› Forums › General Melanoma Community › Really BAD Headaches-Remedies?
- This topic has 14 replies, 7 voices, and was last updated 12 years, 10 months ago by
Jim M..
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- June 21, 2011 at 1:48 pm
Hello Folks! Back again trying to glean some knowledge as i'm all cleaned out. Brief history: 12 plus brain mets 1-26-11 found. SRS and whole brain 2-1st thru 2-25th. Yervoy / IPI 3-1st thru 5-? (4 rounds complete.
Hello Folks! Back again trying to glean some knowledge as i'm all cleaned out. Brief history: 12 plus brain mets 1-26-11 found. SRS and whole brain 2-1st thru 2-25th. Yervoy / IPI 3-1st thru 5-? (4 rounds complete.
a couple of weeks ago i began having headaches- last week up till now been agonizing 24 hour (almost) affair. I have not changed any meds. since beginning Kepra which i takr 2 1/2's per day (yes, i should be taking 2/day); vicodin (hydrocodone) that i took 3 4 max./ day after 2 pm to help with "general aches and pains , and frankly "well-being".
After 7 at night i take 1 to 3 .5 Avitan.
Dr. yesterday prescribed Nuerontin -300 mg./1 at nite.. i took i last nite and not sure if it helped. ONLY thing that does seem to help is Alka-Seltzer (good 'ole aspiran…….but have many small brain tomurs-some with minor hemmorage "halo", so i probalbly shouldn't be.
Any Advice Please! has anyone had these headaches pop up after above experiene? I going crazy.
Love, Grady.
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- June 22, 2011 at 12:50 am
Hey Shady Grady, sorry I don't know enough to help you.. just saw all these views and no replies and wanted to tell you I'm terribly sorry to hear about your headaches -they sound unbearable.
Nic posted recently that her GSK BRAF brain met trial has made her stable for the first time in three years ( YEA!!!!!) – I'll link you to the post to make it easier to find. http://www.melanoma.org/community/mpip-melanoma-patients-information-page/gsk-braf-brain-met-trial-results-are
Again I know nothing Grady, but are you not on any steroids? Can they refer you to a pain clinic to help with the pain?
Thinking of you Shady, hope you get some relief soon, linda
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- June 22, 2011 at 12:50 am
Hey Shady Grady, sorry I don't know enough to help you.. just saw all these views and no replies and wanted to tell you I'm terribly sorry to hear about your headaches -they sound unbearable.
Nic posted recently that her GSK BRAF brain met trial has made her stable for the first time in three years ( YEA!!!!!) – I'll link you to the post to make it easier to find. http://www.melanoma.org/community/mpip-melanoma-patients-information-page/gsk-braf-brain-met-trial-results-are
Again I know nothing Grady, but are you not on any steroids? Can they refer you to a pain clinic to help with the pain?
Thinking of you Shady, hope you get some relief soon, linda
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- June 22, 2011 at 12:50 am
Grady,
Ahhh, Keppra. What a lovely anti-seizure medication. I took it for several months trying to get my partial seizures in control. It was great – I dropped 20 pounds. Unfortunately, it didn't work on my, and I turned into a raving b*tch while I was on it! My husband and co-workers were so happy when I stopped taking it.
Anyway, one of the many side-effects of Keppra can be headache. In fact, if you look at the list of possible side-effects, it's just as likely as somnolence, asthenia, or infection. If you've increased the amount of Keppra you're taking, it may be responsible for your headache.
Just a thought…
Chris
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- June 22, 2011 at 12:50 am
Grady,
Ahhh, Keppra. What a lovely anti-seizure medication. I took it for several months trying to get my partial seizures in control. It was great – I dropped 20 pounds. Unfortunately, it didn't work on my, and I turned into a raving b*tch while I was on it! My husband and co-workers were so happy when I stopped taking it.
Anyway, one of the many side-effects of Keppra can be headache. In fact, if you look at the list of possible side-effects, it's just as likely as somnolence, asthenia, or infection. If you've increased the amount of Keppra you're taking, it may be responsible for your headache.
Just a thought…
Chris
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- June 22, 2011 at 2:17 am
Hun, I have no experience with the WBR. But I DO have lots of experience with headaches, as you know 🙂
One thing I know for sure is that any opiods can cause a raised ICP. Earlier on, at one point, I eliminated the opiods and found my headaches improved. These days I know when my headaches are due to swelling/raised ICP, and when they're bad enough I have a chat to my doc, and start steroids- but you know how much I love that stuff [insert sarcasm], so I have to be pretty bad… but once I start to feel improvement, I'm always glad (apart from the side effects) I took them. (Frankly, if it's swelling, NOTHING relieves the pain other than steroids for me) But, you've got a few medications going on there, which I don't know anything about- so it could also be those, or interactions between them, causing the headaches. Have a chat with a pharmacist if possible?
