ANA Discussion Forum
Archive => Archives => Topic started by: Sefra22 on July 15, 2006, 06:50:12 pm
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When I spoke to Dr. Slattery from House Clinic last week, I told him I have been having headaches on my AN side right at the base of my skull. I have only had these particular headaches for 2 years. He told me that "these tumors do not cause headaches."
So, a few days later when I met my neurosurgeon, I told him about the pain I was having, and he said the same thing as Dr. Slattery. I asked him if they could be psychosomatic, and he just kind of looked at me with raised eyebrows as if to say "What do you think?" I must admit that since my diagnosis last month, they have been increasing in frequency and intensity. I'm cool with the fact that it might "be all in my head" (pun intended), but I wonder does anyone else have them? What can I do about it, real or not, pain is still pain. :(
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Sefra,
I was told the same thing............basically that AN's do not cause headaches. I have headaches prior to and also after the AN so I figure it's something else. I stopped all my medication (at least anything I took for headaches) and found that part of my problem was rebound headaches but even without the rebound headaches, I am getting what I see as barometer headaches.....when the weather is changing, my head is full and pounds like you wouldn't believe. I haven't pursued this yet because frankly, I am sick of doctors at this point in my life. I guess what I'm telling you is that maybe you should back away from taking any kind of meds for awhile and see how you do. The meds can actually cause headaches. It takes a week or so for your system to clean up, so to speak. During that time, try a little bit of caffeine (just a little bit, I used iced tea) and cold compresses on your head. The cold compresses also help me with my barometer headaches. You really can't lose much with this one because you aren't adding any new meds to your system but keep in mind, if you were taking something on a regular basis and stop it, the headaches can be kind of intense for awhile but if they ARE rebound headaches, they will calm down in a few days after they peak. If you try it, let me know how you make out.
Stat
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 Hi sefra,
just a thought,maybe the stress of dealing with everything is manifesting itself in the form of headaches?My own headaches and tension in my shoulders and neck pre op were extremely painful.They also seemed to get worse after my diagnosis.
I had several sessions with a shiatsu massage therapist in the 2 months before surgery and felt almost like my old self after each one.
Lots of positive thoughts and deep breathing helped to still my mind as well.
I may be way off but I think that stress can do funny things to our bodies.
Hope you are able to find something that helps to ease the pain.Take care,Jacobs
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I started getting headaches after diagnosis, and they stopped shortly after receiving treatment. I think mine were psychosomatic. On the other hand... search for "headache" on this board and watch the millions of posts pop up. I don't know how many of those posts are treatment-related and how many are pretreatment, but... you're not alone by any means.
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Personally, I think that the theory of ANs not causing headaches is bullhockey. The headaches coupled with ear "fullness" are what sent me to the doc. I'd get these real whoppers, always on the AN side and originating in the neck and back of my head.
Post surgery, they intensified until at 9 months I was virtually bed-ridden for the better part of 2 years.
Presenlty I'm getting help at a specialty clinic
Capt Deb
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Hi capt Deb!
Hope this link comes thru...
it indicates headaches can be very much a symptom of ans!
http://www.nlm.nih.gov/medlineplus/ency/article/000778.htm#Symptoms
i have found other sites and read research reports that say 10-30% of aners can have an headaches too.....
keep swashing,
Windsong
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forgot to add this link also...
http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/9407.html
(also mentions headaches)
Windsong
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I will start off with I have not read anyone else's response....but if I'm understanding you correctly you are having headaches now...been disagnosed and not treated and you've got two doctors telling you AN"s don't cause heaches? I say they need to walk the PLANK! I had extreme migraine type headaches for almost a year before I was diagnosed. My treating surgeon started me on decadron which completely stopped the head pain...note I said head pain...it wasn't until after I the pain stopped that I realized it was different than the migraine type headaches I'd suffered from in the past. The ANs might not cause heaches in the tylenol taking sense but they did cause me severe head pain which prevented me from a normal life!
