Hi! I am an 18 year old boy form the UK, and 4 years ago i developed a condition called New daily persistent headache. It is a very rare condition - estimated to be around 0.03 of the population.

I have been told that the symptoms of the condition vary for different people, which lead to allot of confusion in the early stages - we spent about a year trying to figure out what it was. I had more blood tests than i can count, an endoscopy, a CT scan and a bunch of other tests. Here and here are some links to research if you so please.

My condition means i constantly have what doctors call a background headache - a non stop headache. This background headache varies in severity, and when it gets bad or i am exposed to a trigger then i develop a migraine. I used to get migraines once a day but in the recent months they have been reduced to 2-3times a week. Unfortunately my condition is untreatable, but there are things which help - i take medicine to help me sleep and i have medicine i take when it gets really bad.

I have been a bit better over the past few months and people usually dont really ask in depth about my condition because they are uncomfortable - so i thought doing an AMA would be good for me as well as helping people understand these types of condition a bit better.

Thanks

Here is my proof

Comments: 201 • Responses: 70  • Date: 

DaveB4214 karma

I read that cannabis can be used to treat migraines. Not necessarily smoking it, but perhaps ingesting it... have you tried this treatment and have you had any luck with it?

zedos12 karma

i have hard that too. not sure about its legality in medicine here in the UK though. i might have another look into it. havent tried it yet though

Alv2Rde3 karma

Look at sativa strains. They're less 'heady' and have been known to relieve headaches as opposed to indica which can often have the opposite effect.

I watched a online clip with Doug Benson in it and they all smoke up - the girl in the group has massive headaches / migraines and uses sativas to help. She mentioned that if the strain is a hybrid (mix of the two) then she can tell - it has to be a clean sativa strain.

Good luck my friend. Headaches are no joke.

zedos3 karma

Thank you. I am going to have a look into this stuff and discuss it with parents/doctors. I am willing to try anything if it might help. Thanks for the advice!

Chompchompers-12 karma

Have you tried some simple Ibuprofen? I take Ibuprofen for my headaches and migraines. Typically what I do is when they come on I take 3, if they get really bad I keep taking more. Up to 10 if it's one of the ones that make me wish for death. Ibuprofen really, really helps curb the pain for me.

Edit: Some drug expert came to my high school once and did a speech about marijuana and stuff, I asked her about vicodin and how much ibuprofen to take and she told me vicodin doesn't work on headaches, but with me weighing 180 pounds I could take around 2500mg of ibuprofen at once with food and it'd knock out the migraine, but not to take any more than that. So I take 2000mg on the REALLY bad ones, 1200 on the normal migraines, and 600 on headaches. Quite frankly I don't care if I overdose on it as long as it can get rid of the pain, hasn't happened yet though, highest I've taken at once was 2400 (12 pills) I believe.

Edit2: If you're going to take large doses don't take them all at once, at least wait a couple hours in-between with meals. Sorry for not clarifying what I meant.

zedos2 karma

yes i have, but it doesnt work for my type of condition, even in large doses.

oliversjgilmour4 karma

How has it effected your social life?

zedos16 karma

pretty drastically to be honest. I used to be a very extroverted very energetic person but over the past 4 years i have become quite introverted - partly due to the fact that hanging out in big groups is very noisy and hectic (can lead to worse headaches) but also because i am exhausted allot of the time. so that means i go out allot less both because im not well enough but also because i dont feel like hanging out with people.

oliversjgilmour6 karma

Feel for ya, man.

zedos5 karma

thank you :)

R_Cunningham3 karma

Do they occur on a specific part of your head?

How severe are they?

Do you get any signs or symptoms before a headache occurs?

zedos1 karma

they are usually just all over - no specific location.

The most sever migraines are the worst pain i have ever felt. in the leaflet they give you about migraines it says that its worth than childbirth, but i cant compare :P Its really intense though, likesomeone has their hands gripped on your brain and they are trying to rip it in half.

i can usually tell before i am about to get a migraine, normally a few hours before - i start to be very forgetful and i feel kinda drowsy, i get a throbbing sensation in my head, my eyes become very sensitive to light and i get very sensitive to noise.

waterboysh1 karma

My migraines almost always cause jaw, neck, and shoulder pain. Do you ever get that? Just curious because that has my doctor fairly perplexed.

zedos1 karma

I dont personally get it, but i have heard of cases where people with jaw injuries get bad migraines. I dont know what causes it though. Hope you get better!

