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Rabe: how to taper and adjust Viibryd while on Clonazepam

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Rabe

Has anyone ever heard of salt issues...being sensitive to salt?

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Rabe

Today I got up and going to my daughters.  She had said to me that even in the bad times things were not like this unless it was a drug or something I was reacting to and she had texted she wondered what had changed recently...within month or so.  I looked back in my notes and I had started adding salt to water and salt to my food and eating some chips and popcorn with salt to keep my sodium up as well as the potassium.

In the past I have not done well with salt .... ended up in ER once with a sky high BP after a few days of pork and sauerkraut.  Have reacted to IV's with sodium after births and my accident...and along way had problems related to salt, leg selling, sweat tests all screwy.  I also had a panic episode yesterday that was exactly like as child and teen....was  eerie to recall it so well.

In any case I did none of the added salt today and it has been a better day.  The puffiness is better, I feel better.  Maybe it has nothing to do with it but I dont think so.  

I texted my therapist and asked her if she had heard of such a thing as salt sensitivity and she sad yes.  I was surprised.  

I truly think some people can have a problem with their electrolyte channels and for whatever reason things are out of order...I do wonder if some of the anxiety and other issues before meds are caused by this.  Yes the med helped me, but underneath the inflammation was still going on as evidenced by the legs burning, the swelling, the times of wheezing, the small vessel disease which my son also has.  I didnt notice it to the degree I did as I got older...just got worse and now as meds go down it is worse again..and the Viibryd does not seem to help that part anyway.

I just wanted to post this for others who may have some issues along this line.

In any case I am grateful for it all...hoping there are answers to that part.  Going to get some food.  Love and hugs to all. 💜

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neroli

Hello dear Rabe

 

It wold be absolutely wonderful if the salt was giving you adverse effects and that cutting it down/out would help you.

 

I'm keeping my fingers crossed, my PF.

 

Neroli 💜

 

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Benzhelp

Hi Rabe,

 

Sorry to hear about salt intolerances. With drugs and withdrawal from tapering, definitely we can get intolerances to many things. I can relate. Perhaps it is the type of salt that is problematic? I found swtching from table salt to sea salts helped with electrolytes and felt healthier for me, of course I cannot say if this might help for others. Take gentle care <3 Healing, Blessings and Love <3

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Rabe

Last night I was crampy and headache...so cant cut it out entirely...jsut going to have to futz until can find a good balance as did with the potassium....I hope so in any case.  Overall I think I am better without so much of it...well the little that I was adding.  Thank you @neroli and @Benzhelp for your thoughts and support!  Hugs to you! 💜

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Rosetta

I hope you rest well tonight, Rabe. -Rosetta

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manymoretodays
Posted (edited)
On 6/12/2019 at 6:17 PM, Rabe said:

Today I got up and going to my daughters.  She had said to me that even in the bad times things were not like this unless it was a drug or something I was reacting to and she had texted she wondered what had changed recently...within month or so.  I looked back in my notes and I had started adding salt to water and salt to my food and eating some chips and popcorn with salt to keep my sodium up as well as the potassium.

In the past I have not done well with salt .... ended up in ER once with a sky high BP after a few days of pork and sauerkraut.  Have reacted to IV's with sodium after births and my accident...and along way had problems related to salt, leg selling, sweat tests all screwy.  I also had a panic episode yesterday that was exactly like as child and teen....was  eerie to recall it so well.

 

Hi Rabe,

Yes, this is eerie. 

I found this basic article, you can switch to professional version too:  Hyponatremia(Low Level of Sodium)

When did you have a head injury?  You mention that sometimes in your narratives.  And often the symptoms are related to brain dysfunction, which might have come about from a head injury.

Are you having the symptoms associated with low sodium when you decide to add salt or eat salt containing things?

The symptoms are in the article.

 

You are not taking any additional medications are you?  Just checking.

 

Sounds like you do better with a low Na+ diet overall.  From your notes and narratives.

 

And again, as we are just peer counselors, this might be an issue that you need to get input on from a doctor.  Perhaps your therapist knows of one who might be a good fit for you now?  I'm not certain that your salt sensitivity, is all related to medications or WD.  As you are now linking it to childhood too.  I don't know Rabe.

