18 - 30 Month Plus Group

[[...]]

....... I also asked him if as it's still so bad, does that mean it's going to go on for a long time yet and her said "no not at all, it could turn tomorrow, not meaning it just stops but there is a marked improvement". this is the case when you don't have obvious windows and waves. I have been told that any decrease in symptoms is considered a window. I don't know if this makes sense as I have massive brain fog today again, really struggling with work again. Just telling myself I've done it before and my life is on hold at the moment. UGH!

[[Ir...]]

Irish,

 

If your symptoms were all due to Lyme, would they have appeared coincidentally after the alcohol?  These Lyme tests are oftentimes unreliable from reading the posts on this forum.  Do you really want to be diagnosed with a "maybe" Lyme disease and have to take a long course of several antibiotics that could effect your gaba receptors?  I would be really hesitant to move forward and treat a disease I may not have with powerful antibiotics unless the Lyme tests were 99% conclusive I definitely have it.

 

Of course, you don't want to avoid treating a disease you definitely have.  I just hope you get an iron-clad YES YOU HAVE IT before undergoing the treatment.  I'm very skeptical of Lyme diagnoses after reading about it so much on this forum.

 

Good luck!

 

Sofa

 

 

I do like your skeptical opinion of it. I really can't understand how so many people on benzos/SSRI's get diagnosed with Lyme Disease - the symptoms are identical, and often they are given a clinical diagnosis. I have heard the tests are unreliable, so unreliable that Lyme enthusiasts tell others to disregard them if they're negative, but accept them if they're positive. That is clearly flawed logic!

 

People say with Lyme they have intolerance to exercise, coffee, foods, and alcohol. Which from my reading Benzo/SSRI withdrawal do also, right? I tried 2 tablets of antibiotics and I felt like I couldn't breath and my head felt very heavy and everything was going in slow motion, and my balance and dizziness got worse. People told me this was a 'herx' which indicates Lyme bacteria being killed off, but I really don't know. Do withdrawal people react badly to antibiotics too?

[[dr...]]

Irish...that's a rabbit hole you don't want to go down.  When in doubt look to the most obvious catalyst.  You quit benzos/ssri and those symptoms are common for quitting those drugs.  So that is the most likely expanation. 

[[St...]]

There's a famous billionaire in the UK whose son has Lyme disease and has obviously spared no expense in trying to cure his son. Part of this process was getting the same private lab in Germany that diagnosed his son to test his entire extended family. It turned out all 20 members of his extended family tested positively for Lyme, if this German lab are to believed. The billionaire actually believes the lab and just thinks his son is symptomatic but the other members in his family are not symptomatic yet. As for how they all got Lyme if they didn't all get tick bites, he and the lab now believe that Lyme is an airborne illness as in you can catch it like a cold and they are now trying to prove this.

 

I also know the best Lyme treatment clinic in the world whose treatment programme costs a minimum of £20,000+ diagnose people using a 'super computer' that has pads attached to it that get put on the patients skin and then ten minutes later magically tells them every illness they have, without even the need for a blood test Sorry but I just don't buy it. There's a lot of money involved in this, personally I did all the traditional Lyme tests recognised by the NHS and they all came back negative and that was good enough for me

 

It was psych meds that fucked me up not a tick!

[[...]]

Thanks for bringing up lyme disease!!! Already got triggered yesterday by someone else mentioning another disease. My health anxiety is awful as I'm sure others are. Trying to be positive and supportive here. 

[[Si...]]

I had a relatively ok day yesterday. I'm feel like I'm at a 10 today with symptoms. I'm sorry marj, I can't believe we are all in this garbage. I'm still shocked everyday that this happened to me.

[[Ir...]]

Irish...that's a rabbit hole you don't want to go down.  When in doubt look to the most obvious catalyst.  You quit benzos/ssri and those symptoms are common for quitting those drugs.  So that is the most likely expanation.

 

Drew - you're so right. It has been a huge rabbit hole from me. I wish I had never asked Dr. Google at the start of all this to ask why I was having all these symptoms. Everything kept pointing to MS, Lyme and Anxiety - of course Lyme consists of MS and Anxiety symptoms. Such a winner of a disease, it has everything imaginable!

 

It is the most likely explanation! My mind is just so doubtful at this being real. It's like being in a dream/nightmare. Everything you're told by medical professions has to be rubbished and now I've a lack of trust for anything they say.

