Questions for the headache sufferers

[hasovschib]

Hi, i had retro surgery for my AN about a year ago and for like 7-8 months now i have daily headaches. I still dont know if the headaches are from my AN because they seem to start in the back of my head on the AN side (sometimes they start on the opposite side. Sometimes they just start in the forehead area (so random)
But the pain is not that severe when it stays in the back of the head. The most severe pain is when the pain spreads (migrates) to the front of my head, my head hurts right in my forehead. (that pain is a killer)

So if my headaches are from the occipital nerve damage from the surgery, shouldn't the  pain stay in the back of the head on the surgery side?

The surgeon told me that if it was pain from the occipital nerve damage the pain would stay  in the back of the head and neck.
Did any of you that knew that their headaches were caused by their occipital nerve have head aches in the forehead area? or did they only have them in the back of the head on the AN side?

My incision was a small one 3 - 4 cm. And he only used some fat and earwax to cover the hole... So no Mesh or metal etc.
If i chill and do  nothing the pain is not bad. But if i try to work out, jog even bend over the pain becomes unbearable.
So maybe it's my bed  sleeping position

I guess i want to know what causes my headaches. The doctors are not paying attention so i thought i'll ask here

Any advice, pointers from ppl who had these problems fixed would be great.
Sry for my rants and my english 

[staypoz]

My headaches also involved my forehead.  Have you gotten the ANA brochure about headaches?  You should get a copy and take it with you when you see your doctor.  If you haven't already seen  a pain doctor or headache specialist, you should do so and take the booklet with you.  Many are not familiar with the post-op headaches we endure.   There are lots of good suggestions on this forum for things that might help you cope with the headaches.  You just need to be persistent to find a doctor who will work with you to find what will work for you. 

Good luck. 

staypoz
 

[hasovschib]

My headaches also involved my forehead.  Have you gotten the ANA brochure about headaches?  You should get a copy and take it with you when you see your doctor.  If you haven't already seen  a pain doctor or headache specialist, you should do so and take the booklet with you.  Many are not familiar with the post-op headaches we endure.   There are lots of good suggestions on this forum for things that might help you cope with the headaches.  You just need to be persistent to find a doctor who will work with you to find what will work for you. 

Good luck. 

staypoz

Hi, staypoz and thank you for answering. Idk about any brochure. Where can i get this brochure?
And you say "indolved" it means you got rid of your headaches? if so how did you do that? 

[CHD63]

Hi hasovschib .....

The booklet on post-treatment headaches is available through the ANAUSA web site.  See:  https://www.anausa.org/resources/ana-store/category/booklets

Each different booklet is $1.50 or they are free to members of the organization in the member-only section of the web site.

Hope that helps.

Clarice

[hasovschib]

Hi hasovschib .....

The booklet on post-treatment headaches is available through the ANAUSA web site.  See:  https://www.anausa.org/resources/ana-store/category/booklets

Each different booklet is $1.50 or they are free to members of the organization in the member-only section of the web site.

Hope that helps.

Clarice

Thank you...

[jaqiday]

I also had retrosig a year ago. I have headaches 4-5 days a week. Some are really bad, some are not. I get by with tylenol or advil and fortunately and haven't needed anything stronger. I get two types of headaches - ear to ear (sometimes with neck pain),I use tylenol and hot compress for these.  All over my head particularly above my ears and forehead, more like a migraine - these advil seems better.  I also notice when I am overactive (which used to be normal activity) I tend to have a bad day after. The weather affects how I feel, cold damp doesn't help at all.  I also have days with only one dose of painkillers and other days I take them all day. I now just try to roll with how I feel. If i feel like laying down, I do. I am usually paid back with feeling great for several days after.  I haven't felt the need to seek treatment for headaches. My neuro said it would get better with time which it has but they definitely haven't gone away.

update - 14 months out and having weeks with minimal or no headaches.  I still seem affected by damp weather, now i just plan around it.  When my head hurts, I take something quickly for pain rather than wait till it gets unbearable, seems to work better and I am taking less pain meds. Still just taking tylenor or advil. Saw a new neurologist (not just my surgeon) and I did get prescribed an ssri but I am not a fan so not taking it.  He also said recovery can take 2-3 yrs for a tumor the size of mine. 

There is light at the end of the tunnel.

[hasovschib]

I also had retrosig a year ago. I have headaches 4-5 days a week. Some are really bad, some are not. I get by with tylenol or advil and fortunately and haven't needed anything stronger. I get two types of headaches - ear to ear (sometimes with neck pain),I use tylenol and hot compress for these.  All over my head particularly above my ears and forehead, more like a migraine - these advil seems better.  I also notice when I am overactive (which used to be normal activity) I tend to have a bad day after. The weather affects how I feel, cold damp doesn't help at all.  I also have days with only one dose of painkillers and other days I take them all day. I now just try to roll with how I feel. If i feel like laying down, I do. I am usually paid back with feeling great for several days after.  I haven't felt the need to seek treatment for headaches. My neuro said it would get better with time which it has but they definitely haven't gone away.

