12-24 months and up support group

[[Fo...]]

Fox, when I was in tolerance w/d I went to see a Neurologist and he ran an ANA blood test and it was positive and high and he told me I had Lupus, and then he did an EMG test and noticed that I had Carpal Tunnel Sydrome.  And then I was referred to a Rheumatologist and she ran another ANA blood test and it was positive, and then she ran more blood tests and diagnosed me with Raynaud's Syndrome and the Lupus was confirmed.  I have a procoagulant antibody in my blood called Anti-Beta 2 Glycoprotein 1 (IGM).  I also went to a Hematologist then and he diagnosed me with Thrombophilia because of my procoagulant autoantibody in my blood.  I'm at risk of stroke and heart attack.  Maybe you can have your doc run an ANA blood test which screens for many autoimmune diseases?  I was told to take Plaquenil for the Lupus, and I took one pill and it made me feel very bad.  Then she wanted to give me Gabapentin, but since I'm prone to depression she wouldn't give that to me.  Then she gave me a script for Seroquel and I got that filled and took a bit of that for awhile, but it made me feel horrible.  So now all I take at bedtime is a baby aspirin or two.  I also was diagnosed with Lupus Encephalitis a few years ago which explains the severe head pressure I've got all the time.  Also diagnosed with Memory Impairment, Amnesia and Stuttering too a few years ago.  Also diagnosed with Paroxysmal Tachycardia too a few years ago.  This all explains why I'm so sick now.  The drugs have damaged me severely.   

It's weird I have, all the things you have and I actually am getting those blood tests next month for the clotting factors.  Do you bruise easily ? I developed raynauds during withdrawl or as a reaction to buspar, not sure which .

 

Yes I do bruise easily.  Sometimes I get bruises and I don't even know how I got them.  One time I fell off a chair backward after changing a lightbulb and I have a very dark bruise on the inside of my upper arm that was about 6" long and 3" wide.  I also break blood vessels in my fingers when I'm outside just using the padded grass shears.  My theory is that these benzo's and Z-drugs damaged our nervous system and our nerves innervate our blood vessels too much and damage them.  Are the veins on the back of your hands and legs ballooned?  Mine are.  Hopefull01, Joey, on this forum complained a few months ago on his blog about how his feet were purple and he believed his blood was pooling in his feet.  Mine used to turn beat red when I'd sit on them and if I even try to now, they go numb.  Circulation problems for sure.

 

I do also bruise and no idea what from, I also get popped vessels in my hands and sometimes I've even seen them come up and then pop. It's so nor normal, do you think we'll be ok? I also have pooling and I can tell circulation is way off..sometimes I wake up and it feels like there's no blood in my upper body and I have to shake until there is, also not breathing well during it.  So sick of being afraid. Really scary. Spo2 drops. Notice my bp gets very low also, and I can tell because of my vision

[[Fo...]]

decatur

I am glad you are able to take a breath. God knows how precious that is. I hope things stay low key. Keep us posted. Healing is happening in the background!

 

foxclover

I am sorry you are in so much pain. People say mental is worse than physical. But the truth is, any symptom is as bad as any when taken to its extreme. I am sorry this has been so debilitating. I'm sorry your muscles are giving you pain. I wish ice and heat packs could take it all away. The fog on top of the physical symptoms it is so unpleasant. It's withdrawal playing mind games. Posting is good for the soul.

 

Pashu

I had no widows for the longest time. I thought without windows and waves how can I get better? I found a few other like me. The said they slowly healed over time. Don't believe those thoughts. Healing comes.

i

Gardenguru

Its good to see you again. I am glad your husband is feeling better. I understand gut issues, I am about to try an enzyme soon and scared out of my wits that it will set me back. Yeat infections are a stress. I am sorry you are dealing with one. Sitting in a bath with 5 cups of epsom salt for half an hour always helped mine. I would do that a few times throughout a couple days. I found out later it is a natural destroyer of yeast. Hang in there

 

Leann

Ha, never recover with a negative attitude? pish posh.  It was impossible for me not to have one, my depression was one of my symptoms. I would keep saying positive things to myself (as one should) but didn't feel it. And I improved. And now that I am more positive I am waiting again. So that sounds like a blanket statement. Im sure positivity helps i many ways, but it is not the cure. You're a hell of a person. Whether you have positivity or not.