 

 

[[...]]

Was thinking about you earlier Siggy, wondering how you are. Good you had a better day, that's something. i know it sucks so much, I'm a mass of anxiety today. Keep going Hun 

[[ne...]]

NCT,

 

As you know, the early morning rush of heart pounding head whooshing dread and fear is my worst symptom since the beginning of this mess.  Cortisol is at its height in the early dawn hours for all people, withdrawal or not.  Our cortisol is too high due to the downregulation of our gaba receptors, so our symptoms rage with the excitatory glutamate neurotransmitters firing off.  That's all this is.  It's a natural occurrence in everyone's body that rages in ours until the gaba/glutamate connections are working in synch.

 

Sofa

 

Thanks Sofa....Lets hope the damn cortisol goes down soon for us eh?

[[ne...]]

....... I also asked him if as it's still so bad, does that mean it's going to go on for a long time yet and her said "no not at all, it could turn tomorrow, not meaning it just stops but there is a marked improvement". this is the case when you don't have obvious windows and waves. I have been told that any decrease in symptoms is considered a window. I don't know if this makes sense as I have massive brain fog today again, really struggling with work again. Just telling myself I've done it before and my life is on hold at the moment. UGH!

 

Thanks for this marj....it makes perfect sense but hope that brain fog soon lifts for you.

 

 

[[...]]

....... I also asked him if as it's still so bad, does that mean it's going to go on for a long time yet and her said "no not at all, it could turn tomorrow, not meaning it just stops but there is a marked improvement". this is the case when you don't have obvious windows and waves. I have been told that any decrease in symptoms is considered a window. I don't know if this makes sense as I have massive brain fog today again, really struggling with work again. Just telling myself I've done it before and my life is on hold at the moment. UGH!

 

Thanks for this marj....it makes perfect sense but hope that brain fog soon lifts for you.

 

 

You're very welcome NCT. Just wish it would all go for all of us.

[[jj...]]

Irish, I don't "see" waves in carpet or grass but I do feel something like that when I'm walking. It's like walking in one of those kid's blowup jump castles. The ground feels like it's rubbery and has give.

 

Guys, I've done the OMG!!! I have MS or Lyme's or stroke or brain cancer thing but here's the deal, we all are talking about the same symptoms and we all took benzodiazepines. It's the benzos. Whether it takes a couple of months or ten years, we'll heal. In the meantime, life sucks. It will just be all the more sweet when we are recovered.

[[Ir...]]

There's a famous billionaire in the UK whose son has Lyme disease and has obviously spared no expense in trying to cure his son. Part of this process was getting the same private lab in Germany that diagnosed his son to test his entire extended family. It turned out all 20 members of his extended family tested positively for Lyme, if this German lab are to believed. The billionaire actually believes the lab and just thinks his son is symptomatic but the other members in his family are not symptomatic yet. As for how they all got Lyme if they didn't all get tick bites, he and the lab now believe that Lyme is an airborne illness as in you can catch it like a cold and they are now trying to prove this.

 

I also know the best Lyme treatment clinic in the world whose treatment programme costs a minimum of £20,000+ diagnose people using a 'super computer' that has pads attached to it that get put on the patients skin and then ten minutes later magically tells them every illness they have, without even the need for a blood test Sorry but I just don't buy it. There's a lot of money involved in this, personally I did all the traditional Lyme tests recognised by the NHS and they all came back negative and that was good enough for me

 

It was psych meds that fucked me up not a tick!

 

Stuckindoors - I'm very familiar with that man. He owned Carphone Warhouse or Phones4U or something like that. I'm half in and half out with Lyme disease all the time (the doubt and worry with the health anxiety is unbelievable) and I watched him do that interview while I was like... oh god, there are so many people watching this and the misinformation is rife!

 

I was not aware however that 20 of his extended family members have it. Now that is really really suspicious and taking the biscuit! I was like "Oh come on, your whole family got tested and has it too!?". I didn't realise his family was asymptomatic. I couldn't  care what disease or illness I had to be honest, as long as I was asymptomatic.

 

If you've ever been on the Lyme disease forums they believe its sexually transmitted and the majority of the have it, but are just not affected by it for some reason. They compare it to STD's which can lay dormant and transmit from mother to child etc. They also believe that the medical profession has a huge conspiracy against them to prevent them getting cured because it 'costs to much money' apparently. A lot of them have completely negative tests and are still pushing for treatments. I would be screaming with joy if I had a full negative and then never revisiting the issue.

