Hi, newbie from Wolverhampton, UK

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Hi, newbie from Wolverhampton, UK

Post by *Steph* on Sun Aug 05, 2012 9:18 am

Hi there,
Well I am Steph and I am from Wolverhampton.
I had my first migraine at the age of about 13 and then had very few attacks until about 4 years ago, since then I have been having attacks every few weeks and they are taking a vairety of different forms, I am getting them so frequently at the moment that I am worried that I might lose my jobs as I am constantly having time off work as I am unable to do anything during an attack. My last migraine was so severe that I was taken to Hospital and had to have a Lumbar Puncture as i had symptoms of meningitis. I have frequent upset stomachs and have been told by my GP i am likely having abdominal migraines as well as 'normal' migraines.

Thought that it would be nice to come on somewhere like this and get in touch with people that also suffer from migraines as i dont really know anyone who gets them and feel very isolated by this. My mum has the occasional migraine (one every 2 years ish). But have never really known someone who gets them as often as i do.

Also got a question for anyone out there who might have had a lumbar puncture. I had mine on Wednesday and now (Saturday) i am still having a really bad headache, and find it difficult to focus on much as find my eyes cant focus (luckily i can touch type!) is this normal or should i see my GP??

I look forward to getting to know you all
Steph xxx

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Re: Hi, newbie from Wolverhampton, UK

Post by Sarah on Sun Aug 05, 2012 9:29 am

Hi Steph and welcome.

I can't help you on the lumbar puncture, but I did want to ask you about the stomach issues, as I get these too. My stomach goes into stasis when my migraine gets severe, which is quite common, I think. Basically, I feel progressively more sick, as my stomach slows down. I take a Motilium (over the counter) with my triptan, which resolves the stomach problem, by emptying it (and consequently causing the triptan to be absorbed).

When I've spoken about this to doctors, they always call it abdominal migraine, but I think that is something different that mostly children get. I'm obviously no expert, but I just wondered if that's what you have, and if you'd tried Motilium, if so.

I can definitely relate on the work front, as I had to give up work a few years ago now. Sad I must admit that, although I miss work terribly, I really don't miss the worry of how many sick days I was taking, or the feeling that I must drag myself in to work, despite my throbbing head.
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Re: Hi, newbie from Wolverhampton, UK

Post by *Steph* on Sun Aug 05, 2012 9:37 am

Thanks for the reply. I thought that my employers would be understnding because of the area that i work in, but they have requested information from my GP and i am currently on a verbal warning from them, and due to be reviewed in 2 weeks, I have been off all week after being admitted into hospital. I enjoy my job, but sitting in front of a computer screen all day with very little chances of a break isnt going to be helping one bit.

Abdominal migraine is common in children but can also be found in adults although it is rare. my GP is currently treating my with medication for IBe (peppermint oil and buscopan) which is working but if i forget to take a single dose i am as bad as ever!!

Neurology is being helpful and currently am having my dose of pizotifen is being increased on a weekly basis and am on maximum strength of Propanolol. The pain is constant and have had a headache non stop for over 2 months now. Somedays are worse then others. Have had a CT scan on Tuesday and there is nothing obvious that is causing the pain which is good.

I also suffer from epilepsy which is currently dorment (as drs say) i havent had a seizure for 7 years.

Is it possible to claim benefits such as DLA if you suffer from regular migraines, even if you are on medication. ( i am wanting to explore all possibilities incase things go bad with work)

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Re: Hi, newbie from Wolverhampton, UK

Post by pīwakawaka on Sun Aug 05, 2012 8:22 pm

Hello Steph and a warm welcome

As a teenager and into my 20's I had severe nausea with my migraines - the nausea lasting several days. I seldom vomited, but I'm not sure which was worse - the head pain, or the knot and churning in the stomach and oversupply of saliva in the mouth. These days I'm only likely to get nausea if my head and stomach are at the same elevation during a migraine, and then only rarely.

As far as the lumbar puncture goes, I've had these after being admitted to hospital as a result of migraines. According to the hospital discharge documents, these have been labelled "unsuccessful" and don't give a reason for why the process was attempted. I can't say that I've noticed any after effects, but I do have some unpleasant memories of painful sensations in various parts of my anatomy during the process affraid

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Re: Hi, newbie from Wolverhampton, UK

Post by Katie on Mon Aug 06, 2012 6:03 pm

Have a look on something called a 'spinal headache'. These can occur when the spine is punctured for a lumber puncture, spidural or spinal block.