L_Cranston_Shadow3 karma

Out of curiosity, since I know absolutely nothing about this condition, has this sparked an interest in you in researching other cases and ongoing research into it?

zedos5 karma

yeah a bit - i have always been interested in science and biology (i come from a long line of doctors) I have done allot of research into the experimental or newer stuff - one of which is a vagal nerve stimulator. i used to go to a group which had other people with similar conditions which was quite good.

mahabibi3 karma

Medical device engineer here. Any luck with the electrical simulation therapies? There are quite a few out there for various conditions and parts of the body. Nevro, Axonics Neuromodulation, Neuropace, and the bigger companies are all looking at this space

zedos2 karma

I have used one which i believe stimulates the vagal nerve, but it didnt really help. i think it probably made a bit of a difference in the first few weeks of using it but after that i dont think it helped

Ladieslovetheighties3 karma

I definitely have this. My migraines have become a daily occurrence and I had to drop out of school due to my inability to participate at all. I have to shoot around in bed all day and as a very tall person I've lost thirty pounds since they started. What should I do? How do you deal with your headaches?

zedos5 karma

I cant give you medical advice but i think its good to try and find a hobby that you can do while lying down or sitting. Something like guitar or coding or origami - there are plenty of choices. I just try and keep my mind off it. But if you havent yet, see a doctor because there is lots of great medicine and procedures to help with this stuff.

ieatcorndogs1 karma

I used to have what you're describing. I tried everything. For 2 years. Started smoking weed and drinking massive amounts of water. I rarely get them anymore. Might not work for you, but couldn't hurt!

zedos1 karma

weed isnt legal here but it might be for medical purposes. thanks!

RealMyBliss2 karma

Do you get used to having a headache? Can you mostly ignore it, when it isn't too strong?

Dude, i also wanted to tell you that i hope you will find a better medicine to get rid off the headaches. I once broke my arm and after having that experience, i can say i prefer a broken arm anytime, than having a headache. Headaches are horrible. They keep you from thinking straight and doing what you love or like. So i really hope you manage well with this condition. It was the first time i read about it and i am really glad i don't need to deal with that.

zedos4 karma

I have gotten uused to the background headache - i find it is managable most of the time. mostly i try to ignore it and push it to one side, focus on something else. But i will never get used to the migraines. they are just something you have to deal with as they come. Thank you so much for your kind words.

-KhmerBear-1 karma

Hey, I just wanted to chime in and say I went through a similar experience. I had a shitty but not excruciating headache for 8 years. Lots of tests, etc., but all my doctors gave up eventually. Then over the course of a few months it went away. I have no idea what it was.

1998->2006 was a bit of a downer, but now everything's good. Hopefully yours will go away as well.

zedos2 karma

That is really encouraging to hear. thank you.

-KhmerBear-1 karma

You bet. Don't give up hope. Life is long and unpredictable!

zedos2 karma

Thanks!

commentssortedbynew2 karma

Is this like a Custer Headache? I had that once for three weeks a few years ago, came from nowhere and haven't had it since.

Do you find it hard to convey just how bad the pain is?

What medication do you find works? If mine ever comes back I want to get whatever works as fast as possible, doc suggested Lithium at one point but my condition disappeared before I needed it.

zedos1 karma

It is similar to a cluster headache - but usually a cluster headache i really bad for anywhere from a day to a few weeks, and then goes, whereas i have a constant headache and migraines regularly, but not for as long. My sister has cluster headaches an they suck. I hope you dont get another.

I do find it hard - its not something i can adequately describe with words. A migraine is the worst pain ive ever felt.

In terms of medication when i feel a migraine coming on i take naproxen (a stronger version of paracetamol i believe) as well as sumatriptan. These tend to help with the bad ones.

