12-18 month support

[[dr...]]

Proud of you green!

 

 

My symptom of the neural storms hitting me throughout the day seem to be lessening in intensity.  My evening one is here right now but I'm just uncomfortable with mild anxiety and internal weirdness. No major fear.  Just waiting for the storm to blow through.  Whew.  Hope it continues to lessen.

[[mr...]]

Heyo gang; just checking in

 

Nova - I'm in awe of all the snow you've gotten! Do y'all commute places in dogsleds by now?!? Today is the first official day of spring. I have put in a memo to the Mother Nature of Nova Scotia. Here's hoping for you!

 

Coop - great success story mention I really relate to Megan's story. If fear/panic/anxiety/health fears were a symptom for you, Pianogirl's, Magrita's, and Sophia's success stories and posting history are great reads. Also the posting history of Stillbelieving and Northofhere - wow! Matthewonline dealt with heart stuff as well as fear/anxiety/panic, and his posting history is so relateable, especially his 1-2 years off timeframe. I need to re-dig in again and do a better job if reminding myself that life will return to GREAT again! We are getting there.

 

Green and Sky - what can I say? Frowny face to how you've been feeling, but I hope it lifts soon for you. Green, was it you who does biking? Or was it Sky? Either way, maybe tomorrow will open up some time and weather for a little ride

 

Drew - I'm curious if the migraine supplement has any affect on your fatigue also. Keep us posted on how it goes!

 

I am getting sleepy already, which I'll take We are at a (CRAY-ZAY) hockey game right now (for Mr's enjoyment - he deserves it ), but it'll be done in 3 minutes...(between y'all & me: ). Have a great night & rest well

 

Mrs.

[[mr...]]

Whoa! One more post tonight...

 

If fear(s) were/are a withdrawal symptom of yours, check this post out from Dr. Jenn: http://benzowithdrawalhelp.com/2015/03/11/why-are-my-old-fears-so-big-now/

 

Mrs

[[Gr...]]

Green ... this snow is coming from your south ... on its way to us tomorrow ...

 

This 16 - 17 -18 month stuff sure is giving us a rollicking time ... 

 

I get to start 18 months out on Monday ... hope it has a different flavour from month 17 ...

 

Have a good weekend ... hope this settles out for you ...

 

Nova,

 

18 months, that's a milestone.  Yes, I sure do hope it's a different flavor.  This has to start getting better.

 

I didn't know the snow came from here.  It's very heavy, very wet.  Of course, it's not that cold here, so it should be gone by tomorrow. One warm day, and yours will be gone, too.

Hope you get some sleep tonight.

[[Gr...]]

Hi everybody, I am off to bed, shortly. I don't have anything new to say, the same broken record, feel bad, I am going to bed, thankfully I am able to sleep, it's the one things that is so much better  than before my ct.

 

Heart is pounding, vibrations, la-di-da. YOu never get used to any of this, you adapt but you don't get used to it.

 

Mr Sky, prepared some lovely sweets, they smell so good and of course they are off limits. He made some bread with chocolate cream, a pie and some marmelade. Wd, has made him in such a good cook ! At least someone is getting something good out of wd !

 

Green, I read your log, sorry to hear you are in such misery.

 

GOod night everybody,

 

Sky

 

Thank you, Sky, it will pass soon, I hope.  settle down to Coop's 7-80%, which I will take gladly.  I'm so bad with math, can never figure it out, lol!

 

Can't believe you're not eating Mr. Sky's desserts.   They sound DELICIOUS!

[[dr...]]

Good post on fear mrs

[[Gr...]]

Hey 12-18 month buddies,...if you need some encouragement this weekend read Megan's ( administrator) success story. She is a bit older like me and Nova and she writes in her story of still having many sx well into the second year and starting to get better between months 18/20.....aaaannnd ...healed...really healed at 24 months. She got ALL of her life back.  I am hanging on that story this weekend.  ..Wishing everyone a better weekend. ...coop

 

Yes, Coop, that's when her cog fog lifted, 18/20, which I'm guessing is the DR.  have a good weekend yourself.

[[Gr...]]

 

Hello from Boston!

A quick check-in before I crash. I just finished up Day 2 and things are going great! I did not panic on the flights, even when landing in Boston was very bumpy because of the high winds. I had an absolutely packed day today, on the go from 8:00 this morning until 9:30 tonight, and I have had no symptoms bothering me.

