12-24 months and up support group

[[Be...]]

I have to lie down all the time because of my bad head pressure.  If I sit up I'll possibly fall over and go unconscious. 

[[Pa...]]

Thank you Lisa and LadyDen.  Much strength to everyone. Good job on the driving, Bess. I've been terrified to get behind the wheel.

[[La...]]

LiveLife:

 

My husband is coming back this evening.  It will be nice to have his company, but he does get a little frustrated with this situation.  I try not to say too much. 

 

I was rereading some old posts about long waves and it looks like you have been in this wave since the beginning of June?  Is that right?  Has it been horrible the whole time?  My waves sort of build; I can feel them coming on for a couple of weeks and then they just get unbearable for a few weeks.

 

This is just too much!    No words!

My waves do this too…build up over a couple of days. I didn’t use to tell they were coming but now I can. They stay longer now. Days up to a week at a time. They used to be an hour or two. Definitely has shifted. I’m going to claim that it’s for the better baseline. Fingers crossed 🤞

[[La...]]

I lie down on the sofa all night and watch TV lying down too.  I'm even lying down on the sofa right now typing on my Chromebook on my lap.

After being bedridden for over two years I was so happy to be out of bed most of the day. The past month I’m back in bed most of the day due to getting slammed. It sucks!

[[Fo...]]

The further I've come,  the worse I've gotten in ways,  I notice when I wake up,  I am so heavy and I dont want to wake up,  it's pure exhaustion. I have no interest in looking nice, my nervous system can't handle much of anything at all. Any stimuli early can make me have tachycardia for hours, I have reached the point where I can't take it anymore, thinking I'm dying every single day, I feel like I have had a stroke and am now is this half way state where I am not even functioning well enough to have one good thought. I just dont know if it's the drugs or something else, I need help rationalizing.  I feel like I have damage and it feels worse now than the first 6 months in some ways. I feel like jekyll and Hyde, and I've had many people tell me I sound like I have thyroiditis,  but I dont know what to do about anything anymore. I've been to the doctor over and over again.

[[Fo...]]

Why would my brain still be constantly reminding me  I won't be here, why. It's always there reminding me I'm going to be gone.

[[La...]]

So much suffering on this thread.  Hugs to you all.  I am interested in how you guys cope all day with your symptoms.  My biggest symptom by far is the anxiety and shortness of breath.  It is really, really bad when I eat from the hours of 6am to about 3pm.  So to cope I just dont eat as long as I can tolerate it.  Sometimes I get hungry tho and then it makes for a really bad day.  After 5pm I seem to tolerate foods without too much anxiety.  At night it goes down a lot and I can sleep fairly well.  Also meditation seems to work on the anxiety but just for an hour after.

 

What are you symptoms during the day and night?  Do you get any relief?  Any triggers?  Do you get waves/windows or is it constant?  What are your biggest symptoms? 

 

Hugs to all of you.  This is such a beautiful group of people on this thread.  Thank you LadyDen for starting it.

 

Wow JBen I know you’ll be glad to not have those eating issues. You’ve been dealing with that for awhile. I’m sorry, my friend. 

To answer your questions…

My symptoms- boatiness ( varying degrees), ataxia ( sudden muscle weakness), unbalanced, magnet pulling sensation coupled with loose stools, tinnitus ( vary degrees), muscle tension/ tightness/ cramps ( usually arms and legs only in waves), head pressure ( only when waves are more tense), very mild nausea( only in a wave), headache (about once every 2-3 weeks), goosebumps/ chills without being cold ( only in a waves), intrusive thoughts &songs (mostly only in waves but I’m now able to control them), burning lower legs( only in a wave-mild), neck/ shoulder tightness ( mostly in the morning dread), strange body odor (like rotten medication- comes and goes in patterns of weeks), visual disturbances ( mild- throughout the day wax and wane), dry eyes (mild- some mornings), light & sound sensitivity ( waxes and wanes- mostly occur during waves but much milder now- booming bass is the worst!), intolerance to exercise, intolerance of stress, intolerance of riding in a car and mild loss of appetite occurring when my waves are more intense.

