Mort81

[Mort81]

No its through my work insurance company. I am still employed but on a leave of absence. So I am eligible for 60% of my salary until healthy enough to work. So that's the only reason I am seeing any doctors because it has been so traumatizing since day 1. 60% of my salary is enough to pay my bills but not much more.

[Junglechicken]

I understand Mort, our (hubby and me) savings are disappearing fast and neither of us has a job yet.

[Mort81]

Ya similar boat. My partner is working but we are dipping into our savings aswell every month. Her salary can't pay the bills. When I am healthy enough to work at all than I will. But this is so hard to predict.

[Mort81]

I think that's what makes this problem so unique and difficult. You suffer the withdrawal symptoms than get no support from doctors who tell it's in your head. Than when you can't work anymore your left to rot financially. Not to mention being isolated from almost everyone else who thinks its in your head

[Junglechicken]

Yup exactly, and currently we're running two households - one here in the UK plus mortgage and bills in Canada, lol

[greentrain]

Hi Mort, my fellow Lexapro tortured soul! I avoid doctors like the plague as well.

I've had them tell me my chronic lyme kid was faking it and needed to see a psych. Also one told me to put my ill 8 yo in a wheelchair and send her to school and that would snap her out of it.

Unless it's catastrophic we try to manage as much as we can away from MDs.

[LexAnger]

Hi Mort,

 

I know how you feel about your visit to your neurologist!

 

its not surprising to get that reaction from all doctors. I remember years ago when I saw my neurologist for the side effects I got from tapering Lexapro. When I told him I am at 2.5 mg he said never heard about that dosage, and what hardened my heart the most is his comments about my complain about the severe pain etc. saying many people are having severe health problems like cancer, stroke etc., why you are here to complain your pain that is impossible to be caused by any meds!

 

I am also in the same boat thinking about disability benefits. My physician is not comfortable to provide anything for me. Dr Shipko is in acknowledge of the WD but he doesn't provide such support to his patients saying its a conflict of interest due to his relationship with most insurance companies. I recently found another Pcod who seems ok to provide a statement, but he himself doesn't believe WD, would only diagnose mental illness which is not the case for me and I don't want to be mis-labeled just for the sake of the benefits. 

 

SO I most probably will take the family leave which is easier for be accepted.

 

hardest situation for all of us, suffering the most crazy and extreme symptoms without understanding/believe along with financial hardship.

[Christian]

Hey Mort. I see a psychiatrist and therapist in the same office. My diagnosis is "anxiety, other". Meaning the other is WD. This serves two purposes. One for disability and the other for insurance requirements. I'm assuming you are on Cobra through your employer. It so your visit costs usually are covered by co pays. For backup, my GP referred me to a Phisiatry Dr who can both diagnose and treat (through rehab) CFS. I have bad fatigue. I know you have mentioned you have as well. Hope this helps !

[Mort81]

Greentrain wow some of the nerve of these doctors is unreal. I agree and would want to avoid then like the plague!.. I don't know what would piss me off more telling me im faking it or if my kid was sick and they behaved liked that.

 

Lexi thanks for the response. I know how you feel to be undermined like that. I usually am good at standing up for myself but feel a bit vulnerable during this time. I told the guy hes out to lunch several times and that he clearly doesn't get it. But the old me would have told to him to F-- off and would have cut the appointment really short. So kinda annoyed I listened to his rant. It really is scary how little they know about this. To the point where they think its a joke when we are living moment to moment. It would be impossible to have such symptoms be in your head. I don't understand why Dr Shipko would be like that. Basically he understands how bad this syndrome is but won't help his patients financially? The conflict of interest should lie with his morals as a person. I don't have respect for that.

 

 

Hey Christian thanks for the tips, im not sure where I am going to go with this at the moment. Maybe just quitting my job and not seeing any doctors would be the way to go. Whenever I get better id just need to find a new one. That's my only reason for seeing my GP Is i need monthly notes to keep my Job until ready to go back. But I can tell shes getting tired of my lack of progress.

[Mort81]

All visits are covered in Canada except for Psychologist. Which funny enough is the only guy who understands it.

