26 replies to this topic

[BelaLugosisDad]

I have been away for a while as I have been having lots of tests. Over $1M of tests. Let's join the dots.

As some of you know I hold an ATPL (bar the medical at moment). A considerable amount of money has been spent on training me to fly 380 people across the world complaining about their food.

I stopped Cymbalta on the 5th of February, it should not have been given to me. Neuroleptics ground pilots.

Symptomaticaly I have a constant migraine and what the neurologist calls Cluster headaches. These kick off 15 minutes after I wake up and peak at 2pm & 8pm 24/7 every day for the past for months. My eyes also hurt, god do my eyes hurt.

I have done lots of research and not found many people with this duration of headaches, but they started the day I quit Cymbalta cold turkey.

Some freaky test results (bear in mind I have had to pass the most stringent medicals all my working career)

Oscillating blood pressure. From high to low, no pattern.
My right eye has turned from green to blue.
Blood coagulation is not happening properly (I understand serotonin regulates this)
Lumbar protein proteins through the roof but no other signs of viral or bacterial infection.
Vascular Contrast MRI has shown a significantly extended and "un curved" artery in the left hand side of my brain.

And all this is new since I quit Cymbalta.

I respond only to painkillers with some serotogenic method of action (morphine does nothing) - Paracetamol, tramadol (which I refuse), pethadrin, and by chance an antihistamine with SNRI properties that I discovered by chance when I had mosquito bites all help some what.

Triptans, lyrica, etcetera do nothing.

To me this paints a pattern, but to the countless extremely highly paid doctors it cannot be Cymbalta - withdrawal doesn't last this long and is very mild.

Does anyone else have experience of these headaches and how long they last? I am suicidal put simply, I cannot endure this level of pain day in, day out.

Love to you all,

Adam

[Clara]

Oh Adam, no I haven't had those types of problems. Maybe someone on the forum can identify with this and help you. Please, please see a psychologist to get some help with these suicidal thoughts, please. You are intelligent, and your talents and abilities are much needed in this world. You'll get it all cleared up and be better! It's just finding the right help. God bless. I am sure others will be offering their support soon. All my best to you. Please keep us up to date!  Prayers for your healing!!!!!   clara

[fishinghat]

You are not alone Adam. I have read this same type of story many times on here. I beleive it was FiveNotions who also suffers from headaches since coming off. I would say definitely withdrawal related.

[FiveNotions]

Adam, first, I did not know you are a pilot and hold an ATPL.....if I missed that in your earlier post, I apologize...deeply apologize....because that's a key part of who you are....your personal and professional self...and ....well, let's just say, now that I realize this, I also understand a whole additional dimension to what you're feeling and struggling with.....my ex-husband is a pilot...(I gather he's retired now, due to age) but once a pilot, always a pilot....he was a US Coast Guard SAR pilot for over twenty years, retired out of the military and was qualified to fly jets...corporate...I can't remember the specific designation now, but you'll know what I mean....one icy wintry day he was bringing his plane load of corp execs in for a landing....runway not well prepped...he saved the plane and the passengers, but had to take a controlled skid off the runway.....all he got in thanks was an FAA investigation and a year of agony until he was cleared to fly again.....suicidal...yes, he was suicidal.....

Ok, now back to your cymbalta withdrawal issues. ....remember, I went cold turkey like you.....gave me optic neuritis....I cannot begin to describe the pain....it lasted for about three weeks.....didn't hit me immediately or stay with me like your cluster headaches....but yes, cymbalta withdrawal....the sharp depletion in serotonin, is in all likelihood the cause....

I'll find my post and research links and put them here...

Also, I've known people who have cluster headaches...all men, one of them a US Navy fighter pilot who was a friend of mine in law school....(yep, I like pilots....you guys have an attitude towards life and living it that's unique and great to be around....never give up, do you?!).....anyway, I believe that men get them much more than women....the agony is far worse than the optic neuritis I had.....still have but so faded it's not worth mentioning....I've been told the pain is enuf to make one think suicidal.....

So, bottom line, all of what you list as symptoms strike me as likely directly connected to serotonin depletion....except, I've never heard or read about a change in eye color....that's a new one....

I'm going to start researching this for you...esp.the cluster headaches....

Also, there's a US law firm, Knox Ricksen,that xman found out about....they're a huge power house in high level drug and med device malpractice cases...they've taken on cymbalta withdrawal syndrome as a personal vendetta...because the wife of one of their partners had it...and they saw first hand how she suffered and was ignored and denied by her docs etc....

