Looking for some answers

Brain and nerves
1

Hi guys,

I'm new to this so I apologise if this has been asked before.

I'm 23 and have suffered from migraines since I was 18, not a long time compared to a lot of you guys on here (which terrifies me). Anyway, I've came on here looking for some answers, maybe people to share experiences with, I guess just people who understand what these migraines are like and what they do to your life. I'm the only one in my family, relationship and group of friends who suffers from migraines and because of that I feel like they don't fully appreciate or understand what it's like. I'm not saying they're unsupportive but they've never experienced it to appreciate the sheer hell and intensity of them!

My migraines have always been the same symptoms, piercing sharp pain that starts from the right side of my neck and within 2-3 hours works it's way up and eventually finishes behind one of my eyes. During the 2-3 hour period, I will have projectile vomited at least 3 times (I hate to be graphic but this is not normal vomiting, this comes from absolutely no where with no warning and does not stop), I will have lost all sight in my right eye whilst my left eye suffers on it's own making it unbearable to be anywhere near the slightest bit of light or noise without having to vomit again, I will also have started to gradually lose feeling on the right side of my body, starting at my neck working downwards. Lastly, this part is extremely inferior but for some reason it is the part which bothers and upsets me the most, I start to become confused with my speech. I mix letters in words up - for example - washing the dishes will become dashing the wishes, I will struggle to get words out, I know what I want to say but my brain and mouth either won't say it or will say something completely different. As I said, this part is completely inferior to the rest, it doesn't cause me any pain etc but it is the most frustrating part.

Currently, I am experiencing at least 1 episode a week and have done for around 3 years. Prior to this it would be 1 per fortnight. My doctor is aware and prescribes me with both almogran almotriptan and also beata blockers which I take daily as a preventative but they do not work.

I'm fed up with migraines dictating my life to me, I can never make plans in advance with friends or family because if I have an attack then I am in bed that full day. I'm also at university and have so far this year already missed an exam because of an attack - causing me to have to re sit.

Finally, I'm just wondering if anyone has been referred to consultants by their GP for further tests? My doctor seems content with just giving me tablets and I'm getting to the stage where I need answers.

Any advice, help or even shared similar stories would be most appreciated!

Amy 😊

2

Hi Amy, I do feel for you it is horrendous and extremely debilitating, I too a am a migraine sufferer although mine are different to yours, I have chronic daily headaches with migraine every 7 days that last 3 days or longer, I cannot tolerate alot of drugs which makes it difficult to get them under control, my brother also suffers with them but doesn't get the intense pain but does get auras and loses his speech on occasion he hasn't been able to communicate at all but returns to normal within about 24 hours.

It sounds to me that it's time for you to be referred to a neurologist, gp's are great but there come a time when they also need guidance on managing them too.

I was referred a year ago to a local neurologist and have now been referred the National Migraine Centre in London, check out their website they have info on there that you may find useful and headache diaries that you can print off so you can keep track of your migraines which you can then show to doctors. http://www.migraineclinic.org.uk they are a charitable organisation that receive no government funding, anyone can be seen by them however they do ask for a donation. I'm going this week for botox treatment which I'm getting NHS funding for.

I hope you find this of some use, do insist on being referred to see a neurologist.

And I hope you can get some relief from these awful migraines.

Wishing you well

Diane

3

Hi Amy, I sorry but you won't find this a very positive response, like you I started getting migraines when I was about 17/18 although not as severe as yours. I am now 58. When my migraines first started they were controllable and I only used to get them 2/3 times a year. I used to get flashing lights over my right eye and then get pain over my left eye, but as I said were usually controlled with paracetamol. Over the last 15 years they have got increasingly worse with the pain being in the left side(someone described it as being stood on with stiletto heels) and that's how it feels. No over the counter medication worked, so that's when I started seeing my GP. I now get a migraine about once a week, I feel lucky if I go a fortnight without one. Like you I sometimes get numbness and slurred speech, but it is the pain I find difficult to cope with. The one thing that does work for me is sumatriptan, if I take that at the start of a migraine it usually takes affect within an hour and then I can cope,but if it doesn't work then I am out of action for the rest of the day and the next. My GP has tried everything to try and prevent these, but nothing has worked for me, I have also tried giving up the usual things, cheese, chocolate, caffeine and alcohol but nothing has made a difference, so I was referred, this again proved fruitless, as I was told there were "just" migraines and not worth further investigation. So, was told to try noritripeline again, but after a couple of months it doesn't make any difference and makes me feel groggy and hungover, so my GP tried me on gabapentin which was even worse. This was only in November, so I think I'm just going to except that it is something I've got to live with and just take the sumatriptan as and when. Have you tried it, if not it's worth giving it a go because although it doesn't stop the migraines, it at least allows you to function and get on with life. So sorry if this doesn't help, but I do understand, and it does help to know that others are in the same boat. I get fed up with family members saying it's stress or hormones, that's one of the things the neurologist said, he doesn't believe there is any particular trigger. Good luck to you. Kath

4

Kath,

Thank you so much for getting in touch. You have no idea how settling it is to know that someone is experiencing the same horrific symptoms.

