Headaches

Thank you Simon and Jeanmarie for your reply. The last neurologist I saw told me they are not from the annie because there are no nerves there. I have suffered from these headaches since the annie in October 2011. I did have headaches before but these are different. Some days aren't too bad but other days are really bad. I encourage all of us to continue our fight in finding relief from these headaches and also to post what works for them. Maybe some of us can benefit from someone else.

Thanks again to all of you that have replied to my post, it helps us to know we are all in this together.

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Hey Ginger,

Unfortunately we don't have a rating for posts on these groups, because I'd be giving everyone here a big +.

I too have been told the headaches have nothing to do with the multiple surgeries I have had to endure and been given the same excuses as you in that the brain has no pain sensory nerves and it only processes pain messages. Prior to my first op I was asked if I had had headaches, sure I'd had headaches, then they operated... ...ohh hell, I ain't ever endured pain like that before. They then told me it was all because I had a low tolerance to pain. 6months later they discovered it had nothing to do with low tolerances and I was again put under the knife. I've recently had op number 6 and STILL these #$%^$#@ dr's want to blame me for my ongoing pain. Frustrating just is not a strong enough word to express disappointment/anger. Every dr, specialist, surgeon I have seen has given me a different diagnosis and stated that the other medical professionals are wrong. So who is right??

Like you I have days where I can manage, but then I have days where I want to shut myself off to the world. I've been told that if it was a constant pain they 'may' do something about it, but because it's fluctuating they couldn't be sure further surgery would assist. I do not want more surgery, but equally I do not want the level of discomfort I am presently having. Seems that I've run out of options and my friend pain has setup residence, in my skull.

Merl

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Merl ~ thank you for your input. Are your surgeries due to a ruptured Annie? Have they said they may be 'rebound' headaches & suggested you stop taking pain meds for a period of time? I was taking Fioricet & Norco for the pain, in very low doses, (1 Fioicet a day, & usually 1/2 Norco). I did stop taking the meds for a few weeks but it didn't seem to make a difference so I have since started taking them when I need them. The last Neuro thought I might be addicted to them so he suggested I try OTC meds. I have kept them to an absolute minimum & only take them when I can't deal with the pain. Having a headache EVERY day is very wearing on your physical & emotional being. It would be nice/comforting to hear a Dr. tell us that this is what we have to live with after such trauma to our brains. I know we are all very fortunate to have survived, I think it would be easier to deal with the pain if they would just tell us this is the result we have to live with after such an ordeal. My Neurosurgeon told be after my rupture the headaches should subside in 4 - 6 months, then he said it might take a year. Here I am 4 1/2 yrs later & still dealing with them everyday. I wish us all the best in a solution.

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Hey Ginger,

I have a nasty growing in the subarachnoid space, right in the centre of my brain. They can't remove it as it's too close to bits I need. The growth is stopping the natural flow of CSF (cerebral spinal fluid) draining from my skull, so my intracranial pressures fluctuate. Initially they operated and removed a portion of the growth, but this did not affect the retention of CSF. 2nd operation they inserted a VP shunt to drain the fluid. When they placed the catheter into the ventricles the fluid levels were high, the fluid drained and then the tube end was within the grey matter and not actually within the ventricles and would only drain when the pressure raised, so I was going high, low, high, low... The dr's were telling me my continuing pain was due to the meds, so like you I cut back. My wife could see I was in agony and keeps telling me to take the damn meds. I have... ...well let's just say a bit of experience with addiction. This is NOT addiction related. THIS IS PAIN related. But it was made quite clear to me that I'm just the patient, I wouldn't know. They are the dr's, they've been to university, so they know all about it. GGGrrrrrrrr. I'm not taking the meds because I like them. I'm taking them to manage the pain.

