Thats right…on my birthday! And I think I’m the one you’re thinking of that posted about generic vs. brand Plavix. 
I’m now convinced that both screw me up and it’ll be nice when I get a clean angio and can go off of it! Fighting a real whopper of a headache tonight, and wouldn’t you know, the barometer had a major change today! Lol (because its better than crying, usually).
We're about to go from 36 degrees up to 70 degrees then back down to 40 degrees within the next few days here in Maryland, so I'm figuring I'm gonna be hammered with one hell of a wallop. Ice on the back of your head will help, at least it does mine, and naps, lots and lots of naps.
Hang in there, Sarah -- try to take it one day at a time which I know is very difficult thing to do. For me, it was like pregnancy. For years we kept trying and trying and nothing happened (well, I was trying and trying, I think my husband was just enjoying...lol). I was beside myself upset with it all and read up on everything, tried everything short of fertility doc and still nothing. Finally learned to let it all go, got a puppy, and was counting blessings. Then out of nowhere, the smell of onions made me hurl and the little stick finally showed me the plus sign. Healing is like that. You don't realize that you're actually getting better until you let it all go and just let your body do what it needs to do. Not that you don't baby yourself through some of it, but you learn to let go of thinking every little thing is something to do with the surgery, or the PED, or your aneurysm, or your brain, or your bloodflow, and when you can let that go, you can relax, and when you can relax, you can heal. Not sure if that makes sense or not and it took me a looooong time to get here, but that's my insight for the day.
So, do book a neurologist -- and tell the office that you're trying to book that you're one month past aneurysm surgery and in great headache pain because most good neurologists have a month to two month waiting list for new patients -- or ask your surgeon's office/or PCP to book you in at a neurologist to try and get you in more quickly. If you're having pain that the neurologist thinks is abnormal beyond what you should be experiencing beyond surgery they will run test such as CTs, CTAs or MRIs, MRAs -- my original neurologist found my aneurysm. And see a chiro if you can -- try to book an SOT if possible -- much lower impact and more holistic approach to the body. I've heard great things about acupuncture as well, but there are none in my area. And just for the hell of it, get your eyes checked thoroughly by an ophthalmologist I've noticed that at least three of us on here were/are experiencing head pain/headaches due to cataracts and/or wrongly prescribed glasses.
Hugs again! =)
Tara
Good, no GREAT advice Tara. Every time I think I'm all better and seeing things more clearly, the next month or week is even better! It's very hard to let go of the scared feelings, however. Good idea about the vision, as well. Mine changed dramatically after the SAH. Now I'm getting PT for the headaches. It seems as though my neck is out of whack. I'm looking forward to relief in that area. Naps are excellent. Just don't let that be a form of escapism. I'm doing more every day. I started playing bridge again and was thrilled that I can still count cards. Yay!
I to suffer right sided headaches. I had my Coiling done Oct. 2011. Before I knew about the Aneurysm I suffered very frequent headaches that would wake me at night. Just by chance, my husband uses Oxygen for Cluster Migraine Headaches and he takes Lyrica. I was so desperate that I tried it and found that it does help. My Neurologist prescribed the Oxygen for me but unfortunately my Insurance denied coverage for Lyrica. The Blood flow to my brain on right side is 99% blocked due to FIBROMUSCULAR DYSPLASIA of the Carotid Artery, so it's a double wammy for me. Ask your Dr. about the Oxygen.
Thanks Tara for all of your insights - I will take them under advisement. ;)
I don't have many usually, but had a brief moment of clarity in the middle of madness. lol I think you have to be mad to teach 6th grade... it's a flatout requirement. Not an order Sarah, sorry if it came off that way. I hate seeing you struggle...I hate seeing any of us in pain, and I hate that the PED is somehow sold to us as a 'fix-all' when it can cause so many debilitating headaches. I wish the surgery had come with a "side effects" sheet like a medication does.
Hello Sarah (And Jo, Colleen, Tara, Tansy, Robin and all other headache suffereres after PED or Coiling procedures)--and my God, theres a lot of you out there--The medical community with their automatic answers of "Not the coil or ped thats causing your headaches"--thats pure malarky as the V.P might say, as you all are aware no doubt. Not that this is gonna fix any of your headaches, but I've written the FDA to let them know of the horrific incidence of headache sufferers out here in the real world due to the medical devices the FDA has okay'd and yeah, we know that they've also saved lives but c'mon . this is one hell of a side effect to have to endure--anyways, thought i'd throw in my two cents, it really is astonishing to me when the medical world says something so contrary to what is so obvious...Peace to you all, Janet
Good for you, Janet! When we are struck with the aneurysm (et al) and the resulting treatments, we assume that the medical professionals will give us the whole picture. In my experience this hasn't been the case. The neurosurgeon passes off to the PCP. The PCP has no clue and is hesitant to tackle any problems because of the aneurysm. I even went to a neurologist with a typed list of concerns. After being "processed" in advance by 3 different people, the neurologist shrugged and said to try massages for the headaches and flat out wouldn't address the other concerns. Will try the PCP tomorrow. I'm running out of ideas, but I believe it shouldn't be this difficult. By and large I don't have any deficits or horrible problems. The few I do have deserve to be respectfully addressed. I hate saying this, buy I've earned some answers here. Is this run around just because I live in a rural area, the result of too few practitioners, fear of litigation by practitioners or what?
