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What Minocycline Did To Me.

minocycline iih pseudotumor cerebrii side affects complications vitamin a

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#1 twizzlercakes

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Posted 10 December 2012 - 02:35 PM

Okay, here goes:

Everything started almost a year ago. Just after christmas and new years' day. Lovely way to start 2012, now that I think about it.
It was about two weeks before christmas, give or take a little. I had (still have) moderate acne that was just ugly and irritating and I figured the dermatologist might be able to help. Went to the office, it was this really nice woman who said my acne was bad enough to take a prescription pill for it. She told me minocycline was a good pill to take, and prescribed it twice daily. I was so happy. Could this possibly be the solution to my hideous skin? I prayed it would be.

Christmas rolls around. Gifts are exchanged, my skin even cleared up a little already. Wonderful! New years' comes by, celebrating the 2012. I go back to school, life starts again. About two weeks into January I begin to get headaches. Strange, considering I never get headaches for any reason, but nothing to be concerned about. Over the course of a week, they get worse. Still, not completely unbearable. Monday morning, I wake up for school. Eventually, I notice I'm seeing two of everything. We think maybe this double vision is just me needing glasses or something, considering my dad had bad vision as well. Maybe my eyes were just misaligned, I had looked it up and that is a possibility. I began to look at things through the corner of my eye so I could see just 1 image. Headaches worsened. That sunday, we decided to go to our walk-in clinic and get it checked out. She sent us to get an MRI, it came back OK. No tumors or anything awful. They directed us to an opthamologist, and that tuesday we saw them. She ran tests (visual field [peripheral vision test], dilated my eyes and looked in the back of them) but no one told us anything yet. Opthamology told us to go to a neurologist, and we saw him that friday. It was then that someone finally told us what was going on, and what I had.

Pseudotumor cerebrii. Also known as Idiopathic Intercranial Hypertension (IIH). He sent us in for an emergency spinal tap that night. My mother just started crying, but I couldn't seem to feel like anything. I couldn't figure out how, what or why this was happening. When they measured my spinal fluid pressure, it came back as OVER 55. It went to the top of the tube and spilled over, indicating it would have gone higher. The average person's pressure is between 15-20.

For those who don't know, Idiopathic Intercranial Hypertension is what happens when there's too much spinal fluid in your head. In my case, it put pressure on my optic nerve. If I had not gone to the doctor, my neurologist said, I would have been blind in a short amount of time. They don't know exactly why this happens. All the cases they have support a few different ideas: Overweight people, adolescents, women, and high doses of Vitamin A. I'm not overweight, I am an adolescent woman, but I've been an adolescent woman for quite some time now. The only NEW factor was the minocycline, or high dose of vitamin A.

For the next 6 1/2 months, I had regularly (and often) scheduled appointments with both the opthamologist and neurologist, along with 5 more spinal taps. Although I had stopped the medication immediately, my spinal fluid pressure always seemed to crawl back up. In august, my neurologist had had enough. He reccomended us to a neurosurgeon. In our consultation, he decided we should get a ventricular-atrial shunt. Simply put, he wanted to put a tube from my ventricles (inside my brain where fluid is produced), out to beneath my skin where a valve would automatically drain it once it got to a certain pressure through a cable that connected to my facial vein and into the right atrium of my heart, where it would re-absorb. Oh, and guess what? He had to shave half my head. Not even the side I didn't like. Great. Went into surgery, got kicked out after 1 night was given only mild pain meds and sent home.

Now time for school. At this point, I hadn't cut the other side of my head a bit shorter (it was way past my chest and I cut it to a couple inches long), and I had to face everyone at school, where only about 4 people know I had surgery. I couldn't even blink without getting wide-eyed stares for the first whole week, and the looks trailed on long after that. Being a freshman in highschool, of course people were going to gossip about me. One of the things that was relayed back to me was, "oh my gosh does she realize how stupid she looks? why would she do that? gross." Real confidence-booster, right?

In short, don't take minocycline, kids. It has worked for some people, but honestly, that ^ stuff was not worth a couple pimples. I would much rather not know what headaches truly are, have all my hair still, and not have all the ridicule and pity people have given me. Thanks.