 

Lady Den

Thank you for all the support you give. I hope you are doing ok yourself. Last I read you got hit with a bit of a wave. Hope that is better. How are you doing now?

 

JBen

Good to see you. How are you doing. I hope you had some good moments. I must have missed a few of your post.

 

LiveLife

You deserve more words than I can type. Sorry my pain is getting bad. But keep hanging on. Don't look toward the bad. There is a way out even if you can't see it. If you keep going forward you will find it.

 

Man, It seems like the planets align in such a way that many of us got hit at the same time.

To anyone I missed, keep going and healing to you all.

<3

[[Be...]]

Fox, when I was in tolerance w/d I went to see a Neurologist and he ran an ANA blood test and it was positive and high and he told me I had Lupus, and then he did an EMG test and noticed that I had Carpal Tunnel Sydrome.  And then I was referred to a Rheumatologist and she ran another ANA blood test and it was positive, and then she ran more blood tests and diagnosed me with Raynaud's Syndrome and the Lupus was confirmed.  I have a procoagulant antibody in my blood called Anti-Beta 2 Glycoprotein 1 (IGM).  I also went to a Hematologist then and he diagnosed me with Thrombophilia because of my procoagulant autoantibody in my blood.  I'm at risk of stroke and heart attack.  Maybe you can have your doc run an ANA blood test which screens for many autoimmune diseases?  I was told to take Plaquenil for the Lupus, and I took one pill and it made me feel very bad.  Then she wanted to give me Gabapentin, but since I'm prone to depression she wouldn't give that to me.  Then she gave me a script for Seroquel and I got that filled and took a bit of that for awhile, but it made me feel horrible.  So now all I take at bedtime is a baby aspirin or two.  I also was diagnosed with Lupus Encephalitis a few years ago which explains the severe head pressure I've got all the time.  Also diagnosed with Memory Impairment, Amnesia and Stuttering too a few years ago.  Also diagnosed with Paroxysmal Tachycardia too a few years ago.  This all explains why I'm so sick now.  The drugs have damaged me severely.   

It's weird I have, all the things you have and I actually am getting those blood tests next month for the clotting factors.  Do you bruise easily ? I developed raynauds during withdrawl or as a reaction to buspar, not sure which .

 

Yes I do bruise easily.  Sometimes I get bruises and I don't even know how I got them.  One time I fell off a chair backward after changing a lightbulb and I have a very dark bruise on the inside of my upper arm that was about 6" long and 3" wide.  I also break blood vessels in my fingers when I'm outside just using the padded grass shears.  My theory is that these benzo's and Z-drugs damaged our nervous system and our nerves innervate our blood vessels too much and damage them.  Are the veins on the back of your hands and legs ballooned?  Mine are.  Hopefull01, Joey, on this forum complained a few months ago on his blog about how his feet were purple and he believed his blood was pooling in his feet.  Mine used to turn beat red when I'd sit on them and if I even try to now, they go numb.  Circulation problems for sure.

 

I do also bruise and no idea what from, I also get popped vessels in my hands and sometimes I've even seen them come up and then pop. It's so nor normal, do you think we'll be ok? I also have pooling and I can tell circulation is way off..sometimes I wake up and it feels like there's no blood in my upper body and I have to shake until there is, also not breathing well during it.  So sick of being afraid. Really scary. Spo2 drops. Notice my bp gets very low also, and I can tell because of my vision

 

Get that ANA blood screening test done and let me know the results.  I got better and you will too, so don't worry.  I don't have the beet red feet anymore and the numbness has pretty much gone away.  I have blood disorders that run in my family, so it's genetics for me and the benzo's made it worse.

