POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: poobear on August 19, 2006, 01:00:49 am
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hi , I am a new member here. I have been reading a lot of the posts and think that everyone is sincere and support others, its a very nice thing to see. Anyway I have been HIV+ since 1994. I have had chronic daily headaches now for over 2 years. Have been to neurologist and headache clinic. They tell ME the headaches are idiopathic( no known cause) and I have been tried on many different medicines along with my cocktail ( norvir, reyataz, ziagen, and didodinase). With no long term help. My question is has anyone experienced headaches this often and if they know if it could be HIV related? I do know that they are not caused by HIV meds because I was on a med break about a year ago and the headaches started before that. I would also like to mention that I had a buffalo hump that was removed by liposuction about 3 years ago, I thought that the buffalo hump was pushing my head forward and that was causing the headaches. Please if anyone has any suggestions I would greatly appreciate it. I am a female and I had my hormones checked, eye exam, allergy testing, MRI's, CAT scans, and a spinal tap all negative. I am usually a very positive person but I have had the shits of these headaches. thanks again and I am glad I found this site.
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Hi Poobear, welcome to the forums.
I get headaches on a regular basis too and they can't figure mine out either. I've not had the scans or the spinal tap though - they've decided they weren't necessary. ~shrug~
I seem to get them in runs - right now I'm in the middle of one and it's lasted for three or four days now. I never go for more than five days or so without a headache. Sometimes they are migraine and I have a fair amount of success with a drug called sumatriptan - but it doesn't always work. I've been able to pretty much figure out which headaches the drug will work on and which would be a waste of the drug. Sometimes paracetamol works, sometimes doing some relaxation exercises works, but quite often, nothing gets rid of it completely. My headaches are often like an annoying noise in the background that I've learned to live with - I've had to. Other times they are what I call "cricket bat headaches" - where it feels like I'm being smacked in the back of the head with one every time I move too quickly. At times like those, anything above a snail's pace is too quickly. It's the worst!
Aside from asking your doctor if you can try some migraine meds, I don't really have any suggestions. Migraines aren't always the classical one side of the head affairs - mine tend to be right in the center of the back of my head, although sometimes I get them on the right side. As long as you don't have high blood pressure, the sumatriptan should be ok for you to try out. Even if you think you aren't suffering from migraine, give it a try, it just might help.
I hope you can find some relief soon - I know how soul-destroying constant head pain can be.
Ann
Oh, nearly forgot to say... I know mine aren't from the meds because I've never been on HAART. I too wonder if it isn't being caused by hiv running amok in my brain. It sure would be nice to have an answer to that one day!
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I was plagued with headaches and migrains since I was in my early teens, my mother never took me to get checked just handed me pills which was on for the normal headaches but a migrain tylenol is not gonna even touch. just a few months back I finally had a cat scan and nothing bad was found in my head and yes its finally confirmed I have a brain... ~giggle~
so many many meds later still nothing works 100% for me right now I am on a blood pressure med to help it does ok and I was told I am not supposed to have any break through pain well I do. even get migrains still and sometimes they last me 5 days, when I lived in Pa all I had to do is call the doctor and ask to come in for a shot and all was good 10 minutes later. here my first migrain I went to the emergency room because doctors office was closed, they put in an iv and was giving me fluids then the med for the migrain, they left me sitting for 2 hours without even a word they wanted to do a cat scan then but never came back for me, now this was late at night so how busy could they have been? no one was in the emergency room.. they came in to check on me and I told them I needed to go they left again so 1/2 hour later I could no longer stay there they walked past my room and ignored me I was in and out of the bed, sitting then standing and even tryed laying. I could not get comfortable I was going into a panic attack I had to get out before I couldn't breath, so I took out my own IV well except the needle, got dresses and left...the minute I walked out the door I felt relieved. once I was home I took the needle out of my arm wrapped it in card board and disposed of it. lol should have heard the phone call I had from hospital security~~acting like I was 5 years old and was a bad girl ~ dude even came to my house to check on me and make sure blood wasnt running down my arm, geesh ::) (not like its the first needle I had in my arm)
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Thank You Ann and babygirl for you response. Just kinda wanted to see if the headaches could be related to HIV. Thanks for info and wish the best to you both. Thanks again Rachel
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I think they can be related to hiv or the drugs becuase I know mine became worse then before and more frequent. but since they still do not know why I get them I have no clue.
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I had a friend who got what was diagnosed as "cluster headaches" which I think they figured was more related to a pre-existing bipolar situation rather than HIV