#2 whoartthou1

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Posted 15 December 2012 - 03:42 AM

how long were you on minocycline for?

I believe antibiotics are the worst medicine that can be prescribed for people... worse than accutane

#3 anb1998

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Posted 18 December 2012 - 08:46 AM

Okay, here goes:

Everything started almost a year ago. Just after christmas and new years' day. Lovely way to start 2012, now that I think about it.
It was about two weeks before christmas, give or take a little. I had (still have) moderate acne that was just ugly and irritating and I figured the dermatologist might be able to help. Went to the office, it was this really nice woman who said my acne was bad enough to take a prescription pill for it. She told me minocycline was a good pill to take, and prescribed it twice daily. I was so happy. Could this possibly be the solution to my hideous skin? I prayed it would be.

Christmas rolls around. Gifts are exchanged, my skin even cleared up a little already. Wonderful! New years' comes by, celebrating the 2012. I go back to school, life starts again. About two weeks into January I begin to get headaches. Strange, considering I never get headaches for any reason, but nothing to be concerned about. Over the course of a week, they get worse. Still, not completely unbearable. Monday morning, I wake up for school. Eventually, I notice I'm seeing two of everything. We think maybe this double vision is just me needing glasses or something, considering my dad had bad vision as well. Maybe my eyes were just misaligned, I had looked it up and that is a possibility. I began to look at things through the corner of my eye so I could see just 1 image. Headaches worsened. That sunday, we decided to go to our walk-in clinic and get it checked out. She sent us to get an MRI, it came back OK. No tumors or anything awful. They directed us to an opthamologist, and that tuesday we saw them. She ran tests (visual field [peripheral vision test], dilated my eyes and looked in the back of them) but no one told us anything yet. Opthamology told us to go to a neurologist, and we saw him that friday. It was then that someone finally told us what was going on, and what I had.

Pseudotumor cerebrii. Also known as Idiopathic Intercranial Hypertension (IIH). He sent us in for an emergency spinal tap that night. My mother just started crying, but I couldn't seem to feel like anything. I couldn't figure out how, what or why this was happening. When they measured my spinal fluid pressure, it came back as OVER 55. It went to the top of the tube and spilled over, indicating it would have gone higher. The average person's pressure is between 15-20.

For those who don't know, Idiopathic Intercranial Hypertension is what happens when there's too much spinal fluid in your head. In my case, it put pressure on my optic nerve. If I had not gone to the doctor, my neurologist said, I would have been blind in a short amount of time. They don't know exactly why this happens. All the cases they have support a few different ideas: Overweight people, adolescents, women, and high doses of Vitamin A. I'm not overweight, I am an adolescent woman, but I've been an adolescent woman for quite some time now. The only NEW factor was the minocycline, or high dose of vitamin A.

For the next 6 1/2 months, I had regularly (and often) scheduled appointments with both the opthamologist and neurologist, along with 5 more spinal taps. Although I had stopped the medication immediately, my spinal fluid pressure always seemed to crawl back up. In august, my neurologist had had enough. He reccomended us to a neurosurgeon. In our consultation, he decided we should get a ventricular-atrial shunt. Simply put, he wanted to put a tube from my ventricles (inside my brain where fluid is produced), out to beneath my skin where a valve would automatically drain it once it got to a certain pressure through a cable that connected to my facial vein and into the right atrium of my heart, where it would re-absorb. Oh, and guess what? He had to shave half my head. Not even the side I didn't like. Great. Went into surgery, got kicked out after 1 night was given only mild pain meds and sent home.

Now time for school. At this point, I hadn't cut the other side of my head a bit shorter (it was way past my chest and I cut it to a couple inches long), and I had to face everyone at school, where only about 4 people know I had surgery. I couldn't even blink without getting wide-eyed stares for the first whole week, and the looks trailed on long after that. Being a freshman in highschool, of course people were going to gossip about me. One of the things that was relayed back to me was, "oh my gosh does she realize how stupid she looks? why would she do that? gross." Real confidence-booster, right?

