› Forums › General Melanoma Community › Cluster Headaches
- This topic has 12 replies, 3 voices, and was last updated 11 years ago by
MattF.
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- May 17, 2013 at 12:32 pm
A few years ago Joe began having cluster headaches….it came in cycles, lasting anywhere from weeks to more than a month at a time. Each one peaked at around 15-20 minutes and than began to subside. The event lasting about an hour, about the same time each day. Each time there was a physical change noticeable in the drooping and tearing of the eye. He said that the pain would literally go to his jaw line.
A few years ago Joe began having cluster headaches….it came in cycles, lasting anywhere from weeks to more than a month at a time. Each one peaked at around 15-20 minutes and than began to subside. The event lasting about an hour, about the same time each day. Each time there was a physical change noticeable in the drooping and tearing of the eye. He said that the pain would literally go to his jaw line. Seen by PMD, Dentist, Endontist (for a root canal that he didn't even need) Neurologist and Neuro/Opthamologist at Cincinnati Eye Institute and a CT was done (normal) Numerous meds tried the only thing that seem to work for short time only was Prednisone, however they did not want to continue having him on a steroid. There was nothing out there for his pain….when it came on…..he paced the floors waiting for it to subside. We were told that they don't know what causes cluster headaches and for some, it's doing or taking whatever helps the individual. Oxygen was suggested but he declined at that time.
Within the last two months, he began to have a blurred/foggy vision and an uncomfortable irritation in the eye. Seen by the eye doctor, he found that there were cataracts, but also evidence of possible past episodes of iritis. There was a thickened area on the sclera which he said was a cholesterol deposit. The arteries within the eye were engorged, which he said were sometimes typical of people with high blood pressure, however, Joe's BP is constant in the range of 110/60. So he said that there may be more going on, possibly systemic or involving connective tissue. It was then that Joe told him of his recent diagnosis. It was felt that with upcoming surgery and pending CT and MRI, we wait until the results of these come in.
So now I am wondering, whether or not his "cluster headaches" have really been that, or connected to the melanoma
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- May 17, 2013 at 1:27 pm
Is he being seen by a melanoma specialist.
Where is the melanoma located and more specifics on it are needed before we can help you. The profile is not filled in with enough information. Do you have copies of the pathology, if so post it and maybe we can offer some suggestions.
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- May 18, 2013 at 11:05 am
It was on the base of the neck, above the shoulder. He is under the care of melanoma specialists is original path report stated the following: Malignant Melanoma, Nodular, 2.5mm in thickness extending to the base of the biopsy with a separate portion of tissue showing a 2 mm thick portion of melanoma. Greater than 10 mitosis per millimeter squared. 3 mm of ulceration. Melanoma seen in vascular spaces. Clark level IV (deeper invasion cannot be excluded) No perineural invasion. Tumor infiltrating lymphocytes – non brisk. cautery effect. incompletely excised.
Seen by surgical oncologist and went in for a wide excision and sentinel node biopsy. 2 sentinel nodes were removed. Of the two, one showed metastatic malignant melanoma. Of the five supraclavicular nodes, none showed evidence. The path report also states that the largest focus of metastatic malignant melanoma measures approx 3mm in greatest dimension for the positive sentinel node. Lesional cells are present in the lymph node parenchyma and capsular sinus. No extracapsular extension is identified. An incidental predominantly intradermal melanocytic nevus is present in the excised site.
It just seems like an eternity when you are waiting for pending tests to be done….
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- May 18, 2013 at 5:50 pm
JoWen,
Ok I will try to be brief but the things in common are too great to ignore.
I got my first "headache" episode in June 2011…came on while I was driving..almost stroke like in my right eye. Right ear. Right side of head. the initial pain that literally was an 11 on the 1 to 10 lasted about 3 min then i just had pain in all the same places and it was bad. it was about 8am and i drove straight to my doctor.
My original description (after the stroke like one) was that I would get an irritation and spots/blur in my right eye vision and it would LITERALLY hurt to "see" through my eye…and from there I was off to the races.
