ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Syl on January 29, 2009, 03:33:21 pm
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I went to a neurologist to help me with my headaches and to get me off Tylenol. Don't let the fact that it's an OTC drug fool you. I keep hearing, "You are killing your liver! Today, the neurologist said it's bad for the kidneys, too. So I'm watching what my siblings drink in case I need a chunk of their liver one day soon. Glad I come from a big family.
Another thing about Tylenol is that the body gets used to it and you end up with headaches from lack of the drug. So you end up with two types of headaches.
Looks like I need a rx medication in order to get off the OTC stuff. He rx'd Nortiptyline (aka Pamelor). Pharmacist said it had been used as an anti-depressant, but not anymore. Side-effects are drowsiness and dry mouth. Will begin using it tonight. As it kicks in I can begin to weam myself off the Tylenol. Wish me luck.
Syl
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Good Luck Syl !!
If the Nortiptyline doesn't work there are other meds out there. I wish I could wiggle my nose and your headaches would be gone. From one headache suffer to another I really do feel your pain.
Good Luck again my friend,
Anne Marie
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Thanks Ane Marie
I was reading all the info that comes with the rx. Soooo many possible side effects. One of them is dizziness. Great!!! Isn't that one of the symptoms that made me go to the Dr. back in 2007? Well, I won't stress about that. It is temporary and the neurologist says he's been very successful in treating headaches with Pamelor.
Syl
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Good luck. You know if it doesn't work, I'm a firm believer and user of acupuncture. I know, I know...werid, hocus pocus,new age....I felt the same. All I know is it works for my osteoarthritis (I'm off celebrex and don't do any more physical therapy exercises now) and degenerative disc disease in my neck. I only go once every 8-9 weeks now and hopefully am building up to go less than that.
It also works to calm the AN nerve and after I have it done I can hear in noisy restaurants, malls, hear the TV and radio, etc. I'm going to start going every week for that for a month, then keep spacing it out as I see fit.
Tisha
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Syl,
I know Captn Deb swears of Neurontin and Topomax. She had middle fossa on her AN and now has cluster headaches. She has noted in other threads here about Neurontin and Topomax and how it works for her... just a thought.
Regardless of what works for you... I hope you feel better soon! :)
Phyl
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Syl,
Audio transcripts of both of the headache workshops from the last ANA symposiums are available for 10 bucks a pop and are totally worth it. Being your own advocate and demanding specific prescriptions from your docs may seem a bit pushy, but that is how I finally got the right dose of Topamax that worked for me (the first doc started me on too strong a dose and I had bad side effects--I learned at the workshop how to take it) Most docs have never even treated anyone with post AN surgery headache syndrome!!!! It would be worth it to let your doc hear the workshop transcript if he or she is open to it. I suffer to this day from stomach problems relate to over use of NSAIDS and had rebound headaches for 3 years and a borderline narcotic dependencey issue. I am so glad you are getting help for your headaches at this stage of the game. I'm afraid I played "stump your neurologist" for about 3 years before I finally got to a headache specialist at a headache clinic who really got the ball rolling on the Neurontin and 6 months fter that i went to the symposium and the workshop and got the info on Topamax.
Hugs and best of luck and Death to the Headache Monster!!!
Capt Deb 8)
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Tisha, Phyl, Captain Deb:
Thanks for the suggestions and well wishes. I will certainly keep all of them in mind.
This Palmelor stuff makes me feel relaxed, but not sleepy enough that it prevents me from driving or getting on with my daily activities. Well, except my daily walk. That takes more energy than everything else. I feel relaxed and relieved from any stress I might have and kind of lazy.
I made it ok at work yesterday. I didn't get the usual brain freeze that turns into a headache if I don't take my Tylenol in the middle of my shift. I did, however, have a new feeling--a kind of pressure at the top of my head which didn't turn into a headache. When I get home at night (11ish pm) I usually apply heat to my neck and take another 1000mg of Tylenol. Well, the heat alone took care of the brain freeze I get before going to bed. I took my Pamelor and went to sleep.
I didn't rest well during the night. I got that darned brain freeze in the wee hrs of the night, but it didn't turn into a headache until morning. Which is when I took 500mg of Tylenol instead of my usual 1000mg I have for breakfast. I added a little heat to the neck and that took care of the headach--but it was a nasty one.
So far so good.
