tricyclics/TCA:POLL for all CFS/ME suffers who was diagnosed with POTS,NMH or form of dysautonomia

[Tired of being sick]

I'd all so appreciate after your POLL participation, I would like you to POST what form of Dysautonomia you have and what TCA and dose your are on.

Thank You..

My vote>*Yes: AMITRIPTYLINE before my diagnosis
Max Dose of 150mg

 

[Sushi]

NMH--no tricyclics. As I remember they are not recommended for dysautonomia patients.

Sushi

 

[ukxmrv]

POTS - no antidepressants.

Amitripilyne which was prescribed for pain and sleep didn't help me with either - plus the side effects totally wiped me out and got worse over time.

 

[*GG*]

I take Remeron for sleep and Cymbalta for pain, not sure what class those fall in?

GG

 

[OverTheHills]

POTS no antidepressants. Tried several at low doses in an effort to help with sleep. Bad side effects.
OTH

 

[Tired of being sick]

I take Remeron for sleep and Cymbalta for pain, not sure what class those fall in?

GG

Cymbalta is not a Tricyclic,however it is a selective serotonin and norepinephrine reuptake inhibitors (SNRIs).

The norepinephrine in cybalta can make POTS much worse since POTS patients norepinephrine levels are high when triggered by simple posture changes,especially when
on your feet for lengths of time..

"Patients with POTS demonstrate a heart rate increase of ≥30 bpm with prolonged standing (5-30 minutes), often have high levels of upright plasma norepinephrine (reflecting sympathetic nervous system activation),
The Postural Tachycardia Syndrome (POTS): Pathophysiology"

Remeron is a tetracyclic similar to triyclics which could possibly irritate POTS as well...

"BRAND NAME: Remeron, Soltab. DRUG CLASS AND MECHANISM: Mirtazapine is a tetracyclic antidepressant similar to maprotiline (Ludiomil) and tricyclic antidepressants, for example, desipramine (Norpramin). Depression is an all-pervasive sense of sadness and gloom."

 

[Tired of being sick]

I'm finding out pretty quickly that psychiatric chemical balancing "unbalancing" mind altering drugs..

Are a no no..

Which hopefully one day will prove that CFS/ME and all the baggage of other serious conditions that comes with it,
Will prove that CFS/ME it is not in our HEADS!!

I
Since our CNS is already fubar with overreacting chemicals..

Messing with them makes things worse,hence that is why we are soooooo chemically sensitive..

Huh?


Blood labs need to be drawn while we are active or when symptoms are through the roof..

I'm willing to wager the kitchen sink on this that the blood will have a lot more answers we are looking for
using this method of "madness",Lol.......

Kind of like chasing the rabbit out of the thicket.....,Lol.......No?



Or
Is this just my adrenals overreacting with false hope creating excitement?

 

[Valentijn]

I tried amitriptyline for 2 days soon after being diagnosed. It made my physical symptoms much worse.

 

[Sushi]

On the other hand, some of us with non-POTS OI do well on Strattera, which is a norepinephrine re-uptake inhibitor. For me, it was magic--no OI at all while the dose was in effect. But, it didn't treat the cause so I eventually stopped taking it and worked on causes.

Sushi

 

[Valentijn]

On the other hand, some of us with non-POTS OI do well on Strattera, which is a norepinephrine re-uptake inhibitor. For me, it was magic--no OI at all while the dose was in effect. But, it didn't treat the cause so I eventually stopped taking it and worked on causes.

I'm one of those who did very well on Strattera. Eventually I switched to Yohimbe, since it's vastly cheaper and a bit more effective in dealing with additional symptoms.

 

[Tired of being sick]

On the other hand, some of us with non-POTS OI do well on Strattera, which is a norepinephrine re-uptake inhibitor. For me, it was magic--no OI at all while the dose was in effect. But, it didn't treat the cause so I eventually stopped taking it and worked on causes.

Sushi

Yes sushi it was magic because your norepinephrine levels are low to begin with which is why you have
NMH

The cause of everything in all of is LOW BLOOD VOLUME no matter what Dysautonomia we might have..