In total they have now operated 6 times and each has been to 'fix' things but, as I've said before, if this is fixed then I'm another word beginning with 'F'. I have seen numerous medical professionals and each has their own differing opinion and each discredits the others opinions and nobody can give me a direct answer. It seems the easiest answer is to put it all back on the patient, as if we enjoy all of this, as if we choose to be in agony. Who on earth would choose this??? I have been told my pain was dental related so I had all of my teeth removed, then was told it was my eyes so now have glasses, I was then told it was ear, nose, throat related so went to see and ENT specialist, he says 'all good'. So I've gone through each diagnosis and tried to get the answers. Personally I believe that each operation has had a compounding effect but there is no way I'm going to get a dr to admit to that as they think I want to sue or place blame. In my view if they didn't operate, I'd be dead. I'm not looking for blame I'm looking for answers. It seems all the blame is on me. TSK. I give up.

Merl

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Merl said:

Hey Ginger,

I have a nasty growing in the subarachnoid space, right in the centre of my brain. They can't remove it as it's too close to bits I need. The growth is stopping the natural flow of CSF (cerebral spinal fluid) draining from my skull, so my intracranial pressures fluctuate. Initially they operated and removed a portion of the growth, but this did not affect the retention of CSF. 2nd operation they inserted a VP shunt to drain the fluid. When they placed the catheter into the ventricles the fluid levels were high, the fluid drained and then the tube end was within the grey matter and not actually within the ventricles and would only drain when the pressure raised, so I was going high, low, high, low... The dr's were telling me my continuing pain was due to the meds, so like you I cut back. My wife could see I was in agony and keeps telling me to take the damn meds. I have... ...well let's just say a bit of experience with addiction. This is NOT addiction related. THIS IS PAIN related. But it was made quite clear to me that I'm just the patient, I wouldn't know. They are the dr's, they've been to university, so they know all about it. GGGrrrrrrrr. I'm not taking the meds because I like them. I'm taking them to manage the pain.

In total they have now operated 6 times and each has been to 'fix' things but, as I've said before, if this is fixed then I'm another word beginning with 'F'. I have seen numerous medical professionals and each has their own differing opinion and each discredits the others opinions and nobody can give me a direct answer. It seems the easiest answer is to put it all back on the patient, as if we enjoy all of this, as if we choose to be in agony. Who on earth would choose this??? I have been told my pain was dental related so I had all of my teeth removed, then was told it was my eyes so now have glasses, I was then told it was ear, nose, throat related so went to see and ENT specialist, he says 'all good'. So I've gone through each diagnosis and tried to get the answers. Personally I believe that each operation has had a compounding effect but there is no way I'm going to get a dr to admit to that as they think I want to sue or place blame. In my view if they didn't operate, I'd be dead. I'm not looking for blame I'm looking for answers. It seems all the blame is on me. TSK. I give up.

Merl

Merl - So sorry to hear about all you've been through. Sounds like you've been battling all this for quite awhile. We go through all this & still have no answers or solutions, but still have to endure the pain and the cost of it all. After mine ruptured they told me the pain was due to the blood that was in the cerebral fluid & it would go away in time. How long does this take? Your's sounds different than mine, if they are draining the fluid it would seem to me there isn't enough fluid there which would cause headaches. I can see that by the hi & lows you are having it seems that would cause pain.

My husband sometimes gets frustrated as I'm sure your wife does too. It's hard to see someone you love & care about suffer. My dad had 4 ruptured annies, the last one was a double, he died 2 weeks after that one. Do you have a family history? You'd think that with all the amazing medical advances they could come up with some answers & solutions for us. Or at least admit that the Annie's have something to do with them.

Don't give up, we are here to help each other & lend support.

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Hey Ginger,

ADMIT?!?!? Now there's a wish. None of the dr's I've had the misfortune to see will admit to anything and as for the frustration, well, that's just omnipresent. I know some people get frustrated with me but that is nowhere near as frustrated as I am. Others want to judge? Fine, do so. But come here and deal with my load for a day, just ONE day, then they might get some sort of comprehension of just how difficult this all is. Some people will say " ohh you look awful..." My response is "you want to have a look from this side..." what they can see is minimal compared to my reality. I do try to hide it, but often not very successfully. My eyes give it away. The fact that it feels like my eyes are going to explode from my skull doesn't help. I have at times tried to explain, to express the level of pain I'm suffering but I've given up on that now. The dr's have told me it's all in my head. As if I didn't know that already, but they mean psychologically, as if I enjoy the agony. WTF, ARE YOU %^&$*# CRAZY!!! Or that I just like taking the medication OH BROTHER!!! Are you @#$%& joking??

