Glad to hear that you're getting some wins, even if small. I've found gardening/growing things is such a good therapy lol, glad you're enjoying it too. It's really nice when you see bees, butterflies, and other insects making a home and getting food in plants you've grown. I had a few barrels and areas with milkweed too for monarchs and dill for swallowtails :) I had a couple of questions: 1. Any tips for sleeping with the neck brace? When I sleep with the brace it feels like I can't breathe, but if I loosen it, it's not supportive enough. 2. What would you say your first issues were with intercranial hypertension? I know people can be different, but I'm having a hard time finding people actually describing their experience. I had neurology appointments that are now going to be via telephone. When my PCP referred me, one thing they mentioned was intercranial hypertension. I've had a bad year with debilitating headaches and issues that seem to be linked to whatever is causing the headaches. Which leads me to 3. Any advice for going into neuro appointments? I've had one and he was incredibly dismissive and seemed to not know much about EDS... Or care to learn. Thanks and keep your chin up... Your hair is another win, looks great!
Hi Carissa, thanks for your message! I'm glad to hear you've been able to enjoy gardening as well. As for your questions... 1) Sleeping with the brace was rough for me at first, but it actually stopped my seizures for a while when I first got it, so I preferred to wear it regardless of it being really uncomfortable. I seem to like sleeping on my side better with it. Now I'm definitely a lot more used to sleeping in it but I don't know if it will ever feel comfortable haha. I wish I had some better advice/hope you can find something that works for you! You could always try a different collar type as well. 2) As for IH, I have a video that I talk more about my experience with it th-cam.com/video/SrR0CbVQfoA/w-d-xo.html Sometimes it's tough to distinguish symptoms from conditions like chiari, intracranial hypertension, and cci--because pretty much all 3 can cause the exact same symptoms. Often if you have IH, you will feel worse when laying down, coughing, bending over, etc. Also increased pain/symptoms during thunderstorms or at high altitudes. Those things raise intracranial pressure more. 3) My best advice for going into appointments is being prepared with questions and research that you've done beforehand. Don't be afraid to ask about certain conditions you think you may have and to be tested for them. Some doctors are more receptive to it than others. I hope you can find one that can help you! Wishing you all the best!
I've been clinically diagnosed with hEDS but we meaning me and my doctors think it could actually be cEDS so i'm waiting an appointment with a geneticist. Anyways I started on LDN about 2 months ago and wow it has changed my life! I have many more better days than bad days now, feel like i have more stamina and am able to be more social and attend more pt sessions. Hope it continues to improve your life like it has mine!
I actually have Naltrexone compounded in my fridge right now I just have to get extra brave and trial it in between food trials I'm doing due to Mast Cell Activation issues. Risking reactions right now are a lot more dangerous if I end up in the hospital so I think I will wait awhile longer. Hope it continues to help you and that your health improves.💗
So happy to hear also that the PRP has helped. I so far had one round of SCP and two rounds of PRP. So far it has helped lots! Looking like 2 more rounds of PRP.
That's so awesome PRP is helping you too! Have you found that the additional rounds of PRP help more or as much the first? I am thinking of getting another round after things calm down with the virus.
I would definitely say each one has helped me more and more! Pain has gone down lots! You totally should get more. This treatment has been amazing for me! Blessings sister!
Hi Rachael. Interesting vid on LDN, I hope it's working for you. I take it too, for autoimmune, mast cell sensitivity, and a tick borne disease which is a mess, and causes pain. I got to the point that I could hardly walk and now after starting at about 0.5 and working up to 4.5 to 5 mg every evening, and it's working well for me. Take care, going to subscribe and watch your other videos.
@@HealingWithRachael Great! I hope it helps. I'm at my top level 4.5 or 4.75 sometimes, most of the research says that's the optimum amount for most people. Bless ya!
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Glad you're doing a bit better-you do a great job at remembering to stay present in each day! Glad that you'll get to spend some time with Jake :)
Thank you so much Cassie!
Your video made my day! Very happy things are improving. My prayers are always with you and my family prays for you also. Blessings!
Thank you so much Taylor, you are so kind. ❤️️Prayers to you and your family!!
I have more energy with LDN. I have adrenal fatigue. Wishing you the best!!
