Brain Aneurysm Support Community

Headaches

#1

I would like to know how many of my fellow survivors suffer from daily headaches and what your Dr. has told you. I recently saw a new Neuro who has told me my headaches are not from my ruptured annie but 'tension headaches'. I am 4 1/2 yrs post annie with 9 coils and have lived with a headache every day since the rupture. All follow-up angiograms have shown no new problems.

Please let me know....

Thank You,

Ginger Enge

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#2

Ginger, headaches are a common phenomena for those of us who have ruptured and for those who had the aneurysm dealt with before the little bigger blew. My first Neurologist said ruptured aneurysms don’t cause headaches. His office was bright, shiny and loud, I couldn’t think and had difficulty speaking and you got it - a splitting headache. I went to another neurologist in town. He put me on Magnesium Oxide, then after several visits sent me to our local hospital. I met an anesthesiologist who performed an SPG block through the nasal canal with a needle and shot lidocaine. For me, it has been successful as I don’t have debilitating headaches on a daily basis…

#3

Thank you for letting me know what has helped you. I had to change Neuro's this year due to insurance so this is the 4th one I've seen since my rupture.

Thanks again...

#4

I’m sorry for you Ms Ginger. Hope you find relief.

#5

I hope others will post about headaches, because mine are monstrous morning wake up ones. Yesterday I had one that lasted all day, plus I threw up every med I took. I just read that drinking a cup of caffeinated coffee at bedtime will prevent them, hmmmm, I will try this, but it sounds more like a recipe for insomnia than a headache cure.

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#6

Hi Ginger,

I am 8 months post Clipping of my aneurysm and yes, I suffer with daily headaches. Some manageable with meds others just won't go away. I generally wake up with a 'Hangover' type head. I can also at times feel a little sick but not to the point of vomiting. I take daily medication usually 3 times a day... Paracetomol/Codeine tablets. I have been trying to cut back on the codeine tablets to avoid the 'rebound' affect and take straight paracetemol but I'm not sure this is helping mu headaches. My headaches have seem to become worse over the last month. I had a CT at 4 months to check if everything was okay and it was. Everything I read and am told is that headaches are common!

I also suffer from neck pain... it doesnt feel muscular but vascular...if that's a good way to put it. This neck pain and add to my headache or bring it on. It can go away as quick as it came. When I have my headaches, I have a great awareness of where I was operated on...my head gets itchy and the numbness returns.

I had a Neuro Checkup at 3 months with specialist team but don't have another until November 2016. I think I need a check up with them sooner to discuss headaches. I live in Australia, so our system might be different regarding checkups. I see my local GP usually every month for work requirements.

For you, 4 1/2 years is a long time to deal with headaches! I hope you find some relief.

I tend to find that diet can be a trigger! Both good and bad. My head feels better, for some reason when I eat. This i need to discuss with specialist.

All the best.

Gerard

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#7

I find eating can help with my constant headaches. Hard to be eating all the time though!

Magnesium has also been suggested.

Gerard

Campanile said:

I hope others will post about headaches, because mine are monstrous morning wake up ones. Yesterday I had one that lasted all day, plus I threw up every med I took. I just read that drinking a cup of caffeinated coffee at bedtime will prevent them, hmmmm, I will try this, but it sounds more like a recipe for insomnia than a headache cure.
#8

Hi Ginger,

I had chronic daily headaches for the first year following my ruptured aneurysm, I started taking 75mg of Butterbur twice a day and they stopped. I still get headaches on occassion, maybe 2-3 times a month, usually with sudden, severe weather changes or if I am excessively tired. If you try it, be sure they are free of pyrrolizidine alkaloids.

#9

Thank you RaGena for mentioning the weather changes as a headache factor. I sometimes think I am a human barometer.



RaGena said:

Hi Ginger,

I had chronic daily headaches for the first year following my ruptured aneurysm, I started taking 75mg of Butterbur twice a day and they stopped. I still get headaches on occassion, maybe 2-3 times a month, usually with sudden, severe weather changes or if I am excessively tired. If you try it, be sure they are free of pyrrolizidine alkaloids.