 

Tapering plans in the meantime?  I see a suggest from Shep on your benzo, that you might try.  Or it may be time to proceed with that next drop in Viibryd to 8.5 mg. 

 

Glad you had some better time, overall.

 

L, P, H, and G,

mmt


And edited to add in Non-drug techniques to cope with emotional symptoms

" You may also get anxious or depressed about having odd symptoms because you have beliefs that add to your distress, such as a feeling of helplessness or being a failure. Or, you may feel strong emotions as the drugs no longer mask underlying emotional pain. "

You HAVE been making some great headway with some of your emotional distress Rabe.  That is no small feat.  And maybe you will find some additional practices to add to what you already do, with your therapist, and on your own.

(I'm going to be scarcer for about a week or so here, as my Mum is having some issues.  Just thought I'd let you know)

And ((((Rabe)))))

 

 

Edited by manymoretodays
additional comment, link, quote, added

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Carmie

Hi Rabe, 

 

Thanks for popping over to my thread. I hope you’re coping okay.💚

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Rosetta

You are feeling a little bit better?  I read that on the benzo forum.  I'm very happy to see that.  I think.of you every day. (((Rabe))))

 

Rosetta

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neroli

Hello dear Rabe

 

I am hoping you are feeling a little better as the above posts suggests.  It would be lovely to hear that you have settled somewhat.  I will keep my thoughts going in that direction for your.

 

You are truly a brave and kind woman, Rabe

 

love to you

 

Neroli 💜

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Rabe

@neroli @Rosetta Thank you.  

My son and his kids are coming from New York in July and my other son is coming from DC and we all would be together ... been years.  I haven't even seen my newest grand daughter from NY.😥 Makes me sad to think that I may never get there again.  I  am hoping to be able to be well enough to be with everyone so much.  This week has been not good...juset never know from minute to minute and day to day.

My doctor who I went to to ask for a potassium supplement instead of the coconut water and milk because they just are too much.  The coconut water irritates my system.  She wanted to put me on the behavioral unit for an eating disorder!!  She pointed to my bottles of water and coconut water and said THAT isn't normal.  😳  Well the kidney DR is the one who said to do it! I was so shaken that I was teary and just sunk into the chair.  I thought maybe she is right and I was going to go....instead I will not be seeing her again and will try to get a supplement and try it.  The coconut water irritates my bladder  and then I just lose more potassium I think.  I am SO done with these doctors.  Then the therapist was going to get me names of dietician and a doctor to help with sensitivities etc....nevr did and posed posed that last session.  

I continue to struggle to find food to eat that doesnt make me feel worse.  Sometimes I think getting the Clonazepam dosing better might help settle things cause from later afternoon til bed it is pretty awful....but better than the whole day as some are.

But then are days when wonder if the Viibryd makes the spike in anxiety.  Then I remember i had that spike in treatment before the Viibryd and the other doctor said it was WD.  So IDK.

Just a bit lost and sad about my family and the loss of the life I had and my family.  We used to be so close and this has put up a wall.  

Love and hugs to you all!💜

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neroli
10 minutes ago, Rabe said:

Just a bit lost and sad about my family and the loss of the life I had and my family.

 

This is so sad for you, dear Rabe.  I know what you mean about the loss of the life one had.

 

I'm really hoping that things will start to improve bit by bit for you.

 

Lovely to hear that you will be seeing your sons and granddaughter.   :)

 

lots of love to you, keep on keeping on......there are lots of us here with you

 

Neroli 💜

 

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Rabe
On 6/14/2019 at 9:36 AM, manymoretodays said:

When did you have a head injury? 

Thank you for the article MMT.  I had the head injury  after a fall and before my hand surgery and some procedures after which I look back and was not myself at all...manic which is when I decided to sell my home and give my dog away.  Still so sad!!  My head was a mess from the injuries and surgery and pain meds and procedure meds and environmental toxins.  IDK>

I have the low sodium symptoms on and off...dont think the meds help.  I have had sodium issues for a long time as you said.  Not directly related to meds but the stress upends things it what happens. I become salt sensitive and things go haywire with elytes until my system settles... but in general have problems when I eat it...but have to eat some .... hard to know what is going on ... potassium?  Sodium?  Been pretty good lately. YAY!  The warm weather is hard cause things get thrown off easily.  They think the many kidney infections are the root...who knows.

