Headaches & MS?

[Christina]

I was just wondering what members think about headaches being part of MS. I've had migraine-type headaches for years. The headaches tend to last several days, are relieved by overnight sleep and then return again the next day. They usually worsen as the day progresses and are always made worse by heat, and often are triggered by having a shower. They definitely started after I began to get vertigo attacks and dizziness about 12 years ago. There seems to be mixed opinion in the stuff I've read about the relationship between headaches and MS. Be glad to know what others think and your own experiences.

 

Chris x

[linds]

Yes same as you. If fact my working dx was migrainbe at one time thing is I got only minor headaches but loads of visual stuff. Some neuro's know nowt!

[Dianni]

Hi Christina.

 

I definately think headaches are part of the MS symptoms. Having had one for most of today and paracetamol not shiffting it, I took my preglabin (sp) and within 30 mins my headache has gone. It could be a coincidence but as preg only works on neuro pain I do think the headache was neurological rather than a usual headache.

 

Shame the docs cant give me a tablet that will help me to stop rambling and be more concise

 

hugs

Di

xxx

[Lindyloo]

Hi Chris

 

Yes i get horrid migraines but i associate them with my hormones and have kept a diary of my headaches..... 2-3 days before my period is when my migraine starts and can lat about 2 days.... its always at the side of my head and i have to put an ice pack on it - it helps.... I take ponstan 500mg and panadol and lots of water.... I also get this headache during ovalation... ouch...

 

If the shower aggravates it Chris - makesure the water is not too hot.... have just warm showers.... I cant touch chocolate during my headache episodes....

 

Love Linda

[Christina]

Thanks guys for your responses. It's good to hear I'm not the only one who has these heads, but I'm sorry for those who do. I can virtually pinpoint dates in my diary before my period when I will get one but I also get them at other times. Funnily this time I have missed a period - maybe age, maybe in response to steroid treatment (?) - and I must say the headaches have returned with a vengance! Hot weather doesn't seem to help either.

 

Lindyloo - this morning I turned down the temp a bit on the shower and we shall see if I get a headache later.

 

I start my Avonex injections on Wednesday - eek! I am bricking it now - thought I'd be Ok but as the time has got nearer, I am really starting to wind myself up about it. It's the injection and the side effects that are bothering me. I was glad to hear that Anna hasn't had many side effects but what do I do if I get them really badly. Reading the internet on other ppl's experiences doesn't help either - some people report vomiting as well as 'flu symptoms.

 

I need to calm down really! !

 

Chris x

[Hezza]

I start my Avonex injections on Wednesday - eek! I am bricking it now - thought I'd be Ok but as the time has got nearer, I am really starting to wind myself up about it. It's the injection and the side effects that are bothering me. I was glad to hear that Anna hasn't had many side effects but what do I do if I get them really badly. Reading the internet on other ppl's experiences doesn't help either - some people report vomiting as well as 'flu symptoms.

 

Bless you hon. Please try not to panic yourself - of course you are nervous but you really can't have any idea of what side effects you'll have until the deed is done and winding yourself up won't help.

Has your nurse advised you to take an Ibuprofen tablet about an hour before the injection? That way it will have started to take effect before you do the jab. I do this and then take paracetamol on my way to bed. Normally nothing else is needed.

 

Will be thinking of you on Wednesday

[anna derbyshire]

Hi Chris,

 

Like Cara said, the first thing that came into my head was also "bless you hon"...I know absolutely why you are getting stressed re the avonex...it has been a long time waiting for you, and its easy to wind yourself up about it all-this is also the thing with MS as a whole i find - it is bloody scary as hell!!!

 

do take a painkiller beforehand - i am actually on tramadol, so i find that helps, but a couple of ibuprofen will do the job.

 

is your first injection with your MS nurse? mine was, to "train me up!" so, i was also dead dead nervous before, but i promise you, cross my heart and hope to die! that it wont hurt and afterwards you will think "was that it??!!"

 

I actually had my first side effects on Friday - i think it was cos i was late to bed, and i would normally sleep through it, but i had shivery body - my teeth would not stop chattering!! and achy body, and really bad headache all over my head...thought i had swine flu!!

but the next afternoon, i was fine again, although in the morning i still flet a wee bit funny, not quite right...strange to have side effects 5 weeks into the avonex, but, hey!

 

do let me know how you get on my love, wishing you all the luck in the world

 

Anna x

[Christina]

Thanks girls for your words of support and wisdom. Can I take you with me to hold my hand on Wednesday?! I don't honestly know if this is just a teaching session or whether I will actually have the injection. Have left a message on my MS nurse's answerphone to find out! My husband tells me to stop going round and round the 'what ifs' in my head. It's good advice but I'm not finding it easy to do that.

 

You know, my neuro said - 'you should be fine with the injection - you're a nurse!' Yeh, but a nurse who's only ever injected other people not herself and it's a completely different ball game!

 

Watch this space for further instalments - I shall need your help again there's no doubt about that.

 

Ooh and can I just ask what is the best time to give yourself the injection - early or late evening - to avoid feeling the side effects?