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#10

Ginger

I have had headaches since my surgery 4 years ago, some that would even wake me up from a deep sleep. If a neuro says headaches are not due to someone screwing around in your brain, they are an idiot. They should try getting a craniotomy and see how it changes them. My neurosurgeon is brilliant when it comes to brain surgery (many neurosurgeons will not do long term follow-up care related to any side effects and treatment of those). He said that he could not treat headaches, he said as far as he was concerned I was now "perfect". Of course before he made that assessment he had me get an angiogram to make sure there was nothing going on in there. He did talk me into getting a neurologist for long term care. It took me a year to finally realize he was right. My neurologist specializes in headaches and is fantastic. I am on a "cocktail" of meds. I started with Topamax/Inderal/Nortriptyline. They worked and I had significantly less headaches. I didn't like the Topamax (it destroys your nails - with all we go through we have to be vain about something) so she switched that with Gabapentin and I barely get a headache now. She has given me other meds to take depending on the situation, I barely take those. There is one that is a preventive (it is called Acetazolamide). She said I should take that 30 minutes before exercising because sometimes I get unbalanced when exercising and it causes the most horrible headaches. If I get a headache, depending on how bad it is, I take an Aleve or a Fioricet. I do not have a script for any heavy narcotic.

Feel better Ginger.

Carol

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#11

Carol,

Regarding the gabapentin, do you find it gives you brain fog? I stopped taking it for about a month prior to my surgery and I noticed that I could think faster and clearer, but I also did start having the horrible migraines not too long after I ceased taking it. Now I am wondering if the neurotin was somehow suppressing the headaches. I guess I need to see a neurologist.

#12

Campanile

I have not noticed any change in my memory since starting to take it. But, I have memory issues to begin with, so nothing seems to be worse than it was before. I take 300 mg a day in the evening before going to bed. Not sure if that has something to do with it. I strongly advocate having a long term neurologist - and keep looking until you find one you like. When I moved to Tampa I had appointments with 3 different neurologists - I joked I was "interviewing neurologists". I picked the one that was good for me and what my problems were and what I needed. I still have my neurosurgeon for my annual exams, but I see my neurologist every 4 months.

Carol

Campanile said:

Carol,

Regarding the gabapentin, do you find it gives you brain fog? I stopped taking it for about a month prior to my surgery and I noticed that I could think faster and clearer, but I also did start having the horrible migraines not too long after I ceased taking it. Now I am wondering if the neurotin was somehow suppressing the headaches. I guess I need to see a neurologist.
#13

Thank you all so much for your replies, it really helps knowing I'm not the only one dealing with these. I wish all of us could find what works for them. The last neuro I saw said there are no nerves where the rupture occurred therefore that's not what is causing the headaches. As I stated before he is calling them 'tension' headaches. There are times they wake me up in the middle of the night, how can I be stressed/tense when I'm sleeping? A lot of times I wake up with them, sometimes just getting up and moving around helps, and eating also helps. I still follow-up with my neurosurgeon for angio's.

Thank you all so much, I look forward to hearing from others who are dealing with these.

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#14


What you described sounds exactly like my headaches.

I will try suggesting some of the meds to my GP.

All the best.

Gerard


Ginger Enge said:

Thank you all so much for your replies, it really helps knowing I'm not the only one dealing with these. I wish all of us could find what works for them. The last neuro I saw said there are no nerves where the rupture occurred therefore that's not what is causing the headaches. As I stated before he is calling them 'tension' headaches. There are times they wake me up in the middle of the night, how can I be stressed/tense when I'm sleeping? A lot of times I wake up with them, sometimes just getting up and moving around helps, and eating also helps. I still follow-up with my neurosurgeon for angio's.

Thank you all so much, I look forward to hearing from others who are dealing with these.

