32 replies to this topic

[xBreannex]

I see a lot of people wanting to try out Minocycline, and of course, your dermatologist will tell you the typical side-effects - dizziness, sensitive to sunlight, etc.
But what really is unfortunate is that they don't typically warn you about the serious side effects, which, unfortunately for myself, I am currently experiencing.

In case you're wondering, I have moderate acne and have been on Minocycline in combination with Spironolactone for about a year. I also had some creams, but I only used them for spots and they're not important to my overall story anyway.

Symptoms and Time Frame

About 2 months ago, maybe a little more, I began to experience severe headaches. They weren't constant, but it felt like I was getting them every day - right before I went to bed and right when I woke up. I thought maybe it was stress with it being finals week and I was just grinding my teeth at night. I shrugged it off for the time being. They went away, but started coming back a few weeks later. My mom thought it had to do with my teeth as well, so she bought me a mouth guard to wear at night. Unfortunately, it didn't help. The headaches eventually became constant.

About a month ago now, I started getting back pain. I thought maybe it was because I was sleeping over at a bunch of different houses so I was just uncomfortable with the bed situation, so again I ignored it. When I slept at my house, I still had the back pain and I was confused as to why it was still happening. My mom and I went out and bought a new pillow and mattress pad (my bed was hard as a rock anyhow), but as you can guess, the pain was still there.

At the same time, I had this weird ringing noise in my right ear. Not exactly ringing, I suppose, but I could definitely hear my heartbeat constantly in my ear. It made sleeping very difficult because all I could hear was this noise. It was awful.

I hadn't visited the doctor by this point in time. I thought all the symptoms were separate and didn't think much of anything.

Finally, I began to have vision problems not 3 weeks ago. I kept blacking out for anywhere from 1 to 10 seconds at a time whenever I stood up. Sometimes it would cover my entire vision to the point of not being able to see to just the outer edges. It was kind of like when you stand up too fast and you get that light-headed feeling, sometimes coupled with vision impairment? Yeah, like that.

I also felt disoriented at times and was having trouble thinking and spelling. I couldn't even spell "writing" and I'm 19 years old.

Doctors' Appointments & Diagnosis

The vision problems were the last straw, so I called up my family doctor. He saw me right away on Wednesday two weeks ago, although he couldn't conclude much. The only thing he noted along with my symptoms above was that my optic nerves were swollen. He recommended me to an ophthalmologist (eye doctor).

Nothing much different to say at the ophthalmologist I saw on Friday two weeks ago. He dilated my pupils and also recognized the optic nerve swelling. He told me to make a follow-up appointment in the coming weeks and I went home.

I got a call from my family doctor that night at home. He had been speaking with a neurologist about my symptoms and medications (obviously Minocycline was included in that list), and although it's hard to diagnose, they both decided that I had the following:

Idiomatic Intracranial Hypertension (IIH)/Pseudo Tumor Cerebri (PTC)
http://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertension

What this is in a nutshell is a neurological disorder in which a patient experiences similar symptoms a person with a brain tumor would feel (hence "pseudo tumor"). All of my symptoms from above are what characterizes this disorder, along with nausea (although I never experienced this). It basically involves increased pressure in the brain from an increased produced of spinal fluids.

Papilledema
http://en.wikipedia.org/wiki/Papilledema

This is one of the most obvious physical symptoms of IIH/PTC. It entails swelling of the optic disc caused by increased brain pressure. So they go hand in hand.

Mind you, these are both very rare, which is why the doctors had a hard time deciding if I should be diagnosed or not. But all signs pointed directly to this. I took it upon myself earlier that week to research my symptoms and a lot of the articles I read pointed to IIH. It typically occurs in obese people (which I am not), but the articles all said that studies have found a link between Minocycline and IIH. It's very rare that this happens, but it does all the same, which is why I wanted you guys to know about this. It's frightening knowing that a simple pill used to treat acne could lead to this. I'm not doing this to gain sympathy or anything. I thought I would go blind. I was truly scared for my life and I don't want anyone else to feel so lost or confused as I was.