As for the wife, she is my rock, I swear I'd be long dead if it wasn't for her, her understanding, her empathy and her care are about the only things that keep me going. I will forever be in her debt. She married me for better or for worse and I tell her she certainly got the worse. She thinks I'm joking when I say this, but I am being deadly honest whether she accepts that or not.

Merl

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Hi Ginger

Am so sorry you're suffering headaches, pain is the most miserable monster I've met. My first aneurysm was a berry over my right temple, it burst during sex in May 2004 (my partner at the time wasn't sure if he'd killed me or given me the time of my life, poor bloke). I had surgery to stop the bleed by clipping. After a long recovery I felt lucky that I had survived - my balance has been dodgy since and I need a stick to move around but didn't have headaches regularly, occassional ones which I put down to stress at home & work, easily managed by codeine & paracetamol. I was made aware in 2007 I had more aneurysms, they were monitored and in Feb 2015 it was decided a fusiform aneurysm over my left temple needed surgery. They did it all through my groin, placing coils inside it and a stent over the entrance of it, there was a small area which wasn't able to be filled or covered by the stent, which would require monitoring as it was filling with blood. Since that surgery in 2015 I've suffered extremely sharp pains in my left temple and a feeling of tightness. My neuro surgeon says this is unrelated to the surgery or aneurysm. I find this hard to believe, given the pains are in exactly the place the surgery was done. The pains are happening sometimes when I'm not doing anything stressful or draining, they are there suddenly - sharp, almost needle like intense pains, sometimes only there for a minute or two, but sometimes so bad I have to lay down and dose up on codeine & paracetamol and try to rest till it passes.

I've babbled on a bit there, apologies, it's an emotive subject for me.

I'm not sure what I should do - it seems I'm expected to believe it's not related to my aneurysms and just manage / get used to the pains, and I'm not sure I can do that, it's having a bad effect on my life / work and friendships. Feeling lost and alone is how I'd describe myself right now.

I truly hope you find something to deal with the headaches you're suffering and have supportive people around you to see you through.

Best of luck with it Ginger

Jo (UK)

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Ginger,

In my case, I developed severe vertigo and double vision as a disorder approx 2 months after my hospital discharge. I had ruptured aneurysm in the Cerebellum and was surgically coiled. The neurosurgeon and neurologist could not provide an explanation nor diagnosis. In the next 6 months and after consulting with serveral physicians, I was diagnosed as a Vestibular Migraine, a complex headache even though I did not feel pain. The difficulty with my diagnosis is that there was no peripheral evidence of brain damage from the MRI and CT scan. But, there are other indication of neurological issue by examining the involuntary jerking of my eyes. After being treated at Headache center of Neurology with a regimen of Lamitcal, I was reevaluated by Neuro-Ophthamalogist and diagnosed as Central Vestibulopathy and treated with Neurotin where the Vertigo is now manageable. It took almost 15 months to get the correct diagnosis and treatment.

When I started to get Vertigo, I consulted with my friend who suffers from chronic Migraines who recommended that I keep a daily journal. It was very helpful in getting the diagnosis and treatment for my post issues. After brain trauma like aneurysms, localized evidence may not appear in CT or MRI scans like in my case. As the Neurology Specialists mentioned to me, neural paths often change and become over excited after brain trauma. In my case, the bleed was very close to the brain stem so it makes sense. Neurotin acts to dampen this excitement which can lead to vertigo or headaches.

I would consult with a headache specialist as a starting point. Good luck. I hope that you get the help that you need.