Good luck!

commentssortedbynew2 karma

Thanks for the insight, take it easy and I hope it's just something that fades away.

zedos2 karma

Thank you :)

berryperson2 karma

Hey! My brother has something similar, but the headaches never go away. They vary in intensity but have generally been upwards of an 8+ on the pain scale. He'll never admit when it's a 10. Just wondering if there is any significant thing that you think has caused it? My brother had his start 2.5 years ago, a few months after he got a second concussion, but the doctors haven't been able to link them together. So we aren't sure what exactly started his.

zedos1 karma

Depending on the type of condition, they can be triggered by different things. For me they developed after i got a nasty virus. Head injury is another known cause

A_Cheeky_Fuck1 karma

What was the virus?

zedos1 karma

cant remember, it wasnt anything unusual it just hit me pretty hard

AngrieUnicorn1 karma

I also have chronic migraine! I'm currently taking a very low dose of Topiramate (an anticonvulsive used for people with epilepsy) and it seems to be working. What do you use typically to treat it?

zedos2 karma

i normally use sumatriptan and naproxen when i feel a bad one coming on. hope you get better!

Prunestand1 karma

How is your everyday life affected, more than being on medicines 24/7? Can you manage your studies?

zedos2 karma

i havent been at school for about 3 years, i mentioned elswhere in the thread that i ended up with very few qualifications so it is pretty muich impossible for me to go to university. i am still hopeful i will find a job which i can manage and weorks with my condition.

Prunestand1 karma

Let's hope so. I hope the best for you, being 18 myself.

zedos2 karma

Thank you so much :)

moncaz1 karma

What triggers a migraine for you? For me cigarette smoke or other really strong smells will trigger them for me.

zedos1 karma

cigarette smoke does it for me too, aswell as bright lights, loud noises, certain smells, spices, lack of sleep, dehydration and tiredness

tommyl19981 karma

I had no clue this was a thing. I get migraines a lot and also constantly have a headache. As a kid they were the worst I'm 17 almost and they are showing no sign of going away. Should I go see a doctor? And how painful are the background headaches?

zedos1 karma

Yes! go see a doctor. There is really great medicine available. the background headaches usually vary between 3-6/10. Hope you get better :)

Lion101 karma

I suffer from a very similar "disease", but instead of headaches I suffer from immense stomach-pain. My question is: how did you go about to find the specific condition? I think that actually having a diagnose would greatly help me since it would make it easier for people to understand my problem.

zedos2 karma

finding the specific condition was a pain in the (head) but over time i saw enough doctors and neurologists eventually one figured out what was happening. at first they thought it was a stomach problem for me because i get abdominal migraines too. i agree - just having a name or something to call it helps allot.

Azelais1 karma

I'd just like to say hey. I have the same condition. Same story, too, except started when I was 13. I understand your pain, literally.

Would you be okay with me asking what kinds of medicines work for you? My doctors still haven't gotten mine under much control.

zedos1 karma

Hi! sorry to hear about that. I havent found any medicine which worked for the background headache, but when i feel a bad one coming on, i take naproxen, and a triptan medicine (elitriptan, sumatriptan etc) which usually works to stop it getting bad. i also take ondansatron to help with the nausea. Hope you find something that works.

GISP1 karma

How long does it usualy last?

zedos2 karma

the migraines? usually a few hours or until i fall asleep. most of the time i just try and sleep but its pretty difficult :P

darkeyedone1 karma

I get migraines that literally last for days. On average, three days. I see a neurologist about every three months. It screws with every aspect of my life.

zedos1 karma

it sucks doesnt it. good luck with them- i hope you get better <3

darkeyedone1 karma

It does. And no one really gets it unless they have the problem. I hope the meds work for you. They only work 25% of the time for me. Been through all the triptans and have done botox. Nothing really helps.

zedos1 karma

Thank you :)

naseusDNA1 karma

I imagine exercising must be pretty rough. But have you tried cardiovascular exercise at times when the headache is less?

zedos1 karma

I have, yes and i found it qiute helpful. I am currently trying to get in a bit better shape for the summer (i find the heat and light exhausting so its hard for me to be on my feet allot) so i am doing some routines of cardiovascular type exercises, and i occasionally ise my siblings wii fit when i feel like it. :D