They did a stroke work up and an MRI that was clear. for a year my gen practice doc tried various migraine meds.
Saw Neurologist in Apr 2012 and he immediately diagnosed Male Cluster migraine Headache Syndrome. Mine were a little different as i would get them and they may last 30 min subside..then return nd do that off and on for 4 to 12 hours.
and mine have been pretty consistant since 2011. he told me they may go away one day or you may never get a break it is science and it aint perfect.
I have seen optho eye guy – eye is normal some older scarring on the cornea or something but nothing he was concerned about. I have had 2 mri and everything shows fine.
Aug 2012 (after my dumbass left a mole sit for probably 3 years after noticing something funny about it) I was diagnosed with a 1+mm Malignant Melanoma on my right cheek at the base of my ear. Shave biopy so the Path was kind of screwed.
it read
Bres atleast 1+mm unknown total
Clarks: atleast IV into the reticular dermis
ulceration: unknown
Mitotic rate: 5/mm2
margins deep and peripherial
Sept 2012 I had WLE and SLN …3 pulled from back side of neck all clear and 2 pulled from clavicle area all clear.
I immediately want some answers on my headaches eys etc. Basically it was said. your lymph nodes are clear and your MRI is negative so your multiple neurological conditions are independent of Melanoma.
I am still not sure I believe or agree but I try not to be crazy about it. I have symptoms of and diagnosis of:
Cluster headaches, Horner's Syndrome, Some sort of trigeminal Neuralgia with Hemi Facial Spasms
I take a blood pressure med as my Headache Preventative (after 3 or 4 other tries) this one atleast has limited side effects and there seems to be some connection with blood flow? air? oxygen? etc.
For treatment I am on Oxygen and if you dont get to it and get comfy and get 15 min on the bottle before the headache kicks then it doesn't do anything….even when it works it is short lived in "curbing the pain from the "most intense" to still really bad. I also have Narcotic pain meds and nasuea meds. moderately helpful but do help to try and relax me atleast for the aftermath of what usually turns into a long painful, anxiety ridden day.
I get my first session of "botox" from my Neuro surgeoon in 2 weeks. he said it may help the facial spasms, cranial dystonia and pssibly the headaches.
As far as melanoma….I feel like it is in there somewhere but since I was neg on SLB I do not get a melanoma spec just an oncologiat who takes blood and checks how I'm feeling every 90 days. My original Onc Surgeon does ultrasound of the WLE to check the size of the lymph nodes in the neck every 6 months.
So there are alot of similarities. By the way he may want sedation or meds for the MRI (I can't take it in there, it is just to much for me)
I don't know how to help but it is the first time i have ever come across anyone with similar conditions
M
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- May 18, 2013 at 5:50 pm
JoWen,
Ok I will try to be brief but the things in common are too great to ignore.
I got my first "headache" episode in June 2011…came on while I was driving..almost stroke like in my right eye. Right ear. Right side of head. the initial pain that literally was an 11 on the 1 to 10 lasted about 3 min then i just had pain in all the same places and it was bad. it was about 8am and i drove straight to my doctor.
My original description (after the stroke like one) was that I would get an irritation and spots/blur in my right eye vision and it would LITERALLY hurt to "see" through my eye…and from there I was off to the races.
They did a stroke work up and an MRI that was clear. for a year my gen practice doc tried various migraine meds.
Saw Neurologist in Apr 2012 and he immediately diagnosed Male Cluster migraine Headache Syndrome. Mine were a little different as i would get them and they may last 30 min subside..then return nd do that off and on for 4 to 12 hours.
and mine have been pretty consistant since 2011. he told me they may go away one day or you may never get a break it is science and it aint perfect.
I have seen optho eye guy – eye is normal some older scarring on the cornea or something but nothing he was concerned about. I have had 2 mri and everything shows fine.