[LexAnger]

I agree with Mort about Dr Shipko on this one.

[Mort81]

I keep replaying my appointment. I want so badly to hurt this guy. Uggghhh

[btdt]

I do not understand how a relationship with insurance companies can make writing a note for accessing insurance benefits for a patient a conflict of interest??? 

 

what on earth is his relationship with the insurance?  do not all doctor have a relationship with insurance and they still write notes and fill in forms to access benefits why would he be any different?  

 

I don't get it.  Some body should ask him to explain this. 

[btdt]

I keep replaying my appointment. I want so badly to hurt this guy. Uggghhh

 

Try to let it go Mort be glad he did not give you any pills.  Be thankful you know as much as you do it was a neurologist that took me off effexor cold turkey and tried a lot of other pills that did not work. I finally quit them all again by myself when I ended up in an unnamed hell then suffered many months before I found paxil progress and got my first clue even after that I was not sure if I could believe it for a time.. then there was a bingo moment when it all clicked.  I started learning when I was in cold turkey long after seeing the neurologist.

 

 You could try a second opinion I thought there was one Canadian doc on the recommended doc thread I recall checking it and not being too impressed it may have turned out to be a psychologist... I can't recall. 

 

One alternative may be to pay the money to Healy ask up front if he will give a written report for your insurance... he has an online option but it is expensive. 

wishing you peace

[Mort81]

Thanks BTDT  You are right , I think in WD everything is magnafied so is my anger .  Yes my Pdocs letter is great ,it diagnoses me correctly.  I only saw this guy because my GP reffered  me to him before she received my Pdocs diagnosis. Because before his letter , my GP was treating me like I was neurotic. So the GP said eventhough we have a diagnosis from Pdoc I would still like you to see the neurologist.  and she must have told my insurance company this because they called me and told me they wont process my report until they get that letter.  So I agreed only if my GP sent my Pdocs letter to him because as you and I both know the knowlegde of these meds are poor.     So eventhough the neurologist had my letter from the PDOC  which is an excellent letter . I wonder if I could post it here.  Anyway  The Jerk neurologist igonored the letter and tried to belittle me and was actually smirking about the letter.  I dont know how I didnt throw a punch lol. I guess it surprised me so much his actions , It caught me off guard.     Anyway I think I am done with docs for good unless it is my Pdoc who refers me .

[Mort81]

I figured out his email or one of his addresses.  I write him an email but not sure hed care. I was thinking of something like since your knowledge of these medications is so poor I would like to help educate you. Here is an attached file from rxisk.org from better experienced doctors on discontinuing SSRI's . Maybe it would make me feel better , maybe not I dont know 

[btdt]

Maybe that is the only way they learn is by patients telling them.  I don't know I don't want to take on more than I can handle and I have this creepy feeling I don't need any more blow back as I have enough of that already.  I still am angry about my docs cold turkey off of effexor and yet I have not addressed it cause I don't feel up to it. I really don't and I have this bit in the back of my mind that says to me they all f...g know which may not be true at all but to me it seems like how could they not know... I am sure they are getting a lot of people like us. 

 

If your going to take him anything ask Alto what is the best scientific items to send or take... I would do it anonymously if at all cause we the injured while we may be the only ones to tell of it ... are not responsible for educating doctors or should not be it is not fair we have to take on an extra burden right when we are least able to articulate or defend our positions.  In the old days when I had a brain I could do that but now not so much.. and I am sure I would lose my **** and it would just prove I am nothing more than a mental patient who went off the drugs I need... nope it is a lose lose thing for me and I personally am not taking that on.  

 

Maybe as a group healed we could some day do this but alone while at the mercy of docs it is just stupid in my opinion. I lost it at my own docs recently and said some stupid things about my neurologist which I wish I did not say as I could see it raised her eyebrows... your lucky to have one doc you gp on your side... take that and fly with it. It may be that although the neurologists report goes to he insurance it won't make any difference to your claim.  If it does appeal it and seek a second opinion....you still have your gp which is rare.  

 

I do not for one moment think that doctors are above retaliation should you challenge them so it may be in part fear that keeps me quiet.  