Syl
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Reducing the mgs of Tylenol so soon was a huge mistake. Several days in a row, I've had some nasty headaches--the kind that make me sweat and cry. I uped the dose of Tylenol and this morning I did not get a headache though I did wake up with the usual discomfort. Well tomorrow I start a higher dose of it since I wasn't able to successfully reduce my Tylenol intake. We'll see how the next week goes.
And oh yeah, I have to go look for my mattress warranty info. The mattress is sagging in the middle and is, no doubt, a contributor to these headaches. Even before my surgery, I was waking up with a sore neck.
Syl
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I sure wish your doc would consider putting you on gabapentin (Neurontin) if your headaches are that bad. But right now he is probably focused on which ones are caused by your post-op symptoms and which ones are actually rebound headaches.
I find an ice pack to the neck to be helpful for the ones invoving lots of neck pain.
Capt Deb
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Tylenol comes in 500mg (extra strength) and 325 mg (regular strength).
Try taking 825 mg (1 extra and 1 regular strength) for a week and then 650 mg for a week then 500 mg for a week. At least you would know at what dose your pain starts to break through.
Then, try and space out the hours between doses. Hopefully your Palmelor will take over before the pain breaks through.
Good Luck,
Janet
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Capt Deb:
How exactly do you apply the ice pack?
Janet: If I don't take 1000mgs of tylenol right before bedtime, I don't make it through the night w/out a headache.
Last night I upped the Pamelor dose and took it w/ 500 mgs of Tylenol instead of my usual 1000. Four pills ( 2 pamelor and 2 tylenol) seemed like too much to swallow all at once--so I swallowed only 3. This morning I got another bad headache. As painful as these headaches can be, they rarely last very long. It makes for a slow start to my day, but I'm able to get on with my activities--walking 2.25mi daily, making it to work.
Syl
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Syl,
Have you or your doctor figured out what nerve(s) is causing your pain?
Janet
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Janet:
No. We don't know what nerve is causing the pain.
Syl
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Syl,
Since my headaches most likely originate in the back of the head, that's where the ice pack goes--I use the soft kind that have gel in them that are reuseable. I also try to give my neck some good support. Sometimes I'll get a second one out for the top of my head.
Capt Deb
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Syl,
Do you think your pain is originating from the trigeminal nerve or the nerves in the back of your head?
Janet
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Janet:
I'm not sure where the trigeminal nerve is, but the headaches usually originate at the back of my neck.
Syl
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Today is the first time in a looooooong time that I don't head straight for the Tylenol. The Palmelor is kicking in. However, it does come with some unpleasant side-effects (vomiting, fainting). This happened yesterday, but I do feel better today, and I got my appetite back.
Syl
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syl,
those are some pretty tough side affects. Please keep your PCP or prescribing physician updated on these side affects... not to be brushed aside.
Hang in there!
Phyl
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Phyl:
I did inform my neurologist about these side-effects. He said to discontinue the rx as long as I feel unwell.
Syl
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Hi syl,
sounds good... I'm glad to hear that they are on top of things with this and here's hoping you feel better soon. I know many of the meds I'm on cause me nasty side affects (dr's know I am kinda hypersensitive to meds and they watch me like a hawk) and hoping these will subside for you quickly.
Hang in there and pls feel better.
Phyl
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Syl,
The trigeminal nerve is inside your skull and can be a source of intense facial pain when the nerve is irritated. The pain is usually on one side, especially around the jaw and teeth. Some of the AN patients on this site have been diagnosed with Trigeminal Neuralgia. This sounds different than what you are describing.
Is your back of the head pain mostly on one side radiating to the neck and sometimes behind the eye? Does it sometimes kick into a full migraine type headache?
Janet
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Syl, since your headache originates in the back of your neck have you ever had an occipital nerve block? I go to a pain clinic about every 2 months and have one of these done and WHAT a difference in my pain level. I am convinced my headaches have multiple components so my plan of attack is multi-faceted. Check out the nerve block thread here in the headache section for more details.
Capt Deb 8)
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Janet:
My headaches usually originate in the form of a brain freeze feeling at the back of the neck. If not addressed w/ meds and heat, they spread upward to the top of my head. Nausea, vomiting, and sweating sometimes are part of these headaches, but not the light sensitivity. Usually, the headaches involve both sides of my head--not just the AN side.
