Central Sensitisation - Chronic Migraine

Hi

I have recently been diagnosed with Central Sensitisation and Chronic Migrainous State. This is after three years of a range of strange symptoms which I did not understand.

I have always had migraine but it was a certain type of migraine (classical with aura) and I thought that was what migraine was and didn't understand that the strange symptoms I was having were related to migraine at all. Nor did my doctor. Anyway eventually I was referred to the local pain clinic, and my symptoms were instantly understood and I am now being treated.

I have been prescribed Pregabalin (Lyrica) and so far am feeling quite a bit better. Apparently it will take a while for it all to work and get the dosage right.

I just wondered if anyone had any experience of this drug or of central sensitisation.

cheerio.

Hello there

Welcome to the forum - and from Whitstable too

Sorry you are having a rough time and are currently in status migraineous - I was there for 3 years its not fun.

I have not had any personal experience of Pregabalin - but do know its from anticonvulsants family and lots of drugs from this group are used as a preventative in chronic migraine.

Pregabalin is used to relieve neuropathic pain (pain from damaged nerves). It is also used to treat fibromyalgia. It works by decreasing the number of pain signals that are sent out by damaged nerves in the body.

Which clinic / consultant are you with locally?

I am also from Whitstable and the local boys where not able to help, I am now at the National in London.

A lot of people think the aura that comes with classical migraine is just visual stuff - but it can be a lot of others things too - have a look at this list, it might help - https://migrainetalk.forumotion.co.uk/t250-types-of-aura

Do you know the cause of the central sensitisation? I understand there are a couple of different types - I also have Multiply Chemical Sensitiveness and came across CS when I was researching MCS. I have since removed all chemicals and it has helped loads.

I am pleased the medication has started to help and it will take time, a few months is normally needed for the levels to build in the body. In the meantime it would be useful to try and work out your triggers - removal of them will also help.

Tee

Hi

Thanks so much for your reply, and it's nice to know there is someone else in Whitstable! I have had a look at your list of aura symptoms and it is very useful indeed, as are your comments about triggers.

I have been trying to track my progress by making notes, but I am aware that it might not be the best way, and have been thinking about compiling a list and scoring myself daily on each symptom, and this seems to be a mammoth task at the moment. Your lists will be very helpful in doing this.

I know light is a big trigger for me, as are stripes! and anything very high contrast. I have spent most of the summer in massive black glasses. I have many sensitivities, and the specialist has told me that some of them will reduce once the central sensitisation calms down a little.

I have had a really bad day today, and it's hard to make much sense - I have many verbal symptoms, and I was fascinated to see you mention writing problems. I have problems formulating ideas and sentences in writing when I am feeling bad, and also the act of writing. My handwriting goes completely to pot, and I get letters and words in completely the wrong order.

Will reply a bit more tomorrow when I hope I will feel better.

x

Sorry your having a bad day - if it helps I have had a scale 10 yesterday and fell very washed out today too

I understand the sun glasses and can often be seen around town in sun glasses in the middle of winter - I just do not care any more lol

Keeping a diary is a very good idea - most people score just the pain level - but I also score my aura level too. But keeping a diary of what you have done, eat and come in contact with may help find the triggers - It took me years to work out the chemical triggers, so do not give in - take small steps and make small changes - you will get there, it just takes time.

We have some example diaries on here, but they may not be detailed enough - https://migrainetalk.forumotion.co.uk/t223-migraine-diaries But they are what the hospitals use also.

Do not worry about the spelling or words - we all get that to some degree or other - Jane is amazing with it - she can write whole sentences back to front - it a pure skill lol And you know what, we can always work it out

Hope tomorrow is a little better for you

Tee

Hi

It's funny (and probably quite ridiculous in a way) but when I wrote yesterday that I had had a bad day, I hadn't even realised that I had a migraine. I had been very clumsy the day before, had freezing hands and feet, woke up with numb hands, feeling sick and with jangly head, and I was wondering what was the matter. Was it my medication? I had just increased the dose, I decided to go back to bed where I stayed for most of the day, only getting up in time to be around for school home time. I still didn't realise that I was having a migraine. Before the migraine is kicking in, during the migraine, and after I become unable to know things. All the symptoms I was having are known to me, but I wasn't able to know what was happening to me.

The specialist has said to me that eventually the Central Sensitisation will subside and I will just get into a pattern of having migraines, and then I will learn to cope with them.

