickle1]

Can't help you but check that your co-codamol dose not contain aspartame. It has been my downfall. (sorbitol is ok)

[cat85 in reply to sttickle1]

Yeah the codeine in co codamol can cause headaches so I'm trying to use it sparingly and its also very additive. They just keep increasing the gabapentin and am on Max dose of topamax already.

Diazepam is used to rralax muscles at the bk of the neck when they spasm. I'm going to be asked to be ref to the pain clinic as they are very laid back.

I've looked into the surgery route but it costs a lot of money but a life without migraines nearly every day is worth it.

I was fine there for about 6 months having around 3 each week but I was an!e to cope with the pain level and work with these but am now back to daily migraines. I have had minimum a few days break in the past 2 months

[troy04 in reply to cat85]

Before going for surgery, would you consider trying the below two inexpensive options (both):

1) Riboflavin (vitamin B2) 400mg daily : If GP does not write prescription, it can be obtained from HollandandBarrett, they have 100mg tablets, so take 4 of them at a time. But a slightly cheaper option would be to buy from Amazon (Bio-Tech) . Please remember, the daily dose has to be 400mg, no less.

2) Homeopathic remedy : Sepia 200CH - You can purchase from Helios / Ainsworth / Nelsons etc via post. No prescription required and would cost less than £10 including postage. Please buy the liquid (5ml) oral form and take 2 drops (in a tablespoon of mineral water) every Sunday morning. It will take 2 months before you notice any benefit. Please brush your teeth 30m after taking this.

Also, please consider some jogging (20 - 30m) or fast walking every day.

I had horrible headache, and tried all sorts of medicines. After trying these above steps, my headache is now less intense and less frequent.

I hope this will do good for you.

[SouthFloridaLady]

I am so sorry to hear this. Also, I take Topamax (300 mg) and Gabapentin (300 mg) once a day for prevention, and I question if this works. When I get the first signs of a headache I take Sumatriptan or Divalproex, and if that does not work within about one hour or so I immediately revert to me 'life saver' Firocet, which has saved me since I have been getting migraines 50-years ago, from the age of twenty. Personally, I don't think there is anything that they can do except keep trying different drugs. Recently I went to a new neurologist and he wrote a script for Effexor, I asked the ladies on my Facebook "Women's Migraine Support Group" what success they had with the drug and they referred me to a page dedicated to a Facebook page of people withdrawing from Effexor. Who needs that! You just can't have enough information. Keep the faith!

[jaynie35uk]

Have you tried sumatriptan, they were a lifechanger for me

[Hidden]

Perhaps nerve blocks?