Aug 2012 (after my dumbass left a mole sit for probably 3 years after noticing something funny about it) I was diagnosed with a 1+mm Malignant Melanoma on my right cheek at the base of my ear. Shave biopy so the Path was kind of screwed.
it read
Bres atleast 1+mm unknown total
Clarks: atleast IV into the reticular dermis
ulceration: unknown
Mitotic rate: 5/mm2
margins deep and peripherial
Sept 2012 I had WLE and SLN …3 pulled from back side of neck all clear and 2 pulled from clavicle area all clear.
I immediately want some answers on my headaches eys etc. Basically it was said. your lymph nodes are clear and your MRI is negative so your multiple neurological conditions are independent of Melanoma.
I am still not sure I believe or agree but I try not to be crazy about it. I have symptoms of and diagnosis of:
Cluster headaches, Horner's Syndrome, Some sort of trigeminal Neuralgia with Hemi Facial Spasms
I take a blood pressure med as my Headache Preventative (after 3 or 4 other tries) this one atleast has limited side effects and there seems to be some connection with blood flow? air? oxygen? etc.
For treatment I am on Oxygen and if you dont get to it and get comfy and get 15 min on the bottle before the headache kicks then it doesn't do anything….even when it works it is short lived in "curbing the pain from the "most intense" to still really bad. I also have Narcotic pain meds and nasuea meds. moderately helpful but do help to try and relax me atleast for the aftermath of what usually turns into a long painful, anxiety ridden day.
I get my first session of "botox" from my Neuro surgeoon in 2 weeks. he said it may help the facial spasms, cranial dystonia and pssibly the headaches.
As far as melanoma….I feel like it is in there somewhere but since I was neg on SLB I do not get a melanoma spec just an oncologiat who takes blood and checks how I'm feeling every 90 days. My original Onc Surgeon does ultrasound of the WLE to check the size of the lymph nodes in the neck every 6 months.
So there are alot of similarities. By the way he may want sedation or meds for the MRI (I can't take it in there, it is just to much for me)
I don't know how to help but it is the first time i have ever come across anyone with similar conditions
M
-
- May 18, 2013 at 5:50 pm
JoWen,
Ok I will try to be brief but the things in common are too great to ignore.
I got my first "headache" episode in June 2011…came on while I was driving..almost stroke like in my right eye. Right ear. Right side of head. the initial pain that literally was an 11 on the 1 to 10 lasted about 3 min then i just had pain in all the same places and it was bad. it was about 8am and i drove straight to my doctor.
My original description (after the stroke like one) was that I would get an irritation and spots/blur in my right eye vision and it would LITERALLY hurt to "see" through my eye…and from there I was off to the races.
They did a stroke work up and an MRI that was clear. for a year my gen practice doc tried various migraine meds.
Saw Neurologist in Apr 2012 and he immediately diagnosed Male Cluster migraine Headache Syndrome. Mine were a little different as i would get them and they may last 30 min subside..then return nd do that off and on for 4 to 12 hours.
and mine have been pretty consistant since 2011. he told me they may go away one day or you may never get a break it is science and it aint perfect.
I have seen optho eye guy – eye is normal some older scarring on the cornea or something but nothing he was concerned about. I have had 2 mri and everything shows fine.
Aug 2012 (after my dumbass left a mole sit for probably 3 years after noticing something funny about it) I was diagnosed with a 1+mm Malignant Melanoma on my right cheek at the base of my ear. Shave biopy so the Path was kind of screwed.
it read
Bres atleast 1+mm unknown total
Clarks: atleast IV into the reticular dermis
ulceration: unknown
Mitotic rate: 5/mm2
margins deep and peripherial
Sept 2012 I had WLE and SLN …3 pulled from back side of neck all clear and 2 pulled from clavicle area all clear.
I immediately want some answers on my headaches eys etc. Basically it was said. your lymph nodes are clear and your MRI is negative so your multiple neurological conditions are independent of Melanoma.
I am still not sure I believe or agree but I try not to be crazy about it. I have symptoms of and diagnosis of:
Cluster headaches, Horner's Syndrome, Some sort of trigeminal Neuralgia with Hemi Facial Spasms
I take a blood pressure med as my Headache Preventative (after 3 or 4 other tries) this one atleast has limited side effects and there seems to be some connection with blood flow? air? oxygen? etc.