But when I am so cognitively compromised it is really difficult to keep track, and separate out all the symptoms.

Eventually my GP referred me to the East Kent Headache Clinic. I have had such a long experience of people not understanding me, and me not being able to make myself understood because of the symptoms I have, that it was fantastic to have someone understand what I was talking about and even suggest that some things I hadn't associated with the condition were part of it. I have had two appointments so far, and I feel so much better.

1. Because someone is listening and so I feel there is hope that I will have a life again.
2. The Pregabalin has already helped with some of the symptoms I have am having, such as sleep fatigue and anxiety.

Am feeling better today, but still a bit bleugh.

Will now have a look at the diaries.

x

Take you time hun - no rush

Did you know migraine has up to four stages - not everyone has all the stages. But as the CS goes down, you should be able to tell the day before an attack happens.

https://migrainetalk.forumotion.co.uk/t100-potential-migraine-phases-and-symptoms

Also, you can have a migraine attack without a headache stage - I get really bad aura symptoms and these can be worse than the head pain at times .

I am pleased the headache clinic is working for you - when you get a doctor who understands its worth loads and loads. Is it the clinic in Margate run by Dr Andrew Dowson?

Have they given you any Triptans to help with the really bad days? If not it might be worth asking about them - there are a few different types you can try (ok they are not for everyone) but they can help stop a big one coming?

Have you been given your migraine type? I just wonder if you in the Hemeplgic group as you seem to have a lot of auara issues - its important to know which type you have - ie with HM triptans can be a no no and with Basilar the way you hold your head is important.

https://migrainetalk.forumotion.co.uk/t185-types-of-migraine

Hope these help

Tee x

Hi again,

My bad day last week turned into a bad few days, but started to feel better yesterday, and so far am OK today. Let's hope it stays that way.

Yes, I am seeing Dr Andrew Dowson, and have had two appointments so far. At the first appt I was feeling really terrible, but he made the diagnosis, and gave me the prescription but when I walked out I couldn't remember what he had said, but I was pleased that he instantly recognised my symptom. and was pleased that he at least seemed confident about the possibiilty that I might return to normal.

I took the medication, and overall I am feeling better, I don't have the constant crashing fatigue that I had before and am sleeping better, I just feel a bit more 'normal' some of the time.

I had my second appointment last week and I think he just wanted to see that I was tolerating the Pregabalin, and since I was, I am now slowly, week by week, increasing the dose to 600mg. We had no conversation about my migraine, except that he mentioned about he CS subsiding leaving a migraine pattern. So I expect we will try to identify the type. I had been thinking Basilar before, but this time on Friday I became completely unco-ordinated and kept veering to the left, and so that sounds a bit more hemiplegic I think.

I do indeed suffer from a great many aura problems. Difficulties with cognition (just not knowing anything) verbal difficulties, co-ordination difficulties and many visual disturbances. I get a terrible thing where I feel that my brain and body are split in half and one half is doing one thing and the other half another thing. I feel like my eyes are looking in different directions, and I have problems with vision -- on a good day my vision (with specs) is clear and otherwise it is blurred or worse.

Also get snuffly nose sinus/face pain and wooshy ears. I imaging smells that aren't there and also hate music and am very sensitive to sound. I could go on forever, but I really think I should make a list so that I can track them.

One of the problems of going to my GP about all of this is that the symptoms seem to be different things, and I have been going regularly for three years, about it all and I do feel quite irritated that it has taken so long, and that my life has almost fallen apart as a result of it all, when I could have been treated earlier, if someone had taken the trouble to think about it more carefully. It is really difficult to have the vocabularly to describe what is happening to you, and it was only when I started mentioning words like Diplopia and Ataxia that the doctor started paying any attention. Think I am starting a bit of a rant here.

Changing the subject, was astonished to see on another page here that TESCO is a well-known trigger for people. I have long thought that Tesco was one of my biggest triggers. Especially TESCO in Whistable. I am not even sure that wearing double dark glasses makes it better. I vow never to go there but always end up going in there.

Thanks for listening, and am going to look around the site more now.

x

Sorry the last one took a few days to clear

But Dr Dowson has a good reputation But I know how you feel about GPs, it seems until you 'talk the talk' they do not seem to add it together - which means you have to half diagnose yourself - which when you have problems thinking is a nightmare. Have to say my GP was great (but she was in Faversham) - but it took 3 consultants to get to the HM diagnosis and 3 years! It is one of my bug bears that GPs only get a few hours training on migraine............ grrrrrrrrr Even written to my MP about it and he has written to the Health Minster.

