I've had this 'on and off' headache for 3 days now. it goes all over my head, it will go from the left to right side, front to back, shooting behind my eye, and then by the nape of my neck... all over the place!!! it's really a pain in the butt! I am also constantly dizzy! it got so bad on Thursday that I went to the ER. They wasted no time at all getting me in, as soon as we got there they admitted me and i saw a doctor immediately. they gave me an IV with morphine and gravol right away, which didn't help, and they got me in for a CT scan within about an hour. The CT scan came back with 'no change' since my GK in May. (at this point already I'm thinking this is NOT normal!!!) After a few hours of more gravol and morphine, still not working, they decide to do a lumbar puncture. That also comes back normal... after a couple more hours they gave me a drug called maxeram. That made me float a little bit, and the headache subsided, but it didn't completely disappear. I was so sick and tired of it all by this point that i said i was fine and wanted to go home. so I have an MRI scheduled for this thursday and a meeting with my neurosurgeon to talk about everything I have been feeling in the past couple months, which includes the 'pins and needles' and 'heaviness' feeling on my left side, dizziness, 'foggy' states, and mild changes in vision in my left eye. i just don't understand why nothing is appearing as abnormal when I KNOW something isn't right!!!! is there any chance my MRI will tell us much more than a CT scan? I'm so frustrated!!! Does anyone have anything similar and have you had any results that gave you ANY answers??? PLEASE HELP! Thank you!
MRIs are generally better at seeing "something" than a CT, especially if it's an MRI with contrast. Be sure to discuss all of your symptoms with the neurosurgeon. Write them down if you think you might forget something. Hopefully they'll be able to get you some answers. Let us know how it goes.
Hello Emily
Last year I was having terrible headaches and should of gone to my Neuro. I ended up collapsing and having a stroke ( not to scare you) luckily I had made it home and did not kill anyone driving. Anyway my husband brought me to emergency and they did 2 CTs and 2 MRI's and all they could see was swelling on the brain. The next day I was transferred to another hospital where they did 2 more CTs and 2 more MRI's which did not show them anything new....I too thought after how could they not see what was going on...but they can not always see...anyway they started to prep me for deep brain surgery and they did a special MRI called MRV which showed the 5 blood clots. So there are special MRI's that your Neuro can order so make sure he does order them. MRI's are better than CTs as Trish states.The nape of your neck is a big sign its something to do with your brain which I learned from my neuro and reg doctor. Are you on any hormones?
Angela
Hi Emily - just a quick question - have your headaches gotten worse since the lumbar puncture? I had one of the worst headaches of my life right before New Years Eve and went to the ER, they did a CT & lumbar puncture to rule out a bleed and both were clear. I then proceeded to have 7 days of a "spinal headache" which was definitely a lot different than my regular headaches (including that terrible headache I had the night I went to the ER). I quickly learned this was one of the side effects of a lumbar puncture. So what you might be experiencing is a spinal headache - check to see if the headache subsides when you lie completely flat on your back. This is how mine was. Flat on my back I was totally fine, but the second I stood up, or even sat up , I was done (like, D-O-N-E!). Hope this helps - I read a lot of scary stuff about lumbar punctures afterwards, but my spinal headaches did subside about 7 days after the procedure and now I'm back to my regular headaches I had before the whole ordeal! Makes me feel lucky for just my regular headaches, haha. I'm on a lot of meds, but check with your physician/neurologist about biofeedback, and/or acupunture. This is something I've been encouraged to do and I'm starting biofeedback on Monday. So, the jury's still out on how that will help, but I figure it's worth a shot! Let me know if you think you have a spinal headache and I can tell you more!! Hope this helps and hope you feel better!! :)
Wait for the MRI results. It's possible that it's edema related, but who knows. Will pray for you.
Thanks everyone! I will be fine for a few hours and then BAM! it comes on strong. Angela - I'm not on any hormones, and I will talk to my surgeon on Thursday and inquire about an MRV. Carrie - I haven't felt any relief from lying on my back. I'm hoping that I will feel better as the days pass. I am just taking it easy and staying in bed alot, which is not easy having 2 little kids! Thank goodness my husband works from home and is able to watch the kids and help out! I'll keep you posted! Thank you everyone for your help! I appreciate any information you have!