In short, don't take minocycline, kids. It has worked for some people, but honestly, that ^ stuff was not worth a couple pimples. I would much rather not know what headaches truly are, have all my hair still, and not have all the ridicule and pity people have given me. Thanks.

Okay, here goes:

Everything started almost a year ago. Just after christmas and new years' day. Lovely way to start 2012, now that I think about it.
It was about two weeks before christmas, give or take a little. I had (still have) moderate acne that was just ugly and irritating and I figured the dermatologist might be able to help. Went to the office, it was this really nice woman who said my acne was bad enough to take a prescription pill for it. She told me minocycline was a good pill to take, and prescribed it twice daily. I was so happy. Could this possibly be the solution to my hideous skin? I prayed it would be.

Christmas rolls around. Gifts are exchanged, my skin even cleared up a little already. Wonderful! New years' comes by, celebrating the 2012. I go back to school, life starts again. About two weeks into January I begin to get headaches. Strange, considering I never get headaches for any reason, but nothing to be concerned about. Over the course of a week, they get worse. Still, not completely unbearable. Monday morning, I wake up for school. Eventually, I notice I'm seeing two of everything. We think maybe this double vision is just me needing glasses or something, considering my dad had bad vision as well. Maybe my eyes were just misaligned, I had looked it up and that is a possibility. I began to look at things through the corner of my eye so I could see just 1 image. Headaches worsened. That sunday, we decided to go to our walk-in clinic and get it checked out. She sent us to get an MRI, it came back OK. No tumors or anything awful. They directed us to an opthamologist, and that tuesday we saw them. She ran tests (visual field [peripheral vision test], dilated my eyes and looked in the back of them) but no one told us anything yet. Opthamology told us to go to a neurologist, and we saw him that friday. It was then that someone finally told us what was going on, and what I had.

Pseudotumor cerebrii. Also known as Idiopathic Intercranial Hypertension (IIH). He sent us in for an emergency spinal tap that night. My mother just started crying, but I couldn't seem to feel like anything. I couldn't figure out how, what or why this was happening. When they measured my spinal fluid pressure, it came back as OVER 55. It went to the top of the tube and spilled over, indicating it would have gone higher. The average person's pressure is between 15-20.

For those who don't know, Idiopathic Intercranial Hypertension is what happens when there's too much spinal fluid in your head. In my case, it put pressure on my optic nerve. If I had not gone to the doctor, my neurologist said, I would have been blind in a short amount of time. They don't know exactly why this happens. All the cases they have support a few different ideas: Overweight people, adolescents, women, and high doses of Vitamin A. I'm not overweight, I am an adolescent woman, but I've been an adolescent woman for quite some time now. The only NEW factor was the minocycline, or high dose of vitamin A.

For the next 6 1/2 months, I had regularly (and often) scheduled appointments with both the opthamologist and neurologist, along with 5 more spinal taps. Although I had stopped the medication immediately, my spinal fluid pressure always seemed to crawl back up. In august, my neurologist had had enough. He reccomended us to a neurosurgeon. In our consultation, he decided we should get a ventricular-atrial shunt. Simply put, he wanted to put a tube from my ventricles (inside my brain where fluid is produced), out to beneath my skin where a valve would automatically drain it once it got to a certain pressure through a cable that connected to my facial vein and into the right atrium of my heart, where it would re-absorb. Oh, and guess what? He had to shave half my head. Not even the side I didn't like. Great. Went into surgery, got kicked out after 1 night was given only mild pain meds and sent home.

Now time for school. At this point, I hadn't cut the other side of my head a bit shorter (it was way past my chest and I cut it to a couple inches long), and I had to face everyone at school, where only about 4 people know I had surgery. I couldn't even blink without getting wide-eyed stares for the first whole week, and the looks trailed on long after that. Being a freshman in highschool, of course people were going to gossip about me. One of the things that was relayed back to me was, "oh my gosh does she realize how stupid she looks? why would she do that? gross." Real confidence-booster, right?