 

No newmeds though I am thinking about a bite of a Claritin now and then because of my food issues.

 

Yes...the afternoon and evening anxiety are getting hard to manage.....so IDK if is V or the CL.  I will do a change in one after my kids come and leave in early July.  Want to try to be with them. 

 

Take care...hope things are going ok for you MMT.💜

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Rabe
1 minute ago, neroli said:

Lovely to hear that you will be seeing your sons and granddaughter.   :)

Oh Neroli....thank you!  I am so hoping to see them...but I never know...and I dont want to go if I am having one of my crazy days when I am pacing or just not good...not good for the kids ... any of them.  No one needs that.

How are you?  I hope some better?

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Gridley

Rabe, thanks for your kind wishes.  Cold is mending slowly but surely.

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Rosetta

(Rabe) I hope everything goes well with your kids.  Holding you in my thoughts. -R

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neroli

Hello dear Rabe

 

I hope you've been able to see your son/s and grandchildren.

 

Also, you mentioned that things seem to be stabilising for you a bit, I really do hope this is the case.

 

Thinking of you, my PF

 

Neroli 💜

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Rabe

I am a roller coaster .... never know what next minute will bring seems.  

Grateful that my daughter and grand daughter came here Monday and we went to the pool.  It wa a lovely day and I cherish those days that I am not a mess when with family.  

Saw the psych doctor yesterday and he is working on the CLonazepam still.  Said there is a liquid...I asked him the name and he didnt know...but he is having trouble making it affordable as if is 10mg in 10cc and he wants to dilute it by putting it in 100ml they would charge me for that amount of the medication I guess.  Thats the gist of it anyway.  I asked him to get me the name of the liquid...he'll forget but oh well.  

We talked about he food issues and he didnt seem to think that was odd which, given the doctors I have seen, is odd in itself.  

He wants to drop the Viibryd to 8.5 next refill.  Its not the tapering...its the effects on food and all that is already shaky that concerns me.  Cant cut back much more than I have.  Potatoes, meat and some green vegetables and the coco water and milk for the electrolytes.  I truly wonder about the coconut water.  

 

Today I got up and felt good, went to PO and stopped at a boutique to look at tops for grandchild.  Sat in the sun a bit.  Went to Y and did very light weights .

Stopped at store but they didnt have what I needed so came back and ate.  Waited til did all this to start my coconut water as sometimes it doesnt seem to sit well.  Ate when back and Tried a piece of melon and then at little after 4 I had an almond a blueberry which I had forgotten about when my daughter called at about 420.  I just was feeling suddenly SO awful at about 415....dizzy, weak, anxious, pale, cold, lip and eyes swelled.  Felt like I was going to faint but didnt.  I just find all this hard to navigate and things change in a second...makes me not want to go anywhere or do anything sometimes.  After that I felt I am tired of dealing with food and electrolytes and meds etc...while so wanting to just live my life.  My daughter invited me there tomorrow but sounded annoyed when she asked me how I was and I said I was not feeling well then...but had an ok day up til then.  Is what is.Things settled at bout 515 in time for the CLonazepam.   

I find that my tongue burns a lot...and the roof of my mouth and my gums.  IDK.  Oh well.  

Still praying to see my New York son and family when they come....his birthday is tomorrow...and his son's is in August so would celebrate those.  But IDK.  I dont want to have these spells in front of them either. Hard.

Love and hugs to everyone!  

Thank you @Rosetta and @neroli for stopping...mean so much! 💜

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wantrelief

It made me happy to read about your lovely time with your family on Monday, Rabe.  It sounds like you are getting at least some good days or parts of days which seems to be an improvement from before....at least I hope so.  I know things are still really challenging and far from "normal" but you are amazing coping through all that you do.  Hoping for more better days for you and that you are able to see your son and family when they are there.  💗WR.

