New here and feeling hopeless

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Hi, my name is Ally and I'm tapering off of Klonopin which was prescribed to me in my early 20's for Spasmodic Torticollis. I've lost about 50% of my hair to this point. It started shedding shortly after I started tapering and it continues worse than ever today. I can no longer hide the fact that it's so thin…you can see my scalp through my hair. I'm absolutely terrified and can't think of anything else but going bald. I was on 4mg/day for almost 10 years when my Husband and I decided to start trying for a baby. I had absolutely NO idea what I was in for when I started cutting back my doses. The first couple big decreases I made didn't seem to bother me too much. I went from 4mg to 3mg, then from 3mg to 2mg, decreasing every month and a half or so. My Torticollis flared up and I noticed a few other symptoms, but actually felt alive again. At a follow up doctor appointment, I mentioned going off Klonopin and he said I was tapering too fast. So, I starting cutting back by .5mg every few weeks. It was around then I started noticing my hair was just everywhere and I could pull at least 10 strands out just running my hand through it. It was alarming, but I was dealing with it. When I tried going off of the final .5mg, all hell broke lose. I couldn't possibly list all the horrific symptoms I was having. I was convinced I had some horrible physical or mental illness the Klonopin had been supressing for all those years. I literally could not read or comprehend anything. My memory was gone and I lost control of my hands. My Mother has MS and I thought for sure I was finding out I had it also. My Husband took me to the doctor who said I was in severe Klonopin withdrawal and had to taper off that last little bit even more slowly since the body wants to hang on to that last dose. He recommended I go back to the .5mg/day for a couple weeks, then alternate .25/.5mg every other day for a couple weeks, then hold at .25mg and do the same with .125, etc. I did that and quickly returned to "normal" having only minor withdrawal symptoms comparing.

 

I'm now finally at a holding point of .125mg/day. I'm so scared to go off this last dose completely. I don't know if my body's going to try and hang on to this small dose, too. Should I expect the same symptoms as before? And my hair…I can't put into words how losing my hair like this has affected me. I don't go anywhere, I don't see anyone. I sob every single day. This should be a joyous time as my Husband and I decide to start a family, but all I can think about is my stringy thin, gross hair. It sounds so superficial, but it's taking its toll. I've scoured the Internet for how long the shedding lasts and I don't see much. I've read about Telogen Effluvium, but it's been shedding like this for over 6 months now and continues. I feel absolutely helpless. Can ANYONE tell me WHEN my hair will stop shedding and WHEN will it start to grow back?? Should I expect to see even more shedding once I decrease again and am completely off?

 

Sorry this was so long. Only my husband is aware I am going through this. I'm grateful to have found this forum. Thank you for any insight you could give me.

[[Bi...]]

Ally,

 

Welcoming you to BenzoBuddies.

 

You will find plenty of support here, as others can relate.

 

If you have any questions, let us know.

 

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Billy.

[[Jo...]]

I know the pain of withdrawal and the physical, psychological, and emotional pain and struggle. I can't speak for the hairloss as I haven't gone through it. But to reassure, as others will, you will get through this. It's been a tough road for me as I cold turkey'd off of Klonipin two weeks ago. Some time it's day by day, some times it hour by hour. But it gets better. You will be healthy and happy and you will look back on this as only a struggle you went through once upon a time.

[[ma...]]

Hello Ally

Welcome to Benzobuddies, so sorry for your suffering, well done for your tapering so far, i was on diazepam and i noticed a lot of hair loss too, like you i was scared i was going bald, my hair has stopped shredding now and its looking better so i think that is what will happen to you after a few months of being free, you are wise to taper slow its best not to rush it.

keep posting you will get a lot of support here

 

(((hugs)))

Margarita

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I have always shedded a lot of hair and I too seem to be loosing more and more. That is one reasons I want off of this ASAP. I would also like some input from others. To make matters worse the doctor put me on two other drugs that cause hair loss. I am trying to go as slow as I can.

