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TerriannParticipant
Dear Kristina,
My heart goes out to you. I know what it’s like to have a beautiful life stolen away. I haven’t tried the diamox yet but from everything I’ve read on it you must keep an eye on your co2 levels while on this drug. Hopefully someone will chime in that can give you good advice on what to do next. Please know you’ll be in my thoughts and prayers.
TerriTerriannParticipantThanks for the chronic disease attachment Dr. Diana. I have definitely had many of the symptoms listed. Not at the same time but it seems to change week to week. Month to month. I’m desperately trying to get well enough to make the trip to POTSCARE. I have been approved to come by your staff and have saved up the money to make the trip. I just need to be able to travel that long distance. Your post has prompted me to try the Parasym plus. It’s just scary to try anything new due to bad reactions to so many meds and supplements. There was one post on amazon that said her son landed in the hospital from a bad reaction. Several of us inquired on her son and what happened so we could be more prepared but she did not respond back. But I’ve come this far in my recovery from a damaged vagus nerve. Need to find the strength to continue on my journey to wellness. Fighting to regain my life…….
TerriannParticipantI too have terrible swallowing issues. Mornings are worse for me. And it comes in flares during the day. I’ve been told it’s due to vagus nerve damage. After many doctors nobody has been able to give me any help either. I do take a small amount of klonopin when the flares are severe and it seems to help some. It works on the cns which in turn seems to help with the swallowing. It is labeled an addictive drug so you need close monitoring Talking too much or any stress makes swallowing much worse for me so I have social anxiety along with it. I’m so sorry your son is dealing with this problem. It is hard to explain to people how terrible this symptom can be. I am considering the Parasym plus with hopes of it helping this problem but need to get my digestive issues calmed down before starting since from what I’ve read helps people with bowel paralysis. I have the opposite problem unfortunately. Have you tried this supplement with your son yet?
Best regards
TTerriannParticipantThanks for the feedback. I have just the opposite problem. Loose bowels several times a day so Parasym probably won’t be for me until I can get that under control. Dr. Diana suggested the z/z meds but not much help there. I could only take 1/2 of the Zyrtec a day. Anymore and my heart would start racing. Just started colostrum and it is showing promise with my digestive problem. Please let me know if Parasym starts working better with your pots, brain fog, etc.
Best regards
TTerriannParticipantThank you for your feedback. Much appreciated. Hope you can get your headaches under control. Getting my brain back would be so great!
TerriannParticipantHi Tigertail,
I can’t seem to stay on course with the z/z combo. Taking it every other day right now. Sometimes it makes my heart race or I just feel worse for a couple of hours. One thing for sure is when I get both in I sleep better that night. Not sure why? I’ve tried to reach out through PM to several members of this forum that I have found thru old posts to get their opinions and ideas on how to ease these drugs into my system and also ask about diamox. But the posts don’t seem to go through? On my profile it says I haven’t sent anyone a PM. Kind of frustrating! It would be awesome to hear from senior members that they are doing well on this protocol but maybe they are better and don’t check in anymore? I hear you about bringing your own food. I don’t get out much but to go to the doctors so we always eat our own food. Have you ever heard about the med LDN? It’s being used for people with ms, autoimmune issue etc. But also been helpful for pain and depression (which I have a lot of). It’s an old drug used to help alcoholics withdraw from alcohol at 50mg. This new idea is to take a very low dose (.5 to 4.25) to settle inflammation in your body. I wonder if it might help with this condition? I have tried so many medications that have left me in worse shape than when I started that I’m afraid to try much of anything anymore. I have been approved to go to Potscare in Texas. You have to answer questions and then they get back with you as to if you would be a good candidate. If I could only get a little better to make the trip I’d be there. Dr. Diana’s passion to get to the heart of the problem is so refreshing. Every doctor just wants to get out his/her script pad and treat the symptoms.I hope your stomach problems settle down and you get to feeling better. Let’s hope 2017 brings us both some answers and relief. God bless.
TerriannTerriannParticipantThis might explain why I’m having trouble taking the Z/Z. I’m on overload sympathetic drive also. Weirdly when I’ve taken both meds in a day I sleep much better but the Zyrtec during the day causes racing heart and can bring on full episodes. My mouth is a little dryer too. I’m hoping my body gets used to them eventually. Have you tried the Parasym yet?
