misstree: topamax- my life has turned into a nightmare

[misstree]

 I was dependent on Topimirate (Topamax) for over 4 years, and wish Id found these sights before I started. Had I known it'd be so horrible Id have stayed away.    4 or so years ago I checked myself in the hospital determined to stop binging, purging and starving.  It had been on and on since I was 13 (was 27 at the that time).  A psychiatrist prescribed Topamax upon my leaving the hospital, stating I had bipolar and body dysmorphia.  At first, I was petrified of not having my eating disorder as a crutch.  The first few weeks I muscled through, and kept myself as distracted as possible when I found myself worrying.  I dug deep into my emotions in a journal as a healthy purge.  And suddenly, I didn't care, I stopped thinking about food, and just enjoyed it.  I simply just stopped.  I stopped binging.  I stopped worrying myself into a purge.  I stopped obsessing about my intake, or ruminating over weight or image.  I no longer sat in front of the mirror picking my face for hours.  I was normal, worrying only a bit, and then letting it pass.  So at 200 mg for over 4 years, I was okay, for better or for worse.  Some side effects were annoying, like thinning hair and memory issues- but they were tolerable to self destruction.  

 

Then I saw a new psychiatrist in November 2014, who said I should have never ever been put on Topamax bc I had history of an eating disorder.  She gave me 150 mg, and sent me away to see her in a month.  Then my insurance changed again, and I couldn't make it into the appointment bc it wasn't covered.  So I tapered myself after several months on 150.  About one month into my taper at 150, I began to think something was really wrong.  I was still working, but my mood and mental status began to change, and physical symptoms presented themselves.  Mentally, I became paranoid, somnolent, agitated easily, felt faint and alternated between exhaustion and insomnia.  I had eye pain and grittiness , blurred vision and halos, headaches daily (understandable as topamax treats migraines), jaw pain, back pain high and low, arms tingling and joint pain.  And around May 2015, I was showering and noticed larger amounts of hair coming out into my hands and clogging the drain.  And when I looked in the mirror to put up my hair, I saw several places where I could see my scalp CLEARLY.  It wasn't the simple thinning topamax caused for the 4 years, it was clumps.  My eyes hurt more, and i used artificial tears about 5-6 times a day.  My eyebrows and eyelashes began falling out, and pubic hair  They simply weren't staying in the follicles, if I touched them with any force, they fell out.  For instance  when I tried to use eyeliner, they'd attach to the pencil and just sit on my cheeks, dead.    

 It wasn't the simple thinning topamax caused for the 4 years, it was clumps.

 

I thought I needed to go off, but at this point saw my health was deteriorating with each taper (I took myself down to 125 in June).  I thought I needed support physically because something was seriously WRONG.  But I could NOT find a doctor who would help me through it. Most just wanted to prescribe more psychiatric medication instead.  I surmised it was all from withdrawal, as symptoms were not an issue UNTIL I decreased my dose after 4 years.  However, no doctor would admit to Topamax being the issue, or assist in my body withdrawing and getting me off it with physical support.  I went to three different psychiatrists, 4 holistic or integrative doctors, a rheumatologist, 4 different internists, 2 obgyns, 4 eye doctors, 2 endocrinologists.  Ive spent my entire past half year going to doctors and feeling suicidal.  Each wanted to put me on another brain med.

 

 I found a psychiatrist with experience in treating with Topamax, and she helped me to decrease off 125mg that I'd been on two months.  I tapered from 125 to nothing over two weeks.  And Ive gotten worse.  Now Im having stomach issues and sebbhorheic dermatosis, and have not had my cycle since June.  It is not alopecia aereata, I have been to several dermatologists.  I have now been off since September, and am so desperate, I am about to go back on it.  My hair got worse, my mood got worse ( I can barely do anything, think about anything else, and feel overwhelmed by life).  I know this isn't me.  Something is wrong and I need guidance.  Does anyone experience using topamax?  My most recent doctor (integrative medical doctor) is a specialist in those who have found no answers and been to every doctor you could think.  He said I have autoimmunity, and inflammation.  I was told me I should not have gone off the medication without some sort of medical support, and told me to go back on topamax, or take lamictal for help.  It seems a bit like a hair of the dog kind of treatment, but Im at the point where I can't fight this anymore.  What do you all think?

