Post Benzo Protracted Withdrawal Support Group

Hi Mal and mmir,

 

My vitamin D level was 17 two years ago when I was in detox.  I had it tested last April and it was low then, too.  I think 22.  I don't remember.

 

But in detox she had me taking 4,000 IU of D a day for three months.  I was too early and sick in withdrawal to know if it was affecting me at all. 

 

Anyway, I tried to take vitamin D again about 18 months out and it did seem to affect me negatively.  When the doctor wanted me to take it again last April I told her it made my symptoms worse and she said she had never heard of that before.  As if I was making it up. 

 

Also, just about two weeks ago I started taking tums to help with PMS.  Now I'm wondering about the calcium deal.  I take about 1400mg at night and it really seems to help with anxiety and helps me fall asleep.  Now I'm worried about hypercalcemia!  UGH!  I need to get off the internet and not google anything anymore.  It does me no good! 

Yes mmir! I really believe that is what is going on! I have hypothyroid too so my D will be low. My calcium is normally 10.1 on previous labs and now shot as high as 10.9 which just looked up would be hypercalcimia. Labs two weeks ago had me down to 10.6 probably why I'm feeling like some of the symptoms have gone. Stil have fatigue, weakness, not a great appetite but forcing myself to eat. Been drinking lots of water. Do you know how long it takes to get feeling good or is everyone different?oh yes anxious too! You explained that well! Thanks for responding!is yours related to taking vitamin D?

 

mal

L123 I don't believe calcium will cause you problems. The vitamin D raises the calcium blood levels. My understanding is it is two different things. Don't worry about calcium supplements just worry about the D.

 

mal

Yes mmir! I really believe that is what is going on! I have hypothyroid too so my D will be low. My calcium is normally 10.1 on previous labs and now shot as high as 10.9 which just looked up would be hypercalcimia. Labs two weeks ago had me down to 10.6 probably why I'm feeling like some of the symptoms have gone. Stil have fatigue, weakness, not a great appetite but forcing myself to eat. Been drinking lots of water. Do you know how long it takes to get feeling good or is everyone different?oh yes anxious too! You explained that well! Thanks for responding!is yours related to taking vitamin D?

 

mal

mal, when I had hypercalcemia my vitamin D was in the normal range and I was not taking any vitamin supplements. I don't know what the levels are now in withdrawal since I've been avoiding doctors. My hypercalcemia was not severe but it was enough to worry my endocrinologist years ago (don't remember the exact number), but back then I just ignored it since I started feeling better after a while (dizziness went away).

 

L123, do not worry about hypercalcemia. The parathyroid hormone is the one that controls blood levels of calcium. In most people it works perfectly fine and no matter how much calcium they take the calcium goes into the bones and blood levels remain normal. In some people the parathyroid gland does not work perfectly and so the calcium stays in the blood instead of going into the bones. When calcium stays on the blood there is a risk of it accumulating in the organs. My mom had the same issue with high blood calcium levels and now has osteoporosis. My endocrinologist says it's sometimes hereditary and it predisposes me to osteoporosis...but I just don't worry about it.

 

Note that I personally do not understand the interaction with vitamin D and calcium. I know vit. D helps with calcium absorption--that's the extent of my knowledge.

Thanks again. I do know mine is caused by the vitamin D since the labs has shown the rise as i was taking it and the decrease since I stopped. I love the buddies and the support we all give each other.

Thanks!

 

mal

Thanks again. I do know mine is caused by the vitamin D since the labs has shown the rise as i was taking it and the decrease since I stopped. I love the buddies and the support we all give each other.

Thanks!

 

mal

Agree! I'm glad I read your post because it reminded me of the link between vit D and calcium so I now know I have to avoid the vit D (I was tempted to try it a while ago but now I see it's a bad idea in my case).

Donny,

 

Yes it builds and then all hell breaks loose and the anxiety takes over. I am still in the same bad phase. Can't seem to find that window I'm looking for.

 

Tarheel

Just a quick note on Vit D which I cannot tolerate either in supplement form - just had my level taken after spending 15 minutes per day in noon sunshine - my level has gone up to 88 from 39 in a few months

 

Polenta

Polenta, I'm not doing very well. Been up since three with nervousness. This Vit D really messed me up. Last labs I was 26 with the D and 10.6 calcium. I got as high as 10.9 so was hypercalcemia. That was three weeks ago. This is just crazy! Not much support. I see an endocrinologist on Wed. Idk what to expect? Can you please tell me what some of the things you experienced from the D. I will never take it again. I know you said it could take awhile just need to know this will end. I start to do better or it seems and then fatigue and nervousness set in. Like I said even get the shakes and jitters know and then.