[[Li...]]

JBen,

Thank you so much for all your encouraging kind words. I greatly appreciate it! It's nice to know that you understand what I'm going through but I'm so sorry that you've been living it. I sure would like a break it wears you down. This whole process really does. Looking to the Future for better days for both of us.

 

Leann,

Thank you for the suggestion about the show it sounds really good. I am unable to watch television because of sensory issues. It's really frustrating because I know it would be a wonderful way to distract.

 

Stitch,

I'm so sorry to hear about what those doctors did with the medications. It's definitely criminal! I so appreciate your kindness and encouragement. Sometimes it's just so hard to hang on. And I know you understand.

 

Lisa,

That is so sweet of you to keep me in your prayers. I do the same for you. We all need all the help we can get. I always pray for strength, positivity and endurance.

 

Pashu,

I hope you start feeling better very soon. It's so crazy that laying down watching television sounds good to me. I have difficulty doing either of those things. But I'm sure for you it's not the most enjoyable. We all have our limitations and things that we're struggling through.

 

Sending big big hugs to everyone!

 

LiveLife

[[La...]]

Pardon me, I'm writing for my own sanity at times and didn't mean to blow into you all group but I just am so at a loss, i was in such physical pain and now I feel so foggy, I wake up and it's like I don't even know how to function really, new achey legs , not sure why , hip to toe, feels like I'm low on potassium or sowmthing but am not. Feel gait is unsteady and have muscle twitching, tight jaw, sigh.  The issues with this is that the changing of symptoms always seems like it could be an emergency

Hello Fox, it’s ok that you popped in. In this journey we need all the support we can get. So you’re welcome here. Your symptoms are believe it or not….normal under the circumstances. And yes it sucks and feels like it could be an emergency. We all have been there. It is just your brain trying to figure out how to return itself to normal balance. You’re still on medication so these things you’re experiencing are to be expected.

What I can suggest if you’re having trouble with cog fog is get a notepad to write down what you want to accomplish hour by hour. Check them off as you get it done. This scheduling helped me a lot. Hope you feel better soon. Big hugs. 🤗

[[La...]]

Good Monday Morning Fellow Buddy Friends😍.  I have been somewhat MIA for a couple of reasons:  trying to get my poor hubby through a case of the shingles, and an onset of neck, shoulder and arm pain.  Quite the ordeal between his meds and a recent X-ray, now to be followed by an MRI:  it is suspected that on top of some pretty bad arthritis he may have a pinched nerve!  He is finally feeling somewhat better after a six day course of prednisone.  He has also been able to take an antiviral, a week of gabapentin, and prednisone, only to suffer a little stomach upset……I am happy for him, but sure wish that we all had better luck with so many drugs.  Anyway, he is now all set for the time being.

 

As for me, I have been doing quite well until yesterday when I started with the female symptoms again, after having been treated for a UTI just a couple of weeks ago.  I feel like the yeast infection may be trying to take over which worries me as I am scheduled for the uterine biopsy this coming Thursday.  I am drinking lots of water and praying that these symptoms fade away quickly.  The one dose of Diflucan I took three weeks ago zapped the yeast infection quickly.  It seems as if my whole gut and female systems are out of whack.  I think I will stop the heavy duty probiotic and see if that helps. So that is my story and I am sticking to it!

 

I am saddened to read that there are still quite a few buddies going through the misery of BWD, all pretty much in the same timeframe.  When I feel awful I just go back and read over and over again the success stories to calm myself down.  Does it get rid of my symptoms…..NO!  But does it allay my fears that my mental and physical pain is forever….YES! 

 

So, we soldier on, one little step at a time.  That’s all we have to do…..step step step!

