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bheb: akathisia without dose change

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Carmie
On 5/8/2018 at 7:54 AM, bheb said:

 

Yes! Funky town is a JAM. 

 

I used to restrain myself and tell myself "don't celebrate, it will get worse again, don't get false hope." But I've gotten better at ignoring those negative thoughts. Who knows when things will worsen, and yes hesitation is a natural reaction when you're dealing with something unpredictable. But there's also no logic in denying myself a good mood if I can help it!

 

 

Hey there Bheb, 

 

How are u doing? I just went to write down bheb and autocorrect changed it to Bieber😂😂

 

Yep, fear can restrain us from being in a good mood. Fear of fear can paralyse us. Crank up the music n dance around the loungeroom in the moment. Don’t worry about the next moment. This moment is all we have. 

 

Crank up funky town. I was even dancing the chicken dance the other day with a friend, that caused lots of laughter, which was good for the soul. Then I couldn’t get the music out of my head. Nananananana, Nanananananana😂. Help!!!!

 

Keep celebrating when you can.

 

Sending hugs🤗

 

 

 

 

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bheb

Thanks for stopping by carmie Unfortunately haven't been celebrating recently just really trying to power through.

 

I sometimes can't believe how persistent the akathisia still is. I've had other symptoms but they've all come and gone (besides tinnitus, don't know why it has stayed as well). 

 

Im doing my best to stay active and busy as that's really the only thing that helps my akathisia and agitation -- movement. I get seriously bummed that I can't lie down and enjoy a movie, that being lazy is no fun and just leads to a build up of excruciating tension.

 

But I am getting by. And have decided to resume taper of Prozac while on a break from school. My biggest struggle is in the evenings when I have to lie (or try to) for sleep. I'm hoping one day I'll go back to looking forward to lazy evenings, to being able to sit comfortably in my skin.

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bheb

Wanted to report something strange to see if anyone had any insight.

 

Sometimes I take a zinc supplement when I have cold sores, canker sores, or any potential immune system issue. During those days I feel much worse akathisia-wise. But when I stop the supplement I feel better than baseline for a while.

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Carmie

Hi Bheb, 

 

I don’t take supplements so don’t know anything about zinc, but was just wondering how you’re doing with the akathisia. You said last time you couldn’t even lie down n watch a movie. Has that changed at all. Do u ever get times when you can chill with a movie?

 

I really am sorry you have akathisia, I get it too if I’m in a bad wave. 

 

Sending you big hugs🤗🤗

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bheb

I did begin tapering off Prozac (after the reinstatement) so perhaps that's more responsible for me feeling slightly better.

 

I had about an hour window and did lie down comfortably. Haven't had that since but I haven't felt my worst so that's good.

 

howre you carmie??

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wantrelief

Hi bheb,

 

I am sorry to hear you are still struggling.  It sounds promising, however, that you are feeling slightly better and did experience a short window where you could lie down comfortably.  I really hope you get some relief soon.

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Carmie
6 hours ago, bheb said:

I did begin tapering off Prozac (after the reinstatement) so perhaps that's more responsible for me feeling slightly better.

 

I had about an hour window and did lie down comfortably. Haven't had that since but I haven't felt my worst so that's good.

 

howre you carmie??

 

Hi Bheb, 

 

Im glad you’re not feeling worse and you got a little bit of a lie down. It’s a moment at a time, isn’t it?

 

I’m not too bad withdrawal wise at the moment because I haven’t tapered for a long time and am not going to taper again until the end of August. I’m just really sick with a chronic illness but I’m hoping to go to Australia Zoo tomorrow so I’m excited. Looove animals and it’s a happy zoo as the animals have lots of room to roam.

 

Take care and I hope you get some more windows where you can lie down and enjoy a movie💚

 

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bheb

Still tapering off my small reinstatement (need to remember to update signature next time I’m on computer) , almost done

 

Confused why I don’t have an exacerbation or lessening of symptoms with the taper. I would think it would make some difference in akathisia but it doesn’t.  

 

Feeling so stuck. Cant sit still comfortably. Very agitated. Going to see a therapist soon because I need some way of moving forward.

