-
Posts
356 -
Joined
-
Last visited
Content Type
Profiles
Forums
Events
Resources
Physicians
Member Stories
Information Resources
Links
Everything posted by badhbt
-
I had a flare after the flu shot last year, so really nervous as to what this will do to me. Any info appreciated. I am thinking about getting the Johnson and Johnson one. Thank you!
-
I have hyperPOTS and have gone into remission. Just to give you some hope! I have had up to 5 years of remission.
-
I had Occipital neuralgia after my C1-C2 fusion. It was not fun. Mine was intermittent and felt like a zapping, electric feeling with certain neck movements. It would happen randomly without movement too. I have never had a migraine so I don't know how to compare the two. After many injections to try to calm the nerve I consulted with a nutritionist who suggested Lipoic Acid. That has helped me the most. I have been pain free for awhile now. Hope that helped some.
-
I never thought I could give up certain foods either, but when you realize that they mess with your thinking/brain you will avoid them like the plague.
-
How To Ask Your Doctor For A Trial Of Iv Fluids?
badhbt replied to badhbt's topic in Dysautonomia Discussion
Thank you for your comments. My Doctor agreed to a trial of IV fluids. I will keep you posted on whether they help me or not. -
So I had a GI bug over the weekend and I got really dehydrated. My blood pressure was low and my heart rate was really high so I went to urgent care. They ended up giving me 2 liters of IV fluids. The next day I felt great, especially considering the day before. This makes me want to try IV fluids to see if it was a fluke or did it really help me. I have an appointment with my cardiologist tomorrow and I want to try a trial of fluids. Any suggestions on how to ask my Doctor? Any papers/research to help my case? Thanks!
-
Anyone Here On The Gaps Diet? Or Tried It?
badhbt replied to MightyMouse's topic in Dysautonomia Discussion
Wow I didn't know they could test all of that in saliva! Please let us know how the diet goes for you. I am going to attempt it I have never read anything where a Doctor says this problem goes away. Hope it isn't too good to be true.- 15 replies
-
Anyone Here On The Gaps Diet? Or Tried It?
badhbt replied to MightyMouse's topic in Dysautonomia Discussion
I found this question from the question and answer page on the website. This is Dr. Natasha Campbell-Mcbride's answer to the question below. Can you comment on the use of the GAPS diet for P.O.T.S. (Postural Orthostatic Tachycardia Syndrome)? Many GAPS people have POTS: you get lightheaded (almost fainting) when changing position from sitting or lying down to standing up. It is due to imbalance in the autonomic nervous system caused by toxins coming from the gut (in many people their abnormal gut flora produces too much histamine, for example). Work on your gut flora with the GAPS Protocol, and don’t forget to eat lots of animal fats, and this problem will go away. She makes it sound very simple Has anyone tried the diet? It looks pretty hard, but I would try it.- 15 replies
-
What Do People Take To Help Them?!?!
badhbt replied to dizzyallie's topic in Dysautonomia Discussion
I recently broke out my old POTS medications because of a new flare. I had tried Midodrine in the past but it didn't work. I tried this time and it is really helping. I think my symptoms are from low bp....I get the dizzy out of it feeling with crazy vision. It seems to help and I can tell when it wears off in about 4 hours. Just a thought. -
I too was in Katybug's situation. I did the surgery knowing that it would probably not fix my dysautonomia,... which it didn't. I am not unstable anymore, and I don't regret doing the surgery.
-
I would stay away from Effexor. It was horrible getting on it and horrible getting off of it. My Doctor recommended Doxepin if I needed it again.
-
I had a baby in August. During pregnancy and after pregnancy I was able to keep my POTS under control without any medication. A year before my pregnancy I was on the usual...beta blocker, sleep medication, anti depressant. My Doctors did not want to manage the "other" medications so I had to go to a psychiatrist once a month for refills. It really annoyed me because it was pretty much a waste of time. He would ask if I was still having symptoms and he would listen to my quest to find a cause of my dysautonomia. This October I joined a boot camp because I felt good and I thought I could get some weight off before I started back to work. Well I triggered my POTS and sent myself into a relapse. Not as bad as before, but enough that I need to get back on the medications...or try some new ones. So my question is who manages your "other" medications? Thank you!
-
Going gluten free was the only thing that helped my brain fog.
-
I agree with KJay. I think going gluten free was the best thing I have done. I was able to get off of all the medications I was taking.
-
This topic has always interested me because I noticed that my moons on all my fingers went away when I became ill. I even went back on pictures and I had moons on all my fingers. As I got better a year and half later My thumbs were the first to come back. Now they are all slowly coming back except for my pinkies. So weird.
-
Preparing For A Colonoscopy/polyp Surgery With Pots
badhbt replied to lynnie22's topic in Dysautonomia Discussion
I would suggest going in 30 minutes early so they can hydrate you via IV. Movie Prep is not absorbed in the colon so most patients come in dehydrated. I work in this department so if you have any more questions let me know. -
I find your study pretty interesting. I am a Nurse and I work in a outpatient setting. We do diagnostic testing on people that have symptoms, usually GI, but some have other things going on. When i have my patients on the monitor and they sit up and their heart rate spikes....I always think....I bet they have POTS. I have wanted to do exactly what you did to your friends....but I think it would be crossing the line in my field. Very interesting though. When I was in Nursing school and we were studying the heart I would listen to mine. I would walk around and I noticed that mine would increase while standing by a lot. I never was really worried about it because I felt fine. So I know I had POTS before I was diagnosed with POTS and my symptoms hit. I also remember taking care of a patient in nursing school who was on a telemetry unit. Every time she would get out of bed her heart rate would send the alarms ringing and the nurses would run into the room. She would get agitated because she said she needed to go to the bathroom and she felt fine. I am sure she had POTS too.
-
Tell him to hang in there and that he is doing a great job!
-
I will let you know how it goes...5 weeks and counting. I am not on any POTS meds. Ironically I started tapering them off right before I got pregnant.
-
I am 35 weeks pregnant and I have had a pretty easy pregnancy. I have seen a cardiologist and Neurologist, during my pregnancy. They tell me that there is no real evidence that pregnancy counter indicated in POTS patients. Some patients even feel better because you have 50% more blood volume. I am concerned about the delivery part because I know that can cause a relapse. I am like you pretty much living normally and I don't want to go back to the old days! The only suggestions they have given my OB is to make sure I have IV fluids during delivery and to try to keep the ANS calm via epidural/pain medications. Other than that not much we can do until it is over. I can give you an update in 5 weeks Wondering how other people did after delivery...
-
I was wondering Katybug and whoever else was tested for lyme, did you go through IGENEX? Or did you do the Western Blot. Thank you
-
Anoj I would think that Vanderbilt would look at you at all angles. I would make the appointment knowing you can always cancel. I wish I would have made an appointment early on in my illness.
-
Underlying Causes For Pots/treatments
badhbt replied to looneymom's topic in Dysautonomia Discussion
I work in a Gastroenterology unit and there is now some C Diff that can't be treated with antibiotics. We are treating it with stool transplants from family members. I think that tells you how important our normal gut flora is. -
Autoimmune Diseases are a cause of POTS. Inflammation and autoimmune go hand in hand.