[...] Posted January 20, 2016 Share Posted January 20, 2016 Sorry about your migraines Drew. This 'thing' just seems to hold on. Head and body pressure/tension are crippling me today, blurred vision....... the lot. I had this last Saturday and it was so debilitating. My stupid thoughts are going to MS again. Even my hands are tight and stiff and I have difficulty picking things up. I've had the day off as I've had some things to sort and it's been really tough. Last couple of day were a bit better even with no sleep. Anyone else feel like their brain is pulsating? Jen I have benzo belly when in a wave. Not painful just bloated. I've had some pain under my left rib cage today. Sofa, your encouragement is so beautiful, i hope you are ok We will all get there Link to comment Share on other sites More sharing options...
[so...] Posted January 20, 2016 Share Posted January 20, 2016 Marj, I've had the pulsating brain 24/7 since I jumped 14.5 months ago. I'm told it is cortisol chaos. I wish it would go. I wish you were having a better day, Marj. This is a very difficult trek. My drugged/drunk feeling has decreased and has become intermittent. This is a good sign of more healing. Until it comes back of course. Ha. I'm still dealing with cotton ears, but it has eased a bit too. I'm praying that my healing is picking up steam. When I get slammed, I forget about any improvements. Love, Sofa Link to comment Share on other sites More sharing options...
[sa...] Posted January 20, 2016 Share Posted January 20, 2016 Some good news. After 26 months my worst symptom, the crippling nausea and vomiting that has made my existence so terrible has gone away. Dec 22 was the last day that I had it. I still have other sxs like fear, zaps, head ringing, rage, confusion, but they are much more manageable. Mostly mental symptoms now. Things are finally getting better folks at 26 months. My good days are super now, about 85%, and my bad days are about 50-60% which is pretty good from where I was just a month ago. The funny this was I was just stressing about how nothing seemed to change for me in 2015. I thought I was going to be one of those still sick at 3-6 years. I had no warning that things would improve. Just bamm, nausea gone, just like that! I know I will heal now. Sooner than I was thinking. Hang in there you never know what day God will send you your healing, but it feels awesome when it comes. Link to comment Share on other sites More sharing options...
[dr...] Posted January 20, 2016 Share Posted January 20, 2016 Sasq-what great news!!! I'm so happy for you. Link to comment Share on other sites More sharing options...
[so...] Posted January 20, 2016 Share Posted January 20, 2016 Wow Sasquatch! Hope lives! Bless you for sharing this news! Love, Sofa Link to comment Share on other sites More sharing options...
[Mi...] Posted January 21, 2016 Share Posted January 21, 2016 Marj, brain pulsating yes! I have experienced that time to time. Sofa, drugged/drunk feeling letting up is excellent news! Drew, How is the beta blockers working out for you so far? Sasquach, Great News! Green Ice and Siggy, you both sound great! See ya all! This is our year! And Coop sounded good also, yay! :thumbsup: For me I got a case of benzo belly today! But not as bad as I have in the past! This month has been strange to say the least! My 24/7 anxiety seems to have lifted again a bit! It can still show its ugly self but it's all been on a much milder level! Fingers crossed. Even my throat Sx has lessened up a bit the past few days. And the breathing stuff has been a bit better! Fingers crossed! My agoraphobia has completely lifted now! And I actually drove out of my town solo yesterday! Even if it was only about 15 miles, I did it! Little bit of anxiety but no major panic. I went to one of my fav stores and actually enjoyed it! And this wknd we are traveling for hockey and I am actually looking forward to it. Well, kinda lol. But, I haven't packed a bag without major major anxiety in two years! So, it will be a huge step if all goes well...? Honestly if I didn't have the memory's I have from the past two years it would be MUCH easier.... But for now baby steps, one foot in one foot out has kinda been my motto this month..... And other then today my belly has been improving. I have had some acid reflux ect... A few days this month but the bloating and pain has been much better besides today! The GI stuff has been by far my worse physical Sx. My heart pounding has even let up a bit! Fingers crossed I think I am turning a corner. And I don't think it's just a window as I am by no means Sx free just Sx milder I guess you could say! I always thought there would just be a day where you wake up and everything is back to normal but idk if that's really the way this works??? I think IMO at least for me there is a re entry period where you re learn to trust yourself? Idk I could be wrong wouldn't be the first time lol... So proud of you all :smitten: And forever greatful for your friendships! THIS IS OUR YEAR GUYS! Link to comment Share on other sites More sharing options...