TerriannParticipantThanks so much for responding. I was starting to wonder if there were any members still active??? I got brave two days ago and started z/z back up. I only took a half of the Zyrtec and 1 of the Zantac. I am pretty much bedridden – hyper POTS. I responded better this time. But a day at a time with my disfunctional body! I’ll keep you posted. Trying to find some doctor to try the diamox but no luck yet. Have you tried it?
TP.S. So sorry you got the food poisoning. As sick as I am I never eat anything out anymore. Too risky.
December 23, 2016 at 3:39 pm in reply to: Parasym Plus etc. – Could these supplements be for me? #6062TerriannParticipantOne more very interesting thing that occurred for me was that we went to an osteopath that did manipulation all over my body. Nothing like cracking or popping. Barely touched my neck except for a little wave back and forth. I got off the table and literally all of my symptoms were gone! It was crazy. My husband and I went out to dinner and I was fine for three days. On the forth day I bent down to put something in a drawer and felt a little tear at the back of my head. Within hours I was down again. Thats why we went for the prolo because it seemed so obvious it is structural problems on the nerves including the vital vagus one! Went back the following week and doc performed cranial sacral therapy on me after I told him what happened. The next day my bp crashed and I ended up in the hospital. He wouldn’t take me back. He works for the Cleveland clinic so he just didn’t need me for a patient. The prolo has left me with a ton of inflammation at the back of my head and neck I’m anxious to try the diamox but it sounds like I should wait until I can get to you first. I am going to go ahead with the Zantac Zyrtec just to see. Thanks for your time Dr. Driscoll. I hope to be in front of you soon.
December 23, 2016 at 3:05 pm in reply to: Parasym Plus etc. – Could these supplements be for me? #6060TerriannParticipantI just printed the brochure yesterday. My husband went and got the zantac/Zyrtec. Will start out slow. Everything effects me poorly. Approximately 2 years ago i had a neck/back of head injury. Before this I was in excellent health, still running 4 times a week, light weight training and very active. Ended up with spinal fusion and everything went down hill from there. He damaged my thoracic nerve. Scapular dropped within days of the surgery. PT made it worse. The episodes began after therapist did manual traction on my neck. Started out at night a couple hours after i went to sleep and progressed from there. Always have the bowel episodes right after the shaking stopped. Had a upright mri that showed ligament damage in occipital area along with ligament damage in C!/C2. Suggested prolotherapy. I Feel like my nerves are more entrapped from these injections. Doc was very knowledgeable about ANS issues so we continued on with him for longer than we should of. I found a DO near me that knows about dysautonomia and has tried out many drugs on me. Always bad reaction. I did have the blood clotting tests done but I’ll have to look back to see if they covered what you suggested. I’ve had lots of lab work done in this last year all ok except for vit D which I have since gotten my number to 68. Last but not least the new DO did test for autoimmune and I had ssa 1.2 for sjogrens. Ssb no, ana no. No real symptoms other than a little dry but I cry tears and have actually tooo much saliva sometimes??? I’m 58 so doesn’t seem a far stretch to be a little dry. That’s my very shortened version of my miserable last 2 years. So just to be clear you wouldn’t recommend i start the parasym until I get to Texas? As far as the sjogrens the doctor didn’t seem to worked up with this low count and little symptoms.
December 23, 2016 at 11:07 am in reply to: Parasym Plus etc. – Could these supplements be for me? #6056TerriannParticipantNew to this forum. Not sure how to post my own thread so found this one to reply to. I’ve been bedridden for over a year with dysautonomia. Been to doctor after doctor as I know you all have been. Was lucky to get the Dysautonomia dx quickly due to being in the hospital during several terrible episodes. I’m sure they wouldn’t of believed it otherwise because all my test came back normal. But drug after drug has only made me worse. I have been approved to go to the POTS care clinic but am to ill to travel right now. I want to order the Parasym Plus but I see most people have mobility issues and it helps them with bowel movements first thing in the morning. I am just the opposite. I get up at 5 in the morning because I have to go. And sometimes go many times in a day. Not diarrhea but loose stools. What I eat comes out. Will Parasym make my issues worse? I am bed bound to dizziness and nausea along with spiking bp/hr if I try to do anything. I so related to Dr. Diana’s hyper pots video. Can’t explain how bad you feel its so bad! Any words of help will be appreciated. I so want to be able to get on my feet so I can travel to Texas. I live in Ohio.
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