24/7 Headache all day, everyday for 18 months

Brain and nerves
1

Hi All

I wanted to write my own story on here in hope that I can communicate with people that are going through the same thing, or have been through the same thing, and would take the time on reassuring the ones who are still on this nightmare of a journey that things can get better.

I am a 23yr old Female, my headache started March 2015, and ever since I havent had a moment without it.

My headache feels like a very tight pressure all around my head - like my head is being squeezed hard. I have sore areas on my scalp. My face is numb + tingley(feels like little bugs are running across my face) and also my face can feel like its drooping when its physically not. I have all the symptoms of migraine - light/sound sensitivity, and also smells make me feel sick. My eyes constantly ache. I get a throbbing pressure in my gums and behind my nose and also feel pressure in my ears (like when you are on plane). I developed tinnitus a month after my headache and it hasnt stopped ever since. My neck, shoulders and top of my back constanly ache like hell to - which doesnt help when my job consists of sitting at a computer 8 hours a day!

I have seen 3 neurologists - one diagnosing me with chronic tension headache, the most recent 2 I have seen have told me chronic daily Migraine.

I have tried Amytriptaline,Nortriptyline,Propranalol, and Candersartan (Apologies for the spellings)- these have had no effect at all. I have had the steroid injections in my head which gave me no relief. I have bought a mouth guard from the dentist as she said it sounds like I am grinding my teeth at night- after a few months of wearing this I didnt notice any difference.

I saw a Chiropractor who told me my neck is pushing forwards and blamed my headache on this, but after 4 months of attending 3 times a week I felt no different. I have recently payed to find out if i have any food intolerences - which came back that I had, but after cutting out the foods I felt no different. I really am sick of false hope and really am at my witts end.

I am waiting on an appointment for my first botox injections.

Im finding it so hard to lead a normal life with this and often have suicidal thoughts. The only thing that stops me if the thought of leaving my loved ones behind.

Its a nightmare trying to work full time with this, but also know if I claimed any disability allowences it would certainly make things easier by not having to be stressed at work, but would mean no money to pay bills - this would lead to more stress.

I feel so trapped and feel like im never going to feel ok again. I now suffer from anxiety + depression. It really effects my relationship with my boyfriend as I am always down and miserable, and we can never do things togther because of my head. I met him 10 months ago when I had the headache, so he has never really met the real me!

I feel no one understands apart from the people I have been speaking to on this site, but everyones story is different.

I really need some words of wisdom, and to know even though I feel so lonely, I am not alone.

Can anyone out there please offer any advise or share anything that has helped you? I cannot bear the thought of living like this for the rest of my life, and refuse to!

Thanks for taking the time to read my post

I look forward to hearing from other people that are also suffering from this awful disease!

Amber x

2

I have a constant 24/7 migraine. Anyone got any ideas for relief?

Posted 4 days ago

I am a 57 year old woman (through menopause - last period 7/2014). On 4/5/2010 I woke up with a migraine. I'd had them on and off for about 25 years but they never lasted more than 3 days or so. Unfortunately, I've still got that 4/5/2010 headache. It changes location and early on the severity ranged from a 6 to a 10. They are now only a 9 or 10 on the pain scale. I have had every test run and tried every medication. I have been to UCLA Medical Center and the Diamond Headache Clinic in Chicago (for a week). I've had pain blocks, epidurals, tens units etc. I live on Dilaudid (56mg a day). We are currently testing for the right pain med to use in an implanted pain pump. I had to quit work 5 years before my retirement date. I would have had 30 years in working for the state of Calif. I had a problem after I had a spinal tap because apparently I was supposed to be told to go home and lay flat (not even a pillow) for days. Because I didn't, the puncture didn't heal and I leaked spinal fluid. That was not the cause of the migraines, the tap was done during the diagnosis process for the migraines. The only thing that helps a tiny bit is botox from my headache specialist. All it does is make the pain meds work a little bit better. Please if you know of anything that might help. The nights that I do sleep, maybe 3 nights a week I am honestly sad to awaken the next day. My life is nothing but sadness and Dr appts. The only thing that keeps me alive is knowing it would destroy those I'd leave behind. Take care and God bless.sorry for errors but my head is killing me. 😢

3

Good morning Amber99286.

OMG! I haven't suffered what you've gone thru but what does your MRI show? Any lesions on the brain?  At first I of course thought MIA's, then I thought MS. Do you wear glasses?

I immediatley prayed for you after reading your story. Please don't give up, help is on the way!  

Iodine salt, sudden bright lights and chocolates are my migraine triggers. I make sure I have my sunglasses with me at all times! I one pair in the car and one pair in my purse and one pair in my desk at work! Lights are a killer!

So sorry you're going thru this and I pray that relief comes very soon for you so that you can enjoy life and your wonderful boyfriend!

4

Hi Amber

I suffer with migraines and I suffer with my neck because I have a bulging disk in my lower back and scoliosis and now athritis!!

I was doing a media course last year and finished this June..

I can tell you being in front of a computer

DID NOT HELP ME Attall. I feel it's drastic to have to say this but computers do not help your eye sight or your head or your neck or back..

Since I have stopped glaring at a computer doing my course I have had great relief..

But sometimes we have to do something drastic to get a better result..sorry🙁

5

No Amber, you are not alone. This forum has helped me realize that. So many suggestions and still no answers seems to be common, but at least it's reassuring to know their are others. I'd give you my history, but it would sound like many others. I now feel I'm just getting worse not better. So I too am still searching, hoping something will change. I have tried Botox, 3 times, no help. I hope maybe for you it will help. Maybe try a good pain management clinic. I have found a system that makes it bearable, but I'm afraid I'm just having rebound headaches, so by helping, I've just made it worse. So hang in there, you always have this forum to come to. And just like you said, if people only knew us when ....