[Te...] Posted January 21, 2016 Share Posted January 21, 2016 Hello y'all......I want some of your coloring books , Jen.....sounds like a good distraction Sorry ....Drew about your migraines.....grrrrr I'm having a lot of crazy anxiety......with...bug stings....or something....mouth is super numb again....went over a week ago to holistic dentist....he swears I have some type of bug in extracted area...gave me these herbal drops....think I reacted to them....so I stopped.....my regular dentist is looking for someone of could do a DNA dental biopsy on me....if my mouth issues are all withdrawal...I pray it's not permimant.....how can teeth feel like dinosaur teeth...and feel like they move...when its been extracted....and what burns my gums and mouth and effects inflammation markers....badly.....heck ...what was in clonazepam ? Sorry....I'm mad......I need a window......I'm wishing you all a good night sleep... Please forgive me talking about my teeth all the time...but thanks for listening... Hugs! TM Link to comment Share on other sites More sharing options...
[Mi...] Posted January 21, 2016 Share Posted January 21, 2016 Texas, Don't ever think u have to apologize to us! We all have our major physical Sx. Migraines for Drew. Sleep for Siggy. Teeth, gum pain for you. Mine has been my stomach and chest area. The sharp pains, belching, bloating. It's not fun, it's pure torture some days. It's weird how we have so many similar Sx but yet our major Sx seems so personalized. But please don't apologize we are all here for you when you need to vent and will be here to celebrate when it's all over! I have had some jaw pain here and there but nothing like what you are describing. But that doesn't mean it's not withdrawl! I have only had a few bad headaches and Drew has major migraines. I usually sleep very well at night and Marj and Siggy barely sleep some nights. It sounds like Sasquatch vomited daily, where I only feel nausea mostly. I honestly look pregnant on my bad days. Truly I wear a size 10/12. And on my bad days I can barely get a elastic pair of men's XL sweats on. I ran into a old friend a while back and they congratulated me on my pregnancy. I AM NOT PREGNANT LOL, but I just said thanks we are excited, lol! I belch and burp like I am a 500 lb man who only eats MCDs and drinks soda 24/7. Some nights I am petrified to sleep because I feel as if I am going to choke to death on the acid coming up my throat. And the stabbing pains in the belly and chest squeezes are horrendous. I have seen specialists ect.. So far all my tests have come back normal to perfect. I figure if they didn't see anything alarming at all on the ultra sound why do the endoscopy. I am doing the barium swallow though just for more peace of mind. But anyways sorry For getting long winded. I am just trying to help you out. Show you all the different things these drugs can do...... I know these physical Sx are scary but I truly believe that's all they are physical Sx our healing in progress. Try to breathe as I know all to well how anxiety can spike and the health fears can defeat us! :'( :smitten: Link to comment Share on other sites More sharing options...
[dr...] Posted January 21, 2016 Share Posted January 21, 2016 Vent away....lord knows I do. Great update Jen! Very exciting. I'm okay. No problems w beta blockers today. Bad headache from 1:45am until noon. Worked from home. Head it'd still w scalp pain. I'm hoping to sleep the night through but we'll see. I found a new guided imagery meditation which relaxed for the first time in over a week. Guess this is my wave which is mostly head related. I need a ak from this. Haven't had a decent day in nine days. Link to comment Share on other sites More sharing options...
[pi...] Posted January 21, 2016 Share Posted January 21, 2016 hi everybody, Well as i enter the 18 month mark i guess it's my new place here in the "midl proctated" area, i thought at this stage i would be at least functionnal, able to go outside like a normal person, able to exercize like a 27 years old personn do, able to have a job like a 27 years old personn. No one of this is actualy happening like that, here are the symptoms i still fight 24 / 7 at 18 month and 10 days Psychological : - Severe anxiety, agoraphobia, panic attack - severe black deep depression till i open my eyes in the morning when i wake up, very hard to get up of bed and ruminating on my bad condition - Cant look at action/horror/violent film because it's freaking me out - social phobia, outside and even Inside when some person come visit at home - heathl anxiety - SEVERE DP DR, live in a constant unknown word, dont recognize my home, my bedroom, my road, my town, my friends, my parents - claustrophobia, monophobia outside im scared to leave the house alone while i spent my youth doing party with friends, going to music festival, having my job etc etc, so ridiculous... - going to the grocery is still a challenge, crazy Dp dr because of the vast environnement and all the stimulation, panic attack at the cashier, feel trap etc even with exposure it dont pass, it's like the fear reset itself one hour after doing it or the next day. The last 3 days i forced myself to go to the grocery and im already fearfull to go again to it, it's not mild anxiety i mean im terrified to go... Physical - SEVERLY weak legs, knees, scared to walk to much because it's like my legs can break at any moment and have fracture - severe insomnia, 3-4 hours broken sleep a night , dont sleep more than 6 hours straight for 2 years now dont know how i could be alive - soft stool everyday or anormal stool - exercize intolerance, even a 15min walk i end exausthed or with crazy mental symptoms raving up - SEVERE cognitiv problem, everytime i have to think or concentrate to resolv a problem or doing simple task i have very weird sensation in the head, like i litteraly stop breating and begin to be Dizzy - numb arm, legs, mouth, face - back pain, neck, shoulder, feet pain I guess i forgot some other, i cant believe that i'm dealing with so much symptoms this far out, realy it's like im still in accute 18 month after, non functional, cant work, cant socialize, cant exercize, 27 years and wasting my youth in this process in the age i should build my life... I could deal with the physical symptoms, the worse for me is the mental as im to far away from my old self and it's driving me insane to live in a mind that it's not mind, i cant be positiv because im not myself anymore Link to comment Share on other sites More sharing options...
