Juro

This is a very difficult disease to deal with. A positive attitude and prayer are key to being successful. Does anyone deal with headaches? I was diagnosed in '06 and had the cancer in every segment of my brain. It shrunk a little, but I will never be operable. I accept all my stable diagnoses as thankfulness. I get a headache everyday, some lasting all night. If it weren't for the 7 grams of pred. per day, I don't know if I could do it. It gives me relief until they wear off by 6 pm....then it starts the headache again. Pls. let me know if you get the headaches and what you do for them. I wish all well & keeo you in my prayers.

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Hi, Juro. I was getting frequent headaches and they're quite different than the ones I experienced before my surgery. Much more severe - felt like a knife cutting through from my sinus' and bouncing off the back of my head. Fortunately, I'm allowed to take aspirin and that works for me. That and another nap. I'm trying not to sleep as much, though. I needed daily naps after the surgery but have been able to wean off of them lately. I don't want to sleep my life away. :) I hope that you find something that works for you. Many are successful with meditation. I just figure that there's pressure in my head from the tumor and it's letting me know it's there. I try to ignore the bugger as best I can. Good luck to you!

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Thanks Johol, I'm sorry you went through this, but it helps knowing I'm not alone. I probably take too much Excedrin, but the headaches are constant..when I wake up in the middle of the night, it can be pounding. Today was the first day in about 2 yrs. that I woke up without a headache. It didn't start for an hour after getting up. It was amazing. I also have had ringing in my ears for 18 years which makes it more intense. Thanks for your advice and my best to you. Stay positive....

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Hi, Juro.

I have stage II oligodendroglioma, with two inoperable brain tumors (one in the left temporal lobe and one deep within and lateral to my pineal gland). I have been through one year of chemotherapy and have every-three-month MRIs for surveillance, currently stable.

As far as headaches are concerned, I started getting migraines at around age 12 (scans negative at that time). Their frequency would wax and wane and, luckily, throughout the years, they were rare. I feel that, at that time, my body was struggling to get puberty started (hormonal fluctuations triggering the migraines), but I weighed about 83 pounds in my early teen years and really had very little body fat to get the reproductive hormones activated to start my first menstrual cycle. I was on the track team in high school and had menarche at age of 15. My cycles did not have any regularity whatsoever until I was in my early 20s. As of late, I have been getting them when I have my menstrual cycle, for the last couple of months. I would rarely get them before that. I have heavy-flow cycles, so I adjust for that and the actual migraine starting first with "natural" methods such as trying to get more rest, relaxation techniques, and because I am a coffee drinker (one cup each morning) and have hypoglycemia, I make sure to have regular intervals of this to, hopefully, not trigger a migraine. I always drink plenty of water. Sometimes I will also take a wash cloth, get it very, very warm (not scorching), and place it over my face to a relaxed-breathing regimen, doing this a few times, and then I will "shock" this with rinsing the cloth in very cold water, as this will "tweak" the vasodilation and constriction of vessels that cause this terrible pain; quite often, this will decrease the intensity of the pain. I also notice that if my migraine pain is on the right side (most of the time, it is on the left), I am more likely to be nauseated, sometimes emesis. Sometimes I will also experience a gradual and progressive numbing of my fingers and arms, for which I have had contractures - that is, thankfully, a more rare side effect. I have never had a stroke and do not have epilepsy. Through the years, as I educated myself more and more about migraines and my personal scenario, I also ruled out any food triggers to initiate a migraine headache. If possible, I rest in a darkened room. With migraines in particular, there is a heightened sensitivity to light.

If all else fails and a migraine episode remains strong and incapacitating, I take a 20-mg nasal spray unit of Imitrex; this works very well for me. I have had migraines during my life for which I would rather go through childbirth again. When my father passed away almost four years ago, I thought, through my intense grief, that the headaches would be more frequent, but they actually backed off, and their frequency history does not indicate to me any increase due to my tumors, nor since. For me personally, I think it more or less is caused by the hormonal changes during my menstrual cycle and all that goes with it. So many causes to have a headache, let alone the different classifications of the headaches themselves. For migraines in particular, this is a neurological condition and is dealt with differently than, for example, a sinus headache which may perhaps be due to an allergy, a cold, etc.