I haven't heard of sumatriptan, are you in the uk or US? Am I able to get this over the counter or does it need to be prescribed like my almotriptan? The almotriptan I take does help, but you can only take one for each migraine attack so if I take one and then throw up, I'm not able to take another maybe this sumatriptan you're suggesting will be better? Has your GP tried you on a preventative? It didn't work for me but everyone is different and it may be worth a shot.

I can't believe that you are still suffering from migraines all these years later, my heart really goes out to you, I really can't imagine having to deal with these every week for the rest of my life.

I know exactly what you mean about friends and family trying to diagnose them with stress etc. for me it's just my families excuse to get on at me more about my weight and smoking (neither of which were existent when my migraines began) and my GP has said that there is an extremely small chance it is down to that. You either have it or not. I'm unsure of your understanding of them but the way my GP has explained it to me is that a migraine occurs when the little valve in your brain becomes closed therefore restricting the blood flow getting through? Do you have a different explanation?

I'm really glad you responded, so relieving (given the circumstances) to know that this isn't all in my head the way people make me feel sometimes and that it is going on elsewhere.

I hope this finds you well and having a lovely migraine free Sunday!

Amy xx

5

Hi Amy,

I wrote a reply on here last night but it won't be posted until the moderators have approved it because I put a website link on it to the national migraine centre in Charterhouse Square London as I thought there might be some helpful info on there for you.

It sounds like it maybe time for you to be referred to a neurologist that will be more experienced in managing migraines.

I too am a migraine sufferer although different to yours, I have chronic daily headaches with full blown migraines every 7 days that last 3 days or more, sumatriptan is the only thing that takes the edge of.

I have had migraines for about 15 years now but have become almost constant recently, I also have fibromyalgia and am intolerant to alot of drugs which has made it increasingly difficult to manage them.

I was referred a year ago to a local neurologist and have more recently been referred to the national migraine clinic in London for help and will be having my first lot of Botox treatment this week as a all else has pretty much failed and there are only so many triptans you can take in a month!

My understanding of migraines is that the blood vessels in your brain are dilated which is where the triptans work by constricting these vessels and lessening the pain, also the muscles in your head and neck become very stiff and the nerves aggravated in and around eyes scalp,face,neck & shoulders, & the brains electrical activity can be all awry.

The consultant I saw in London was very supportive and as he put it it's not the hardware in your brain that's the problem but the software... Well put I thought.

Check out the migraine centre , they have headache diaries you can print and fill in so you have a record to show any Dr's you might see, advice on managing migraines, once I had found them I felt less alone.

It's a charitable organisation ,they don't receive any government funding but anyone can make an appointment to be seen by them however they do ask for a donation.

It sounds like you are already on a triptan although I believe there are different kinds, I take Imigran and an icepack on my head/neck helps a little too.

Do insist on being referred to a neurologist if you feel you need more help.

I hope this helps a little Amy, don't despair (easier said than done I know) you are not alone.

Wishing you well

Diane x

6

Hi Diane!

Thanks so much for your reply. It sounds like you're having a right bad time of it, I really hope you find something that works sooner rather than later. You definitely don't know how lucky you are until you hear someone else's problems so I hope things start to improve for you soon!

Am I able to refer myself to neurology through my GP, I.e ask my GP instead of waiting about on him referring me?

Kath has mentioned sumatriptan, I'm surprised I've not heard of it given it's popularity on here. Are all triplanes the same just different brands or are they completely different? Would be helpful to know that as I have always taken almotriptan so I was unaware of any others.

Thank you for recommending those websites, I have a day off today so will definitely be reading my way through them.

Do you keep a migraine diary? I have been keeping one for 3 years now - I record everything - what time I got up, what I've eaten and drank, my daily activities etc. i keep this every day though not just on migraine days because there was no recurring factor on migraine days to narrow it down to a cause so I now keep record of every day so that I can check back to the days leading up to my migraine to see if there was anything during those times that stand out, nothing has been eliminated as yet which makes me think that it's perhaps a trapped nerve or some kind of nerve ending causing it and not any foods etc.

I'm so glad that you are receiving great treatment although I can imagine the depths you must have had to go to in order to get there, I'll keep my fingers crossed that they find something to help you that will go alongside your fibromyalgia medication smoothly.

I've read online about Botox - it seems incredibly interesting and please let me know how you're getting on with it. I've recently signed up for private medical insurance through my employer and have found out that I'm covered for acupuncture so I'm thinking of trying that - have you tried it?

If I wasn't half way through an accountancy degree I think I would definitely have loved to study neurology, although they put me through frequent agony and heartache I still find migraines extremely interesting and would love to get stuck right in to studying the brain and working it all out.

I will definitely contact my GP this week and discuss a neurology referral, even if they can't help I can at least cross it off my list and say that I've tried.

Again Diane thank you so much for your reply, as you say it is so much more comforting knowing that I'm not alone. Definitely feeling much more positive since joining this thread and hope that at some time I'll be able to return the favour to you

Best wishes

Amy xx

7

Bless you Amy thank you.