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Rosetta

You had some good hours!  And you saw your girls.  That's wonderful.  I'm really happy to see that.  I can't write much now, but will later. -Rosetta

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Rabe

I saw a new doctor who at least listened.  I have been getting worse and worse with the sensitivities. I had some labs and will see another allergist and GI again for celiac testing and test for SIBO.  I wouldn't do it all except the hope of some insights that might help my son. She thought I might have a kidney infection....there is blood in urine but that has been for while.  Should probably get it checked further...IDK.

My mouth feels as if it is on fire so I had stopped all fruits and most vegetables.  As of two days ago potatoes were added to that list.  My son actually sent me a text saying "does your mouth ever feel like it is burning?  I know that sounds silly.."

I am sad he has my system.

I am now able to eat some sweet potatoes, chicken and lettuce.  My stomach was horrible yesterday,,,it felt on fire.  So I ate just rice and some chicken most of the day...and not much.  The milk and coconut water dont go down well and all the milk does not sit well either.  I dont know how to maneuver through this with the electrolytes, sensitivities, tapering, desires for a life.  My bladder feels on fire so often as well.  I had these things on and off over the years but not like this. 

I feel very sad.  My family is here and I feel so unwell.  I feel ok in AM usually...it is after the meds and food begin...bout hour after...that things go awry.  And the farther I get away from the CL perhaps?  IDK.  Wish he had tapered more evenly.  I dont understand that.  I just feel so unstable in all ways.  I dont even want to see my family....Just resting feels best.  I am so so tired

My best time is late at night...so I am up until 2 often because am calmest usually, feel more hungry  but dont cause of reflux.

I have the 8.5mg Viibryd capsules...will start that soon though my gut screams dont do this!  I cant imagine being thrown off more!!!  There is noting else to take out of my diet.  I stopped the canola oil, so eat no fats.  The milk is 0% cause I cant do the others...and I dont seem to be absorbing nutrients.  I feel myself just wasting away and slipping away and I dont know what to do.  My system is so upended.

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Hibari

Dear Rabe,

 

I feel for you so much as you go through this time. I hear how upended your system is and I empathize.  

 

I know that watermelon is a good source of electrolytes.  It may be a tiny suggestion with everything you are going through but wanted to pass it on. 

 

I too am on a limited diet mainly ground Turkey, chicken thighs, sweet potatoes, berries and sometimes rice cakes.  I am doing the adrenal cocktail twice a day and feel it's helped with the morning adrenaline surges that are due to low cortisol in the morning and the general cortisol freakout during withdrawal. 

 

I am so in your corner Rabe and rooting for you to come through this period. 

 

Hibari. 

 

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wantrelief

Oh Rabe, I am very sorry you are going through all of this.  I am so impressed you keep searching for answers.....that is really hard to do when feeling unwell.  I am thinking about you. 💗WR.

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Rabe

@wantrelief @Hibari Thank you so much for stopping.  I am so grateful!!  

I wish I could eat watermelon...all the melons and berries and fruits are causing issues...a cross reactivity to pollen I guess but who knows.  Thank you for sharing Hibari...Im sorry you are having to limit your diet as well...but it helps to not be alone so to speak.  Love and hugs to you both!  I hope your taper is going ok want relief!!💜

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Rosetta

(((Rabe))). I have no words.  I'm suffering a lot right now, too.  Adrenalin/cortisol surges in the night and morning.  Fatigue.  Missing time with my family, too.  So sad.  Hope to go out today.  Please get some sunshine even if only 10 minutes here or there.  I wish I could help you. - R

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neroli

Hello dear Rabe

 

You're having a rough time, I'm so sorry, especially as you wanted to spend time with your family.

 

I hope you will get some better days soon - it's tough but you keep on doing your very best.

