Jump to content

7 months off feels like I’m back in Acute!!


[jo...]

Recommended Posts

I hit my 7 months off this week and lately it feels like I’m back in the Acute phase.

I had horrible burning on my head, arms and lower legs since I went to detox after an attempted 4 month taper. You can read my blog for more info on that.

 

Lately my burning seems to be worse, and the anxiety plus fear has really ramped up.

I have the shaking over my body almost like shivering; especially in the morning.

 

Today I had a vanilla ice cream waffle cone after church and woke up from a small nap, with a major hot flash and all of the above? Could an ice cream cone cause such a reaction this far out?

 

I’ve had very little sweets since detox. I also had a little bit of CBD isolate that I took before I went to church. It’s been a long time since I’ve had CBD as well.

I’m wondering if that caused a hot flash too?

 

I’m just so exhausted with all this and was really hoping I would turn a corner by now.

I realize it’s still early but why does it seem to be worse? The anxiety, fear of the fear, burning, shaking, myclomic jerks, tinnitus, and now hot flashes is just all so overwhelming and merciless.

 

My anxiety is so heightened because of the burning and pain. The shaking and jelly legs are just nuts.

I’m trying to tell myself that I’m healing but these symptoms just keep increasing. It feels like Acute all over again.

 

I’m burning and shaking so much right now I don’t know what to do anymore. Seems like im having so much more pain of the intense burning. It feels like someone rubbing my skin with a grill brush. Just absolutely so painful and unforgiving.

 

I’ve had very little windows. I pray for mercy everyday.

 

I hope I haven’t set myself back with the ice cream cone and CBD isolate that I had today.

 

Feeling such despair today.

 

I’m so sorry that we are all going through this journey.

 

Lord help us. Bless you all.

 

 

 

Link to comment
Share on other sites

Burning and tingling is one of the most common symptom in wd throughout the body the skin muscles joints.  You are only 7 months off really early in wd.  Type burning in the search bar it definitely comes up.  Distraction and acceptance is key. You will get better in time. 
Link to comment
Share on other sites

I couldn't even eat blueberries during my first year, let alone ice cream.  I know 7 months seems like a long time, but it isn't.  Give it more time and try to eat healthier.  Focus on plant based whole foods and your body will thank you.  Take note of what creates more symptoms and avoid them for now.  You can try those foods again later as it does get better.  I ate a lot of peanuts, but get them in the shell to avoid overeating.
Link to comment
Share on other sites

It could be all of the above. CBD works for some, you just have to keep in mind that CBD does influence GABA receptors so it's possible you reved up symptoms.

 

The ingredients in that waffle come could of don't the same, from the glutan, the sugar content which revs the Nervous system up depending on how sensitive it's become,artificial sweetener and flavoring, the cream to the lactose can all play a role. Again many of us are in a super chaotic and ridiculously sensitive position where most things which didn't effect us prior seem to kick our a**es. Now I wouldn't go as far as jumping the gun to say you set you're self back, I too experience burning in my cheeks, scalp, arms, legs and sometimes in my intestinal track if I eat the wrong thing. But it often goes away by the end of the day to 2 days after wards. I have a theory that once the body has taken care of the symptoms the first time, sure it can come back and nag you until you fully recover... But like getting the same virual strain within a year the body has a already created antibody ready to go. Now obviously there's no antibody but the body knows how to handle things.just this play out and please stay away from any negative thought which trust me I know it's hard.

Link to comment
Share on other sites

JordanJack,

 

I'm so sorry for your suffering.  I'm 12 1/2 months post jump and going through stretches of days 2-3 at a time where I am intensely experiencing the burning and tingling and tight chest as well.  It's very uncomfortable and I'm sorry you are dealing with it. Many of us are right there with you though.  Reading success stories where people say the burning stopped helps me immensely.  I sometimes can find no rhyme or reason to my tingling. I have a clean diet (no gluten, very little sugar or preservatives of any kind, no red meat or pork) and I don't take any meds except once in a blue moon a Tylenol maybe. If it helps you, I do have stretches of a few days at a time where there is no burning or tingling.  It helps me to know my body does know how to behave properly.  Hang in there.  You can do this.

 

Hugs,

Helen

 

Link to comment
Share on other sites

Hey there!!! It took me quite a while to be able to eat normal again. 

Just in general really. At least into the end of 1st year.  Definitely by 18 months I could eat everything again. Year 2 even better. Now I'm at year 3 and I eat sugar, and have even been able to drink a small margarita or mojito. Small mind you! But still!!!!! I definitely couldn't have that 2 years ago.

I'm so sorry!!!!! It is awful when you are in it, but it gets better!!!

Link to comment
Share on other sites

Burning and tingling is one of the most common symptom in wd throughout the body the skin muscles joints.  You are only 7 months off really early in wd.  Type burning in the search bar it definitely comes up.  Distraction and acceptance is key. You will get better in time.

 

Thank you Upperleft. Yes, it truly is an awful symptom to bear and I’ve found some similar posts. Lately, it feels like stinging ants and so very difficult. Working from home is a good distraction. I hope to turn a corner soon. Thank you for reaching out.

Link to comment
Share on other sites

8 mo still have burning, still react to sugar and still get hot flushing.

 

Hi Foxclover,

I’m so sorry that you are experiencing the same. How very distressing these symptoms can be. It’s a daily battle both physically and mentally when the pain brings me to my knees. I pray our healing and restoration is soon complete. Thank you for your encouragement.

Link to comment
Share on other sites

I couldn't even eat blueberries during my first year, let alone ice cream.  I know 7 months seems like a long time, but it isn't.  Give it more time and try to eat healthier.  Focus on plant based whole foods and your body will thank you.  Take note of what creates more symptoms and avoid them for now.  You can try those foods again later as it does get better.  I ate a lot of peanuts, but get them in the shell to avoid overeating.