Glad to hear that you're getting some wins, even if small. I've found gardening/growing things is such a good therapy lol, glad you're enjoying it too. It's really nice when you see bees, butterflies, and other insects making a home and getting food in plants you've grown. I had a few barrels and areas with milkweed too for monarchs and dill for swallowtails :) I had a couple of questions: 1. Any tips for sleeping with the neck brace? When I sleep with the brace it feels like I can't breathe, but if I loosen it, it's not supportive enough. 2. What would you say your first issues were with intercranial hypertension? I know people can be different, but I'm having a hard time finding people actually describing their experience. I had neurology appointments that are now going to be via telephone. When my PCP referred me, one thing they mentioned was intercranial hypertension. I've had a bad year with debilitating headaches and issues that seem to be linked to whatever is causing the headaches. Which leads me to 3. Any advice for going into neuro appointments? I've had one and he was incredibly dismissive and seemed to not know much about EDS... Or care to learn. Thanks and keep your chin up... Your hair is another win, looks great!
Hi Carissa, thanks for your message! I'm glad to hear you've been able to enjoy gardening as well. As for your questions...
1) Sleeping with the brace was rough for me at first, but it actually stopped my seizures for a while when I first got it, so I preferred to wear it regardless of it being really uncomfortable. I seem to like sleeping on my side better with it. Now I'm definitely a lot more used to sleeping in it but I don't know if it will ever feel comfortable haha. I wish I had some better advice/hope you can find something that works for you! You could always try a different collar type as well.
2) As for IH, I have a video that I talk more about my experience with it th-cam.com/video/SrR0CbVQfoA/w-d-xo.html
Sometimes it's tough to distinguish symptoms from conditions like chiari, intracranial hypertension, and cci--because pretty much all 3 can cause the exact same symptoms. Often if you have IH, you will feel worse when laying down, coughing, bending over, etc. Also increased pain/symptoms during thunderstorms or at high altitudes. Those things raise intracranial pressure more.
3) My best advice for going into appointments is being prepared with questions and research that you've done beforehand. Don't be afraid to ask about certain conditions you think you may have and to be tested for them. Some doctors are more receptive to it than others. I hope you can find one that can help you! Wishing you all the best!
I've been clinically diagnosed with hEDS but we meaning me and my doctors think it could actually be cEDS so i'm waiting an appointment with a geneticist. Anyways I started on LDN about 2 months ago and wow it has changed my life! I have many more better days than bad days now, feel like i have more stamina and am able to be more social and attend more pt sessions. Hope it continues to improve your life like it has mine!
I'm so glad the LDN is helping you, Mariah! ❤️️ I definitely think it has made a significant difference for me too.
bummed to hear your appointment was pushed back. glad you're improving on ldn, that's great! stay safe from this virus!
thank you 💚 hope you’re staying safe as well!!
I actually have Naltrexone compounded in my fridge right now I just have to get extra brave and trial it in between food trials I'm doing due to Mast Cell Activation issues. Risking reactions right now are a lot more dangerous if I end up in the hospital so I think I will wait awhile longer. Hope it continues to help you and that your health improves.💗
That completely makes sense! Always better to be safe 💚 Thank you so much!! I hope you’re able to find something that helps you soon.
Thank you😊
So happy to hear also that the PRP has helped. I so far had one round of SCP and two rounds of PRP. So far it has helped lots! Looking like 2 more rounds of PRP.
That's so awesome PRP is helping you too! Have you found that the additional rounds of PRP help more or as much the first? I am thinking of getting another round after things calm down with the virus.
I would definitely say each one has helped me more and more! Pain has gone down lots! You totally should get more. This treatment has been amazing for me! Blessings sister!
Hi Rachael. Interesting vid on LDN, I hope it's working for you. I take it too, for autoimmune, mast cell sensitivity, and a tick borne disease which is a mess, and causes pain. I got to the point that I could hardly walk and now after starting at about 0.5 and working up to 4.5 to 5 mg every evening, and it's working well for me. Take care, going to subscribe and watch your other videos.
I'm glad to hear it's working well for you! I definitely think its helping me as well, I am almost up to about 2mg a day now. :)
@@HealingWithRachael Great! I hope it helps. I'm at my top level 4.5 or 4.75 sometimes, most of the research says that's the optimum amount for most people. Bless ya!
Thanks for the update. Definitely interested in LDN, tho haven't started it yet. Good to hear you've already noticed some improvements.
Thanks Mason! There are some good FB group for LDN that I found a lot of info on.
Your hair is so pretty
Aww thank you so much!!
Welcome to NC!!
Thank you ❤️
I just got LDN in the mail for this condition I will try the up dose
Best of luck with it!