When was your last scan, Shady? Maybe it's time for another scan, mate… Check out if there's any swelling increase since the last, or anything else that might be going on?
I only had scans last week, so I know for a fact things are stable in here for the time being, but I had an increasing headache over the past few days. Stupid me! I'd been sleeping on a regular pillow rather than my latex, moulded one, and the neck pain was causing it. (Switched last night, and good as gold this morning)
Really- you need to see someone about it. *stern look*
Nic
xxx
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- June 22, 2011 at 2:17 am
Hun, I have no experience with the WBR. But I DO have lots of experience with headaches, as you know 🙂
One thing I know for sure is that any opiods can cause a raised ICP. Earlier on, at one point, I eliminated the opiods and found my headaches improved. These days I know when my headaches are due to swelling/raised ICP, and when they're bad enough I have a chat to my doc, and start steroids- but you know how much I love that stuff [insert sarcasm], so I have to be pretty bad… but once I start to feel improvement, I'm always glad (apart from the side effects) I took them. (Frankly, if it's swelling, NOTHING relieves the pain other than steroids for me) But, you've got a few medications going on there, which I don't know anything about- so it could also be those, or interactions between them, causing the headaches. Have a chat with a pharmacist if possible?
When was your last scan, Shady? Maybe it's time for another scan, mate… Check out if there's any swelling increase since the last, or anything else that might be going on?
I only had scans last week, so I know for a fact things are stable in here for the time being, but I had an increasing headache over the past few days. Stupid me! I'd been sleeping on a regular pillow rather than my latex, moulded one, and the neck pain was causing it. (Switched last night, and good as gold this morning)
Really- you need to see someone about it. *stern look*
Nic
xxx
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- June 22, 2011 at 6:46 am
Hi Grady,
I just finished the WBR and have had some weird setbacks. I am grounder to a wheel chair, my legs don’t work, ESP left side, having double vision, then seizures, then huge embolisms, no headaches though. I too am on keppra and 12mg. Fortecortine as well as the roche 5185426. I take tamesta at night.
Next week I start 10 doses of linac radiation. I am praying for quick recovery so I can make back home this summer to Washinton State.I wish I could give you some advice. I would definitely talk to a pharmasist.
Prayers and loving light surround you!
Shelly in Switzerland -
- June 22, 2011 at 6:46 am
Hi Grady,
I just finished the WBR and have had some weird setbacks. I am grounder to a wheel chair, my legs don’t work, ESP left side, having double vision, then seizures, then huge embolisms, no headaches though. I too am on keppra and 12mg. Fortecortine as well as the roche 5185426. I take tamesta at night.
Next week I start 10 doses of linac radiation. I am praying for quick recovery so I can make back home this summer to Washinton State.I wish I could give you some advice. I would definitely talk to a pharmasist.
Prayers and loving light surround you!
Shelly in Switzerland -
- June 22, 2011 at 1:46 pm
I also was on kepra between a craniotomy and gamma knife and it not only gave me headaches but it caused bad muscle spasms in my low back where I have a ruptured disc.
You might consider acupunture as a relief for the pain. It doesn't work for everyone but if it works for you, it will be dramatic.
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- June 22, 2011 at 1:46 pm
I also was on kepra between a craniotomy and gamma knife and it not only gave me headaches but it caused bad muscle spasms in my low back where I have a ruptured disc.
You might consider acupunture as a relief for the pain. It doesn't work for everyone but if it works for you, it will be dramatic.
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- June 23, 2011 at 5:19 am
Hello Grady,
It sounds terrible, what you are going through!
With the risk of making a very studip remark, was your pituatary gland tested?
I know its a known side effect of ipilimumab, and can only be detected by headaches and fatigue.All the best,
Sabine
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- June 23, 2011 at 5:19 am
Hello Grady,
It sounds terrible, what you are going through!
With the risk of making a very studip remark, was your pituatary gland tested?
I know its a known side effect of ipilimumab, and can only be detected by headaches and fatigue.All the best,
Sabine
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- June 23, 2011 at 10:25 pm
I had what you are having. After 4 rounds of Ipi I had 2 weeks of severe headaches and nothing seemed to help. My doctor ordered an MRI which revealed a swollen pituitary gland ( a side effect of Ipi). I was taken off Ipi and put on a steroid.
My advise is get an MRI as soon as possible!!
God Bless,
Jim M.
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- June 23, 2011 at 10:25 pm
I had what you are having. After 4 rounds of Ipi I had 2 weeks of severe headaches and nothing seemed to help. My doctor ordered an MRI which revealed a swollen pituitary gland ( a side effect of Ipi). I was taken off Ipi and put on a steroid.
My advise is get an MRI as soon as possible!!
God Bless,
Jim M.
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