In short, don't take minocycline, kids. It has worked for some people, but honestly, that ^ stuff was not worth a couple pimples. I would much rather not know what headaches truly are, have all my hair still, and not have all the ridicule and pity people have given me. Thanks.

I'm taking minocyclien but I'm only on it for 16 days, Is it just me or does it taske really bad?

#4 Charles23

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Posted 30 December 2012 - 09:21 PM

Okay, here goes:

Everything started almost a year ago. Just after christmas and new years' day. Lovely way to start 2012, now that I think about it.
It was about two weeks before christmas, give or take a little. I had (still have) moderate acne that was just ugly and irritating and I figured the dermatologist might be able to help. Went to the office, it was this really nice woman who said my acne was bad enough to take a prescription pill for it. She told me minocycline was a good pill to take, and prescribed it twice daily. I was so happy. Could this possibly be the solution to my hideous skin? I prayed it would be.

Christmas rolls around. Gifts are exchanged, my skin even cleared up a little already. Wonderful! New years' comes by, celebrating the 2012. I go back to school, life starts again. About two weeks into January I begin to get headaches. Strange, considering I never get headaches for any reason, but nothing to be concerned about. Over the course of a week, they get worse. Still, not completely unbearable. Monday morning, I wake up for school. Eventually, I notice I'm seeing two of everything. We think maybe this double vision is just me needing glasses or something, considering my dad had bad vision as well. Maybe my eyes were just misaligned, I had looked it up and that is a possibility. I began to look at things through the corner of my eye so I could see just 1 image. Headaches worsened. That sunday, we decided to go to our walk-in clinic and get it checked out. She sent us to get an MRI, it came back OK. No tumors or anything awful. They directed us to an opthamologist, and that tuesday we saw them. She ran tests (visual field [peripheral vision test], dilated my eyes and looked in the back of them) but no one told us anything yet. Opthamology told us to go to a neurologist, and we saw him that friday. It was then that someone finally told us what was going on, and what I had.

Pseudotumor cerebrii. Also known as Idiopathic Intercranial Hypertension (IIH). He sent us in for an emergency spinal tap that night. My mother just started crying, but I couldn't seem to feel like anything. I couldn't figure out how, what or why this was happening. When they measured my spinal fluid pressure, it came back as OVER 55. It went to the top of the tube and spilled over, indicating it would have gone higher. The average person's pressure is between 15-20.

For those who don't know, Idiopathic Intercranial Hypertension is what happens when there's too much spinal fluid in your head. In my case, it put pressure on my optic nerve. If I had not gone to the doctor, my neurologist said, I would have been blind in a short amount of time. They don't know exactly why this happens. All the cases they have support a few different ideas: Overweight people, adolescents, women, and high doses of Vitamin A. I'm not overweight, I am an adolescent woman, but I've been an adolescent woman for quite some time now. The only NEW factor was the minocycline, or high dose of vitamin A.

For the next 6 1/2 months, I had regularly (and often) scheduled appointments with both the opthamologist and neurologist, along with 5 more spinal taps. Although I had stopped the medication immediately, my spinal fluid pressure always seemed to crawl back up. In august, my neurologist had had enough. He reccomended us to a neurosurgeon. In our consultation, he decided we should get a ventricular-atrial shunt. Simply put, he wanted to put a tube from my ventricles (inside my brain where fluid is produced), out to beneath my skin where a valve would automatically drain it once it got to a certain pressure through a cable that connected to my facial vein and into the right atrium of my heart, where it would re-absorb. Oh, and guess what? He had to shave half my head. Not even the side I didn't like. Great. Went into surgery, got kicked out after 1 night was given only mild pain meds and sent home.

Now time for school. At this point, I hadn't cut the other side of my head a bit shorter (it was way past my chest and I cut it to a couple inches long), and I had to face everyone at school, where only about 4 people know I had surgery. I couldn't even blink without getting wide-eyed stares for the first whole week, and the looks trailed on long after that. Being a freshman in highschool, of course people were going to gossip about me. One of the things that was relayed back to me was, "oh my gosh does she realize how stupid she looks? why would she do that? gross." Real confidence-booster, right?