Milk_cockies1 karma

Do you get hear any noise in the head?

zedos1 karma

i have at some points, but rarely

PolyAmethyst1 karma

Hi there! My SIL(just turned 16) seems to be suffering something very similar to this. It seems to be a near constant headache that is really preventing her from having a normal life. Is there any coping mechanism that has helped you get your life back to normal or do you not feel it is possible to go to school and have a normal job?

zedos1 karma

Im sorry to hear that. To be really honest, my life is far from normal, but i cope ok. mostly i find it helps to distract myself allot, wether its with reading or playing games or watching tv. A big part of my condition is when i have a good day not just going all out but conserving energy, and pacing myself, because i know if i go all out i will fall back harder and be worse for a while. I havent been to school for a long time but there are really good ways of keeping my work going and studying when i can (khan academy is one of them - its very good) Cognitive behavioural therapy is another thing - i am about to start a course of it, so i dont know if it helps or not, but i have heard good things about it. Make sure she has someone to talk to about it - it can be a very lonely condition - its very rare and not many people know about it, although i find that allot of people say things like 'yeh i had migraines when i was a kid', or 'i think i had a migraine once' i feel like saying 'if you had one, you would know about it!' having someone to talk to about how you feel is really helpful. I wish her the best of luck. It sucks.

astifoman111 karma

Wow. I can relate but I'm not sure if I have the same thing as you or I just have constant headaches due to getting a lack of sleep and a lot of exposure to devices being a nerd XD. But anyways all this started last year when I had a headache that lasted two months I usually wake up with the headache being pretty bad then easing off as I progress into the day. I did a scan for my head and nothing was found at all. I drink a lot of water, sometimes the headaches ease off when I get fresh air, focus on other things or even when I have a meal but I've had this sorta background headache since 2014 November and I just have no idea what it is. Is your experience the same in any way? Everyday I wake up, I can feel a headache at nearly all times again usually more tense as soon as I wake up.

zedos1 karma

Sounds similar to me. Apparently these conditions can vary quite drastically though. Normal painkillers dont usually work with these background type headaches so see a doctor for special meds if you havent. Otherwise, i wish you the best of luck. Thank you!

astifoman111 karma

Thank you very much, this has opened my eyes and I'm probably going to make a trip to the doctors ASAP.

zedos1 karma

Great! i wish you the best of luck. hopefully you sort out whatever is going on.

NotJustOuch1 karma

Hi there. 26F with a similar condition. Did your headaches slowly become more frequent or did something trigger them? Other than medicine, what else do you do for treatment? Do you have any comorbid pain issues?

zedos1 karma

Hi! I didnt have headaches up until i got a really bad virus about 4 years ago - which triggered them and ive had them ever since. I have tried accupuncture, vagal nerve stimulator, injections into the trigeminl nerve and a few more things like some lesser known herbs and stuff which the doctors just tried to see if they would work. What do you mean by comorbid?

NotJustOuch1 karma

By comorbid, I mean conditions that have occurred alongside your headaches. For example, along with my daily headaches, I have developed insomnia and chronic nausea.

zedos1 karma

Oh. Yeh i get both. very difficult to sleep and constantly nauseous.

mattwb721 karma

How well can you even function in a daily routine? I've only had a migraine a couple of times and I was a worthless whiny bitch.

zedos1 karma

:P i have ways of coping now, but the bad migraines i still cant do anything. its just too bad. in terms of a daily routine i function ok, as long as it is in and around the house with minimal excercise. but when a bad one comes along i dont function at all.

Anon-anon1 karma

Is there a way too permanently disable the brains ability to register pain in regards to these migraines? Do you think it would be worth it?

zedos1 karma

There are ways to do something similar to what you are descirbing - injections to certain nerves in the skull and neck and other similar procedures. i have had them but found they only helped for a small time.

leggy551 karma

What were you doing at the time when it first started?

zedos1 karma

i got really sick with a virus which triggered the onset of the condition.

