The Long Hold Support Group

[[ki...]]

Oh Kitsune then we have the same symptom. Mine is also on the side of the head. Lately the right. It's incredible after how slowly I've been cutting. I think in my case it's all glutamate damage from last summer's crash. There's no way such a slow taper could bring all these sxs.

 

It comes and goes for me, right now I’m in a wave and it’s very much present. I’m hoping another hold of a month or two will help lessen it.

 

Kitsune mine comes and goes too. Mostly comes, and it's always accompanied by dizziness and an inability to work as many hours as I should with documents and bureaucracy. It makes me quite disabled for those tasks. It's very scary. I hope you get better and I hope I can also feel better enough to taper again.

 

Thank you Vali. Oddly enough, my partner did massage for me a few minutes ago and it helped the dizziness and burning I was experiencing. He said he could feel a lot of tension in my neck, shoulders, and back (big surprise  ).

 

I hope you start to feel better too. This benzo withdrawal stuff can be truly awful, but we are still here fighting.

[[no...]]

:smitten:

Hi Free have you still got the relentless non stop burning too or is yours getting better? And are you still holding or tapering again?

 

 

                                              Love Nova xxx  :smitten:

 

 

  Nova, Yes I still have the burning nonstop and getting worse and worse.  I have held about a year now so just don’t know what to do.  I’m so terrified but drs only want to throw more meds.  Nothing helps.  Hope you feel better soon but we are both hard cases. 😢😢

 

[[ki...]]

Olive Kitty, the whole state is on fire. I hope your mom stays safe. All the smoke is really stirring up a lot of trauma here due to the big fire we had in 2018.

[[Tr...]]

Hello all,

Not caught up on the posts here but hope you're all doing ok. I think I'm having some mild pots sxs. Not surprised though it's just a little over two weeks since my last cut soooooo.... 🤷

I got breathless playing with and chasing my granddaughter which I always do without issue but this time I became breathless and felt like the air couldn't get all the way down in my lungs. I would have been concerned if I wasn't already familiar with this sx. So I'll be holding until this let's up.

 

Hope to catch up on posting later.

 

Peace and love my people,

Trishy ❤️

[[Tr...]]

Oh my gosh Olive! Prayers going up 🙏🙏🙏

Love ya woman 💕

[[Tr...]]

Hey Ginger,

I was thinking about a post of yours a few pages back when you were speaking about your concussion. You mentioned having trouble with word retrieval. I have that to the extreme. I also have a hard time relaying information or a story to others. For example I was watching the news this morning and my husband called me from work. He asked what was going on the news and there was a segment on the news that I wanted to share with him but just could not for the life of me summarize it for him. I just can not do that! It's so frustrating! I even have a hard time here posting trying to convey what I'm feeling. Very hard to put a lot of what I want to say in words which ends up in too many words in the post bc of massive effort on my part to convey correctly.. Does that make sense?

Anyway I just wanted to know if you go through that as well.

Trishy ❤️

 

Hey Mary,

I hope you're holding up girl. Just want you to know I'm thinking of you. Popped on here early this morning bc I have been up since 3! 🤬 I was freezing cold in my bed from the air conditioning so I ended up just getting out of bed bci couldn't get comfortable again  :tickedoff:

Hope you have a nice day today. 

Ly, TT ❤️

 

Morning LHSG, Hope everyone has a decent day today.

Peace my people,

Trishy ❤️

 

Hi Trishy,

 

Yes, besides word retrieval I still sometimes have what you describe.  Not being able to speak your thoughts.  Very frustrating.  I had neuro-cognitive testing two years after my concussion and scored poorly in four areas.  My neuro-psychologist said they were classic concussion damage.  Things are better now, not perfect.

 

You are about two years from your brain injury, correct?  When I first saw the neuropsych two years after mine, he said he was not at all surprised that I was still having so much trouble.  Even mild TBI's can take years and years to heal.  Also after age 40 your damaged brain areas of the white matter tend not to heal.  Rather the brain makes new pathways bypassing the damaged areas. 