If you try doing too much too soon then you can easily set one off.
If you have had symptoms of a spinal headache for more than 24 hours see your doctor ASAP.
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Re: Hi, newbie from Wolverhampton, UK

Post by *Steph* on Tue Aug 07, 2012 1:10 am

Hi there,
thanks for the warm welcome and also for the information. I am still bad 5 days after the procedure, I am off to see the GP tomorrow so will speak to him then, my biggest problem is my job involves sitting infront of a computer screen all day, so think i will have to speak to the dr about what to do about work, I am also looking for a job that doesnt involve being infront of a computer all the time.

I have been trying to take it easy since coming out of hospital but i find it difficult to do nothing, the pain is much worse when sitting up but I find it difficult to lie down all the time.

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Re: Hi, newbie from Wolverhampton, UK

Post by *Steph* on Wed Aug 22, 2012 6:42 am

Just thought that I would give you an update, have been to see the GP and he has been really helpful with finding out what is causing the migraines and also making sure that i find the correct treatment,

Have now had a headache for 4 weeks solid so think that it is time to come back to the GP. Also i went back to work today and people have noticed that my movements and speech are slower then normal which means that i need to see the GP asap.

Feeling really low at the moment as i am tierd all the time and find it difficult to complete simple activities.

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Re: Hi, newbie from Wolverhampton, UK

Post by Katie on Wed Aug 22, 2012 8:56 am

Ask your GP to refer you to the Headache Clinic at City Hospital Birmingham.
Its the only specilaist headache clinic in the W.Mids. Sounds like you need to get access to a neurologist who knows about headaches and other neurological dosorders.

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Re: Hi, newbie from Wolverhampton, UK

Post by *Steph* on Wed Aug 22, 2012 7:56 pm

think that is what i am going to do, cant get to see the GP till next week so will see how i cope until then.

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Re: Hi, newbie from Wolverhampton, UK

Post by Colin on Fri Aug 24, 2012 11:34 am

I had a similar problem with frequent migraines affecting my work a few years ago. The pressure of my employer not believing I wasn't well enough to work compounded the problem. My employer eventually insisted I saw went to see an occupational health officer at my local hospital, who subsequently verified I was not well enough to work. He suggested I saw a neurologist, which my doctor finally agreed to, and who diagnosed my migraines and gave me a written statement about them that I then gave to my doctor and employer. Although my migraines still got worse (repeating between 5-7 times a day) and although I was still worried about losing my job, at least I no longer felt as if I was being treated as if I was dishonest. My migraine state eventually led to me being unable to work for over a year and a half, and receiving long-term treatments. It was only at the time that I was finally able to start part-time work that I found out that chronic migraines are classed as a disability. If only I had known that much sooner! I would recommend speaking to a disability advisor at your local Job Centre to see what your rights are. After a couple of years of having migraines between once a year or once in 6 months, mine have increased in frequency to 3 or 4 a month. Although my current job ends in 4 months, I'm now worried about applying for my next job and really do dread the thought of going through a similar experience. I've just got to the stage where I'm no longer trying to work through it all, but taking a whole day off to try to make a better recovery before my next migraine starts. I have also moved house and am worried that my new doctor won't understand - I haven't even been to see them yet as I don't want to have to 'battle' to get taken seriously again.

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Hi, I'd like to introduce myself!!