If you want to know the personal hell I experienced because of this drug, please read on.

Treatments

MRI
After this phone call, I had an emergency MRI scheduled that Saturday night. This obviously involves no pain and I just had to sit in a small, enclosed space for an hour listening to sounds similar to a school fire alarm. Exciting, I know. But this was to confirm that I did not have a brain tumor and would be safe for me to have the next leg of my treatment...

Lumbar Puncture/Spinal Tap
http://en.wikipedia.org/wiki/Lumbar_puncture
I had this last Monday and it is something I NEVER wish to experience in my life.
I won't go into details in case some people are squeamish/afraid of needles. Let's just say I was crying my eyes out during the entire procedure because I was frightened and the initial pain was terrible.
This was suppose to take out excess spinal fluid in my spine. This, in combination with another medication I was taking - Diamox - I should have begun to feel better in a few days time.

Blood Patch
You can look this up on google for the same reason as the spinal tap.
But I guess the spinal tap didn't heal properly and I had a CSI (spinal fluid) leak internally causing the same severe headaches I had prior, as well as nausea.
I had this this morning and like the spinal tap, I never want this again either. Maybe I'm just a wuss. But I feel loads better aside from a little back pain.
...


All in all, was all this worth nice skin? NO WAY. I'm sorry for the terribly long post, but there was a lot to say. I've been stuck in my house for 3 weeks trying to recoup all because of Minocycline's side effects and I still cannot believe all this was caused by that little pill. I want everyone to know that there are always risks in taking these sort of medications and you need to look out for yourselves and be careful.

Feel free to ask questions if you have any, by the way.

[paul_huile]

wow sorry to hear whats happened to you..and here i wanted to try Minocycline ...i guess ill look and do some reasearch on here for some other antibiotic

thanks for the heads up !

[xBreannex]

Yeah, no problem! But as I said, I am a very rare case (there are only 12,000 documented cases of IIH in the USA), but I want people to be aware that there are always complications.

I'm just waiting to get better now before school starts up again, ugh.

[-_-Andrew-_-]

Just wondering. I've been on Tetracycline for about a year. I'm athletic and in pretty good condition in terms of my cardiovascular system. For the past couple of months I've been experiencing at least a few of those symptoms. Does anyone know if Tetracycline can do the same thing?

[xBreannex]

Which symptoms are you experiencing? How often and how severe?
Because yes, the entire tetracycline family (http://en.wikipedia....line_antibiotic) can lead to IIH and/or Papilledema.

IIH affects all shapes and sizes (and although 90% of patients are obese and women) so I would say go see your doctor with your concerns right away.

[-_-Andrew-_-]

Thanks I'll talk to my doctor about this the next time I go in, which is this week.

[Coco1019]

Breanne,

I decided to come over to the forums after just writing a review for Minocycline. I wanted to post a warning to others who may be on it as well.

I also developed IIH and am now partially blind in my left eye due to the fluid in my head putting pressure on my optic nerves. I had severe headaches (that felt like migraines, but worse) and other symptoms (heartbeat in my ears, seeing stars, back/neck pain, etc) for about a year. It wasn't until I started having double vision that they were able to diagnose me. I had talked to my dermatologist and my primary care doctor loads before one ER doctor finally saw the papilledema. He immediately called a neurosurgeon in who did a lumbar puncture and found out my pressure was in the 40s. Unfortunately, it wasn't caught in time, and I do have vision loss.

It has been a very long, painful and frustrating road. I know exactly what you are going through. I have been diagnosed for about 8 months now and the Diamox is no longer working. They will probably have to put in a shunt, which I am trying to avoid at all costs.

Just know you aren't the only one out there!

To everyone else - PLEASE...talk to your doctor if you have these types of symptoms. Some people are lucky enough to have their IIH go away when they discontinue Minocycline, I wasn't one of them.