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Thank you so very much for your responses. I am SO GRATEFUL to have found this forum…I thought I was going crazy with all of these weird things happening to me. I keep reading and sobbing, reading and sobbing. I didn't know all of these symptoms were so common in withdrawal. Very, very grateful.

 

With all of the other debilitating symptoms I feel, you'd think my hair would be the last thing I'd worry about ya know? I guess it's the icing on the cake for me. I feel so awful most of the time, and now my appearance certainly proves it. I have a hard time looking in the mirror. There's just no way to disguise this thin of hair all over my head. And I generally look sick since I started this taper. Dull, older and lifeless. I have to find it in me to start tapering to this last dose of .125mg every other day…and then off completely. I'm getting myself worked up thinking about it. Ugh!

 

Magrita - Thank you. It's so great to hear your hair has stopped shedding. I would love to hurry up and get off of this completely in hopes to see some relief, too, but I can't imagine going through that again. The people's stories I'm reading on here are truly amazing. Very strong people.

 

Thanks again.

[[Mi...]]

Ally. you are in the right place for understanding and support.  All of us here are in various stages of benzo withdrawal and recovery.  You are not alone!  I too have had a lot of hair loss as I went through withdrawal.  I combed it out by the handfulls every time I washed it.  It was and is terribly traumatizing and I dare anybody to call me superficial for feeling this way!  I am now 5 weeks off my last dose of xanax and the loss has slowed down considerably.  Most who have been through the hair loss say that it comes back as we recover.  If you want to read more "misery loves company"go on over to the withdrawal recovery support forum and read the "I look Like Hell" thread.  Sounds like you have a benzo savvy doctor and that is a plus as many do not.  You will get through this.  You will get your life and your hair back! 

 

MiniMinnie

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Ally,

 

Congratulations for  coming so far in your taper. I too developed hair loss 6 months after I was placed on Klonopin. I began weaning the medication last July and the hair loss on a benzo has not slowed down. My mane and thick ponytail is long gone and I actually can hold my hair back with one of my kids rubberbands for their braces. Pitiful! I got my haircut shorter and had to let the layers grown out. I use to have to have my hair thinned and layered when cut. I look down at the drain and it is covered everytime I shower.

I just accept that this is what my hair is doing for now and I can not predict what will happen to it in the future. Worrying about it ( stress) can make it fall out too. After I saw my mom go through chemotherapy and  she lost all of her hair, I remember that and that puts it into prespective for me. 

I have also had two pregnancies and my hair never looked better than when I was pregnant! Something to look forward to. I am proud of your efforts to get off this medication. It is the hardest journey I have undertaken.

Have you had recent labs drawn specifically your thyroid checked?  Also, the person that cuts your hair would be able to tell if you have any new hair regrowth that may not be visible to you. I  am familiar with Telogen Effluvium. It usually presently several months after a stressful event and can persist. A dermotologist may be of assistance, I know with rogaine type products once you start you have to continue using them. Is your hairloss generalized or is it falling out in clumps? Generalized hair loss has been reported on klonopin and as a symptom of withdrawal. I know that your concern has been addressed on this forum before or perhaps you can search for Hair loss and see what others have tried.

 

all the best to you!

 

Recover

[[am...]]

Hi Ally,

You seemed to have tapered pretty quickly and that would explain most of your symptoms. I wanted to chime in here because my hair was falling out too in the beginning. I was found to have no thyroid (in fact, I got so sick from that - lost about 40 pounds) and it took 4 months for the medication to regulate my thyroid. Once that happened, my hair stopped falling out. As far as the benzo goes, it has been awful as I tapered too fast.  Here is my suggestion since you are afraid to go off that last dose - perhaps dissolve your current dose in water and every two weeks, extract 1 ml (I use a syringe and started with 35 ml of water), and spread what is left over 3 or 4 does during the day. I dry tapered my original dose until I got to .5 mg of my benzo and then started the water titration.  It is less scary to extract just a little bit than to think about stopping all together.  Somebody gave me that suggestion on this forum and I'm able to function again and a lot less fearful. I hope that helps. Good luck!