 

Big hugs,

 

GG

GG it’s great to hear from you. I was aware that you were dealing with issues at home so I figured it was why you were MIA. Glad to have you back dear sweetheart! I hope your hubby feels better and good to hear that he’s more stable. As for you, I would really hate to hear if you had another UTI. You’ve been through the ringer with urinary issues. Hopefully this is the last time and you don’t have to deal with that anymore. I also read the success stories from time to time as a reminder that this is just a phase of my life but will pass. As you said, we take the bitter ( waves) with the sweet ( windows) and we soldier on. I often think of what Dr Ashton said “ symptoms are just that, symptoms! They will wax and wane unpredictable but are serving a purpose of the return of homeostasis of the brain. Over time they will fade. Some might circle back around showing up milder and shorter visit than before. Healing is happening. “

She’s absolutely right! This has been the case for me as well. In a wave I’ll have some old symptoms I haven’t seen pop up mildly for a quick visit then poof gone! What makes this wear us out mentally is the nonlinear process as well as the slow yet lengthy time it takes to heal. Oh well…..at least it CAN and WILL heal. Onward we go to put another day behind us.

Happy healing wishes to you dear lady! ❤️❤️❤️❤️

[[La...]]

Hope you are all doing OK, still struggling bit here. Sort of in acceptance mode at moment, realise this takes as long as it takes, trying to distract is good, but trying keep fighting it , or pushing yourself too much, doesn’t make you recover any quicker, I just end up more frustrated and depressed. Try keep remembering what Jennifer Leigh said everyone recovers regardless whether  you think you will or won’t, but obviously if you are more positive person like Lady Den helps the journey, and makes everyday life more tolerable. But for those of us struggling, who find positivity hard ,believe me  with mental symptoms it’s super hard, it doesn’t mean we won’t recover. My words wisdom for the day😃

 

Leann i am so sorry you continue to struggle with these mental symptoms day after day and for so long. I am right there with you.  Your words of wisdom resonate with me this morning.  All we can really do is accept, distract, be as positive as our symptoms allow, and wait it out.  You are truly a warrior.  After dealing with these symptoms for as long as you have, I can dare say you are one of the strongest people on earth.  Hugs to you and hope you have a better day today!

 

I totally agree! Leann you are a very strong person! I admire that. And you are too JBen.

It is true that no matter if we believe in our healing or how positive we are, time will heal us anyway. But, positives can help ease the journey. It has kept me from breaking apart. This is sooooooo hard to endure. I’m very grateful that atleast I had that positivity to get me through each day.

 

 

 

 

 

 

 

 

Don’t feel very strong, after all my moaning, and I absolutely agree if you can stay positive it does help you get through a lot easier. Just those of us with mental symptoms it is lot harder, and wanted reassure others it’s OK, not to feel very positive sometimes. Doesn’t make us weaker, or a case we aren’t fighting enough, or should push ourselves more , the journey is different for all of us. But if you can find positivity so much the better. Lot focus on mental health here after lockdowns, the slogan is “ it’s OK not to feel OK” quite apt. Keep spreading the positivity LadyDen, hopefully it will rub off. Got cross the ocean mind you to get to me❤️

I’m sending the positive fairy 🧚‍♂️ your way my friend. May your day be much better today.

❤️🌹

[[La...]]

Lisa,

 

Thank you so much! So glad to hear you're doing better today. It all does make sense that I'm doing deep healing and I'm hanging on to that thought. But thank you for saying that, I need to hear it. Today is one of those days that I'm taking an hour at a time. Maybe tomorrow will be better for me and even better for you. That would be wonderful!

 

Fox,

I'm so sorry to hear of your struggles. I really understand. This whole process can really be frightening. You are healing. It doesn't feel like it but you really are.

 

Hugs!

 

LiveLife

Live  I think we all are having deep healing at the same time. Together we fight on. All we have to do is get through today and prayers going up that tomorrow brings much awaited relief. Hang in there! This too shall pass.

🌹❤️🙏

[[Pa...]]

JBen,

Thank you so much for all your encouraging kind words. I greatly appreciate it! It's nice to know that you understand what I'm going through but I'm so sorry that you've been living it. I sure would like a break it wears you down. This whole process really does. Looking to the Future for better days for both of us.