Hi Everyone, here is a little update on the past week: Well I ended up going back into the ER on Sunday because the pain was just unbearable. I honestly have never felt that pain in my life. So once again, they got me in immediately and got me on morphine, this time... alot of morphine! So much that it my body didn't like it. My oxygen levels went from 98% to around 70-74% and my heart rate went down to 44bpm... so they gave me some oxygen and helped me stay conscious until the morphine had somewhat worn off. They got me in for a CT and said that they thought I may have had a bleed, so they needed to do another lumbar puncture to be sure. Even tho my husband was hesitant, we agreed. (my husband was certain from the beginning that this was a post lumbar headache). After the puncture they came back saying that it was clear, and there was no bleed! Thank the Lord! So they gave me some caffeine pills because my headache still wasn't going away! This pressure in the back of my head was just driving me INSANE! So they kept me over night and sent me for an MRI to make sure nothing else was going on with the AVM. Again, they said, no change. Ok then... more caffeine pills... still headache is there! So Monday night we had some anesthesiologists come and talk to us about a blood patch. All I could think of was that I had felt like a human dart board and I REALLY didn't want another needle jabbed into my spine. But I would do anything to get rid of this headache. So here we go! They came back a few hours later and it was instant relief! Instant relief for about 8 hours! So as thankful as i am that I had that relief for about 8 hours... I have had this pressure at the back of my head for about a week and half. I believe it is from the Lumbar punctures and that it will go away. It's just such a pain in the butt that you get a worse headache when you leave, after you go in the first time!
We also went to see my neurosurgeon on Thursday and he did say that there is edema around my AVM so my original migraines could be related to that, but there is nothing that they can do for me, other than put me on Topamax and hope that helps. as a last resort, put me on steroids (but i really don't want that). so that was kind of frustrating hearing that from the surgeon. no pain killers, nothing. is it just me, or does that seem stupid? Tylenol for migraines really doesn't help me anymore!!?
Anyways, I sound like a whiny baby!!! lol! thanks for letting me vent! i feel better now! haha
Hello Emily
I am so sorry you are going through all this pain and your neuro is not much help. I can not believe that they did not give you anything for pain. Go to you reg doctor and get some pain meds. Topomax for me put me to sleep which may be good for you short term. Where is your AVM in your brain? My doctor put me on Maxalt alt for migraines and they do work takes about an hour to kick in and then I go to bed and sleep great. I have also just been put on tramadol but only taking half a pill and its cutting the pain a bit and not making me vomit so far. Tonight I am going to try a whole pill. Anyway if your head continues to hurt demand a MRI/MRV it could be a blood clot in your brain and the only way they can see it is with the MRV
I hope you feel better soon and I will pray for you
Angela
Hey Everyone! Here I am a month later, my doctor put me on Topomax and Gabapentin, and while I was on those, i was bed ridden. I couldn't get up because the back of my head was just feeling so full and there was so much pressure! Also the nausea and dizziness was unbearable! I was on those for about 2 weeks and had to get off them! After a week of being off of the medication, going to the chiropractor, and taking a supplement called Reliv, i had some really good days. the pain was totally manageable! and here i am, lying in bed again, i can't get up because the pain is just so much when i sit up or stand. It is painful lying down, but not nearly as much as when I'm up. I'm so frustrated because i thought things were getting better, and now BOOM I'm back down and out. I called the nurse today and she is going to talk to the neurosurgeon about the edema and ask if that is what is causing my persistent headache. If so, then we need to discuss going on steroids. I really do not want to, simply because I had every single side effect of the gabapentin and the topomax, so i can only imagine what a steroid would do to me. for those that have been on steroids, how different was your quality of life after? I have no idea what to do. I have 2 kids aged 5 and 3, so I'm not much of a mom right now, but thankfully my husband works from home and he has stepped up and takes care of them most days along with some great help from my parents and in-laws. I'm almost 10 months post GK, how long will this pain last? and how certain can we be that it is from edema? it did show up on my MRI, but the neurosurgeon didn't make an issue of it at all when I saw him last. Am I just being a baby about this, or is this as painful as I am feeling? Thanks for your help!
Check out occipital neuralgia pain and also cluster headaches. I have the neuralgia and its common to have the dizziness with headache and shooting pain from the base of the head and upper neck. the pain is usually one sides and it can be behind the eyes. I rushed to the er and had tests and they found nothing on the scans. Try and stay calm. If it was a stroke symptom I'm sure the er would have found that right away. It could just be nerve damage. sometimes when swelling or your neck muscles push on your nerves funny things can happen. I've also tried the gabapentin and that helped me but it didnt mix well with my anxiety meds. The steriods will bloat you up like a balloon and could give you an acne like rash(I got both) but it wasnt so bad.
Hello Emily
I have what Nbuddle mentioned after my angiogram and embolism occipital neuralgia pain - after six weeks and not being able to take the pain meds my pain neuro gave me nerve blocks (steroids) in both sides of my head. It has helped so I can function most days. but its wearing off. I had no side effects from it. I know topomax is so strong I could not take it either, I had to build up on Gabapentin so now it does not wipe me out.
Also some people can take Lyrica. I myself can not but my sister takes it for other body pain and it helps her.
You should ask about a nerve block also botox. Botox lasts longer I am told I am awaiting approval from my insurance. Also did you have an MRV? Can you see a pain Neuro?
Angela