The aura stuff is a pain - I get really bad aura too - and some days it is worse than the pain in the head - but I was told by my consultant that there are medications which can make an impact on aura and we may try them once we have the full results of the Botox. However, my aura did go down with the last lot of Botox, so fingers crossed for this time round too

LOL Tesco Whitstable is a total nightmare for me too - when I am not good I get the food delivered - but I also use it to test how well my medication is working - ie how many isles can I get down before it kicks off lol They did come back to me about the lights they use, but I am not sure its much help.

x

Tee wrote:Sorry the last one took a few days to clear

But Dr Dowson has a good reputation But I know how you feel about GPs, it seems until you 'talk the talk' they do not seem to add it together - which means you have to half diagnose yourself - which when you have problems thinking is a nightmare. Have to say my GP was great (but she was in Faversham) - but it took 3 consultants to get to the HM diagnosis and 3 years! It is one of my bug bears that GPs only get a few hours training on migraine............ grrrrrrrrr Even written to my MP about it and he has written to the Health Minster.

The aura stuff is a pain - I get really bad aura too - and some days it is worse than the pain in the head - but I was told by my consultant that there are medications which can make an impact on aura and we may try them once we have the full results of the Botox. However, my aura did go down with the last lot of Botox, so fingers crossed for this time round too

LOL Tesco Whitstable is a total nightmare for me too - when I am not good I get the food delivered - but I also use it to test how well my medication is working - ie how many isles can I get down before it kicks off lol They did come back to me about the lights they use, but I am not sure its much help.
x

We probably share an MP, mine is J Brazier, I think I will write on this too. I visited my GP this week, and despite my diagnosis from Dr Dowson, he still attributed my problems to other things.

I am really feeling better in a general sense, I generally sleep through the night now which makes a huge difference, and not having the consistent worry of what is happening to me is so comforting. I am definitely having less of the really bad headaches which made me want to pull my head off, and the headaches seem to be shorter in duration, but as you say it is all the associated aura symptoms and feeling wierd and inarticulate.

I used to get the shopping delivered, but find it hard to get organised enough to do so now!

x

Yes indeed it is the same MP - He has sent some nice letters - but I a not sure he will be able to sort it

I a pleased you are feeling better - finding a medication that works is heaven.

Does Dr D write to your GP - mine sends me a letter outlining what we discussed at our meeting and also send a copy to my GP?

Hi

My GP does recieve a letter from Dr D. But receiving a letter, and absorbing its contents are different things!

Thanks so much for your replies and for setting this forum up, there is so much misunderstanding of migraine.

x

So true

And thank you x

Tee wrote:
Have you been given your migraine type? I just wonder if you in the Hemeplgic group as you seem to have a lot of auara issues - its important to know which type you have - ie with HM triptans can be a no no and with Basilar the way you hold your head is important.

Hi, I wonder if you could point me in the direction of more information about this. I am pretty sure that I have Basilar Type Migraine, and after a terrible week am having a good day and feel almost normal. I was pegging out some washing this morning and as I bent down I felt a very familiar pain in the back of my head and neck and felt quite strange. I'm sure this happens quite often and I ignore it, but having what you said in my mind, I took note and tried not to bend down in the same way again. I am steel feeling sort of ok but not quite as good and was wondering if bending down is a trigger?
x

You need to talk this through with the consultant - but a few things could be happening there - it could be basilar or it could be a pressure thing, when I have really bad days I cannot bend down, due to the pressure it causes. Also I think vertigo (often a symptom) can be caused by bending down.

Here is a list of the migraine types - https://migrainetalk.forumotion.co.uk/t185-types-of-migraine

And this is more in depth details
http://en.wikipedia.org/wiki/Migraine

Hope they help?

Tee

Thanks for your reply and the links, I'm not so concerned with identifying the type of migraine I am having, but was just interested in the point you made about 'the way you hold your head' being important.

I am desperately trying to avoid and identify triggers at the moment, and so wanted to make sure I was holding my head in the best possible way.

x

Got you - Even if its not Basilar, the neck is very important.

Good luck with the trigger hunt - do let us know how you get on?

Hi

What I was wondering was how do you need to hold your head/neck?

Thanks
x