I am looking for pain management advice, medications, thoughts, etc. I have the worst headaches now after my PED and coils were done March 1st (that's over a month ago now). They are searing, throbbing, stabbing, as well as dull and achey. They used to be mostly on the left side (as the diagnostic one was), but they are now all over. My surgeon said to stick with the ibuprofen - I find that it only barely cuts the pain. I cannot take Hydrocodone or Oxycodone (Percocet) as they make me nauseaus and don't work (in that order). Everyday is different, but I am really struggling more and more it seems. Bending forward adds to the throbs, as does changing from sitting to standing and vice versa. Sometimes I can distract myself by playing a game on the smartphone or being on the computer. I also wake up a lot of times either in the early morning or at normal wake up time with a seriously painful headache on my left side (where the aneurysm is/was). I'm just at a loss anymore as to what to do with myself and my pain...
Hi Sarah! How are you feeling, any improvement?
What you're describing sounds a lot like what I went through, just about a month after having two PEDs placed in my right carotid artery for a large fusiform cavernous sinus aneurysm in August of 2011. I actually ended up in the ER just about a month after surgery because of the pain, and because I feared something was wrong with my artery/stent. They put me on major pain killers (dilaudid) and did a CT scan. It turned out that my stent/artery were both sound and looked really good, and my aneurysm had actually shrunk dramatically in just under a month. My neurosurgeon said that some of the pain could have been cause by residual inflammation and they sent me home that evening with a prescription for pain killers and a round of steroids to help with the inflammation.
I hate taking pain killers and actually never had in my life until my aneurysm situation. After returning home I ended up only taking the dilaudid twice. As soon as I started taking the steroid I noticed improvement. At my 6 week check up with my neurosurgeon I was still struggling with headaches so he referred me to a neurologist that specializes in headache management. He also told me that many people who have been treated for aneurysms end up dealing with headaches/migraines off and on for the rest of their life, it's a matter of finding what works for each patient to manage these headaches.
So off I went to the neurologist. The neurologist I've been working with is great! She's very friendly and takes the time to listen and explain. She started me on a very low dose of Topamax (an anti-epileptic drug that is also used for migraine management), and told me to start taking Melatonin every night at bedtime. At the time I was have terrible stabbing headaches and Melatonin is supposed to help with this kind of headache. She also stressed that I needed daily exercise and exposure to sunshine. After three days on Topamax and Melatonin I noticed a definite improvement! I felt better than I had in weeks. After a few weeks I started having new visual symptoms and was worried that it was caused by the Topamax so I stopped taking it and they switched me to Gabapentin. Last month I saw a neuro-opthamologist and found out that I have a "visual phenomenon" called visual snow. So the eye symptoms were not caused by Topamax. I've been on Gabapentin for about 3 and half months now, it really helps and my headaches are less frequent and less severe. It still hasn't worked as well as the Topamax did though, so I will probably start taking that again now that I know it wasn't what caused my vision symptoms. I never had severe headaches or migraines until about a year leading up to my aneurysm diagnosis. I'm still dealing with headaches, but I feel much better than I did a few months ago and my neurologist is very hopeful that over time the headaches will calm down to the point where I won't have to take daily medications. I'm really hoping for this outcome!
I didn't expect to write such a lengthy response, but I thought it might help if I shared my experience so you'd know that there's hope and ways to deal with/manage headaches if you continue to have them. Everyone is different of course, what works for one person may not work for the next. Don't be afraid to ask your doctor for help or a referral to a neurologist/headache clinic if you continue to feel this way and find it unbearable and disruptive to life.
Hope you're feeling better!
-Jess
Jess, is your visual snow due to the stent or is it considered to be unrelated? Headaches are what I fear the most about having PED. Though I have read about many who have had little or no problems.
Stephanie,
As far as I know the visual snow is unrelated. The neuro-opthamologist said he sees maybe 4 or 5 people each year with the same symptoms and complaints and he called it an unknown visual phenomenon, possibly caused by irritation to the retina. It's unknown what causes it and very little research has been done regarding it. I started seeing this about three months after my PED placement, but it's very likely it's just a coincidence. My eyes are perfectly healthy. For some reason I see a clear layer of fuzz, like static on a tv, over my vision. It's more annoying than anything.
I was nervous before getting the PED too, but so far have no regrets and feel confidant in the decision I made. Some people are more susceptible to headaches. I was having headaches before the stents were placed, that's how my aneurysm was found. The rest of the treatment options presented to me involved much larger risks and side effects.
I wish you all the best in the treatment of your aneurysm. I wish I would've known about this site before I was treated. It's nice to be able to connect with others and know you're not alone!
Thank you to all who responded - yesterday and today were virtually headache free! Even my "good" days up until now weren't like this, so it feels like a miracle has occurred! I'll keep you posted - thanks!
Excellent Sarah!!
I was just thinking about the coincidence of headaches and I remembered something my dr told me. When he told me about having the PED I voiced my concern over increase in headaches. He told me they would get worse for a while and that, for some unknown reason, when the aneurysm thrombosis', people go through a period some of the worse headaches they've ever had. Then they go away and life gets better. I hope this is what's going with many of my new found friends here:)
A little more twingy today, but still completely tolerable. Praying they're really gone though! Thanks Stephanie for your insight - too bad the doc never mentioned this!