Stress makes them sooooooo much worse. I get waves and windows in a pattern that I can set my clock to. Certain times of the day I get waves. Since getting slammed at my 2 year mark, I’ve had more waves when I usually have windows. These waves have been more intense….milestone? Rapid cycling? I don’t know but I was much better before turning 2 years. I had made much progress in walking, sitting up, self care, chores, and even began riding in a car. BUT this “slam” is different than before….in a good way! This is the first time I’ve gotten slammed with waves and not completely rendered me bedridden or completely immobile again. Yay!!! I can still walk around, fix food, get cleaned up, do chores ( not riding in the car). But, these things are very hard to keep my balance to do them. I immediately have to go lay down for a bit. Progress is progress. Right?

Night time and mornings is when my symptoms are the worse. Out of all of my symptoms the worst are boatiness, ataxia/ balance issues and magnet pulling episodes. All vestibular!

I do have a few symptoms that pay a very short visit especially during a more intense wave. These show up every blue moon mildly….constipation, anxiety, depression, benzo belly and sinus pressure with ear popping.

[[La...]]

Hey everyone -

 

Hope you’re all doing ok - I just drove for 30 mins - yay!

 

Xx

Way to go , Bess! Keep up the good work. That’s my dream to drive again too.

Hugs 🤗

[[La...]]

Lisa,

I'm happy to hear your husband's coming home tonight and you won't have to be alone.

 

As far as this wave I made a post on May 11th about how terrible all my symptoms had flared up. One of the moderators commented that had happened to her right before she healed it took her a couple months and then everything improved. I tried to keep hanging on to that thought. I believe that things have gotten worse for me since that time and recently they've even escalated more so. I don't get a lot of windows and my baseline has never been great. But, recently things have definitely been worse like a wave within a wave. So I'm hoping this is a positive sign, for myself and you. I definitely need a change to occur and hopefully soon. It sounds like you have your waves all figured out. I believe LadyDen does too. I'm not sure what's going on with me it's absolutely crazy! It really is just too much.

 

Becks,

That's great you're able to watch television and use your Chromebook.  And it sounds wonderful to me to be able to lay down. Now for you that might be something you're tired of doing. I have the opposite problem I can be extremely exhausted and unable to lay down unless it's time to go to bed otherwise the fear intensifies. I'm also sensory affected so I can't use the computer or watch television. Using my phone can be a challenge but that's the way I post on the forum. We all definitely have our strengths and weaknesses.

 

JBen,

You are right this really is a beautiful group of people. So compassionate and loving.

 

As far as symptoms go I have symptoms that cycle in and out and there are quite a few of them. One of my worst symptoms is the intense chemical fear. I believe the fear exacerbates my other symptoms like my side pain and tingling and my extreme nausea. I also get a really heavy chemical depression that comes and goes. I also get visited with extreme jaw pain and headache, those come and go . The tinnitus and heart palpitations don't seem that hard to deal with compared to everything else. Night time can be absolutely horrifying. Because I meditate for about an hour or so to get myself in a nice calm State and I fall asleep and then it can be within the hour that I wake up in my first terror attack. That continues through the night I continue to wake up and fall back to sleep and some nights it's hard to get any rest. So, I'm really looking for this fear to be gone soon. I had chemical anxiety last year that was just as terrible and that left me in the 13th month that was June. So I'm trying to stay hopeful.

 

It really sounds like you have your situation figured out when it comes to eating. That is such a blessing. Because then you can take the proper measures to help keep yourself from having a terrible attack. I keep trying to figure out my situation but it's so psychotic I'm unable to. It's a roller coaster ride of horrors. I'm ready to get off this ride now.

 

Bess,

30 minutes. Wow! That is wonderful.

 

Hugs to all you beautiful people!

 

LiveLife

Live, I’m also hopeful that my recent slam ends soon and the end result is my final healing. Wow I pray to God! I’m also having back to back waves since turning 2 years. So I guess we wait it out together

 

[[La...]]