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Jo, you describe everything to a tee the same as me. Keep your chin up, where in the UK are you?
Regards
Simon



jo said:

Hi Ginger

Am so sorry you're suffering headaches, pain is the most miserable monster I've met. My first aneurysm was a berry over my right temple, it burst during sex in May 2004 (my partner at the time wasn't sure if he'd killed me or given me the time of my life, poor bloke). I had surgery to stop the bleed by clipping. After a long recovery I felt lucky that I had survived - my balance has been dodgy since and I need a stick to move around but didn't have headaches regularly, occassional ones which I put down to stress at home & work, easily managed by codeine & paracetamol. I was made aware in 2007 I had more aneurysms, they were monitored and in Feb 2015 it was decided a fusiform aneurysm over my left temple needed surgery. They did it all through my groin, placing coils inside it and a stent over the entrance of it, there was a small area which wasn't able to be filled or covered by the stent, which would require monitoring as it was filling with blood. Since that surgery in 2015 I've suffered extremely sharp pains in my left temple and a feeling of tightness. My neuro surgeon says this is unrelated to the surgery or aneurysm. I find this hard to believe, given the pains are in exactly the place the surgery was done. The pains are happening sometimes when I'm not doing anything stressful or draining, they are there suddenly - sharp, almost needle like intense pains, sometimes only there for a minute or two, but sometimes so bad I have to lay down and dose up on codeine & paracetamol and try to rest till it passes.

I've babbled on a bit there, apologies, it's an emotive subject for me.

I'm not sure what I should do - it seems I'm expected to believe it's not related to my aneurysms and just manage / get used to the pains, and I'm not sure I can do that, it's having a bad effect on my life / work and friendships. Feeling lost and alone is how I'd describe myself right now.

I truly hope you find something to deal with the headaches you're suffering and have supportive people around you to see you through.

Best of luck with it Ginger

Jo (UK)

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Hi Jo, nice to hear from you. So sorry you are dealing with multiple Annie's. So far I've only had 1 & I hope that will be it. Nothing else had been detected. It's frustrating when the specialists tell us the headaches aren't caused by the aneurysms. In your case they are in the exact spot where your problem was. Mine usually start across the top of my head or behind the left eye. Mine was in the circle of willis & I have 9 coils. Like you mine came on during sex. It has changed my life. I did return to work after the rupture but 18 months ago I had to quit due to the daily headaches. I usually have to lay down for an hour or 2 about 4 - 5 days a week. I just do what I feel up to, I don't push myself. Fortunately for me my husband is really understanding & supportive. My kids are grown & on their own so I don't have those concerns.

I sincerely hope you find what works for you & keep monitoring the Annie's.

Best of luck to you.......



jo said:

Hi Ginger

Am so sorry you're suffering headaches, pain is the most miserable monster I've met. My first aneurysm was a berry over my right temple, it burst during sex in May 2004 (my partner at the time wasn't sure if he'd killed me or given me the time of my life, poor bloke). I had surgery to stop the bleed by clipping. After a long recovery I felt lucky that I had survived - my balance has been dodgy since and I need a stick to move around but didn't have headaches regularly, occassional ones which I put down to stress at home & work, easily managed by codeine & paracetamol. I was made aware in 2007 I had more aneurysms, they were monitored and in Feb 2015 it was decided a fusiform aneurysm over my left temple needed surgery. They did it all through my groin, placing coils inside it and a stent over the entrance of it, there was a small area which wasn't able to be filled or covered by the stent, which would require monitoring as it was filling with blood. Since that surgery in 2015 I've suffered extremely sharp pains in my left temple and a feeling of tightness. My neuro surgeon says this is unrelated to the surgery or aneurysm. I find this hard to believe, given the pains are in exactly the place the surgery was done. The pains are happening sometimes when I'm not doing anything stressful or draining, they are there suddenly - sharp, almost needle like intense pains, sometimes only there for a minute or two, but sometimes so bad I have to lay down and dose up on codeine & paracetamol and try to rest till it passes.

I've babbled on a bit there, apologies, it's an emotive subject for me.

I'm not sure what I should do - it seems I'm expected to believe it's not related to my aneurysms and just manage / get used to the pains, and I'm not sure I can do that, it's having a bad effect on my life / work and friendships. Feeling lost and alone is how I'd describe myself right now.

I truly hope you find something to deal with the headaches you're suffering and have supportive people around you to see you through.