Hope that insight helps.
M
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Thanks everyone for your reponses!                                                                                 ÂÂ
I stopped all my medication (at least anything I took for headaches) and found that part of my problem was rebound headaches but even without the rebound headaches, I am getting what I see as barometer headaches.....when the weather is changing, my head is full and pounds like you wouldn't believe.
I have not been taking anything for the new headaches as I have been a migraine sufferer since I was a teenager, and because of stomach issues, I only take Advil or Excedrin for the migraines. Oh, and the weather thing...I had a wicked headache right before a thunder storm last week!Personally, I think that the theory of ANs not causing headaches is bullhockey.
Me, too! ;)I started getting headaches after diagnosis, and they stopped shortly after receiving treatment. I think mine were psychosomatic. On the other hand... search for "headache" on this board and watch the millions of posts pop up. I don't know how many of those posts are treatment-related and how many are pretreatment, but... you're not alone by any means.
You know the funny thing is, I have not had a headache since I posted this thread! You guys are amazing! ;D
I will start off with I have not read anyone else's response....but if I'm understanding you correctly you are having headaches now...been disagnosed and not treated and you've got two doctors telling you AN"s don't cause heaches? I say they need to walk the PLANK...it wasn't until after I the pain stopped that I realized it was different than the migraine type headaches I'd suffered from in the past.
Yes, you understand correctly. You know exactly what I mean... the headaches are DIFFERENT! I know what a typical headache is, I know what a migraine is. That's what I wish the doc's would understand.
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With stomach problems you are allowed excedrin or advil? I was told to steer clear of them and only take tylenol which I means I might as well take nothing. Tylenol gives me the rebounds. Since I've been on nexium for years because of a perforated ulcer, I again use excedrin and I too have been a migraine sufferer for as long as I can remember. When I stopped my meds the daily headaches did stop for awhile, either rebounds, coincidence or both :/ Now it's hard to tell, a headache starts and can start as a killer then disappear only to reappear an hour or so later.......how to treat that? I am just trying to deal with it until I can get myself together and go to yet another doctor and start the cycle again! I don't like most doctors :(
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No I dont' like doctors either...too bad they aren't like puppies!
sefra I have noticed since my surgery everytime a storm comes I get a headache. I've been keeping a health log for the attorney...so I can relate to those storm headaches...it's a pain!! The decadron helped with my presurgery head pressure..of course it causes other issues which were ok since my head didn't hurt..who needs to sleep? LOL
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With stomach problems you are allowed excedrin or advil?
I only take them when absolutely necessary. Luckily, I only get a migraine about once a month. I do take Tylenol if my stomach is empty, but like you said, it does almost nothing, just takes the edge off until I can eat, then I'll chase it with Advil. I am on Nexium, too, for Acid Reflux.
sefra I have noticed since my surgery everytime a storm comes I get a headache.
Did you remember pain during storms before your surgery?
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I believe very strongly about "power of the mind". Up until my surgery, I could block out most pains. This ability has ceased post surgery where i have rotten headaches. This is due to the physical outcome of the surgery I had.
I was lucky and didn't have any headaches pre surgery. However, the stress of it all could be the reason for the headaches.
I'm not convinced that the medicao's have got it right either. They can't prove that the AN doesn't cause headaches
Laz
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Hi Laz
they can't prove etc.... i tried to quote it (quote from your post) lol...
the thing is that that there are plenty of patients with "headaches" that can say most emphatically that what they feel is nothing like anything they had before with any headache whatsoever.....whether migraine as may already be known by them/ a stress headache/ a headache triggered by weather or whatever..... doesn't matter.
