ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Palace on December 17, 2006, 03:12:05 am
-
Hi
I'm just curious how many people really do attribute neck pain and headaches to the AN. I can open a headache "thread," as Paul (CrazyCat) suggested.
I will get some of my issues/symptoms resolved or the origin in due time. *(hopefully, when I go over things with the Stanford doctors in six month after my next MRI and audiologist testing) Also, next Friday I will ask my first ENT doctor, many new questions.
Since I'm about out of Imitrex now, I could ask this doctor for the injectable Imitrex and my insurance would help pay for that new prescription while, I await out my timing on the pills. I even have the Imitrex spays for emergencies on the road or when I have no water to take the pill. (the spray is only 30 mg where the pill is 100 mg of Imitrex) Oh for those who use the injection........how does that work and how many mg is it available?
Palace
-
::)
I forgot to mention that some of you read that I got a prescription for Valium about one month ago. I haven't taken this pill for more years than I wish to admit. (gives away my age; lol) Anyway, I decided to get this prescription when I was under the stress of symptoms of the AN and nothing else would help me sleep. Much to my surprise, this pill helps the MOST for neck, perhaps the facial and ear pain as well but,.........for sure helps the neck pain. I haven't taken this pill long enough to be sure about helping those symptoms other than a BIG difference on the neck pain for me. (sugh a relief but, I don't want to continue on Valium as a alternative for relief of pain) I would be addicted to Valium, not good! Here I go again back to thinking holistic and wondering if the Valerian root would help the neck pain. Forgive me for thinking, "holistic" again. I just don't want to be on hard perscribed drugs. Any thoughts or ideas on all that?
Palace
-
Well, Valium works to relax muscles, so that's probably why it works for the neck pain. Does Valerian work to relax muscles too, and does it actually work for sleep? Just wondering.
Ciao, Lorenzo
-
Lorenzo,
With my experience using Valerian Root, yes it does relax me and help for sleeping. I think I wlll go take the max dose for that right now. It is 3:00 AM now and I had better get to bed. I have no headache so far tonight but, didn't spend much time laying down. (up on the compute and doing house things) I could start a sleep thread, if you wish! Yes, Valerian root helps with AN symptoms for me but, of course the harder stuff, (Valium) works the best so far.
Regards,
Palace
-
HI Palace,
I see that you're just finished with CK. I had problems sleeping right after CK too, but then things settled ok. At least, that was until recently. The past year (I think, can't even remember when it started) I've been sleeping at a different schedule. Maybe thigns will settle for you though. Sure hope. You need good sleep for your recovery.
Wish you happy and restful Christmas and New Year.
Lorenzo
-
The Imitrex injectable comes with a statdose pen and is 6 g (or 600mg) it is a pretty big dose. However, I get mine in vials instead of the pen, and give myself manual doses of 2g. It works pretty much the same and I can take it more often. I still have the statdose pen in case I get samples of the pre-filled ampules--I use the pen to inject it into an empty vial and then manually inject. This stuff has saved me from going to the ER since I started using it. It is my wonder drug!
Capt Deb
-
Hi all,
I hope this might help someone suffering from neck and headaches. I try to post every so often when the subject of headaches comes up because I know how frustrating finding a treatment that works can be. The treatments seem to be all over the place and there doesn't seem to be any agreement on the best treatment for headache ANers. I guess it is whatever works after a lot of trial and error. Thanks to all of you that post the pros and cons of your headache treatments!
I am receiving Botox injections by a headache neurologist every 3 months for neck stiffness and headaches (specific trigger points). It is a great muscle relaxer. The advantage for me is that it works where I need it and leaves the rest of me alone. It doesn't cause fatique like some of the other meds that I tried. Botox doesn't help with the sharp stabbing pains in the back of my head (Indocin does) but it definitly stops the chain reaction of muscle tightning and dull headaches that the sharp pains seem to trigger. Works well for me.
I take Melatonin to help me sleep. An article from the local health food store said that it had a similar chemical structure as Indocin and was found to help with stabbing type head pain. I think it does help me sleep but I don't think it does anything for my headaches.
Also, I found that bending my head forward when I sleep triggers head pain. I have read a lot of posts where others wake from a sound sleep with headaches too. I found that wearing a soft neck brace at night keeps my neck straight while sleeping. I look like a dork. Another trick is to wear a ThermaCare heatwrap under it. It heats for 8 hours and keeps your neck relaxed.
Deb, Does the Imitrex help with stabbing pains or are your headaches more like a migraines. I would love to replace the Indocin with Imitrex because I am not sure how much longer my stomache can take the Indocin. I'm not sure if it would work for my type of headache though.
JanetÂÂ
-
Janet,
Imitrex cures my stabbing headaches, as well but, let's also ask the "Captain" about her thought on that, too.