Thank you Lisa and LadyDen.  Much strength to everyone. Good job on the driving, Bess. I've been terrified to get behind the wheel.

Me too, Pashu. I have to be able to make it walking to even get in the car first. Then endure riding in it before I can even consider driving. I really miss driving and going places. It is a freedom, once it’s restored, that I’ll never take lightly again! Some days I walk to the front of my apartment building and I just stare at my car sitting there. I whisper to it that soon I’ll be driving normal again with no fears, worries or symptoms.  If I didn’t have the windows of my symptoms disappearing or nearly gone, I’d think this was permanent. Thank God for those windows!

[[La...]]

Why would my brain still be constantly reminding me  I won't be here, why. It's always there reminding me I'm going to be gone.

Fox, my heart goes out to you. I’m sorry you’re suffering and having those thoughts. Please recognize them as symptoms. Everyone can tell you those same doom and gloom thoughts came to us all. This WD makes people feel like they’re dying and to be honest, we ARE! Here’s what I mean…..

Many buddies going through this often say I’ll be glad to be back to my normal self again. And rightly so! But, after reading the success stories it’s very clear to me that nobody gets their old self back. What we get IMO is a newly functioning CNS. Many former buddies have said this is what they have now. And they testify that they are better than they’ve ever been before starting the pills! Wow isn’t that something to look forward to? So, I think we get a brand new us! That takes the brain some time to do. Some longer than others with each brain doing it in its own way.

From your signature I see that you are kindled - CT, reinstate then CT. This is perhaps why you feel the way you do. Your brain is confused or thrown into shock from the on and then sudden cut off of the medications. It needs time to sort itself out. To “realize” that it can do repairs now that you’re off. The symptoms are unfortunately inevitable. They must happen so it’s ideal to have a plan of daily distractions that you can use as coping tools. Until such a time arrives that you don’t need to do that all day. And that time WILL come. It’s not going to be easy. May I ask what do you do everyday? Activities? Hobbies? Things you like? Can you go places? Take walks? Have someone to visit with you? What do you do to self love- meditation, weighted blanket, soothing baths, self affirmations, etc? Can you read books? Crochet? Watch tv? Sit on the porch? Jigsaw puzzles?

Please know that you are still in there. All is not lost. Right now your brain is sick. Just like any other illness, time will be the healer. Here’s a big hug 🤗 I hope you feel better soon. If you’re religious, IMO, talking to God is helpful.

[[Fo...]]

Why would my brain still be constantly reminding me  I won't be here, why. It's always there reminding me I'm going to be gone.

Fox, my heart goes out to you. I’m sorry you’re suffering and having those thoughts. Please recognize them as symptoms. Everyone can tell you those same doom and gloom thoughts came to us all. This WD makes people feel like they’re dying and to be honest, we ARE! Here’s what I mean…..

Many buddies going through this often say I’ll be glad to be back to my normal self again. And rightly so! But, after reading the success stories it’s very clear to me that nobody gets their old self back. What we get IMO is a newly functioning CNS. Many former buddies have said this is what they have now. And they testify that they are better than they’ve ever been before starting the pills! Wow isn’t that something to look forward to? So, I think we get a brand new us! That takes the brain some time to do. Some longer than others with each brain doing it in its own way.

From your signature I see that you are kindled - CT, reinstate then CT. This is perhaps why you feel the way you do. Your brain is confused or thrown into shock from the on and then sudden cut off of the medications. It needs time to sort itself out. To “realize” that it can do repairs now that you’re off. The symptoms are unfortunately inevitable. They must happen so it’s ideal to have a plan of daily distractions that you can use as coping tools. Until such a time arrives that you don’t need to do that all day. And that time WILL come. It’s not going to be easy. May I ask what do you do everyday? Activities? Hobbies? Things you like? Can you go places? Take walks? Have someone to visit with you? What do you do to self love- meditation, weighted blanket, soothing baths, self affirmations, etc? Can you read books? Crochet? Watch tv? Sit on the porch? Jigsaw puzzles?