The point is that some with ans get headaches all right.
and there is research saying ans can give some headaches.....
personally i think it's due to the nerves involved regardless of where the an began and then grew and regardless of what treatment was used...
i doubt an mri will say much....
more likely the fluids from the csf would.....
windsong
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Sefra; I haven't time to read everyone's responce to this right now (I'll do that later tonight) but I must add my two cents now....this is a particular "bone of mine".....the major complaint of mine for the four years before diagnoses was headache. I was seen by a doctor within the first year and I was diagnosed as psychosomatic and for the next few years pumped with various pain pills. By the time the GP sent me for a second opinion the tumor was no longer confined to the auditory canal etc. My point is this....in my opinion AN's do cause headaches and if the doctor's disagree they should think a little more rationally.....if something is growing where it shouldn't wouldn't it be painful?!
Kathleen
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Kathleen,
What you said...........that's how I was, with headaches constantly and they didn't "fit" anything that the doctors said to me about headaches and my doctor thought I was full of it but he was! It was and stilll is very frustrating. STill, all the doctors tell me that AN's do not cause headaches. I dont' think they can really see the light until they have walked in one of our shoes! Not that I wish things on anyone, but it's true, it's easier and sometimes comes clear when you experience what someone is trying to tell you. I am not one who can express myself well without alot of thought behind it and I can't seem to keep my thoughts straight. I do also believe that power of mind has something to do with it as well, but everything considered and tried and pain still existing, something is still wrong I would think :-/ Then again, why would I know anything about how I feel, I probably have no idea what I'm talking about. Doctors stink!
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Static: Doctor's sometimes are too connected to "the text-book" and need to be a little more personal with thier patient's and listen. This was something my GP agreed with me on when I saw her the second and last time I saw her for anything after my diagnoses and surgery.....she admitted she stopped listening to me and just put her faith in a specialist who had not listened to me either. If your doctor's aren't listening and you have the ability to get another....do it and change until you get one who'll listen.
Kathllen
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Kathleen,
I know you're right but I need to find the strength to put up with the BS and do it. What has happened with my gp is that I kept pressing and he couldn't help me so he sent me to a neurologist that I didn't like so I need to find another. I don't want to travel to the neurosurgeon in the City who did my surgery basically because he's a surgeon not a neurologist. I will call another practice when I can't take it anymore and go from there :/
Stat
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Static: I have yet to find a neurologist that is worth beans. The first one I saw didn't think I should have a tumor so didn't do the right tests and labelled me "nuts" hence the 3-4 years of being pumped with drugs from my GP, the next one was OK, he found the rpoblem but is a movement disorder specialist so felt post-op I only ever needed follow up with my GP and CAT scans then when I had a fluk seisure (don't drink alcohol when taking Prozac post brain surgery folks) he put in papers to remove my driver's licience then dischanrged me from his services....lead to some nasty conversations with his secretary, next one lied to me about my tumor regrowth (told me the MRI showed scar tissue and then when it showed growth of the so called scar tissue sent me to my neurosergeon and that's how I found out about the regrowth) and insisted that AN's don't cause headaches either before or after resection, the next stood at the foot of my bed while I was in hospital being investigated for low blood sugar and low blood pressure and told me he was asked to see me to rule out neurological cause for these things and that he thought these things were "in my head". Needless to say I have not seen a neuro. for several years...and I don't intend to see another if I can help it. You sergoen is the better best for follow-up's I'd say .
Kathleen
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The next time a doctor says that ANs don't cause headaches, ask the doctor on what basis and research are they arriving at their opinion. They should be able to back their statements up.
I think some of the doctors involved in AN treatment or diagnosis are afraid to admit a link to ANs and headaches for fear of litigation of not diagnosising soon enough or their treatment causing headaches and this gets in the way of treating the patients. It is easier to dismiss the headache since there are no lab tests or procedures to prove headaches exist. Just a hunch from my own experience. Since headache neurologists or pain docs make a living treating headaches, I think you'll find more results and expertise there. I did.
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static - not sure where you live outside of philly - but i'm in collegevile west of king of prussia and i really like my meurologist - his name is dr mcCarren and he has a practice right in collegeville - let me know if you would like his number. he spends a lot of time w/ you and follows up.