 

Unfortuantely, I went and got and NHS test too. Half of it came back 'strongly positive' - the ELISA I think it was. The report said to send bloods back again (I assume this was the Western Blot part. It came back saying it couldn't back up the first positive due to an inhibition of the IgG. So my doctor decided to just say I have it, as its the ONLY thing that has cropped up in tests to say theres something relating to my weird symptoms. It knocked me for six! Now I can't get it out of my head. I demanded to be referred to an Infectious Disease Doctor in order to get a proper analysis to make sure this isn't a rookie GP error (which I think it is, and is largely damaging if I believed it 100%). I also need to get answers on why my first test was 'strongly positive' - what on earth is it detecting. I need to be tested again by the ID doctor, but I don't want to ask that doctor or GP service again as they've stuck a thing on my file saying I've been a confirmed case of this rare disease.

 

The majority of me doubts I have it, and the timeline alone indicates that this is SSRI withdrawal. However I just can't get enough people with my symptoms from the SSRI forums to back up my case. Yes plenty of Benzo people but the survivingantidepressants page isn't as active to help me reassure myself.

[[Mi...]]

Well,

 

 

All this fun talk about diseases used to put me into a downward spiral....

But, I can handle it a bit better so my OPINION.....

 

I have wasteds countless days under the covers fearing brain tumors, Lyme's, MS, heart attacks, strokes, air way closures, throat cancer/swallowing problems, every GI disease possible, strokes, kidney failure, blood clots, and COPD etc... etc... etc...

The mental disorders are to long to list SO we will leave it at every mental disorder known to man kind!

 

Yes we may have a under lining condition but 99.9%  of us are experiencing benzo withdrawl and until this is accepted and I mean really accepted your going to go mad.....

 

IMO.....

 

Now knowing its WD and accepting its all WD doesn't make it easy but it sure as hell helps...

There is no cure no antibiotic no surgery....

But you will heal in TIME.....

It is not a death sentence.....

 

I completely understand the health fears mine still rears its ugly head now and again....

And my health fears through out this were off the charts.... 

 

I was lucky enough to find a naturopath that held my hand and repeated over and over its just withdrawl...

I think if more Doctors could/would do this many many people would be more accepting...  And this journey would be less frightening for many...

But when you have the entire medical community telling you WD is not a thing its hard really hard to accept that that is indeed what you are experiencing... 

 

And it adds a whole other level of hell to this entire experience....

 

Don't get me wrong I am not a anti doctor nut...  Science has come along long way and if your actually having a heart attack or something they truly have some great advances in saving lives in a emergency....  And a Urgent Care for a strep test, or xray for upper respiratory...  But beyond that forget it! FORGET IT.................

 

If you are the type of person like myself who needs the reassurance of a Doctor please find someone who practices functional medicine or someone with a holistic base...  The older I get and after this whole experience I am completely convinced that Big Pharma is bigger than I ever thought possible and truly more corrupt than the average person can even comprehend.

 

Again Just my OPINION.

 

 

[[...]]

Thanks Jen for your reassurance and sensible post Health fears are relatively new to me, maybe the longer this goes on it worries me idk. I know you've helped me privately about them. I find I'm so easily triggered, probably with so many other stressors going on. I just wish if someone wants to discuss what else this could be they would start a more appropriate thread somewhere else in the forum. Benzo WD creates enough fear. I have some benzo rage today, it's probably obvious. Sick of making it through each day, trying to be normal and dodging shit.

 

Hope you're feeling a bit better 

[[Te...]]

I'm in tears here....I just don't get this crap....I woke up at 3:00 this morning with severe pressure in between shoulder blades it's so tight...yes it's not as bad as it was earlier today but I just can't handle another symptom....has anyone woke up to severe muscle tightness ....does my body never relax?

 

Maybe this isn't withdrawal....I reslly feel like m dying today just can't take another physical symptom my poor body....

 

I'm I the only one that feels like their body is slowly shuting down?

 

TM

 

[[...]]

I'm in tears here....I just don't get this crap....I woke up at 3:00 this morning with severe pressure in between shoulder blades it's so tight...yes it's not as bad as it was earlier today but I just can't handle another symptom....has anyone woke up to severe muscle tightness ....does my body never relax?