[Sk...] Posted January 21, 2016 Share Posted January 21, 2016 Some good news. After 26 months my worst symptom, the crippling nausea and vomiting that has made my existence so terrible has gone away. Dec 22 was the last day that I had it. I still have other sxs like fear, zaps, head ringing, rage, confusion, but they are much more manageable. Mostly mental symptoms now. Things are finally getting better folks at 26 months. My good days are super now, about 85%, and my bad days are about 50-60% which is pretty good from where I was just a month ago. The funny this was I was just stressing about how nothing seemed to change for me in 2015. I thought I was going to be one of those still sick at 3-6 years. I had no warning that things would improve. Just bamm, nausea gone, just like that! I know I will heal now. Sooner than I was thinking. Hang in there you never know what day God will send you your healing, but it feels awesome when it comes. Sas, this is GREAT news ! Gives me so much hope as well. Link to comment Share on other sites More sharing options...
[Sk...] Posted January 21, 2016 Share Posted January 21, 2016 Hello y'all......I want some of your coloring books , Jen.....sounds like a good distraction Sorry ....Drew about your migraines.....grrrrr I'm having a lot of crazy anxiety......with...bug stings....or something....mouth is super numb again....went over a week ago to holistic dentist....he swears I have some type of bug in extracted area...gave me these herbal drops....think I reacted to them....so I stopped.....my regular dentist is looking for someone of could do a DNA dental biopsy on me....if my mouth issues are all withdrawal...I pray it's not permimant.....how can teeth feel like dinosaur teeth...and feel like they move...when its been extracted....and what burns my gums and mouth and effects inflammation markers....badly.....heck ...what was in clonazepam ? Sorry....I'm mad......I need a window......I'm wishing you all a good night sleep... Please forgive me talking about my teeth all the time...but thanks for listening... Hugs! TM TExas Mama, you were hit at your teeth, that's where your wd focuses on. No need to apologize, this is what this thread is for. Link to comment Share on other sites More sharing options...
[...] Posted January 21, 2016 Share Posted January 21, 2016 Some good news. After 26 months my worst symptom, the crippling nausea and vomiting that has made my existence so terrible has gone away. Dec 22 was the last day that I had it. I still have other sxs like fear, zaps, head ringing, rage, confusion, but they are much more manageable. Mostly mental symptoms now. Things are finally getting better folks at 26 months. My good days are super now, about 85%, and my bad days are about 50-60% which is pretty good from where I was just a month ago. The funny this was I was just stressing about how nothing seemed to change for me in 2015. I thought I was going to be one of those still sick at 3-6 years. I had no warning that things would improve. Just bamm, nausea gone, just like that! I know I will heal now. Sooner than I was thinking. Hang in there you never know what day God will send you your healing, but it feels awesome when it comes. Sas, this is GREAT news ! Gives me so much hope as well. Yes Sas, thanks for coming and giving us your positive news. So pleased you are seeing improvements, it gives us hope. Great to hear from you Sky, how you doing? Much better I hope. We are near the end, even though it is still sooooo hard. I got a break Sunday, mon & tue were easier and then got slammed yesterday and today. Just breathing through the horribleness, hoping for a better day tomorrow Link to comment Share on other sites More sharing options...
[Wo...] Posted January 21, 2016 Share Posted January 21, 2016 Pil54, I'm really sorry you're suffering so bad right now. You'll find a lot of us here still dealing with a lot of the same issues. Nothing we can say but hang in there. Many folks are seeing a major reduction in sx around this time, even more so at the 2 year mark. You never know when your time will come, but it will. The outcome is recovery. Take care. Link to comment Share on other sites More sharing options...