Capt Deb:
Seeing the neurologist I am currently working with to address my headaches is my first step in dealing with the headaches. Despite the unpleasant side-effects (which have subsided by now), Palmelor may just be working. My neurologist says he's had alot of success with this drug in dealing with headaches. Yesterday, I only needed 325mg of Tylenol, and I made it just fine through the night without any headaches. I did wake up with soar neck muscles, but not a headache. I began to get a headache a little while ago, but it originated from the part of my head that hit the concrete first the other day that I passed out on my porch from the side-effects of Palmelor. This is sounding like some vicious cycle. Weren't the dizziness and passing out part of the symptoms that made me go to the Dr. in the first place 1.5 yrs ago?
Amazingly enough, I do see a light at the end of the headache tunnel.
Syl
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Syl,
The back of the head has a lot of nerves outside the skull. The nerves when irritated start firing (brain freeze) and cause the muscles to contract, spreading the pain to different areas. (Heat helps to stop the muscle contractions.) If your doctor can figure out what nerve(s) is being irritated and what is the cause of the irritation, you might be able to get it fixed.
It took me 4 years before I finally found what was causing my headaches and get it fixed. After I did, it seemed so obvious. In my opinion a good portion of these headaches are not from the tumor but from simple nerve damage outside the skull, as a result of the surgery or head frames. (If you mention this to your neurosurgeon they might think you are blaming them and get a little defensive.)
I am happy to hear you are getting some relief from the Palmelor. Pain is so exhausting. I hope you are painfree and back to yourself soon.
Janet
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Janet:
How did your Drs. figure out what was causing your headaches? What kind of tests were done? And how did they eliminate your pain?
I do believe that as a result of the surgery, we end up with a head injury that causes the headaches. Dr. O'dell did say that my headaches are like those of others who undergo brain surgery and like those suffered by people who experience head injuries.
Syl
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Syl,
Great questions. I'm following this topic with great interest. Hope you are feeling better.
Anne Marie
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If you start researching the kinds of head pain people who have had other kinds of brain surgery or who have sustained head injury experience, you'll have some aha! moments. You'll recognize many of the descriptions. I think that one of the international headache societies has even suggested including post AN-surgery head pain as a specific sub-category of post-op pain.
staypoz
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Staypoz,
Do you have that website?
Anne Marie
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Syl, Janet's surgical fix is chronicled in "Occipital Nerve Surgery" topic further down in this section.
Capt Deb
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Hi all,
I decided I had to systematically eliminated possible causes of my post-surgical AN headaches on my own. My doctors were helpful in giving me what I requested.
I went to my neurosurgeon and asked for a MRI of my neck to eliminate neck problems as the cause. Results: negative
I thought maybe it was a loose screw in my titanium plate. We taped a bebe over a tender spot near my incision and did an X-ray. Results: Tender spot not over a screw.
I thought I might be allergic to the titanium plate. I researched this topic and found that it is highly unlikely to be allergic to titanium.
I knew that if I held my chin down or turned to the side for too long the pain would start. I knew that Indocin (strong anti-inflamatory) lessened the brain freezes. I knew that Botox injections helped lessen the muscle contractions that followed. I knew that my pain felt like a "raw nerve". My conclusion: Irritated nerve from head movement resulting in severe pain and muscle contraction. I was becoming convinced this was a mechanical problem.
I started looking up nerves and nerve pathways. I found that an irritated occipital nerve was where I was feeling the most severe pain on the opposite side. The more I read, the more I was convinced that this nerve was part of the problem. It even explained the pain behind my eye, neck and shoulder.
I asked my headache neurolgist to refer me to a pain clinic for a diagnostic nerve block of my occipital nerve. Conclusion: Instant relief. The occipital nerve seemed to be a causitive factor.
Someone posted information about a scar neuroma. I had 2 tender spots on my incision. One radiated towards my ear when pressed. This made sense to me.
Someone on this site wrote they were referred to a peripheral nerve surgeon at Georgetown University. He specialized in nerve pain, including the occipital nerve.
I sent him my all my records and he agreed to see me. I flew out and he gave me the first explaination from a doctor as to what the problems were likely to be and how it could be fixed. Finally, someone who was making sense and had a unique skill to fix it! He said 80% chance I would feel better. He said that he would not make me feel worse.
Regarding the surgery, my headache neurologist and internist were encouraging. My neurosurgeon wouldn't commit to an opinion. The pain doctor said "don't get your hopes up". I felt I was grasping at straws but knew I couldn't keep taking such high doses of Indocin for much longer without damaging my liver and kidneys. My stomach was starting to give me trouble. I knew I had to try something. I did have my doubts.