Post by Lesley anne on Mon Aug 27, 2012 8:40 am

lol! Hi everyone!! My name is lesley anne and I am 42 years young from Glasgow. I have looked at the forum many times and I wish you all the very best. Do I know what it feels like to get migraines!!! I think I have several different kinds which are changeable, two are distinctive, one being hm both sides and ice pick right side. For me the weirdest was getting the auras without the headache, that really threw me, that had never happened before. It was the25 th July, got tingling in the tongue (that was new too) then the next day got the visual zig zag. This is where it goes pear shape, I didn't take a Triptan as I thought you needed a pain, soo stupid!! I have spent the last few weeks getting over left side weakness, then right side weakness, then motor issues, then nausea and vomitting. I still have incredible body heat , sore hands, wobbly legs and severe depression and overwhelming anxiety. I have seen my gp and A&E several times, keep saying complex migraines with depression. Why do I feel so I'll?? I am really scared and this has been the worst attack I have ever had. Had migraines since I was 16 years old. I cant sleep, at all and I have been really grumpy, emotional and not pleasant to live with. Felt really 'wired' for a while, head is clearing but auras aren't. I am having headaches ( without the pain) nearly every one to two days. I can tell by the auras, goosebumps, nausea, sound and smell issues and the heat, and motor probs I'm having. Got an appt with neurology on Wednesday. Need to look at meds.. Currently using propranolol, fluoxetine, almotriptan, and other pain relief such as diclofenic or cocoa mol. Nothing shifting these auras though!!! Thanks for reading and listening. Really appreciate it as we are all in the same boat, one way or another!!! Still making myself get to work and uni, but I'm struggling.

Lesley anne

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Re: Hi, newbie from Wolverhampton, UK

Post by Colin on Mon Aug 27, 2012 9:32 am

Hi Lesley, Sounds like you're really having a terrible time of it. I know it can be scary not knowing when the migraine will finally go away, especially when you're really suffering and get such unexpected and strange effects. All I know from experience is that getting stressed out about it all just makes it worse, and it will clear in the end. When I started Uni I went through an 18-week chronic episode with a continuous variety of auras including the 'Alice in Wonderland' effect (during a conversation with my lecturer, whose nose got so big it seemed to almost reach his chin! - at that stage I thought I was going really bonkers!) Well done for still managing to get to work and Uni! Try to take some time out to rest and recover, eat and sleep as regularly as you can. I'm not always so good at this myself and get frustrated when people around me forget that I'm still ill and can't magically be well again. Hope it all goes well with the neurologist on Wednesday.

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Re: Hi, newbie from Wolverhampton, UK

Post by Lesley anne on Mon Aug 27, 2012 10:10 am

Hi Colin, thanks for your reply!! I could imagine the whole nose episode was something else, eh!! I forgot to mention the hallucinations of weird cold sensations that I feel. These go on at my arms and face. Your right though, getting sleep is important but I am finding this so difficult. I have got myself into a wee cycle of anxiety about sleeping as I'm afraid of the nightmares and I literally woke myself up the other evening arguing with myself. As I said, I'm finding the last four weeks on this migraine roller coaster very bizarre. I am trying to understand why this episode has been bad and I feel the last year has finally caught up with me in terms of trying to deal with my mother's unexpected passing and how I have looked out for others and neglected myself a bit. Anyway, thanks again for your cheer and I hope the appt on Wednesday goes positively too. Need to believe there is a way out of this upset. Take care.

Lesley anne

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Re: Hi, newbie from Wolverhampton, UK

Post by Colin on Mon Aug 27, 2012 10:52 am

Hi Lesley, i'm new to this website too, just stumbled on it really. So good to know I'm not the only one who experiences these awful migraines. I got so used to feeling alone with it all and get tired of explaining it all to people who don't really know what it's like. I get really cold, too, just before I get a migraine. I'm so sorry to hear your mother died last year. No surprise you've been feeling so down. Even more amazing that you've held down your job and still at Uni. During the last chronic episode I went through five friends of mine died within 3 months and I was being harassed at the time - I couldn't work for a year and a half and then only part time for the first 6 months. Take it easy on yourself, you're doing very well considering what you've been going through.

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Re: Hi, newbie from Wolverhampton, UK

Post by Lesley anne on Mon Aug 27, 2012 1:17 pm

Hey Colin, sorry to hear about your bad time too!! It's not right to be picked on by others, how dare they!!!! I hope things are better now in terms of that subject. I currently work in community care supporting individuals to be independent as possible. This can be quite challenging, last week was especially fraught and when I lost the ability to even think straight and find words it was all a bit of a panic!! It took me at least ten minutes to find the word, report, in my head. I couldn't believe it, kept repeating the sentence that I wanted to write and would stop before that missing word until it came. Even then I still thought it wasn't the 'right' word. I'm thinking to myself, how am I gonna cope back at uni??? I've got to give presentations and stuff. I study criminology and I'm trying to complete my thesis on women offenders who committ heinous crimes, in particular towards a certain victim typology. So when I start saying the old' Glasgow favourite ' you know what I mean??' all the time, I look a right plonker!! Work wise, I work two 24 hour shifts one after the other, with a sleepover (what a laugh), I don't sleep, spend my time pacing the floor or trying to relax in order to nap. The guy I support likes his central heating, which can trigger my headaches, especially during the night and needs heavy support when it comes to cleaning as he is a hoarder. Makes me think of a ll the dust etc. Gonna bring this up with the headache specialist on Wednesday. Hope you have a good sleep Colin, I'm soooo envious ( sigh). U don't sound like a cave dweller, if it makes you feel any better, I like to cosy my house down which really means curtains are shut, place is quiet with tv low and just chilled. I like it like that all year round!! Ta ta for now

