Sylvia: air hunger from amitriptyline withdrawal

[sylvia]

Hi,

 

I've joined this group because I'm seeking support for withdrawal from low dose amitriptyline for pain. Since my final drop from 2 mg to 0 mg on June 21, I am experiencing air hunger (shortness of breath or dyspnea), even after 5 weeks. 

 

To make a long story short, I've been dealing with gastritis (stomach pain/inflammation) since 2017, but had a very unexpected flare-up with no (at the time) identifiable trigger starting in December 2021, and was subsequently diagnosed with "functional dyspepsia" and put on amitriptyline 10mg (in the form of 2mg drops) for nerve pain. I felt like a zombie on 10mg, so after only 4 nights dropped to 6mg, which was more tolerable. After about 2 weeks, I was finally able to identify the hormonal contraception pill as the cause of my stomach pain, so I stopped taking it, which made the amitriptyline redundant. After my stomach was feeling a bit better, I dropped to amitriptyline 4 mg in March, and then to 2mg in early May. My final 2 mg dose was on June 20, and on June 22 I started experiencing shortness of breath which neither improves nor worsens with exercise, and is somewhat alleviated by yawning. 

With every 2mg drop I experienced several days to 1 week of headaches, insomnia, agitation, anxiety and digestive issues (ongoing struggles with gastritis as well as weaning off the stomach acid reducing drug, omeprazole, make it impossible to say if any of my current digestive issues are connected to amitriptyline withdrawal). It is only since I went to 0 mg that I am experiencing this shortness of breath, and it doesn't seem to be going away even after 5 weeks. I also had my 2nd Pfizer covid vaccination on June 13th, but I have none of the other symptoms such as elevated heart rate, etc, that are connected to the possible vaccine side effects of peri- or myocarditis. I often have summer allergic asthma, but my inhalers don't seem to resolve this, and it is not accompanied by the usual wheezing. I have seen my GP, and she says my lung and heart sounds are good, and the EKG and lung function test were normal. My GP didn't really think that it's withdrawal. Neither did my therapist/psychiatrist, but I am also no stranger to unhelpful doctors who don't listen to their patients. When I originally started my gastritis journey in 2017, a mean doctor bullied me into taking sertraline (which I was then on for 2+ years) because he refused to believe that my lack of appetite was physiological, not depression. I was desperate after being unable to eat for 3 weeks, so I did what he said, but it never sat right with me, and then I was afraid to stop taking sertraline for a very long time. 

 

I have done quite a bit of searching and reading about air hunger and how it connects to amitriptyline withdrawal. I have found a few others on Facebook who have experienced this, but I've not been able to find any real information about it, and it isn't listed as a possible withdrawal symptom in the literature I've read. I also am unable to discern if this is hyperventilation or not, as I don't feel like I am breathing more than I should, but yawning does seem to relieve it somewhat. 

 

I would really like to hear from others who have experienced this, and understand if there is a timeline that can give me hope. Does anyone understand the physiological mechanisms of why this might be happening? I feel that the better I can scientifically understand what is going on in my body, the better I'm able to cope. 

Some days are indeed slightly better than others, but it isn't linear, and I am extremely discouraged and feeling hopeless. 

[Altostrata]

Welcome, @sylvia

 

Good for you, that you identified the drug that was causing your symptoms.

 

Unfortunately, it appears you were taking amitriptyline long enough to develop physiological dependency -- that is what the withdrawal symptoms (such as air hunger) indicate.

 

Did you have any other withdrawal symptoms after you reduced to 4mg in March? How about 2mg in May?

 

Do you have any amitriptyline left?

 

Are you still taking omeprazole?

[sylvia]

Hi @Altostrata, 

 

Thanks for replying! 

 

Both times when I dropped to 4mg in March and then to 2mg in May I experienced headaches, insomnia, agitation, anxiety and digestive issues, but that went away after several days to 1 week. (There may be some residual digestive issues due to withdrawal, but because of my stomach condition it is always hard to tell what is just baseline for me, and what is more.)

 

I have about half a bottle of amitriptyline left, but would be very hesitant to start taking it again, if only to have to go through withdrawal again at some point. I would rather power through and be done sooner...as long as I can trust that this feeling will go away. I also read somewhere that I may have missed my window for reinstatement. 

 

I have weaned VERY slowly down to 20 mg of omeprazole from 30 mg since February. I am extremely sensitive to changes in omeprazole, and have quite a bit of experience with weaning when it comes to this drug, so have stabilized here with 20 mg for the time being, until I am confident that the amitriptyline withdrawal has resolved. 