 

also need to remember to put in my signature — i was reminded by seeing someone post about it — I did a trial a while ago of cyprohepatidine  for both allergies (after quitting Zyrtec) and to see effect on akathisia a while ago. Think it may have eased akathisia in the past. I am considering returning at higher dose after my taper is finished. 

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Altostrata
On 12/26/2017 at 7:25 AM, bheb said:

Got it bubble, sounds good to me.

 

Alto, no I didn't have a skin rash. I don't really know why my doctor put me on it honestly. I was having what she called paresthesias and I think it was maybe for that. Also that should read promethazine, methocarbamol, and prednisone. I'm pretty sure that methocarbamol was for the paresthesias as well. I now realize I was having some strange neurological symptoms that included weird skin sensations and sensitivities that may or may not have had something to do with Prozac. 

 

I take my Prozac at noon, and Klonopin at 5:30pm. I just switched timezones, so before I was taking them at 5pm and 9:30pm. As far as a pattern, I really can't discern anything. My symptoms do vary a lot during the day, but not in the same way. Sometimes mornings are better, sometimes nights are. Sometimes exercise makes my body more restless right after, and sometimes more relaxed. And so on. However, I do think having Prozac earlier in the day now is helping with sleep.

 

Thank you

 

Are you still taking Klonopin?

 

How long were you taking promethazine, methocarbamol, and prednisone?

 

What drugs are you taking now, at what times of day and what dosages?

 

On 2/6/2018 at 6:27 PM, bheb said:

 

Thanks Michele. Actually had a decent break today.

 

Feeling positive and empowered recently, even before I had a break of symptoms. Motivated. But also kind of strange in this break -- a tiny bit dysphoric and anxious...like a milder form of the terror. I am okay with this as long as it doesn't escalate. Trying to build up some tools to self-soothe. So far, diffusing lavender oil and using magnesium lotion. This is so strange for me since, in the past, my anxiety was purely related to whether I thought I was going to die or not (typical panic attack stuff). This feels unrelated to anything. 

 

I may start some fish oil and/or NAC soon since I've heard they can help with the terror, and mental symptoms in general. Would love some advice for dealing with these vague feelings of not feeling right in my body.

 

On 5/3/2018 at 9:13 PM, bheb said:

Interesting/maybe positive note:

 

Today I found that I could sit still with great ease and comfort for a couple hours. However, this meant literally just sitting down, not lying down. Able to do lots of reading at my desk. What's weird is that the moment I prop my legs up, or lie down in bed the deep itchy restless feeling appears and accelerates (with respect to how long I'm laying down).

 

Any thoughts on why this may be?

 

Even if I don't figure out why, it seems the key will be avoiding lying down until I am absolutely sure I will knock out. Keeps me from having to endure the worse of agitation for too long.

 

On 7/10/2018 at 3:30 PM, bheb said:

Wanted to report something strange to see if anyone had any insight.

 

Sometimes I take a zinc supplement when I have cold sores, canker sores, or any potential immune system issue. During those days I feel much worse akathisia-wise. But when I stop the supplement I feel better than baseline for a while.

 

I would see if a tiny bit of zinc gives a consistent positive results. It's an essential mineral, but you don't need much.

 

On 7/12/2018 at 6:40 PM, bheb said:

I did begin tapering off Prozac (after the reinstatement) so perhaps that's more responsible for me feeling slightly better.

 

I had about an hour window and did lie down comfortably. Haven't had that since but I haven't felt my worst so that's good.

 

howre you carmie??

 

When did you start tapering off? What is your tapering methods?

 

It seemed that your symptoms were improving a bit. Why did you decide to reduce Prozac?

 

It's not clear what you're taking now. Do your symptoms follow any daily pattern?  Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

 

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bheb
2 hours ago, Altostrata said:

Are you still taking Klonopin?

 

How long were you taking promethazine, methocarbamol, and prednisone?

 

What drugs are you taking now, at what times of day and what dosages?

 

I wasn't on the promethazine, methocarbamol and prednisone longer than a month back in 2016.

 

Drugs as of now:

I am still holding .07mg Klonopin at 7pm every night.