I later had outpatient surgery. He fixed a scar neuroma of the lessor occiptial nerve and the aricular nerve that was embedded in the titanium plate. I have zero pain on the AN side of my head now. The most severe pain was from a blood vessel that was piercing through the occipital nerve. This has improved dramatically and I have not had an Indocin since surgery. I still have a spot on that side that fires up but Tylenol takes care of it. It is slightly farther up than the spot he fixed. I plan to have that fixed in April. I am not doubtful this time.
Whew.... that was long. Hope this helps someone in search of relief from these horrible headaches.
Janet
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Whew.... that was long. Hope this helps someone in search of relief from these horrible headaches.
Janet,
I just want to say that I appreciate you making the headache posts that you do. I don't suffer this particular symptom, thank goodness, but I know that some do, and your posts are consistently informative and hopeful. Your post illustrates well the kind of effort and persistence that may be necessary in some cases, whether the specific cause turns out to be the same or a different one.
I confess I also find the concept of a blood vessel piercing through a nerve a little bit fascinating, even though it sounds excruciatingly painful. Yikes. :o
Steve
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Thanks Steve,
I had migraine type headaches before surgery on my non-AN side but nothing like after my AN surgery.
I believe my occipital nerve and blood vessel were very close together before surgery, causing the migraine type headaches.
It sounds reasonable that pressure from a head clamp or prolonged positioning could have caused the vessel to smash into the nerve when forced against the skull.
This was taken from the operating room report. "There was significant tightness around the trapezial tunnel where the nerve was penetrating the muscle fibers to the occipital area. The nerve at that site had a vessel piercing through the nerve itself and that vessel was released, a branch of the occipital venous plexus."
No blame to anyone. I think my anatomy before surgery put me more at risk for this to happen.
Janet
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Janet:
Thank you so much for all the information you are providing. All the time and research and effort you have put into finding a solution to your post-surgery side-effects is very inspirational. It only reinforces what I believe--we need to participate more actively in finding solutions to our AN issues.
Syl
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I'm into week 3 of my Palmelor treatment for headaches. I'm supposed to be taking 30mg of Palmelor by now, but since increasing to 20mg last week came with some very unpleasant side-effects, I'm still at 20mg/night. I am definitely seeing progress. I'm down to 325-650mg/day of Tylenol. That's an improvement from 2000mg+/day.
I no longer wake up with the brain freeze that tended to spread upward and to the rest of my head. Now, I get some pain along my surgery scar that tends to stay confined to the AN side of my head, sometimes throbbing at the temple. I first address that pain with a heating pad. Sometimes the heating pad alone gets rid of the pain. Tylenol is now my last resort, not the first.
Syl
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I'm into week 4 of my headache treatment with Pamelor. I almost feel like I did at the initial onset of my AN symptoms 1.5 years ago. I'm getting tinnitus in my good ear. The lightheadedness and dizziness have intensified. My energy level is way down.
I'm taking 30mg of Pamelor and am still taking 650mg of Tylenol. So it seems that I'm gonna have to increase the Pamelor dose yet again. On a good note, I am getting relief from my headaches. That's why my Tylenol consumption is down.
I'll continue updating
Syl
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Thanks for the update Syl. I know the frustration of the old medication merry-go-round, believe me! I think I've been on at least 12 for these beastly brainwrecks. I had to give myself a shot of Imitrex and leave the friggin BEACH today and GO HOME and that really pi$$ed me off! I sure hope the Pamelor gives you some of your life back. I myself lived in rebound land with OTCs and prescription pain meds for about 3 years before I found a decent neurologist at a headache specialty clinic.
Good luck to you--I'll be sending good thoughts your way.
Capt Deb P-)
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Capt Deb:
However bad my headaches get, they usually strike early in the day and I rarely miss work because of them. But with Pamelor, I'm having such a hard time getting through the day. I have no energy, especially when I increase the dosage. Just when I'm feeling a bit energized, it's time to increase the dosage again. Hopefully I'll find the dosage that works, that ends my dependence on Tylenol. But I'm sticking with the neurologists plan. It sure is hard.
I'll keep and eye out for your good thoughts.
Thanks
Syl
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Woo Hoo!!!!
I'm still taking 650mg of Tylenol daily, but today I went for hours without taking my first 325mg for the day. It was about 2 or 3pm before I needed one.
Syl
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Woo Hoo Syl! I'll celebrate any small milestone with you. This headache war does not sound like something I would sign up for.
Steve
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Thanks, Steve.
The Headache War is a nasty one. Once I've won this one, I will then be ready to accept the new me.
