Back again after 5 years off - worse than acute - could it be related??

[[Ar...]]

So what do I do??? How do I go about living? Can I get back to at least how I was in the spring??? I’m so terrified an in so much agony and desperation. Do I just give up??

 

If I were a wizard, I would help you and myself and everyone on this forum.

[[Ar...]]

 

In general, I have a bunch of late extrapyramidal symptoms. There is not the slightest chance of recovery and improvement.

[[Me...]]

You just stopped PPI’s a month ago? What are PPI’s? Did your symptoms start when you stopped them or started them? Thinking that’s related.

 

I took an antibiotic and it made alll of my symptoms momentarily come back. I don’t think it’s safe to take anything new until we’re 100%

[[Re...]]

You just stopped PPI’s a month ago? What are PPI’s? Did your symptoms start when you stopped them or started them? Thinking that’s related.

 

I took an antibiotic and it made alll of my symptoms momentarily come back. I don’t think it’s safe to take anything new until we’re 100%

 

PPIs are proton pump inhibitor’s which people take for acid reflux. Also known as Prilosec and Nexium which you can buy over the counter.

[[ca...]]

My symptoms are worse now, extreme burning lack of sleep adrenaline surges constantly but I’m under EXTREME STRESS and isolation. I get weakness where I can’t get up I’m so exhausted. Drs keep checking stuff but everything comes back normal. Is there really no hope???

[[Me...]]

Do you smoke weed or drink?

What other meds have you been on?

Have you had surgery or dental work?

 

Something isn’t adding up here. You were 100% healed?

And you have severe hypoglycemia? Are you medicating or leaving it untreated?

 

Have you had a brain MRI? At this point I’d rule out other things

Most buddies heal and don’t come back unless they have a set back from drugs/alcohol

[Guest [...]]

cactussunset,

How are your hormones?  Have you noticed a pattern with your burning and nerve pain with hormonal fluctuations?

 

 

[[ca...]]

Nope. Don't drink don't smoke. I was not 100%  healed... about 65% I'd say. I don't take any other prescription meds, not drugs.

[[ca...]]

Yaaaas. Totally notice more burning and issues with hormones but on lab tests Dr's say hormones are fine

At first they thought early menopause but then lab blood tests were good. So Idk but when this all started I thought it was hormonal only.

 

There's no medication for hypoglycemia. So it's not treated with that.

 

No dental work

[[Me...]]

I’m sorry cactus. I thought you had been 100% healed and came back

So sorry you’re not 100% healed yet. That must be so frustrating...

[[Be...]]

If you're over 40 it still could be hormonal changes from peri-menopause, IMO.  Did the docs do an ANA blood test to check for antibodies?  Mine did and I had a high ANA and then was diagnosed with Lupus.

[[Mi...]]

I'm reading your original post and it says you tried some natural remedies. Even natural remedies can "add to the pot" and stir things up for a while.

 

For example, I had a set back from the flu shot I got over 3 weeks ago. Most do not have issues with the flu shot in withdrawal, but I did. This set back was after I had been 90% healed for a several months. I'm getting better now, but I still have bad days. I can be taking a nature walk one day, then the next I'm going into Hobby Lobby and having a heck of a time walking. My brain was extremely fatigued and my legs did not want to move. A person not in withdrawal would be running for the neurologist thinking they had MS, but I just had an MRI of the brain 4 months ago with no issues. It's all part of withdrawal.

 

Adding a few different types of remedies may ramp things up and then you'll need time to heal from them. Your post said you had Vistaril. Was that back in 2015? Or recently? Meds can bring on symptoms. Any med. I just read that someone used a topical steroid cream and they are having issues. Some are very sensitive.

 

Stress can ramp things up in a big way too. We pretty much have a huge intolerance to over stimulation and stress. Our healing CNS systems are so raw. For instance I'm noticing that just changes in lighting affects me. I've had dizziness and the boaty feeling a lot during this process. It was gone for 8 months, but the flu shot brought it back. When I walk in a dark room, the vertigo ramps up. I have to hold on to things. My eyes need something to focus on to balance. This is something that a non benzo withdrawal brain can handle with complete efficiency and mastery, but for a healing brain it's a challenge. The change in pupil size and messages sent to the brain then to the arms and legs is slow and sluggy. I'm just using this as an example of how stress and over stimulation can bring on symptoms. If just a change in going from a well lit room then going to a dark room brings on symptoms, imagine what a stressful life event can do.

 

You have to put yourself into survival healing mode and separate from life stress as much as possible. If something daunting has happened in life, step away from it and let other people handle it as much as possible. Get to where you can get help. I've read where someone had to stay at a friend's for months and not work and they stayed in a room to let themselves heal, and many different stories like this. We are really out of the "rat race" of life until we heal.

 

Because we are at this juncture in our life, it is the way it is. I've had to put my foot down several times with family and family issues. They are just too stressful for me. I've had to tell my 80 year old father: "Sorry. I am not someone you can depend on right now. I'm too sick. I'm sick and cannot be depended on." And, I won't be someone who can be depended on for a few years. I may heal before then, but I gave myself plenty of space to do so. He has to go to my sister and my brother-in-law if he needs anything. I cannot. I will be "out of the loop" in life for funerals, weddings, caregiving for another etc etc. This is just a part of my life that I am sick and surviving. That's just the way it is.