Please know that you are still in there. All is not lost. Right now your brain is sick. Just like any other illness, time will be the healer. Here’s a big hug 🤗 I hope you feel better soon. If you’re religious, IMO, talking to God is helpful.

Thank you so much for replying to me, I am at the lowest point I've been at, it means more than you can know I instantly started to cry.  Looking back when I first got off, I kept trying to figure out what happened to me.  I stopped the ssri,  and benzo for 1 month and started a new job, then I took ativan a few times, and also started buspar. I developed muscle aches at the job, and felt really weak, no other symptoms but it felt abnormal.  Then later in the evening I developed numb wrists and ankles, and my hands almost felt like I'd been using them for hours and hours. I had no idea what could have caused it, after that it turned into what felt like glass in my hands and feet, and that lasted for 8 months and I even had nail color changes, like a pale color with slight purple, when I would exercise I would get raynauds like symptoms and my fingers would shrivel. It seemed very vascular. I've been to the doctor a million times since this happened. No answer.  I wonder if it's possible the buspar could have caused this to happen .... I've spent a long time not knowing and really want to know what caused it. I just wonder opinions. I wonder if the drug could have caused reduced blood flow or maybe was it the ativan kindling.  I'm just tired of not knowing

[[La...]]

Fox, I’m not sure but it could be a combination of kindling and buspar. Because you were in unknown WD, your body could have over reacted to the buspar. Unfortunately there may be no way of you ever knowing so if I were you I would just not dwell on it….let it go. What’s more important is that we heal.

This is why I don’t sit and waste too much time trying to figure this out. And also I’m mindful that there must be a good reason why we can’t figure out this. Possibly it is for our own good not to know too many details. We probably can’t handle it. So I focus on as much positivity as possible. To feed my brain some goodness. 

 

[[Fo...]]

Fox, I’m not sure but it could be a combination of kindling and buspar. Because you were in unknown WD, your body could have over reacted to the buspar. Unfortunately there may be no way of you ever knowing so if I were you I would just not dwell on it….let it go. What’s more important is that we heal.

This is why I don’t sit and waste too much time trying to figure this out. And also I’m mindful that there must be a good reason why we can’t figure out this. Possibly it is for our own good not to know too many details. We probably can’t handle it. So I focus on as much positivity as possible. To feed my brain some goodness. 

 

Thank you for taking your time, it means alot...I always say that but you just don't understand,  I am so thankful for your time. I was doing well around 7 months by ignoring symptoms and pushing myself more and staying busy despite the early hours of crazy.  I then started a new job and was what seemed like thrown back into acute, I couldn't handle the stress and driving and when I decided it was too soon and quit I really started allover with panic and dysregulation.  I started feeling freezing alot and clammy, what's strange is for most of this I have had extreme body pain, and now the pain has lifted some but I am back to very anxious.  I will take your words and apply them to my daily.  I am alone most of the time and it can be very scary. Thank you so much

[[de...]]

Good afternoon!  Just wanted to reach out for some encouragement today.  I am really struggling.  So much anxiety, depression, nausea, head pressure, tingling, and the list goes on!  Feeling so defeated.  Lately I have had a very hard time talking myself off the ledge.  I used to be able to grab hold of some positive thoughts and sort of regain my "balance", but I can't seem to do that now.  Everything is just gloom and doom; worried about everything.  I wish I could be more positive and offer some encouragement to those of you who are also struggling, but I am barely hanging on myself!! 

 

So grateful for this group!!

[[Th...]]

Stitch:

 

Are you able to put your drug information in your signature and where you are currently?  If not, I totally understand.  It isn't required, it just helps us know where you are in this process.

 

I appreciate your understanding. Though you are right, it is helpful.

 

But they had me on over 15 drugs. I was on at least 10 drugs at once that they kept switching out. benzos not included. They also where giving me four different benos throughout the week. They thought rotating them throughout the week would be good? Then they CTed me off everything except the three listed. Before the CT I was already a mess. This was all under a year. The doctor ignores my request for records so I don't have a complete list of the drugs I was given. I know about 17 of them.