I am absolutely convinced without a single reasonable doubt.........

The only difference between all of our Dysautonomia conditions but same symptoms is how our individual body's react to our LOW BLOOD VOLUME problems.......

My body creates excessive norepinephrine levels, hence the hyperadrenergic form of POTS this is why the medicine that helps you will destroy me..

However when my adrenergic system crashes(stops producing norepinephrine)
This is when my POTS turns into the Nuearally mediated form..

This is why no meds have a prayer in Hell of helping me

 

[Tired of being sick]

Quit the Amitriptyline cold turkey..

It has been absolutely pure horror, comparable to one on one with Satan himself the last few days/nights/24/7....

Amitriptyline was the only drug on Earth that could put me to sleep for any length of time...

 

[CFS_for_19_years]

Quit the Amitriptyline cold turkey..

It has been absolutely pure horror, comparable to one on one with Satan himself the last few days/nights/24/7....

Amitriptyline was the only drug on Earth that could put me to sleep for any length of time...

Antidepressant withdrawal has been much worse for me than narcotic withdrawal. Just curious, did you stop the amitryptyline due to POTS/NMH/dysautonomia? You'd definitely have an easier time of it if you did a gradual withdrawal. It's best to get your doc's advice on how to do this, but if you want I can find an article I just posted here a few days ago that had input from medical people, not armchair wannabe docs. Just let me know and I'll look for it.

BTW I just started taking doxylamine, an OTC antihistamine for sleep and it worked well for me last night and made me sleepy, better then melatonin, but it won't do a thing for pain like a TCA would.

 

[Tired of being sick]

amitryptyline due to POTS/NMH/dysautonomia?

Yes sir.....

BTW I just started taking doxylamine, an OTC antihistamine for sleep and it worked well for me last night and made me sleepy, better then melatonin, but it won't do a thing for pain like a TCA would.

I might give doxylamine a shot...
Maybe you could save me the trip.
I will let you know that nothing has helped with my sleep besides Amitriptyline "max dose of 150mg".
I have been on twice the max dose of sedatives like Restoril while my sleep center countered by making me more wired..
So do you think doxylamine might help me?

Xyrem might have a shot but I have a better chance of seeing God before my insurance would pay for that......

The Amitriptyline never helped my pain.It was good for one thing,sleep.....
After a 2 1/2 year quest..
I just found a "REAL" pain doctor a month ago..
I am on Fentanyl 25mcg transdermal patch
and.
Pure Oxycodone max dose 10mg 4x a day (without the liver killer Acetaminophen)

My pain is still not under complete control if you can believe that......

 

[CFS_for_19_years]

I might give doxylamine a shot...
Maybe you could save me the trip.
I will let you know that nothing has helped with my sleep besides Amitriptyline "max dose of 150mg".
I have been on twice the max dose of sedatives like Restoril while my sleep center countered by making me more wired..
So do you think doxylamine might help me?

I have been on a ton of pain meds for years, not quite at the level you are. I always have that tired and wired feeling and doxylamine just relaxed me, like OK, NOW I need to go to bed, and that was at half the suggested dose. It almost felt like a tranquilizer but stronger!

It's one of the ingredients in Unisom, which might sound familiar to you. The other ingredient in Unisom is diphenhydramine, an antihistamine otherwise known as Benadryl. I can't take Benadryl because it makes me restless - it does this to some people.

It's worth a try. It's super cheap, like $8 for a bottle of 100 or so, on Amazon or eBay. This is the seller I bought mine from:
www.ebay.com/itm/351059988399

I can't believe that after my seeing more than 30 docs over the last 20 years - primary care docs, sleep docs, psychiatrists, rheumatologists, etc. not ONE of them mentioned doxylamine. Every one of them heard about my sleep problems. Shaking my f***ing head now.

 

[Tired of being sick]

can't believe that after my seeing more than 30 docs over the last 20 years - primary care docs, sleep docs, psychiatrists, rheumatologists, etc. not ONE of them mentioned doxylamine.

Yeah,doctors pretty much only know how to treat BP and diabetes plus any made up condition they can push for big pharma.......
To phatten their wallet of course