 

So, our age worked against us.  Women are also more likely to develop post-concussion syndrome.  Check out www.brainline.org for lots of info.

My doctor recommended two books, The Brain That Changes Itself and The Brains Way of Healing.  Both by Norman Doidge, M.D.  They contain a wealth of information and some pretty amazing stuff.

 

Today is the third day of bad headaches, dizziness, head pressure and of course the pallpitations which never leave.  I don't know if it's  benzo or my thyroid out of whack.  Conversing and driving today made it worse.  I

Also noticed concentrating on a mending project really ramped up the head pain.  I'm calling and making an appointment with my neuro-optometrist to have my vision checked.  It's been a year.  Maybe I no

longer need the prisims in my glasses.

 

My neuro psych also recommended watching Jeopardy and Wheel of Fortune as well as word find puzzles to help the brain create new pathways.  Jeopardy was impossible until early this year and now I do pretty well.  Before I couldn't say the correct answer even if I knew it.

 

Wishing everyone a good, or at least tolerable, day. G

Hi G,

It's been 3 yrs this summer since my concussion /cervical spine injury. I don't think I mentioned that a cardiologist believed I injured the part of my brain that controls blood pressure. A head injury can also cause Pots too I believe 🤔

 

I notice that I will have some days that are better than others when trying to write or speak. Some days it's like I just zone out, can't converse well can't think well..ahh well you know.

 

Thank you for that wealth of information. I'll check it out.

 

I used to play wheel of fortune like a champ. My husband used to be so impressed :laugh: but now forget it! Lol

 

Also my husband became very good at interpreting what I wanted to say, I would say something like you know " the thing, that thing " and he honestly would be able to say it for me or just intuitively knew what " the thing" was that I was trying to say.  :laugh:

 

Trishy ❤️

[[Tr...]]

Trishy and Ginger, I have the word retrieval problem too. It can be very distressing for me sometimes, but I know it’s the benzos because it was never an issue before and I’m 35 years old. I used to have really wonderful discussions about all sorts of things with my partner and I have such a hard time with it now. Frustrating to say the least.

Yup, totally get it kit. 

[[Tr...]]

Thinking of you Mary, love you! ❤️

 

Hey V, so glad to see you have posted woman! It's always great when your here.  ❤️❤️

[[...]]

That's good advice V. Yes I'll start at 10% and see how it goes.

 

My heart goes out to all of you who are struggling so. I've been there and I know how terrifying and discouraging it is but I also know that's it's temporary. There were times when I felt I just couldn't do this anymore but I can say now that the body has an amazing ability to heal especially when you give it the necessary nutrients it needs.

[[va...]]

That's good advice V. Yes I'll start at 10% and see how it goes.

 

My heart goes out to all of you who are struggling so. I've been there and I know how terrifying and discouraging it is but I also know that's it's temporary. There were times when I felt I just couldn't do this anymore but I can say now that the body has an amazing ability to heal especially when you give it the necessary nutrients it needs.

 

Ahhhh IDK Jwl. I've been holding for so long now. And I really can't afford to risk more symptoms. My life is challenging enough as it is. Some people just can't come off. Time will tell. I'm very excited that you're going to start tapering!! 

[[...]]

That's good advice V. Yes I'll start at 10% and see how it goes.

 

My heart goes out to all of you who are struggling so. I've been there and I know how terrifying and discouraging it is but I also know that's it's temporary. There were times when I felt I just couldn't do this anymore but I can say now that the body has an amazing ability to heal especially when you give it the necessary nutrients it needs.

 

Ahhhh IDK Jwl. I've been holding for so long now. And I really can't afford to risk more symptoms. My life is challenging enough as it is. Some people just can't come off. Time will tell. I'm very excited that you're going to start tapering!! 

 

Don't get discouraged V. You will get off. I went through the worst of it working too and know it can be incredibly challenging.