For treatment I am on Oxygen and if you dont get to it and get comfy and get 15 min on the bottle before the headache kicks then it doesn't do anything….even when it works it is short lived in "curbing the pain from the "most intense" to still really bad. I also have Narcotic pain meds and nasuea meds. moderately helpful but do help to try and relax me atleast for the aftermath of what usually turns into a long painful, anxiety ridden day.
I get my first session of "botox" from my Neuro surgeoon in 2 weeks. he said it may help the facial spasms, cranial dystonia and pssibly the headaches.
As far as melanoma….I feel like it is in there somewhere but since I was neg on SLB I do not get a melanoma spec just an oncologiat who takes blood and checks how I'm feeling every 90 days. My original Onc Surgeon does ultrasound of the WLE to check the size of the lymph nodes in the neck every 6 months.
So there are alot of similarities. By the way he may want sedation or meds for the MRI (I can't take it in there, it is just to much for me)
I don't know how to help but it is the first time i have ever come across anyone with similar conditions
M
-
- May 18, 2013 at 11:05 am
It was on the base of the neck, above the shoulder. He is under the care of melanoma specialists is original path report stated the following: Malignant Melanoma, Nodular, 2.5mm in thickness extending to the base of the biopsy with a separate portion of tissue showing a 2 mm thick portion of melanoma. Greater than 10 mitosis per millimeter squared. 3 mm of ulceration. Melanoma seen in vascular spaces. Clark level IV (deeper invasion cannot be excluded) No perineural invasion. Tumor infiltrating lymphocytes – non brisk. cautery effect. incompletely excised.
Seen by surgical oncologist and went in for a wide excision and sentinel node biopsy. 2 sentinel nodes were removed. Of the two, one showed metastatic malignant melanoma. Of the five supraclavicular nodes, none showed evidence. The path report also states that the largest focus of metastatic malignant melanoma measures approx 3mm in greatest dimension for the positive sentinel node. Lesional cells are present in the lymph node parenchyma and capsular sinus. No extracapsular extension is identified. An incidental predominantly intradermal melanocytic nevus is present in the excised site.
It just seems like an eternity when you are waiting for pending tests to be done….
-
- May 18, 2013 at 11:05 am
It was on the base of the neck, above the shoulder. He is under the care of melanoma specialists is original path report stated the following: Malignant Melanoma, Nodular, 2.5mm in thickness extending to the base of the biopsy with a separate portion of tissue showing a 2 mm thick portion of melanoma. Greater than 10 mitosis per millimeter squared. 3 mm of ulceration. Melanoma seen in vascular spaces. Clark level IV (deeper invasion cannot be excluded) No perineural invasion. Tumor infiltrating lymphocytes – non brisk. cautery effect. incompletely excised.
Seen by surgical oncologist and went in for a wide excision and sentinel node biopsy. 2 sentinel nodes were removed. Of the two, one showed metastatic malignant melanoma. Of the five supraclavicular nodes, none showed evidence. The path report also states that the largest focus of metastatic malignant melanoma measures approx 3mm in greatest dimension for the positive sentinel node. Lesional cells are present in the lymph node parenchyma and capsular sinus. No extracapsular extension is identified. An incidental predominantly intradermal melanocytic nevus is present in the excised site.
It just seems like an eternity when you are waiting for pending tests to be done….
-
- May 17, 2013 at 1:27 pm
Is he being seen by a melanoma specialist.
Where is the melanoma located and more specifics on it are needed before we can help you. The profile is not filled in with enough information. Do you have copies of the pathology, if so post it and maybe we can offer some suggestions.
-
- May 17, 2013 at 1:27 pm
Is he being seen by a melanoma specialist.
Where is the melanoma located and more specifics on it are needed before we can help you. The profile is not filled in with enough information. Do you have copies of the pathology, if so post it and maybe we can offer some suggestions.
-
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