Headaches

New diagnosis and before diagnosis
1

Hi Guys,

Can anyone relate to having constant headaches as mine seem to be an almost permenant feature for me? Theres not a day that goes by that I dont have a headache of some severity, I would say its my most enduring symptom besides others of exhaustion, tiredness, pain in limbs and for some strange reason a couple of nights ago I had a terrible stabbing pain that was pulsating in my left side ribs? Thought i may have had a PE in the lungs but when i woke the next morning it was gone and hasnt come back since… strange these weird sensations at times and blooming painful too at times?

Anyone else think there going mad like me?

2

I can.I get such bad headaches I want to cry and nothing cures them,I have been known to have a headache for a month especialy in warm weather.

Charlie,x

3

Hi Charlie! Good to know Im not the only one suffering the terrible damn things!

4

Chelle I am sure there are others like us…Its horrid,and nothing eases them…

Charlie,x

5

Get your GP to do a blood test for APS Antibody’s; could be Hughes Syndrome that has identical symptoms as MS except for a bad constant headache. If so don’t worry HS is easilly treatable.

See http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/736

George

6

Hi Chelle I have had a headache since I left hospital on 18thMay after being diagnosed. It is not fun and I sympathise with you. It is just one other symptom. Is your pain in just 1 position? Mine is in the front of my head-normal headache and at the base of my skull, apparently where my lesions are- this does not subside with painkillers. In hospital I had steroid IV treatment for swelling in my brain, I wonder if this is re-occurring, perhaps a question for the neurologist on Fri. You are not going mad and your fears are normal. Mike

7

@goodtotalk.

What you are spreading is nonsense.

Misaligned Atlas does not list anything to do with MS.The headaches expierinced by MS suffers appear to have nothing to do MA.Plus usaly caused due to trauma.

Looking at the list of things that are possibly caused due to MA you could say Chronic fatigue,A balance problem,Migraines and headaches however what MSers suffer is nothing to do with MA…

You are clearly here to promote this twoddle and you do NOT have MS and therefore should NOT be posting such twoddle here.

“If you suffer from recurring back pain, migraines and headaches, a stiff neck, joint pain in the hips and or knees, rotation of the hips, repetitive strain injury, jammed spinal nerves, trapped nerves, a difference in leg length, there is now new hope”.

This again has nothing to do with MS.Our synptoms come from the brain and spinal column NOT MA…

MA is due to a missaligned bone in the kneck and again NOTHING to do with MS…

8

Hi JellyBean U are bang on right about trauma- nearly every time I fall over I bang my head, pity the bad head does not go away with the bruises on my back, arms and legs from falls ue to dizziness. This is a good at I have only fallen over twice, but it has took 35 min to write this. Daily I suffer falls and dizziness as well as weakness in my right side and slurred speech. When I go out there is a constant assumption that I am drunk, this builds my confidence no end. Mike

9

Mike goototalk is posting this spam on the forum.Its an expensive treatment that has nothing to do with MS.

However your falling is possibly due to weakness and or spasms in the lower part of your body and include dizzyness/vertigo and off balance.I often walk in a circle always to the right of me.

Mike it is possible you may of damaged something and should see your doctor,however what goodtotalk is on about is not for MS patients and therefor should be ignored.

The writting is the same as me,it takes forever to write my list of jumbled words then correct them or I miss words out.I can hardly write with a pen.Typing like I have dislexia…

I have deep gouges in my arms and back I am getting these during the sleep hours and I dont know how I am getting them.

Oh the drunk thing for me is terrible I also get accused of being a heroin addict,very horrid ignorant people out there isnt there?

Many of us relate to these headaches that seem to take weeks to leave us.

Charlie,x

10

Hi Charlie Good in it. I go for a VER test on tue then too see the specialist on fri. The MS nurse said she would be there on fri as she suspects something, dunno what yet. But this is my 2 nd relapse in 5 months, this one for the last 10 weeks so far and it ended up with a diagnosis. My writing is not good, and it wasn’t before so I found touchscreen better then a normal keypad, and Siri is quite good on a iPhone, but the predictive text can be random. It has been so swift that I struggle with my feelings and get very frustrated and angry, but my 6yr old find it harder to score past me when we play football, 4 legs now. The only problem with this is if he does score and I bend down too get the ball I fall over, so I have to take elbow crutches off first, so I can do a somersaults when I bend over for the ball. Good picture and I hope you will laugh as much as my son did, even thought I can walk properly and have balance and headache problems, my son laughing is worth it, as I am trying to make it as normal as possible. Take care Mike x

11

Having an illnes like MS drags us all down and the not knowing for sure.I have many bad days and have steadily got worse over the past three years or so.You are entitled to help with aides and meds while you wait for a DX.So do not sit and suffer or struggle in silence.

Many of us have shed many many tears and even got angry at ourselves and the world,belive me you are not alone and we all feel your pain and sadness.

I to have a child,I used to be so fit and run around with the children,play football,get all the children up and playing games.Now I struggle to even get to the local park and all I can do is watch.I wish I was ME again.

I laugh with my child over the silly things I cannot control.I laugh at myself and my child joins in.Inside we maybe feeling hurt and low but as long as we can smile for out children even when it hurts then they are happy.Children do not need expensive gifts but the love and attention from parents and family.Your child understands your not well and that you are trying he maybe 6 but these days children are knowledable.

I took walk with crutches,if I didnt have them I would be trapped at home going crazy.I to fall over and if I do I cannot get back up.I often imagine getting stuck on my back like a turtle unable to get back up with arms n legs flaying.