 

Thinking of you and sending love, my PF

 

Neroli 💜

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Carmie

I’m so sorry you’re struggling so much Rabe, sending big hugs🤗

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Rabe

@Carmie @neroli @Rosetta

Thank you for your support.  This is the one familiar pretty safe harbor I have and I am so very grateful!  I think of all of you so with prayers and love!💜

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Rabe

My son and family came last Thursday.  His dad and wife invited themselves to come and stay at my daughters til Saturday ... no one says no.  I stayed away...just too much right now.  My son and family stayed downtown til Saturday and then came to a hotel near here with a huge waterpark and all.  They visited here Saturday a bit and then I went there Sunday and it was so nice to be with them in the park and all at the hotel. There was a picnic that day at my daughters husbands family...I didnt go as by time I would get there it was dinner time and I would have had to come right back.  Saved my energy in hopes of getting to my daughters where my son and family went next on Monday.

I did go and my daughter was to take me to a new psych doctor....when I got there she said my son would take me and she would stay with the kids and his wife...they have been having problems for long time.  I was a mess!  Lots was being afraid and other was my electrolytes were already not good...muscles cramping up, dizzy, weak, anxious.  I was the outlet for the abuse he endured from his father and I did not feel safe with him.  

I was such a mess when got to appt I could not sign my name.  She was young and knew lots about MTHFR, sensitivities, allergies, food issues, vitamins, etc.  She asked me why they did not stop the Viibryd when I reacted to it in treatment and told me to stop it.  I told her what happened when I tried to just quit faster.  She said she feels doing it so slowly as I have been only prolongs the agony and stress to my system.  I do wonder that myself but also know my system is just getting by.  She cannot have samples....some regulation as she is not private...so said to get off VIibryd and then come back.  Other thing she asked was why Clonazepam dosing is so unbalanced.  I said that was how he tapered it before i got so ill.  She said it is ridiculous to live like this and said that I could go to 1mg and take .25 4X day or space what I have better to help keep my system balanced...that that alone might help the sensitivities and all.

 She told me to get an Everlywell food sensitivity panel online order, take magnesium glycerinate lysinate 100my BID, magnesium L Theonate s tabs bedtime, Mealatonin with L Theanine 1 to 3 tabs at bedtime, Vitamins D 4,000 IU daily, Baby and Me 2 vitamins daily, to stop dairy especially and get Potassium glucobate tabs.   I left completely overwhelmed.  Obviously she is overbooked with psych shortages, was so kind of her to see me, but I cannot just suddenly start all these things from past history I have never done well with supplements and once was B vitamin toxic but I dont think I was taking anything much.

 

We had a nice day and a nice evening.  I stayed over and did ok.  I left the next morning as I was anxious.  I am grateful but also see how naive I was to think I could make everything ok for my family after their dad and his abuse left. There is a huge sadness as well.  My son was on Buspar and was better as his anxiety was better,  He apparently just stopped it CT. I noticed he is drinking more again and more irritable.  Grateful but sad.  

 

I did start the Claritin because I was reacting so badly to everything...1/2 of a 10mg daily.  It has helped that I think...but does seem to affect other meds as my ears are ringing again and all.  Seems to throw things off.  Hard to ever feel balanced.  The doctor had recommended it as well so....IDK.  I could take it every other day.  My mouth burns everyday when I start eating and stays that way all day.  I dont care about eating and wonder if are any answers.  I am so grateful to have met my newest grand daughter already 1 1/2 and to see the 5 year old grandson again.  To see all 3 playing at my daughters was so lovely.  Wont forget it.  Love and hugs to all.  Will be starting a Viibryd taper next week...with already eating only potatoes and meat and lettuce I am not sure how to manage this.  Love to all!!!  💜

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neroli

Oh, dear Rabe, the appointment with the psychiatrist does sound overwhelming - and all the supplements she has suggested!  I'm glad you know that you haven't done well on supplements, you don't need to go down that road again.

 

I'm glad you got to spend some time with your family and made the wise decision to stay away from situations that would have been too much for you.

 

Thinking of you, my PF and sending lots of love

 

Neroli💜

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Rosetta

HI Rabe, 

 

Ohh my.  The psychiatrists don't know what they are dealing with when it comes to these drugs, but at least the word is getting out.  To late for us.  I can see why she might think Viibryd could be stopped faster.  She doesn't know the risk.  We do.  As for her suggestion on the benzo, again, it seems so simple to her.  If only it were that simple in reality.  Of course you can't take these supplements.  I saw a doctor today, and I told her that I'm very sensitive to all medications now.  That's just a fact.  

