A lifetime of being overmedicated living with Ehlers-Danlos Syndrome- Daisy's story
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- Опубликовано: 19 ноя 2023
- Our awesome patient, Daisy, shares some of her medical journey with Ehlers-Danlos syndrome, how her being overmedicated started at a very young age, her experience with the medical establishment after being diagnosed with EDS, and how she finally gained the insight needed to improve her own health and become more active, engaged, and vibrant than she has been in many years. We know that many of you in the EDS community will relate to her story. We are so blessed to be a part of her journey! Daisy, we continue to pray for your continued healing and look forward to seeing the miracles God has in store for your life.
To learn more about how we treat Ehlers-Danlos syndrome, including our webinars and research on multi-body area stabilization treatment with Prolotherapy, you're always welcome to check out our free articles: www.caringmedical.com/conditi...
The Hauser Neck Center & Caring Medical Florida are located in Fort Myers, Florida in the US. We treat patients who travel to our center from all around the globe, however, please understand that we do not treat all cases. If you are looking for our team to review your case and possibly see you in our center, you can contact us through www.caringmedical.com, call us at 239-308-4773, or email info@caringmedical.com.
*Please understand, we cannot give specific physician referrals or online medical recommendations.
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**DISCLAIMER: As with any medical treatment, no guarantees or claims of cures are made as to the extent of the response to treatment that every person experiences. Every therapy/treatment has patients who experience varying levels of success and failure. Results may not be the same from patient to patient, even with a similar diagnosis, as the body’s internal status is unique to each individual.
This is Daisy. Thank you so much for allowing me to share my story in hopes to help someone else. I hope many more people will be able to have stories of hope to share❤
Thanks so much for sharing, Daisy! hEDSer here, myself. Curious what medicine was personally affecting your connective tissue so negatively? I know we can be unique but also similar, I'd appreciate the insight!
@@janetatum8966 Valacyclovir, an antiviral.
Hi Daisy, fellow Prolo Warrior, I am celebrating you! I have watched this several times and cried happy tears for you. I can relate in so many ways. God is great! I definitely will pray for you and your continued healing. Dr. Hauser and the entire team are so wonderful and a huge blessing! 🤗💜
@@peggymarler1842 Thank you for your encouragement🥰
@@jdcheco My pleasure! We need to stick together and lift each other up!
Dr Hauser and Danielle really helped my wife. We have spent the last year traveling to Caring Medical for treatments. Dr Hauser and his staff are very professional. They spend time with you trying to get to the root of what’s causing you problems.
Thank you so much for the kind words Jason! We are so blessed that we have been able to help your wife on her healing journey! We appreciate individuals like you!!
For me, getting to the root cause is what so many doctors DID NOT KNOW HOW to figure out. But thank God that my Functional Medicine doctor & Caring Medical are trained to help people like us get to the route cause. I went to the doctor for decades, expecting they had all the answers, but they didn’t. My conventional doctor who diagnosed me was humble enough to tell me that I needed to find help for my hEDS. I hope the work that’s done at Caring Medical and Functional Medicine will one day become the standard of care for people like us. (I wonder if Caring Medical is considered Functional Medicine? 🤔)
14 medications wow. 💊 I'm sharing this on a drug rehab guy I follow on Facebook. This is helpful.
Literally the best Dr in the world! It was because of his research on the vagus nerve that I even had a clue what was wrong with me and started going in the right direction when all the other doctors (supposedly the best in the U.S. LOL) just wanted to med me up and tell me I had anxiety and pulled muscles 😡 Dr Hauser diagnosed my upper cervical instability and was the first doctor who ordered me appropriate scans to confirm the instability and what (structurally) is actually going on in my neck. I had one treatment so far and see some improvement already 😃🙏🙏 Can't wait to come back next month! Caring Medical really cares about their patients!! 💛💙🙏
Thank you for such sweet words! We are so grateful that you found our clinic and we have been able to help you in your healing - see you soon!
Daisy, I love your story❤️ praying you will continue to heal! You’re in great hands down there at Caring Medical, I have no doubt I am still here today because of the treatment I received there from Dr Hauser and his staff! So thankful for them!
Thank you for the sweet words!
Thank you for your encouragement and for sharing!
You stayed open nice to know there's real doctors who know science.
I have suspected CC Instability for a while but have never gotten it tested. Dr. H always talks about symptoms like 'popping, clicking, or grinding' in the head, neck, or other joints. I rarely have that kind of thing, although today has been the exception. This afternoon, I sneezed and heard a loud crack and pop, and then this evening, when it got really quite in the room, I was flossing my teeth getting ready for bed and I could hear a sound, in my head, that sounded more like a squeaky hinge that needed tightening and oiling! Just had to come and share that, b/c I know Dr. H would appreciate his analogy being a real-life example.
This is interesting. Wow. Thanks for sharing this.
I know that feeling and 5 meds for me... my faith has weakened some but its more out of frustration. Im will get down to caring medical, so how , some way !
We are praying for your complete healing - keep fighting and don’t give up hope!!