I've gone to physical therapy to help fight the Balance War--I'm still fighting that one, but do feel I'm winning.
I got a hearing aid after 3 professionals told me it wouldn't help. Though it doesn't do much with word recognition, I found it helps a great deal with directionality. That certainly makes me feel like a winner in that war.
I'm hoping I can win the Headache War by June 16, 2009, which marks 1 year since my AN surgery.
Syl
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I got a hearing aid after 3 professionals told me it wouldn't help. Though it doesn't do much with word recognition, I found it helps a great deal with directionality. That certainly makes me feel like a winner in that war.
Hi Syl,
If I have any hearing at all left after surgery, I will be INSISTING on a hearing aid. For me, directionality is VERY important. Word recognition would be great, but being able to tell where some sound is coming from is certainly important too! I'm so glad you posted about the usefulness despite the doctors concerns that you wouldn't see (hear?) much benefit!
Ernie
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Ernie:
My word recognition is around 20%. I'm not sure if that's considered severe or profound hearing loss. It put me in a bad place regarding hearing aids. I'm not a candidate for a BAHA because I've got too much hearing, and a BTE hearing aid has limited use for word recognition. Like you, I find that directionality is very important. That's why I decided to keep the hearing aid. I did find another benefit to wearing a hearing aid--it helps tone down my tinnitus sometimes. I thought that the amplification of noise would make my tinnitus worse in that ear, but it turned out to be quite the contrary.
Syl
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;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D
I'm now taking 40mg of Pamelor, and I have not had any Tylenol since Thursday afternoon. Yesterday throughout the day I felt a brain freeze. Each time it went away on its own. This morning I did get a headache, but it was a mild one. I was tempted to take a Tylenol, but I resisted and used only my heating pad. The headache lasted only about 20 mins, then I went back to sleep.
I think I found my dosage of Pamelor. I might just make that June 16 deadline to win the Headache War.
My kidneys and liver are smiling now.
Syl
;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D ;D :D
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Syl, that is great news! I hope there are enough smiley faces left for the rest of us! ;D
Steve
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That is awesome! Something for me to consider as I come out of surgery and head into recovery mode next week! Got to go easy on the meds and watch out for the rebound headaches. Check. That is my biggest concern really, the post op headaches.
Hang in there and here's hoping for headache free days ahead! <smiley face not displayed due to currently being out of stock>
Ernie
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Good for you Syl, at least one of us is winning the headache war :-* :-*
As you all know my beloved dr Louie (not a Dr, just a joke and part of my email address) works in a hospital. Yesterday a pain clinic nurse was up on his floor and he was talking to her. He called me to get all the names of the meds I am on. She said I am on all of the right meds and she explained to Louie what each one does, not that he could remember it all. She explained to Louie that when operating in such a small area on the cranial nerves these things DO happen, its just unfortunate I suffer from both headaches and facial pain. She was impressed that my Specialist knows what he's doing. Imagine that!! ::)
Anne Marie
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Thanks for the cheers and the humor you guys and gals.
Ernie:
I'm glad that you find the info on my posts helpful.
Ann Marie:
Isn't it reassuring when another professional backs up what your Dr. is doing? I just wish the meds did more for you.
Syl
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Now that i'm off tylenol, the dr wants me to up the dose of pamelor to 50mg/night. We'll keep it at that for a while. When the headaches go away, we can begin weaning me off pamelor. He said I could go on neurotin if i want, but i don't want. The headaches i'm getting, now that i'm off tylenol, are milder and go away with heat applied to the neck. It's only been since last thursday, Feb 26, that i've been off tylenol, but I'm hoping that most of those were rebound headaches. Only time will tell.
Syl
;D
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YEAH!!!!! Hoping you only have rebound headaches!!!! WwoooooooHoooooo!!!!!
Capt Deb P-)
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Hi Syl,
Sorry I haven't checked in in a while but very glad to hear you are winning the headache wars. I'm crossing my fingers that you'll be completely off meds in time for your one year anniversary in June.
Wishing you continued good healing,
Wendy
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I've been tempted a few times to take some Tylenol, but resisted. I haven't had any since Feb. 26. I'm up to 50mg of Pamelor. It's taking a little longer for my body to get used to the 50mg. So it makes me feel so sedated and groggy and sluggish. It's been about three of four days now that I haven't had a bad headache. I get the brain freeze alot and feel pressure at the top of my head and forehead along with much soarness in my neck. I also get a sharp and short-lasting pain somewhere around my AN surgery site. But it doesn't keep me down.