 

Zoloft was the last one I was CTed off. The others on the ones I am still on.

 

I don't have enough room in my sig. I couldn't figure out how to list all them. Maybe if I didn't have benzo brain I would see the obvious way? Like "Way too many drugs" It might be for the best because I do not want to scare anyone.

 

I got drugged because I lost a friend. And drugs were given not counselling. I was grieving not depressed.

The doctor also was corrupt I found out later. He purposely diagnosed people wrong and overmedicated them. He hurt a lot of people. He should lose his licence, but doctors have too much protection.

 

 

Sorry for the wall of texted. I guess I rambled and a lot of it wasn't important to your question. But I really can't figure out how to fit it. 

 

For now I am doing ok. Not great but I am managing. 

 

I just got out of the doom cloud.It will pass. Hang on tight.  When that feeling comes I just have to wait it out and hang on to anything. Hang on until it passes. Hope comes and goes. It will come again. You can make it through. Things seem dark right now. But the nature of withdrawal is that it changes, even if it doesn't feel like it.

[[Th...]]

I also would like to mention Stitch did her best to help him as well. He appreciated that very much, Stitch!

Thank you, Lady Den. That sincerely means a lot.

[[de...]]

Stitch:  oh my goodness.  I am so sorry for my insensitivity!  I had no idea you were on so many drugs!  Of course, you cannot put all that in your signature. 

 

You are a warrior!!!

 

Thanks for your encouragement! It means a lot!!

 

Hope you are having a decent day!!

[[He...]]

Good afternoon!  Just wanted to reach out for some encouragement today.  I am really struggling.  So much anxiety, depression, nausea, head pressure, tingling, and the list goes on!  Feeling so defeated.  Lately I have had a very hard time talking myself off the ledge.  I used to be able to grab hold of some positive thoughts and sort of regain my "balance", but I can't seem to do that now.  Everything is just gloom and doom; worried about everything.  I wish I could be more positive and offer some encouragement to those of you who are also struggling, but I am barely hanging on myself!! 

 

So grateful for this group!!

 

Decatur,

 

I'm so sorry you are having such a rough go of it.  It sounds like your body and brain have it all going on right now. You're doing all the things!  I have been there and it's just miserable.  My bet is that better days will come. It feels dreadful right now but better days should be ahead.  I am sending you a hug and hopes for some easing of all the heaviness and pain. 

 

Helen

 

[[Pa...]]

Thank you Lisa and LadyDen.  Much strength to everyone. Good job on the driving, Bess. I've been terrified to get behind the wheel.

Me too, Pashu. I have to be able to make it walking to even get in the car first. Then endure riding in it before I can even consider driving. I really miss driving and going places. It is a freedom, once it’s restored, that I’ll never take lightly again! Some days I walk to the front of my apartment building and I just stare at my car sitting there. I whisper to it that soon I’ll be driving normal again with no fears, worries or symptoms.  If I didn’t have the windows of my symptoms disappearing or nearly gone, I’d think this was permanent. Thank God for those windows!

I've driven twice but no more, it's not responsible to get behind the wheel with my current cognitive functioning. Luckily I can get where I need to with my bike or public transport. Glad for your windows! Have had no windows myself so the fears of this being permanent have been clouding my thoughts. It's been getting increasingly tough, but eyes on the prize.

[[Be...]]