 

Leann,

Thank you for the suggestion about the show it sounds really good. I am unable to watch television because of sensory issues. It's really frustrating because I know it would be a wonderful way to distract.

 

Stitch,

I'm so sorry to hear about what those doctors did with the medications. It's definitely criminal! I so appreciate your kindness and encouragement. Sometimes it's just so hard to hang on. And I know you understand.

 

Lisa,

That is so sweet of you to keep me in your prayers. I do the same for you. We all need all the help we can get. I always pray for strength, positivity and endurance.

 

Pashu,

I hope you start feeling better very soon. It's so crazy that laying down watching television sounds good to me. I have difficulty doing either of those things. But I'm sure for you it's not the most enjoyable. We all have our limitations and things that we're struggling through.

 

Sending big big hugs to everyone!

 

LiveLife

Thank you, Stitch and Livelife. Watching TV is not necessarily enjoyable for me as it is more of a medium to kill time. I can't really watch the things I like, nor would I want to in my current state. Only thing I watch is lighthearted and slow-paced stuff because anything else just throws my brain for loops or causes anxiety and is far from enjoyable. It's so weird lol. Much love to everyone today, keep going!

[[La...]]

 

Stitch, please excuse my “ French”……what a sick bastard that quack is!!! I’m not going to call him a doctor because he doesn’t deserve that title! Low down f*&#%+! It makes me so mad! Unfortunately this has happened to many many many patients including us. Ruining people’s lives for money. Yes I said it! That’s all they care about. They know certain things won’t help but play mind games to get patients to believe it magically will. Look how long ago Dr Ashton came public with this. So you mean to tell me that they don’t know? Bull butter…yes they do! I personally have had two experiences to where a medical professional accidentally let it slip that they knew. I’m still pissed about that.

I hope you heal quicker and walk into the sunshine of your new life. Love and hugs 🤗

Oh my goodness! Two doctor let it slip? I can't believe it, how horrible. I hate seeing so many people suffer because of greed. I hate seeing people suffer at all.

 

It felt surprisingly good to hear what you said, when no else would listen. I thought evidence was in my favor. They should make it easier to get rid of corrupt doctors.

But let us move forward into better places.

Yes we all have learned a valuable lesson dealing with the medical profession unfortunately the hard way. And in my case, the only medication I was on was Ambien ( zolpidem) so they couldn’t deny it.more than half my symptoms disappeared overnight as I tapered. Wow! I guess I’m just one of the unlucky ones genetically so that it did much injury to. But, I’m telling you I thank God often that I’m improving. We all will heal from this. It’s slow as a snail but as long as it will heal then I’m accepting the lengthy process. What else can I do?

Sending you happy healing vibes! ❤️🌹 Keep the faith!

[[La...]]

decatur

I am glad you are able to take a breath. God knows how precious that is. I hope things stay low key. Keep us posted. Healing is happening in the background!

 

foxclover

I am sorry you are in so much pain. People say mental is worse than physical. But the truth is, any symptom is as bad as any when taken to its extreme. I am sorry this has been so debilitating. I'm sorry your muscles are giving you pain. I wish ice and heat packs could take it all away. The fog on top of the physical symptoms it is so unpleasant. It's withdrawal playing mind games. Posting is good for the soul.

 

Pashu

I had no widows for the longest time. I thought without windows and waves how can I get better? I found a few other like me. The said they slowly healed over time. Don't believe those thoughts. Healing comes.

i

Gardenguru

Its good to see you again. I am glad your husband is feeling better. I understand gut issues, I am about to try an enzyme soon and scared out of my wits that it will set me back. Yeat infections are a stress. I am sorry you are dealing with one. Sitting in a bath with 5 cups of epsom salt for half an hour always helped mine. I would do that a few times throughout a couple days. I found out later it is a natural destroyer of yeast. Hang in there

 

Leann

Ha, never recover with a negative attitude? pish posh.  It was impossible for me not to have one, my depression was one of my symptoms. I would keep saying positive things to myself (as one should) but didn't feel it. And I improved. And now that I am more positive I am waiting again. So that sounds like a blanket statement. Im sure positivity helps i many ways, but it is not the cure. You're a hell of a person. Whether you have positivity or not.