In short, don't take minocycline, kids. It has worked for some people, but honestly, that ^ stuff was not worth a couple pimples. I would much rather not know what headaches truly are, have all my hair still, and not have all the ridicule and pity people have given me. Thanks.

o

omg i just want to hug you! minocycline hurt me too but not even close to this! this teaches me not to judge people, omg! you are strong and very brave to share your story. i will pray for you and just hope you get better.

#5 User34781256

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Posted 30 April 2014 - 10:22 PM

i am currently fighting off my own minocycline allergic reaction and found this post in researching my own symptoms. I just wanted to provide information for others for future reactions.

I started mino on a friday- two pills per day for 30 days was the plan. I was to use mino to clear up hormonal chin acne that just wouldn't go away. I was on mino for just over a week- on sunday morning, day 9 i woke up around 6 am took my morning pill and decided to go back to bed for a bit longer. Around 10 i woke up with itchy hands and arms. I quickly showered thinking maybe i had been bit by something or had a reaction to a lotion i used the day before. Within minutes of my shower i began seeing tons of red and skin colored bumps on my stomach, hands and ankles.

By noon i was literally scratching holes in my legs and hands- the itching was like nothing i had ever experienced- more than i could handle. I decided to swing by a local cvs just 3 or 4 miles from my home. Once i got to cvs i was so uncountable i actually RAN into the store and up to an nurse in the "minute clinic" she took one look at me and just said "you need to go to urgent care." I assumed she was overreacting so went to the back of the store looking for Benadryl and an anti-itch cream. A pharmacist noticed me frantically scratching my now bright red legs and told me to get to urgent care asap.

I bought and took a Benadryl and drove a mile to urgent care. Once inside the receptionist glanced st me and ran back to a nurse and yelled out "we have an allergic reaction here!" The nurse quickly brought me back to a room- the doctor came in- asked what meds i had been taking. I only had the mino and the one Benadryl just moments earlier- he said without a doubt i was having a reaction to the mino. They gave me 60 mg of prednisone and two aterax pills. He sent me home with a prescription for one more day worth of prendisone and said to go sleep it off with the Benadryl. By the time i left urgent care, only about three hours after first noticing the itching i was covered head to toe in welts and hives. They were in my hair, face, arms, stomach, back, butt, legs, ankles, fingers and toes- i was BRIGHT red.

Once home i slept much of the day and went to bed for the night around 6, only to wake up every few hours to scratch the crap out of my legs and take more Benadryl. By monday morning i was extremely uncomfortable. The hives were everywhere and now my eyes were nearly swollen shut, plus my ears were huge and really painful. I stayed home from work thinking the second dose of prendisone later that day would clear me up.. It did not. I did start to feel a little better and thought maybe i was in the clear. I was wrong. By 9 pm monday night my hives were eating me alive. My hands, wrists, ears and eyes were all bright red and extremely swollen. My throat began to feel closed off- i couldn't get relief from Benadryl or anything else. Without a doubt that was the most pain i had ever been in. By 1 am i had to call for help. My boyfriend picked me up and brought me to the ER. I was immediately taken to a room and given an epi-pen shot, 60 mg of prendisone and aterax. My throat cleared up and eye swelling went down a lot. After a bit the itching got less intense though the hives were still bright colored, puffy and sore. I was sent home by 5 am and in bed a half hour later. The ER sent me home with three days worth of prednisone, aterax, Zantac, two more epi pens (in case) and a prescription for a medrol pack if needed after the prednisone was done.

I woke up about two hours later- hoping to go to work for at least a half day. My skin was raw and reallllly sore. Wrists, hands and ears still very swollen but i was able to get myself to work though very uncomfortable. I used ice packs throughout the day on my hands and writs and took an aveno oatmeal bath in room temp water when i got home. I am now on day 4- most swelling is gone and hives are roughly 80% gone. I am noticing my chest and lungs have hurt throughout the day but its nothing compared to the pain in the days before. I truly believe it was the epi pen that did the most good for me.