Fox, when I was in tolerance w/d I went to see a Neurologist and he ran an ANA blood test and it was positive and high and he told me I had Lupus, and then he did an EMG test and noticed that I had Carpal Tunnel Sydrome.  And then I was referred to a Rheumatologist and she ran another ANA blood test and it was positive, and then she ran more blood tests and diagnosed me with Raynaud's Syndrome and the Lupus was confirmed.  I have a procoagulant antibody in my blood called Anti-Beta 2 Glycoprotein 1 (IGM).  I also went to a Hematologist then and he diagnosed me with Thrombophilia because of my procoagulant autoantibody in my blood.  I'm at risk of stroke and heart attack.  Maybe you can have your doc run an ANA blood test which screens for many autoimmune diseases?  I was told to take Plaquenil for the Lupus, and I took one pill and it made me feel very bad.  Then she wanted to give me Gabapentin, but since I'm prone to depression she wouldn't give that to me.  Then she gave me a script for Seroquel and I got that filled and took a bit of that for awhile, but it made me feel horrible.  So now all I take at bedtime is a baby aspirin or two.  I also was diagnosed with Lupus Encephalitis a few years ago which explains the severe head pressure I've got all the time.  Also diagnosed with Memory Impairment, Amnesia and Stuttering too a few years ago.  Also diagnosed with Paroxysmal Tachycardia too a few years ago.  This all explains why I'm so sick now.  The drugs have damaged me severely.     

[[Li...]]

Hello to all my buddies. I'm so sorry for any that are struggling. And hoping that others are having an okay day.

 

Lisa,

It looks like you and I are in the same boat still. I am feeling exactly what you said. Want to be positive and encouraging but struggling so badly. Just in tears I really need a break. I know you do too. I so hope that all of us get a wonderful window soon.  Hugs!

 

LiveLife

[[Th...]]

Stitch:  oh my goodness.  I am so sorry for my insensitivity!  I had no idea you were on so many drugs!  Of course, you cannot put all that in your signature. 

 

You are a warrior!!!

 

Thanks for your encouragement! It means a lot!!

 

Hope you are having a decent day!!

I do not think your insensitive, you even said it was understandable. You are hanging in there! Keep going! 

[[le...]]

Hope you are all doing OK, still struggling bit here. Sort of in acceptance mode at moment, realise this takes as long as it takes, trying to distract is good, but trying keep fighting it , or pushing yourself too much, doesn’t make you recover any quicker, I just end up more frustrated and depressed. Try keep remembering what Jennifer Leigh said everyone recovers regardless whether  you think you will or won’t, but obviously if you are more positive person like Lady Den helps the journey, and makes everyday life more tolerable. But for those of us struggling, who find positivity hard ,believe me  with mental symptoms it’s super hard, it doesn’t mean we won’t recover. My words wisdom for the day😃

[[La...]]

Fox, I’m not sure but it could be a combination of kindling and buspar. Because you were in unknown WD, your body could have over reacted to the buspar. Unfortunately there may be no way of you ever knowing so if I were you I would just not dwell on it….let it go. What’s more important is that we heal.

This is why I don’t sit and waste too much time trying to figure this out. And also I’m mindful that there must be a good reason why we can’t figure out this. Possibly it is for our own good not to know too many details. We probably can’t handle it. So I focus on as much positivity as possible. To feed my brain some goodness. 

 

Thank you for taking your time, it means alot...I always say that but you just don't understand,  I am so thankful for your time. I was doing well around 7 months by ignoring symptoms and pushing myself more and staying busy despite the early hours of crazy.  I then started a new job and was what seemed like thrown back into acute, I couldn't handle the stress and driving and when I decided it was too soon and quit I really started allover with panic and dysregulation.  I started feeling freezing alot and clammy, what's strange is for most of this I have had extreme body pain, and now the pain has lifted some but I am back to very anxious.  I will take your words and apply them to my daily.  I am alone most of the time and it can be very scary. Thank you so much

Thank you for sharing. I’m sorry you’re alone often. I’m also alone physically most of the time. I know what that’s like. I said physically because I know God is with me for he is omnipresent. That makes it alright in my world. He made me a very creative person. So oftentimes I play games online with others, visit zoos aquariums museums monuments etc around the world on YouTube. It serves as a great way to go somewhere even though I can’t physically as well as learn things. Perhaps give it a try? I usually pick a country a week and go from there. Gives me something to look forward to the next day. 

Oh I almost forgot…..there are also live cams of zoos and national parks 

With time things will settle down. Be encouraged my dear!