 

mal

I will look for my notes and get back to you mal

 

I had nausea, fatigue, extreme suicidal ideation, red lumps in the skin around my eyes, shakes, blurred vision, extreme fatigue, nusea, sweating, chills, a metallic taste, breathing problems,  runny nose, worse insomnia. Bone pain, thirst, sore eyes, urinary incntinence I already had a lot of these sx as wd symptoms, but they became a million times worse.  the characteristic Vit D symptom was the red lumps around my eyes which arrived the day after I took the vit d and stayed with me for about 18 months.

 

Oh I am so sorry for you and for me! I am still experiencing lots of fatigue, muscle weakness and shakes every now and then. I had all that you had but not suicidal. Depressed and crying at times. I am 37 days off the D. It reminded me so much of benzo withdrawl. Thank you so much! I hope you are stabilizing and feeling much better these days. Oh and your D levels are very encouraging.

 

mal

Just a quick note on Vit D which I cannot tolerate either in supplement form - just had my level taken after spending 15 minutes per day in noon sunshine - my level has gone up to 88 from 39 in a few months

 

Polenta

 

I've been doing the same thing all summer.  Sitting outside in the noonday sun for about half an hour.  Hopefully my vitamin D levels are okay now.  But I'm not sure what to do about the winter.

 

I read that anyone who lives north of Atlanta will not get strong enough sun to boost vitamin D levels in the winter. 

 

Also, if a fair-skinned person sits out in the midday summer sun for 10 minutes in a tank top and short and no sunscreen, she will get about 10,000 IU of vitamin D. 

What is a normal Vitamin D level?  thanks for the info about Vitamin D.  I was going to try it but am thinking otherwise now!

Hello all, I've posted on behalf of my wife before using my own thoughts and questions, but she finally asked me to post something she wrote out herself.  This is from my wife Lisa who has one remaining symptom, "burning in the throat, constantly":

 

        "After taking 5-10 Mg's of Valium a day for 14 months, I went cold turkey, not knowing I was supposed to wean.  I had many w/d symptoms, but had reflux (regular and larynx) for 8 months.  At that point, I started with terrible insomnia so, unfortunately, began to take Ambien.  The lower reflux problems went away, but the larynx reflux remained.  I then realized that this could be due to the ambien.  This was after 9 months when I weaned off it. The reflux began to greatly improve, however after 8 months of being off the ambien, I developed globis (that feeling of a golf ball being stuck in your throat).  Because of this, I made the unfortunate decision to go back on the Valium for about 5 months.  I started taking 10 Mg's a day and the globis went away, however after 6 weeks (tolerance) the larynx reflux came back.  I then decided to wean off the Valium, which I did, and it had been 17 months but the larynx reflux has not gone away.  My stress levels are thru the roof after more than 3 1/2 years since going cold turkey and never feeling good.  I just want to know that eventually this larynx reflux will resolve itself.  It is hard to calm down when I feel so horrible.  There are times when if does feel is was going away, only to have it come back.

      I was 45 years old when all this began, and on the small petite side (5'1", 110 pounds).  I have never had gastro problems before going cold turkey.  I did have an endoscopy after the cold turkey and nothing abnormal was found. 

      Has anyone recovered from, or know anyone who has recovered from a similar situation?  Thank you for reading...."

 

Thank you all for reading...Bobo

3 years off of a c/t and still have lots of symtoms wonder if i'll ever be the same

Well I am joining this group unfortunately, I am 15 months out and maybe 50-60% healed.  It is still very stressful trying to function day to day, but it is better than it was. I feel I am in this for the long haul now since I have not had any symptoms disappear since about 10 months. I get a window maybe 1-2 days a week if I'm lucky.

Just a quick note on Vit D which I cannot tolerate either in supplement form - just had my level taken after spending 15 minutes per day in noon sunshine - my level has gone up to 88 from 39 in a few months

 

Polenta

 

 

I read that anyone who lives north of Atlanta will not get strong enough sun to boost vitamin D levels in the winter. 

 

 

Sounds like you need to move down here Leslie .

Hello all, I've posted on behalf of my wife before using my own thoughts and questions, but she finally asked me to post something she wrote out herself.  This is from my wife Lisa who has one remaining symptom, "burning in the throat, constantly":

 

        "After taking 5-10 Mg's of Valium a day for 14 months, I went cold turkey, not knowing I was supposed to wean.  I had many w/d symptoms, but had reflux (regular and larynx) for 8 months.  At that point, I started with terrible insomnia so, unfortunately, began to take Ambien.  The lower reflux problems went away, but the larynx reflux remained.  I then realized that this could be due to the ambien.  This was after 9 months when I weaned off it. The reflux began to greatly improve, however after 8 months of being off the ambien, I developed globis (that feeling of a golf ball being stuck in your throat).  Because of this, I made the unfortunate decision to go back on the Valium for about 5 months.  I started taking 10 Mg's a day and the globis went away, however after 6 weeks (tolerance) the larynx reflux came back.  I then decided to wean off the Valium, which I did, and it had been 17 months but the larynx reflux has not gone away.  My stress levels are thru the roof after more than 3 1/2 years since going cold turkey and never feeling good.  I just want to know that eventually this larynx reflux will resolve itself.  It is hard to calm down when I feel so horrible.  There are times when if does feel is was going away, only to have it come back.