Looks like I'm making progress.
Syl
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Yesterday I finally began to get back some of my energy. I did wake up with a slight headache that stuck around a bit , but I went on with my day. The headache did go away and so did some of the wonky-headedness, dizziness and brain freeze. I was feeling really good--not 100% but I'll take this any day over how I've felt over the past 6 weeks I've been on Pamelor.
Today I woke up with a very soar neck, but no headache. Still feeling better!! ;D
Syl
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Feeling even better. Got more energy now. I resumed my daily walk today. I hadn't gone walking for 3 or 4 weeks. The brain freezez, soar neck, and pressure at the top of my head all seem to be fading away. I do, however seem to get slight pain when I'm due to take Pamelor.
Syl
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Syl ~
I just wanted to let you know how pleased I am to learn that Pamelor seems to be helping your headaches so much. May this situation only continue and further improve! :)
Jim
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Hi Syl,
Just being able to get out and walk again will probably do wonders for you! The increased blood flow is supposed to be the helpful culprit. I'm very glad to hear you have managed to subdue your pains and pressures and get some of your energy back! I haven't had much in the way of post-op pains, but it sure feels good to hear someone recovering from these issues, knowing that there is hope for those that are still in pain!
Ernie
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Yesterday I got a bad one. It went away then came back. Then went away and came back once more. My neck was really tight on both sides.
I'm fine today.
Ernie: I hope your pain free days never end.
Syl
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Syl,
Here's something interesting, I went on prednisone because of an on going sinus infection. I started off at 60 mg, my facial pain, temple, eye, ear, and tightness in my neck all disappeared. My sinuses are 100 % better, but of course the drug makes me NUTS and I got a full blow migraine. After a few days I started to taper off the drug. I'm down to 20 mgs now. My sinuses are good but all my facial pain is back, and for me 40 mgs is the magic number. I felt great, no pain, no craziness just unbelievable hunger. It is a wonder drug and to be pain free for a few days was worth all the craziness and migraine.
So glad to hear you are better today.
Anne Marie
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Anne Marie:
I wish you could enjoy more than just a few pain free days.
Syl
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Anne Marie,
Good work on connecting the dots! I also have noticed a connection between steriods and the head pain.
A number of people on this site reported the start of their headaches around 2 weeks post surgery. This is around the same time they finished taking steroids after surgery. (Me included.) That connection was one of many things that convinced me, I was experiencing an inflammatory problem of a nerve.
If you have surgery on you facial nerve, Anne Marie, are they expected to take a look at your trigeminal nerve as well. Is this thought to be the source of your pain?
Janet
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Hi Janet,
My MRI is scheduled for June 2nd, and I have a follow up with the specialist July 2nd. I hope this MRI is easier to read. In 2007 the report read, there is residual tumour extending from the geniculate ganglion posterioly along the tympanic portion to the posterior genu. There is T1 secretions within the mastoid air cells in keeping with post surgical change. In June of 2008 the report read, the residual mastoid air cells are fluid filled, which makes evaluation of the petrous temporal bone very difficult. However it is possible to see that the descending portion of the left facial nerve is larger than the facial nerve on the right. So who knows what this MRI will reveal.
The neurotologist that I see wants me to see a neurologist in my city. I was seeing one last year, but I didn't find her to be too helpful. I've called my family dr for a referral to another neurologist, but he needs to have the notes from the neurotologist first. I'm going to call the one I was seeing and get in there as soon as I can. I'm off of the prednisone and all of my pain is back. My sinuses have remained clear, but I'm on a steroid nasal spray so that is a contributing factor.
I agree with you that this is a definite inflammatory problem. My neck and shoulder are now bothering me more than ever. I'm taking toradol but it doesn't seem to be helping. I'm still on neurontin. To quote some here on the forum, "I'm in love with my heating pad". One for my face/head and one for my neck/shoulder. If I wasn't taking a sleeping pill I would not be sleeping. Scary to think of all the medication that is floating around my system, but I know if I didn't take it I would be worse off.
All keep you posted.
Anne Marie
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Anne Marie:
What are toradol and neurontin for, if you are still in so much pain?
Syl
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Hello everyone,
I just realized that I haven't had a headache since last Tuesday, when I feared I wouldn't make it to work. That's almost a week of freedom from those ugly headaches that tend to greet me when I wake up.
I'm still having some pain throughout the day, such as the soar neck, or the sharp short-lasting stabs of pain somewhere around my surgery incision. But this is all very minimal compared to the debilitating headaches.