[Mort81]

I dont think he will actually read what i send him , I just wanna take a shot at him. I have always had a bit of a revengefull personality.  Playing physical sports my whole life I would always get even . Its part of my make-up good or bad. But the vulernability and helplessness you feel when this sick is certainly tough to swallow. The verbal and I guess mental abuse from certain physcians while battling your withdrawal symptoms can make even the calmest of people Rage.  I think in the next week or two I wont think about it anymore. Im just looking for an immediate fix from my anger.

 

I think your right with everything you said . I do think as a group when healed we will have enough of an army to make a big change.  More and More  people every year will recover and want some recourse.  A motivated Angry and healthy person can make  little change . But if that number is in the thousands or hundreds of thousounds than look out!

[Junglechicken]

Ha! Maybe we could all plan to stand outside the White House one day?!

[Mort81]

hahha its possible I guess ,we all live in different countrys though.  But id make the trip .If there was a one stop shop  or place for everyone whos been harmed by these drugs to meet or get organized the number of us would no doubt be in the hundreds of Thousands maybe more.

[Junglechicken]

Yup, I'd be prepared to go wherever to send the message out to the rest of the world.

[btdt]

it needs to be something global... not sure what.  there are two international AD site one is closed the other associated with scientology I think the closed one may not be completely closed and has a lot of information way ahead of me... 

 

http://www.drugawareness.org/

http://antidepressantwithdrawal.info/en/introduction.html

 

The thing that I wonder if where are all the other people who healed why are they not doing more... or are they behind the scenes I am curious. 

peace

[JanCarol]

Hey Mort - honestly?  I think your anger and revenge fantasies are quite healthy, and are showing me how far you have come since you started posting here!

 

You sound more like a hockey player and less like someone who was stepped on by an elephant!

 

I have undiagnosed myself in my mind - but find it convenient to leave the "bipolar 2" diagnosis in the files.  On the one hand, it makes it difficult for doctors to take me seriously (after all, bipolar 2 is just crazy, right?).  On the other hand - it gives me the power to refuse drugs, which I cherish.  "OH NO, DOC, I CAN"T TAKE THAT ONE, BIPOLAR 2, YOU KNOW!"

 

The disability thing is a rough one.  I've been partially disabled since 1995.  In the US I fell through the cracks because when I did work, I was doing "high level" work - accounting.  For $15 an hour, instead of the $5/hour at McDonalds.  So because I could work 10-20 hours a week, at that level of pay, I obviously wasn't disabled, even though I collapsed and shut down sometimes for 3 days in between jobs.

 

When I moved to Australia, the disability thing was a "start over" proposition.  My p-doc wanted me to fail at a few jobs first before she would sign a paper for disablement.  Since I sleep at odd hours, there isn't a single job I could land here.  Australia is a daytime country - in the US I found jobs that I could work late afternoon - evenings.  So - lacking the desire to get a job for the purpose of failing it so I could get disability - nothing.  Lucky for me, hubby had budgeted for me to not have a job, and we get by.

 

I cannot imagine going through withdrawal in the US, while having to keep a roof over my head, keep a car running (without a car, not possible to work), feed myself, keep the electricity and heat on - just not possible.

 

THAT said, my taper was so slow and gentle (2.5 years total tapering) that I didn't really go into withdrawal symptoms.  I'm a poster girl for the slow taper with lots of holds.

 

So - I just re-read your thread, and it sounds like you're doing heaps better, even though you're still getting knocked around.  Can you update your signature to put in the years you tapered off?  Did you go back on the PPI?  What dose are you on, if that is the case, and when did you reinstate it?  Please let us know in the sig.

 

Just last month you were talking about the histamine diet:

 

I have kept a food diary so I'm a bit perplexed. Ive tried to eat very high histamine foods when my gut was bad to see if it made it worse. But it didn't. I think when I get into a wave my gut just flares up being a sensitive point for me. 

 

Well, that's the weird thing about the histamine diet - we need histamines to live.  So it's a LOW histamine diet.  And you kinda did it backwards.

