The Long Hold Support Group

[[De...]]

It felt like tightness 8n my sternum area. Very uncomfortable.  Sometimes nauseous.  I feel like too the more medicine I take brings it on. It's always something like you say. One goes away and another pops up. The dr could prescribe you something or maybe it's in your diet d

Somewere, I'm sorry it's a craapy sx.

[[fr...]]

  Suzy, Pepcid can cause constipation.  I had to stop it.  ❤️❤️🙏🏼🙏🏼💋💋

[[De...]]

Omt!!! Nooo. I didnt know that.  Maybe ill wean off. Thanks free!

 

[[fr...]]

:smitten:

[[Gi...]]

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

 

 

 

 

[[Ma...]]

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

 

Thanks for thinking of me GM.  That is very interesting.  I couldn't play Jeopardy well before benzo's but I was pretty good at Wheel of Fortune.  I struggle with words or names but they seem to pop back up in just a little while.  I am glad you and Trish have each other to dicusss that .  It had to be scary and having to wait so long for it to begin healing.  Love you both very much!!  🙋🏼🙋🏼😘😘😷😷

🙏🙏♥️♥️♥️

[[ki...]]

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.

[[Gi...]]

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

[[no...]]

Hi LHSG CREW  Anyone else got the itching from hell with dry scaly patches of skin , or any exzema type of stuff cropped up I've had it for a few months now on top of 24/7 burning brain and skin , anyone else  have any of these symptoms and those of you who held and feel better did you have it and how long for before the hold actually helped?

 

                                                                  Love    Nova XXX :smitten:

 

Nova, I have some dry flaky skin on the top of my arms, some lotion and it goes right away.  My husband has some eczema, not from benzo's, but he uses Gold Bond multi symptom psoriasis relief cream and says it works better than the expensive stuff the Dr prescribed.  I have read several other people on bb talking about what you are describing also.  Hope you get some more help.

 

Hey, can I ask you guys a question?  Have any of you had Gerd?  Did it really hurt and what did you do for it?    I am having a lot of pain off and on when I roll on my right side in the bed. 

Hi Mary thanks  a lot  this is a LOT worse than just dry skin my lovely  , my skin tears easily as well as what I wanted to know about below, I hope someone else can chime in that can  actually can answer my few questions  in the below quote :'(

 

                                  Love Nova xxx  :smitten:

author=nova 1 link=topic=153201.msg3121443#msg3121443 date=1597814995]

Hi LHSG CREW  Anyone else got the itching from hell with dry scaly patches of skin , or any exzema type of stuff cropped up I've had it for a few months now on top of 24/7 burning brain and skin , anyone else  have any of these symptoms and those of you who held and feel better how long  did you have it and how long for before the hold actually helped please ?

 

                                                                  Love    Nova XXX :smitten:

[[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:

[[ki...]]

Hi LHSG CREW  Anyone else got the itching from hell with dry scaly patches of skin , or any exzema type of stuff cropped up I've had it for a few months now on top of 24/7 burning brain and skin , anyone else  have any of these symptoms and those of you who held and feel better did you have it and how long for before the hold actually helped?

 

                                                                  Love    Nova XXX :smitten:

 

I have dry scaly patches on my upper abdomen (where the band of my bra sits). It doesn’t itch all the time, but when it does it’s pretty unpleasant. My doctor prescribed a topical steroid for it which worked, but I’m afraid to keep taking it as it ramps up my symptoms. I stopped taking it before the patches completely went away and it came back. I also have burning brain and skin some times, it seems like holding helps it calm down. It took about a month of holding for mine to go away, but it was more annoying than anything else. It came back about a week after I started tapering again after my last hold. I suspect a longer hold would help it calm down more.

[[va...]]

Kitsune, it's so nice to have a young mom in the group. I'm sorry your skin is so itchy. My daughter has atopic dermatitis, and the cortisol cream is supposed to be used one week or two weeks, depending on how much cortisone the cream has as some are stronger than others. I wonder what you mean by "burning brain". I have a lot of weird head sxs. I feel like a balloon was being inflated inside my head. I hope you get better and I'm sure your little boy's love will help you through this.

