When will these headaches stop????

[jwporter]

Hello everyone. I feel like I'm getting worse, not better. I had the Retrosigmoid surgery on November 14th for 1.4 cm tumor. Overall the recovery was going well; I had vomiting issues due to inner problems but physical therapy helped. I would have pain in my neck and bland tastebuds but that returned eventually. HOWEVER -

Now I have headaches EVERY morning when I get up. They can be very crushing and they travel throughout my head. Sometimes the headache return in the evening. I also have this intense pressure feeling in my head when I stand up. It pulsates throughout my head and then dissipates. It seems like ever since I have more mobile I have had more pain. Has anyone else experienced this? Has it gone away?I banged my head a couple of weeks ago; could that have caused it? I told my ENT (who did the surgery) and he seemed not to concerned. I am unemployed right now and am scared at the prospects of working again under my current health status. Between this and my tight and sore  back (I'm guessing that's from the 12 hour surgery?) I am feeling real helpless right now.

[staypoz]

jwporter, what you are experiencing sounds familiar to me and probably to other post-surgical headache sufferers who post here.  I'd recommend you get a referral to a headache specialist, pain specialist, or neurologist to help you find some relief.  Some people respond well to drugs, others to Botox, others to physical therapy or a combination of treatments.  Because everyone's experience is different, it's a matter of trial and error to find what will work for you.  There is relief to be found.  Be persistent in finding a doctor who will work with you.  Regarding your concerns about working.  I don't know what kind of work you do, but for the most part, the head pain didn't impact my work.  The headaches might have caused me to be a little late, or needing to find a quiet place for a few minutes where I could pack my head in bags of ice, but I only missed half a day of work when I was in the worst of the throes of my head pain.  I also got a new job during that time. 

Hang in there.  There's a lot of good info on this forum and a lot of support available to you from those of us who know what you're experiencing. 

staypoz 

[Rivergirl]

I am 8 months post op and have daily headaches as well and I an truthfully say I rarely got a headache before.  I was very interested in your morning headache as I have those too.  I have told the Dr and they just brush them off.  I do take Aleve which helps and sometimes ice.  I have had a bad cold this week and I have to hold my incisions area and hold the front of my head when I cough, the pain can be excruciating and that happens always when I sneeze..... It is disheartening to think I will be this way forever cause I do hate it and frankly it is scary.  So I feel your pain, wish i could tell you what to do to make it better, some of us just are unlucky when it comes to headaches.

[jwporter]

Thanks you two. I am glad to see I'm not the only one. Staypoz, I am going to call my neurologist and see if he can help; my ENT doesn't seem that knowledgeable.  I wonder if physical therapy will help? I am going to start my vestibular exercises again. Because when I was doing those I didn't seem to have as many headaches.

[Syl]

Just like Rivergirl, I used to fear that I might be that way forever--with the headaches. I used to get the morning headaches that usually began with tingling at the back of my neck, then spread to other parts of the head as the tingling transformed to pain. What helps most often is applying heat to the neck.

At one point, I was taking 3000-4000mgs of Tylenol daily. I would later learn that Tylenol causes rebound headaches. My neurologist got me off my Tylenol habit with Pamelor. The headaches & their intensity eased up after that.

Little by little, my condition has improved. I'm 3.5 yrs post-op. I still get headaches, but I can go 2-3 weeks without one of those that wakes me up in the early morning. Sometimes I will get a headache 3-5 days in a row. Then nothing for a few weeks.

Because sneezing & coughing is excruciatingly painful, I have been getting the flu shot since I had my surgery. In the past 4 years, I have only gotten sick a couple of times with a small cold, but no flu.

I still keep my heating pad handy at home. I never leave home without Tylenol or my liniment Flanax. I still hope that one day I will go back to getting headaches hardly ever, like I used to before my surgery. But for now, this is how I have dealt with them.

Syl

[Rivergirl]

Syl......coughing and sneezing is still painful after 3/5 years?

[Syl]

Syl......coughing and sneezing is still painful after 3/5 years?

It still hurts a little little bit sometimes.

[Soundy]

Sorry to hear of this problem ... I know where you are coming from and so much of what has been written is familiar

somethings I have found to help and you may be able to experiment with and see if it helps ... headaches at night or when I wake up in the morning have been an issue since surgery July 2007 ... I learned from falling asleep in the recliner that when I sept inclined I didn't get the headaches ... if I lay flat I do ... with trial and error I now have 2 7 inch foam wedge pillow purchased at Bed Bath and Beyond to raise me from waist up ( needed about  12inch lift) with a memory foam pillow on them to mold to and cradle my head ... the inclined position led to lower back pain which I solved by placing a pillow under my knees ... seems like alot to go through to sleep but it was worth the several months of trial and error it took me to get it working for me

I still get headaches other than the ones from laying down flat ... I do the hand over incision site and hand on forehead when I sneeze or cough and tuck chin to chest to avoid spraying ... my family bless their souls thing this is funny ...