Lesley anne

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Re: Hi, newbie from Wolverhampton, UK

Post by Colin on Mon Aug 27, 2012 7:31 pm

Hi Lesley, I often have problems with language / words with migraines, too. Sometimes it's as if my tongue has gone to sleep and I can't pronounce words, other times I can't think of the word but can still describe what I want to say. Recently I developed a stutter during an attack and had to ask a colleague to read a document out for me as I couldn't make sense of the sentences visually (so glad they were so supportive!). I've also had the incredulous looks from people when these kinds of things have happened to me at important meetings! My sleep pattern goes out of the window when my migraines get more frequent. Things that have sometimes helped for me include drinking warm milky drinks, porridge, chamomile tea, stopping caffeine. Even if you can't sleep, it's important to get physical rest. Your job does sound like a major contributing factor, and a bit of a health and safety risk whether or not you have migraines.

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Re: Hi, newbie from Wolverhampton, UK

Post by Lesley anne on Mon Aug 27, 2012 7:44 pm

Morning Colin, well, that was another night of dozing and not much good sleep. I'm all nauseated and yucky but I will need to pull myself together to get ready for work. Thanks for the suggestions re foods n stuff to try and help me. I've not got much of an appetite or anything just now but I am aware I am the main person who can make me feel better!! Interesting to read issues such as sound and smell triggers. Boy do I get those!! Regarding sound, it seems to get louder for me and I can hear every conversation going on around me, which means I need to leave shops etc. have left a few trolleys in my time. I have noticed those air freshners that you plug in can make me nauseated plus deodorants of a certain type. Very bizarre. I literally cannot be bothered, but........!! Have a nice day Colin and take care. Gonna try some green tea!!

Lesley anne

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Re: Hi, newbie from Wolverhampton, UK

Post by Colin on Tue Aug 28, 2012 4:18 am

Hi Lesley, I experience aura similar to those you talk about. It is so great to find that other people have similar things happen to them. It helps piece things together. I've also had those embarassing moments at meetings when I can't find the word for something (even though I could define it using other words. Recently I had developed a stutter (which I've never had before!) and although I could read out a whole sentence, I couldn't make sense of it at the same time! I had to ask a colleague to read the document out for me so I could listen to it instead and I was fine! I've had similar experiences with hearing what everyone is saying, but unable to hold a conversation with anyone. Have you had time to think about exactly what you want to ask your neurologist? Writing a list can help. All the best.

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Re: Hi, newbie from Wolverhampton, UK

Post by sarlyka on Tue Aug 28, 2012 4:51 am

Hi,
I have the word finding problems and also actually saying the words. I have to speak very slowly and deliberately - as if I'm drunk! I struggle to hear what people are saying. All noises seem to merge into one and I can't think if someone is talking to me. I also yawn a lot.
I don't get this before every migraine. Usually, I just wake up in the early hours of the morning with migraine in full flow.

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Re: Hi, newbie from Wolverhampton, UK

Post by Colin on Tue Aug 28, 2012 6:41 am

Hi,

Sometimes my tongue and the roof of my mouth go numb and can't say words cos my tongue has gone floppy and I start salivating. I also wake up with migraines sometimes..

When I was a kid I had them almost every night, just before I fell asleep, then woke up unable to do even clear my throat because of the almighty headache. I remember walking to school in pigeon steps in excruciating pain.

I seem to get them at any time of day or night now and the headaches are less excruciating.

Migraines also make me yawn, I just put this down to the impact it has on you physically.