Palace
-
The Imitrex helps with what I call "brainwrecks" which mostly occur in the middle of the night, but sometimes after an activity like stretching a canvas. They start out as stabbing pain, but progress into a throbbing, migraine type. These are always preceeded by several days of severe neck pain, for which I take muscle relaxers (Skelaxin) do alot of stetching, and use moist heat. I see the Headache Wizard in a few weeks and will discuss botox with him. Of course, not covered by my insurance, but maybe he can talk to them for me. 4 years of incapacitating headaches and thousands of dollars in doc bills and meds may convince them.
Capt Deb 8)
-
I told the MD here in home town about my stabing headaches, and he said just be patient they will go away when the brain settles..I would like to try imitrex ,is it exspencive. I have insurance.. I wake up with headsches and then go all day . the eveing I get stabing ones. real quick sharp pains in an side and down the neck..They took xray and found calisum on the left side so did CT and it said that I have dejentive disk in spine.. He said , there is your head ache..Jerk
-
I get one more set of Botox injections in February that is part of the headache study I am on. It is free and they pay me for being in the study. I call in a phone report every day and go into the office once a month for a year. I recently asked if I was the only AN patient in the study and they said no. I know that other facilities around the country are participating in the study so you might be able to find one near you. I think finding a doctor that is experienced in giving the injections in the right spots is important. Ther are numerous and very specific spots and doses for injections. (I've seen the charts.) For the first 6 months half get Botox and half get a placebo. The last 6 months everyone gets Botox. It was obvious that I got Botox from the start by how much better I felt. Whew!
At the end of the study I will get a report of the findings. At this point, I have no idea if it is working for others, I just know that after February, I will find a way to continue. My doctor said she will talk to the insurance company. If the study shows a benefit, which includes cost trade-offs and improvement in quality of life, the hope is that insurance companies will cover it for migraines. It has already been approved for other problems and insurance will cover it.
I'll see about the Imitrex when the study is completed. Meanwhile, I'll keep babying my stomache while on the Indocin.
Janet
-
I have to be careful what I take because of stomach problems as well (perforated ulcer in '99) and take nexiumm daily. My headaches are on the top front of my head and are like a constant pain/pressure that just doesn't let up. Sometimes excedrin will relieve it a little and sometimes it goes away on its' own. It probably would go away on its own it's a matter of how long can I stand the pain! I have tried so many meds, it's a wonder they haven't run out by now. Am mostly sick of the side effects and have gained about 10 pounds a year since my AN surgery :-[ . I have tried both melatonin and valerian root and neither seemed to do anything for me. Everyone is different! I haven't noticed any accompanying neck pain but do have very very (can I stress very) tight muscles in my shoulders and neck all the time, regardless of headache or not! I guess I should look into a headache clinic as opposed to the neurologist I have seen but I'm just tired of doctors and tests and everything related! Will post if I learn anything new!
-
I am a first time poster. I wish I would of know about this site before I made my decision to have Gamma Knife done in July of 2006 for a 2 cm AN in my left ear. My doctor never told me that headaches was a side affect of Gamma Knife. My Gamma Knife procedure was a nightmare. I never went back to the ENT doctor that did the procedure. I have been suffering from severe headaches,earaches and neck pain ever since. Before the procedure I rarely ever had headaches. Now I have them ever day. I also have a collection of pain medications that do not work for my head pain but they do a number on your stomach. I had to see a gastrologist who told me to stay off the pain medication because the lining of my stomach is inflamed from the pills. It's very disheartening that all doctors can offer you are pills and no solution to why they are occurring. Sometimes I get the feeling that they think I'm making it up.My new ENT tells me in time they will go away.From reading what posted here that doesn't seem to be the case.That is very frightening me. I just want my life back presurgery. I regret having the surgery done. Now I wish I would of taken a wait and see attitude. I go next week for my first 6 month MRI.
-
I'm sorry to hear that you are having the headaches after your gamma knife. I had microsurgery and I really don't know that much about gamma knife except that wasn't the route I wanted to take. My AN was kind of compressing my brain stem and I just wanted the thing out! There are some other posters on the site who have had gamme knife/radiosurgery and who also may be able to offer you some words of advice. Just do a search, I'm sure you'll find something more encouraging.
-
Just thought i would pop in and say..This is a very interesting thread.
-
I read the 2006 posts that I made on this thread.
I am so grateful that I feel so much better now.
To those of you needing a little encouragement, keep pressing for help and keep hopeful.
Janet
-
Janet...so glad your felling better...What made you fell better?Time or meds or time and meds?Botox?