#15

Hey Ginger,

I too get chronic severe daily headaches. I've recently (5wks ago) had op no.6. Each operation has been to 'fix' things, but if this is fixed then I'm another word starting with 'F'. I have seen numerous specialists and been told the cause is everything from a problem with my eyes to no problem at all and that it's all in my head, as if I didn't know that already. But they were meaning psychological and not physical. I've prescribed all sorts of meds from heart meds to the obvious psych meds, including botox without any success. So now I'm told it's all tension headaches also listed as CTTH or Chronic Tension Type Headaches. Ahhhhh. No wonder I have tension having to deal with %^&*$ DR"S!!!!!

I am very frustrated, disappointed and annoyed. OK, so Im only 5wks from my last surgery, but this has been going on for years. Dr's blaming everything possible, just so long as its not them at fault. Each surgery has sucked more life outta me and I'm just so exhausted. So for me it seems I'm on a diet of painkillers. None of the scans show anything wrong, so there is nothing wrong. I disagree. But then I wouldn't know. I'm just the patient (who has no Patience).

Merl

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#16

Why is it that all doctors, regardless of their area of specialty, will not admit that "Yes, you are now getting headaches because of your brain surgery." Is that so hard to say? We are not even asking you to fix it, just admit it as a fact of life after brain surgery. It is infuriating that they will never admit this, as if they went through the surgery and know this for a fact. Here, give me the scalpel and let's see if you get headaches after I cut your head open and put a bunch of foreign objects in there.

I feel so much better now :)

Carol

Merl said:

Hey Ginger,

I too get chronic severe daily headaches. I've recently (5wks ago) had op no.6. Each operation has been to 'fix' things, but if this is fixed then I'm another word starting with 'F'. I have seen numerous specialists and been told the cause is everything from a problem with my eyes to no problem at all and that it's all in my head, as if I didn't know that already. But they were meaning psychological and not physical. I've prescribed all sorts of meds from heart meds to the obvious psych meds, including botox without any success. So now I'm told it's all tension headaches also listed as CTTH or Chronic Tension Type Headaches. Ahhhhh. No wonder I have tension having to deal with %^&*$ DR"S!!!!!

I am very frustrated, disappointed and annoyed. OK, so Im only 5wks from my last surgery, but this has been going on for years. Dr's blaming everything possible, just so long as its not them at fault. Each surgery has sucked more life outta me and I'm just so exhausted. So for me it seems I'm on a diet of painkillers. None of the scans show anything wrong, so there is nothing wrong. I disagree. But then I wouldn't know. I'm just the patient (who has no Patience).

Merl

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#17

Again, I want to THANK YOU for responding to my questions and sharing your experiences with me. I am so sorry we are all dealing with this pain in whatever capacity we are each suffering with. It's nice to hear from others and knowing what their personal experience is. I encourage all of us to continue to share what they are feeling, it's reassuring for the rest of us, especially when the so called 'specialists' tell us it can't be from the Annie's. I agree with all of you, let's put them through this ordeal and see if they too have headaches after. It might change their outlook.

Thanks again for all the feedback, please continue to stay in touch.....

Ginger

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#18

I suffer daily with headaches and balance since I had my unruptured Annie coiled(5) it was 2012 and I still suffer daily. I just had my first round of Botox for the headaches but so far no relief.

#19

Hi Ginger, sorry to be blunt about this but your brain has suffered from pressure that will have caused some sort of change thus causing headaches, my neurosurgeon suggested this to me and for all the neurologist and their skills they see very few of us! As there are very few of us, they are used to seeing migraine sufferers etc. I have little confidence in someone’s opinion when they say that the headaches are not due to the Sah. How come I didn’t have them before then?
Best wishes
Simon

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#20

I’m so happy that I’m not the only one I was beginning to think I was crazy!!! I suffer headaches so bad I can’t function. Along with some memory loss and balance issues.i guess we all have to look at this like thank god we are all here to talk to each other and support each other thru this because our Drs seem to think that the headaches are not from our Annie’s sorry if it sounds like I’m venting I’m just frustrated.im so sorry we are all in this boat.hopefully soon they will come up with a cure for these horrible headaches,hugs to everyone.

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