 

I'm literally falling asleep as I type so I'm going to post this and get some zzzzzz. So far, so good, and I'm beyond thrilled that I decided to come!! 

 

Love to you all,

HH

 

:yippee: :clap: :clap:

 

GreenIce,

I'm so happy for you. Keep posting because you give me hope. You're at 20 & I'm at 16 so not far to go. Have fun, you earned it.

 

No, Korbe, that's actually HealingHope going to Boston.  I messed up the blue quote thingie, lol.  I'm in a wave, lol, not planning on going to far. But I'm optimistic.  And things do get better.  I need to remember after a bad wave, there is great healing.  You should remember that, too.

[[No...]]

How are you doing Drew? ... neural storms ... a good image ...

 

I just had a solid four hours of sleep ... batteries feel re-charged ... everything seems to have moved to the back burner for me right now ... hope it stays there for a while ...

[[dr...]]

I'm okay Nova.  Things seem to be winding down in intensity.  I'm hopeful. I really hope both us get continued relief.  I hope all of us do. Off to bed and would love to get four solid hours.

[[No...]]

Well, Good Morning ... had a good four hour sleep ... felt chipper and bouncy ... updated my success story to reflect 18 months ... had another three hour sleep ... and feel like something the cat buried and is sitting on top of and yowling ...

 

Whoever keeps changing that dime outa be flogged ...

 

Oh well ... only getting a little snow and then a big rain ... that should be fun ... glad I live on top of the hill and everything flows down hill to the harbour ...

 

Have a good Saturday ...

 

Today's musical theme is "Row, Row, Row Your Boat" - even though it is stuck on top of a snow bank ... 

[[Co...]]

HI Nova..."chipper and bouncy"...so happy to hear that some of your infamous bounce came back ...although it stinks that it was short lived... crappy w/

......Yep, row row row...We have rowed across the ocean...and back by now. We will wash up on the shore ...and walk away from this with our lives back.

.......We all sound like we are starting to roll out of this one .. except Green is in the rip tides.. Hold tight Green, we are rolling right into month 17..  another month done. Nova...month 18 .. the home stretch.. Amazing how far we traveled one day at a time. 

.....My wave lifted quite a lot yesterday, but this morning it feels like could go either way.  a crap shoot at the moment. Just having my half caf coffee and getting ready to take the dog...in the rain...My daughter is coming over later for coffee ,a movie and to dig through storage to sort through the patio stuff....hoping to get over to the complex work out room and do a little rowing ( gotta get across this ocean again) and some barely weighted weights..

......Wishing everyone easy rowing today on calm waters.  coop

[[Ko...]]

Up all night, so researching about Benzo W/d. Have any of you heard of anyone going to the Coleman Institute for benzo detox? They now do a quick detox while infusing Flumazil which is supposed to reset the Gabba receptors. I'm just wondering if it works for those of us this far out.  And does it last?

I'm going to call them.  They only do it in their Virginia and Washington Centers. They gave 10 centers for other detox. I know Flumazil works but I heard it doesn't last. The other drawback is it has to be given intravenously.

[[Sk...]]

Hello everybody, I just rolled out of a wave. It was mid day, I was in a wave and I was on my way to Ikea. Even in very good days, for me, Ikea has always been the 5th circle of hell. Bu today, my wave lifted and it was quite enjoyable, I felt almost normal. 

 

Now, my eyesight is dimming a little, but I still feel ok.

 

I am going to have dinner soon. Hope everybody is better here.  I found out yesterday, that I have f ull use of my arms back and that means so much to me. Last year, I could never have gone swimming, my arms could not move fully and were in great pain, so I am a happy bunny. 

 

Korbe,  hope somebody answers you.

 

Mrs, Green and I are both bikers !  So, it's normal to be a little confused !

 

Have a nice, or better, weekend.

[[Gr...]]

HI Nova..."chipper and bouncy"...so happy to hear that some of your infamous bounce came back ...although it stinks that it was short lived... crappy w/

......Yep, row row row...We have rowed across the ocean...and back by now. We will wash up on the shore ...and walk away from this with our lives back.

.......We all sound like we are starting to roll out of this one .. except Green is in the rip tides.. Hold tight Green, we are rolling right into month 17..  another month done. Nova...month 18 .. the home stretch.. Amazing how far we traveled one day at a time. 