 

Lady Den

Thank you for all the support you give. I hope you are doing ok yourself. Last I read you got hit with a bit of a wave. Hope that is better. How are you doing now?

 

JBen

Good to see you. How are you doing. I hope you had some good moments. I must have missed a few of your post.

 

LiveLife

You deserve more words than I can type. Sorry my pain is getting bad. But keep hanging on. Don't look toward the bad. There is a way out even if you can't see it. If you keep going forward you will find it.

 

Man, It seems like the planets align in such a way that many of us got hit at the same time.

To anyone I missed, keep going and healing to you all.

Very sweet of you Stitch. Yesterday was better than the past 3 days. So we’ll see how today goes. So far it’s not too rough…not good but doable. I think I’m seeing a pattern here of about 3 days awful and the rest less intense with short windows during the day.

How are you?

[[He...]]

LD, I'm glad you are a little better today.  I hope it holds.

 

XO

[[Fo...]]

Pardon me, I'm writing for my own sanity at times and didn't mean to blow into you all group but I just am so at a loss, i was in such physical pain and now I feel so foggy, I wake up and it's like I don't even know how to function really, new achey legs , not sure why , hip to toe, feels like I'm low on potassium or sowmthing but am not. Feel gait is unsteady and have muscle twitching, tight jaw, sigh.  The issues with this is that the changing of symptoms always seems like it could be an emergency

Hello Fox, it’s ok that you popped in. In this journey we need all the support we can get. So you’re welcome here. Your symptoms are believe it or not….normal under the circumstances. And yes it sucks and feels like it could be an emergency. We all have been there. It is just your brain trying to figure out how to return itself to normal balance. You’re still on medication so these things you’re experiencing are to be expected.

What I can suggest if you’re having trouble with cog fog is get a notepad to write down what you want to accomplish hour by hour. Check them off as you get it done. This scheduling helped me a lot. Hope you feel better soon. Big hugs. 🤗

Not on any medication,  I really believe there's something else going on with me, but idk anymore. Thank you for suggesting,  I'm so down. I just feel like everything is pointless.

[[Li...]]

LadyDen,

Thank you so much once again for the positivity and encouraging words. So happy to hear that you are seeing improvements. That is wonderful!

 

To all my beautiful Buddies,

Yesterday I hit the 26-month mark. Was really hoping for some improvement by then but not yet. I actually have just lived through another groundhog night and morning so far. Hoping things can change soon. Hope you are all having a window day.

 

Sending warm love and healing hugs to everyone,

 

LiveLife

[[He...]]

Live Life,

 

I'm thinking of you! I'm sorry your journey is so long and arduous.  I hope you get some relief VERY soon. 

 

Hugs,

Helen

[[Li...]]

Helen,

 

Thank you so much for the encouraging words. I do hope I turn the corner soon it's so hard to hang on. I wish you many windows. Hugs!

 

LiveLife

[[La...]]

LD, I'm glad you are a little better today.  I hope it holds.

 

XO

Me tooooo! I hope you stay stable too my dear Twin. Big hugs! Love you bunches!

❤️🙏🤗 wrists locked 🤝

[[La...]]

LadyDen,

Thank you so much once again for the positivity and encouraging words. So happy to hear that you are seeing improvements. That is wonderful!

 

To all my beautiful Buddies,

Yesterday I hit the 26-month mark. Was really hoping for some improvement by then but not yet. I actually have just lived through another groundhog night and morning so far. Hoping things can change soon. Hope you are all having a window day.

 

Sending warm love and healing hugs to everyone,

 

LiveLife

Congrats on your 26 month!