I'm going to call they fellow on the cymbalta team with whom I spoke last week (they've accepted me as a client and others of us here are contacting them as well)....I'm going to ask him if any of their cases and/or research involves issues such as yours....and if their representation extends to victims outside the US.....

I'll start a new topic/thread for you with anything and everything I can find out....including research articles, etc.....

Don't let this bastard get you down and keep you down....keep fighting, keep getting up every time you get knocked down...and if you can't get back up, as my Navy pilot friend used to say, take a bite out of their balls while your down there..... ;-)

[BelaLugosisDad]

Thanks all for the replies. I am in full headache time at moment.

One small point, there has always been a romanticism about doctors and pilots. It stems I believe from the fact you are trusting us with your lives in situations where you have no control whatsoever.

I made the point to one of my Drs who was pontificating to me about how doctors do not make mistakes.

I called bullshit and pointed out that if I make a mistake it hits the front pages of every news paper of the world where as if she makes a mistake an entry is made in the obituary column and a statistic is entered in the hospital records.

I am developing a healthy dislike of doctors. When there is something they can't figure out they call it 'atypical' and go home.

[FiveNotions]

At least you pilots have to go for sim training at regular intervals....and you check your own planes for flight safety and mechanical issues...and you have co-pilots, and you have that loooong pre-flight checklist,the name of which I forget.....I've never met a pilot who thought he/she was infallible.....

Docs, on the other hand....they fly solo, and God ain't their co-pilot.....they are God, in their own little minds....

[fishinghat]

Can we throw lawyers and judge into this dicussion?

[FiveNotions]

Hell yeah, FH! Way back when I tried to be a lawyer, I had to put up with dozens of "Gods" ;in their minds only) on a daily basis.....I was a total failure cuz I just couldn't see myself as a "god"...and I refused to worship at all their little alters....

And ain't it totally ironic...here on this forum I've somehow ended up labeled as "God-like" ..... hahahahahahahaha

[ShadyLady]

Just a thought...Don't doctors PRACTICE medicine whereas, pilots don't practice flying?! Just a thought from this sick, little puppy;)

Prayers extended to you, Adam, I have never had any issues with cluster headaches.

[Wagtail]

Adam , must a thought but well worth a try . I've heard good reports from acupuncture & Chinese medicine for bad headaches .
Hang in there my friend relief is just around the corner . Do heat packs or cold packs give you relief , I've even heard that cutting a lime in half & ribbing it on the area of Paine can help . Natural remedies but I think anything is worth trying ...
Try the acupuncture ... We're all hurting with you my friend .
You can do this !!!...

[FiveNotions]

Adam, here's some info on cluster headaches...in general, and the serotonin connection.....we need Fishinghat to help here....the hypothalamus is involved....

I also saw some passing mentions of antihistamines being effective treatments in some CH cases.....also, various meds in the tryptans category.....I'll see if I can get something readable on those points.....

---------
http://umm.edu/healt...adaches-cluster
Evidence strongly suggests that abnormalities in the hypothalamus, a complex structure located deep in the brain, play a major role in cluster headaches. Advanced imaging techniques have shown that a specific area in the hypothalamus is activated during a cluster headache attack.
The hypothalamus is involved in the regulation of many important chemicals and nerve pathways, including:
Nerve clusters that regulate the body's biologic rhythms (its circadian rhythms)
Serotonin and norepinephrine. These are neurotransmitters (chemical messengers in the brain) that are involved with well-being and appetite.
Cortisol (stress hormones)
Melatonin (a hormone related to the body's response to light and dark)
Beta-endorphins (substances that modulate pain)

By some not completely understood mechanism, the trigeminal nerve is also involved. The trigeminal nerve carries sensations from the face to the brain.
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http://www.clusterhe....html#Serotonin (You might want to look at this site, devoted to cluster headaches, like this forum is to cymbalta withdrawal.)

Serotonin alterations are more subtle in patients with cluster headache than in migraine. Medina et al (1979) found modest elevations of serotonin in whole blood during attacks of cluster headache, whereas platelet serotonin levels fall precipitously during migraine attacks. Waldenlind et al, (1985) found low whole blood serotonin levels among cluster patients both during an active bout and during remissions, comparable to levels found among migraine patients.
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http://www.nytimes.c...s/overview.html (Excellent article, includes list of treatments....check to see if you've tried all of them....)