[TheChangingman]

How rare is this? I've been on mino for a year or so and dont think I have any symptoms like this though as usually happens when I read about scary symptoms I start to think I might have them.

[Coco1019]

How rare is this? I've been on mino for a year or so and dont think I have any symptoms like this though as usually happens when I read about scary symptoms I start to think I might have them.

I've seen different stats. It just depends on where you look, but all of them do say that it is pretty rare. The Office of Rare Diseases of the National Institutes of Health say that it affects less than 200,000 of the total US population. However, I have also read on the Intracranial Hypertension Research Foundation's website that the incidence of chronic idiopathic intracranial hypertension for the general population is approximately 1 in 100,000. Then there is my neurosurgeon who supports Breanne's stat of 12,000 documented cases.

So...perfectly muddy?

If you are interested in more, here is a Google search for . Lots and lots to read.

[Coco1019]

Nevermind, I can't put a link for some reason. Anyway, just go to Google.

[TheChangingman]

I've googled, had a look round and Im still confused However I am aware of these symptoms now, so if I do get severe headaches and back problems Ill know not to just shrug it off. The headaches are supposed to be similar to migraines but never having had one of those I could only guess that I will know the pain to be different from regular headcold aches and pains.

This is a tres useful thread, I think perhaps some of this should be incorporated into the tetracycline pinned thread.

[Suicidal_Monkey]

wow I am truly sorry to hear your issues with these meds , But the fact that you posted this will help a lot of people understand they need to be informed about what they take !

People I have posted a New here post but i can't stress this enough - GET INFORMED ! Dont be scared out of 1 persons reaction as we are all different but use it a starting point for the questions you are going to ask b4 you let someone prescribe anything to you !!!

Side effects should only last 2-3 days as your body adjusts to meds then lessen not get worse or more severe . THE DOCTOR works for YOU ! Not the other way around - If you feel uneasy about anything Tell him/her and if they blow it off in anyway or refuse to lessen doses ,change meds GET A NEW DOCTOR IMMEDIATELY!!

Go to RXlist.com and check your meds- Go to WEBMD and check your symptoms etc . We now have the same information available to us as the docs do via the internet and we ned to use this .

- Also one last note if you are on any of these antibiotics and take supplements (ie workout powders ,vitamins ,etc) STOP THE SUPPLEMENTS even HERBAL ! and talk to the doc . You would be suprised at the possible increase of side effects from the combinations of these .



- xBreannex I hope you get better and do not suffer any lingering effects from this . Later on down the road you can look into something again but I would suggest the mildest meds to be spread out over a 3-6 month period but thats something you will have to discuss with your mom and A NEW DOCTOR.

[xBreannex]

Breanne,

I decided to come over to the forums after just writing a review for Minocycline. I wanted to post a warning to others who may be on it as well.

I also developed IIH and am now partially blind in my left eye due to the fluid in my head putting pressure on my optic nerves. I had severe headaches (that felt like migraines, but worse) and other symptoms (heartbeat in my ears, seeing stars, back/neck pain, etc) for about a year. It wasn't until I started having double vision that they were able to diagnose me. I had talked to my dermatologist and my primary care doctor loads before one ER doctor finally saw the papilledema. He immediately called a neurosurgeon in who did a lumbar puncture and found out my pressure was in the 40s. Unfortunately, it wasn't caught in time, and I do have vision loss.

It has been a very long, painful and frustrating road. I know exactly what you are going through. I have been diagnosed for about 8 months now and the Diamox is no longer working. They will probably have to put in a shunt, which I am trying to avoid at all costs.

Just know you aren't the only one out there!

To everyone else - PLEASE...talk to your doctor if you have these types of symptoms. Some people are lucky enough to have their IIH go away when they discontinue Minocycline, I wasn't one of them.

Wow, I didn't think I'd find anyone here - let alone so soon - that has had to deal with this. I'm sorry that you've had to deal with it for so long and didn't catch it in time. That would be highly frustrating to me. It seems weird they couldn't even consider the fact that it could be IIH even without the vision problems because I read that not all cases of IIH even have physical symptoms like Papilledema.