-
I had Cyberknife 5 months ago and recently I started having ear pain, headaches, fatigue, and a whooshing noise through my ears (among so many other things that were already there). The headaches aren't so terribly severe, but they did keep me up a couple of nights. My doctor gave me some methylprednisolone (a high dose steroid) and then Dexamethasone (a corticosteroid). He actually gave me those because he thought he saw a decline in my facial function. I think the pain and ear noise symptoms struck him as pretty normal. However, it is like a magic drug. It's too bad it has so many potential bad side effects which prevent long term use.
To the person who regrets having the Gamma Knife, I think that surgery also carries many potential side effects. I had two neurosurgeons out of three tell me that radiation was the better option for me (one was very adamant). Both are highly respected surgeons. That is not to say there aren't advantages to both (one respected, but less experienced, neurosurgeon was adamant that I should get surgery). At any rate, I've read on this site that the cure usually seems worse than the disease, except that not treating is dangerous in the long run. For me, the side effects probably started at 3 months, and got really bad at 5 months. I have had some luck with Ibuprofen 400 mg, but it is nothing like these lovely steroids!
If there are any of you out there that have gotten past the headaches, please share! I'd love to hear how long it takes.
Sandra
AN 2.5x2.5x2.7 diagnosed April 2010, treated with Cyberknife August 2010, Dr. Clinton Medbery III
-
Janet...so glad your felling better...What made you fell better?Time or meds or time and meds?Botox?
Janet,
I too am curious after reading this topic what helped you.....BUT I am thinking I've seen your name on some of Mei Mei's posts. Did you have some kind of surgery after this amount of time? Any information may still be helpful how things may have ended up overall since many others are still suffering with much of the similar issues.
Thanks for sharing
-
Yes, Janet posted on my thread. She had two surgeries with Dr. Ducic at Georgetown and he speaks highly about her. My next appt with him is on Tuesday afternoon. I am doing Myofacial release right now and it is difficult to go through. The first two sessions were great and they released so much that I slept right there and 8 hours when I came home, but now the sessions don't give the results as before, they are trying to release the C2 and Occipital nerves from the adhesions. They noted that the part around the Occipital and C2 was resected in order to place the Titanium Mesh. It would be difficult to remove the Mesh at this point because it is grown together with the dura and the brain.
Mei Mei
-
I am now 2 months + Headache Free! What a difference in my life.
My headaches started almost a year after surgery & always accompanied with neck pain/stiffness. Not nearly as bad as some other members on this site, but still dibilitating & frustrating with a toddler running around. I was at the point where I was afraid to do certain physical activity.
I had gotten sucked into a chiropractor because he also offered massage therapy. He also would talk about my C2 getting stuck, adjustments didn't help my headaches. So, I finally broke down to get some prescription meds for my migraines. The doctor also gave me a prescription for physical therapy.
By george, I think it helped! I was given isometric head exercises, ultrasound therapy & a 6x36 foam roller exercises---which I LOVE. I'm still doing massage therapy, but only every other week. Whenever I feel the stiffness coming, I just on my foam roller & stretch it back out. I have not even tried my prescription yet.
I know everyone is different, but perhaps this can help.
I also found a great iphone app: iHeadaches.
It's a great way to keep a headache log. There is a free version & a paid version.
Hopefully I didn't jinx myself in writing this:)
Take care everyone,
Carolyn
-
I agree with you...for these kinds of headaches (and they sound a lot like mine), the drugs don't help as much as the PT. Even the Indomethecin didn't help prevent them but helps me while I'm having a headache. The Imitrex used to rid my headached within ten minutes, but I took it too long and now it's no use to me.
I take Valerian every night along with Melatonin and don't fall asleep. I'm now taking Klonopen for sleep, sleep with a C Pap mask, have a Chiro water filled pillow and ice my neck a half hour before bed.
For me, it's been the Myofacial Release Therapy at Georgetown that has made a real difference in my life. Yesterday I had another session and he worked on my shoulders and neck and came home sleepy. I hope you'll find someone who's been trained in MRT as I am convinced it will help. It's incredible, powerful stuff!
Google it and a website comes up with a page to search for trained certified therapists in your state.
-
It has been ten days since my last treatment (CK). I have a headache and feel nauseate; I take Meclizine 12.5 mg to help with the nausea but try to endure headache. I hear Ibuprofen and steroid would help. Ibuprofen makes the ringing in the ear worsen; don't want to get steroid because of side effects. Any suggestion on the OTC for relief of headaches. >:(
-
My doctor told me to take Alleve because he said it works better. What had lasting results was the PT on my neck (C1 and C2). I posted what the therapist said on my Myofacial release post.
Got a sudden headache at the Symposium Sat. Night after sitting long hours taking notes on my laptop. It must have aggravated the neck to stay in that position too long. This was how I originally ruptured my herniated disks back in 1988 working 8 hours a day as a writer at NIH. Now OSHA has recommendations about how long you should sit at a computer.
Imitrex is very tempting but don't use it for too long or you'll build up a resistance to it.
Mei Mei