 

Thank you Benzobegone,

Yes, I really have to be so careful about what I eat as well. I eat Whole Foods and also spinach, boiled eggs, healthy fats.  I haven’t had restaurant food since I jumped. Peanut butter and bananas are great too. It’s just incredible how certain foods can cause issues.

I hope you are well. Thanks for reaching out.

Link to comment
Share on other sites

It could be all of the above. CBD works for some, you just have to keep in mind that CBD does influence GABA receptors so it's possible you reved up symptoms.

 

The ingredients in that waffle come could of don't the same, from the glutan, the sugar content which revs the Nervous system up depending on how sensitive it's become,artificial sweetener and flavoring, the cream to the lactose can all play a role. Again many of us are in a super chaotic and ridiculously sensitive position where most things which didn't effect us prior seem to kick our a**es. Now I wouldn't go as far as jumping the gun to say you set you're self back, I too experience burning in my cheeks, scalp, arms, legs and sometimes in my intestinal track if I eat the wrong thing. But it often goes away by the end of the day to 2 days after wards. I have a theory that once the body has taken care of the symptoms the first time, sure it can come back and nag you until you fully recover... But like getting the same virual strain within a year the body has a already created antibody ready to go. Now obviously there's no antibody but the body knows how to handle things.just this play out and please stay away from any negative thought which trust me I know it's hard.

 

Thank you for your encouragement Mustang. Yes, I have to be really careful as well.  I’ve been too afraid to eat restaurant food and certainly no fast food. I’ve had this burning for so long since the gaba receptors were hammered down. I’m pretty much hypersensitive to so much. I’ve had bloodwork 3 or 4 times just to make sure all is well. Had an MRI as well.  It’s just nuts what the benzos have done, even short term. I hope you well. Thank you for your encouragement. I appreciate it.

Link to comment
Share on other sites

JordanJack,

 

I'm so sorry for your suffering.  I'm 12 1/2 months post jump and going through stretches of days 2-3 at a time where I am intensely experiencing the burning and tingling and tight chest as well.  It's very uncomfortable and I'm sorry you are dealing with it. Many of us are right there with you though.  Reading success stories where people say the burning stopped helps me immensely.  I sometimes can find no rhyme or reason to my tingling. I have a clean diet (no gluten, very little sugar or preservatives of any kind, no red meat or pork) and I don't take any meds except once in a blue moon a Tylenol maybe. If it helps you, I do have stretches of a few days at a time where there is no burning or tingling.  It helps me to know my body does know how to behave properly.  Hang in there.  You can do this.

 

Hugs,

Helen

 

Thank you so much Helen. I appreciate your thoughtfulness and kind words. I’m so sorry that you are having to endure the same. The burning on my head is the worst. It feels like an army of ants stinging my scalp; and also my arms and lower legs. I don’t quite understand it all, but I’ve read it’s all the cortisol and gaba receptors trying to reach balance again.  It’s truly a difficult symptom to bear.

I pray for our renewed strength and healing. I’m so grateful for the support here and the success stories. Thank you for your your encouragement Helen.

Sending you big hugs back. Bless you.

Link to comment
Share on other sites

Hey there!!! It took me quite a while to be able to eat normal again. 

Just in general really. At least into the end of 1st year.  Definitely by 18 months I could eat everything again. Year 2 even better. Now I'm at year 3 and I eat sugar, and have even been able to drink a small margarita or mojito. Small mind you! But still!!!!! I definitely couldn't have that 2 years ago.

I'm so sorry!!!!! It is awful when you are in it, but it gets better!!!

 

Thank you SouthernBelle,

You’ve been such a great support to me.  I’m so glad to know that in time our bodies can manage other foods. I’ve been really careful, no msg, no caffeine, no fast food or restaurant food. Very little sugar. I think I was in a wave at the time and the ice cream was not something I should have eaten. I won’t do that again. :)

I’m so glad you are doing much better. I know you’ve shared with me in other posts that the burning does cease. I pray it does for me soon.

Thank you for your help and encouragement. I appreciate it so much.

 

Link to comment
Share on other sites

JordanJack,

 

I'm so sorry for your suffering.  I'm 12 1/2 months post jump and going through stretches of days 2-3 at a time where I am intensely experiencing the burning and tingling and tight chest as well.  It's very uncomfortable and I'm sorry you are dealing with it. Many of us are right there with you though.  Reading success stories where people say the burning stopped helps me immensely.  I sometimes can find no rhyme or reason to my tingling. I have a clean diet (no gluten, very little sugar or preservatives of any kind, no red meat or pork) and I don't take any meds except once in a blue moon a Tylenol maybe. If it helps you, I do have stretches of a few days at a time where there is no burning or tingling.  It helps me to know my body does know how to behave properly.  Hang in there.  You can do this.

 

Hugs,

Helen

 

Thank you so much Helen. I appreciate your thoughtfulness and kind words. I’m so sorry that you are having to endure the same. The burning on my head is the worst. It feels like an army of ants stinging my scalp; and also my arms and lower legs. I don’t quite understand it all, but I’ve read it’s all the cortisol and gaba receptors trying to reach balance again.  It’s truly a difficult symptom to bear.

I pray for our renewed strength and healing. I’m so grateful for the support here and the success stories. Thank you for your your encouragement Helen.

Sending you big hugs back. Bless you.

 

JordanJack,

 

You are so welcome.  And you are definitely not alone.  It sounds like you and I have very similar symptoms. The tingling head and face is really rough as is the full body tingling.  It's almost nauseating sometimes, isn't it?  And kind of disorienting.  I just made myself walk a mile on my somewhat hilly road and try to stay loose despite the symptoms.  Not easy but I did it! I hope your day goes better today.

