24/7 Headache all day, everyday for 18 months
Posted , 18 users are following.
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
3 likes, 48 replies
margaret22116 amber99286
Posted
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!
margaret22116 amber99286
Posted
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!
elizabeth142 amber99286
Posted
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😀
sianemily amber99286
Posted
Amber- in your original post you don't mention triptans...have you tried them?? They have totally saved my life. Without them I would have been that mother in the Enid Blyton books who 'took to her bed' all summer....
amber99286 sianemily
Posted
I havent tried, I may be wrong but i did speak about this with my neurologist, and she said that I would need to come off my contraceptive pill and have a coil inserted - which I wasnt keen on at all as I havent heard many good stories about the coil, so thought Id try the botox first.
I have heard Sumatriptan are very good, is this the epileptic drug, or am I getting confused with something else?
Amber x
betsy70690 amber99286
Posted
One that is used most frequently is imitrex or its generic. It comes 9 tablets in a prescription of 100mg each, but u can break them in half to help the script last longer. Also if it's too expens on your ins plan try using GOOD Rx. That's a website that quotes prices, usually less than what ins covers. I refer to this Good Rx for all my scripts to compare prices. It is not ins, and doesn't use ins, but prices are usually much more affordable.
tina2311 amber99286
Posted
Hi Amber,
I have just read your story and can sympathise with you completely. I have had headaches for two years now every day and have struggled to cope and work full time. I have woken up crying in the middle of the night and been so upset with this. I tried many medications, amitriptaline, nortriptaline, naproxen and many more. I have had injections into my nerves in the back of my head but never tried the botox and struggled to find anything that would make an impact. Last year I had loads of time off work due to the pain but since January I have found something that helped. The neurologists discovered that I had a pituitary adenoma but they said that this would not be causing the headaches.
In January of this year I went, very sceptically, to an acupuncturist. Someone had said give it a go as it can really help with migraine. So I went for my first session. I am now able to cope with the pain on a daily basis. I still feel a little nausea sometimes and occasionally I take paracetamol or if the head is really bad I take co codamol but I have not had any time off work since. It has allowed me to cope with the pain and helped me to live a more normal life. I stopped going recently, as I have been going every two weeks since January, but the symptoms came back. I have restarted and the pain has lessened once again.
I was extremely dubious about acupuncture working but it did. I don't know how it works and I don't know if it will work for everyone but it is worth it if it works for you.
I hope you find some relief soon.
Kind regards
Christine x
amber99286 tina2311
Posted
Hi Tina
Thank you for your reply, seems your story is very similar to mine.
Acupuncture will definatley be my next try for pain relief, I have heard good and bad stories about it, but as you say it doesnt work for everyone but its worth a try.
Its annoying that you cannot get this on the NHS, so sick of spening all my money on stuff that doesnt work
I shall definatly book some sessions in and get back to you with my results.
When you take painkillers do you get some relief for a while? I have found literally no pain killers touch my head. The only thing that seems to make any type of difference is laying in a boiling hot bath with my head under water. It eases for a few minutes.
Wish I could have a good drink, and get so drunk that I could just forget about it for a few hours, but if I drink alcohol within 10-20 minutes it make the pain 5 times worse
How does your headache react if/when you drink alcohol? (this is if you do drink)
Amber x
betsy70690 tina2311
Posted
Hamneggy betsy70690
Posted
Hi Betsy, I tried Fioricet but of all the crazy things it made the headache even worse. Put up with it for 2 weeks to see if it would stop but it didn't. It seemed with all the medications I've tried (more than I can remember), if any of them did help it only lasted 3 months or so and then they didn't help anymore. Have you or anyone else had this problem? Thanks for your time and God bless.
tina2311 amber99286
Posted
Hi Amber
I know it is hard spending all your money on prescriptions and things but I am happy to pay for the acupuncture for some relief. It costs me £35 every fortnight and there was initial consultation fee of £70 but it has allowed me to keeep on working and cope with the pain.
The only type of painkillers that worked for me were the ibuprofen type medicine which are anti inflamatory but they cause massive stomach problems and I had to stop. These included Indomethacin, Naproxen, or anything like Nurofen. They also gave me Lansoprazole and Omeprazole to try and control the stomach's reaction but they still didn't agree with me. They gave me chest and stomach pains that were really severe.
I have had Tramadol which just makes me feel like I am on a different planet but the pain was still there.
I must admit that I have never tried lying in a bath of water and putting my head under but worth a shot if it gets bad again.
I find that co-codamol do work for a short period of time but they have other issues and bung you up if you take them long term. I was on 8 a day before I discovered the acupuncture. They are also supposed to cause headaches so not the best painkiller for headaches.