[Mi...] Posted January 21, 2016 Share Posted January 21, 2016 UGH...... :'( Ofcourse sense I wrote last night my chemical anxiety has been so much better and no major panic attacks this month and I wake up with chemical anxiety, heart pounding, white knuckle panic! Oh how I hoped this part was over!!!! Link to comment Share on other sites More sharing options...
[dr...] Posted January 21, 2016 Share Posted January 21, 2016 Jen, once it dropped off dramatically off for me and now when it comes back it is for much shorter time periods. Hope that's the case for you Link to comment Share on other sites More sharing options...
[Te...] Posted January 21, 2016 Share Posted January 21, 2016 Jenn.....do you ever get throat dryness...my throat has been dry...and throat spasms....I hate this dry feeling when it happens on top of throat pressure....Feels like someone is squeezing throat muscles...at the same time throat is so dry...feel like gaging.... Can I ask.....who has completely removed all sugar from diet ...does dt soda....convert to sugar? Jenn.....your diet...is good.....it's all withdrawal....I keep pushing off....having my stomach scoped....fears I'll not make it....at this state.....fear of going under....just taking my daughter to acute care the other night.....made me realize ....bugs crawling on skin....and numb lips and mouth...how messed up my system is....there is no words to describe the nervous system is in such overdrive...no doctor...can fix this mess.....which to me is very dark and scary... thanks again....everyone for listening ....it helps me to get through each day....just knowing that there is others that feels like this....is a comfort....even though I dont wish this on know one..... I still have days where I think clonazepam should be over....and it's something else....but when I listen to others and their symptoms sound so familiar...it makes me rethink I get mad a lot on why I took the pills....I've always had major problems with meds....clonazepam ...seemed like a wonderful thing to no sleep from hysterectomy....but I was way better with no sleep then this way I'm feeling...no words can describe the terrible way I feel everyday...it's heartbreaking.... TM Link to comment Share on other sites More sharing options...
[Mi...] Posted January 22, 2016 Share Posted January 22, 2016 Thanks Drew, I am much calmer already tonight. I just feel so defeated after a attack. Especially after they have been so mild lately. Oh well, tomorrow is another day. And as we all know to well, tomorrow can be ANYTHING. Kind of like spinning the wheel of fortune, ha! Gotta laugh or cry I guess, sorry for the bad humor..... Texas, yes dry throat, throat tightening, throat closing sensation, ball lodged in throat feeling, ect.... The throat stuff is absolutely wretched stuff. It's funny you mention bringing your daughter to the clinic. I was just there this morning with my daughter. I think that's what set my Sx into overdrive today. She has been sick all week. And who knows maybe I was destined to have my anxiety anyways today...? But the clinic is a real trigger for me. My heart was pounding... I try to stay away from sugar, I am not 100% sugar free but really watch it, and don't consume much at all. I can't do gluten at all. But this was pre existing to withdrawl. My daughter is celiac as well. I don't drink soda of any kind as it really revs up my reflux. And I gave up my POT of coffee BUT, I STILL DRINK ONE CUP EVERY MORNING. WITH MY SUGARED FILLED CREAMER. But that's it then. It's a wonderful treat. I couldn't do this in the first 12 months. Idk when I introduced it back it did rev me up but it also helped a lot with the cog fog. Flip the coin who knows.... This is all so tricky and when we wave we look for something to blame it on. I almost had a half a glass of wine last night but then decided not to as we are traveling this wknd for hockey and didn't want to chance it. But, if I would have I would be totally convinced it was the cause of my rather large attack today. Just as now my brain/mind is convinced it was the clinic today, that caused it. ? But yesterday I drove out of town solo. That was huge for me and I didn't have the big one then? Who knows? Don't get me wrong a healthy diet and adaquate sleep, some exercise and/or yoga, meditation. I truly believe in all that stuff expecially when our bodies are healing and have been through so much emotional, mental, and physical trauma. But, I am starting to realize a lot of times a wave is just a wave. That will or will not happen 90% of the time. I am working really hard to not label them directly with something right now. Because, IMO and for me personally it's caused a lot of fear in my life. Fear of everything! Where as before if I would have ate an apple and then had a panic attack or any other horrible Sx my brain would have labeled the apple as bad. And when you are scared to eat a apple, like I was something has to be done! Lol....... Night All. Link to comment Share on other sites More sharing options...
