12-24 months and up support group

[[He...]]

Deanna,

 

How kind of you to respond!Thank you for that.  I'm sorry you have had Covid and all accompanying nastiness that entails.  Getting any sort of virus really cranks up our WD symptoms for sure.  I appreciate knowing your experience. I'm also gluten free.  I have to be really careful what I eat. You are really so right about keeping our gut health in check.  I keep working on that myself. Mine is much better than it used to be in the early days of all of this but still imperfect.  I'll get the bloating out of nowhere on occasion.  I'm dealing with an abundance of the burning and tingling these days and some more balance issues that I thought had left me.  Sigh.  I will continue on the path. 

 

I sincerely hope you are MUCH better well before next summer. You've been at this a long time. 

 

Thanks again,

Helen

 

[[Ga...]]

Hi Helen.  I checked back to my one year mark, and I was posting about feeling awful with headaches and the benzo flu. However, I had just had my first Covid vaccine, and I remember my doctor telling me that I was most likely having a bad reaction to it.  I was in a wave that lasted about two weeks then had a good window for a few weeks time.  I know this does not help much, but I seem to follow a weird pattern of a few weeks in a window, then a few weeks in a wave.  Very nonlinear!

 

http://www.benzobuddies.org/forum/index.php?topic=168893.msg2253635#msg2253635

[[Ga...]]

The link at the bottom of my last post is the thread shared amongst buddies regarding awful body odor, which is a real thing!  Some of the post are really funny, so a good laugh might be a little help today!

[[He...]]

GG!

 

As always you are so generous with your experience and insights.  Thank you for sharing with me.  I haven't had a recent booster or any sort of vaccine but maybe it's just weather patterns and where I'm at in my recovery.  Not a fun stage, I have to say but I'll keep trudging forward.  THANK YOU friend.

 

 

I only hope that YOU can feel better soon. 

[[Li...]]

Helen,

Hi there. Honestly I haven't had too many windows myself. But I do remember at the 12-month mark getting a bad flare up, I ended up becoming very sensitive to MSG and it would cause severe breathing issues if I ate it, very scary. And the benzo asthmatic cough that I developed had gotten much worse, as well. So, I guess yes to answer your question things did get worse. But honestly I've been struggling quite a bit all along. I sure hope you feel better soon.

 

Hugs!

 

LiveLife

[[He...]]

Live Life,

 

Thank you to you also for sharing your memory of the year mark.  I'm so sorry you haven't had breaks at all.  I understand. I started feeling "ill" in late 2008 and spent years trying to figure out why.  Duh...it was the meds.  I've not felt like myself in 14 years. I have had some decent times in there but since coming off the meds entirely, it's been slow going and sort of a roller coaster ride.  I surely hope your day is coming soon.

 

Thank you,

Helen

[[Li...]]

My dear buddies,

 

It looks as though there are some that are struggling right now. My heart goes out to all of you. I am in the most severe struggle that I've had yet. I cannot believe how bad I've gotten in the last couple of months and recently it's been even worse. Old symptoms returning and feeling worse than ever. I sure hope this means that there's deep healing going on because it's very hard to hang on. I'm so hoping to make a positive post that things are improving for myself. I'm sorry to be a Debbie downer. Sending warm love and healing thoughts out to all.

 

LiveLife

[[Li...]]

GG,

 

I sure hope you get that infection cleared up soon. I know it must be horrible getting symptoms that remind you of acute. I've been kind of in the same place myself and it definitely is terrifying. Wishing you a speedy recovery! Hugs.

 

LiveLife

[[Ga...]]

Thank you, LiveLife!  My one and most fervent wish today is that you will find yourself in a window very very very soon!  That is my only hope and wish for today!  You are a truly wonderful person, and I would love to break bread with you anytime, anywhere, anyhow🥰🥰🥰🥰🥰🥰🥰🥰

 

Hugs,

 

GG

[[Li...]]

GG,

Thank you so very much! I feel the exact same way about you. Big Hugs!

 

LiveLife

[[Pa...]]

Does anybody ever get windows in relation to the head pressure stuff?

[[de...]]

LiveLife:

 

Oh, how I wish we were healed - all of us.  I am so sorry you are struggling!!!  It is so very hard to hang in there and continue to stay positive. 

 

I know you have some great days ahead of you!  In the meantime, I will be praying for you!  Are you able to distract at all?  What do you do with your time? 

 

What are your main symptoms?  Do you have support at home?