 

Does withdrawal always go away eventually? I feel like I can bear it better if I can trust that eventually I will feel normal again. 

[Altostrata]

On 7/26/2021 at 9:15 PM, sylvia said:

Does withdrawal always go away eventually? I feel like I can bear it better if I can trust that eventually I will feel normal again. 

 

We cannot predict when withdrawal syndrome, which is what you have, will go away. If it hasn't gradually improved over the last month, it may be protracted for many months.

 

A very small reinstatement is the only way we know of that this may be somewhat reversed. In your case, that might be 0.5mg amitriptyline (one-half milligram). For background, see Tips for tapering off amitriptyline Please let us know how you're doing.

[sylvia]

I've been in a bad place for the last couple of days. 

 

I'm still experiencing air hunger/shortness of breath, 7 months after my final drop, like no deep breath can quite satisfy me.  I've noticed one other symptom which is possibly best described as acid reflux, and just feels like when I eat, the food is sitting right below my esophageal sphincter, but never quite comes up. 

 

There have definitely been some good weeks where I don't notice the symptoms at all unless I really look for them! I've also started noticing patterns. Certain times in my menstrual cycle I feel a lot better, but usually the days right around my period the symptoms return with a vengeance, almost like the drop in hormones triggers a return of symptoms. It's been so long now, and I was on such a low dose that I sometimes doubt that it is withdrawal at all. It's currently right after my period and all the symptoms are back. I'm just so discouraged and desperate and the thought of going on like this for my whole life is totally overwhelming. 

 

Does anyone else experience "air hunger" and "reflux" as withdrawal symptoms? 

 

Does anyone else experience waves that line up with or seem triggered by their menstrual cycle?

 

Is this really still withdrawal, or am I crazy? 

 

Why is there no medical support system in place to help us? 

[Erimus]

Hello @sylvia

 

I’ve experienced my fair share of air hunger and reflux, so I can give you my view on the situation. For me the air hunger is directly related to sertraline (as is the reflux) and worsens when I make too big of a change in my dose. It’s definitely a drug/withdrawal related problem. I’ve had it for around 8-9 months now but I know it will settle as it has done previously. 
 

Things that I find help: deep breathing exercises for 20-30 mins per day. Breathe in slowly through the nose for 4 seconds, hold for 4 seconds, and breathe out slowly through the mouth for 8 seconds. I like to listen to meditation, affirmations or calming music whilst I do this. Distraction, and keeping yourself busy are also important. The air hunger is quite unnerving at first but is completely harmless. The fact you’ve experienced windows is definitely a positive sign that things will iron out as your nervous system finds balance again.

 

I can’t comment on menstrual cycle as I’m male ha but I’m sure the change in hormones can impact the nervous system, much like stress and cortisol changes do.

 

Good luck and remember it will get better!

[Bestill]

I have air hunger.  Def worse around the time of month which is any day now.  As I have decreased it has gotten a tinch better but still stinks.  I notice when I have back pain between the shoulder blades, it’s bad. It’s been bad since Oct when I tapered too much and just never went away.  I have to be completely relaxed and it’s better.  I feel your pain and just want it to go away.

 

bestill

[Selfhealer]

Hey there @sylvia. I hope you had a withdrawal free day. I am now in month 10 since I CT Escitalopram. It’s not the same with amitriptyline but I don’t think they’re that different either. All of them are pure poison after all. So I wanted to state, like the rest of the fellow sufferers did above, that I too suffer from air hunger. It has been so irritating to say the least. It started when I first started tapering (I said CT before cause my taper lasted 2-3 weeks so I think its no different🤷🏼‍♀️) Cipralex and it has never stopped ever since. There has been times which it was more manageable for sure. But only disappeared completely maybe for 1 or 2 days in these 10 moths. BUT! I can say that the last month feels kinda different from the other ones. I removed a huge stressor from my life and although I think air hunger is a WD byproduct, this helped a lot to alleviate it a bit. I hope I helped even the slightest. 😊

[peaceandlove]

On 2/14/2022 at 12:19 PM, Bestill said:

I have air hunger.  Def worse around the time of month which is any day now.  As I have decreased it has gotten a tinch better but still stinks.  I notice when I have back pain between the shoulder blades, it’s bad. It’s been bad since Oct when I tapered too much and just never went away.  I have to be completely relaxed and it’s better.  I feel your pain and just want it to go away.