My suggestions if you are experiencing a mino reaction- stop taking it asap and throw that shit away. Go in to a doctor for prednisone and aterax (which i found to work better than Benadryl). Also, stay away from anything hot- no hot showers, baths, food, rooms, blankets- heat did nothing but make the hives worse. Lastly, water. Drink water like its going out of style.

#6 User34781256

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Posted 30 April 2014 - 10:33 PM

i am currently fighting off my own minocycline allergic reaction and found this post in researching my own symptoms. I just wanted to provide information for others for future reactions.

I started mino on a friday- two pills per day for 30 days was the plan. I was to use mino to clear up hormonal chin acne that just wouldn't go away. I was on mino for just over a week- on sunday morning, day 9 i woke up around 6 am took my morning pill and decided to go back to bed for a bit longer. Around 10 i woke up with itchy hands and arms. I quickly showered thinking maybe i had been bit by something or had a reaction to a lotion i used the day before. Within minutes of my shower i began seeing tons of red and skin colored bumps on my stomach, hands and ankles.

By noon i was literally scratching holes in my legs and hands- the itching was like nothing i had ever experienced- more than i could handle. I decided to swing by a local cvs just 3 or 4 miles from my home. Once i got to cvs i was so uncountable i actually RAN into the store and up to an nurse in the "minute clinic" she took one look at me and just said "you need to go to urgent care." I assumed she was overreacting so went to the back of the store looking for Benadryl and an anti-itch cream. A pharmacist noticed me frantically scratching my now bright red legs and told me to get to urgent care asap.

I bought and took a Benadryl and drove a mile to urgent care. Once inside the receptionist glanced st me and ran back to a nurse and yelled out "we have an allergic reaction here!" The nurse quickly brought me back to a room- the doctor came in- asked what meds i had been taking. I only had the mino and the one Benadryl just moments earlier- he said without a doubt i was having a reaction to the mino. They gave me 60 mg of prednisone and two aterax pills. He sent me home with a prescription for one more day worth of prendisone and said to go sleep it off with the Benadryl. By the time i left urgent care, only about three hours after first noticing the itching i was covered head to toe in welts and hives. They were in my hair, face, arms, stomach, back, butt, legs, ankles, fingers and toes- i was BRIGHT red.

Once home i slept much of the day and went to bed for the night around 6, only to wake up every few hours to scratch the crap out of my legs and take more Benadryl. By monday morning i was extremely uncomfortable. The hives were everywhere and now my eyes were nearly swollen shut, plus my ears were huge and really painful. I stayed home from work thinking the second dose of prendisone later that day would clear me up.. It did not. I did start to feel a little better and thought maybe i was in the clear. I was wrong. By 9 pm monday night my hives were eating me alive. My hands, wrists, ears and eyes were all bright red and extremely swollen. My throat began to feel closed off- i couldn't get relief from Benadryl or anything else. Without a doubt that was the most pain i had ever been in. By 1 am i had to call for help. My boyfriend picked me up and brought me to the ER. I was immediately taken to a room and given an epi-pen shot, 60 mg of prendisone and aterax. My throat cleared up and eye swelling went down a lot. After a bit the itching got less intense though the hives were still bright colored, puffy and sore. I was sent home by 5 am and in bed a half hour later. The ER sent me home with three days worth of prednisone, aterax, Zantac, two more epi pens (in case) and a prescription for a medrol pack if needed after the prednisone was done.

I woke up about two hours later- hoping to go to work for at least a half day. My skin was raw and reallllly sore. Wrists, hands and ears still very swollen but i was able to get myself to work though very uncomfortable. I used ice packs throughout the day on my hands and writs and took an aveno oatmeal bath in room temp water when i got home. I am now on day 4- most swelling is gone and hives are roughly 80% gone. I am noticing my chest and lungs have hurt throughout the day but its nothing compared to the pain in the days before. I truly believe it was the epi pen that did the most good for me.

My suggestions if you are experiencing a mino reaction- stop taking it asap and throw that shit away. Go in to a doctor for prednisone and aterax (which i found to work better than Benadryl). Also, stay away from anything hot- no hot showers, baths, food, rooms, blankets- heat did nothing but make the hives worse. Lastly, water. Drink water like its going out of style.


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