At the present time, when I do get a migraine, almost 100% of the time, it will be during my menstrual cycle.

I am so sorry for your frequent bouts with those nasty headaches; they are awful. I hope you will receive more relief, soon.

Yes, I advocate being positive and making adjustments to have a sense of balance, among something so very cathartic and life-changing. Continued good self-care.

I also wish you prayers and good thoughts. I hope that there may be something effective that can be done for you to have a better quality of life, as far as lessening the duration and frequency of your headaches.

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Hi Debra, you have been through so much, I've had 3 migraines in my
Ife and if you haven't had one, no one can really explain the pain. I had to lie in a completely darkened room. It was a headache & pressure for 3 weeks straight that alerted me to go to the doctor. After my exam with him, he told me to go to Northwestern the next day. I knew something was wrong because you can't get into this hospital the next day, he paved the way for me. I then had a brain biopsy and was told the result. It was an out of body experience, to say the least. I was given chemo pills for 2 1/2 years with massive amounts of steroids. All I could do was sleep, probably 20 hrs a day and eat. I took the meds, and they started weaning me after 2 1/2 years and I have been going through lots of life changes. Everyone always says they can't believe how good I look, but if they saw the inside...it wouldn't be so great. But, I know how fortunate I am after seeing how many others are so much worse. I am a better person since I developed cancer. My dentist's mom, close to my age, developed exactly what I have, we went to the same doctor and she only made it about 2 1/2 years. It's God's choice, not ours, you have to wonder why. I wish you many years, prayers and strength.

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Hi Juro,

Yes, I have been getting frequent headaches as well. I grew up with headaches, and basically thought that it was normal - and then when I was 30 I had a grand mal seizure and found out I had brain tumor that they think I was born with. After the surgery, I still got some headaches, but I don't remember them being too bad all of the time. Then, the company I had been working for had a company lay-off, and I was one of the people who lost my job. I believe that since that time, my headaches have gotten worse. I got another job, but the headaches were not good, so I talked to my neurologist and he put me on topamax. Well, the drug helped with the headaches, but changed other things about me and ended up causing me to be suicidal. Luckily I asked my doctor to lower my meds (for a different reason) and realized what I had been thinking and made him get me off those meds.

Now, I basically get headaches every day and am also trying to figure out what to do. I found out at my support group last week that there is a doctor who is a plastic surgeon, but specializes in things to help get rid of headaches? I have not contacted him yet, but may be doing that to see if it might help. So I guess that might be an option for you as well? Again, I have not "dared" to look into it yet, but the person who told me about it said it did help her... and the nurses said I should probably give it a try. So, we shall see what happens.

Good luck with everything, and definitely keep the positive attitude and prayers! I believe that our own actions do help us to continue with our lives and also to try to assist others as well!

Take care!

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Hi, Juro.

Yes, I understand what you mean by how people may be surprised if we "look good" and that it's difficult to believe we have brain tumors and/or brain cancer. This past September, at the wedding of a daughter of friends of ours, at the very end, when we were helping to clean up, clear things out, etc., a middle-aged woman, whom I had never met, approached me and could not believe how much time I spent on the dance floor, looked good, she said she would pray for me - the whole nine yards. I asked her if she knew about me from our friends (parents of the bride), but she said no, but "through the grapevine." Either she knew that I would not be offended with such an abrupt approach, especially about he subject matter, or struck it lucky, but I didn't expect that, and during the time when we went to the buffet to prepare their plates, I felt many eyes on me from others whom I never met, and I could imagine the whispers of "that's the woman with brain cancer"...

Those of us who continue to function and feel well are very grateful, and I hope that scenarios such as these help to educate people that having cancer is not an automatic "death sentence" or mortality cut short, and many of us function fully and feel well. Depending on the medical therapy, some of us do not lose our hair.

