Everywhere I looked it said Dr. Pockinki is taking new patients so I called. No one answered in the middle of the day so I had to leave a message. A woman returned my call and she was extremely rude and very bluntly said that Dr. Pockinki is not taking any new patients and there is no waiting list. I told her she could be more understanding and helpful and she immediately hung up on me. I understand that there is a demand for doctors like this but his staff could be more understanding and leave some hope for people with EDS who are always exhausted. I am not a criminal for having this terrible disease. I find an increasing number of staff who work for doctors who treat these rare diseases who have no compassion or caring, their doctors should do a better job at training their staff. I often feel like I live in a third world nation with the poor treatment available for this disease.
This is super interesting and useful, thank you! I would like to add that gabapentin is addictive. I took it for three years and it helped my sleep and pain, but left me very foggy and I wanted to get off of it. I did a monitored 9-week taper and still had horrible withdrawal symptoms after those 9 weeks- headache, the shakes, overall feeling horrible. I am very reluctant to try again. :(
I had the same issues with Gabapentin. My doctor switched me to Clonidine to treat my insomnia, which is a medication Dr. Pocinki recommended for EDS patients, since it doesn't carry the risks of addiction, dependence, or other side effects. Clonidine can also treat POTS, anxiety, and migraines; which Dr. Pocinki has discussed in some of his other videos.
What about weekly sensory deprivation floating? It's helped me TREMENDOUSLY. Ironically I started in 1988 at a local hospital's "stress lab" prior to even knowing I have EDS and it helped. I fell out of it but began again doing so more regularly and wow it helps.
I would avoid Cymbalta if you can. I am very sensitive to many meds and Cymbalta put me on the couch for weeks. Plus, trying to get off of them gave me brain shivers - such a strange problem. I felt like I was next to myself and had severe reaction. I was going off of them very slowly but not slowly enough. It was way back in 2006 so I'm fuzzy on doses. I do know that after I was down to taking 1/4 of the lowest dose, I had to start counting the particles in that and just reducing it by a few weekly. I was on Welbutrin later and it was just as bad to get over. Cymbalta also caused odd reactions in my nose pores and I ended up getting skin cancer in one pore. The pores were not better for 7 years when I had sepsis and was taking masses of antibiotics for that. So odd. I knew people with severe neuropathy that it worked wonders for, but for an antidepressant, not so much.
Where can I take my daughter for this treatment. I have sent it to her doctors but don't think that is helping. She is all ready diagnosed EDS , POTS, Autonomic Dysfunction, Anxiety, MCAS, sleep disorder. Had to take her off propranolol due to anaphylatic reaction so put on Corlanor which is not helping like the propranolol did. They didn't try clonidine or guanfacine but don't understand why. The allegra pepcid combo is not helping her. Not sure why they don't try Hydroxyzine? is there a list of doctors that do try this treatment?
There needs to be way more of these guys out there. Correction of autonomic dysfunction is huge.
Everywhere I looked it said Dr. Pockinki is taking new patients so I called. No one answered in the middle of the day so I had to leave a message. A woman returned my call and she was extremely rude and very bluntly said that Dr. Pockinki is not taking any new patients and there is no waiting list. I told her she could be more understanding and helpful and she immediately hung up on me. I understand that there is a demand for doctors like this but his staff could be more understanding and leave some hope for people with EDS who are always exhausted. I am not a criminal for having this terrible disease. I find an increasing number of staff who work for doctors who treat these rare diseases who have no compassion or caring, their doctors should do a better job at training their staff. I often feel like I live in a third world nation with the poor treatment available for this disease.
I am a sleep medicine dentist who has hypermobile EDS. Feel free to reach out if I can help!
Me to in UK just the same
Hi. Both at 7:00 and 1:25:25 it brings out no new patients, consults or email. "Just swamped"
@@anneg8319 not under
Wish I could meet Dr. Pocinki!!
Excellence in all aspects. What a help to hear this. Thank you!
Sorry for a little static up front.
A very specific video for me uploaded on my birthday lol Awesome
At 7:00 in the presentation it states no new patients, email, etc 💖
This is very informative, Thank you!
This is super interesting and useful, thank you! I would like to add that gabapentin is addictive. I took it for three years and it helped my sleep and pain, but left me very foggy and I wanted to get off of it. I did a monitored 9-week taper and still had horrible withdrawal symptoms after those 9 weeks- headache, the shakes, overall feeling horrible. I am very reluctant to try again. :(
I had the same issues with Gabapentin. My doctor switched me to Clonidine to treat my insomnia, which is a medication Dr. Pocinki recommended for EDS patients, since it doesn't carry the risks of addiction, dependence, or other side effects. Clonidine can also treat POTS, anxiety, and migraines; which Dr. Pocinki has discussed in some of his other videos.
What about weekly sensory deprivation floating? It's helped me TREMENDOUSLY. Ironically I started in 1988 at a local hospital's "stress lab" prior to even knowing I have EDS and it helped. I fell out of it but began again doing so more regularly and wow it helps.
I always feel great after floating, but at $90 a session in my area, it's not very accessible :(
I would avoid Cymbalta if you can. I am very sensitive to many meds and Cymbalta put me on the couch for weeks. Plus, trying to get off of them gave me brain shivers - such a strange problem. I felt like I was next to myself and had severe reaction. I was going off of them very slowly but not slowly enough. It was way back in 2006 so I'm fuzzy on doses. I do know that after I was down to taking 1/4 of the lowest dose, I had to start counting the particles in that and just reducing it by a few weekly. I was on Welbutrin later and it was just as bad to get over. Cymbalta also caused odd reactions in my nose pores and I ended up getting skin cancer in one pore. The pores were not better for 7 years when I had sepsis and was taking masses of antibiotics for that. So odd. I knew people with severe neuropathy that it worked wonders for, but for an antidepressant, not so much.
Can hydroxyzine be used when someone has gastroparesis?
Where can I take my daughter for this treatment. I have sent it to her doctors but don't think that is helping. She is all ready diagnosed EDS , POTS, Autonomic Dysfunction, Anxiety, MCAS, sleep disorder. Had to take her off propranolol due to anaphylatic reaction so put on Corlanor which is not helping like the propranolol did. They didn't try clonidine or guanfacine but don't understand why. The allegra pepcid combo is not helping her. Not sure why they don't try Hydroxyzine? is there a list of doctors that do try this treatment?
Has Dr. Pocinki worked with Ketamine?
Doctor do you have treatment of KLS
And ambien type pills do nothing for me and doctors don’t want to prescribe zanax,which helps some,with pain medicine....sigh