      I was 45 years old when all this began, and on the small petite side (5'1", 110 pounds).  I have never had gastro problems before going cold turkey.  I did have an endoscopy after the cold turkey and nothing abnormal was found. 

      Has anyone recovered from, or know anyone who has recovered from a similar situation?  Thank you for reading...."

 

Thank you all for reading...Bobo

 

Are you taking any PPI like Prilosec or zantac for the reflux?  Best to avoid coffee, soda, fried foods and not to eat two to three hours before bed.  What does your gastro doc say? 

 

Vertigo

Just a quick note on Vit D which I cannot tolerate either in supplement form - just had my level taken after spending 15 minutes per day in noon sunshine - my level has gone up to 88 from 39 in a few months

 

Polenta

 

 

I read that anyone who lives north of Atlanta will not get strong enough sun to boost vitamin D levels in the winter. 

 

 

Sounds like you need to move down here Leslie .

 

I'm TRYING!!  Damn housing market.  Grrr.  Cannot sell my condo or I would've been in Austin, TX TWO YEARS AGO!  Oh well.  I'm here for a reason, I guess.  But I'm putting my condo back up on the market as soon as I find another job and am able to keep it without symptoms flaring up keeping me from being able to work. 

 

Atlanta would be nice.  That's actually where I was born.  I've been back to visit a few times.  But I'm drawn to Austin for some reason.  Mostly the weather but I think it'd be a fun town, too. 

 

Not looking forward to another winter here.  Yuck.

Just a quick note on Vit D which I cannot tolerate either in supplement form - just had my level taken after spending 15 minutes per day in noon sunshine - my level has gone up to 88 from 39 in a few months

 

Polenta

 

 

I read that anyone who lives north of Atlanta will not get strong enough sun to boost vitamin D levels in the winter. 

 

 

Sounds like you need to move down here Leslie .

 

I'm drawn to Austin for some reason.  Mostly the weather but I think it'd be a fun town, too. 

 

 

Don't move to Austin for the weather, at least not mid May to September!  Then again, you're used to the humidity probably. Lots of mold and allergies in Austin too, but it's big allergy place here in Atlanta too Austin definitely is a fun town and I love visiting

 

V

::)I am 2 yrs and 5 day's off Diazepam having switched over from Clonazepam but still have awful pins & needles in face hands feet, burning sensations in feet legs, muscle spasms in legs mainly thighs, hot stabbing pains in leg muscles, numbness in face, palpations, insomnia 3-5hrs, balance probs like I'm walking on board ship, tight throat when talking to people, and shakes when I want to scream,

these happen constantly but are worse of an evening, The best thing that get's me through each day is to walk 4-6hrs aday. Sounds mad but walking along the coast path in the wind,rain & sun makes it seem easier looking for seals magic.Life for 20yrs was a sedated excistence, never to be repeated!

Hot weather definately affects symptoms...it caues

::)I am 2 yrs and 5 day's off Diazepam having switched over from Clonazepam but still have awful pins & needles in face hands feet, burning sensations in feet legs, muscle spasms in legs mainly thighs, hot stabbing pains in leg muscles, numbness in face, palpations, insomnia 3-5hrs, balance probs like I'm walking on board ship, tight throat when talking to people, and shakes when I want to scream,

these happen constantly but are worse of an evening, The best thing that get's me through each day is to walk 4-6hrs aday. Sounds mad but walking along the coast path in the wind,rain & sun makes it seem easier looking for seals magic.Life for 20yrs was a sedated excistence, never to be repeated!

Exercise definately makes a world of difference for me. I play basketball 2-3 times per week and the feeling after is always one of excitement and calmness at the same time.  Hang in there...I'm 3 years off myself and the last 6 months have been the best thus far...

 

Ed

Hi Guys, I am just wondering if anyone taking any medecine for bloating, it seems that this sxs is giving me a hard time, I know that when I deviate from my diet trying to even experiment with more varaity of food I get bloated for days, I just want to take something for temproray relieve in set backs, i was thinking Gas X, anyone tried it or tried anything for bloating (benzo belly) I am almost 23 months off, not taking anything since I quite, only some pain relieve (paracetamol) for my GI track and cramping on accasions and limited doses not more that 2 a day thanks

Hi Guys, I am just wondering if anyone taking any medecine for bloating, it seems that this sxs is giving me a hard time, I know that when I deviate from my diet trying to even experiment with more varaity of food I get bloated for days, I just want to take something for temproray relieve in set backs, i was thinking Gas X, anyone tried it or tried anything for bloating (benzo belly) I am almost 23 months off, not taking anything since I quite, only some pain relieve (paracetamol) for my GI track and cramping on accasions and limited doses not more that 2 a day thanks

 

Cutting out all sugars (especially artificial sweeteners) and all dairy helped me a lot.