[[Ol...]]

Mary,

I have had GERD or GERD like symptoms for all of my taper and still do. My Dr. prescribed me Omeprazole and I took that for 3 years, even though the package says not to take longer than 3 weeks. Every western doctor I went to said it was not a problem to be on for long term and every natural doctor I went to wanted me to get off immediately, because it prohibits nutrient absorption and particularly B vitamins and Calcium, and can lead to Osteoporosis. I HATED being on it but I was so scared to get off of it because I heard horror stories about rebound reflux from gettin off of it. I waited until I was done with my taper and then weaned off if it. I am so glad to be free! If you decide to take a PPI, I would recommend only being on it for the recommended 2 weeks.

 

Other than that, I learned that you can buy a wedge pillow so you don't sleep flat, don't eat a lot close to bedtime, and certain foods trigger it like tomato based stuff, peppermint, caffeine, chocolate. DGL was a real lifesaver for me, you can get it at a natural food store or on Amazon. I also take this supplement called MegaGuard by Microbiome Labs that is a combo of DGL and Ginger, I take it if I have heartburn and it usually helps a lot. Sorry you are dealing with that! It sucks! I did get an endoscopy and he said that I did not have GERD or a Hiatial Hernia, so I figured it was just withdrawal, as usual. I still deal with it but not near as bad a s before.

 

So I am really worried guys. There is a HUGE fire happening right now about 18 miles from my mom's house. Our house is in the redwood forest. Thousands of acres are burning and it is 0% contained due to weather and rugged landscape. So scary. I am in Portland now but my mom said it is basically raining ash at the house and all of Santa Cruz is encased in smoke. Please send good thoughts that the weather will change and they can contain this. It is so sad. At least 20 homes have already burned. I am so worried and sad for all of the animals.

 

[[no...]]

Hi LHSG CREW  Anyone else got the itching from hell with dry scaly patches of skin , or any exzema type of stuff cropped up I've had it for a few months now on top of 24/7 burning brain and skin , anyone else  have any of these symptoms and those of you who held and feel better did you have it and how long for before the hold actually helped?

 

                                                                  Love    Nova XXX :smitten:

 

I have dry scaly patches on my upper abdomen (where the band of my bra sits). It doesn’t itch all the time, but when it does it’s pretty unpleasant. My doctor prescribed a topical steroid for it which worked, butI’m afraid to keep taking it as it ramps up my symptoms. I stopped taking it before the patches completely went away and it came back. I also have burning brain and skin some times, it seems like holding helps it calm down. It took about a month of holding for mine to go away, but it was more annoying than anything else. It came back about a week after I started tapering again after my last hold. I suspect a longer hold would help it calm down more.

Hi  kitsune  its  because  steroids and the steroid creams are cross tolerant with Benzos and is to be avoided in withdrawal sweetie , it will get into you system via your skin .

 

 

                        Love Nova xxx  :smitten:

[[va...]]

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

[[fr...]]

: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...]]

Hi LHSG CREW  Anyone else got the itching from hell with dry scaly patches of skin , or any exzema type of stuff cropped up I've had it for a few months now on top of 24/7 burning brain and skin , anyone else  have any of these symptoms and those of you who held and feel better did you have it and how long for before the hold actually helped?

 

                                                                  Love    Nova XXX :smitten:

 

I have dry scaly patches on my upper abdomen (where the band of my bra sits). It doesn’t itch all the time, but when it does it’s pretty unpleasant. My doctor prescribed a topical steroid for it which worked, butI’m afraid to keep taking it as it ramps up my symptoms. I stopped taking it before the patches completely went away and it came back. I also have burning brain and skin some times, it seems like holding helps it calm down. It took about a month of holding for mine to go away, but it was more annoying than anything else. It came back about a week after I started tapering again after my last hold. I suspect a longer hold would help it calm down more.

Hi  kitsune  its  because  steroids and the steroid creams are cross tolerant with Benzos and is to be avoided in withdrawal sweetie , it will get into you system via your skin .