Can I ask if your symptoms faded in and out while you were on Diamox? I've been on Diamox for nearly a month now and already this past week, my symptoms have come back. My back aches again, my head hurts, and my vision blackens out. I have a neurologist appt on Friday, so I suppose I can ask then too. I'm trying to avoid getting a shunt at all costs too. I just need to get well because I have university coming up soon.

Thank you for responding...it not only shows that I'm not alone, but it again shows that again, people need to have their symptoms checked out and always to be careful.

TheChangingMan - Yeah it can be very confusing. I had to do a TON of research and even now it's semi-confusing. Just knowing the symptoms can be good enough...it's like that with anything because then you can search by symptoms and probably have an accurate guess as to what you have.

And thanks Suicidal. I wish I had gotten symptoms right away and I didn't have to have these in my system for so long, but I read some people feel the effects right away...others, not for a year. It varies. And I doubt I'll take any prescription medications for acne again only because the first one I took caused me to lose hair and develop anemia (I'm blanking on the name right now). I just need to find some good topical treatments and hope for the best.

[tattie29]

Minocycline

I just read your post regarding minocycline, this was given to me last year in October and it caused me to go into anaphylaxis shock a month later. I thought that I ws going to die, my body has never returned to normal because of taking this medication. I have suffered from dizziness, to severe headaches for about 5 months, no doctor could find out why, my joints hurt terribly, my hands, eyes, throat, lips, mouth, swelled and then I went to an allergie and astma doctor and found out that I am allergic to everything indoors and out. The doc said that this mediation altered my immune system causing me to be more allergic to things that I wan't before. I had always been healthy and never went to the doctor for anything. I have suffered for one year now and it's been unbelieveable what I went through just to get clear skin.

I contacted the FDA and they told me to get on message boards and tell people to please report their experiences if they had adverse side affects, Even if there rare it still happens, they told me to tell people to go to www.medwatch.com so that the FDA will know what is going on and how this medicine minocycline affected certain people. I am begging please report your experiences. I feel that some type of legal action should be taken, With out your health what do you have? And especially if it wasn't your fault, my body has continued to act like it has an auto immune disorder, but nothing shows up on my test.

[plink]

I was on Minocycline for eight to ten years (couple of switches to other tetracyclines in between).

It was the best antibiotic by far as far as my skin was concerned. It kept me 90%-100% clear all the time. And when I came off it, I realised what it was holding back - considerable bacne. It had held that back for all those years, not ONE problem on my back all that time. It had also held back deep spots on the back of my neck.

For my face I always had to back Minocycline up with BP cream though.

And onto side effects.....

I never had ANY noticable side effects on it whatsoever.

The key word here is 'noticeable'. Which adds a whole other level entirely....

When I came off Minocycline to go onto Trimethoprim (first antibiotic I had been on which wasn't of the cycline family) within literally a week I noticed a considerable feeling of relief. This feeling no doubt stemmed from my head, but it made me feel very -overall- better.

As time went on, I felt better and better. Then I ditched Trimethoprim after about a year to go on low dose (10mg a day) Accutane. I continued to feel better and better. EVERYTHING improved. Sight, smell, hearing, memory, sharpness, motivational DRIVE, mental ability, spirit.

EVERYTHING.

The best way I can describe it is this: You know what it's like when your ears pop when you're high up? Well have you ever had your ears pop when you didn't know they needed to? And suddenly you're like "Ahhhh, THAT's normal hearing!". Well it's like that, but on EVERY sense.