 

PLEASE HELP.

[KarenB]

Hello Misstree and welcome to s/a,

 

I'm so very glad you've found this site, and so very very sorry for what you've been through.  That's too much pain and trauma for anybody to cope with.  We have a lot of info here about how to taper safely, and you will also get a lot of support from the other members.  We all know what these drugs can do, and we all know about being in withdrawal.

 

You've been of it since Sept - so about 4 months?  Reinstatement works best the closer you are to your last dose, so there are no guarantees.  However read that link and see what you think.  You are suffering so much that it really might be worth a try. 

 

It can feel like a backwards step, but the idea is that you find some relief and take time for your central nervous system to stabilise.  Then you can make a gentle tapering plan.  We recommend tapering by no more than 10% of your current dose each month. 

 

This is a discussion of Lamictal to ease w/d which I recommend you have a read of. It's not as straight forward as your doc made it sound. 

 

Once you've read those come back to this thread (which can be your journal) and ask any further questions.  We really want you to get through this okay.  It would also be helpful if you filled out a signature so we can see your details whenever you post. 

 

Sending you hugs,

Karen.

[misstree]

Hello Misstree and welcome to s/a,

 

I'm so very glad you've found this site, and so very very sorry for what you've been through.  That's too much pain and trauma for anybody to cope with.  We have a lot of info here about how to taper safely, and you will also get a lot of support from the other members.  We all know what these drugs can do, and we all know about being in withdrawal.

 

You've been of it since Sept - so about 4 months?  Reinstatement works best the closer you are to your last dose, so there are no guarantees.  However read that link and see what you think.  You are suffering so much that it really might be worth a try. 

 

It can feel like a backwards step, but the idea is that you find some relief and take time for your central nervous system to stabilise.  Then you can make a gentle tapering plan.  We recommend tapering by no more than 10% of your current dose each month. 

 

This is a discussion of Lamictal to ease w/d which I recommend you have a read of. It's not as straight forward as your doc made it sound. 

 

Once you've read those come back to this thread (which can be your journal) and ask any further questions.  We really want you to get through this okay.  It would also be helpful if you filled out a signature so we can see your details whenever you post. 

 

Sending you hugs,

Karen.

 

You replied to my post in Jan 2016, no idea why I had no notice.  I wish I had seen this months ago.  It is now May, nearly june, and I have still been having many issues since my post in January, and since withdrawing.  I did not reinstate, as I have been worried about introducing the drug.  My doctor still is insistent.  But I need to ask, would it even work if I reintroduce topamax at this point?  my doc wants to start me on a teeny tiny dose (half of a topamax sprinkle, so 7.5-8 mg)  Would it possibly still work if I am suffering still, now 7 months later?  I have not had my cycle since June 2016, and my hormones are all extremely low, cortisol high, and depression at its worse as my beauty has completely been robbed (which is horrible for my bdd).  Could it still possibly help to reinstate?  Or make things worse.  Please please help.

[Petunia]

Hi Misstree,

I'm sorry you are still having symptoms, but its not surprising, a 2 week taper is not much different from going CT. But as you wrote, its been 7 months now, so reinstatement is less likely to work, but still worth trying I think. By starting with a very low dose, you can minimize the risk of experiencing a bad adverse reaction.

 

Here is our reinstatement topic for more information about what to expect and how to proceed:  About reinstating and stabilizing to stop withdrawal symptoms

 

Please would you update your signature to reflect your recent tapering history so its easy to understand your situation at a glance.