 

At 12:30 PM I am taking .01mL of a prozac solution. This is the last mark on the most detailed syringe I could find. So I'm considering stopping here. All I have of Prozac is oral solution, but I could potentially try to get a different script to make a more diluted liquid?

 

I was tapering off by measuring the percentage drop in ml not mg. I don't know how many mg of Prozac that is, but I wrote down the conversion somewhere and will try to find.  For reference my starting mL was less than .5ml (~1.6mg). In late May I decided to taper off because I didn't notice it helping (later wondered whether improvement was due to quitting zyrtec and starting cyproheptadine -- that happened late January 2018) and I guess I got worried it would make me worse. 

 

There isn't a huge daily symptom pattern -- what's most noticeable is certain activities or positions. For example, lying down is always horrid and i have to get up and move around. 

 

Okay, I will try a low dose Zinc at some point. So I could take less than the starting dose? Maybe with a pill cutter?

 

I used to take detailed notes for a while-- I've got at least four months records of them. However, I found myself hyperfocusing on symptoms whenever I did that so I stopped. I will try again and try to be more neutral in recording my symptoms and be more at peace with it .. maybe something therapist can also help me with

 

Thank you very much for your time

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Altostrata
15 hours ago, bheb said:

There isn't a huge daily symptom pattern -- what's most noticeable is certain activities or positions. For example, lying down is always horrid and i have to get up and move around. 

 

Is this better or worse at any particular time of day?

 

When was the last time you changed the Klonopin dosage? Did your symptoms change after that?

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bheb
1 hour ago, Altostrata said:

Is this better or worse at any particular time of day?

 

When was the last time you changed the Klonopin dosage? Did your symptoms change after that?

 

No, time of day doesn't seem to matter. 

 

The Klonopin has been consistent since October 2017. I started having mental terror symptoms in September 2017, so holding the Klonopin where it is has greatly reduced the terror and anxiety. 

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Altostrata
On 9/20/2018 at 6:41 PM, bheb said:

At 12:30 PM I am taking .01mL of a prozac solution. This is the last mark on the most detailed syringe I could find. So I'm considering stopping here. All I have of Prozac is oral solution, but I could potentially try to get a different script to make a more diluted liquid?

 

 

You can add a measured amount of water to your solution.

 

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right. You may not see a pattern, but we might be able to.

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bheb

Oh I see, yes that makes sense. Well I'll put here what I had written in previous weeks for the meantime, as I go back to keeping a journal. 

 

8/6

10 AM Egg sandwich

Able to sit for a moment

12:30Prozac

4pm lying down at home no itchiness but have upper body tension

6:30 more itchy uneasiness everywhere

7 teriyaki chicken veg and rice

7 klonopin

8 extreme nausea

8:15 dark chocolate

10:30 in bed, terrible tension

12 am cant sleep, itchy agitation

 

8/7

Woken up at 7, awful itchiness sets in fifteen minutes later

Very hungry

11 teryikai bowl and ice cream

11:30 itchy tension on couch

12:30 prozac

2pm eggs andttoast

[i didnt have the rest of this day]

 

8/9

Awful itchy agitation at every second upon waking

11 Sandwich 

12:30prozac

3 thai curry

upset stomach

7pm klonopin

distract most of evening, 

12 am sleep

4am terrible awful itchiness

9 am back to sleep for an hour

 

 

8/12

10 am Itchy tension but not the worst ever

have some Canker sores

12:30 prozac

1pm Extreme hunger/nausea (these are issues ive had chronically)

7pm klonopin

12am Increasing itchy agitation in bed midnight can't sleep

Wake up 5am chest anxiety agitation, almost caffeinated feeling

 

I don't have food for some of these days, so as I start to keep my journal again I need to remember to include that. 

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bheb

Hello everyone, it's been a while. I try to stay away when I find myself hyperfocused on my symptoms. 

 

The akathisia is still following me around. I get small episodes of reduced intensity (matter of minutes or hours) but still struggle with agitation and restlessness everyday. 