Link to comment
Share on other sites

JordanJack I am in the same boat as well. Burning/tingling, especially in my forehead and top of head and in arms and legs along with heart palpitations. Also, ear ringing. (Right ear ringing got me on this awful drug in the first place)

 

I am 5 1/2 months from a klonopin jump. Completely understand about the food. I have learned the hard way many times. You are right, no caffeine (no coffee, darn it), no fast food, low sodium, low sugar. My diet mainly consists of coconut-based yogurt, Birds eye frozen low sodium mixed vegetables and precut grilled chicken. Side benefit is I lost 10 lbs but not the way I wanted.

 

I like you was hoping by this time it would improve. Mine has improved some but still aways to go. I keep telling myself I got this far (quit ambien, lunesta, as well as klonopin) (still on 6.5 remeron and melatonin) and that it will get better as many buddies have said it is still early and will take time.

 

It is the hardest thing I have ever had to do. For all maybe we should create a burning/tingling support group thread, (if not one already there) so we can continue to educate, inform, and support each other.

 

Keep telling yourself it will get better and we all on this forum can support/remind each other of it. I have had a hard post jump time but trying to think positive.

 

well wishes and thoughts,

 

seeking

Link to comment
Share on other sites

JordanJack I am in the same boat as well. Burning/tingling, especially in my forehead and top of head and in arms and legs along with heart palpitations. Also, ear ringing. (Right ear ringing got me on this awful drug in the first place)

 

I am 5 1/2 months from a klonopin jump. Completely understand about the food. I have learned the hard way many times. You are right, no caffeine (no coffee, darn it), no fast food, low sodium, low sugar. My diet mainly consists of coconut-based yogurt, Birds eye frozen low sodium mixed vegetables and precut grilled chicken. Side benefit is I lost 10 lbs but not the way I wanted.

 

I like you was hoping by this time it would improve. Mine has improved some but still aways to go. I keep telling myself I got this far (quit ambien, lunesta, as well as klonopin) (still on 6.5 remeron and melatonin) and that it will get better as many buddies have said it is still early and will take time.

 

It is the hardest thing I have ever had to do. For all maybe we should create a burning/tingling support group thread, (if not one already there) so we can continue to educate, inform, and support each other.

 

Keep telling yourself it will get better and we all on this forum can support/remind each other of it. I have had a hard post jump time but trying to think positive.

 

well wishes and thoughts,

 

seeking

 

Hi Seeking,

Thank you for your encouragement. My goodness this burning fire is something that nobody can understand unless they’ve been through it. It’s been a total of 10 months for me which includes the interdose withdrawals after 2.5 months use, then the 4 month attempted taper, then detox, after which the furies of the 7th circle of hell let loose.

 

It’s absolutely the most inhumane thing to go through such suffering. It’s not a muscular pain, nor a little discomfort; it’s like being dipped in butter and put in a deep fryer. It’s hard to even conceive the pain unless it has been experienced.  The worst part is it comes from within and there is little help.

 

I ended up going on gabapentin to help with the burning nerve pain on my head, lower legs, arms and shoulders. I didn’t want to get on another med but I had to be able to function and work. It takes the edge off a little, but not much. I’ll taper once I’m healed. The gabapentin doesn’t hit the same receptors as benzos, as it is a calcium channel blocker which helps to control the glutamate storm, and thus allows the space for the brain to heal and for our gaba receptors to regulate. Many people think that because the word “gaba” is part of the word gabapentin, that it hits those receptors, but it doesn’t. In a round-about way, it helps the Gaba to be restored. But it takes sooooo long doesn’t it?

 

Seeking, I have been in my knees for months begging for mercy.  I’ve been careful about food too, except for the ice cream I had. I’ve been too nervous to eat restaurant food and definitely no fast food.

I eat frozen fruits and lots of spinach in smoothies with coconut milk. 

 

I think our cortisol and adrenaline are ramped up 25/7. I also get the shakes and increased anxiety because of the pain. Sometimes I wonder how I’m going to get through this.

I miss my beautiful life and pray we turn a corner soon.

 

I know you have struggled because we are enduring the same. I understand and I’m so sorry. You will get through this. You’ve been through so much too.

I think we should start a “Burning, Stinging, and Tingling” group too!

It would help so much to encourage one another.

Here’s sending you hugs.

Bless you!

Link to comment
Share on other sites

If you all start a Burning Man group, count me in.

 

The gabapentin I was prescribed for the back pain does take the edge off the nerve/fear pain a little. Before that I really thought I was going to turn into nothing but a pile of cinders, like special effects in a movie. It's so hard to believe it could be that severe and just go on and on.

 

I splurged on AC and running the ceiling fans until my home was like a meat locker. And I don't like the cold.

 

I'm doing better now than I was. Gabapentin will be a bridge to cross, I have no doubt.

 

Liz

Link to comment
Share on other sites

JordanJack,

 

I'm so sorry for your suffering.  I'm 12 1/2 months post jump and going through stretches of days 2-3 at a time where I am intensely experiencing the burning and tingling and tight chest as well.  It's very uncomfortable and I'm sorry you are dealing with it. Many of us are right there with you though.  Reading success stories where people say the burning stopped helps me immensely.  I sometimes can find no rhyme or reason to my tingling. I have a clean diet (no gluten, very little sugar or preservatives of any kind, no red meat or pork) and I don't take any meds except once in a blue moon a Tylenol maybe. If it helps you, I do have stretches of a few days at a time where there is no burning or tingling.  It helps me to know my body does know how to behave properly.  Hang in there.  You can do this.

 

Hugs,

Helen

 

Thank you so much Helen. I appreciate your thoughtfulness and kind words. I’m so sorry that you are having to endure the same. The burning on my head is the worst. It feels like an army of ants stinging my scalp; and also my arms and lower legs. I don’t quite understand it all, but I’ve read it’s all the cortisol and gaba receptors trying to reach balance again.  It’s truly a difficult symptom to bear.

I pray for our renewed strength and healing. I’m so grateful for the support here and the success stories. Thank you for your your encouragement Helen.