I guess i'm in the same boat as you. We have almost the same symptoms. I try not to take pills any more. I take them only when the pain is unbearable.

Taking pain killers everyday for a long period of time is very bad for your body. Not to mention the headaches are not that often after i stopped taking those pain meds. Most of them can give you rebound headaches if you take them for long periods of time.
You should try it for 2 - 3 weeks and see what happens

I'm gonna go to my surgeon this month, to have him and his neurologist examine me and hopefully find the cause.

[Soundy]

So maybe it's my bed  sleeping position

I guess i want to know what causes my headaches. The doctors are not paying attention so i thought i'll ask here

I am 8years and 8 months out and still have headaches and not enough help from doctor. My PCP is honest and says he doesn't know what to do for me and neuro said give it time a year out and the last time I saw his replacement 3 years ago he said give it time.

I have to sleep slightly elevated or I get headaches that if I cant stop them leads to vertigo and vomiting that makes my head ache all the more. My primary gives me hydrocodone to stop ones I cant stop with my trial and error home remedies. I have only used 3, 10/325 caplets in the last 5 months which isn't a lot but my goal is to not need them. but I like to have them on hand when needed.

Neuro told me headaches stemmed from nerve damage in my neck from the position my head was clamped in during surgery. I have went through countless pillow combinations to get something that works for me. Too high an angle and it causes lower back pain which meant adding a roll under knees. I have a Miracle Bamboo pillow on top of a hospital style wedge pillow. It cradles head and neck. I tried solid memory foam pillows and they don't work as well as the Miracle Bamboo one that has shredded memory foam.

As for headaches and treatment. Headaches I get from exertion start across forehead and is a burning pain that turns to an ache. This will spread to entire head. Hot shower helps or a cup of strong coffee. A caffeine OD. I am not a coffee drinker but was given a prescription of Fioricet . The Butalbital  in it made me so hung over feeling I had to quit taking it. I can often stop a headache if early on I drink a cup of strong coffee. If it doesn't stop it I follow up after 30 minutes with a dose of over the counter Tylenol.

Headaches from sleeping and head getting out of position start in neck and move to AN side. Hot compresses sometimes help. or hot shower with massage head aimed at the back of my neck. If it doesn't arrest it I go to my coffee method. I am down to 2 or 3 severe headaches a week. Sometimes I luck out and go a week without one.

I have given up on ever being headache free and have adjusted and learned to live with them. I kept a headache journal for a while and by tracking what I had done in about a 12-24 hour period before a bad one have learned to avoid them. This means resting more when I can, not bending over as this causes me to feel like I have been hit in the back of the head by a sledge hammer. Trying not to get too hot or two cold as extremes either way can trigger headaches. Avoid caffeinated drinks aside from my medicinal coffee. If I am drinking them often then don't for a few hours it triggers headaches.

I hope some of this is a help and doesn't cause fear of always having headaches.

[hasovschib]

So maybe it's my bed  sleeping position

I guess i want to know what causes my headaches. The doctors are not paying attention so i thought i'll ask here

I am 8years and 8 months out and still have headaches and not enough help from doctor. My PCP is honest and says he doesn't know what to do for me and neuro said give it time a year out and the last time I saw his replacement 3 years ago he said give it time.









 

8 years, damn. Reading this forum always bums the hell out of me. Never seen anyone who got rid if their headaches without some other form of surgery.
Doctors saying "give it time" rly enrage me. How much time is there to give tho? Especially when you feel like crap every day and you cant work, you can't exercise. You just have to "wait it out".
Every time i try to be more active i regret it the very next day when the pain hits me like a bold of lightning.


I tend to sleep without a pillow, it kind of helps me out more. I feel way better than i was sleeping elevated.
I even stopped taking over the counter medicine. i only take them when i cant take the pain anymore (once a week)
Coffee and Coke helped me for a while but after a while it made them worse. So i stopped drinking them, stopped drinking alcohol, chocolate. At this point i will try anything.
Gonna see my surgeon and another specialist in 2 weeks. I will update and tell you what they've told me

[Soundy]

good luck. I know some on here have solved their headache issues. I have some times that are better with mild headaches and times like last several months that are worse.

just don't give up.

Lyrica used to help me and took it for several years. but it stopped. I rarely take anything other than my strong coffee. The only medicine I take daily is Losartan for blood pressure.

My girls are in Winterguard with the High School. Competition Saturdays mean up around 6 out the door for early practice, load up on bus and then sit in gyms watching shows all day. If we have an early performance time this can mean 10 or 12 hours. Then I am no good for two or three days. I do get up and walk around or go lay on the bus. People say just don't go. I am not going to miss these last few years of my kids childhood due to headaches. I just spend a couple days mostly in bed then go again.

My thoughts and prayers are with you

[welderguy]

After having tumor removed 6-23-2013 I discovered laying flat caused severe headaches.
Started sleeping in recliner positioned near wall so it could not fully recline and it worked for me