6

Hello CT

Thank you for getting back to me

I have had an MRI+CT scan and they were both normal sad

I have had 2 eyes tests in the past 12 months, both times they have said my eyes are absolutley fine!

Thank you for your kind words and wishes!

Do you have constant headache or are yours triggered?

What do you take for relief?

Amber

7

Hi Elizabeth

Thanks for getting back to me

I totally agree that being in front of the computer is one of the worse things for all of my symptoms - The thing is the job I have now is a good job, I could leave to do another non-computer job and feel just the same, but then again I could leave and it could make it easier for me. I get anxious that my family and friends will judge me and call me silly for leaving a good job as I have had a few jobs in the past and they have all been rubbish, but I guess I need to do whats best for me. Im scared of leaving the job and then regretting it. I just dont want to make any wrong decisions, but as you say sometimes we have to do something drastic to get a better result.

Amber x

8

Hi Hamneggy

Have you tried cutting out specific foods to see if they are giving you your headache?

I expect you have probably tried everything in the past 6 years!

Maybe one day it will just be gone, and we will live a life like we had before the pain - something that I feel was taken for granted!

Amber

9

hi Amber. I too suffered similar migraine but with other ill health symptoms. It was so awful and painful and no one seemed to understand it. Neurologists were no use to me. 

12 years ago I was diagnosed with an auto immune disorder. This was the cause of my continual migraine. I am now disease free (not 'cured' as there is no cure for what I have) but symptom free due to medication. 

If you have other symptoms going on which you may or may not relate to the migraine please consider exploring this avenue. This area is so poorly understood. 

I have a form of vasculitis (I have Behcet's but there are other forms of vasculitis). A lot of people with vasculitis have this migraine syndrome. It is caused by inflammation which is why it doesn't respond to conventional treatments. 

I think you should have this ruled out. Ask for your inflammatory markers and ANA to be checked. If there is anything in there then ask for a referral to an appropriate consultant and not a neurologist. Speak with vasculitis UK about your symptoms. Free helpline. 0300 365 0075. They will speak to you and offer support and advice. 

I have no idea if this could be what you have going on but I would want to have it ruled out. It often developsin early 20's and has a wide variety of possible symptoms. 

10

oh and by the way Amber, my mri's etc are always perfect and very little in my blood profile. I have slightly raised inflammatory markers and can be in totally excruciating pain! 

11

oh and by the way Amber, my mri's etc are always perfect and very little in my blood profile. I have slightly raised inflammatory markers and can be in totally excruciating pain! 

12

Hi Amber. Have you got a screen protector on your computer screen? That might help you a bit.

And make sure you are sitting in a decent comfortable chair for your back and neck..

See if you can get a special adapted chair for your neck and back.

I'm in the process of looking into it myself.

Because I need a lot of support in my profession myself being a designer.

Liz😀

13

Amber, most times my migraines are triggers and no light with 600 Ibuprhofen eases the pain so that I can function without nausea or lightheadedness...

My Dr told me that my MRI showed lesions from all of my Migraines. However, we haven't rule out MS.

Take care sweetie!

14

Hi Margaret

Thanks so much for shedding some light on this, i will definatly ask me doctor about this. How are you diagnosed vasculitis, is it a blood test?

15

Hi Betsy

Thanks for your reply

Can I ask how long you have been suffering with this, and is yours daily also?

16

hi Amber, no the tricky thing with this is that there is no specific blood test. When I read some stories on here it makes me think that there are a lot of people out there going undiagnosed. It took me years to get a proper diagnosis. 

You would need to get a referral to someone who understands the condition. In my experience a neurologist wasn't able to diagnose me. It is not a neurological condition (it can be but actual neuro vasculitis is rare). 

You would be best placed to ask for advice from someone like Vasculitis UK and see a specialist who understands that particular illness. There are good doctors around the country ...it depends where you are. I added their contact number. I highly recommend a conversation with them. I am assuming you are in the uk. If not let me know. 

My blood tests only ever show raised ESR and CRP. I am ANA negative. Blood tests are not a way alone of diagnosing this sort of disorder. It is often diagnosed on history. x

17

Hi Margaret

Ok Thanks. I shall call them, I am from London - Surrey so will be fine to call the number.

So you had migraine symptoms and no meds worked, until you were diagnosed with Vasculitis, and now you have meds that let you live a pain free life? Thats amazing, and so scary to know that there are so many disorders out there and so many people are mis-diagnosed!

Your would think how far humans have come, we would know everything by now!

Amber x

18

They have become daily in the past few years, but I have had some sort of headache for 30 years. 😞

19

Great you are in London. My top recommendation is a Dr at The Royal Free in Hampstead. He sees NHS patients. Dr Desmond Kidd. He is a neurologist but with a special knowledge of vasculitis and knows all about that area. I would ask for a referral to him. He is totally brilliant. 

One of my GP's didn't know what I had and I had to explain it to him. You think doctors know everything but sadly they don't. x

20

and just to confirm....nothing but nothing worked for me!! It was hell on earth. Thought I was having a stroke so many times. Especially when I woke up with most of my peripheral vision gone. 

Eventually I started to have a sort of seizure with it it was so bad. The only thing that worked for me was controlling inflammation. Vasculitis caused inflammation and that was the cause of the migraine. Once that was controlled....symptom free now for 3 years. x