 

I have tapered completely off of my Prozac reinstatement. I am still holding Clonazepam at .07mg. I went back on cyproheptadine which I took both for allergies and for a chance at lessening akathisia earlier last winter/spring. I take it mostly for sleep since magnesium and meditation haven't helped much. However, I know cyproheptadine has a potential to cause restlessness, so I would like to be off of it soon...realizing that it may be more problematically psychoactive than I thought.  Oh, and I also started spironolactone for my acne (I don't think there should be an interaction, but if there is I will discontinue). 

 

As far as lifestyle, I cracked down harder on caffeine and completely eliminated it for over a month (I was still having small amounts in tea). I didn't notice any improvement and reintroduced a small amount a few days ago with no uptick.  My next step is to get stricter with my diet. I still consume too much sugar.

 

Going to update with a few days of symptom patterns:

 

Wed.

9:30 am itchy agitation (how i describe akathisia) immediately upon waking

10:30 eggs and potatoes, spironolactone, 1000mg lysine, 4mg

3PM agitation turns to more painful tension

7pm cannot stay seated, Clonazepam dose

9PM 12mg Cyproheptadine

 

Thurs

10AM painful tension

11AM breakfast and lysine, spironolactone, 4mg cyproheptadine

1PM choked up chest tension (this is pretty rare for me nowadays)

3:30 able to lie down for a moment

7 clonazepam

8PM sped up restlesness

9pm 12mg cyproheptadine

 

Fri

3AM awake middle of night

10:30, lysine, 4mg cypro, tension lessens a little

12pm Thai food, spironolactone

2pm able to lie down for a few minutes

10 dinner, cyproheptadine dose

 

Saturday

9am itchy burning tension, 4mg cypro, lysine

10:30 chickpeas salad sandwich

2:45 able to lie down for a couple minutes

traveling, very awful itchy agitation

5pm chicken and rice for dinner, small piece of cake

10pm burning tension, cypro 12mg

 

Sunday

11Am awful itchy agitation

11:30 eggs and avocado, 4mg cypro dose, lysine

12:30 very extreme uptick in agitation, clothing bothersome

2:30 extremely itchy burning tension, can feel it in my arms even while walking around

3pm calms a little

5:45 awful awful itchy agitation, hard to sit on train

6:30 went out for tacos, able to sit down a little more comfortably while eating

10pm cypro 12 mg

 

Monday

9am akathisia took a few minutes to set in, some moments of peace upon waking

10am eggs, 4mg cypro, lysine, spironolactone

12pm have to move around

2:30 agitation settles a bit

8pm pasta, very hard to stay seated

1am 12mg cypro and spironolactone

 

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wantrelief
On 1/8/2019 at 2:35 PM, bheb said:

The akathisia is still following me around. I get small episodes of reduced intensity (matter of minutes or hours) but still struggle with agitation and restlessness everyday.

Oh bheb - I am so sorry to read that you are still plagued with the awful sounding akathisia.  I so hope the small breaks you get increase.  You are very strong and brave getting through all of this.  I so hope you get some relief very soon.

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Scotteves

Oh geez. Klonopin! Cipro! Youre on a seriously dangerous cocktail for your nervous system. Never mix antibiotics with benzos. Benzos are hell in a handbasket and your brain can become dependent on them after a week. If you haven't been on them for long then id suggest tapering off them immediately but don't cold turkey. It's an extremely dangerous drug to cold turkey. Took me 18 months beforw I felt halfway normal again after benzos. YouTube benzo withdrawal. Just a tip guys - our brains are trying desperately to get to a normal natural state. Never medicate more to help with withdrawal syndrome as it just makes it much worse. It's digging a deep hole. 

 

I'd recommend cleaning up your diet as much as possible. Cut sugar out almost completely. Other triggers are too many carbs. Some foods like hummus (chickpeas) and honey are known triggers. Avoiding alcohol is by far the most important though, it's the difference of life and death for many of us. It works on the same gaba receptors as benzos.

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bheb

Thank you wantrelief, means a lot.

1 hour ago, Scotteves said:

Cipro

Ah sorry for the confusion, @Scotteves! The “cypro” i mention in my notes is actually cyproheptadine, an old antihistamine. I forgot about the antibiotic cipro—which I stay far away from!