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Re: Hi, newbie from Wolverhampton, UK

Post by Lesley anne on Tue Aug 28, 2012 12:39 pm

Hi Colin, hope you had a better day than me. Long story!!!!! I've a fair idea what I want to ask the neurologist, especially, about medication as I am now confused.????? My own doc, who I had to see today after I had to leave work through feeling panicky and anxious, was telling me to cut out the triptans. I was under the impression you had to take these in order to try and stop/ end?? A migraine from progressing. I'm getting that I need to take at least one almotriptan a day due to visual auras, nausea, smell and sound aura, with sensation issues. This on top of my usual med, ie, propranolol as a preventive and anxiety med. goodness knows, so I will be asking him about these issues, triptans don't always work for me. I feel as if I have had a really weird migraine rolling for four weeks now, so I want to ask him about that. I'm sure he's heard a lot more different than mine. I also fit the pattern for fibromyalgia, so I would like to know if that is neurological or muscular input to double check. Really I'm needing a lot of reassurance, I feel like a nuisance just now but I can't help how I have been feeling due to taking this migraine. I was interested to read issues such as migraine and depression and such like as I feel my emotional health has been somewhat compromised by this particular episode. I'm normally quite bubbly, not so just now. I suppose I will find out..... It was interesting to hear about your issues re your mouth, as my experience of that four weeks ago was the first I had ever experienced that aura, so it's gave me a fright. I wonder what happens that makes our migraines change?? Hope you had a good day, I'm trying to find some place that I can doze and fall asleep, be peaceful for a while. Nite nite n take care.

Lesley anne

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Re: Hi, newbie from Wolverhampton, UK

Post by Colin on Wed Aug 29, 2012 9:28 am

Hi Lesley Anne, Hope you managed to get some sleep. Glad you're getting you'r list ready. Just reading around people's comments re different drug therapies. I've only tried sodium valporate but not sure if it really did anything but make me feel weird and pile on weight! I've only been to one neurologist who diagnosed chronic migraine and who I felt actually understood my symptoms / aura. I was so thrown that he could have prescribed anything and I'd have said yes! I'm used to having battles with doctors who don't understand the condition, and even then, often have such limited knowledge or experience that they're not much help. Also, my mother had HM migraines and was prescribed just about every anti-depressant and drug therapy going - don't know how she managed to get off them all! Looking back now, and knowing what it's like to have chronic migraines, I wonder if many of the weird experiences she put down to the drugs were actually her auras. I'm really beginning to piece things together re my own auras now! Just wish I was a bit better at recognizing some of them at the time rather than identifying them in hindsight - for instance, blanking out... I remember my mother often just going into a daze as if she wasn't really there then suddenly she was back with us. I do the same sometimes when my migraines are getting really bad, just hadn't realised that's what it was.
Sleep well.


Last edited by Colin on Wed Aug 29, 2012 9:54 am; edited 1 time in total

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Re: Hi, newbie from Wolverhampton, UK

Post by Lesley anne on Wed Aug 29, 2012 9:46 am

Evening Colin, I'm really nervous about tomorrow. I was in bed at nine cause I was really tired and now I've woke up shaking n feeling like crap. Thought I had some weird auras earlier like my bottom lip tingling and some ice pick moments around my right eye. I feel really shaky tonight too with burning skin?? Don't know if anyone else gets that. It defo sounds like your mum had a lot of weird different sensory auras. I don't think the medical profession can detail exactly what goes on for people concerning these auras, it's very unique to that person and like you, I am glad that I share some similarities with others like yourself as that alone can be reassuring. Hope you had a good day and I will let youz know what the doc says tomorrow. Nite nite n sleep tight!!

Lesley anne

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Re: Hi, newbie from Wolverhampton, UK

Post by Colin on Thu Aug 30, 2012 8:15 am

Hi Lesley Anne, How did it all go?

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Re: Hi, newbie from Wolverhampton, UK

Post by Lesley anne on Thu Aug 30, 2012 10:23 am

Hi Colin, I went to see the neurologist today, explained how I had been feeling since July. Basically he changed my meds to duloxetine, said they would really help with the auras and low mood. He said that all the other neurological auras and sensations were due to the migraines, and that I was gonna have to try and find ways to live with them. He asked how often I had been off work due to them, I had said in over twenty years I had managed to get to work, however, I was now finding them soo debilitating I don't know for how much longer. I then spent some time with the specialist nurse, discussing my health anxiety and stuff. To return in three months to see them. How was ur day??

Lesley anne

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Re: Hi, newbie from Wolverhampton, UK

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