 

I'm really glad that you were able to see your son and his children!!  You were so worried that you couldn't do that, but it happened.  I know the past is all wrapped up in the present, but you were not the cause of that problem, Rabe, you were a victim.  Your children love you.  You did the best you could, and they want to see you.  That's a testament to the bond you have with them.  

 

A big hug to you.  I'm very impressed that you were able to stay overnight!  Love, Rosetta

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wantrelief

Hello Rabe -  Thank you for your sweet message on my thread. It sounds like you have had a lot going on with seeing your family and then enduring the psychiatrist appointment (which sounded very overwhelming). You got through it all and took care of yourself when you needed to which is not always easy to do with family. I am thinking about you and hope you are doing ok.  💗WR.

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Rabe

@neroli @Rosetta @wantrelief

  • Thank you for your support always!! It means so much!  I just feel overwhelmed with these food issues, oral allergy, cross allergies, meds, doctor recommendation that I feel I cannot follow....I wish it were that easy.  

Today I had therapist appt which went well...1000 AM before any meds or food and I can actually understand what she is saying and interact.  When started meds and food things went downhill and tonight I feel SO tired, eyes irritate, trying applesauce fired up my stomach and irritated my eyes.  Apparently if the problem foods are cooked it is ok....not for rme though I sure was excited.  I miss my fruits, veggies and nuts but have to be grateful to eat anything.  Just feel sick tonight.  Hoping tomorrow will be better.  Much love and hugs to all.💜

 

  

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neroli

Hello dear PF

 

I'm hoping tomorrow will be better for you as well.  What a bundle of issues you have to deal with.  Wish that food thing would get itself sorted.  Though I did watch a video of a bloke in Benzo protracted WD/damage and he said he could only eat chicken and squash and tolerate it.

 

Sending love and hugs and hopes for easing up of your symptoms.

 

Neroli 💜

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Rosetta

Hey, Rabe,

 

You are feeling better!  I'm so happy to see that!  I read your benzo posts, too.

 

No more GI procedures!!  You are right that that was what really destabilized your system.  I hope you can get the Viibryd taper done without another GI procedure or any procedure for that matter.  

 

You can do this!!  I know you can.  You may feel much better just because you reduce your dose.  Every little bit helps.  

 

I assume you are washing all your fruits and vegetables.  Even the organic?  The allergy issue is so frustrating.  I think I am allergic to my own hormones.  It's so obvious that I struggle more when I have the cycle peaks every two weeks.  I hope everything is finally calming down for you.  

 

I would use Claritin very sparingly as I think it creates a dependency, but I'm glad you get some relief when you take it.  

 

All my love, Rosetta

 

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manymoretodays
Posted (edited)

Hi Rabe!

And I don't if you guys noticed, but look, we are, some of us, designated Vets now.  Veteran Contributors.   In other words, we've earned our t-shirts or something. B)  I like it.  Fun.

 

So Rabe, where you at now with the Viibryd taper?  I too, saw your post to Shep, over in the benzo forum.  And scanned some other mentions, of another taper, on the Viibryd.

Good to see that you are getting on in some more family time too.  I know that has been hard for you, in the past.

 

And good to be getting after some of these other medical issues as well.  So hoping you can just get down to one or two trusted doctors, or other, for help now.  It's so hard when anyone has several different pros giving advice......often unaware of the other pros advice.  I see this with my Mum a lot.

 

Yes.  Do go easy with the Claritin.  It looked like you might be doing a 5 mg dose?  I was thinking a crumb might do the trick myself.  Potentially, I mean it could go paradoxical, and it can, and probably does interfere, or alter your other medication/drug absorption too.  So that's what I think on that.

Anything clear about this, or anything else in your notes Rabe?  I know you did say you kept them, I think.  The daily notes for yourself and then to share here when needed.

 

Okay, hope it's a good one for you today Rabe.

Best,

L, P, H, and G,

mmt

 

 

 

 

Edited by manymoretodays
commas and brief additional for clarity

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