.....My wave lifted quite a lot yesterday, but this morning it feels like could go either way.  a crap shoot at the moment. Just having my half caf coffee and getting ready to take the dog...in the rain...My daughter is coming over later for coffee ,a movie and to dig through storage to sort through the patio stuff....hoping to get over to the complex work out room and do a little rowing ( gotta get across this ocean again) and some barely weighted weights..

......Wishing everyone easy rowing today on calm waters.  coop

 

Coop, so glad to hear you're rolling out of this wave, along with Nova.  And Sky is having a better day, too.  This day is hard to tell. still tired.  but I found the mental resources to cope.  now does that mean the symptoms are lighter?  I'm getting better at handling waves?  We can never know.  I just know I'm not freaking out.  I think it's got something to do with some mental stuff lifting.  hopefully it continues in that direction.

 

Korbe, aren't you too far out for the Flum. treatment? I remember reading about that when I first jumped.  The Coleman Institute has a decent benzo page, I learned a lot from them.  Remember, ultimately these places want your money.  So get all of the information you can before you act.

 

Sky, Nova, so glad to hear you're both doing better.

 

Well, wave or no wave, I'm going to see the Rockettes at Radio City tonight.  There's a lot I can't do, and some things I refuse to part with.  no walk, no bike ride today.  I seem to have more energy later in the day.  so let's hope I can remember the damned thing.  and also bring binoculars.  radio city is massive and I have a cheap seat, lol

 

sun came out, Nova, and snow is melting.  Hope that's happening in N.S.

 

Have a good evening, everyone.

[[Ko...]]

GREENICE,

I thought so too, but was reading some research that they have been trying Flumazil on protracted people and it's working.  I just couldn't tell if lasted.  I think it worked well, but then patients needed follow up infusions because Sx came back, but for some it cured them. Not sure if the Coleman ins used the same method. I think they di 5 to 7 days of infusions.

 

It sound expensive & one must go to Seattle or Virginia. I'll keep investigating.

 

I'm still struggling with body pain around benzo belly and extreme boaty ness. Haven't had a break or window in 6 weeks, except a little less pain.

 

Hope everyone has a good day.

[[Mi...]]

 

Hello from Boston!

A quick check-in before I crash. I just finished up Day 2 and things are going great! I did not panic on the flights, even when landing in Boston was very bumpy because of the high winds. I had an absolutely packed day today, on the go from 8:00 this morning until 9:30 tonight, and I have had no symptoms bothering me.

 

I'm literally falling asleep as I type so I'm going to post this and get some zzzzzz. So far, so good, and I'm beyond thrilled that I decided to come!! 

 

Love to you all,

HH

 

:yippee: :clap: :clap:

 

GreenIce,

I'm so happy for you. Keep posting because you give me hope. You're at 20 & I'm at 16 so not far to go. Have fun, you earned it.

 

YES!!!  Love reading this stuff!!!!!!!!!

[[dr...]]

Korbe-flumazil only works for short periods of time. Several people went to the institute you mention. I believe he used it to get them off benzos and then all hell broke lose when they got home. Similar to a cold turkey.  Post on the general board or alternative therapies and I'm sure someone will know more.  Sorry, if there was an easier way someone woukd know it here and it'd spread like wildfire.

 

 

Well...something revved me and it was either the jogging for 1 1/2 miles(which I haven't had my hr that high for a month) or its rebound stuff from my two days of taking a beta blocker I stopped Friday.  All I know is I just finished a 2hour fear/cortisol rush type thingy.  Yuck!  Not really thinking into it too much.  I tried my damnedest to just be a passenger to the whole experience.  Let it flow through me and acknowledge how I felt but I kept saying "it's part of the healing...no way out but through". 

Be the canoe!

[[Co...]]

So sorry Drew,.. I don't want to disparage your beta blocker, many people use them without any side effects and many people depend on them for treating hypertension...having said that....I had similar side effects on propanol...lesser on atenolol. My physician described beta blockers to me . The way propanolol and atenolol work is they block cortisol . In between doses or if you are  using them as needed when they leave the system the blocked cortisol is released in a gush....this can cause cortisol rushes and anxiety . This is why people who take it for hypertension long term have to be weaned off gently. However they are not like benzos and weaning off is nothing like benzo w/d. There are several types of meds that treat hypertension so sometimes you have to try a few before you get one that you can tolerate.