But wait, there's more. I feel even better than I did last week. I still feel tired at times, but I'm not dragging myself out of bed, around the house or around work like I did for the past 6 or 7 weeks. Actually, I haven't felt this good since before my surgery back in June 2008. Even the dizzines has diminished. Makes me wonder if Tylenol was adding to the dizziness.
I hope it lasts.
Syl
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Hi Syl,
Got any wood nearby to knock on? :D That's some awesome news for sure. I get those short bursts of pain, not really the incision, but behind it, inside the head. Lets go for another headache free week, shall we!?!?
Ernie
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Syl,
Oh HAPPY DAY ;D Doing the happy dance!! My fellow Canadians know what the happy dance is ;)
toradol is an anti inflammatory and neurontin is for neuropathic pain and HEADACHES.
Anne Marie
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Anne Marie,
You can get a second opinion by sending your MRI and info to the states. It doesn't mean you need to have surgery or treatment with them. It might be reassuring to know that other doctors agree with the plan set forth by your docs.
Your situation sounds complex and it might be helpful to get a second opinon from experts in AN's, facial neuromas and trigeminal neuralgias. The Skull Base Institute in LA is a Center of Excellence that might have some insight, as they deal with all of these issues.
http://www.skullbaseinstitute.com/second_opinions.htm
Best Wishes,
Janet
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Thanks Janet I will looking to this after my next MRI in June.
Anne Marie
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Syl,
Oh HAPPY DAY ;D Doing the happy dance!! My fellow Canadians know what the happy dance is ;)
Anne Marie
But isn't the Happy Dance one of Canada's great gifts to the world? I don't think it's American.
Syl
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Syl,
One of many gifts. I think poutine is the greatest gift!!
How are you feeling today?
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Ane Marie:
I must confess I had to google poutine. Don't know where I can get some in the Stockton, California area.
Today, I woke up with a soar neck fearing it would develope into a headache. But it didn't!!! Today, it is officially a whole week without a nasty headache. I recently began to feel that my head and body are connected--less wonki-headedness. Haven't felt that since before my surgery back in June of 08.
Syl
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Syl,
Such wonderful news. One day I will be celebrating along with you!
If you get the chance to have poutine, I'm sure you will enjoy it!! Had some on the weekend when I was out shopping with my husband.
*Warning anyone with heart problems or high cholesterol, poutine is not for you!* ;)
Anne Marie
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I recently began to feel that my head and body are connected
That is a good sign. Very helpful if you are going to be wearing a hat. ;D
Steve
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Yeah, Steve, check out my hat.
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Syl! What a perfect color for you! How much longer do you suppose it will be before every postie here has an avatar with a knit hat on? :)
Ernie
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That's what I'm talking about. Looks great, Syl!
Is that a cell phone picture?
Does it help with headaches? ::)
Ernie, unless some others join in on the knitting, I don't think I can keep up, much less catch up. But I will try. :)
Steve
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Ernie:
Looks like steve can use some help. You still have 2 week before you go back to work, don't you?
Stevie:
I took that photo with my camera. Maybe I didn't wear the hat long enough because I got a headache early this morning. Maybe I need to sleep with it on.
Syl
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Syl,
I went to bed with a headache and I still have one today. If I didn't take the sleeping pill last night I would not have slept.
Good news, I got an appointment with the neurologist for Tues April 7. My GP would not give me a referral to another one, so I called the one I was seeing in 2007. Her receptionist told me a needed a referral because it has been 18 months since my last appointment. I kind of lost it, I apologised I knew it wasn't her fault but that didn't help me. Yesterday morning when the phone rang I had the shock of my life....I had an appointment. I guess persistence pays off, or was it my anxiety and tears?
Anne Marie
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Excellent news, Anne Marie!! I hope the neurologist can help you.
Syl
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Me too!!! :'( It's been a rough weekend. I hope I have all of my headaches before my husband and I leave for our vacation/honeymoon, 25 years later, one apartment, two homes and four wonderful sons later ;)
Anne Marie
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Anne Marie:
Yes, let's hope you are as good as new and able to make the most of your 2nd honeymoon.
I have to tell you how great I feel today. I work a 2nd job on Sundays. I help out at my sister's grocery store making tortillas. It demands a bit of physical work, some heavy lifting. I'm only there for 3 or 4 hrs on Sundays. By the time my shift is up I usually have a brain freeze and need to sit and rest because of the slight dizziness.