Sending you big hugs back. Bless you.

 

JordanJack,

 

You are so welcome.  And you are definitely not alone.  It sounds like you and I have very similar symptoms. The tingling head and face is really rough as is the full body tingling.  It's almost nauseating sometimes, isn't it?  And kind of disorienting.  I just made myself walk a mile on my somewhat hilly road and try to stay loose despite the symptoms.  Not easy but I did it! I hope your day goes better today.

 

Oh wow Helen, yes! It truly is almost nauseating. I get really bad shakes when I feel the burning ramp up. My legs start trembling like I’m shiver. It happens a lot due to the cortisol. My skin looks so crepe paper looking too and my muscle tone is so diminished.

 

I wish I could walk like you’re doing. That is so great! Good for you.

I am a lap swimmer and haven’t been back in the pool for some time.

I’m too afraid that it will cause a set back or make my symptoms worse.

I would think that the cool water of the pool would feel good, but I’m just scared I suppose.

Helen, I think it would be great to start a “Burning, Stinging, and Tingling” support group too.

I know that you, Seeking to Heal, and a few others have the same thing that we do.

It would be great to be able to encourage one another.

You are such a wonderful encourager!

 

I hope you’ve had a good day today. I actually went to the dentist for my teeth cleaning. I’ve been so anxious to go especially with the burning pain, but I finally made the appointment. I was 10 months past due. I used to get them cleaned every 4 my months, but this Benzo journey stopped me in my tracks. I couldn’t bear to do much the first 5 months. But, I’m taking baby steps now, even when in pain.  I’ve gone back to church, been to the chriropractor, ENT (due to nosebleeds) and going into stores a little more.  So those are my small attempts to a little normalcy.

Sadly, my good friends have moved on and doing their own thing. I rarely hear an encouraging word. I don’t blame them though; I’m just trying to heal.  It does hurt my feelings a bit though, but It’s get it.

Im just so grateful for the support found here. We all understand.

Here’s sending you big hugs Helen. Praying that our total healing ❤️‍🩹 happens soon for all of us.

Bless you!

Link to comment
Share on other sites

If you all start a Burning Man group, count me in.

 

The gabapentin I was prescribed for the back pain does take the edge off the nerve/fear pain a little. Before that I really thought I was going to turn into nothing but a pile of cinders, like special effects in a movie. It's so hard to believe it could be that severe and just go on and on.

 

I splurged on AC and running the ceiling fans until my home was like a meat locker. And I don't like the cold.

 

I'm doing better now than I was. Gabapentin will be a bridge to cross, I have no doubt.

 

Liz

 

Hi Liz,

Yes, you and I have been in this burning torment for far too long.

I keep my AC on 65 and sleep with 4 nylon ice packs around my body along with a wet cold washcloth around my neck. The “pile of cinders” is the perfect description. My goodness this is just inhumane.

If someone doesn’t create the Burning, Stimging, Tingling” group, then I will see about setting it up.

We need one for sure so we alikes have a place to encourage one another.

I’m so sorry that you are going through this too.  That Atlanta burning down in the movie “Gone With the Wind” could easily be our backdrop, sadly.

I’m glad you’re feeling a little better. Sending you hugs!

Link to comment
Share on other sites

JordanJack,

 

I'm so sorry for your suffering.  I'm 12 1/2 months post jump and going through stretches of days 2-3 at a time where I am intensely experiencing the burning and tingling and tight chest as well.  It's very uncomfortable and I'm sorry you are dealing with it. Many of us are right there with you though.  Reading success stories where people say the burning stopped helps me immensely.  I sometimes can find no rhyme or reason to my tingling. I have a clean diet (no gluten, very little sugar or preservatives of any kind, no red meat or pork) and I don't take any meds except once in a blue moon a Tylenol maybe. If it helps you, I do have stretches of a few days at a time where there is no burning or tingling.  It helps me to know my body does know how to behave properly.  Hang in there.  You can do this.

 

Hugs,

Helen

 

Thank you so much Helen. I appreciate your thoughtfulness and kind words. I’m so sorry that you are having to endure the same. The burning on my head is the worst. It feels like an army of ants stinging my scalp; and also my arms and lower legs. I don’t quite understand it all, but I’ve read it’s all the cortisol and gaba receptors trying to reach balance again.  It’s truly a difficult symptom to bear.

I pray for our renewed strength and healing. I’m so grateful for the support here and the success stories. Thank you for your your encouragement Helen.

Sending you big hugs back. Bless you.

 

JordanJack,

 

You are so welcome.  And you are definitely not alone.  It sounds like you and I have very similar symptoms. The tingling head and face is really rough as is the full body tingling.  It's almost nauseating sometimes, isn't it?  And kind of disorienting.  I just made myself walk a mile on my somewhat hilly road and try to stay loose despite the symptoms.  Not easy but I did it! I hope your day goes better today.

 

Oh wow Helen, yes! It truly is almost nauseating. I get really bad shakes when I feel the burning ramp up. My legs start trembling like I’m shiver. It happens a lot due to the cortisol. My skin looks so crepe paper looking too and my muscle tone is so diminished.

 

I wish I could walk like you’re doing. That is so great! Good for you.

I am a lap swimmer and haven’t been back in the pool for some time.

I’m too afraid that it will cause a set back or make my symptoms worse.

I would think that the cool water of the pool would feel good, but I’m just scared I suppose.

Helen, I think it would be great to start a “Burning, Stinging, and Tingling” support group too.

I know that you, Seeking to Heal, and a few others have the same thing that we do.

It would be great to be able to encourage one another.

You are such a wonderful encourager!