amb

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MiniMinnie - Thank you so much! I have felt very alone the last 5 months in this taper. My poor husband is the only person aware I'm doing this/going through this. All he hears from me is complaining. I hate it, but somehow voicing how crappy I feel all the time helps. We've moved around quite a bit over the last few years and have just moved again, so I have NO doctors at the moment. I'm dreading finding new ones all over again and going into this whole saga. I was indeed very lucky to have found one though that knew what the heck was going on because I certainly didn't! I'm so happy to hear your hair isn't shedding nearly as bad. I feel like there may be some light at the end of the tunnel.

 

Recover - I'm sorry your mom had to go through chemotherapy. I hope she is well today. I was actually diagnosed with hypothyroidism a couple years back. Was initially put on too much Synthroid, but now seem to be on the right dose. I ran to have bloodwork done as soon as my hair started shedding because I was sure it was thyroid related, but all looked good. We've just moved and once I find a new doctor will have my levels checked again. We're in our 6th month trying to conceive and I'm starting to realize it was extremely naive and stupid to wait so long before tapering. I just didn't know and am kicking myself for it now. I have a horrible feeling it's affecting my fertility. If I start to worry about that too much, I go a little crazy. My hairstylist (new, have only seen her once now) did say I had new hair growth, but I'm wondering if she was talking about the broken hair in the front…it just breaks off and is short stubby hair. I'll ask her again next time. The hair loss is not localized to any area, it's all over, a little worse in the front. I'm apprehensive to try Rogaine because of trying to conceive. Just so nice to know I'm not the only one. Thank you so very much!

 

amb - I am starting to realize I did taper quite quickly I guess. I told Recover about my thyroid issues. I'll have them rechecked and pray it's a simple dosage adjustment! Please forgive me for sounding like a complete idiot, but I had no idea titration was something you did on your own. I've read about it, but thought it was something the pharmacy did. I take my entire dose before bed. So, I would just dissolve that 1/4 of the pill in a smidge of water and syringe out the .35ml? Then just drink the water? I will absolutely start doing this, just want to make sure I am doing it correctly. Thank you so much for telling me about this! I panic every time I break up my pills that they're not all EXACT!

 

Just wanted to say also that reading so many people commenting about "brain fog" on this forum has made my day just as hearing my hair will probably come back. I feel incredibly stupid all of the time and constantly second guess my own judgement. I could go on, but this was a big one! Thanks again.

[[am...]]

Hi Ally,

Here is how I do it. I take my syringe - it is 10 ml. I fill it up 3 and 1/2 times with water and then I dissolve my pill in that.  I put it in a small plastic container with a lid (because I dose 3 times a day). Every two weeks, I extract 1 ml of the water and divide what is left into 3 doses. I started at 35 ml and now I've extracted 12 ml so far. It literally has minimized my symptoms. The ones I am left with at this point (I had 25 at one time - very dehabilitating!) are hyperacusis, tinnitus, and dizziness - and all of those are diminishing.  At first, I had a day here and a day there where I felt really good, then 2 and 3 consecutive days. And when I make my cuts, sometimes I feel it after about 3 or 4 days, but I know what it is so it doesn't scare me anymore.  With you, since you are just dosing at night, you can just begin to extract at night - but just don't go too fast. Your brain needs time to heal and start producing gaba again.  Even with 23 ml for me left to go, it will take me 46 weeks - but I really really believe it has minimized my symptoms.  Good luck. Let me know if I can help in any way.

amb

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amb - This sounds great! I am going to pick up a syringe tomorrow. I can't thank you enough. I think I got lucky (insanely lucky from what I'm reading) that I was able to decrease so much so fast in the beginning. I learned my lesson trying to go off of .5, though. I'm glad to hear you don't have so many symptoms. 25 at one time is excruciating. Thank you so very much once again.

[[am...]]

Great! Good luck. Let us know how it goes!

amb