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Chronic Headaches with History of Pituitary Tumor
Hello! My husband has been fighting the same headache for 12 yrs now. They stumbled across a pituitary tumor back in 2010. He was diagnosed with Acromegaly. The tumor was very large and had formed it's own blood supply, but thankfully he doesn't look like a classic Acromegalic.
He's had two trigemminal nerve blocks that have been unsuccessful. He's gone through 2 rounds of Cyberknife radiation therapy.
So basically here's my question. We've been to so many dr's and have lost count. No one can figure out the headaches and have all given up on him. He gets a shooting pain in the corner of his left eye and it goes above his eyebrow down to his ear and wraps around the back of his head. He has tremors in his hand all the time, but when a headache attacks, his hands shake as if he has Parkinson's. You can look at him and tell he's in a world of pain. He can't function when they hit and sometimes they drop him to the floor. He had a history of spinal fluid leaks after his surgery (3 yrs ago) but all the MRI's and CT's all show a normal brain, no leaks.
Yesterday, his headache started and his hands began to shake. About 45 minutes later, his ear started leaking clear fluid and his pain got worse.
He has been on every medicine imaginable, and nothing works besides Loritab. No, he's not a pain med junky. He's taken every anti-seizure medicine, anti-depressant known and even Lyrica, which helped for a while but no longer does. These meds make him very sick and zombie like.
Please Please, does anyone have any ideas what this could be?! We know it's not tumor related and it's not migraines. We're desperate! Thank you!
He's had two trigemminal nerve blocks that have been unsuccessful. He's gone through 2 rounds of Cyberknife radiation therapy.
So basically here's my question. We've been to so many dr's and have lost count. No one can figure out the headaches and have all given up on him. He gets a shooting pain in the corner of his left eye and it goes above his eyebrow down to his ear and wraps around the back of his head. He has tremors in his hand all the time, but when a headache attacks, his hands shake as if he has Parkinson's. You can look at him and tell he's in a world of pain. He can't function when they hit and sometimes they drop him to the floor. He had a history of spinal fluid leaks after his surgery (3 yrs ago) but all the MRI's and CT's all show a normal brain, no leaks.
Yesterday, his headache started and his hands began to shake. About 45 minutes later, his ear started leaking clear fluid and his pain got worse.
He has been on every medicine imaginable, and nothing works besides Loritab. No, he's not a pain med junky. He's taken every anti-seizure medicine, anti-depressant known and even Lyrica, which helped for a while but no longer does. These meds make him very sick and zombie like.
Please Please, does anyone have any ideas what this could be?! We know it's not tumor related and it's not migraines. We're desperate! Thank you!
Hiya again,
Yes, I agree that we do have some similarities. It is not that uncommom for pituitary or craniotomy patients to have pain from nerves that were damaged by surgery. Post surgical CSF leaks are not unheard of either. It's just unusual for folks to have both, from what I can gather, IS your husband still leaking? That ear thing sounds suspicious.This is important, as a csf leak can be an entryway for meningitis. Spinal headaches are also really painful.
Going to a pain management center has been very helpful with my head pain and leak issues. The doctors at the pain center referred me to various specialist for help and oversaw things. They were diligent about making sure that I was not leaking any more and worked with me to find a combination of treatments that help my pain.
Radio Frequency -ablation or Radio frequency -pulse treatments change how certain fibers within nerves act supposedly calming them down. You could look this up on the internet, to find out more about it. I am currently having RF treatments to two sets of nerves on both sides of my head every six months. My doc is treating the supra-orbital and the spheno-pallatine ganglion.
Many of the larger university based health centers are doing more of these treatments to facial nerves in addition to the spinal nerves.
Botox has been around for a long time and is pretty much everywhere. I go in every three months for Botox and find that it lowers the intensity of my head/facial pain. I don't think that it could make things worse, but sure could be helpful?
I also take a few medications for my pain as well, one is an opiate another a preventative. Opiates and Anti-inflammatories (like Ibuprofen) can cause rebound pain. So it is important to have your doctors watching out for this. For example; with the opiate medication and I have learned that I periodically have to go off of it, for a few months, to reset my tolerance.
Maybe your husband could go to a larger pain center for an assessment? They would look to all causes, including sleep apnea, and get those things under good control while treating his pain.
I underwent a sleep study myself several years ago. It was found that I was not getting stage 3 and 4 sleep. So a medication as added to help and getting more and better quality sleep helps me a lot. Acromegaly is known to cause sleep apnea, so you are right in that he should be evaluated for that.
I hope that this gives you some ideas-
Horselip
Yes, I agree that we do have some similarities. It is not that uncommom for pituitary or craniotomy patients to have pain from nerves that were damaged by surgery. Post surgical CSF leaks are not unheard of either. It's just unusual for folks to have both, from what I can gather, IS your husband still leaking? That ear thing sounds suspicious.This is important, as a csf leak can be an entryway for meningitis. Spinal headaches are also really painful.
Going to a pain management center has been very helpful with my head pain and leak issues. The doctors at the pain center referred me to various specialist for help and oversaw things. They were diligent about making sure that I was not leaking any more and worked with me to find a combination of treatments that help my pain.
