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Terriann2Participant
Please read Dr. Diana’s book if possible. It explains so much. You might be experiencing autonomic dysfunction (some type of dysautonomia). The optic swelling could be caused by high intracranial pressure. Diamox is the suggested drug for this. Search this forum for this and you’ll get a lot of good information. Not a lot of activity is generated here nowadays, but Dr. Diana try’s to pop in and give suggestions. She opened the POTSCARE center in Texas and is helping people get their lives back. Check out that website too. Lots of good info. Also, you might want to join a couple of the facebook EDS pages. A couple of really good ones with loads of people very experienced in the trio of EDS, Dysautonomia & MCAS. Good luck to you. Hope you can start feeling better soon.
Terriann2ParticipantThis brings tears to my eyes too. It is so “right on”. We could never explain it to anyone that hasn’t experienced it. I one time tried to explain it to a friend that was addicted to heavy drugs for years and she said it sort of sounded like one of her withdrawal episodes when she felt like ending it all because it was so terrible. Having dealt with hyperPOTS, I relate to every word of this paragraph. If there’s anyway you can get to the POTScare clinic in Texas I’ve heard great things about it. Blessings to you and your fight to regain your life.
TerriannTerriann2ParticipantDr. Diana,
Do you still deal with intracranial pressure? I thought I read that you were on it for 2 years and then were able to come off? Or do some people have to be on it the rest of their lives?Thanks for any input.
Terriann
Terriann2ParticipantDear Floatawhile,
First let me say how sorry I am for all you’ve been thru in your young life. I send my compassion and prayers to you. Have you watched some of Dr. Dinana’s videos? Also, she runs a clinic in Texas called Potscare wher she is now treating patients full time. If you go to that website, Potscare.com she has available to anyone a brochure that you can print out and read on some of the main issues she would tackle first when starting out treatment for dysautonomia. Something you might consider is trying diamox to see if you are dealing with intracranial pressure. Hopefully a doctor might help you out with a trial of this drug. It may help some of your symptoms of chiari and or CCI. It seems you are dealing with so much – but maybe that would be a start. She also offers a book “The Driscoll Theory” that may be helpful. You certainly seem like an incredibly strong young woman. Hopefully Dr. Diana will chime in soon to give you better advice. Take care Floatawhile.Terriann
Terriann2ParticipantCamille, for me clonidine was the best med to reduce symptoms with hyperPOTS. But it has many side effects like depression for example. Most any med has its pros and cons. What is your doctor suggesting? Have you tried the supplements Dr. Diana has produced for dysautonomia issues? Vagusnervesupport.com will give you that information.
Blessings,
TerriannTerriann2ParticipantThat does make sense Dr. Driscoll. From what I’ve read she does say that within 72hrs of stopping the supplements all of her issues come back. What a journey this has been for all of us. Thank you for all of your hard work and dedication to the cause. Blessings to you and your family.
Terriann2ParticipantHi Melissa.
Do you live near Dr. Driscoll? She could probably get to the bottom of some of your problems. If not, is there an autonomic specialist in your area? A cardiologist doesn’t always know a lot about dysautonomia.Start with viewing the videos that are on this website. There is also a brochure on potscare.com that you can download for free that gives you good information to start with. Last but not least, Dr. Driscoll has written a book “The Driscoll Theory” that has an enormous amount of information on how to help yourself. I highly suggest you purchase it if you can. You need to get to the root cause of your autonomic dysfunction. There is hope. I wish you the best.
Terri
May 12, 2017 at 8:12 am in reply to: I'm stunned………10 years of hell and now I know why. I'm hyperpots #6162Terriann2ParticipantDear Valerie,
So many of us know your struggle. You have my prayers and compassion. Now that you know what’s wrong there’s help to be had. HyperPOTS is debilitating. Please read Dr. Diana’s book. She gives solid advice on how to move forward. And her videos are very educational too. I hope you can get the help you need to move forward. Take one day (sometimes hour) at a time. Know there’s others out there that understand. God Bless.
TerriannTerriann2ParticipantHello bobmsh3ll.
I don’t think the digestive enzymes are suppose to help with our POTS. That is what Parasym Plus was made for from my understanding. I haven’t start that supplement yet. Trying to get other problems under control first. But I’m anxious to try.
Best regards
TerriannTerriann2ParticipantWhat lead the doctor to this diagnosis? Is he suffering from debilitating headaches? I sure hope the CCB’s help him get some rest and get back to living a quality of life you both deserve for him to have. Keep us updated.
Terriann2ParticipantI’ve been following along with your posts about your son. Haven’t been able to get into the forum with my regular password and actually had to redo my registration under another name and email address to get back on???
Anyway, I’m rooting for your son and hoping Parasym Plus helps him. I’m not sure why you haven’t received a response from anyone on the forum. Maybe because they’re getting better and living life again! At least I hope so. I have recently purchased this supplement but haven’t started it yet do to a number of reasons. Hopeful to start next week.
Will you keep us updated on your son. Always hate to hear about young people dealing with this atrocious medical condition. As a mama bear I can’t imagine how it has impacted your entire life but please know your in my thoughts and prayers.
Best regards.
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