Cluster headaches are a fairly common form of chronic, repeated headaches. They are four times more common in men than women. The headaches can occur at any age but are most common in adolescence and middle age. They tend to run in families, passed down through genes.
Scientists do not know exactly what causes cluster headaches, but they appear to be related to the body's sudden release of histamine or serotonin. A problem in a small area at the base of the brain called the hypothalamus may be involved.
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Cluster headaches: Association with anxiety disorders and memory deficits
http://www.neurology.../53/3/543.short
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Cognitive Declines During Migraine and Cluster Headaches Are Caused by Cerebral 5HT Neurotransmitter Dysfunction
http://link.springer...1-4419-1364-7_7
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Serotonergic Agents in the Management of Cluster Headache
http://link.springer...1916-011-0176-4
Cluster headache is a highly disabling primary headache disorder, characterized by unilateral headache attacks occurring in association with cranial autonomic symptoms. Serotonergic agents, such as the ergot alkaloids, have traditionally been used for the acute and preventive treatment of cluster headache and other primary headaches. Although it initially was thought that their efficacy was due solely to the vasoconstriction of extracranial cerebral vessels, new mechanisms of action of these drugs have been ascertained as a consequence of advances in elucidation of the pathogenesis of primary headaches and the development of triptans. This article reviews the current knowledge about serotonergic agonists and antagonists used in the management of cluster headache, focusing on their mechanisms of action and on the possible role of serotonin system dysfunction in this complex disorder.
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[FiveNotions]

Adam, here are links to the discussions I started about eye problems, optic neuritis etc and serotonin....ignore the "Gello" reference....I was on the right track, but what I really ended up meaning was "glycine".....which I still take, along with lots of omega 3.....

https://www.cymbalta...ated +serotonin

https://www.cymbalta...optic +neuritis

[thismoment]

Adam

Interesting to read about your headaches. My tension-type headache started upon beginning my withdrawal 2 years ago this month. After 42 days of tapering off, the headache was still there. Coming up to 23 months Cymbalta-free and the headache is still there. I hold an ATPL as well. Coincidence?

[BelaLugosisDad]

I need to get to a computer to answer you all as on an iPhone there is too much to type with these little buttons.

Thismoment, quick question: I am assuming you had clear class 1 medicals until you touched this crap. The reason I ask is I was a 747-400 senior captain for region Asia Pac for a tier 1 airline until this all started and our CP & HR are putting a hell of a lot of pressure on the insurance company for answers. The airline have invested a lot of money in me and are close to passing this to legal.

Might me interesting for us to have a private chat.

[BelaLugosisDad]

Thismoment: interestingly the eye that has changed colour and hurts the most is my right which I can use independently to scan the six (I am ex military)

FN: a wealth of information, I cannot do you just iv at the moment, but will get back to you. xxxx

[FiveNotions]

Ah, "scan the six"...... :-D

Wish I could still fly jump seat....I'd head over to read those articles to you....sincerely doubt reading is one of your current favorite activities.... :-@

[BelaLugosisDad]

FN, when I am back in the air (which WILL happen) you can read them from me from the observer seat, when I can pry you out of you 'suite' in our first class cabin.

[FiveNotions]

Funny, I'd take jump seat/observer seat any day over first class..... My ex even got permission for me to sit in on a couple of his sim trainings.....i don't have any of what it takes to do what you guys do.... Guaranteed I'd not only screw the pooch, I'd screw the whole damn kennel.....

but it is one heck of a fascinating learning experience to see what you do and how you do it..... ;-)

[BelaLugosisDad]

On final with altitude call out on the go.

LAX approach: Speedbird (removed) clear 25L visual
Me looking at copilot (who already is pulling out Flight computer): This will be an uncomfortable jerk to the left.
LAX approach: Speedbird (removed) 25R IFR clear.

Me: Yes I was wondering.

Retard. Retard.

Ladies and gentlemen welcome to Los Angeles International Airport where the temperature is...

All in days work.

[FiveNotions]

Love it! Ah, talk pilot to me....heheh

[BelaLugosisDad]

Retard is a computerised cockpit callout btw, not a comment of mine!

[FiveNotions]

Heheh, I knew that....but it works in the other context, too!

Glad to see/hear that your sense of humor is fully functional! You're gonna get through this.... :-)

[thismoment]

Hi Adam

 

I sent you a PM; don't want to talk shop here.

