Cluster Headache sufferers from surgery


#1

I have been on several different meds and after a couple of years of trying different ones, calcium blockers worked for me. I am on a small dose that I take every day. Just wanted to tell you all because the only thing worse than a Brain Aneurysm is a cluster headache so I know how it feels to have no hope and be in that state. Be strong!


#2

Bingo…cluster headaches??? My son has suffered terribly for soooo many yrs with cluster headaches…they did do all kinds of tests…and said no anerusym…but now i wonder since i have them…did you have aneurysms too?? when my son gets them he says it is like a stabbing severe pain in his temple…it is the worst pain in the world he says…he gets sick…his eye droops and sometimes his temple gets swollen. Is there a connection with cluster headaches and aneurisms???


#3

I myself have suffered with cluster migraines for 25yrs plus. went to numerous neurologist, had all the cat scans, and mri’s and was always told everything was normal. I finally discovered that my migraines were triggered by certain foods. I now cannot eat anything containing nutrasweet. As a connection with aneurysms it never occurred to me until i read this. My 37yr old brother suffered a grade 5 cerebral aneurysm rupture in june 2010. He spent 6wks in ICU and has been in a LTAC ever since. He progressing well in physical therapy, still has trouble speaking and doing anything purposeful with his hands, remains incontinent of b/b and has just recently began taking sips of clear liquids, still has his feeding tube. Yes we have a long way to go but we also have come far. His doctors in the beginning only gave his a less than 10% chance of survival. My brother is a fighter and i believe that (along with prayers from all over the world) have helped him make it this far. I did have a repeat cat scan as i know aneurysms tend to run in families and me being over forty and female it increases my chances of having aneurysms, thank goodness it was normal. I wonder to if there is a connection with cluster migraine headaches and aneurysms???


#4

wow i dont know now that you say that, i had a aneurysm coiled june 1…but my son who is now 25 has suffered terrible with cluster headaches, it is horrible!!! we also have had to so many dr.s and so many tests, now i wonder if they are some how related…if you find out anything please keep me posted, and you said you cant eat splenda??? did your clusters go away?? I just dont know what to do for my son anymore…


#5

still have headaches just about everyday just not so bad. guess i have just learned to live with them as bad as that is, i guess it could be worse. if i eat anything with neutrasweet, just 1 sip of a diet coke will send me into cluster whirlwind. have you tried keeping a food diary? just a suggestion. My husband was so proud of himself as he kept telling me that those darn diet cokes were the cause of all my headaches, hate admitting he was right. Have you had your sons eyes checked? The pressure in my eyes is on the high end of normal and was originally thought to be the reason for my clusters. If glaucoma runs in your family you may want to have this checked.


#6

I didn’t have cluster headaches until after the aneurysm. It is sort of like a reminder to me that I had an aneurysm (that and my right side). My neurologist said that when they closed my skull up from pulling out the aneurysm, they most likely stitched through a couple of nerves and that is causing my cluster headaches because when my blood vessels move, it hits those nerves. There are different reasons to have cluster headaches that may feel like you are having an aneurysm because it is the worse feeling in the world but you are not.


#7

I had a ruptured aneurysm in 2007 and then had the onset of cluster headaches. The best and safest way to tell if you have an aneurysm is have an MRI or CT scan of your brain.


#8

I want to bump this because I still have cluster headaches after the craniotomy (it has been almost 6 years). Please help me out!


#9

I have cluster headaches that affect where they entered for the craniotomy to clip my ruptured brain aneurysm. These headaches usually occur when there is a change in barometric pressure. I am at wits end with my headaches since I live in a zone where the barometric pressure is like a roller coaster. I have had many different treatments over the 6 years since I had the craniotomy. I have tried: Keppra (still on), Verapamil (still on), Imitrex (still on), Zomig, Topomax (bad side effects), Butabatol, Neurotin, Oxygen treatments, Depacote (2000mg treatments work well), and every other migrain/restless leg/seizure/Parkinsons treatments that there are. I usually spend about 10g a year going in and out of Doctors/Hospitals. My next "miracle cure" will be Neupro since it is supposed to alleviate your headaches all day.


#10

Hi Jo...this is me...when I get the bad migraine since surgery...it always happens in the site of annie and coils...back of head/neck and goes all the way over...my Bp meds help and then when I get these bad ones' I take the feriocet...A Neurologist should really be able to help you out...~ Colleen


#11

Thanks Jo! I feel I am lucky to be alive except when my headaches are so severe that I all I can do is just lay and bed and think bad thoughts with a 9 or 10 out of 10 pain. I used to go to an ER and get the Depacote injection but then I would miss so much work but I would feel better (very sleepy but better). I really want to move away from Kentucky because I have visited Arizona and I was a new person. We will be going to Hawaii on our next vacation in September and I may convince my wife to move there!


#12

Hi Jo...the caffeine in the Feriocet most likely is causing the increase in Bp...I think it would do this to me, but I take a blood pressure pill that also is good for bad headaches (propranolol)...

I do notice I can't take many of the Feriocets when I have bad headaches and/or feel a bit nervous...Neurologist would like to try something else with me...but not ready...

Keep us posted on the Neurologist...like every Doctor...I hope you get a good one...lol...

~ Wishing you a good day ~ Colleen


#13

Alex it does seem weather can make a difference...I tend to get bad headaches when big weather changes...ie., Kentucky...I have home in Indianapolis and in Florida...tend to do better in Florida because the change in weather is less drastic...(better in the sense of bad headaches)...keep us posted on how you are doing ~ Colleen


#14

Alex-

Sorry to hear about your pain. I am a ch'er myself. Have you tried ch.com or clusterbusters.com? There is help out there, my friend. Let me know if I can help.


#15

Update: I went to a pain specialist and he gave me a radio frequency shot in my temple and after a few months, my headaches went from horrible every day to minimal every week!


#16

Hi Alex,

Can you give us information on the pain specialist? A link to the site? I know this post is a year old; but if you're still on here, I would appreciate more information. I'm suffering from regular headaches after a rupture and clipping surgery, and I'm ready for them to go away.

Cheers,
Markelle


#17

What kind of calcium blockers are you taking? After 5 years in and out of the pain clinic for severe headaches caused from two aneurysm surgeries, the only thing working for me is 8 Tramadol and up to 10 Neurotins/day, I would love to get off of them.


#18

I’ll jump in here. I too suffer from daily migraines since clipping surgery four years ago (trigeminal autonomic cephalalgias, a type of cluster headache) Tried and failed four different medications and oxygen therapy, acupuncture, and massage therapy before starting Namenda. It has been my savior. It took about five months to slowly start working, and I am very happy to say no migraine in the last six weeks. I have also just finished a round of physical therapy. Some how my craniotomy site and neck are triggers.

I see Dr. Cowan at Stanford in Palo Alto.


#19

Thank you for sharing, I will keep this in mind. I'm about 10 months post clipping/rupture, and these little buggers are taking me DOWN. Just started 3-4 months ago; very sporadic, no rhyme or reason. I'm not overdoing it, or so I think, and they just knock me on my butt!


#20

Interesting discussion. I'm 6 months into recovery and my worst side affect are the constant, daily headaches, heavy head and neck pain. I too think that certain foods set it off. I'm on a low dose Paracetamol/codeine pain killer.