I've been having a persistent issue that I just can't crack. I've pretty much given up and am just going for acceptance and equanimity, but I figured it'd be worth sending Daniel Ingram a message, since I just got a nice detailed medical write-up on the issue. Since I realize he may not write back for some time and he encourages folks to post on here as well, I figured I'd just copy paste it. In particular I'd love to hear from a Dr/ someone with medical expertise, who also has meditation/ kundalini expertise.
Anyway, here goes nothing:
I'm a 39 year old writer/ musician/ teacher and meditator from Toronto. I thought it might be helpful to reach out with this issue given your combined medical knowledge/ meditation knowledge.
Basically I have a rhythmic diaphragmatic spasm that never goes away. It developed at I time where I was hitting access concentration consistently for the first time and that channel in the body (left side of the abdomen and the rib area) also opened up and released a torrent of fear and anger sensations over the course of two days on a 10-day retreat in January 2023 (I counted 16 panic attacks in which I "held equanimity" and released, released, released!). There were accompanying kundalini phenomena (visuals of the Buddhas face, mushrooms growing on trees, etc.), spastic energy release and explosive pleasant sensations in the body when the final "attack" passed.
The thing is, I have chunky kundalini energy stuff all day everyday. Lights when I close my eyes, extremely intense sensations and spasms in the body, tightness and pain in my left abdomen... I can get to sleep at night but sometimes it's hard. I also take a low dose of ritalin for ADD and drink a coffee or two a day. I have a one year old son and a busy life so it would be challenging to drop the stimulants at this moment. I'm wondering if I opened a can of worms and haven't fully let all the worms out. Can't figure out what to do other than equanimity and acceptance.
My background is in Vipassana, been sitting for 10 years, I'm familiar with your writing and have learned lots from listening to people like Michael Taft/ Shinzen/ Cula Dasa etc. I've been going to the Toronto Zen Centre more recently and sitting a gentler practice as well. My perception has shifted a lot in the past year and I have some sense that I might have hit stream entry, but I think more likely I'm cycling.
If I meditate these days it's just light breathing practice, somatic descent or metta. But as I said, family life/ professional life is keeping me quite busy.
There's some attached medical stuff below, but I'll sign off here and just say please be in touch if you think it might help to chat
Best,
D
For the medical side of things, my mother in law just took a look at what's going on and wrote me up this nice detailed report. She has no interest in meditation and such things:
In Summary:
After talking to you more and actually observing your abdominal movements, I have come to believe that you would benefit from a work-up for "diaphragmatic flutter" or "belly dancer's dyskinesia".
The most easy to obtain and least invasive investigation would be an ultrasound of your diaphragm. Further investigations should probably include EMG testing of your phrenic nerve as well as possibly an MRI of your brain and spine (to rule out MS or tumours), and laboratory investigations (to assess for metabolic pathology). It is obviously important to rule out other possible causes including brain and spinal cord pathology as well as metabolic disorders that might be affecting the diaphragm muscle.
You do have an upcoming appointment with a thoracic surgeon as a result of the incidental finding of a hiatal hernia. There is some suggestion that these hernias might have a role in irritating the diaphragm and bringing on diaphragmatic flutter, so this should certainly be looked into carefully. Hopefully this physician will have some experience with this condition.
Diaphragmatic Flutter:
There is no clear cause of diaphragmatic flutter that I have found, but a number of neurological and metabolic causes are suspected as is the possibility of medication related dyskinesia. Your required use of stimulants, the timing of which does have some connection with the onset of these abdominal symptoms does raise this possibility in my mind. When you took a month or so off the stimulants after finishing school this year, you found no improvement in your symptoms, but unfortunately, dyskinesias do not always resolve.
I have attached 3 articles that I found of interest - there are others out there. I suggest you forward them to your physicians, as well as this note if you wish, for consideration.
What I observed:
You showed me your abdomen during an "episode" - really just a time when you were not contracting your abdominal musculature. What I saw was rapid, involuntary, contractions of the left side of your abdominal wall immediately inferior to your rib cage. There was a bit of translation of the movement to your right abdominal wall, but it appeared to be primarily affecting the left. The movement was strikingly similar to a "belly dancer".
You describe a sense of breathlessness or dyspnea and significant discomfort in your left upper abdomen, left chest and sometimes neck and throat while these movements occur. Your symptoms began, as I understand it, with a sense of heart palpitations.
The combination of involuntary unilateral upper abdominal wall spastic movements with chest discomfort and dyspnea makes it highly suspicious for originating from the diaphragm.
I had never seen this type of spastic motion in my years of medical practice, and my immediate thought was that this is much more likely phrenic nerve or pathology, so I did a bit of digging, and landed upon the possibility of "diaphragmatic flutter". This is a rare condition - first described by Antonie van Leeuwenhoek, and sometimes referred to as "van Leeuwenhoek disease".
What I suggest:
Please bring this idea to the attention of your GP and thoracic surgeon for their consideration.
In the meantime, I suggest that you continue to abstain from alcohol, continue very moderate consumption of caffeine and consider abstaining from that entirely as well for a while, get regular exercise, continue your best sleep hygiene efforts and meditation practice, and I suggest you continue to work on the controlled breathing exercises you learned some time ago. You had mentioned that they seemed to help a bit, and there is at least one case report showing the use of ventilatory support as effective for control. I wonder if you might be able to achieve the same effect through breath work.
Good luck with this and let me know if I can do anything else to help get to the bottom of this.
It had a very clear onset associated with a very emotionally intense situation... so it does seem related.