Peace and love, Kathy
I too live rurally, and even the doctors/hospitals "in town" weren't even remotely equipped to deal with me. I had to travel to the other side of the state (as is the case with any "major" issues it seems...) to get any real help, and even then, ended up traveling from my state, WA, to AZ to get my first surgery! Nuts if you ask me. I think that if the darn doctors we DO have would just have said UP FRONT (or heck, even NOW) that headaches and PED's or coilings or whathaveyous can have these headaches, for however long, and have a PLAN to try to make it livable in the meantime! *Deep breaths, deep breaths...* Kathy, you have pretty much summed up my whole experience - don't feel like it's just you or your town or your doctors. This is rampant - there's no standards. They treat the problem and forget to treat the patient. So sorry you're having this issue too, but thank goodness we can all come on here and feel like we've been listened to (since our docs don't seem to get that concept). :)
Please let us know if the FDA replies! It is one hell of a side effect, and clearly it is widespread. I just want the docs to acknowledge it, that's all. Just say "yep, it's the aneurysm, and sorry but there's no real fix for this side effect so be prepared to handle it for however long". LOL
I never once took it as "orders", don't fret. :) My neurosurgeon told me AFTER the first surgery that headaches were normal for as much as 6 months or more. And then it turned out I had a leak. And then I got a new surgery, with no headaches afterwards for 24 days and then more headaches again. WHAT'S HAPPENING?? LOL And they say "oh, we don't think there's any problem, go see a neurologist". I'm inventing something new - it's called Scream Therapy. I think it'd be really helpful to climb up a small hill, and then scream at the top of my lungs. Or lock myself in a dark room and scream at nothing at all. Or maybe jump in the car and roll down the window and scream up and down the road. Anyone wanna join me? ;)
Hi Sarah,
I to have frequent headaches. My coiling was a year on Jan 10th of this year. I have a MRA March 7th. Mine is 12months since March 10th, 2012 because I had a TIA from a Vertebrel Artery disection. Which in short is a tear. Normally they would be doing a angiogram but because of the tear...they can't. I'll be glad when I finally feel normal. I will be on 325 asprin the rest of my life. I also am going through genetic testing for MTHFR gene which can cause vascular disease. 40% the population has mutations of this gene. Found out that I can't absorb B12 and not enough folic acid. Now taking supplements and B12 shots. I do feel better, but the headaches are still there.
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Hi all, just to update you on the FDA...according to the FDA, these medical devices that are implanted into our heads (coils, PEDS) are marketed with an understanding between the manufacturers of the devices and the FDA:, requiring all manufacturers to "report" any and all adverse effects or events pertaining to the use of their devices...The medical device companies ofcourse rely on doctors and hospitals to "report" to them about the medical devices that have been planted into our skulls...how often does the doctor or hospitals, etc. report these things...? you can bet, rarely if at all does the real bottom line reach back to the medical device companies let alone to the FDA...(Unless ofcourse their devices are suspect in killing somebody. then the device gets hauled back into the FDA for review).
I'm still waiting for a reply from the FDA, and i'm working on getting the direct company names and addresses of the medical device manufacturers themselves. I feel there is a gap between the medical device manufacturers and the FDA regarding the reporting of adverse events . The FDA is "there" for the manufacturers, but not for the real life recipients of the devices themselves. Also just a note, when reading about the process of getting the devices to market....possible adverse effects of the coil and the PED are: , "possibility of headaches" after their devices are implanted....(thanks medical world for the disclaimer...would be nice if that disclaimer was regularly verbalized to each of us BEFOREHAND (Geez, how hard is it for a doctor to take this 'disclaimer' and apply it to the coil and PED recipients in their care ...its absurd ! ) Anyhow, I'll keep you all posted ...
Peace, Janet
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Wow - interesting info. Keep keeping us apprised!
Hello all,
I've received a response from the FDA/Medical Devices/ and here is what I was told. On the FDA's website, there IS an area where the End Users of all medical devices can report their symptoms . The page is called ' MedWatch Online Voluntary Reporting Form 3500' and comments can be submitted to them via the internet. There is also a phone number they listed for adverse event reporting, and that # is 1-800-FDA-0178. Heres the part that gets dicey: The FDA would like all End USer's (us) to know the manufacture of and the name of the exact device that was used / implanted into our heads...Some of you may know that info, some us don't have a clue. They also listed another site called 'MAUDE DATABASE' which lists medical devices such as coils that have had to be either recalled or re-configured , however I found the MAUDE Database to be rather confusing and tedius to get thru...So far I've found the PED to be thus far the one and only brand of its type being used here in the States (so far..)..as for the coils there seems to be quite a few brands out there being used. Anyhow, thats what I've found out on the whole sha-bang--doesn't help ease the headaches though, thats for sure. Take care all! Janet
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My rupture was 5-5-11 at the age of 30 . I never had issues with headaches until 2 weeks before the boom . Now I have them EVERYDAY . most of them are icepic quick but painful come and go headaches or pain and pressure behind right eye which is where my annie is . My neck hasn't been the same since day of rupture either . Husband thinks I hurt myself while restrained and thrashing around . I also have weird pain throughout my body . not everyday but this week it's been my arms , they've been real achy .sometimes its my back or legs .I don't know . BUT I to suffer from headaches since my rupture which is 90% filled with 9 coils and 1 stent .
Wow! Thanks Janet! Rockin' it out for us!
I had no rupture but have significant neck issues. I had mine checked out through a neurosurgeon who had me have a cervical MRI which showed significant degeneration and spondylosis. My neck was really torqued during the PED implant surgery and I had to have quite a bit of work done by my chiropractor. Do see one if you can, Amanda, especially one practiced in sacro occipital technique (SOT). It's low impact and will get everything working together for you, and eliminate many headaches.
Hang in there!
Tara
Jeez I've got to remember to pop in here more often . Thanks for the advice . I'm going for an X-ray today as a matter of fact .