 

Think of it as a bucket.  You have a limited bucket for histamines, if you fill the bucket up, it spills over into symptoms.  Eating high histamine foods while your bucket is spilling over, will not tell you anything.  The only way you will know if a low histamine diet works, is to eat LOW histamine for a period of time, trying to keep that bucket from filling up.  If this works (it should take about a month to know) then you know that histamine is your issue - and while you are keeping your histamine low, you will notice which foods "fill the bucket up" faster than others for you.  Because - like with anything - different people are sensitive in different ways.

 

I got the bucket imagery from The Histamine Chef (who I found from GiaK's BeyondMeds website)

 

You also wrote:

 

I am trying to spend a little less time on the site just to try and get away from this experience. Sometimes I find myself getting a bit too obsessive about the whole thing. 

 

I hear you.  There comes a time when you meet up with an old friend, and they ask you, "how you been, what have you been up to?" and all you can think about is withdrawal.  drug companies.  psychiatrists. doctors.  symptoms.  egads.  So you smile and say, "not much, you?" and hope they have a story to fill the void because they would never, in a million years, understand it, unless they had a few spare hours to listen to the whole story.

 

I often just say "Chronic fatigue" because people understand that.  Is that an avenue you can approach for disability?  

 

Here's the other difficult thing.  If you file for disability, but refuse the drugs, then you must not be very disabled, right?  At least, that's how they think.  Being an "unmedicated bipolar" means that I'm "non-compliant with treatment" and that can disqualify me for programs, especially in the US, and maybe here in Australia, too.  Treatment orders (forced treatment) is not uncommon here, and there's a lot of it in the states - where treatment is a precondition to receiving your disability.....and Tai chi just doesn't count towards that!

 

I hope you get the hockey sticks out again soon - it felt so good to hear you just playing around on the driveway - it's a start.

 

So here's a hockey question.  When I came to Australia, it was the first time I'd seen "field hockey," not ice hockey or skate hockey.  They do it on foot, running.  I'm like, where's the thrill in that?  You skate, right?  I mean, that's the Canadian way, eh?

 

I miss my skates - I never played hockey, nor was I a good skater - but skating and skiing were a very free activity.  I saw a kid at the mall the other day with those little rollers in the heels of her shoes, and watching her glide around the mall was so delightful - I was jealous (but also would be afraid I'd land on my arse!) but I don't think they make those shoes-with-wheels-in-heels for adults.  

 

I hope you see the sun today!

[Christian]

Hey Mort,

You doing OK? Have heard from you in awhile.

[Mort81]

Jan Carol thanks for the comment! I haven't checked my thread in ages so I apologize for not responding. Yes that histamine response makes tons of sense! Histamine had been good lately as well as stomach thankfully!

Also I feel the same way when talking to old friends even through text. I tend to say I have complicated health problems and don't want to talk to much about it. Usually shuts then up. Because the real story doesn't fly. I also have had tremendous trouble with disability. I'm diagnosed with akathisia from ssri and some other things but my insurance keeps pushing me to see their doctors. So they cancelled me.

And Ya the hockey here is ice!! I played usually once or twice a week in men's leagues, very fun would all have beers and food watch some sports at the bar in the arena. But haven't done that since WD

I came on my thread to ask some support fro one of the mods. I'm a bit confused right now. I'm in a 3 month wave that is far more debilitating than any wave in the previous 28 months. Its tremendous head pressure, dizzyness, light and noise sensitivities all rolled in one. I haven't made my meals in 3 months or driven or tv. Its feels like someone took a crowbar to my head. The same way I described my stomach early in WD is how my head feels now. I had something less but similar after a massage 1. 5 year ago but it abitated after 1 month. ..

My question because I'm so confused after stopping by the Benzo Buddies forum is that they tend to say ssri withdrawal is far less significant than Benzo WD. So all my problems must be from that. Now I'll update my thread but I've been on 0.10mg of clonazapam for a while now probably over a year now. .

 

Now about 1 month ago, so 2 months into this wave I tried updose to 0.125 for 1 week because this wave has been so brutal and I thought it could help. It made 0 difference. So after that week I waited a week and went back to 0. 10 than I tried going down to 0.07. I made a liquid by the way . And again no difference either way. Do I just have to stop this drug?? Is it like an ssri when it poops out?