 

I'm not trying to persuade anyone to start taking supplements as I know some don't react well. But eating right and avoiding the wrong (glutamate rich) foods is just as important. Also, exercising even if it's just walks. Infections and inflammation can stress the body and cause waves.

[[Me...]]

Hi all - I’m somewhat caught up on everyone’s posts.  Sounds like we all got stuff going on.  I’m feeling better after I stopped the coffee and crappy food.  My sxs seem to get worse at night.  Still in a wave.  A lot of it is chronic daily stress related living with my 90 ya old and ever since she fell it’s been harder.  I have no family support and a lifetime of strain between us.  You guys have heard me talk about this over the last year.  I’m so sick of it.  Life stress really affects wd. 

 

Olive Kitty- I haven’t watched the news about the fire.  Half my family lives in Nor Cal.  And as you know I lived in Santa Cruz for a year and SF Bay Area for two years.  I’ve been pretty down in the dumps and isolated (wallowing in self pity) so I haven’t checked with anyone from up there.  I hope all is safe. 

 

Sigh....anyways guys and girls, I’m sending all big hugs.  Big big hugs!  May we all have health and peace and comfort and STRENGTH through this process to keep going.  As far as I’m concerned we are some of the strongest people in this world.  ❤️

 

Love u all,

Meems 😻

[[Me...]]

Woops- I missed the word “90 yr old MOM”.  Benzo brain cognitive impairment.  Grrrrr😾

[[Ma...]]

Mm!

I have GRD. It got bad for a while. Usually it feels like chest pain pre bwd. Now I feel acid and burning. Bad benzo belly. P,us the lack of going the bathroom is awful. I've been taking pepcid. I notice certain foods trigger it. Ly dd

 

I have bad pain in the middle of my chest.  My benzo belly is better right now.  Damn benzo's, you can't get rid of one thing without getting another.  Was yours bad pain?

 

Mary,

 

I have GERD off and on.  It is part of my benzo belly along with gas, bloating and constipation.  For Gerd I eat smaller meals, and stop eating four hours before bed.  Apple cider vinegar in water helps.  It was bad last month.  I took prilosec daily for five weeks then tapered off.  I have heard DGL, a supplement, works well for it.  I gave up coffee and carbonated beverages years ago because I did not want to take gerd meds forever

 

Other good remedies are ginger, I get candied ginger and eat a small piece before meals.  I also raised the head of my bed 2 inches. I hope it gets better soon.  G

 

Thanks G! I raised my bed last night and took my meds 3 hours earlier, I was taking my nighttime dose of liquid Valium right at bedtime, and that stuff is truly nasty, so I thought it might be adding to the issue.  My hubby picked me up some liquid Gaviscon, once I am feeling alittle more secure about it, I will try a supplement  . So far, I made it through last night and today's nap.  I really appreciate all the people jumping on to help me, that really hurts and it's very hard to convince yourself it's not your heart.  Damn benzo's.  Love ya G, hope you have had a decent day.  I haven't read anything yet.

 

 

*************************accidently caused my posts to flip, I should never get on here when I first wake up!!    :laugh:

 

Well, that didn't go as I wanted.  She said my ekg showed some differences from the last time.  Now I have to have a stress test and an echo.  What's worse, between the pics they take of the heart and being on the treadmill, you are there 4 hours  so then going to wait 2 hours and have the echo done.  Sept 10 if I am remembering correctly.  I am one unhappy woman .  The first person we had to pass on some steps, at least outside, had her mask pulled below her mouth, then an extra person jumped on the elevator at the last minute    Very discouraging morning.  I wish I could have gotten the tests sooner so I don't just worry.  Ugh, love you guys.  BBL.  I do have a question, you know I have been complaining about my knee, she said if you can't do the treadmill for some physical reason, they use some kind of medicine.  I haven't looked it up yet, just in case, but has anyone used it before while in wd?  I will do some research later 

Mary 🙋🏼🙋🏼🙋🏼🙋🏼😷😷😷😷🙏🙏🙏😘😘😘😘😘

[[Ma...]]