Skidamarinky1 karma

Do you get Aura with your migraines?

I certainly feel your pain. I get debilitating migraines on almost a daily basis. I wake up with a sligjt headache daily and most days it is tolerable with an off brand migraine medication. I start with an aura, sometimes not depending on what my trigger is. If I get to hot, there is a consistent loud noise, strobe light, and certain smells (I find plastic and rubber the worst). I am not sure what medicine they put you on. I was started on toprimate, but that didn't eliminate them all and caused heart palpitations. Now I take something with caffeine in it. Its addictive so no refills and the RX has to last 30 days. Mine usually last for a few months because one pill a day (instead of 2 every 4 hours) helps. Its not gone but I function. I get them so bad that I am physically ill, the pain in my head causes my nose and eyes to water and them gets worse from there bringing on vomitting. Getting sick with a migraine I wouldn't wish on my worst enemy.

zedos1 karma

by aura do you mean you can tell when its coming on? if so, yes i do. i have very similar triggers to you. im really sorry to hear about your migraines :( i hope you get better.

LegitDaycare1 karma

Me and my aunt have the same deal, although migraines are on the rare side for me. Got sick 7 years ago and ever since then I've had a background headache, never gone away. No luck on my side with getting rid of them, but my aunt got Botox and that seemed to relieve her of her headache. Not something i'm interested in getting at 17 and definitely not looking for a face lift, but it might be worth a shot for you. Weed hasn't worked either so far, but im still investigating that area.

I do have one question for you though. Currently I'm looking into a possible cause of my headache, which may be my lack of binocular vision. Finding another person with this problem is hard to come by, so do you have any vision issues? Just a shot in the dark but its worth asking since you're here.

Hope you find relief and can get back to a normal life. Your case seems worse, what with the migraines, so seriously, hope you get better soon.

zedos2 karma

Thank you so much! i dont really have vision issues - i occasionally get them when i have bad migraines and i am very sensitive to light allot of the time. sorry i cant be of more help. i was actually considering the botox thing, it was an option a while back, but im jsut not sure about it. I really hope you get better!

Osiris621 karma

Have you had your vitamin D checked? Google Dr. Gominak Vitamin D. Your blood level of vitamin D should be 60-80. Many people have much, much less because we don't go outside, and when we do we wear sunscreen. In some people it can cause headaches.

zedos1 karma

Yea i had jsut about everything checked multiple times - thats not what is causing it. thanks though

Lunacie1 karma

How do people treat you having a headache? I have something similar and I just don't bother to tell people as its mostly met with apathy as if its not a legitimate problem.

zedos3 karma

Yeah! i end up not really telling people unless it comes up or i have to - some situations i have to step out or something and i just say 'i get migraines' people dont usually know how to respond but im used to that. i think most people dont fully understand chronic illnesses, and because mine is one you cant see people treat you like its not really real. like i need to pull myself together. im used to it though and it helps to have supportive family and friends

TheBakersPC1 karma

What do you do to pass the time? How do you relax.

zedos1 karma

I do photography, i work on stuff like graphics design and websites for friends, family, charity stuff etc. i also like reading, playing DOTA, guitar, music. sometimes i cant do some of these things because i have a headache but usually i can find something to distract myself.

TheBakersPC1 karma

Dota you say. What is your favourite hero, pub stomp combo and mmr?

zedos1 karma

:D favorite hero either void or axe. pub stomp combo mayb axe dazzle offlane (pls dont hate me) mmr is 4.6k atm trying to climb to 4.8

SilentlyCrying1 karma

Do you have depression because of the constant pain and there not really being any treatments?

zedos1 karma

im not really sure.

ilovebeermoney1 karma

Have you tried different scents as the cause? I have had daily headaches/migraines myself for about a year and recently discovered it was deoderant smells that were causing most of it. A change to an unscented deoderant made a HUGE difference for me.

My doctors were baffled when I told them of this discovery and were asking me how I could have figured it out. I randomly one day decided to just smell my deodorant up close for like 2-3 minutes and then within a few hours, my migraine was on.

zedos1 karma

hi! that isnt the cause for me, but some strong smells can trigger it

ustu1 karma

I'm close to 6 years now (25 years old) - however no migraines yet.