Well, today I was working the conveyor belt where the tortillas are collected and stacked. Remember the I Love Lucy episode where Lucy and Ethel are working at the chocolate factory? It's something like that. If you're too slow, the tortillas get past you. Let me tell you it's quite challenging for our vestibular systems, seeing all that movement. I thought I'd be really dizzy at the end of my shift, but I wanted my vestibular system to get a bit of a workout. It was a vestibular workout, but I feel great. I have energy, my head and body feel quite connected.
And, this morning I didn't even wake up with a soar neck. I'm sure tomorrow my body will have a delayed reaction to today's activities. And that's ok.
Syl
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Sly,
Too funny ;D I think that "I Love Lucy" was one of my most favourite episode, next to her grape stomping for the vino making.
I hope you sleep well tonight and do not wake up with a sore neck or headache!
hehehehe too funny,
Anne Marie
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Headache-free mornings are outnumbering the days I do get headaches. Even when I do get a headache, it's milder--still hurts, but I haven't had one that makes me cry in a while. I'm also getting the brain freezes less often. I now feel that I will be able to put this all behind me one day soon.
Syl
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Syl,
It's so good to hear that your headaches are becoming fewer and farther between, as well as less intense. Post-operative headaches was my number 1 concern with having retrosigmoid, with facial palsy the number two concern. Hearing preservation was third.
Since I do suffer from migraines (pre-surgery and post), I understand how debilitating bad headaches can be.
Sending some thoughts and prayers your way that this is the beginning of the end of all your headaches!
Ernie
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Ernie:
I was very concerned about headaches when I chose retrosig, but I was more worried about my facial nerve. The reason I went ahead and chose retrosig was because the docs said that since they've been using some sort of surgical cement to patch up the skull, headaches haven't been as big of an issue. I'm not sure what they ended up patching my skull with. But I do know that they had to go to Plan B because my skull is very porous and it would end up absorbing the other stuff.
Syl
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By now its well over a month that my love affair with Tylenol ended. Have had some setbacks. Each time I update to say I'm doing fine, a headache strikes. Got a headache on Monday morning but I've been fine since. For a couple of nights a teeny headache woke me up, but went away soon after--no heat, no drugs. But I have been really tired this week and dizzier than my usual self. Feeling better today.
Syl
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Syl,
Glad to see that you've conquered the rebound effect. I went through it myself a while back. I'm not on any headache meds myself these days-- after a cyst was found on my liver, I decided a de-tox was in order. Headaches come and go but are much improved in the past two years since I started on preventives. I'm praying that the Headache Monster has been chased back to his cave and ceases bothering you too much.
Hugs,
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-smiley-12.gif)
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Capt Deb:
Do you think all the meds could be the cause of the cyst? I do worry about the health of our kidneys and liver, esp. since we need them in good health to take the MRI contrast.
Syl
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I saw the neurologist a few days ago and she is sending me to a Pain Dr, for some good old injections. I'm hoping to get injected before my holidays next week but I do not see that happening. I'm also on a waiting list for a pain clinic. My head and face are really bad today. It is the pain behind my left eye that is driving me crazy. :'(
Good question Syl, I too worry about my kidneys and liver.
Anne Marie
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I am a Tylenol junkie myself. I would lke to stop taking them but not sure where to go. My headaches occur on the oppsite side of my AN. Is this normal or is this just were my migraines are? My AN is on the left side and headache are always on the right
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Patch--I replied to your post in new thread called "headaches."
Anne Marie--the pain clinic has been a lifesaver for me--it's where I get me nerve blocks--good luck to you and I hope they get you in soon. Also I hope you can get your injections before your holiday. They are not fun but they do help.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-smiley-12.gif)
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Thanks my Capt. Whether or not I have the nerve block before Wednesday really doesn't matter. Louie and I are going to have the best time ever in The Dominican Republic. All inclusive 5 star resort, ocean veiw suite and the sound of the ocean......heavenly!! So I'm telling the HEADACHE MONSTER to back off or else...
Anne Marie OX
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This Sunday I worked the conveyor belt at the tortilla factory again. It's turning out to be really good therapy. After 4 hrs of challenging my vestibular system, I felt better than I've felt all week. Not only am I not dizzy, but I'm full of energy.
I'm going to continue my therapy. Just don't tell the tortilla factory owner or she will want to bill me for the therapy sessions.
Syl
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Syl:
This is terrific news! Often , challenging ourselves (and our balance system) can have very positive results. I'm pleased to learn this seems to be the case with you. Congratulations! :)
Jim