 

Chris x

[gillshutt]

Re the migraine/hedaches it looks like that might be what I'm experiencing and it would explain a lot of weird symptoms I'm getting. It also seems to happen if I don't take my anti-inflammatories so may be something to do with the OA in my neck flaring up... I dunno maybe I'm just weird Good luck with the appointment ((xx))

[anna derbyshire]

Chris,

 

I always inject either early or late in the evening, so i can sleep through any side effects.....I also do my injection on a friday so i have the weekend to recover if i need to!!

 

It probably will be your first actual injection, mine was....although if your nurse hasnt asked you to bring a syringe with you, then maybe not....

 

In theory, I agree with your hubby to try not to focus on the "what ifs" but my god, that is such a difficult thing to do.....! I have so many awful thoughts swirling round and round in my head all the time - just cant turn off!!! arghhh! drives me mad...

its specially bad when i am trying to go to sleep, so i try everything - counting down from 1000, focusing on positive things in my life, deep breathing etc etc!!

 

Listen Chris, do do ask ANYTHING about the avonex - i probably wont have a clue, but i can try!!!

 

Anna x

[Christina]

Thanks Anna, I will be asking there's no fear of that! I think I am having the injection on Weds - I'm supposed to bring the Avonex so that must be why!

 

I'll let you know how I go.

 

Chris x

[bangers]

I've been getting headaches for over two years now. In the same place, dull and persistant and more noticable in the morning. Sometimes real bad in the morning but different from a migraine as those happen in the afternoon and are not in the same place. Its one of the reasons why I was referred to neuro. Pills don't do anything, well at least the ones they have given me. So I push on with it. I wonder if when i get my next appointment they'll try something else. Until then I'll limbo, limbo!

 

Bangers

[Lindyloo]

Aww Chris.... wish i could make u a nice cup of tea....xx(((HUGS)))

 

I think well done you for having a go with the injections... It is a nerve racking time, i remember it all well....

The 1st injection had me so so anxious before it... like Anna says you say after "what was that" the brill thing about Avonex is you dont have to inject until a full 1 week again YAY!!

Everyones story is different as we as people are so different so dont let a someone elses bad experience put you off.... You might not get any side effects at all...and if you do tell yourself they will go away shortly - a good nights sleep and a few panadol and you will be fine .... thinking of you

 

Love Linda xxx

[Christina]

I just spoke to my MS nurse and she said not to take any pain relief tablets before coming for the injection because it will mask how much the Avonex actually effects me, but to take something as soon as I start to feel groggy - if I do.

 

I will be doing the injection myself tomorrow, not her - well I say that - I can live in hope

 

Have been spoiling myself today - haven't given a monkey's what I've been eating - chocolate, ice cream, crisps!! Haha - naughty eh? Oh, but I did have a few raspberries and some orange juice just to balance - who am I trying to kid!! So much for controlling my MS with diet.

 

Chris x

[Lindyloo]

Good luck tomorrow thinking of you!!!

 

[Dianni]

Hi Hunni.

Hope everything goes well today

 

Hugs

Di

xxx

[Hezza]

Good luck today Christina

[Michelle]

Thinking of you.

[Christina]

I did it !!! It was OK and I did manage the injection myself. I didn't dart it in, I just pressed it gently and it went in without any trouble. Now to wait for the side effects to kick in - how long guys on average? I have a mild headache but I had that before I went so not sure it's the Avonex. Have taken some ibuprofen anyway and will have to wait and see.

 

Phew!!!!

 

Thank you for all your support - I don't think I could have made it without you!!!

 

Chris x

[gillshutt]

Well done hope the side effects are mild or better still none existant ((xx))

[anna derbyshire]

OOOOO OOO, WELL DONE CHRIS!!!

 

hope you are proud of yourself!!

see it wasnt too bad after all! and, YOU DID IT YOURSELF!! wow! i didnt the first time, my MS nurse did it! so you are a step ahead of me, hoorah for you!!!

 

it definately is the build up that gets you anxious isnt it?

 

I think the timing of the side effects can vary....but i have only had one lot of side effects, and they took a good few hours to come....probably 3-4 hours.

 

so nice one Chris!!

 

keep us updated!

 

Anna x

[Christina]

Thank you Anna and Gill. I'm sure now I've cracked it, all will be fine the next time. I'm going to change the day to a Thursday evening though so hopefully any side effects won't affect the weekend. My daughters are both here at the moment - one back from uni and the other on a gap year - they are going to look after me today, so that's lovely! I shall take things easy as advised by the nurse, especially as having the injection so early in the day I'll probably feel the effects more.

 

Chris x

[Lindyloo]

VERY WELL DONE CHRIS!!

[anna derbyshire]

Hi Chris,

 

just wondered if you had any side effects from the avonex??

 

hope not!

 

Anna x

[Christina]

Thanks for asking Anna. Mild headache last night and felt a bit weary and lightheaded but not much else. Nothing too bad at all, so I'm pleased. Let's hope it continues like that for the next injection!

 

Chris x