  1. You said there are medicine you take when it gets really bad - are those ones only for your migraine-days or did you find anything that helps for the ndph?

(saw those medicaments from your proof - however this sheet is from 2012 and maybe you tried a lot of other stuff since then)

For me the only thing i found is pressure - working your head with your hands

  1. beside your migraine-triggers - is there anything that changes the ndph-intensity? For me there are just bad times (pain ~8/10) and good times (3-4/10) but I could not find a trigger yet.

zedos1 karma

Hi! The medicine i take when it gets bad can only be taken a maximum of twice a week (3 if im desperate) so i can only take when i can feel a migraine coming on. I dont actually take any medicine for the ndph anymore - i came off most of it a while back. Now i just take medicine to help me sleep and for when it gets bad. I tried pretty much every headache/migraine medicine and found none of it really helped so we just came off the lot.

If i do too much physical work or walking around too much i usually get a bit worse. Some other things that make it worse are lack of sleep, loud noise (especially prolonged exposure to noise), bright light, flashes, strong smells (spices, cigarettes, rubber, oils, other such smells) the only food based trigger i found is spice. Im yet to find any other triggers.

Hope you get better. I was told its possible i will just grow out of it, but i am prepared for the worst. Good luck!

ustu1 karma

Thanks a lot.

How do doctors usually react? In germany it is like:

"Oh you got headaches - I see - yeah I am very particular sure it comes from X/Y and treatment a/b will absolutely help in 1-3 weeks"

Sometimes I want to leave immediately after those sentences...

zedos1 karma

Yeah that does happen occasionally. Mostly with the younger doctors, it feels like they think they can cure anything and dont realise there is some stuff they cant make go away.

Chay-wow1 karma

Have you tried opiates and have they helped at all?

zedos3 karma

i havent - i hadnt heard they helped.

slogand4 karma

They don't, really, and no doctor worth their salt is going to prescribe you opioid painkillers for headaches/migraines.

My guess is that you've already tried this as it's a common medication, but Isometh? It's usually a red capsule with APAP and Dichlor included. This works really well with tension headaches/migraines.

zedos1 karma

i havent tried that specific one but im fairly sure i was on a similar type drug a while back. i forget all the stuff ive been on though :D

x2dz3 karma

My experience in using them for migraines is they can take the edge off but can also cause rebound headache.

zedos1 karma

interesting. i will have a look

whosaidpanic1 karma

Op have you tried something like this?

A lady that lives in my building said that it pretty much saved her life. She had crippling migranes and after using this product it decreased the amount of headaches she got by like 75%

Im just relaying what i heard.

zedos1 karma

Thank you - i jusy had a read through on the website and i have had some treatments which do essentially the same thing but unfortunately they didnt help very much. Thank you though!

whosaidpanic2 karma

No problem, as someone who gets migranes from time to time (nothing like yours) i would try just about anything. I do find that if i go to sleep right when the symptoms start i can usually sleep through it. I feel your pain bro.

zedos1 karma

Thank you :)

MobileNerd1 karma

Have you had a spinal tap? If so what was the spinal fluid pressure?

My wife was recently diagnosed with Idiopathic Intracranial Hypertension and it's a condition where cerebrospinal fluid (CSF) pressure within the skull is too high. This was causing my wife severe headaches and seizures. She has since had a shunt placed and as long as it keeps her pressure normal then she is fine.

zedos1 karma

i havent, but i think my doctor was thinking about it a while ago. i might ask her again.

jazzb541 karma

Have you tried seeing a headache clinic? I've had great results in one.

I suffered from occasional migraines (2-3 a month that each lasted for 3 days) from 12 years of age to 35 years of age. At the beginning, I was told to take Advil and that I would out grow them at adulthood. Hit 21 and still suffered from them.

Primary doctor referred me to a neurologist when the headaches developed into a daily background headache (2-5 pain) in addition to the periodic migraines. He put me on rescue drugs (Imitrex, Maxalt) and strong pain killers (fioricet with codeine or related). Did all the blood tests, diagnostics, scans etc. Did the whole food and events calendar charting thing and that didn't help. Maybe it was me not tracking very well?