 

 

                        Love Nova xxx  :smitten:

 

Yes, I know steroids and benzos don’t mix. I thought maybe because it was a topical that it might not cause problems, but obviously that wasn’t the case. I haven’t taken it since June and don’t plan to use it again.

[[ki...]]

Kitsune, it's so nice to have a young mom in the group. I'm sorry your skin is so itchy. My daughter has atopic dermatitis, and the cortisol cream is supposed to be used one week or two weeks, depending on how much cortisone the cream has as some are stronger than others. I wonder what you mean by "burning brain". I have a lot of weird head sxs. I feel like a balloon was being inflated inside my head. I hope you get better and I'm sure your little boy's love will help you through this.

 

I was prescribed something other than cortisone, I can’t recall the name at the moment, but I never used it more than a week. The burning brain for me is kind of a weird aching/pressure feeling in the skull. I feel it particularly on the sides of my head. A balloon being inflated is a good description of it.

[[va...]]

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.

[[va...]]

I think I copied the balloon in the head analogy from GP, for the records.

[[Gi...]]

Olivekitty,

 

I'm praying for your mom, home and all facing these dangerous fires.  My brother lives in Ojai.  I have another brother and a sister in Northern CA.  Has your mother evacuated?

 

We seem to be getting a break in the PNW this year, fires yes, but our air quality in my neck of the woods is still good.

 

For all of you who mentioned dry, scaly skin.  Castor oil, applied topically, is a great skin healer and softener. I've been using it for decades. G

[[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.

[[va...]]

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.

[[...]]

I went to the dentist yesterday and with the exception of a sore jaw everything's fine. I thought it might throw me into a wave but I actually feel better (clear headed) since the infection has been taken care of.

 

I've decided to start my taper by reducing .01 mg/2 days. This works out to apprx. 16%/month. If I get hit, I plan to hold and slow it down to 10%.

 

V. good to see you back and thanks for explaining to me how percentages work.

 

I'm using the liquid micro taper. I feel it's accurate and easy to do: I take 1 ml of liquid Diazepam add it to 99 ml of water (using a graduated cylinder) and mix it into a baby jar. On the first 2 days, I pour 99 ml of solution into the cylinder and drink it. The next 2 days I pour 98 ml and so on until I'm done.

 

I'm pretty apprehensive if not scared. I've held for 2 years and dealt with my health issues and I feel so good that part of me says "don't fix it if it's not broken". But I know I have to get this poison out of me or I'll never truly heal. And then I have to tackle all the other meds my idiot doc put me on so I still have a long ways to go.

[[va...]]

I went to the dentist yesterday and with the exception of a sore jaw everything's fine. I thought it might throw me into a wave but I actually feel better (clear headed) since the infection has been taken care of.

 

I've decided to start my taper by reducing .01 mg/2 days. This works out to apprx. 16%/month. If I get hit, I plan to hold and slow it down to 10%.

 

V. good to see you back and thanks for explaining to me how percentages work.

 

I'm using the liquid micro taper. I feel it's accurate and easy to do: I take 1 ml of liquid Diazepam add it to 99 ml of water (using a graduated cylinder) and mix it into a baby jar. On the first 2 days, I pour 99 ml of solution into the cylinder and drink it. The next 2 days I pour 98 ml and so on until I'm done.

 

I'm pretty apprehensive if not scared. I've held for 2 years and dealt with my health issues and I feel so good that part of me says "don't fix it if it's not broken". But I know I have to get this poison out of me or I'll never truly heal. And then I have to tackle all the other meds my idiot doc put me on so I still have a long ways to go.

 

Hey Jwl!!

 

I'm so glad the dentist went so well. And congrats on your bravery for wanting to taper again. You mention you'll cut 16% a month and if it proves to be too rough you'd lower it to 10% a month. Not that I want to tell anyone what to do and even less with benzos, but I need to say this. What about trying the other way? First 10% or even 5% a month, and if you feel the symptoms are tolerable, the next month you can attempt a faster tapering speed? Of course whatever you decide I will support you fullheartedly, but It's always recommended, after a long hold, to tread lightly with the first cuts.