It is definitely an ever-changing year leading into spring, as I continue to look for a different job (hopefully something that pays better), and my youngest child is graduating from high school. I currently do medical transcription out of my home, but pay is by the line, so if my fingers are not moving, I am not making any money. I used to work in the hospital setting (1984 to 1992) before my children were born and am trying to be in the hospital setting again, but much has changed over the years, and I want to get out of transcription altogether. I have also been applying at other companies, etc. You really don't find this position (medical transcription) within the facility site anymore - it is mostly remote out of the home, or outsourced. I am qualified for a few other avenues, and hope as the year moves on, it will be my time to be on board, so to speak. In fact, I transcribe for accounts at Northwestern Memorial Hospital (cardiology, hepatology, and transplant) and endocrinology at the University of Chicago, but work has slowed down as clinicians are turning to less expensive avenues, and we have had three pay cuts in the last two years. It's really shameful what has happened. This is a skill for which one is continually learning, and these medical records have to be as accurate as possible, and it has gradually but surely gone belly up over the years.

I will continue to live my life, and with that life being naturally busy, that is very helpful, too. I hope all of us are met with the most peace, health, comfort, and fulfillment in our lives, despite this very unwelcome entity we have to deal with.

Alicatt, I hope also for you that your headaches can be diminished and that there is something out there without any contraindication that will give you relief.

Yes, Juro, there is much we can do to be good to ourselves physically, but life itself, of course, has no guarantee for anything, so we roll on. I do have much to feel blessful and grateful for. I do not cower in the shadows. :)

I feel compassion, support, and send prayers to all of you. It feels nice being able to correspond with many wonderful people on this site. I wish it were a different subject matter - music, travel, etc. :)

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We all do share something we would rather not be a part of, but we all know what we are going through. My husband is such a tremendous support, but it's impossible to know what we deal with daily. I always tell my family that my condition controls my day. It's hard to plan too far ahead. I don't advocate taking steroids but I take 7 mgs. in the am that keep the headaches at bay. I couldn't make it through the day w/o them. We have tried getting me off them for 5+ years, but my dr. doesn't think my body is making steroids anymore. I guess the body naturally makes about 5 grams daily. He told me for my quality of life to take the 7 mgs and try to lower if I can, but said under 10 mgs., no problem. It also helps with body pain, I have severe arthritis, and this last October had my 3 rd knee replacement. I'm jealous Debra that you're able to be on the dance floor! So, if you we're interested the Pred. helps, maybe you can get away with a very low dose. I've had headaches that have lasted for months 24-7. Also a friend told me when he was a kid, his Mom used to put Ben-Gay on his head with a warm washcloth. I've tried it and it does seem to help, maybe it's just that you're feeling something other than your head pounding. Also, I've been on Topamax and it made me sick to my stomach..I literally have a huge bags of meds that I've tried & couldn't take. Someone would think I'm a drug dealer! Well, let's all keep plugging forward, we're all in each other's corner! That helps...also, to those who are Christian, St. Peregrine is the saint of cancer patients..he helps! I could go on & on with all my saints!! Stay strong!

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Dear, Juro,

When you mentioned St. Peregrine, I have a pendant for which my mom got me a medal with his image on it, which is joined with a crucifix one of my mom's friends got me that was blessed by a bishop, and one of my dad's rings (he passed away in March 2008 - ( miss him terribly). This is a comforting trilogy.

When I was first diagnosed, I was put on prednisone because of swelling within my brain with fluid (hydrocephalus), and this dissipated a few weeks afterwards. I then was tapered off of it. Yes, if it is possible to get off a steroid, it is better. I believe I was on 10 mg per day before the taper.

Luckily, my migraines usually are not too frequent, but I have had some real earth-shattering headaches. I am grateful that the Imitrex helps.

It is so very true that our self-care physically and our outlook, albeit any challenges from an emotional standpoint sometimes, can really strengthen us.

Let us all stay strong. It is good to know that we are the ones in charge of that!

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