Rachel G Posted August 31, 2012 Share Posted August 31, 2012 Does anyone have strange feelings / chronic headaches so many yrs after their craniotomy? I had an SAH / clipping in 2005 and years later still have wierd head sensations (burning, aches, tingling) all around the head...not only at the surgery site. I've been checked out by numerous docs (GP, neurosurgery, neurology) and I've had several tests.....everything comes out clean so docs think it's nerve pain and anxiety. Anyone else have this? It's driving me crazy!!! Quote Link to comment Share on other sites More sharing options...
jess Posted August 31, 2012 Share Posted August 31, 2012 Hi Rachel I really wouldn't worry I get headaches all the time try not to let it get you down and I am ten yrs on I also get strange feelings occasionally and also dizzy spells. Jess.xxx Quote Link to comment Share on other sites More sharing options...
MaryB Posted August 31, 2012 Share Posted August 31, 2012 Rachel, Welcome. Even through everything checks out ok, have they spoke about some medication for nerve pain to see if that will help the headaches? Diabetics have nerve pain and get medication, just wondering. Not offering any medical advice just a question. Did they make you feel that since everything checked out ok you were going to have to just deal with it? LOL I did not have a craniomony, but I am still having stabbing head pains & other head pains a year later. Good luck, keep us informed. Maryb Quote Link to comment Share on other sites More sharing options...
Rachel G Posted September 3, 2012 Author Share Posted September 3, 2012 Thanks for the replies. A neurologist recommended neurontin for the nerve pain a few months ago but I never tried it....I think I will though. Do you guys have any idea why the burning/tingling is in whole head when my craniotomy was just on one side? No one seems to have a good answer and I'm curious to hear your thoughts. One more question....why headaches and strange head sensations so many yrs later? The first three years post op I was symptom free.??? Thanks for your support and time...I finally have a place to turn for support and answers Quote Link to comment Share on other sites More sharing options...
MaryB Posted September 4, 2012 Share Posted September 4, 2012 I sent you a PM as I was on Neurotin, Lyric and Cymablta. Quote Link to comment Share on other sites More sharing options...
Janet Posted September 4, 2012 Share Posted September 4, 2012 Hi Rachel I have suffered with chronic headpain since my clipping in 2006 after my G.P sending me for ct scans and being sent back to my Neuro-surgeon a few times he finally decided that as it had been constant for so long that it may be caused by a trapped nerve and no further action can be taken. I have been taking a low dose of anti-depressant for about five years that helps with the nerve pain it doesn't get rid of it completely and the pain can flare up quite badly at times but my G.P allows me to increase my dose from anything from 10mg up to 50mg as needed. I manage the pain as best I can but it can and does have an impact on my lifestyle. Quote Link to comment Share on other sites More sharing options...
Carl Posted September 5, 2012 Share Posted September 5, 2012 I had a constant haedache for at least 9 months. It was much like a bad hangover aggravated by sound and light. The doctor put me on a med that reduced by blood pressure, My headaches went away. Recently my job has changed I am not sure if that has cause my headaches to return, They are not the same as the original one, but I do need to take pain killers now and then I drink lots of water, try to get lots of sleep, although it is sketchy at times. I didnt have a craniotomy though Quote Link to comment Share on other sites More sharing options...
Gill C Posted September 5, 2012 Share Posted September 5, 2012 I don't often get headaches that I would associate with my clipping. I get sinus headaches which are pressure around the eyes & nose. The few headaches I have are pressure like on the top of my head around the scar area, sometimes a spot on my skull will feel tender but it doesn't last long. Most of mine will ease with paracetamol or ibuprofen although I don't reach for the pills as readily as I used to. If I've really overdone it my head will feel heavy & sluggish & I might feel dizzy Quote Link to comment Share on other sites More sharing options...
Leo Posted September 12, 2012 Share Posted September 12, 2012 Hi Rachel I have suffered with chronic headpain since my clipping in 2006 after my G.P sending me for ct scans and being sent back to my Neuro-surgeon a few times he finally decided that as it had been constant for so long that it may be caused by a trapped nerve and no further action can be taken.I have been taking a low dose of anti-depressant for about five years that helps with the nerve pain it doesn't get rid of it completely and the pain can flare up quite badly at times but my G.P allows me to increase my dose from anything from 10mg up to 50mg as needed. I manage the pain as best I can but it can and does have an impact on my lifestyle. Hi Janet, I'm 4 years post clipping and am still struggling with daily headaches and a strange sensation of pressure near the clipping site. I've seen many, many doctors. Only one mentioned nerve damage and the next time I had an appointment with him, he'd changed hospitals and none of my new doctors believe in nerve damage caused by surgery. They smile and look at me as if I am stupid. So, I still take pain killers which dull the pain but never fully gets rid of it. Quote Link to comment Share on other sites More sharing options...
jess Posted September 12, 2012 Share Posted September 12, 2012 hi I cannot say why it comes on after so long Rachael maybe you have been thinking about it more. Try not to worry and talk to your doctor. Jess.xxx Quote Link to comment Share on other sites More sharing options...
SarahLou Posted September 13, 2012 Share Posted September 13, 2012 Hi, I have head aches and temple pressure every day. Some days are much worse than others. I also get itchy, tickly feeling in the area of the operation. My SAH was 2yrs ago and I had clipping. I've kind of got used to it now. I still wake up every morning with bad head pains that take about an hour to ease. I've been offered nerve pain medication for my SAH area and for my transplant area as I've lots of nerve damage there, I've turned down this medication. Take care, SarahLou Xx Quote Link to comment Share on other sites More sharing options...
donnamarie Posted September 13, 2012 Share Posted September 13, 2012 I'm about 2 1/2 years on from SAH and I had coiling done an still suffer with daily headaches to me it's like a really long hangover no doctor can find a problem I've been for loads of scans and the both Annie's look fine. One coiled one watching. I'm waiting on another doctor ( neuro) to check it out but still waiting and waiting !!!! I've tried everything from tablets, relaxation , herbal medicines and faith healing ( I'm in the middle I the last one at the min so fingers crossed) next and my last option is acupuncture Hope you get something sorted Donna Quote Link to comment Share on other sites More sharing options...
Stephanie Rubeck Posted September 14, 2012 Share Posted September 14, 2012 hi Rachel, I didn't have a craniotomy, but I did have coiling and a permanent shunt placed after my SAH. I have almost constant headaches and at times, almost unbearable ones. The doctors told me that it could be a permanent side effect. Let's hope they're wrong Quote Link to comment Share on other sites More sharing options...
ashleyhollier Posted December 3, 2013 Share Posted December 3, 2013 Hey, no worries Rachel. Same thing here, except I am only 9 months out, if that. I get stabbing/burning sensations all over my head, not just at the incision site... and they HURT... I have not had it checked; had a craniotomy in March to have a brain tumor removed. The good news is that the pain comes and it goes... so at least I get a break in between. Did you ever figure out what was going on with you? Quote Link to comment Share on other sites More sharing options...
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