 

I am in a really bad spot myself currently.  I jumped in March 2020, so I am a little ahead of you.  I was doing great in Feb/March/April.  Since May I have been struggling and the last week has been wretched.  My main symptoms are insomnia, anxiety (through the roof), muscle pain, sweating, nausea and diarrhea.  Lots of fun ones!!!  In April I actually thought I might be completely healed.  I debated whether or not to do a success story.

Now I am back to reading success stories and hanging on for dear life!

 

Hoping like crazy that you will get a window soon!!!!  It is coming!!!

 

Decatur (Lisa)

 

 

[[Th...]]

Hi,

 

Thanks so so much - I really appreciate your help.

 

Anything that would help tyysbsnxiety woukd he a bonus.  I haven’t tried magnesium yet.  I’m looking into Gabaoentin - what dose did you start at?  I think the zyprexa is helping but it’s a very low dose & I think it may need to increase? The zyprexa isn’t helping with anxiety but is helping with sleep - but gabapentin will do that too.  I see a psych on Thursday.  I definitely have a mood disorder after I hit my head.  I hit my head on sharp glass that was on the bottom of my bathroom cabinet door - on the top right hand corner - I was half asleep so I kept pressing up which was pretty stupid.  Whoops.  I’m in oerimemoosuse though so this makes things extra fun (not).

 

I’m at the point of trying anything in order to be functional again.  Fingers crossed.  Any help

Is gratefully appreciated.  I hope you’re doing ok )

 

I don't think you have a mood disorder. I think you just have withdrawal and hit your head. I know people get a lot of symptoms if they hit their head near the frontal lobe.

I was started on 300mg twice a day, once in the morning and once it the evening.

 

But Gabapentin is no joke. You are risking having a bad reaction to it. If it is life or death I understand. But I would take magnesium for a few days as there is less risk and it is known to help anxiety.

 

Hang in there

[[Th...]]

Livelife

I am so sorry you are going through such a wave. Hang in there.

Push through this wave. There has got to be something better on the other side.

 

Decatur

You too. Anxiety is bad and insomnia makes everything worse. I know you are hanging by your finger nails.

 

I wish I could reply to more of you but it's been a morning. My energy is low.

 

 

[[La...]]

Does anybody ever get windows in relation to the head pressure stuff?

Yes it’s common.

[[He...]]

Does anybody ever get windows in relation to the head pressure stuff?

 

Pashu, for years on the meds I had nearly constant head pressure and migraine.  In the last 6 months or so, I've had a big decline in frequency and intensity in that symptom.  I still get some head pressure and can feel it in my ears but yes, I have more windows than waves in that area.  Other things have gotten worse, but the head pressure has improved.

[[La...]]

LiveLife:

 

Oh, how I wish we were healed - all of us.  I am so sorry you are struggling!!!  It is so very hard to hang in there and continue to stay positive. 

 

I know you have some great days ahead of you!  In the meantime, I will be praying for you!  Are you able to distract at all?  What do you do with your time? 

 

What are your main symptoms?  Do you have support at home?

 

I am in a really bad spot myself currently.  I jumped in March 2020, so I am a little ahead of you.  I was doing great in Feb/March/April.  Since May I have been struggling and the last week has been wretched.  My main symptoms are insomnia, anxiety (through the roof), muscle pain, sweating, nausea and diarrhea.  Lots of fun ones!!!  In April I actually thought I might be completely healed.  I debated whether or not to do a success story.

Now I am back to reading success stories and hanging on for dear life!

 

Hoping like crazy that you will get a window soon!!!!  It is coming!!!

 

Decatur (Lisa)

So sorry. I’m in the same boat. Until a few days ago I was doing well with making progress. Got slammed and feeling frustrated. But I know it’s part of it. I also am having a lot of stress due to serious family issues. So I’m not surprised that it’s affecting me. I’ve done all I can to avoid stress but it’s others who are inflicting me with it. All we can do is wait it out while doing our best to self care until we are healed.

Wishing you better days 🤗

[[La...]]

I’m thinking of you all that’s going through rough times. I’m in the same club. Ughhh I wish we just heal already. Wouldn’t that be nice!

I’m having a very stressful time with my family issues again. It seems as soon as everything is settled then another hit comes. It makes it so much harder to recover because they cause upticks in symptoms waves and setbacks. But we still have to deal with issues that arise. It doesn’t care that we are trying to recover. It’s a lot to handle at the moment. I’m just trying to hold on to do my best to not let it get the best of me. So heartbreaking!

Sending love and hope you have a beautiful day.

[[Li...]]