 

Maybe this isn't withdrawal....I reslly feel like m dying today just can't take another physical symptom my poor body....

 

I'm I the only one that feels like their body is slowly shuting down?

 

TM

 

 

TM no you are not!!! I am exactly the same and had a similar night, just awful.  I cried in the night as I just can't bear it. My body was in spasm. Just come home from work crying again so you are not on your own, no way. We are tired, been suffering a long time, too long. It's withdrawal and it will end soon.

 

Hugs Hun

[[ne...]]

TM....sadly yes, I wake with muscle tightness every day and  has been my worst symptom every single day since I stopped that damn benzo!  Its withdrawal !!

[[Te...]]

Thanks you guys I'm just so overwhelmed so many different pains it just is so much to handle and if I went to ER....where would I even begin to explain I got pains from teeth,mouth,tight throat,and tight painful muscles all over...what the shit....I still think that the darn extracted root canal left some type of weird infection that is killing me slowly...it's sounds stupid I know....but this all started when the root canal cracked and I was still on the darn benzo......then stopped....but how can my teeth and jaw Squeeze all day and I swear I got this nasty taste almost always....sorry but why oh why did I take the little pill for eight years....if I would of known this  could of happened I would of done a slow taper...ok I'll just shut up

God bless you all cause this just sucks....

 

TM

 

[[so...]]

Buddies,

 

Nobody on this thread has some undetected illness that is slowly and methodically deteriorating us.  This is withdrawal and recovery from a particularly disgusting drug that temporarily altered our brain connections to keep us running smoothly.  That's all this is.  Regardless if you have muscle tightening, nerve burning, spasms, heart racing and palps, GI problems, dizziness, respiratory issues, anxiety, depression, phobias, FEAR.....it's all part of the healing.  The more we suffer, the more repair is happening.  Yes, this shit takes years to resolve completely.  It's amazing that our brains and bodies can untangle this ungodly mess.  But THEY CAN.  Our bodies were designed to heal us, just like self-cleaning ovens.

 

Sofa

[[Te...]]

Sofa,

I just love your kind words....your always so positive.....thank you....!

 

TM

 

[[so...]]

Buddies,

 

It finally happened.  After 28 months and one week, I woke up at 5:30am with the normal cortisol raging at a low simmer.  It was still there in the background a little, but it was NOTHING like it had been for 28 months and one week.

 

Unbelievable.  I'm still in shock and it's 2pm.  I fully expect the possibility that it may return, but this was the one morning I've been praying for.

 

Sofa

[[Ki...]]

SOFA!!!!!!!  :yippee:

[[so...]]

TM,

 

My sweet friend.  Throughout this journey I have felt "more broken" than everyone else on this forum.  So many people tried to reassure me that the 4am cortisol horror would leave like it did for them.  But mine didn't leave.  Never even missed a beat.  Relentless.  I was sure I was "stuck" in this no fun house of distorted mirrors.  I was proven wrong this morning.

 

We all have two or three symptoms that seem like they will never let go of us.  Which of the hundreds of symptoms that make up the Wheel of Misfortune, and are the mainstay buggers, are different for each of us.  It doesn't make us a more hopeless worst case.  They are just the mainstays we are personally dealing with.  Drew has his migraines and exercise intolerance. You have the nerve and muscle pains.  Siggy has insomnia.  Marj has cognitive issues and muscle pain.  Jen has throat closing and respiratory crap.  I have cortisol shit, head pulsing and heart racing.  Lockie has fatigue.  Stuck has chemical anxiety, food intolerances and he can't watch TV.  Irish has dizziness.  NCT has the cortisol crap and chemical anxiety.  MTFan has insomnia and cognitive issues.  WE ALL HAVE OUR PERSONAL FAVORITES.

 

We are all the same and we are all different.  Look how PrettyDaisys is healing!  It's wonderful to watch someone who has suffered so long and so hard, has been so brave and so positive that she will heal someday, start to turn corner after corner.  If she can do this, so can we!

 

I've got my arm around you TM.  I am holding you up.  You will not fall.  You will pay your dues for however long it takes and you will completely recover.  I will not leave this forum until we each walk out of here on our own two feet.

 

Love you, Sofa

[[jj...]]

Good to hear sofa, you're getting there