 

bestill

hey how are you doing. Has your air hunger gone away yet? I have the same problem 

[peaceandlove]

On 2/19/2022 at 3:01 PM, Selfhealer said:

Hey there @sylvia. I hope you had a withdrawal free day. I am now in month 10 since I CT Escitalopram. It’s not the same with amitriptyline but I don’t think they’re that different either. All of them are pure poison after all. So I wanted to state, like the rest of the fellow sufferers did above, that I too suffer from air hunger. It has been so irritating to say the least. It started when I first started tapering (I said CT before cause my taper lasted 2-3 weeks so I think its no different🤷🏼‍♀️) Cipralex and it has never stopped ever since. There has been times which it was more manageable for sure. But only disappeared completely maybe for 1 or 2 days in these 10 moths. BUT! I can say that the last month feels kinda different from the other ones. I removed a huge stressor from my life and although I think air hunger is a WD byproduct, this helped a lot to alleviate it a bit. I hope I helped even the slightest. 😊

hey how are you doing. Has your air hunger gone away yet? I have the same problem

[Bestill]

@peaceandlove  Hi there.  It has not. I have had it for over a year.  Most of the time it’s something I can just live with.  Worse when my back pain is present and time of month.

 

I am tapering very slowly however and have heard it goes away at lower doses.  Don’t know if that will be true but I am a firm believer it will go away eventually.

 

How long have you been noticing yours?

[peaceandlove]

7 hours ago, Bestill said:

@peaceandlove  Hi there.  It has not. I have had it for over a year.  Most of the time it’s something I can just live with.  Worse when my back pain is present and time of month.

 

I am tapering very slowly however and have heard it goes away at lower doses.  Don’t know if that will be true but I am a firm believer it will go away eventually.

 

How long have you been noticing yours?

Hello. Thanks for replying. & Oh ok so you’re still tapering. Omg you’re so strong a year of this sucks. But I noticed it a few months ago & now it’s back. I also get acid reflux so it’s hard to tell what’s what if it’s air hunger from that or just in general. Either way it’s very annoying. Do you ever get acid reflex from withdrawal?

[Bestill]

@peaceandlove I don’t feel like I have acid reflux but doesn’t mean something isnt going on. I do feel like I have indigestion at times with burps or it feels like bubbles in my chest but it isn’t a everyday occurrence.

 

Yes, I feel like my stubborn mind keeps me going but I have learned techniques to help with getting a deep breath, relaxing my body, choosing foods that are more helpful and just being gentle with myself.  Took some time for me to get there and there are moments of frustration or weakness.  All part of the healing process.

 

It will all just go away someday.  For both of us.

 

❤️

[peaceandlove]

17 hours ago, Bestill said:

@peaceandlove I don’t feel like I have acid reflux but doesn’t mean something isnt going on. I do feel like I have indigestion at times with burps or it feels like bubbles in my chest but it isn’t a everyday occurrence.

 

Yes, I feel like my stubborn mind keeps me going but I have learned techniques to help with getting a deep breath, relaxing my body, choosing foods that are more helpful and just being gentle with myself.  Took some time for me to get there and there are moments of frustration or weakness.  All part of the healing process.

 

It will all just go away someday.  For both of us.

 

❤️

Oh you would know if you had acid reflux trust me lol it’s horrible. I realized everyone experiences anxiety/stress in different places & mine just happens to be my stomach unfortunately. Tons of people complain about insomnia but I really don’t experience that for example. But Thank you 💕 what do you do to relax your body, yoga ? 

[Bestill]

@peaceandlove

 

i lay on an acupressure mat.  I wear a very thin T-shirt right now because bare skin is too much.  It helps with my back pain.  Meditation music with binaural beats.  A cat nap.  Now I’m pretty good at laying or sitting and let myself be relaxed.  My mind knows that none of this will hurt me.  Lots of self talk and self soothing.  I have had a year to do this.  😉

[peaceandlove]

On 11/21/2022 at 3:49 AM, Bestill said:

@peaceandlove

 

i lay on an acupressure mat.  I wear a very thin T-shirt right now because bare skin is too much.  It helps with my back pain.  Meditation music with binaural beats.  A cat nap.  Now I’m pretty good at laying or sitting and let myself be relaxed.  My mind knows that none of this will hurt me.  Lots of self talk and self soothing.  I have had a year to do this.  😉

Cool, sounds nice. I wasn’t able to meditate at first during withdrawal but I will try again along with restorative yoga