Do not worry about spelling or trying to write the jumbled letters,I do not.I am what I am.Only an ignorant person would make a verbal or written negative comment.I do not use spell check as I cannot reconise the word I am trying to type from the list.

Yes our lives have changed and yes each day we have to learn new ways of doing things and yes we do struggle with day to day tasks and many tears we cry.

But once you get a DX then its time for treatment that can realy help us,get the aides we need at home and outdoors,give us the right tools and we CAN have a good quality of life,I am afraid to say it all takes time,the waiting game is terrible.

Life can be a B**** but life is what you make it to.Keep fighting back,we have no choice of giving up we have to much to live for.

I have my down days and they are terrible.BUT then I get those days were I kick my self into touch.

Mike you are never alone when you have your extended family on this forum.

Charlie,x

12

Charlie It is a killer when you have kids and can only watch as you are too tired. The turtle vision bring back when I was in hospital and fell in the loo, I could not stop laughing afterwards and it was me again. I was DX 17/5/12 but have had no treatment yet. Will not forget that day it was when a chapter of my life slammed shut and a new one started. I know I can’t have back what I had, but I can “start again” and be better and stronger for it. From a family of 7 to a family of thousands-oh ye-but don’t all come for tea at once- I keep dropping cups. Mike x

13

Mike I was offered no help at all.You have to ask for the help,well I asked and made many phone calls etc.My doctor got me an OT.I got myself a support worker and a physio.

I had to ask for meds none were offered.My physio sugested Baclofen and my doctor made a prescription straight away.I visit my doctor regular she asks what can she help me with and hey presto she obliges.

Mike ask your GP to help,ring the neuro,s office,maybe social services adult services,however I had a bad attitude from the SS.Now I am getting a bath lift,bed riser a adjustable stool and even a second hand rail for my stairs BUT I had to ask and my doctor had to fight my corner.

Life will never be the same,however we can have some realy good days and we should make the most of them.Once we have got the help we needed to make our lives better then we feel we can then move on.Yes we get the darn fatigue badly afterwards and the pain and the spasms,but it was well worth it to see those around us smile.Seeing my friends and family happy sure make me happy.When you accoplish something be proud of yourself.

Oh gosh I forget how many times I have dropped a cup and spilt hot tea over myself.

I dont mind you dropping the cup BUT not over me hahahahaha.

I say turtle as my arms and legs will not do the dying fly…

We have many hurdles to cross,as we cannot jump them.If we try and fail many times but in the end we accomplish our goals then we again should be proud of ourselves.Our children will love us no matter what and always explain things simple to them.

My daughter watched Sam n Mark Sport Relife the other day.She was nearly crying as they showed a 10 yearold girl looking after her mum who has MS.My girl is 10 and could relate to this young girls story,plenty of praise and cuddles works wonders.

We still here we just lead our lives down a diffrent path.I even laugh when I slur my words and so does my child.Its good to laugh.

Charlie,x

14

Charlie As the advert says " it’s good too talk" it is. I appreciate the advice. Y GP is great, he referred me, rang me for a chat in hospital and whilst I was dodging OAPs armed with trollies and bad attitudes in tesco. The concil hav been out on filled in DLA forms for me and SS are going to do an assessment on me and my wife s a Carer. My wife n and 19 yr old are gym bunnies and are going to do a 10 k run for MS- wish I could run 100 m never mind 10 k. You are not the only one who slurs speech and some of the words are worth 150 points in scrabble, therefore we are innovators Mike

15

A good GP is worth there weight in gold.I know some have bad experiences with there GPS and Neuro etc.Im so glad I moved home and doctors as my last doctor was hopeless.At last I am getting the help I need.

You do know there is an extra carers allowance you can claim if you get middle to high carers/mobility DLA?

Its about £55 per week.for someone who cares for you more than 36 or 39 hours per week.But they must be 16 and above.

OMG the walkers with seats,these OAPs are faster than me walking with my crutches and I am sure one old lady was smiling at me and thinking hahahahaha I maybe old but I am miles ahead of you.

Now that scrabble quip made me giggle,I therfor am going to buy the game scrabble I will win hands down every time.

You are very welcome Mike,I may not be there in person but understand you completely.It is hard when we have children but when they have a school concert we are the parent who claps the loudest and longest,we are the parent on sports day who cheer the loudest.We also laugh the loudest and it comes from within.

We appreciate the smaller things in life and take nothing for granted,we are worthy of a good life,we are worthy of good things,we look for the silver lining in everything.It is there you only have to look and belive.

And when someone helps in the smallest of ways we are thankfull and greatfull.

I know I am.

Esssh I wish I would stop adding the letter P into words when they clearly do NOT have a P in them…

Charlie,x

16

Hi Charlie It was nice to speak to you and your advice has been great. No doubt we will ’ bump ’ into ech other, but not literally as we will nd up on our ar*** in a tangle of crutches. Mike x

17

I get headaches mainly just on my right side when I have trouble eating, the harder i try to eat stuff the worse they get… doc. was really baffled by that one! sometimes i get random tight pain any side of my head.

xx

18

Yes it was Mike,if you ever need a chat just shout and I will be here.

Jules I get headaches behind my left eye and from the back of my head all over the left side of my face.I often feel if I pulled my eye out the pain would stop.These headaches can vairy.Sometimes my whole head along with my kneck.They are vairied.

Also like tightness and if my skull is to small for my brain.

Jules ring your neuro and see if he can recommend something,my doctor is not sure of meds I can take but she knows how MS and headaches can effect us.

Charlie,x

19

Sorry chelle for hijacking your thread.x

20

your not alone, i have awful headaches almost every day and nothing relieves them at all, i cry from the pain!!

Poppy xx