I also had more headaches the more mobile I became after surgery ... I think for me it was due to over doing it ...bending over is an issue and one I have learned not to just bend over to pick up anything ... I get a sudden hammer to the back of the head pain that if I stand still and take a few deep breaths usually dissipates ... if not I have Tylenol washed down with something with caffeine that usually takes care of it ... hydrocodon if that doesn't work ...

at one point  I was using  60 hydrocodone a month to cope with pain ... got it down to 30 at about 2 years out ... got on lyrica and have only used about 45 hydrocodone in last year ... check on lyrica with your doctors ... it has been a life saver for me  ...

hopefully your headaches won't be long term like mine ... but if they are know that we are ... talking things out here with people that understand has been great ... sometime talking to friend and family is like talking to a wall ... they mean well but can't grasp that a Tylenol doesn't always cut it ...

as for doctors , if you are not getting answers from the ENT go to the neuro or headache specialist ... I went through several doctors to get pain controlled ...some didn't know how to proceed and didn't help me at all ... they are people and may know alot in their fields , but if we lay out of their field they can't always help ... my PCP was great help researching and tracking down doctors for me ... and when that didn't work he talked to doctors in other states that were out of my reach and worked out a plan that lead to trying lyrica that helped me

lyrica is expensive ... my current dose would cost me about $430 a month ... my insurance will only cover 120 of that ... but Pfizer has a program that helps patients that can't pay for it and I qualify so get it for free ...

hope something I typed is of help ...

[designergal]

Hello All,

I just had my one year anniversary from my surgery and have suffered from headaches since!  I will say that they are getting better.  I like some others on here took Tylenol and Motrin and found that some of the headaches were rebound!  I did not and do not want to take any "drugs" (mom of 3 small children and a full time job!)  I started taking Valerian root when the headaches start...usually my neck and shoulders get tight... and Aleve in the evening before bed.  I have tracked my headaches as mostly stress,  I get them mostly at night and when I wake.  At night, ususally an intense dream will bring them on.  I also sit up in bed for 30 minutes or so before getting up!  I do not blow my nose or stretch either!
I have been through conventional PT, Myofasical PT, acupuncture, and now seeing a Chiropractor weekly.  Myofasical did help a lot but I think the Chiropractor is helping the most.  He uses ultrasound on my shoulders and neck.  I have been going to him for the last 7 weeks, 2 times a week and have noticed a huge difference.  I now can actually function during a headache...before a headache would paralyze me until the Valerian kicked in! Now, if I get one, I usually just sit down and rub my neck and head until until the Valerian kicks in.
Good Luck!

[designergal]

I also forgot to mention that I also use a product called Raw Ice.  Works wonders...acts as an ice pack for 2-3 hours.  I typically use at night....but on a bad day I will apply in the morning and instantly feel relief which last all day!

Good Luck!

http://www.rawhealthintl.com/index.php?option=com_content&view=article&id=48&Itemid=55

[leapyrtwins]

Sorry to hear about the headaches.

I had retrosig almost 5 years ago and I'm fortunate; I don't get any headaches.

Capt Deb is a Forumite that has had many ups and downs with headaches and headache treatment.

Search her posts - you might find them helpful.

Best,

Jan

[Mei Mei]

Try Myofacial Release Therapy.   It helped my headaches within two days and put me to sleep in the therapist's office.   The headaches decreased after that first treatment.
Mei Mei

[jbbrown15]

I suffered from the intense pressure in my head upon standing.  I saw a headached specialist neurologist (Jefferson Headache Center in Philly) and started treating for increased intracranial pressure with Diamox.  It has helped immensely with both the pressure and my headaches.  I highly recommend a neurologist who specializes in headaches.

Jean

[jwporter]

Try Myofacial Release Therapy.   It helped my headaches within two days and put me to sleep in the therapist's office.   The headaches decreased after that first treatment.
Mei Mei

Thanks Mei Mei. I'm going to check this out along with the chiropractor as well. It's 2:45 am and I awoke to pain in my neck that went all over my head and face. Worst one yet. I took 1 500mg tylenol  (I've been taking 1-3 Tylenol a day lately) along with some natural headache/migraine stuff.

I was actually doing pretty well, but we just had a baby which has been throwing our sleeping off. I know I can get through this, and I pray that these headaches will just go away eventually.

[jwporter]

I also have another question. These headaches we get, are they considered migraine pain related? I'm taking this homeopathic migraine stuff, and I wasn't sure if there was a real point for me taking it or not....