Now this is one weird feeling. When you have been on antibiotics for ten years with no known side effects, then you come off and suddenly your entire reality changes. It's absolutely NUTS. And since I had taken Minocycline since I was about 16, when I knew nothing HAHA, to about 25 when I had learn a whole lot more about the world and myself. You think you have things at least somewhat weighed up. But when I came off Minocycline, that feeling of relief, coupled with my senses all getting better and better, it definitely had a scariness to it. Even though I was getting better in all areas, it's like I was being taken out of my comfort zone. I felt so free yet so exposed. Everything is super crisp and has meaning now. Minocycline took the meaning away from everything 95%. I guess this could be some sort of depression stemming from increased cranial pressure. I've not seen any link between hypertension and depression but it's easy to imagine one. How happy can you be when your brain is being squashed?

From what I have read, I believe ALL of this stems from increased cranial pressure - intracranial hypertension - caused by Minocycline.

All those years I never knew how much my senses were being fogged out by Minocycline. All my senses were in a bubble. And if there's a scale of super depressed to super happy and a "normal" person is in the middle when unstimulated, then Minocycline constantly held me below the middle all that time. Effecting my motivational drive and taking away most of the meaning from everything.

God knows what advice I'd give. If you've been on Minocycline for a year or more and it's working for you, I'd advise to......maybe really think how you feel on it. But then again, if it is effecting you, then it's going to effect your ability to analise yourself! I'd probably say come off it and see how you feel. If you feel no different on it or off, and it's sorting your skin out, then stay on it. But after a decent period, say 12 months, come off it again and see how you feel. FORGET your skin when you come off it, just concentrate on how you feel.

Or maybe I'm the only one who has had this kind of experience. Not having any known side effects, being on it for a long time, then coming off to absolute relief. And what feels absolutely like a brain upgrade!

I think not though. I think there's definitely people on long term Minocin who have at least some brain fog they don't know about.

[MichaelB]

I also noticed when I stopped taking mino that I felt much better-I wasn't aware of any side effects until I got to the six month point-I stopped it after seeing a warning from the FDA "to only prescribe mino as a last resort, because it was discovered to cause auto immune problems". Before that, I used tetracycline for several years. I never noticed any side effects-that I could tell. I've been off everything for about a year now and just take cystic hits on my right cheek-the acne on the left side of my face has stopped the attack.

[tiathaqueen]

Breanne,
How are you doin? I was diagnosed with pseudo tumor cerebri secondary to minocylin. Very scary experience for me too. To top it all off I was diagnosed with high blood pressure. I was rushed from Will's Eye ER to Jefferson Hospital ER. I went from one ER to another b/c they could not bring my blood pressure under control. Now I just recently got off all my meds and am on a trial to see if I'm back to normal. And no I agree the topical meds were not worth it. My family was scared, my dad ended up going to doctors after I did... anyway i wanted to check up on you and see how you were doing? I hope things have gotten better.

Tia

[huckleberrylove]

I am freaking out after finding this post.

I've been on minocycline for the past 4 months and stopping today...switching to spiro. But I've had a ringing in my ears for the past few weeks and finally figured out that its probably related to the antibiotics. What do I do?!?!?!?!? I'm freaking out!!
Will it go away when I stop the antibiotics?
Do I need to see a doctor?
...freaking...out

[Wynne]

I am freaking out after finding this post.

I've been on minocycline for the past 4 months and stopping today...switching to spiro. But I've had a ringing in my ears for the past few weeks and finally figured out that its probably related to the antibiotics. What do I do?!?!?!?!? I'm freaking out!!
Will it go away when I stop the antibiotics?
Do I need to see a doctor?
...freaking...out

Stop freaking out and simply call your doctor who prescribed the mino and tell her the symptoms and that you are worried about potential side effects. Although rare, psuedotumor cerebri is a possibility for anyone who takes cyclines, Accutane, and some other medications.

This is why I have the caveat in my signature to read the full prescribing information for ANY medication you are taking. ALWAYS tell your doctor ALL the supplements you are taking with ANY visit to the doctor. Many herbs can significantly interfere with prescription medications, some with deadly consequences.

[seanm25]

Yeah my doctor just said stop taking it and call me if you start feeling any strange side effects. He said they are rare, and often reversible if caught early.