Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Sandy, Yes, as a matter of fact they are... They are right at my temples. However, my sed rate is always normal... What about you? I don't know that I have had blood work done when I had a bad headache though, so maybe that doesn't mean too much. I haven't ever lost vision, but sometimes it seems that my eyes are "wongy" for lack of a better word. They hurt and if I move them too fast I get dizzy. How did they diagnose the vasculitis? Was it through blood work? Do you get the scalp sores? My whole scalp aches too... Anyway, sorry for all the questions and thanks for the reply. Kathleen Re: Fw: RP/ /Carol G. Kathleen, Are the headaches in your temple and to they affect your jaw? I have been having these headaches for quite some time. I also get severe eye pain with mine. The last one I had resulted in the loss of the central vision of my right eye. My Rheumy is going to schedule a biopsy for me because he thinks I might have Temporal Arteritis. I also have Vasculitis. Sandy I also wonder if I don't have some degree of vasculitis, as I have terrible headaches (they feel sort of like my brain might short-circuit -- electrical in some weird way -- almost like a lowgrade hum...) neck pain, scalp tenderness and sores that appear on my scalp when everything is at its worst. :-( Didn't get my hair cut for the longest time until it cleared up... Anyway, these articles sort of freaked me out as they kept saying "fatal." Although I did see that there are two varieties, one not as bad. Since I have been bothered by this for over a year, maybe its the not-so-bad version, or maybe it's just TMJ. (fingers crossed!) Does anyone else relate to the weirdness of my headache description? My new rheumy did mention vasculitis in reference to the sores on my scalp, but she didn't seem overly worried... Kathleen (Tx) Roy got this message from our support site and I have never heard of this with RP. Can anyone help? If so, just answer here I will forward it to her. Thanks so much in advance, W size=2>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> size=2>In a message dated 3/2/02 7:07:51 AM Pacific Standard Time, Tutumambo writes: style="BORDER-LEFT: #0000ff 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT: 0px; PADDING-LEFT: 5px" TYPE="CITE">Hi! May name is . I've been diagnosed with RP since 93, though I had it for a long time before that. I am seeking some info on pressure on the head and neck related with RP. Has to do with circulation. Do you know anything or can you refer me to some article? Thanks. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Kathleen, My sed rates are always normal too. This is the first time I have lost vision for any length of time. Usually when I would get the headaches my vision would be kind of "wacky" for a few hours. I have skin Vasculitis, my Doc Dx it by symptoms and appearance.. Yes, I do get the tender spots on my scalp, hurts to even comb my hair. I only got sores on my scalp when I first started the Cytoxan. My eye sockets get so painful when I move my eyes. Does this happen to you? Sandy Sandy, Yes, as a matter of fact they are... They are right at my temples. However, my sed rate is always normal... What about you? I don't know that I have had blood work done when I had a bad headache though, so maybe that doesn't mean too much. I haven't ever lost vision, but sometimes it seems that my eyes are "wongy" for lack of a better word. They hurt and if I move them too fast I get dizzy. How did they diagnose the vasculitis? Was it through blood work? Do you get the scalp sores? My whole scalp aches too... Anyway, sorry for all the questions and thanks for the reply. Kathleen Re: Fw: RP/ /Carol G. Kathleen, Are the headaches in your temple and to they affect your jaw? I have been having these headaches for quite some time. I also get severe eye pain with mine. The last one I had resulted in the loss of the central vision of my right eye. My Rheumy is going to schedule a biopsy for me because he thinks I might have Temporal Arteritis. I also have Vasculitis. Sandy I also wonder if I don't have some degree of vasculitis, as I have terrible headaches (they feel sort of like my brain might short-circuit -- electrical in some weird way -- almost like a lowgrade hum...) neck pain, scalp tenderness and sores that appear on my scalp when everything is at its worst. :-( Didn't get my hair cut for the longest time until it cleared up... Anyway, these articles sort of freaked me out as they kept saying "fatal." Although I did see that there are two varieties, one not as bad. Since I have been bothered by this for over a year, maybe its the not-so-bad version, or maybe it's just TMJ. (fingers crossed!) Does anyone else relate to the weirdness of my headache description? My new rheumy did mention vasculitis in reference to the sores on my scalp, but she didn't seem overly worried... Kathleen (Tx) Roy got this message from our support site and I have never heard of this with RP. Can anyone help? If so, just answer here I will forward it to her. Thanks so much in advance, W size=2>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> size=2>In a message dated 3/2/02 7:07:51 AM Pacific Standard Time, Tutumambo writes: style="BORDER-LEFT: #0000ff 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT: 0px; PADDING-LEFT: 5px" TYPE="CITE">Hi! May name is . I've been diagnosed with RP since 93, though I had it for a long time before that. I am seeking some info on pressure on the head and neck related with RP. Has to do with circulation. Do you know anything or can you refer me to some article? Thanks. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Sandy, Yes, my eye sockets ache terribly with the headaches. So sorry that you have similar problems... When I take my pred in the morning (27.5 mg right now) it seems to really help. But by late afternoon, the %^$%^% headache is back with a vengence. Talked to my rheumy on the phone today and she said that the headaches are probably related somehow and that we will talk more about it at my next appt in April. Do you ever get dizzy or just feel very strange with the headaches? That's what scares me the most. Don't like feeling strange and out of it. :-( Well, thanks again. I am very sorry that you have similar problems, but it is good to know that I am not alone. Kathleen (Tx) Re: Fw: RP/ /Carol G. Kathleen, Are the headaches in your temple and to they affect your jaw? I have been having these headaches for quite some time. I also get severe eye pain with mine. The last one I had resulted in the loss of the central vision of my right eye. My Rheumy is going to schedule a biopsy for me because he thinks I might have Temporal Arteritis. I also have Vasculitis. Sandy I also wonder if I don't have some degree of vasculitis, as I have terrible headaches (they feel sort of like my brain might short-circuit -- electrical in some weird way -- almost like a lowgrade hum...) neck pain, scalp tenderness and sores that appear on my scalp when everything is at its worst. :-( Didn't get my hair cut for the longest time until it cleared up... Anyway, these articles sort of freaked me out as they kept saying "fatal." Although I did see that there are two varieties, one not as bad. Since I have been bothered by this for over a year, maybe its the not-so-bad version, or maybe it's just TMJ. (fingers crossed!) Does anyone else relate to the weirdness of my headache description? My new rheumy did mention vasculitis in reference to the sores on my scalp, but she didn't seem overly worried... Kathleen (Tx) Roy got this message from our support site and I have never heard of this with RP. Can anyone help? If so, just answer here I will forward it to her. Thanks so much in advance, W size=2>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> size=2>In a message dated 3/2/02 7:07:51 AM Pacific Standard Time, Tutumambo writes: style="BORDER-LEFT: #0000ff 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT: 0px; PADDING-LEFT: 5px" TYPE="CITE">Hi! May name is . I've been diagnosed with RP since 93, though I had it for a long time before that. I am seeking some info on pressure on the head and neck related with RP. Has to do with circulation. Do you know anything or can you refer me to some article? Thanks. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Kathleen, Yes, I do have a problem with dizziness. Also get a "spacey" feeling at times. Sorry to hear you are going through this too. I know how miserable you must feel at times. Hugs, Sandy Sandy, Yes, my eye sockets ache terribly with the headaches. So sorry that you have similar problems... When I take my pred in the morning (27.5 mg right now) it seems to really help. But by late afternoon, the %^$%^% headache is back with a vengence. Talked to my rheumy on the phone today and she said that the headaches are probably related somehow and that we will talk more about it at my next appt in April. Do you ever get dizzy or just feel very strange with the headaches? That's what scares me the most. Don't like feeling strange and out of it. :-( Well, thanks again. I am very sorry that you have similar problems, but it is good to know that I am not alone. Kathleen (Tx) Re: Fw: RP/ /Carol G. Kathleen, Are the headaches in your temple and to they affect your jaw? I have been having these headaches for quite some time. I also get severe eye pain with mine. The last one I had resulted in the loss of the central vision of my right eye. My Rheumy is going to schedule a biopsy for me because he thinks I might have Temporal Arteritis. I also have Vasculitis. Sandy I also wonder if I don't have some degree of vasculitis, as I have terrible headaches (they feel sort of like my brain might short-circuit -- electrical in some weird way -- almost like a lowgrade hum...) neck pain, scalp tenderness and sores that appear on my scalp when everything is at its worst. :-( Didn't get my hair cut for the longest time until it cleared up... Anyway, these articles sort of freaked me out as they kept saying "fatal." Although I did see that there are two varieties, one not as bad. Since I have been bothered by this for over a year, maybe its the not-so-bad version, or maybe it's just TMJ. (fingers crossed!) Does anyone else relate to the weirdness of my headache description? My new rheumy did mention vasculitis in reference to the sores on my scalp, but she didn't seem overly worried... Kathleen (Tx) Roy got this message from our support site and I have never heard of this with RP. Can anyone help? If so, just answer here I will forward it to her. Thanks so much in advance, W size=2>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> size=2>In a message dated 3/2/02 7:07:51 AM Pacific Standard Time, Tutumambo writes: style="BORDER-LEFT: #0000ff 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT: 0px; PADDING-LEFT: 5px" TYPE="CITE">Hi! May name is . I've been diagnosed with RP since 93, though I had it for a long time before that. I am seeking some info on pressure on the head and neck related with RP. Has to do with circulation. Do you know anything or can you refer me to some article? Thanks. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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