I do occasionally drink and stopped drinking for ages to see if it had any effect on the headaches. I found that it didn't really have any impact but I do not drink too much now as I find my head is definitely strange if I have too much.
I hope this helps and I hope you find some relief soon.
Tina xx
sianemily amber99286
Posted
Te: triptans- I think the other person answering is from the US & so mentioning price of drugs which we don't need to worry about!
You absolutely must get triptans prescribed. I have never heard anything about them making the pill ineffective?!! (But also, with migranes you should only be on the mini pill...). They are not the epilepsy ones ( those are the ones you take every day, as a preventative ) you take these at onset of an 'attack' & they are brilliant. Unlike codeine or strong painkillers, they don't make you feel weird.
Brands/types are sumatriptan, imigran, zomoltriptan. Any work for me (phew), but not for my daughter :-(
betsy70690 sianemily
Posted
That is correct, my reference to Good Rx is in the in the US. You are fortunate that you can go through these trial and error of finding something without the expensive cost. I've thrown away many that had no effect and worse side effects.
betsy70690 sianemily
Posted
And finally, although I haven't heard of the others, sumatriptan is the generic for imitrex which was originally given as an injection, no available in pill form.
Ginny_Weasley amber99286
Posted
Your symptoms sound a lot like idiopathic intracranial hypertension. You may not show swelling on your eye exams, it took 5 years of the same headache before I showed optical nerve swelling. After a lumbar puncture I went on 1000 mg of Diamox. It helps but I still have pain, and it seems to exasterbate my migraines. I take also Lamotrigine for preventative, and fiorcet and migrnal as needed. The as needed meds help to at least break the pain cycle.
Jenn
amber99286 Ginny_Weasley
Posted
Hi Jenn
After googling my symptoms everyday in every way you can imagine, I have never come across this! It would make sense I have the ringing in my ears and the swooshy sounds too. Would my mri show if I have this ? I have suggested different headaches to my neurologist but she's adamant that is daily migraine, even though mines more or a pressure all over my head than a throbbing. Was you told the same thing ? I bet you was so pleased when you got the right diagnosis. Does it effect your daily life or do the meds make life a lot easier?
Amber x
margaret22116 amber99286
Posted
Hi Amber raised intercranial hypertension is a possible part of the type of headache I was talking to you about. It will not show on an mri necessarilly but may show in a lumbar puncture.
Of you google an article by Dr Desmond Kidd on neuroligical complications of Behcet's it explains it very well there. I will try to send it.
Despite having these symptoms my intercranial pressure was not raised. Some other sufferers were. X
margaret22116 Ginny_Weasley
Posted
Ginny_Weasley margaret22116
Posted
Margaret,
I've never been evaluated for any auto immune diseases. What type of doctor diagnosed you? My primary neurologist seems to think since I no longer have optic nerve damage it is migraine. My headache specialist believes the IIH is a major part of my pain. I am in the US, how should I start this conversation?
margaret22116 Ginny_Weasley
Posted
I will send you something to read by pm as it is a bit long for posting on here and if you think it may fit your profile please speak to someone from the Vasculitis Foundation in the US. If they are like vasculitis uk they are so good and will have information on docs near you. The key to this is that a neurologist could not diagnose me. It is not a neurological disorder which causes my very similar symptoms but a form of vasculitis which causes inflammation of the brain stem. I send you something by private message to read. Also have a look at my profile as I have put my symptoms on there. Vasculitis is a wide ranging illness and causes a lot of symptoms for some while others may just have one or two problems.
Best type of doctor here anyway is an immunologist or a specialist in vascultis.
Ginny_Weasley amber99286
Posted
Amber,
The only finding on an MRI could be empty sella, though my MRI's are perfectly normal aside from some lesions my neuro believes are from the migraine. A lumbar puncture is used to diagnose, but CSF pressure fluxuates similarmto blood pressure. My most prominent symptom other than headache was I began seeing stars/floaters constantly, which prompted the visit to my eye doctor. At that point was when the optic nerve swelling was found. Not everyone has optic nerve swelling, the diagnosis is made by measuring the opening pressure during a lumbar puncture.
The diamox helped me at first, but it seems like I become resistant to it evemtually and need to go up in dose. Though I have developed migraine that has not stopped over the past year and a half. I've been out of work for it several times in attempt to get it under control with ER visits for DHE and magnesium infusion and so many toradol injections it developed a GI bleed. Toradol helped some, possibly due to lowering inflamation and making more room for CSF in my head and spine. There isn't much they know to do about it, they don't really know the cause. Diamox, serial lumbar punctures, or shunting are the options currently.
Jenn
margaret22116 Ginny_Weasley
Posted