 

Thanks for your advice, but I’ve actually been on a benzo for two years so not stopping soon. You’ll notice it’s at quite a low dose though (.07mg) — I was tapering off but now I’m holding for a while. When I too rapidly tapered off before I had awful terror and panic. I’m not ready to resume tapering quite yet.

 

I didn’t know that about chickpeas! I used to eat quite a lot when I was vegetarian. Yes, alcohol has been cut out for quite a while, but the sugar and carbs could always be reduced for me

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bheb

These past few days after stopping cyproheptadine I feel much better. 

 

I even feel better than I felt before taking the cyproheptadine, oddly enough. Not going to question it, just enjoying these moments of being able to tolerate lying down. I can’t sleep but that doesn’t even bother me because there’s little akathisia. It feels really nice to be able to rest and replay good memories and stuff. 

 

The agitated itchiness is still there but it’s at such a low level. 

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wantrelief

This is such good news, bheb!  I am so glad you have been feeling better.....you have been so strong and brave.

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bheb

Yes truly comes when you least expect in sometimes? I was preparing to grit my teeth through what seemed like an awful wave but it quickly turned into a window

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bheb

Window seems to have closed now, but wow that was such a nice surprise. I hope I start to follow the windows and waves pattern of stabilization more closely now.

 

tomorrow I’m going to get a new form of magnesium and see how i do. Mag Malate seemed to be okay in the past but want to see if I get more relief from glycinate 

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bheb

Very confused by my body’s reaction to antihistamines. I’m now remembering that something similarly happened with Zyrtec in 2017. I stopped it for fear it was exacerbating things and sure enough I felt immediately better upon stopping. But then a week later symptoms flared up again 

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Benzhelp

Hi bheb, 

 

Sometimes we have odd reactions to some drugs since our nervous systems have been stressed by these drugs, I can relate. Wishing you the best on your Tapering journey <3 I hope you have more windows.

 

Take good care of yourself. Love, Light and Blessings <3

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Carmie

Hi Bheb, 

 

I’m so sorry you had a bad reaction to the antihistamine. Our bodies can be so sensitive to pretty much anything because of these meds, including supplements and food. I’m sorry too that your windows have closed, but when windows do open we know there will be more ahead. Here’s to more windows just around the corner somewhere, Sending hugs🤗

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bheb

Thank you both benzhelp and Carmie.

 

Yes, trying to take it as a good sign regardless. Just wish I could find concrete causes for windows so I could recreate them! But I realize much is out of my control.

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bheb

Past two nights took mag glycinate to sleep. Worked well.

 

Awful itchy agitation through the days though. The capsules I have are 400mg and say you can take three. Should I take another in the mornings?

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bheb

Unfortunately the mag and meditation stopped working right after the last entry. Since I haven't been sleeping much the terror has come back a little bit. Not as bad as the early days of my big benzo cuts though. 

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Carmie

Hi Bheb, 

 

How is your sleep now? I’m sorry the magnesium stopped working as regards helping you get to sleep. I took magnesium for the first time the other day and it didn’t like me at all, it ramped up my symptoms. I’m not sure if a different type would do the same thing, but for now I’m staying away from it. It helps a lot of people though. It has been suggested to put it in water and sip on it throughout the day. 

 

I’m sorry too you’re in a state of terror. It’s a horrible feeling, isn’t it? Have you tried listening to any of the Claire Weekes videos on YouTube. She has such a nice calming grandmotherly ( is there such a word?😄) voice. 

 

Take care💚

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bheb
On 2/13/2019 at 3:20 PM, Carmie said:

Hi Bheb, 

 

How is your sleep now? I’m sorry the magnesium stopped working as regards helping you get to sleep. I took magnesium for the first time the other day and it didn’t like me at all, it ramped up my symptoms. I’m not sure if a different type would do the same thing, but for now I’m staying away from it. It helps a lot of people though. It has been suggested to put it in water and sip on it throughout the day. 