 

Doing this was a part of acceptance for me too. Freeing myself of that responsibility gives me space to heal.

 

I'm so sorry you're going through this. You've healed before and will again. Get as much help as you can. Stay around kind people. Kick any unnecessary extra stressors to the curb.

[Guest [...]]

Yaaaas. Totally notice more burning and issues with hormones but on lab tests Dr's say hormones are fine

At first they thought early menopause but then lab blood tests were good. So Idk but when this all started I thought it was hormonal only.

 

There's no medication for hypoglycemia. So it's not treated with that.

 

No dental work

 

So common to experience these extremes with hormonal fluctuations. Hypoglycemia, too.

I have worked with a holistic gyno to better stabilize hormones and it has been helpful. Lab tests for “normal range” widely vary; symptoms are a better indicator that something is amiss.

 

Are you able to see a different gynecologist for a second opinion? 

 

[[Me...]]

Cactus

 

 

Read this

 

http://www.benzobuddies.org/forum/index.php?topic=178596.0

 

[[ca...]]

Thank you Miss Fortitude. I’m EXTREMELY stressed. The move to get to where there is more help is EXTREMELY stressful. I did try visterol years ago and then last month too. That’s when things got REALLY out of control. I tried a million natural remedies and when they didn’t work we went to meds. I tried stomach meds, anxiety meds etc. still trying supplements. But yes so so so stressful too. But my symptoms get more severe daily. I don’t have a friend or family to stay with. That’s the problem but if I could move across the country I could have some friend support. I’d have more holistic drs too who might be able to help whole picture of things. Can I still heal after the crazy stress of the move?? I’m a WRECK!!!! I’m constantly in fight flight so many adrenaline surges jolts waking disoriented burning muscle spasms etc etc

[[ca...]]

Omg Meganz!!! Thank you sooooooooooo very much!!!!!!!! That is the 1st person I’ve ever seen like me. So similar yet he was healed a little farther along than me. I trust Baylissa so much!! I was thinking of contacting her again. Thank you for posting that!! I’m very grateful.

[[ca...]]

Cactus

 

 

Read this

 

http://www.benzobuddies.org/forum/index.php?topic=178596.0

 

 

 

Thank you for sharing this!!!!!!!

[[Me...]]

Cactus

 

 

Read this

 

http://www.benzobuddies.org/forum/index.php?topic=178596.0

 

You’re so welcome Cactus. There are quite a few more stories like that under the success stories section.

 

 

 

Thank you for sharing this!!!!!!!

[[Ri...]]

Sorry to hear that you are experiencing so much pain.

I can make a few recommendations

For your stomach issues Braggs Apple Cider vinegar,  this will help with reflux and bring your HCL levels into balance.

For your withdrawal issues I would look into Trileptal 2 x 300 mg per day and low dose of lyrica 25mg  as needed.

Both of these helped my wife through a brutal withdrawal following a CT

 

[[ca...]]

Thank you for feedback. It just doesn’t make sense this far off to be this debilitatingly sick. But I have connected with others who it has happened to so I’m going to try to get an appointment eventually with Baylissa or someone for help. I hope it’s possible to recover... even if only to the point I was before all this, I’d be grateful for that as I was able to at least function, make food, go out, do a little part time work. Now getting in the shower is a struggle. 🙏

[[ma...]]

Thank you all that is so helpful.  I have tracked symptoms and I am definitely getting WORSE - unfortunately.  In acute there were windows.  Now, no windows at all.  It is freaking me out.  I could get through it if I knew I would get some better days but for now it is just worse each day.  I like all your suggestions though.  I do appreciate it, very helpful.  Thank you!!  I just can't live like this forever.  Most definitely cannot.  I can't take any otc stuff.  It all makes me worse and makes me sleep less.  I just want to get somewhat better again

 

I am also SOOOO Stressed.  It is stress I can't get out of.  I was homeless for a short time last year.  I flared but bounced back within about 2 months.  This is different.  The stomach pain I had just kept me in constant stress.  Constant stress.  Then not finding care for it, losing work, losing function, having to do it ALL alone, thinking of the move etc etc has just debilitated me.  Now, my body is in so much pain and I'm still all alone with no care, I don't know how to even get out of it.  So, thanks for your reply.  I really appreciate it!

 

Hi Cactus :

 

Perhaps it is time for you to get some Neurological testing to see what s up with your brain functions!

The electrical synapses in the brain can be tested to see if they are functioning properly. Do you have a Neurologist or a Neuropsychologist?  Just a thought from someone who has fecked up synapses thanks to a Benzo .

 

 

[[ca...]]

Looking in to that too thank u

[[Pa...]]

Hi cactussunset,

 

How are you doing, you haven't posted in awhile.  I miss seeing your beautiful sunset avatar around the forum. 

 

Pamster