Hi all - I’m somewhat caught up on everyone’s posts.  Sounds like we all got stuff going on.  I’m feeling better after I stopped the coffee and crappy food.  My sxs seem to get worse at night.  Still in a wave.  A lot of it is chronic daily stress related living with my 90 ya old and ever since she fell it’s been harder.  I have no family support and a lifetime of strain between us.  You guys have heard me talk about this over the last year.  I’m so sick of it.  Life stress really affects wd. 

 

Olive Kitty- I haven’t watched the news about the fire.  Half my family lives in Nor Cal.  And as you know I lived in Santa Cruz for a year and SF Bay Area for two years.  I’ve been pretty down in the dumps and isolated (wallowing in self pity) so I haven’t checked with anyone from up there.  I hope all is safe. 

 

Sigh....anyways guys and girls, I’m sending all big hugs.  Big big hugs!  May we all have health and peace and comfort and STRENGTH through this process to keep going.  As far as I’m concerned we are some of the strongest people in this world.  ❤️

 

Love u all,

Meems 😻

 

I am so sorry you have a living situation that makes you so miserable Meems.  WD is hard enough without all the other things that seem to get piled on.  I hope your family stays safe from the fires, 1100 lightning strikes, that just sounds so scary, and then the fires.    :-\.  I wil be thinking about you girlfriend.  LY, Mary 🙋🏼🙋🏼♥️♥️🙏🙏😘😘😷😷

[[Ma...]]

Olive Kitty, the whole state is on fire. I hope your mom stays safe. All the smoke is really stirring up a lot of trauma here due to the big fire we had in 2018.

 

How close are you to the fires Kit?  Are you in the range of the bad air?  It just seems the fires are getting worse every year.  I hope all you No Ca buddies are okay!!  🙋🏼🙋🏼

[[Ma...]]

Olive kittie I'm praying for that fire to be put off and may your mom and her house be safe 🙏🙏🙏

 

 

Me too OK. 🙏🙏🙏🙏🙏.  🙋🏼🙋🏼

[[va...]]

Thinking of you Mary, love you! ❤️

 

Hey V, so glad to see you have posted woman! It's always great when your here.  ❤️❤️

 

Hi Trishy!

 

Sorry about your pots sxs. However it's amazing how you've come to terms with it and you're not so scared of it as when it started. Exercise is good for us but when we do a lot we suddenly get hit with a wave don't we. For you it's pots, I hope it gets better tomorrow. The past two days I felt better, not great or anything but better. So I walked 15,000 steps on Tuesday and 12,500 steps yesterday, in the forest. That's A LOT for my bwd self but the forest, the birds, the ducks... As a consequence, today I was hit with such an ugly wave. My head is beating all day. Thanks for saying hi Trishy 😘😘

[[va...]]

Mary you're suffering so much, I really hope you get a break soon. The mask wearing on the chin is outrageous. We have plenty of those. You're going through such a rough patch, I guess at some point you'll get a break.

[[Ma...]]

Mary you're suffering so much, I really hope you get a break soon. The mask wearing on the chin is outrageous. We have plenty of those. You're going through such a rough patch, I guess at some point you'll get a break.

 

I am really hoping so.  This is what is so annoying about benzo's, all our symptoms could be different things, this, which is scary, is either my heart or indigestion  :D.  That just sucks 

Wow, you did some walking there girlfriend!!  I hate it caused a wave though.  Hope you feel better soon  .  LY 🙋🏼🙋🏼🙋🏼.  🙏🙏🙏.  😘😘😷😷♥️♥️

[[Gi...]]

Hi all,

 

Question for the group.  I had a steroid injection in my foot one week ago.  On Saturday, two days after injection, I  felt flushed and had a low grade fever for a few hours.  Since then I have had foggy head, feel jittery inside, benzo belly and heart feels like it's vibrating.  Sleep is elusive and I went back to otc unisom, 1/2 tablet which helps.  Its like constant anxiety.  I'm  keeping busy and doing what I can.