Although we both are getting booty kicked, we should be so proud that we’ve got a little over 2 years! Yay! It can only get better from here. I’m not worried about my or your recent slam because I’ve read this is common at our timeframe. But wow it sucks! We will very soon turn a corner….in most cases, the last one! Yay! I pray this is true for us! 🙏🙏🙏🙏🙏🙏🙏🙏 Hang in there, lovely warrior! 🌹

[[Fo...]]

These symptoms always seem like an emergency, twitching that could be caused by electrolyte issues, shaking, headaches that last far too long, feeling like you have dementia, racing thoughts all the time, getting dizzy from looking down, feeling like everything is squeezing and wants to sweat, no peace, no good thoughts, no relief, I need help I am not ok. Freezing after eating, bp dropping, no one ever knows when it's this or something bad and when to go to the hospital.  No one knows these things and so I just suffer through tachycardia episodes brought on by nothing, not thoughts at all just happens and doesn't slow down. I'm worse now than I was in the beginning.

[[La...]]

Pardon me, I'm writing for my own sanity at times and didn't mean to blow into you all group but I just am so at a loss, i was in such physical pain and now I feel so foggy, I wake up and it's like I don't even know how to function really, new achey legs , not sure why , hip to toe, feels like I'm low on potassium or sowmthing but am not. Feel gait is unsteady and have muscle twitching, tight jaw, sigh.  The issues with this is that the changing of symptoms always seems like it could be an emergency

Hello Fox, it’s ok that you popped in. In this journey we need all the support we can get. So you’re welcome here. Your symptoms are believe it or not….normal under the circumstances. And yes it sucks and feels like it could be an emergency. We all have been there. It is just your brain trying to figure out how to return itself to normal balance. You’re still on medication so these things you’re experiencing are to be expected.

What I can suggest if you’re having trouble with cog fog is get a notepad to write down what you want to accomplish hour by hour. Check them off as you get it done. This scheduling helped me a lot. Hope you feel better soon. Big hugs. 🤗

Not on any medication,  I really believe there's something else going on with me, but idk anymore. Thank you for suggesting,  I'm so down. I just feel like everything is pointless.

I’m sorry I thought you reinstated. My apologies I read your signature wrong. You know many think it’s something else going on. Most people go from doctor to doctor and test after test come back normal. They have to conclude that it’s WD. Nothing will fix us but time and self love. Although sometimes while going through this, there are other ailments that pop up that needs to be addressed. But, I still believe most of those pop up ailments are caused by our CNS going crazy/ being injured. This makes our immune systems, endocrine systems, digestive, cardio, muscular etc all be out of whack. For example, because this weakened my immunity, I got a bad case of oral thrush while going through this. I had to go to the doctor for treatment ( Nystatin). It’s what they give to babies who have this. It worked very well with no impact on revving up symptoms. I’ve even gotten UTI and a cold. Could I have gotten those anyway, yes! But because of weakened immunity they were not my normal level of severity.

So, please don’t feel everything is pointless. Your brain has been through so much back and forth with your medications. It needs time to sort itself out. You know what? You did a good thing coming off your medication. You did what you thought was best for you. That’s not pointless at all. Be proud of being your own advocate. I think you’re very brave! Also those who CT as you have tend to have it a little bit rougher because of the sudden removal of the pills. That’s not a light thing for the brain to handle. Right now it’s hard at work repairing. Just know you’re not alone. We support you. A little more TLC and distracting as much as you can will go a long way in this. Believe me, I know because I’m getting my butt spanked since turning 2 years. But, onward we go. One day at a time. Hugs 🤗

[[La...]]

Deanna where are you! I miss you my dear. Hope you’re feeling good and having fun. Pop in to let us know.

❤️❤️❤️❤️❤️

 

To all of us struggling right now……wow! We know how this goes, right? We’ve reached another loop on the roller coaster 🎢 It may be our last one so HOLD on! We can make it! All roller coasters come to an end, right? I’m keeping that in mind as I try a walk today when I get a window. I’m in much need of a little sunlight. I haven’t been outside in nearly a week….probably has been a week. Wow! Ok Yearlings we got this! One day at a time.