 

I hope you’ve had a good day today. I actually went to the dentist for my teeth cleaning. I’ve been so anxious to go especially with the burning pain, but I finally made the appointment. I was 10 months past due. I used to get them cleaned every 4 my months, but this Benzo journey stopped me in my tracks. I couldn’t bear to do much the first 5 months. But, I’m taking baby steps now, even when in pain.  I’ve gone back to church, been to the chriropractor, ENT (due to nosebleeds) and going into stores a little more.  So those are my small attempts to a little normalcy.

Sadly, my good friends have moved on and doing their own thing. I rarely hear an encouraging word. I don’t blame them though; I’m just trying to heal.  It does hurt my feelings a bit though, but It’s get it.

Im just so grateful for the support found here. We all understand.

Here’s sending you big hugs Helen. Praying that our total healing ❤️‍🩹 happens soon for all of us.

Bless you!

 

Jordan Jack,

 

You went to the dentist!  That's impressive.  Good for you. I've only been in twice in the past 2 1/2 years and that was due to a broken tooth and then an inlay that had fallen out. I used to get my teeth cleaned twice year and it's now been 2 1/2 years!  I am just using my electric toothbrush 3 times a day and flossing and using a good oral rinse and hoping my mouth can hold out until I feel comfortable enough that I can keep an appt. 

 

Swimming is so healthy and I hope you can go soon.  I can't always walk so don't be impressed. I am actually wondering if my walking has triggered this wave.  My balance gets so off that walking is sometimes just not doable.  Do you do any kind of stretching or gentle yoga? I try to do that a few times a week but sometimes it's just too hard.  The stretching really does help with the tight muscles though. 

 

I understand about the friend thing. Mine are kind and patient but they don't invite me to do as many things since I can rarely join them and maybe it's a way of them not making me feel uncomfortable not being able to accept their offers.  Sometimes I'll just have a friend come over and sit on my couch with me. I see my neighbor friends when I go out for walks sometimes.  I hope you'll be able to get out and socialize some too. It sounds like you are making baby steps in the right direction with church, etc.  Today, I'm doing something I haven't done in a long while. I'm going to spend part of my day sitting in bed with my book and my laptop and tv.  My instincts are telling me that my nervous system is overloaded (for whatever reason). The ear ringing, tingling, buzzing, heart palps, etc were with me ALL NIGHT LONG and just making any sort of physical effort seems too much. I'll give this one day but then I'm getting back up and trying my routine again.  It's so hard to know what to do.

 

Yes, we all need to encourage each other. That's for sure.  I'm probably not the one to start a group for the "tinglers" but I'd happily join if someone else did.

 

Best of health to you,

Helen

 

Link to comment
Share on other sites

It is crazy what these benzos do to us but upon digging into this it makes sense, it's not just Gaba receptors and Glutamate receptors involved here it's our Nervous system which is no joke.

 

For those who don't know the Nervous system is broken up into two main sections

 

1) CNS: (Central Nervous system) this is your brain and Spinal cord

 

2) PNS: (Peripheral nervous system) containing of neurons and ganglia which branch out from the Spinal cord, sending and receiving messages and signals to every single area of the body.

 

Together they make up The Nervous system

 

GABA although present everywhere in the body (Using PNS networks and pathways), is simply a entry point for the benzos to get to our Nervous system and really cause harm with long term exposure which this should of been common knowledge for our doctors, none of us should have to be in this position and certainly we shouldn't of had to over exposure with more knowledge then them but here we are.

 

Think of the Nervous system and GABA like a house with a two car garage.

 

GABA: Main house

 

Garage #1: GabaA: Benzos, some medications, supplements bind to these receptors

 

Garage #2: GabaB: Alcohol binds to these receptors

 

GABA as a whole makes up 70% of the Nervous system, some sources say 74% and others go up to 78%.i play it safe by sticking with 70% which is still super ridiculous to play with medications which can cause this amount of change it's craziness to me of course we'd be harmed to some degree which I wish I knew this prior.

 

For the Nervous system, same deal... Nervous system would be the main house with Garage 1 being the CNS and #2 being the PNS.

 

It gets worse, within the Nervous system you also have sub set systems such as

The vestibular system

Musculatory system

integumentary system,autonomic nervous system lymphatic system, respiratory system, digestive system, endocrine system, cardiovascular system, urinary system, and reproductive systems

Each with their own sets of symptoms when disturbed ranging from Muscles, Neurological, Hormonal changes like increased cortisol and Histamine content, perceptional and visual changes, sensory and automotive dysfunctions, gene expression alterations and food/chemical sensitivities which just suck.

 

Then there's the whole Glutamate storm issue where food can rev up symptoms as well.

 

We've really walked into a hurricane but hey the good news is we're not the only ones, think about this... Benzodiazepines outsell opioids 3-1 which is insane so we're literally fighting a hidden pandemic. Unlike other drugs benzos don't cause damage only a injury.

 

The difference is that damages cause a structural alteration to whichever body part takes damage where as with a injury, you can suffer all the same symptoms as what you'd expect with damages just there's no structural alteration. In our cause its our Nervous system which will adjust and re-program. It's just so dang crazy the symptoms youd never even think about was possible along the way it's insanity. Just keep up the good fight.

 

This is nothing more then a chapter in your book, keep flipping those pages until you get to a better one.

 

Also also, I have some links to help you out.

 

Theres also a link of common stresses from medications to supplements which cause you're symptoms, or have been reported to cause a rev up of symptoms ill post here if I'm allowed to post links.