Hello Jess,
I had a Pipeline procedure in my left Internal carotid artery 5 and a half months ago. For 3 months I had no headaches but then all of a sudden I started all kinds of headaches. I tried different types of medications which seem to be helping initially but then headaches seem to come back. My headaches are never gone but they seem to decrease in severity some days.
I tried few courses of steroids which are the only medications that seem to help.
I went to see the headache specialist. He put me on topamax, melatonin, desipramine. They seemed to help initially but headaches are back. I wake up frequently because of headaches.
I feel disabled.
I want to ask you how do you feel after so many months? Do headaches get better with time
Hello Sarah,
How are your headaches now
I am facing the same problem
I am 5 and a half months after my PED. I have headaches almost everyday.
I have tried everything
Do these headaches get better with time??
Will appreciate your reply
It's now almost 2 years since my first surgery, and just about a year from my second surgery, and I can say that the headaches DO get better. I still feel mine were due to a small leak in my annie, which is why I had the second surgery to add more PED pipeline pieces and close off the annie better. I still get headaches, but maybe one or two a week at most. They are usually not nearly as intense either. The only meds I have ever taken are two Tylenol with three ibuprofen - and I kept up on them every 4 hours if I knew I was having a lengthy headache or I knew I needed to keep it away because I had something important to do. I can't take anything stronger because it causes nausea for me (I'm sensitive to narcotics). It does get frustrating but you have to remember it's your brain, it takes a lot of time, and it's different for each person. We all have different levels of pain tolerance too. I simply learned what I can and cannot do when I get a headache and had to adjust my life accordingly. There wasn't really rhyme or reason to why a headache would come on, or why it would cease, but there was reason to what to do when I had one - sit still, don't move, be in a reclined position (no laying down), and keep my mind fully occupied with a book or a game on the iPhone/iPad or a movie on TV. Keep up with the meds, eat and drink good things, and go to sleep as soon as the headache subsided enough to allow it. I think maybe they mean it's time to slow down, I've done too much and need a rest. Who knows. I hope you find a way to deal with them that works for you, and in the end, know that it's most likely just still the healing process and someday you will be better (but remember, this is a new normal, and may never be your old normal).
Thank you Sarah for your reply. My life has completely changed after this procedure.
I get headaches everyday. I am on 3 prophylactic medications. I hope that it gets better with time. It is so encouraging to talk to the people who have been through the same journey.
At least they can understand your pain. I have 2 little kids and I work full time. My job is stressful. That makes it even tougher.
I am having my 6 month angiogram in 6 months and pray that this journey ends soon for all of us
You're welcome - yes, being on this site is most helpful because we've all had the same sort of issues and can relate easily to each other. Everyone's lives have changed to some degree or other with their annies, it's just the nature of the beast, but it sure beats dying! I have 3 little kids myself, but I stay at home with them while my husband works, and it's still a major undertaking some days! Be aware, but not afraid, of your first follow up angio. It could be stellar news, or it could just be good progress. Don't be discouraged if it isn't "you're cured!", or even worse if they DO say that but you don't FEEL that way. This really is a journey, and journeys take time!! It's hard, but it's doable. One day at a time, one success at a time, and after all that time, it'll be better. Rest as much as humanly possible, and let the rest go - the messy house will still be there later. Don't volunteer for a bunch of stuff that isn't necessary. Accept help if you are offered it, and don't feel guilty for it. You are still trying to heal, and if you had to go back to work right away you probably didn't get enough down time to get a head start on the healing. And even then, the healing just takes a LONG time. Keep finding ways to heal, to scale back your life so you can get better and enjoy life again. That's what it'll take, along with time. See a theme? ;) Hang in there and keep in touch!
Well said Sarah girl! Would you like to join Giovanni and I and help administer the Group? I’m not around nearly as much as I’d like to be and you do have a way with everyone. Think about it and let me know.
I am absolutely flattered, but at the same time I have no idea what that would mean... :) I too am not around all that much - I wait until there's at least a half-dozen email notifications before I come in and check on everyone. LOL What would I have to do? I just don't want to agree to something and then be absent too much and not fulfill my appointed duties. ;)
Hi Sarah. I’m going to send you an email on this!
Stepanie I believe your doctor is right! When I haf my PED , my headaches were relieved by Tylenol and resting my head as much as I could. Different story when my second aneurysm was coiled! Horrible headaches that got worse after a month from surgery, but now all of sudden I am being headache-free and beginning to feel normal again! Sarah my prayers that you begin to be headache free give it time.
Had my 6 month angiogram today
Aneurysm is completely gone and artery looks normal
Neurosurgeon wants me off of plavix
He has no answer for my headaches though
Wants me to see the neurologist again.
Sarah had my 6 month angio
Aneurysm is completely occluded
My neuro took me off of plavix
Now waiting for these headaches to get better
How have you beeb?