[FiveNotions]

Adam, the site I've linked below, "Clusterheads," is just wonderful.....I've been doing more research on CH, and I keep running across discussions from their archives....there are airline pilots, air traffic controllers, long haul drivers, cops....you name it...all guys with CH....the substantive info they share on meds, remedies, alternative treatments and the underlying physiology of CH is excellent...their descriptions of what these things feel like makes me hurt just to read them.....and their humor in dealing with these things had me laughing out loud....

http://www.clusterhe...ewvisitors.html

[Wagtail]

Adam, just read this and thought of you ...I don't know if it works or not but you've got nothing to lose by trying it .

It's an " old wives remedy " MIX ONE TEASPOON OF BICARBONATE SODA ( baking soda ) in a glass of water & drink it . It's suppose to stop bad headaches for @ least two hours .. Can be repeated up to 7 times a day if necessary ..

I pray for your sake that it DOES work ..

[tria]

Adam - I am so sorry for what you're going thru!!  My headaches began WAY before the Cymbalta but I can give you some info on the meds I've used.  I've had migraines since I was 20 (will be 44 soon).  The headaches became chronic in 1997, worsening over the years.  I'd wake up several days a week sick to my stomach and unable to function.  I've also developed neuralgia in the left side of my face - my headache is always in my left temple so docs don't know if it's related, or if it may possibly be an "atypical presentation" of a cluster headache.  None of the migraine drugs worked for me (imitrex, etc).  I tried other anti-depressants as well with zero results.  I do remember a drug called DHE which was a nasal spray.  I used it for migraines as an abortive treatment with some relief but am not sure it it's used for cluster headaches.  Prednisone is used to treat cluster headaches, but I think that is used mainly as an abortive treatment as well.  As far as preventative treatments, some blood pressure meds may help, especially calcium channel blockers like verapamil or beta blockers like propranolol or atenolol. Other meds I've tried are midrin, Neurontin, periactin, indomethacin.  I've tried calcium citrate and magnesium but neither helped the headaches.  The herb Feverfew was given to me by a doctor but I was allergic to it.

 

What has helped me - I do take tramadol and it works to some extent.  My headache pain is never gone, just a matter of how severe it is.  I also take Phrenilin (which is like Fioricet but without the caffeine).  I take a B50 Complex (Twinlab makes a good one), high-dose B2 (400mg), and 1000mcg of B12.  My B vitamins don't cure my headaches but the headaches do get worse if I stop them.  I also take clonidine for the facial neuralgia.  That pain was excruciating and nothing touched it until the clonidine.  Intranasal lidocaine is another choice. This has helped my atypical facial pain. It comes in a glass bottle and they tell you to put it in a spray bottle, but I found using a q-tip was easier.  I could sometimes find just the right spot and it would really numb thru my cheek and behind my eye.  Toradol works pretty well on my headache but, unfortunately, it's really supposed to be given by IV or injection first then followed with pills for a very short time (they are murder on the stomach).  My doc told me I can take just the pills once in a while (a few per month), but I reserve it for the worst of the worst.  My stomach couldn't tolerate it if I took more often anyway.  For the migraines, I get botox injections every 2-3 months.  This has helped tremendously. I get most of my injections in my neck and a few in my scalp, which I guess is odd. When I started getting them, I got more in the forehead, and by my eyes and eyebrows which I guess is more "standard."  But over the years, we experimented with different spots and have found what works best.  The botox completely got rid of the sick-to-my-stomach migraines which were the worst.  I still have chronic headaches and get migraines occasionally but they are nothing compared to what they were before the botox.  Chiropractic treatment has also helped to some degree.

 

In relation to the Cymbalta, when I began weaning off, my headaches got much much worse. In addition to the chronic headache and facial neuralgia, I have an almost constant pounding headache in my temple. I've endured a lot of headache pain in my life, and these withdrawal headaches are BAD.  I'm 99.9% sure the worsening headaches are from withdrawal.  I was dropping my dose too fast, and I've been at a stable dose for a couple weeks now and the pounding headaches have thankfully let up a bit for now.

 

Gosh it's 1am!  If I think of anything else that might be of help to you, I'll post again.  If you have any headache or med questions, I'll be glad to try to help.  I know the pain you're in, hang in there!  If I can be of any help, just ask!

[BelaLugosisDad]

Dear All, thanks so much. I am reading everything - just can't type.