 

Benzo links

 

Stastical overview:

 

https://www.psychologytoday.com/us/blog/side-effects/202205/benzodiazepine-withdrawal-tied-serious-long-term-harms

 

Benzo Org:

 

https://www.benzo.org.uk/

 

Benzodiazepine information coalition

 

https://www.benzoinfo.com/

 

Kindling:

 

https://www.benzoinfo.com/kindling/

 

Rehab and Benzos:

 

https://www.benzoinfo.com/2018/04/20/why-prescribed-benzo-patients-shouldnt-go-to-detox-or-rehab/

 

https://en.m.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome#:~:text=Benzodiazepine%20withdrawal%20syndrome%E2%80%94often%20abbreviated,undergoes%20dosage%20reduction%20or%20discon

 

Ashton Manual:

 

https://www.benzo.org.uk/manual

 

https://www.fda.gov/drugs/fda-drug-safety-podcasts/fda-requiring-boxed-warning-updated-improve-safe-use-benzodiazepine-drug-class#:~:text=To%20address%20the%20serious%20risks,anxiety%2C%20insomnia%2C%20and%20seizures.k

 

Presentation:

 

 

https://www.nytimes.com/2020/09/23/health/benzodiazepines-fda-warning.html

 

https://en.m.wikipedia.org/wiki/Benzodiazepine_dependence#:~:text=Tolerance%20and%20physical%20dependence,-See%20also%3A%20Kindling&text=Tolerance%20develops%20rapidly%20to%20the,tolerance%20develops%20in%20most%20individuals.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321276

 

Medications and supplements/Interaction cause for concern:

 

https://www.benzoinfo.com/medications-and-supplements

 

Respository:

 

http://www.benzobuddies.org/forum/index.php?board=165.0

 

https://www.psychiatrictimes.com/view/online-communities-drug-withdrawal-what-can-we-learn

 

Benzos link 2

 

Explaining GabaA:

 

Video #1:

 

Video #2:

 

Video #3:

 

Nervous system :

 

GabaA/Gene expression:

https://www.jneurosci.org/content/23/37/11711

 

Benzodiazepines 1998 findings

https://jamanetwork.com/journals/jamapsychiatry/fullarticle/204145

 

Benzo stastics/rates/percentages:

https://www.benzoinfo.com

 

Benzo Guidelines:

https://pubmed.ncbi.nlm.nih.gov/7525193/

 

Patient testimony (Anecdotal/ Not medically indicated) :

 

https://www.benzoinfo.com/2018/11/13/benzo-withdrawal-why-i-ignored-medical-advice-and-listened-to-the-internet

 

https://www.benzoinfo.com/2019/11/11/yes-benzos-help-some-that-doesnt-justify-ignoring-patient-safety

 

Patient testimony YouTube format:

 

 

 

 

 

Christy Huff Testimony/Doctor harmed by Benzodiazepines:

 

 

Doctor testimony

 

https://youtu.be/UXPTXxIObMw

 

Section about doctors:

 

https://youtu.be/h3m_l6zAErk

 

https://www.kevinmd.com/2020/01/stop-cutting-patients-off-their-prescribed-benzodiazepines.html

 

Benzo calculator

https://clincalc.com/Benzodiazepine/

 

 

 

 

 

 

 

 

Link to comment
Share on other sites

Hello,

 

If they create the support group I would also be.

 

Jordanjack you describe it very well it feels like you are butter on a griddle.

 

I never had that burning with that intensity or acute. But I got vaccinated and I've had a setback.

I also miss my life, I had recovered quite a bit before this setback.

 

Wishing we could get some relief

Link to comment
Share on other sites

It is crazy what these benzos do to us but upon digging into this it makes sense, it's not just Gaba receptors and Glutamate receptors involved here it's our Nervous system which is no joke.

 

For those who don't know the Nervous system is broken up into two main sections

 

1) CNS: (Central Nervous system) this is your brain and Spinal cord

 

2) PNS: (Peripheral nervous system) containing of neurons and ganglia which branch out from the Spinal cord, sending and receiving messages and signals to every single area of the body.

 

Together they make up The Nervous system

 

GABA although present everywhere in the body (Using PNS networks and pathways), is simply a entry point for the benzos to get to our Nervous system and really cause harm with long term exposure which this should of been common knowledge for our doctors, none of us should have to be in this position and certainly we shouldn't of had to over exposure with more knowledge then them but here we are.

 

Think of the Nervous system and GABA like a house with a two car garage.

 

GABA: Main house

 

Garage #1: GabaA: Benzos, some medications, supplements bind to these receptors

 

Garage #2: GabaB: Alcohol binds to these receptors

 

GABA as a whole makes up 70% of the Nervous system, some sources say 74% and others go up to 78%.i play it safe by sticking with 70% which is still super ridiculous to play with medications which can cause this amount of change it's craziness to me of course we'd be harmed to some degree which I wish I knew this prior.

 

For the Nervous system, same deal... Nervous system would be the main house with Garage 1 being the CNS and #2 being the PNS.

 

It gets worse, within the Nervous system you also have sub set systems such as

The vestibular system

Musculatory system

integumentary system,autonomic nervous system lymphatic system, respiratory system, digestive system, endocrine system, cardiovascular system, urinary system, and reproductive systems

Each with their own sets of symptoms when disturbed ranging from Muscles, Neurological, Hormonal changes like increased cortisol and Histamine content, perceptional and visual changes, sensory and automotive dysfunctions, gene expression alterations and food/chemical sensitivities which just suck.

 

Then there's the whole Glutamate storm issue where food can rev up symptoms as well.

 

We've really walked into a hurricane but hey the good news is we're not the only ones, think about this... Benzodiazepines outsell opioids 3-1 which is insane so we're literally fighting a hidden pandemic. Unlike other drugs benzos don't cause damage only a injury.

 

The difference is that damages cause a structural alteration to whichever body part takes damage where as with a injury, you can suffer all the same symptoms as what you'd expect with damages just there's no structural alteration. In our cause its our Nervous system which will adjust and re-program. It's just so dang crazy the symptoms youd never even think about was possible along the way it's insanity. Just keep up the good fight.

 

This is nothing more then a chapter in your book, keep flipping those pages until you get to a better one.

 

Also also, I have some links to help you out.

 

Theres also a link of common stresses from medications to supplements which cause you're symptoms, or have been reported to cause a rev up of symptoms ill post here if I'm allowed to post links.