[Co...] Posted January 22, 2016 Share Posted January 22, 2016 Miss Jen... I was just checking in on the thread for a minute and I caught your posts regarding gi issues....I have been battling with the exact same scenario. .Mine cropped up this summer in months 17, 18, 19....I had all the tests as well, and like you I declined the scope. Mine got better for awhile and then came back around Thanksgiving time.... When did yours start?... Did your gastrointerologist suggest or test for gallbladder sx? ... It is a relief to know that I am not the only one with gi issues well into the second year.. I am in the last leg of month 26....You sound really good though otherwise. ......thanks.....coop Link to comment Share on other sites More sharing options...
[so...] Posted January 22, 2016 Share Posted January 22, 2016 Jenn, I get this every morning at 4am. 14.5 months no change. It settles down throughout the day. If it went away for you once, it will again. Love, Sofa Link to comment Share on other sites More sharing options...
[Mi...] Posted January 22, 2016 Share Posted January 22, 2016 Coop, I am so happy for you! You have come so far. I so hope to be doing as well as you in month 26! I had my gallbladder removed back in 06! And found out I was highly sensitive to wheat. So, I am not new to GI stuff. I had tummy troubles for as long as I can remember.... But with that said my before withdrawl tummy problems don't even compare to the after withdrawl tummy Sx. What I experienced before was a walk in the park full of sunshine, rainbows, and puppy's. Although I believe that this process can really strike any weak spot the body already had! My naturopath believes I have a hiatal hernia that slides a bit on me. It's his guess, it hasn't been proven by medical imaging yet. But when it gets real bad and I see him and he sets it after a day or two it's a whole lot better. So who knows? I don't think that's the main problem as sometimes I get the bloating, pains, belching, reflux and my hernia area doesn't hurt. Who really knows? Coop, did you ever do a barium swallow study? I am nervous, not of the test ofcourse but to drink the liquid. Our body's seem to react so strongly to things?.. But, I know it would give me some much needed peace of mind! This stuff is so way beyond crazy... I Guess the only thing that helps me during the flare ups and then health fears is the fact it comes and goes. I would think if it was something really serious it wouldn't come and go?.. But this GI stuff has been by far my biggest physical complaint! The throat stuff and heart pounding isn't fun either but if I can really relax it seems to let up. There isn't enough relaxation in the world to help this tummy stuff... I started on a probiotic from my naturopath. I think it's been helping but then again who knows it may all be in my head.... :smitten: Link to comment Share on other sites More sharing options...
[Mi...] Posted January 22, 2016 Share Posted January 22, 2016 Sofa, thanks! So far so good today! I am packing for our hockey trip.... I keep telling myself I can do this! And I don't know if I should be laughing at myself or crying. I just can not still wrap my mind around these past two years. If someone would have told me 5 years ago that today I would be worried about leaving my house for a wknd trip. I would have died of laughter!.... I loved traveling.. Staying home would have bored me to death... This is all so crazy... I am a very spiritual person. And truly believe when it's your time it's your time. So, non of these feelings make any logic sense to me. I hate not being near a hospital ect... And the worst thing is I don't even trust the medical community in general. My reactions make no sense! I feel as if I have lost all my marbles..... I don't worry about not healing anymore... I truly know we all will heal.... I worry that the trauma we have all experienced is etched so deeply within us that we are permanately changed by it! And, that scares me to death... I so hope that with further healing this stuff fades a bit... Sometimes I feel like I can hear the old me, connect with her. And the old me is pissed! Screaming and shouting at the traumatized me! I am sure that makes me sound like a whack job that has lost her marbles. But, I don't care. I just want that old voice to take over and kick this traumatized voices butt! Link to comment Share on other sites More sharing options...
[Fi...] Posted January 22, 2016 Share Posted January 22, 2016 Well, Jen, you WILL be permanently changed by this...but for the better. I would suggest you change the story you're telling yourself to one of kindness to the poor Jen who is having to go through this. She doesn't need her butt kicked! She's doing the best she can. Please gently encourage her and I think she'll respond better to that! People are probably getting sick of me mentioning this book, You Are the Placebo, but it seems perfect for somebody right at your stage, where you're moving back and forth between being a sick person and a well person. Start telling yourself a more encouraging story! Link to comment Share on other sites More sharing options...
[Si...] Posted January 22, 2016 Share Posted January 22, 2016 Just stopping in to say hi. Still feeling relatively well other than a little disrupted sleep still. Some tinnitus in the morning. Woke up with the blood pounding temples, which I haven't had in a while. Not much to sweat in the grand scheme of w/d. I've had much worse days. Going to make chile tonight and see is this snow/ice apocalypse part deux happens here in Atlanta again. Link to comment Share on other sites More sharing options...
[Si...] Posted January 22, 2016 Share Posted January 22, 2016 Drew your head any better today? Link to comment Share on other sites More sharing options...
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