Neurologist started me on various daily medications. Anti-psychotics, anti-depressants, anti-seizure. We upped the dosage until headaches stopped. My mind was in a fog and I failed a semester in college. I decided I would live with pain and be able to use my brain.

A few years ago, the neurologist decided to refer me to a headache specialist clinic. He took me off the opiates and made me stop caffeine cold turkey for a month (coffee, soda, chocolate). He got me a triptan injector and told me to take Naproxen Sodium for pain.

  • After a few weeks of being off the caffeine and opiates, the background headache was mostly gone
  • The injector plus naproxen sodium worked very fast in stopping most migraines.
  • He started me on a very low dose of topiramate and my background headaches and migraines became less frequent.

Today, I get 1 migraine every 3 months. An injection generally stops it, or at least keeps it below a 3 pain.

In other words, keep seeking treatment. Find a headache specialist.

If you want more info, please feel free to ask me. Migraines suck and are so much more than just the pain.

zedos1 karma

I have a headache clinic - in fact he is one of the best in the world in his feild. he is over at great ormond street. he has been a huge help but realistically there is no cure for my specific condition,just things that can help. thank you, and i wish you the best of luck.

loki930091 karma

Hey,

I have this same condition for the last 10 going on 11 years. I've been treating it myself with different pain med and marijuana. It's rough, today is a particularly bad day. Stress also makes the migraines more frequent.

Do you feel that this condition makes you more quick to anger on bad days?

For me when it's a bad day I feel like I'm on a edge of growling it's so silly to be that angry and annoyed but it hurts so much and I can't remember the last time my head didn't hurt.

Because of this condition at one point I had a pain pill addiction and now have a very high tolerance for pain pills. Because of this I have to be very careful how many and how often I take them. It has to be a really really bad day for them.

What has been working/ helping you?

zedos1 karma

i could have written that myself. i feel the same. i have almost forgotten what its like to not have a headache. i just try and distract myself and focus on the things i enjoy. but i can diefinately tell that i am grumpier than i used to be - i just feel very irritable and frustrated sometimes. the medication does help and i am thankful for that. my family has been fantastic but my friends and other relatives dont really understand.

AdviceMang1 karma

Any chance you have had a sleep study done?

zedos1 karma

not a sleep study perse but we have been looking at my sleeping patterns and stuff allot. i also got one of those jawbone fitness wristbands mainly because it monitors my sleep which can be helpful.

AdviceMang1 karma

My best friend had migraines 4 times a week. Turns out a broken nose in little league led to fucked up sinuses which caused bad sleep apnea and bam, chronic migraines.

zedos1 karma

That sucks. did they go away?

AdviceMang1 karma

Yep. 1 or 2 a month now instead of most every day.

zedos1 karma

thats great! it sucks you still have them but its fantastic that they are much less frequent.

zedos0 karma

Just wanna say thank you so much everyone for all your support and kind words. It really means allot. I hope those of you that have similar conditions to me find the right treatment and get better.

zedos1 karma

i have! i think it was helpful, but more because it was relaxing.

dutchtaserface0 karma

I have struggled with migraines for almost my entire life...

Have you heard of of a Gluten Free diet? Could work magic....

zedos3 karma

I have tried it! But alas it didnt do anything except make me miss bread. The gluten free stuff tastes like cardboard.

hybrid_50500 karma

Have you considered trying psychedelic mushrooms? If the doctors haven't been able to find anything physically wrong, I've heard psychedelics can help reset your mind. A family member of mine lives with frequent migraines; I've been trying to get them to explore alternative options instead of popping RX pain killers all the time.

zedos1 karma

I havent tried them. I have heard both good and bad about them

ToxicTomDude0 karma

Have you tried triptans or ergotamines? They are related to the psychedelic drugs triptamines and LSD respectively but are not psychoactive, they may well help with your condition.

zedos1 karma

i have triptans regularly- they seem to help quite allot when i get a bad migraine.

unsupported0 karma

How is the Topamax working out for you?