Lisa,

Thank you so much for the encouragement. Oh how I wish we were all healed too. This is just too much. As far as distracting when I'm this bad there isn't much that I can do. I do have good support, my husband is very understanding for the most part, at times he gets really stressed out though. My symptoms have been absolutely horrific some have returned and others have flared worse than ever. I have intense chemical fear which keeps me awake at night and wakes me up if I get to sleep. Chemical depression, tingling in the whole left side of my body with intense pain, nausea and at times it feels like I've been punched in the stomach, headaches with jaw pain that come and go and those are horrible, tinnitus, heart palpitations. I can't believe all these symptoms have been barraging me.

 

Are you able to distract at all? If so what do you do for distraction? Do you have any good support at home?

I'm so sorry to hear you were hit was so many symptoms yourself. I sure hope you get a window very very soon and get back to feeling like you can write your success story as you once felt. Sending you big hugs!

 

LiveLife

[[Li...]]

ThatOneGirlStitch,

 

Thank you so much for the encouraging words. I sure hope so! Hugs.

 

LiveLife

[[Li...]]

LadyDen,

 

I'm so sorry to hear that you're in a bad wave. I know it isn't easy when you're trying to deal with stress that definitely can flare things up. I hope you're stress settles down soon and you pull out of this wave into a beautiful sparkling bright window. I wish that for you and all are beautiful benzo buddies. Hugs!

 

LiveLife

[[La...]]

LadyDen,

 

I'm so sorry to hear that you're in a bad wave. I know it isn't easy when you're trying to deal with stress that definitely can flare things up. I hope you're stress settles down soon and you pull out of this wave into a beautiful sparkling bright window. I wish that for you and all are beautiful benzo buddies. Hugs!

 

LiveLife

:smitten: :smitten: :smitten:

As always so sweet. I wish the same for you.

[[de...]]

LiveLife:

 

Hey there!  Thanks for your encouraging words.  Actually our symptoms sound a lot alike.  I don't have tinnitus or the insense pain on the left side of my body, but about everything else you mentioned.    Today I have had lots of heart palpitations.

 

I am able to distract.  I do lots of stuff around my house and will run an errand or two if my anxiety will allow.  I am on my computer quite a bit.  I do have some support at home.  My daughters are traveling this summer so they are not at home which is probably a good thing.  One is 18 and the other 20,  and it can get a little stressful when they are home.    My husband tries to be supportive, but he is so frustrated with this and doesn't understand why it is taking so long.  He is always telling me things to "do" to help me get better.  That is a little frustrating for me, but I listen. 

 

How long has this wave been going on for you?

 

[[De...]]

LiveLife:

 

Hey there!  Thanks for your encouraging words.  Actually our symptoms sound a lot alike.  I don't have tinnitus or the insense pain on the left side of my body, but about everything else you mentioned.    Today I have had lots of heart palpitations.

 

I am able to distract.  I do lots of stuff around my house and will run an errand or two if my anxiety will allow.  I am on my computer quite a bit.  I do have some support at home.  My daughters are traveling this summer so they are not at home which is probably a good thing.  One is 18 and the other 20,  and it can get a little stressful when they are home.    My husband tries to be supportive, but he is so frustrated with this and doesn't understand why it is taking so long.  He is always telling me things to "do" to help me get better.  That is a little frustrating for me, but I listen. 

 

How long has this wave been going on for you?

 

Hey Decatur - Just wanted to say that I had such a difficult time with my husband especially in the beginning.  Of course he just couldn't understand what we are going through - we look fine to them.  He is the kind of guy who was brought up to "rub dirt on it" and get on with life.  His theory about my symptoms were that I was making it all worse by focusing on them.  While there is some truth to that - we are flooded with these awful symptoms and it is just not possible sometimes to just "deal with it".  It has really impacted our relationship.  I'm still not myself and the whole experience has been so traumatic that even if every symptom left me tomorrow, I wouldn't be the same person I used to be.  I'm just so much more serious than I used to be and not much fun at all to be with.  I guess I'm in survival mode all the time.

 

Hope things get better for all of us soon!!!

[[Pa...]]

Does anybody ever get windows in relation to the head pressure stuff?

 

Pashu, for years on the meds I had nearly constant head pressure and migraine.  In the last 6 months or so, I've had a big decline in frequency and intensity in that symptom.  I still get some head pressure and can feel it in my ears but yes, I have more windows than waves in that area.  Other things have gotten worse, but the head pressure has improved.

 

Thank you, this inspires hope. The pain has been really bad the past few days, has not quite been as intense as now and I'm happy with this reassurance. The ability of prescription drugs to inflict so much damage is just hard to fathom.