 

:smitten: :smitten:

[[La...]]

These symptoms always seem like an emergency, twitching that could be caused by electrolyte issues, shaking, headaches that last far too long, feeling like you have dementia, racing thoughts all the time, getting dizzy from looking down, feeling like everything is squeezing and wants to sweat, no peace, no good thoughts, no relief, I need help I am not ok. Freezing after eating, bp dropping, no one ever knows when it's this or something bad and when to go to the hospital.  No one knows these things and so I just suffer through tachycardia episodes brought on by nothing, not thoughts at all just happens and doesn't slow down. I'm worse now than I was in the beginning.

Fox 

You sound miserable sweetheart. Is there any way you can lay down in a dark quiet room with soothing ocean waves music to focus on? A weighted blanket can also help while you meditate. When I was in acute,this saved me many times from calling an ambulance. Most of the time, if you go to the hospital they won’t do much except try to give you more benzos or psych drugs. But if you feel it necessary then go. But I will say that your symptoms are common ones in WD. Time will make them better. So, IMO it’s better to pull out all of your coping skills right now. Things you know can calm you or soothe you. If you have to use them all day then do that! It’s ok. You will be alright. I wish I could hug you. 🤗

What helps slow down your heart rate is laying on your left side with knees bent pillow between them. Take a slow deep breath in for a count of 5. Hold your breath for for a count of 4. Exhale slowly through the lips for a count of 7.  Repeat 3 times then breathe normally for a few breaths and repeat the controlled breathing.

What this does is taps into the parasympathetic nervous system that regulates heartbeats. It calms it. When I had palps and racing episodes this worked like a charm!

 

[[De...]]

Hello Everyone!  I'm sorry I haven't been around very much, but I have been getting on with life.  I have started walking in the morning every other day or so and I think it is helping me.  My symptoms are very subtle now, mostly in the late PM and evening just before dinner.  Then they subside again as I relax and watch TV.  Yes, I am RELAXING again after all this time!  I am gardening and have more energy to socialize.  I am hopeful for the future and sticking to my clean diet, good sleep habits and limiting stressful interactions.

 

I came to say hello and I am sorry to see how much suffering many of you are still going through  :'(

I know your suffering all too well, and I wish for each and every one of you that healing will accelerate and close out this horrible experience for you.  I cannot bring myself to call myself healed, because I truly feel that if any new and extreme stress comes along it will most definitely stir up my symptoms.  I do believe that one day in the future I will truly be past all of this, but the last part of healing I think is to just go about your business and not let the lingering issues bother you much at all.

 

I had a cup of camomile tea about a week ago and it went fine.  I am looking forward to adding a vitamin D supplement and magnesium and zinc to my regimen, little by little.  I rest when I'm tired, but I think I see the light at the end of the tunnel.  I hope these words don't come home to bite me LOL.

 

I will continue to pop in from time to time to see how you are all doing.  This is my favorite thread - I hardly ever look at any of the others.

 

May you all be blessed as you make your way towards your final healing 

[[Li...]]

Hello to all my beautiful buddies,

 

Dea,

Just want to tell you I'm so happy to hear how well you are doing. It really is encouraging. I sure hope to be doing as well someday. Wonderful to hear from you.

 

LadyDen,

Once again I have to thank you for the encouraging words. I so need to hear them. I too have read of those hitting the 2-year mark and coming into a big wave and then some good healing happens. So hoping for that for the both of us.

 

I'm still having a groundhog night and day. Nothing has changed yet. But I'm trying to stay hopeful.

 

Sending big hugs to everyone!

 

LiveLife

[[Be...]]

Fox, when I was off the pills about the same time as you are now, I did go see a doc and he checked my heart and diagnosed me with Paroxysmal Tachycardia.  I'd suggest you go get a thorough checkup from a doc and have some bloodwork done.  It's dangerous to always say that everything is benzo-related, because not everything is.