I have come across this channel and website while doing research to figure out what is wrong with my daughter. All tests are coming back negative but she cannot work and has had bad shaking muscle spasms with neck and back pain. When she was young a doctor said she might have EDS but never did the proper test to diagnose.We are becoming increasingly frustrated but I pray everyday for me to find some answers and then a video like this comes up in my feed 🙏
Anika - we are praying for your daughter’s complete healing! We can recommend that your daughter get evaluated for cervical instability - this is something that we do in our office with DMX, cone beam and ultrasound. We would love to get her in for an exam and consult - that way she at a minimum has a diagnosis. Please contact us directly and someone from our clinical team can get to know more about her case! Don’t give up hope!
This is interesting, considering so many of us are undermedicated and have to fight to get decent pain control. Its crazy how few doctors understand this and also how to help patients function. I use Tylenol, which is not helpful long term, when you have to take 3900mg a day to just get through the day without crying
I've had massive GI issues, take pepcid, tums, fiber, occasionally laxatives, meloxicam, now, thankfully, also have tramadol to cut down on tylenol, and one low dose anti-anxiety med.
I have had 2 full knee replacements at age 49, because of my connective tissue disintegrating.
I have arthritis everywhere, especially in my neck and hands, severely.
I have celiacs and lactose intolerance.
I would love to understand this diet, because I have lost 40lbs, but need to lose 80 more to be "normal" and hopefully to increase my mobility and less pain.
I get horrible pain in my neck and head, and constant neurological issues, including double vision, blurred vision, orthostatic tachycardia, horribly stiff muscles, I take a muscle relaxer 2 to 3 times a day as well.
Im so exhausted every day.
What is this diet??
Under medicated?
Did you hear Daisy say, that one of her medications was causing a lot of her issues?
If you are taking Tums, you are making digestive issues worse. Watch Dr Eric Berg videos and learn how nutrition can help you.
Good luck to you.
@dianarhyne i think you misunderstood. I know many more people who are UNDERmedicated for their pain, so I was responding to the title, which said "overmedicated".
I just found it ironic, because of the struggles of many people I know with EDS and other issues. It is significantly harder to get pain relief, as insurance companies, doctors, pharmacies and others are obstructing genuine patients who need pain relief, in the name of "helping" the opioid crisis.
I'm a paramedic and I fully understand what the opioid crisis has done, the damage, the deaths and tragedies. But for actual chronic pain patients, all it has done, this effort to "combat" the crisis, has made it a horrible journey of pain and disability.
When there was no other way to manage the pain, it was awful to not have access to pain medication. Hopefully more health care providers can learn HOW to guide someone to the treatments and life style changes that allow for natural pain relief. This is why I want to share my personal experience.
When I got my brain mri and seen I had tbi I was taking tramadol and that stuff had my brain tripping. But still really not eating much. I lost 54 lbs in 7 months. Using a heat pad on my neck 24 7 because I can no longer take ibuprofen for inflammation and pain. So I'm lost at what to do. Tinnitus getting worse. I live in Florida emailed you waiting for the information.
We are so sorry to hear this Donnie - thank you for contact us, our clinical team will send you all the information as soon as they can. We hope to see you in person soon!
Sir i feel in neck and frontal area and just after skull i feel a storage kind of things and still now no serious issues has occurred for me but an unusual sensation and some things is storing sensation occurs in my body every day
If fluctuating between low and high pressure, can that indicate a csf leak? I get pressure headaches that feel better once I’m laying down. I’m suspecting a leak as I also get pulling down feel like gravity force. It causes bad pain especially inter scapular back pain and heavy limbs. I’ve been told this is usually low pressure symptoms due to low csf. Then the body tries to replenish the csf going overboard or working quickly which then cause high pressure. Idk 🤷🏻♀️
Do you guys think cold therapy is good for CCI patients. Or would it obstruct blood flow?
Taking a cold shower is something that we suggest as a tip to increase vagal tone as it helps to stimulate the vagus nerve.
What medication was making her sick? And which symptoms did it cause her ?
Valacyclovir made my joint instability worse to where I needed body braces from the neck down, yet still had a quicksands like feeling in many joints. The pain was relentless, only managed by strong medication 24hrs/day.
Question Dr Hauser, how long will the procedure last?
Hi Joshua - The procedure is very quick actually, Dr. Hauser is very good at what he does! Most of our patients tend to need about 3-6 treatments within 4-6 week intervals.
I take the question as once your finished a regimen of treatments ….how long does the relief last? It depends if you have an underlying condition. RA or ligament hypermobity can mean you have flares and need treatments more than someone who doesn’t have other conditions.
@@CaringmedicalProlotherapy thanks for your response. To clarify my question Im asking, once all prolotherapy treatments are done, how long will the results last? 1 year? 6 years? Or longer?
Yes, Prolotherapy lasts longer. After the initial treatment series, most people do not need to have the area retreated unless there is a new injury. In some cases, a tune up treatment is appropriate if symptoms begin to resurface, but generally a whole series of treatments wouldn't be needed unless there is a new injury. In our patient experience playlist, you'll see some people who have not been treated in years or decades and wanted to share their story. ruclips.net/video/Ql__MRqeEYc/видео.htmlsi=0zpO0PG2RG_q6cyE
It is different from treatments like cortisone or botulinum toxin injections. Hope that helps. :)
do u get treatment yet？
Sir can u figure out my problem in neck which is connected to whole body if I came to flourida
We would love to help you, please contact our office directly and we can learn more about your case.
sir can you do video on twisted blood vessels in nevk
Lol dirt don't hurt.