Because in my opinion, FUCK TOPAMAX (topiramate)! That shit fucked me up the whole time I was on it. While troubleshooting my migraines they gave me Topamax. Shit made me crazy! People were talking about me behind my back and the government was tapping my phones, etc. My wife literally came home one day to me taking apart our landlines because we were being tapped. I also couldn't think clearly. My thoughts were fuzzy and impossible to focus. I was going back to college at the time and my doctor wouldn't take me off of it, but only lower the dosage. I was unable to do simple math problems. FUCK TOPAMAX!

zedos2 karma

Sorry to hear that! I havent too many issues with it, i came off it a while ago but i used to feel nauseous all the time.

SRD_Grafter0 karma

Have you tried any dietary restrictions (such as going gluten, fodmaps, nightshade, or dairy free)? If so, which did you do and did it help? Have you had any body work done (massage or visiting a chiro)?

How has it effected your life? I know you responded with how it effected your social life, but has it made it challenging to be physically or mentally healthy, impacted your schooling or work, etc.

zedos3 karma

2 or 3 years ago we tried to see if it was a dietary problem - so i came off eggs, gluten, dairy, soy, red wine, wheat, just about every known trigger, but none of them worked. the only food based trigger i have is spicy food. i tried acupuncture which i think was helpful in a way, but not because it helped the migraines, more because it helped me to relax. havent tried massages or had a chiro.

yeh it has been pretty challenging. i used to be very fit an healthy, i played rugby 3 times a week in the A team, as well as playing football and cricket regularly. I did most of these sports through school and the onset of the migraines meant i dropped out of school due to the fact that it was too far and i was constantly in pain and exhausted. I havent been regularly to school for 3 years. Its not because i dont want to, because truthfully i was a bit of a nerd, i got A* in most subjects and was on track to go to a good uni, but that isnt possible now. Dropping out meant i went occasionally to a local hospital school - which helped me to get an english and a maths GCSE.

The main stress for me right now is working out what to do now that i dont have qualifications - the most likely thing is that i will try and get an apprenticeship in something like graphics design or photography/video (things im passionate about) A job ive wanted to do for ages is to be a wildlife cameraman for a show like Planet earth or something, but given my health and lack of qualifications it doesnt look too possible right now.

I find the headaches also impact my capacity to think as well as i used to. I try and keep my brain occupied with things like design and photo editing, as well as playing some video games to relax but also to be able to focus on something.

sorry for the wall of text :)

waterboysh0 karma

Just commenting to let you know I used to suffer from migraines all the time. I had constant headaches and got migraines at least once every few days. I take on medicine every night (Amitriptyline) and I have another one I keep on my at all times to take immediately at the first sign of a migraine (Tryptophan). I have a lot of triggers; heat, stress, sitting uncomfortable, bright lights, and many others. Around the beginning of the year I started a ketogenic diet and the frequency and severity of my headaches and migraines has dramatically dropped to the point where I have only taken my Tryptophan maybe 3 times over the last 2 months. Turns out sugar is a major trigger for me. I know everyone's body is different, but it might be something you could try for a month or two and see how your body reacts. If you consider it, check us out over at /r/keto and please ask me any questions.

Have you considered any other dietary restrictions?

EDIT: I see you kinda answered this elsewhere, but you didn't mention restricting carbs/sugar

zedos1 karma

Thank you! I wil definately look into that. i have tried most dietary triggers, but not sugar. I will discuss it with my doctor and see if she thinks it could possibly help. Thank you!

IAMAHORSESIZEDUCK1 karma

Though it was developed in the 1920's to help children with epilepsy and even though it works most Doctors don't like Keto and will tell you no. Look at /r/keto and decide for yourself. I've been keto for about 3 years. It has done amazing things for me. All the best to you.

zedos1 karma

thanks!

Ballinboy-1 karma

I'm curious, have you ever tried medical marijuana? If so did it help?

zedos-1 karma

i havent, but i have heard about it working. im gonna look into it again i think

PmMeYourLegs_-13 karma

Have you tried lobotomy? I hear that helps.

zedos2 karma

um. nope