Radio Frequency -ablation or Radio frequency -pulse treatments change how certain fibers within nerves act supposedly calming them down. You could look this up on the internet, to find out more about it. I am currently having RF treatments to two sets of nerves on both sides of my head every six months. My doc is treating the supra-orbital and the spheno-pallatine ganglion.
Many of the larger university based health centers are doing more of these treatments to facial nerves in addition to the spinal nerves.
Botox has been around for a long time and is pretty much everywhere. I go in every three months for Botox and find that it lowers the intensity of my head/facial pain. I don't think that it could make things worse, but sure could be helpful?
I also take a few medications for my pain as well, one is an opiate another a preventative. Opiates and Anti-inflammatories (like Ibuprofen) can cause rebound pain. So it is important to have your doctors watching out for this. For example; with the opiate medication and I have learned that I periodically have to go off of it, for a few months, to reset my tolerance.
Maybe your husband could go to a larger pain center for an assessment? They would look to all causes, including sleep apnea, and get those things under good control while treating his pain.
I underwent a sleep study myself several years ago. It was found that I was not getting stage 3 and 4 sleep. So a medication as added to help and getting more and better quality sleep helps me a lot. Acromegaly is known to cause sleep apnea, so you are right in that he should be evaluated for that.
I hope that this gives you some ideas-
Horselip
Wow! Sounds alot like what he went through. They talked of doing Botox, but he wasn't sure if it would work. The only thing that helps the headaches is Loritab, which is getting impossible to get. The dr's think he's abusing it, which he's not by any means! What is the Radio Frequency therapy? I've never heard of that.
We've looked into reflexology and acupuncture. We've also realized that his sleep apnea is getting worse. He doesn't snore, but he does stop breathing in the night. I'm trying to get him into a sleep lab.
Thank you so much for writing! I'm so glad to know we're not alone!
We've looked into reflexology and acupuncture. We've also realized that his sleep apnea is getting worse. He doesn't snore, but he does stop breathing in the night. I'm trying to get him into a sleep lab.
Thank you so much for writing! I'm so glad to know we're not alone!
I am a post-surgical Pituitary patient who has had headaches for 7 1/2 years to the day of my surgery. Maybe by telling you what I have/am going through you might get some ideas?
I also suffered from CFS leaks and has two skull base repairs; one in 2008 and another in 2010? I think. in late 2011, my ear started leaking clear fluid (That we assume was CSF) and I was set to have a procedure to confirm this. Anyways, I was able to go onto bed rest where I stayed flat as much as possible. I was only up for a total of about 45 minutes a day. I also drank plenty of fluids and used caffiene. The third "leak" sealed up on it's own after about 2 weeks of this.
Spinal headaches are just awful. The intense spinal headaches and the mind numbing and balance issues have subsided. I still have a deep throbbing type headache that is different from the CSF ones. It is centered about one inch over my eyebrows and it is constant for the most part.
Concurrently I've seen neurologists and entered into Pain management. Late last year I had another spinal tap to check my CSF pressure and it was good so we think that I am not leaking any more.
So now, every six months I am having Bilateral Radio Frequency ablation of the sphenopallatine ganglion and also Pulsed Radio Frequency of the Supra-orbital nerves. I also receive botox every three months.
Med-wise I tried a LOT of combos. As of now, I take Inderal, Oxycontin and use a lidocaine nasal spray. This is in addition to the pituitary hormones that I take for Panyhypopituitarism and Diabetes insipidus.
With this combo I am getting relief. With the treatments, which started early this year, I have 3-4 head pain free days a week and when I am having pain, it is of a lower intensity.
I am just about to go into my second treatment cycle of the Botox, RFAs and pulsed RF and the meds are being monitored.
Feel free to get in touch if you'd like more info or?
Sincerely,
Horselip
I also suffered from CFS leaks and has two skull base repairs; one in 2008 and another in 2010? I think. in late 2011, my ear started leaking clear fluid (That we assume was CSF) and I was set to have a procedure to confirm this. Anyways, I was able to go onto bed rest where I stayed flat as much as possible. I was only up for a total of about 45 minutes a day. I also drank plenty of fluids and used caffiene. The third "leak" sealed up on it's own after about 2 weeks of this.
Spinal headaches are just awful. The intense spinal headaches and the mind numbing and balance issues have subsided. I still have a deep throbbing type headache that is different from the CSF ones. It is centered about one inch over my eyebrows and it is constant for the most part.
Concurrently I've seen neurologists and entered into Pain management. Late last year I had another spinal tap to check my CSF pressure and it was good so we think that I am not leaking any more.
So now, every six months I am having Bilateral Radio Frequency ablation of the sphenopallatine ganglion and also Pulsed Radio Frequency of the Supra-orbital nerves. I also receive botox every three months.
Med-wise I tried a LOT of combos. As of now, I take Inderal, Oxycontin and use a lidocaine nasal spray. This is in addition to the pituitary hormones that I take for Panyhypopituitarism and Diabetes insipidus.
With this combo I am getting relief. With the treatments, which started early this year, I have 3-4 head pain free days a week and when I am having pain, it is of a lower intensity.
I am just about to go into my second treatment cycle of the Botox, RFAs and pulsed RF and the meds are being monitored.
Feel free to get in touch if you'd like more info or?
Sincerely,
Horselip
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