Yes you can ask to be referred by your gp, Oh yes I forgot to say that I've been having acupuncture for three months now, my energy levels have been better but not a great deal of change in the migraines yet but my consultant in London was happy that I was having it and although i'm having to pay for it I will definitely continue with it, it can take time to take effect and everyone responds differently. I saw a chiropractor that tweaked my neck & set of the worse migraine that lasted 10 days!

I do keep a diary but like you I can't really pinpoint a trigger, I know stress doesn't help, sleeping too deeply for too long or not sleeping for long enough, headlights at dusk and green traffic lights are hard to look at as are anyone wearing dots or strippy clothing. Reading and computer work for too long, the smell if bleach, these things may contribute to mine but I can never really put my finger on any one at any one time, the consultant said it is probably a culmination of them!

I was given zolmatriptan once that didn't work as well for me, I think the ingredients differ slightly with triptans but they work in the same way.

I also was given the Eneura TMS device back in May that you hold against your head and zap a current through your brain to interrupt the electrical activity, it works for some but not for me. It was worth a try and was drug free. It brought about aura that I don't usually get with mine just maybe twice a year.

Sumatriptan is I believe the most popular drug for rescue medication. It's best to stay clear of paracetamol/codeine based pain killers because of medication overuse headaches which is what I thought I was having after checking out the NMC website and the consultant agreed so I've been off it for 8 weeks now but no change which is why I think its time for botox although am a little anxious about any side effects days muscle weakness and droopy eyelids :0(.....

You really do need your brain to work efficiently for accountancy don't you? I only joined this thread a week ago and am glad I did.

Good luck with the referral

Best wishes

Diane xx

8

Oh codeine is definitely the worst thing to take as you say, they give you an awful heavy headache the next morning!

I COMPLETELY understand the headlight thing!!! I thought that was just me!!! When I'm driving at night I feel drawn to headlights and everyone seems as though they're driving with their full beam and fog lights on - it's bizarre! I try not to drive at night at all as it really sets me off!

You're saying that you were paying for your treatment - try 'simply health' - they're excellent. I pay £11 a month and it covers me for glasses, dental, chiropractor, acupuncture, chiropodist and many other things. Up to £100 a year for each item but you can pay higher premiums if you require more cover. I find it really helps!

Like you I only joined recently too but I've felt that reading everyone's posts and seeing how everyone on here supports each other has given me a great sense of strength, funny how something so small can do that but it's great. It's good to know that other people are going through it with you.

Smells! Oh my god! With me it's anything vanilla (candles, air freshener) but again like you that's only a small part of it. Dehydration as well, if I've not drank anything as soon as I get up and yes definitely agree with the over sleeping. Very strange and interesting ways our bodies have of telling us something's not quite right!

Definitely need my brain for accounting! Have my first exam a week tomorrow and I had a migraine Friday lasting right in to yesterday and my eyes still can't focus on reading without an aura arising.

Thank you so much for sharing your experiences, it's very much appreciated. I will keep you in the loop with my referral and I hope your Botox goes well! You'll feel like a new woman!!

Kindest wishes

Amy xx

9

Oh yes to be a new woman how wonderful that would be, I live in hope !!

Yes reading and concentrating is difficult, I love reading but now use audible books for reading or rather listening to which is great when you get a really good narrator.

The other thing that gets me is when drivers in front of me keep their foot on their break pedal when static, we have a very busy level crossing near us and I'm often sat behind someone blinding me for sometimes up to ten minutes or so! One day I may get out my car and politely ask them to take their foot off because they're blinding me !!

Well I wish you all the best for your exam, relaxation and deep breathing help a bit at stressful times.

I really hope you'll be migraine free for your exams.

Good luck

Diane xx

10

Hi Amy

I've been having migraines since I was in my second year at university. I'm 53 years old now and am still having them. You say you vomit when you have your migraines so it would be a good idea if you took your triptanas a nasal spray rather in tablet form - you could try that. That means that it will work even if you do vomit.

Have you looked at the Migraine Trust website? The website is excellent because it explains all the different medication routes clearly. Triptans worked well for me for a number of years (Rizact was particularly good) but I am now having migraines almost every day so have been put on anti-seizure medication called Topomac which works well for some people.

Like a lot of other people I kept a detailed diary of everything I ate, drank and did for several years but could never work out what triggered my migraines, except for loss of sleep and overnight flights. Although I think what you say is true - bright lights and flashing lights are bad news and I can't even iron my husband's striped shirts!

The migraine trust website lists all the migraine clinics throughout the country. You can then see which clinic is the closest to where you live and ask your GP to refer you there.

Best of luck Amy.

Trudy

11

Aw thanks so much Trudy!

I had no idea that triptan came in a nasal spray but I'll definitely ask for that at my next appointment, that will definitely help as trying to swallow triptans when I feel nauseous can be a bit difficult!

I'm sorry to hear that you are still suffering from them, and I can't begin to imagine what a daily migraine would feel like! I hope the seizure medication works wonders for you and you start to feel a lot better soon.

Best wishes

Amy xx