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Began The Journey Two Days Ago.


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#1 Justoffcymbandwellb

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Posted 15 March 2016 - 05:32 PM

By accident my primary care was on vacation and my refills for Cymbalta 60mg and Wellbutrin XL 300mg where up.  The back-up doctor has a policy of not renewing refills.

 

So there I was two days ago with no meds and the pharmacy refusing to supply any.  Something niggled in the back of my mind about not stopping this stuff suddenly.

 

What I have read over the past two days has both shocked and horrified me as no one ever indicated there was any possibility of a withdrawal from these.  I normally am very medical (EMT - 14 years) so never take anything at face value.  The fact that none of the items (serotonin, dopamine, neuroepinephrine, ...) that these drugs are meant to affect is even measurable has always bothered me.  Feeling weak?  Take blood glucose..  56?  Take glucose feel better.

 

I am 49 and was started on these about a year ago, just after I had suffered a brain injury.  I was started on 30mg Cymbalta and when I said I felt nothing and there were no side effects, my Doctor upped it to 60mg.  Still no side effects nor did I feel any better or different, so all is well, right?  Then he decided to add Wellbutrin XL 150mg, and same story, no ill effects and no noticeable positive ones, so why not make it 300mg?

So here we are today.  I read with horror the withdrawal symptoms and the length of the withdrawal, but it really doesn't bother me at this stage.  All of the symptoms I have anyway from my brain injury from a year ago (dizziness, insomnia, trouble sleeping, brain fog, cannot read anything more than a couple of sentences, do not have any depth perception or pro-preception of my limbs when I am not looking at them directly, diplopia, nystagmus, etc), so how could withdrawal be any worse I ask myself?   I guess I am about to find out.  To make matters even more fun, no one bothered to check my pituitary function since the brain injury until a couple of months ago and it turns out my hypothalamus isn't telling my pituitary glad to release anything... (saving it for something)?  So I produce no ACTH, therefore no cortisol, no testosterone, and therefore no LH or FSH.  On the morning tests, my testosterone was 9.2 on a scale of 300-890.  On the same test my cortisol, ACTH, FSH, and LH were all <1 (ACTH <5 - lowest possible reading).  My endo does not know how I was even alive or functioning at all.  So they put me on hydrocortisone replacement and testosterone replacement therapy - for life.

 

This is day two and I only notice a splitting headache going up the left side of my head which Advil doesn't even get a sniff at.  Apart from that, business as usual.

 

Wish me luck.

 


#2 fishinghat

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Posted 15 March 2016 - 06:39 PM

interesting story justofcym.....

 

Cymbalta can cause a failure of the htp axis and a complete shutdown of testosterone production. Once off the Cymbalta it can cause a condition called Post SSRI Sexual Dysfunction (PSSD). A loss of all or most sexual function and sensation.

I know because I am one of many who have developed this condition  It can also cause elevated TSH (something you might check out). It sounds like you have a good handle on your current condition and I am sure you know it will take a while to straighten things out.

 

With your brain injury do you feel like it will be imperative that you go back on these meds?


#3 Justoffcymbandwellb

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Posted 15 March 2016 - 08:37 PM

No, they never did anything for me, was just going with what the good doctor said.  No one can say when the hypopituitarism started as no tests were done and there was too much going on to run random tests on hormones.  Only a change in PCP a few months ago caused them to run the labs.

 

As you say, it is a long road with many adjustments along the way to get to some sort of homeostasis.  I don't know if the Cymbalta caused the low-t but I can guarantee you that I wasn't missing sex because of the low t, but now that it's back in the high normal range, I feel like 17 again!  My wife is not happy about the development.  My endso says the hypopituitarism is for life, but there's a ray of hope that getting off the Cymbalta will cause us to reconsider and get the original equipment working again.

 

Tough to isolate with so many moving parts.  The fact that there is no ACTH, testosterone or cortisol points to the hypothalamus being damaged as all MRI's show no adenomas on the pit.   The testosterone therapy shuts down your body's own LH and FSH production, so it will be worth revisiting when off this crap.  Day 3 approaches.  Still haven't told my psych that I'm quitting cold turkey.  He'd probably freak out.  The original brain damage was encelopathy the that had multiple lesions.


#4 fishinghat

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Posted 16 March 2016 - 08:10 AM

The PSSD usually corrects itself or moderates when you are off Cymbalta for 2 or 3 months.

 

Good luck and keep us informed.  God Bless


#5 Justoffcymbandwellb

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Posted 18 March 2016 - 12:03 AM

Day 5, no side effects.  I counted the 60mg Plasco pill.  381 beads, but, they really aren't close to all being the same size.  I sure hope I don't end up bead counting.

 

Slight headache, again, left side, pretty mild.  Fever of 100.4 so have to 3x Hydrocortisone.  Spoke with my endocrinologist and she's on board with relooking at everything once off the crapbalta.  Never heard of any possible HPA axis interference or withdrawl symptoms.  But then she is an endo...  My rheumatologist is quite happy to prescribe prednisone for gout attacks but doesn't have the first clue as to how it interacts with a hydrocortisone therapy regime.

 

Why are doctors so god damn insular?  They are like rats running through a maze that only know how to get to the cheese one way.  Never even think to lift their snouts over the wall and go, "Hey there's an easier way to get to the cheese!"  I have know so many people like that my entire life.  I think we erroneously expect doctors to be smarter as we put our lives in their hands and they 'inherit' an undeserved level of trust that comes with the M.D. piece of toilet paper (might as well be written on that instead of vellum).

 

At least two pharmacists I've spoken to have NEVER heard of Cymbalta withdrawl.  I said there was free public internet at the library if they couldn't afford to have it at home.

 

In the back of my head, I am thinking that since I never really noticed ANY real effects from the Cymbalta or the Wellbutrin that my very delicate chemical infrastructure doesn't give a crap when they're not there anyway.  Again, fingers cross and time will tell.


#6 Justoffcymbandwellb

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Posted 31 March 2016 - 10:05 PM

Day 18, cold turkey off 60 mg.  I can only guess that Cymbalta never had any effect on me, therefore t has no withdrawl or side effects.  Thanks for listening.  If I can help, let me know, I feel for everyone still going through withdrawl and I cannot even begin to explain why I had none.

 

I suffered a brain injury a year ago, a thiamine deficient encephalopathy, which has since also caused secondary adrenal insufficiency from damage to my hypothalamus.

 

My case is almost entirely unique, so not sure if my experience can help others, but feel free to ask questions and I'll do my best to help.





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