......Are you taking only for migraine prevention ( no small thing for sure). .....I hope it settles soon. When I took my atenolol as needed ( for random b/p spikes...it only treated them it did not prevent them) if I took them for 3 days in a row and then titrated down for 2 days I felt like I had either w/d sx from the propanolol or an uptick in benzo w/d sx...I couldnt tease out the difference. ...It took a day or so for me to get rid of the shakes and anxiety. ...I will be so happy for you when your Preventa supplements start helping.  How is the migraine beast?.. I just heard on one of the threads ( can't remember which one) that magnesium can be purchased in a lotion form. I am looking for it in the  natural remedy stores here. It sounds intersting...Feel better Drew.  Things will settle. ...thinking of you buddy....coop

 

 

 

[[Co...]]

Korbe, if I am reading your signature right you are in the same month of w/d as I am...month 16.5? ...I jumped Dec 3 2013. If that is correct , many researchers including Ashton ( revised ) do not consider protracted until month 24 has passed. ..I also have had mostly waves and long periods of what feels like to me continued acute. I have had some windows and sunbreaks but mostly wave and slowly improving baseline. The longest window I had was a 5 day stretch at the beginning of month 16...followed by the wave I am trying to roll out of now.

  . ..I agree with Drew, if there was something that made this easier the news of it would spread like wild fire and we would all be standing in line to sign up. You will find a ton of information on the alternative medication board and the ' other medications'  board. ...Man, I am right there with you...I would give anything for relief from this wild ride..I have tried several otc meds, supplements, homeopathics, vitamins etc. For me, none of them really helped...some of them made things worse. I would weigh it out carefully...you have come a very long way to risk it..  I hope things ease up at least a little.. you are in good company here.  we have all been keeping on keeping on for at least 12 months..many of us well into the second year... we are getting there even though it doesn't feel like it. ....coop

[[Co...]]

Sky, I am doing the biggest happy dance for you!.. You so deserve this break.  " Feeling almost normal"  the best news along with Nova's hours of returned bounce. You both have given me encouragement today. Sky.  Enjoy your day...to the hilt..  coop

[[dr...]]

Hi coop-I took a 10 mg dose on wed night and 20mg on Thursday. I had much less cortisol on Friday. If you remember I wrote the intensity of my neural storm were lessening.  Maybe it was the proprinonolol still in my system.  Well it's pribbably home now and that's it.  My gf commented on how shaky my hands were this am. I felt different jumpy too. Like I had to exercise.  This the jogging. Lol.  One hour later the floodgates opened.  I usually get a break after 40 minutes  but it was still revving during a massage an hour later.  Feeling okay now. Just major brain fog but no panic. Do you think the response to no beta can be delayed a day or so?  Regardless, I hope it's just a day or so.  cant anything be easy ?  lol. 

 

Btw-I just took the 30mg over two days and said fuck that.  I didn't feel right.  I'm doing well on the preventa migraine so far.  No migraine (only two days though) and I did notice my muscles aren't as sore. Could have been the beta though.

[[Co...]]

Green, ...boy are we in the same place...living with sx...I was back in a wave this morning...I kind of knew it was coming...freaky thick scary 'can't think ' d/r...that stuff just terrifies,me when it is that deep. A moderate level of it I can ignore pretty much. Anyway it lasted for the first part of the day and then gradually lifted to tolerable. Like you I just refuse to give up some things like coffee with my daughter and seeing a movie with her. I couldn't begin to really tell you what was in the movie ( Mama Mia is coming to our city later this summer and she loves it and will go when it's here, so she brought the movie over to watch in the theater facility here).  A total blur in my mind and I literally can not remember taking the dog out this morning, though on a cognitive level I know I did.  This feels like total dementia to me.. then it lifts.  As Sky says, " Gawww"....

....Green, I hope you enjoyed the Rockettes ...nose bleed seats and all.  ....coop

[[Co...]]

Drew, Just a guess, but I would think you could get a delay depending on the dose. I know propanolol is shorter acting than atenolol but I don't know how long it stays in the system I had to take my atenolol in a split dose to keep the dose steady. ..What you describe sounds a lot like my response to propanolol ( and to atenolol after 3 day treatment)  shakiness. .wanting to move and stay busy.. jittery and  hemical anxiety. . I am glad it is easing up...and I am really glad that your migraine did not come back. ..coop

[[Co...]]

Nova, ...hope everything is still simmering on the back burner..hope it all just simmers away for all of us....Do you have big puddles of dead snow now...carry on.....coop