 

I’m sorry too you’re in a state of terror. It’s a horrible feeling, isn’t it? Have you tried listening to any of the Claire Weekes videos on YouTube. She has such a nice calming grandmotherly ( is there such a word?😄) voice. 

 

Take care💚

Hey Carmie,

 

Thanks so much for checking in...don’t know how I didn’t see this earlier. Sleep is still pretty poor. Hard to fall asleep and waking up many times throughout the night. I am thinking about trying some melatonin, but I know it can cause restlessness in some, so it will be hard for me to tell since my agitation is already so high. Thoughts? I know it’s been recommended around here to try no more than 1mg.

 

Yes the terror is no good, but I’m finding it at a manageable level compared to the more physical agitation/tension. I think I have seen the Claire Weekes, but will check out again.

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Carmie

Hi Bheb, 

 

Did you start taking melatonin? Yes, best to try really low doses. We can be so sensitive to many things. Melatonin has helped some people though. Taking supplements is all trial and error, as I already mentioned I tried some magnesium recently and it didn’t like me whatsoever! I might try a different kind in the future, or just give it a miss. Magnesium seems to help quite a lot of people though. It’s all trial and error for each and every one of us.

 

I’m glad you’re finding your level of terror at a manageable level. Boy, our poor brains coming off these meds don’t know what hit them! We will all be success stories one days, it’s just a very slow and long journey. 

 

Wishing you all the best💚

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bheb
On 2/20/2019 at 7:40 AM, Carmie said:

Did you start taking melatonin? Yes, best to try really low doses. We can be so sensitive to many things. Melatonin has helped some people though.

 

Yes I did, 0.5mg. It helps me fall asleep but I wake up around 3:30 AM (still awake). I guess I could try more but I only have capsules so I'd have to double up and go straight to 1mg. I'm afraid to take any more though since some people report "restlessness" and I'm already prone to that.

 

Yes,  I am so so grateful the mental terror is at bay. That's why I am still holding my benzo (rapid taper caused the terror). I just wish the akathisia/agitation that sent me to benzos in the first place would settle. But I try to be patient by reminding myself it could be much much worse. Akathisia + mental terror was truly a horrific combination and I thank my mind daily for letting the terror go. 

 

 

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bheb

By some miracle I will actually graduating college soon. It’s been almost impossible to do with akathisia and not being able to comfortably sit.

 

I was hoping to take a year off and work in a restaurant or some setting where I wouldn’t have to be at a desk 9-5 combating the agitation, restlessness, tension. But my family disproves. They think this is me giving up on my career but I don’t know how to communicate the severity of this and how much I think it would be healing to do something else.

 

How do others cope with this? Having to work?

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bheb

Agitation, tension, restlessness roaring as usual, but I just noticed something positive. The tinnitus I started to get when I first reduced my benzo has toned down a bit. Still there, but like the volume of it has been turned down. Tinnitus never bothered me all that much compared to other things, but I'll take any improvement I can get!

 

In other news, I am considering raising melatonin to 1mg since the .5mg hasn't quite given me a full night's sleep. 

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wantrelief

Hi bheb - Whenever I read about what you are going through, I just think about how brave and strong you are.  I am so glad you have noticed that the tinnitus has toned down....that is really good news.  I so hope you get some improvement in your other symptoms soon.  Oh, and I wanted to congratulate you on graduating from college!!  That is such a huge accomplishment, how you did that with akathisia I do not know.  I hope you are very very proud of yourself!

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bheb
11 minutes ago, wantrelief said:

Hi bheb - Whenever I read about what you are going through, I just think about how brave and strong you are.  I am so glad you have noticed that the tinnitus has toned down....that is really good news.  I so hope you get some improvement in your other symptoms soon.  Oh, and I wanted to congratulate you on graduating from college!!  That is such a huge accomplishment, how you did that with akathisia I do not know.  I hope you are very very proud of yourself!

 

Thank you WR. I do not know either -- many times I was afraid I'd have to drop out, but I'm still here. I always have akathisia pretty much, but when it gets milder I can sit still with lots of restraint/music and just bust out whatever assignment is due that day. 

 

Anyway, your words mean a lot! Hope you have a good afternoon/night.

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