Best of luck with it Ginger

Jo (UK)

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Hi,

I suffer from daily all day long debilitating headaches. I had a sah on 11/2/12. I wake up to feeling like I have a hangover everyday. Headaches I guess are normal for us survivors. So far I have not found anything that the dr. has given me to take away my headaches completely. I also get migraines weekly. I also suffer from neck and shoulder pain since my rupture. I have had 1 round of botox shots (for me 32 shots yes I am not kidding 32). I found it did lessen the pain of my headaches, neck, and shoulder pain. However they freaking hurt! I also seem to be having problems getting my second round from my nuero dr. I was suppose to get it last month but they canceled my appointment. I had another apt last week and still no shots. dr.I have another appointment next week. Hopefully they will have them by then. All I can say is find a good nuero. One that actually listens to you and one that does not say you should just be happy you survived. I am so sick of people saying that! Good luck.

VJ

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VJ thanks for your reply. So far I've stayed away from the botox, after reading more about it I was a little afraid to try it. How long did you get relief? Do you think it was worth the pain? I usually take 1/2 a Norco by the end of the day to help with the pain, it doesn't go away completely but it makes it more manageable. I also have neck & shoulder pain from time to time. I wish there was something the Dr's could do to help us deal with the headaches better. Did you have any permanent damage from the Annie? How did they treat it coiling/clipping?

Take care & hang in there.

Ginger

Ginger,

I had coiling. Yes, I have some damage. I forget a lot, cant stay on task at times, no energy, panic attacks, depression, fatigue, and many more. I have a constant headache that rarely and I mean rarely ever goes away. To be honest I think the only time I am headache free is when I go to the er and get morphine and I try to avoid that! I get 32 shots. I have only had 1 round of shots. It did not get rid of my daily headache but lessened the pain from it. Migraines were milder too. I think it worked for about 2 months and then started dropping off in effectiveness. You are suppose to get them every 3 months but I am having difficulties with my Dr. getting it into his office (extremely long story). For me any relief is better than no relief. Oh it also helped A LOT on my shoulders and neck. My neck and shoulder muscles are always tight. I hate needles absolutely hate them and the 32 shots are painful but after that the relief of some of the pain is worth it. Do you remember the pain of childbirth? yes, but you would still go through it. I think of getting my botox shots the same way.

I'm a year and a half out and I still get them as well. If I concentrate or to much commotion. They come and go through out the day.

My coiling was 9 months ago and I have horrible headaches daily too. My doctor says they are from stress. I was stressed before the ruptured aneurysm far more than I am now, and I never had headachesā€¦ so I donā€™t knowā€¦

I don't know about you but I'm pretty tired of all the 'specialists' telling me they are 'stress or tension' headaches. I haven't been this stress & tension-free in years. I have a very supportive husband, my kids are grown & on their own & doing very well. Stress & tension were years ago while working & raising a family. I am curious as to how many of us out there that have heard the same from their Dr's. If you would like to let me know who you are I would love to know.

Thank you all for replying to my topic. I wish us all good luck in our search for some relief.

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I agree Ginger, it seems a common subject throughout this thread. From the other sites I am a member of it is a common thread there too. Head pain is all too often labelled 'stress or tension' related. I believe part of this is the medical fraternity protecting itself "don't be blaming us. It must be YOU" Grrrrr. I'm looking for answers, not blame. In my view if they didn't operate, I'd be dead. I want answers/other ideas on how to manage all this. Is there a better way to manage? Not blame.

Merl

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Yes, I have daily headaches. I was on Oxy, and I it worked great, but I was afraid I would get addicted. They switched me to Fioricet, which is some kind of Caffeine/Tylenol mix with a third ingredient I can't remember (damn brain) and it helps but it's not as good. It makes me kind of sleepy, too. I'm not sure what to do. I'm so tired of feeling crappy all the time. My ruptured aneurysm was 6 months ago. I am suffering from major depression, too. I hate not being able to work, drive, or remember things. I ask my husband the same questions over and over again. Frustrating!

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Leslie - I totally understand your frustration. I too take fioricet along with Norco as needed. I'm 4 1/2 years out & still dealing with the headaches. Are you taking anything for the depression?

I hope you get relief from headaches & I hope you seek treatment for the depression. It would be helpful if the Dr's would at least acknowledge that the headaches are 'real'.

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