I'm back at 0.10 again. But anxiety isn't a huge symptom now. But do I have a Benzo tolerance problem like the other site suggests or is this still the Lexapro? And is this normal!? To have a more debilitating wave this far out. I was doing very bad before but able to grocery shop, weekly markets, movies, short walks, TV etc.. Now I'm cooked like a thanksgiving turkey!

Before this wave so early September I definitely saw my best windows, I had a few days of much better not full days but most of the day. Than I go smack into this tire fire of a wave.

[Mort81]

Thanks for the help guys I need some peace of mind this has been pretty bad. I'll respond tomorrow as texting is extremely difficult In this wave. Head symptoms have been really low on the list except for the rough massage over 1 year ago that I could directly pinpoint waAnyway I'm typing on phone and ver he problem. Just to clarify a few more things, I have been cutting the 0.5mg pill in 4. Than shaving a small corner with a precisionkknife. I measure and its very accurate. And I've been doing that for over 1 year. I made the liquid to go to 0.07. Which didn't alleviate symptoms either so as of a few weeks I'm back to 0.10mg pill.

 

Also I am back to 30mg dexilant., I never got off, I got down to 20mg but rebound acid hits too hard and akathisia episodes started so I backed off. I've been back at this dose for roughly 6 months. I feel I need to be stronger to cut it out. It triggers bad WD symptoms . Anyway I'm typing on phone and too dizzy thanks again

 

Mort

[scallywag]

Lexapro is a very potent SSRI. It's possible that your symptoms result from the fast taper off in August 2016, going from 20 mg to 0 mg in 5 weeks. (Aside: your doctor should be forced on a march of similar risk to his/her well-being.) Many people on this board are dealing with symptoms from bad discontinuation of Lexapro.

 

I'm told the folks at Benzo Buddies are not knowledgeable about SSRI discontinuation or withdrawal. They do good work with benzo withdrawal ... annnnd I'd take their opinions about anti-depressants with a HANDFUL of salt.

 

Do you have a post in the Members-only benzo forum?

 

Would you please update your signature to show your Dexilant scrip and dose?

[Mort81]

Ya i thought it did update, yesterday I filled it out 20-30mg of dexilant for the last 2+ yrs. I did the rapid taper in August 2015. And my doctor should be harmed himself but even 1 more month or two probably wouldn't have lessened the blow. As we know I probably would have needed years to come off this poison properly. Ive been in the members forum for Benzos but I noticed wellness stepped down so I posted here.

[AliG]

Mort. Wellness did step down but our lovely Shep has taken the reigns. She will look after you in a fantastic way .

 

I was wondering if you wanted to change your " title" as you are not a " new member " anymore.  Just a thought .Let us know what you think .

What would you change it to ? 

[Mort81]

Sorry made a typo, I've been off lexapro since August 2014. So 29 months. And now my worst wave

[AliG]

That's ok . I've been 32 months and my worst wave. Happy days .    We're all in this together. 

[Mort81]

Hey AliG thanks! I'll go ask Shep her thoughts, so I guess it's normal to feel worse this far out! Wow this process sucks. I haven't had too many windows in the 29 months, it's been mostly awful. Hoping this is the last big one or push to healthy. I have a brutal cold on top of this so it's extra fun now! But we are in this together, I get a bit down that I feel people are in a better place this far out. But I guess I don't know foresure. At any point it can let up. I'm not looking for 100% just a solid edge off this lousy WD.

 

 

So In front of my name it says new member? What are some things people have? Old member?

[Mort81]

Oh ya u see what u mean now with new member. How about Mort81 and forging ahead. Or pushing through, something like that. Or grit grinding... Moving forward... Etc.. Any of those is good

[Mort81]

Is trying to push through too many words?

[monami]

I am Sorry you are suffering , there is a post in this website with this topic : " Lundeliz: I

 

 

think i am in trouble ,clueless about benzos " . She was on kloponin like you and the

 

 

 

symptoms after 30 months are similar you . It may help. Best wishes .

[Mort81]

Thanks monami! I'll give it a look