 

Benzo links

 

Stastical overview:

 

https://www.psychologytoday.com/us/blog/side-effects/202205/benzodiazepine-withdrawal-tied-serious-long-term-harms

 

Benzo Org:

 

https://www.benzo.org.uk/

 

Benzodiazepine information coalition

 

https://www.benzoinfo.com/

 

Kindling:

 

https://www.benzoinfo.com/kindling/

 

Rehab and Benzos:

 

https://www.benzoinfo.com/2018/04/20/why-prescribed-benzo-patients-shouldnt-go-to-detox-or-rehab/

 

https://en.m.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome#:~:text=Benzodiazepine%20withdrawal%20syndrome%E2%80%94often%20abbreviated,undergoes%20dosage%20reduction%20or%20discon

 

Ashton Manual:

 

https://www.benzo.org.uk/manual

 

https://www.fda.gov/drugs/fda-drug-safety-podcasts/fda-requiring-boxed-warning-updated-improve-safe-use-benzodiazepine-drug-class#:~:text=To%20address%20the%20serious%20risks,anxiety%2C%20insomnia%2C%20and%20seizures.k

 

Presentation:

 

 

https://www.nytimes.com/2020/09/23/health/benzodiazepines-fda-warning.html

 

https://en.m.wikipedia.org/wiki/Benzodiazepine_dependence#:~:text=Tolerance%20and%20physical%20dependence,-See%20also%3A%20Kindling&text=Tolerance%20develops%20rapidly%20to%20the,tolerance%20develops%20in%20most%20individuals.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321276

 

Medications and supplements/Interaction cause for concern:

 

https://www.benzoinfo.com/medications-and-supplements

 

Respository:

 

http://www.benzobuddies.org/forum/index.php?board=165.0

 

https://www.psychiatrictimes.com/view/online-communities-drug-withdrawal-what-can-we-learn

 

Benzos link 2

 

Explaining GabaA:

 

Video #1:

 

Video #2:

 

Video #3:

 

Nervous system :

 

GabaA/Gene expression:

https://www.jneurosci.org/content/23/37/11711

 

Benzodiazepines 1998 findings

https://jamanetwork.com/journals/jamapsychiatry/fullarticle/204145

 

Benzo stastics/rates/percentages:

https://www.benzoinfo.com

 

Benzo Guidelines:

https://pubmed.ncbi.nlm.nih.gov/7525193/

 

Patient testimony (Anecdotal/ Not medically indicated) :

 

https://www.benzoinfo.com/2018/11/13/benzo-withdrawal-why-i-ignored-medical-advice-and-listened-to-the-internet

 

https://www.benzoinfo.com/2019/11/11/yes-benzos-help-some-that-doesnt-justify-ignoring-patient-safety

 

Patient testimony YouTube format:

 

 

 

 

 

Christy Huff Testimony/Doctor harmed by Benzodiazepines:

 

 

Doctor testimony

 

https://youtu.be/UXPTXxIObMw

 

Section about doctors:

 

https://youtu.be/h3m_l6zAErk

 

https://www.kevinmd.com/2020/01/stop-cutting-patients-off-their-prescribed-benzodiazepines.html

 

Benzo calculator

https://clincalc.com/Benzodiazepine/

 

Hi Mustang,

Wow! This is fabulous! Thank you so much for all these resources! I will look through each one.

I so much appreciate you taking the time to list all these for me.

This truly is the most horrendous journey that I ever imagined.

The burning has been so terribly painful and relentless. It seems I rarely get a window and the relief is rare. I was hoping I’d be so much better by now. My spirit is somewhat broken so I’m praying that I turn a corner soon. I hope you are doing well.

Thank you for your thoughtfulness and encouraging words.

Bless you!!!

Link to comment
Share on other sites

Hello,

 

If they create the support group I would also be.

 

Jordanjack you describe it very well it feels like you are butter on a griddle.

 

I never had that burning with that intensity or acute. But I got vaccinated and I've had a setback.

I also miss my life, I had recovered quite a bit before this setback.

 

Wishing we could get some relief

 

Hi Aira,

I’m so sorry you’re having to go through this as well.

It truly is so difficult, day after day after day after day.

It’s so good that you recovered somewhat and you can trust that you will overcome this setback.

I’ve heard some others that had setbacks due to the vaccine, so I pray you will find relief soon.

The good thing is that you know you recovered and know that feeling, so it will come again for you and you’ll be on the other side before you know it.

 

The burning truly is the 7th circle of hell. There aren’t enough words to describe the pain and torment.

Sometimes it feels like hot lava on the body and other times feels like 100 bees stinging.

The mornings and afternoons are worse for me. Do you get any relief? I’m just so sorry.

Get yourself some nylon ice packs from Amazon. They help. I use 4 around my body every night in addition to cold wash cloths around my neck. A cool mist humidifier helps too.

I hope you feel better soon. I pray for our restoration.

Bless you.

Link to comment
Share on other sites

JordanJack,

 

I'm so sorry for your suffering.  I'm 12 1/2 months post jump and going through stretches of days 2-3 at a time where I am intensely experiencing the burning and tingling and tight chest as well.  It's very uncomfortable and I'm sorry you are dealing with it. Many of us are right there with you though.  Reading success stories where people say the burning stopped helps me immensely.  I sometimes can find no rhyme or reason to my tingling. I have a clean diet (no gluten, very little sugar or preservatives of any kind, no red meat or pork) and I don't take any meds except once in a blue moon a Tylenol maybe. If it helps you, I do have stretches of a few days at a time where there is no burning or tingling.  It helps me to know my body does know how to behave properly.  Hang in there.  You can do this.

 

Hugs,

Helen

 

Thank you so much Helen. I appreciate your thoughtfulness and kind words. I’m so sorry that you are having to endure the same. The burning on my head is the worst. It feels like an army of ants stinging my scalp; and also my arms and lower legs. I don’t quite understand it all, but I’ve read it’s all the cortisol and gaba receptors trying to reach balance again.  It’s truly a difficult symptom to bear.