 

Is there possibly some issue between steroid and benzos? On the up side, I rode my bike today for the first time in over five years, since before my concussion.  I felt a little wobbly but rode about 16 blocks.  It felt good and I'm going to ride again tomorrow.

 

Honestly, if this anxiety doesn't let up I am considering asking my doctor for an anti-anxiety med to help.  I really don't want to take anything else but I don't know how much longer I caan stand this.  Your thoughts would be most appreciated. Hugs, G.

[[Ma...]]

Hi all,

 

Question for the group.  I had a steroid injection in my foot one week ago.  On Saturday, two days after injection, I  felt flushed and had a low grade fever for a few hours.  Since then I have had foggy head, feel jittery inside, benzo belly and heart feels like it's vibrating.  Sleep is elusive and I went back to otc unisom, 1/2 tablet which helps.  Its like constant anxiety.  I'm  keeping busy and doing what I can.

 

Is there possibly some issue between steroid and benzos? On the up side, I rode my bike today for the first time in over five years, since before my concussion.  I felt a little wobbly but rode about 16 blocks.  It felt good and I'm going to ride again tomorrow.

 

Honestly, if this anxiety doesn't let up I am considering asking my doctor for an anti-anxiety med to help.  I really don't want to take anything else but I don't know how much longer I caan stand this.  Your thoughts would be most appreciated. Hugs, G.

 

G, steroids and benzo's often cause issues.  I am so sorry.  I have read many posts from people talking about it.  Look in the search engine, you will find lots of information.  I really hope the reaction goes away quickly.  LY

[[Tr...]]

Hi all,

 

Question for the group.  I had a steroid injection in my foot one week ago.  On Saturday, two days after injection, I  felt flushed and had a low grade fever for a few hours.  Since then I have had foggy head, feel jittery inside, benzo belly and heart feels like it's vibrating.  Sleep is elusive and I went back to otc unisom, 1/2 tablet which helps.  Its like constant anxiety.  I'm  keeping busy and doing what I can.

 

Is there possibly some issue between steroid and benzos? On the up side, I rode my bike today for the first time in over five years, since before my concussion.  I felt a little wobbly but rode about 16 blocks.  It felt good and I'm going to ride again tomorrow.

 

Honestly, if this anxiety doesn't let up I am considering asking my doctor for an anti-anxiety med to help.  I really don't want to take anything else but I don't know how much longer I caan stand this.  Your thoughts would be most appreciated. Hugs, G.

Hey G,

I just pm'd you and I thought maybe you should Google steroid injection sxs. Also do a search here on BB and see what you come up with. Maybe some helpful advice out there hopefully. 🙏❤️

[[Tr...]]

Thinking of you Mary, love you! ❤️

 

Hey V, so glad to see you have posted woman! It's always great when your here.  ❤️❤️

 

Hi Trishy!

 

Sorry about your pots sxs. However it's amazing how you've come to terms with it and you're not so scared of it as when it started. Exercise is good for us but when we do a lot we suddenly get hit with a wave don't we. For you it's pots, I hope it gets better tomorrow. The past two days I felt better, not great or anything but better. So I walked 15,000 steps on Tuesday and 12,500 steps yesterday, in the forest. That's A LOT for my bwd self but the forest, the birds, the ducks... As a consequence, today I was hit with such an ugly wave. My head is beating all day. Thanks for saying hi Trishy 😘😘

Aww we miss you around here V. Glad you had a better day today. I think a walk in the forest would do me wonders. Although I have the zoo in my backyard. Nature is good for us isn't it?

I hope you have a great day tomorrow and many more great days in your future.

🙏❤️

 

[[Tr...]]

Sorry for everyone suffering here. Hope everyone has a better or more decent day tomorrow.

✌️❤️