I pray for our renewed strength and healing. I’m so grateful for the support here and the success stories. Thank you for your your encouragement Helen.

Sending you big hugs back. Bless you.

 

JordanJack,

 

You are so welcome.  And you are definitely not alone.  It sounds like you and I have very similar symptoms. The tingling head and face is really rough as is the full body tingling.  It's almost nauseating sometimes, isn't it?  And kind of disorienting.  I just made myself walk a mile on my somewhat hilly road and try to stay loose despite the symptoms.  Not easy but I did it! I hope your day goes better today.

 

Oh wow Helen, yes! It truly is almost nauseating. I get really bad shakes when I feel the burning ramp up. My legs start trembling like I’m shiver. It happens a lot due to the cortisol. My skin looks so crepe paper looking too and my muscle tone is so diminished.

 

I wish I could walk like you’re doing. That is so great! Good for you.

I am a lap swimmer and haven’t been back in the pool for some time.

I’m too afraid that it will cause a set back or make my symptoms worse.

I would think that the cool water of the pool would feel good, but I’m just scared I suppose.

Helen, I think it would be great to start a “Burning, Stinging, and Tingling” support group too.

I know that you, Seeking to Heal, and a few others have the same thing that we do.

It would be great to be able to encourage one another.

You are such a wonderful encourager!

 

I hope you’ve had a good day today. I actually went to the dentist for my teeth cleaning. I’ve been so anxious to go especially with the burning pain, but I finally made the appointment. I was 10 months past due. I used to get them cleaned every 4 my months, but this Benzo journey stopped me in my tracks. I couldn’t bear to do much the first 5 months. But, I’m taking baby steps now, even when in pain.  I’ve gone back to church, been to the chriropractor, ENT (due to nosebleeds) and going into stores a little more.  So those are my small attempts to a little normalcy.

Sadly, my good friends have moved on and doing their own thing. I rarely hear an encouraging word. I don’t blame them though; I’m just trying to heal.  It does hurt my feelings a bit though, but It’s get it.

Im just so grateful for the support found here. We all understand.

Here’s sending you big hugs Helen. Praying that our total healing ❤️‍🩹 happens soon for all of us.

Bless you!

 

Jordan Jack,

 

You went to the dentist!  That's impressive.  Good for you. I've only been in twice in the past 2 1/2 years and that was due to a broken tooth and then an inlay that had fallen out. I used to get my teeth cleaned twice year and it's now been 2 1/2 years!  I am just using my electric toothbrush 3 times a day and flossing and using a good oral rinse and hoping my mouth can hold out until I feel comfortable enough that I can keep an appt. 

 

Swimming is so healthy and I hope you can go soon.  I can't always walk so don't be impressed. I am actually wondering if my walking has triggered this wave.  My balance gets so off that walking is sometimes just not doable.  Do you do any kind of stretching or gentle yoga? I try to do that a few times a week but sometimes it's just too hard.  The stretching really does help with the tight muscles though. 

 

I understand about the friend thing. Mine are kind and patient but they don't invite me to do as many things since I can rarely join them and maybe it's a way of them not making me feel uncomfortable not being able to accept their offers.  Sometimes I'll just have a friend come over and sit on my couch with me. I see my neighbor friends when I go out for walks sometimes.  I hope you'll be able to get out and socialize some too. It sounds like you are making baby steps in the right direction with church, etc.  Today, I'm doing something I haven't done in a long while. I'm going to spend part of my day sitting in bed with my book and my laptop and tv.  My instincts are telling me that my nervous system is overloaded (for whatever reason). The ear ringing, tingling, buzzing, heart palps, etc were with me ALL NIGHT LONG and just making any sort of physical effort seems too much. I'll give this one day but then I'm getting back up and trying my routine again.  It's so hard to know what to do.

 

Yes, we all need to encourage each other. That's for sure.  I'm probably not the one to start a group for the "tinglers" but I'd happily join if someone else did.

 

Best of health to you,

Helen

 

Hi Helen,

Yes, I was nervous about going to the dentist too so I understand. I was afraid to go because of the burning skin sensations everywhere and the anxiety that hangs on because of the pain. The hygienist was very sweet as was my dentist. I used to go every 4 months, and it has been way too long, a little over a year.  They told me that Covid caused a lot of people to hold off from the dentist and that with good hygiene folks tend to do fine. You’ll be able to get there too once you feel more comfortable.

 

The burning is just so very brutal these days it makes me wonder if I will ever heal. I mean how can one burn everyday for 10 months including my taper. It’s almost too much for me to bear sometimes.

I pray for mercy everyday.  I don’t understand why some of us suffer so greatly and then others have such mild symptoms. Not to belittle the minor symptoms, because they are all hard, but the physical pain is so very difficult day after day. It’s like a burning endless flu that breaks the body everyday.

 

I’m so sorry that you’ve been enduring you symptoms hanging on. I have the tinnitus as well, sometimes louder than others. I get the heart palpitations sometimes when my anxiety ramps up due to the burning. I’ve been having hot flashes too. Of course the heat of summer doesn’t help any of this either. I’m in the south, so we have had such hot days. I used to love the sun as I grew up on the ocean, but I don’t care for it at all now. I do hope to get back in the pool to swim laps and it’s an indoor pool which is great to be out of the sun.

You are doing great with your walking and it’s good to take a down day for yourself with a good book on days where you can do that.  I work from home as a programmer so I am grateful for the distraction.  I dread nights because I don’t sleep well due to the burning and hot flashes, so I hope that changes for me soon.

 

I pray we both turn a corner soon. You have great courage and strength.

Thank you for being so kind and supportive.

Sending you big hugs.

Link to comment
Share on other sites

×
×
  • Create New...