gelann

Please let us know if the apple cider vingegar helps. My daughter also has gastroparesis and huge temperature fluctuations. I will have to try to get her to try some. She vomits daily and has her temps can go from 90 to 104 in a very short time. Good luck to you. Gelann

Hi Lizzie, Have you ever heard of cyclic vomiting? My daughter has gastroparesis, so she vomits quite a lot. She also has dysautonomia. She saw Dr. Grubb back in November and as he asked he questions he brought up cyclic vomiting--a continuous cycle of vomiting. She doesn't have that but I remember reading about it on the internet. Maybe you can do a search for that and she if the criteria fits. Good luck to you. Gelann

Has anyone been on cymbalta? Did it help? Any unusual side effects.

My daughter sees Dr. Felix Rogers in Trenton, MI who has helped her. He is a cardiologist. She just saw Dr. Grubb in Ohio who is trying to help with her temperature issues.

I believe that Pyridostigmine is the same as mestinon and is mentioned in Dr. Grubb's article that is noted here earlier.

When my daughter was first diagnosed she was passing out all of the time. The doctor tried differnet meds and they even made her pass out sitting down. Finally they hit upon midodrine (proamtine) which has done miracles. She is back work and has returned to driving. Good luck to you.

We also love artichokes. I stuff them with garlic, chopped parsley, either grated or chunks of parmesan regiono cheese, salt and pepper and sprinkle extra virgin olive oil on them. place them in a pot with water half way up the artichoke. Cook until tender. Be sure to leave lid on so they steam. Test by tasting the leaves when they are done. Be sure to sprinkle a little lemon juice on them so they do not darken. Enjoy.

Hello, I am so glad to hear that you had a positive experience with Dr. Grubb. May I ask what meds he put you on or does he try to stay away from medicine and only work with the workout. My daughter 23, has an appt with him in November. Did he do any tests? I am concerned about insurance and if they would cover the office visit or any tests that he orders. Thanks. Gelann

A doctor on site to answer questions.

My daughter first started getting these fevers in 1999 and saw so many specialists looking for some type of infection. Everything would come back negative. Her stomach problems started in 2001--gastroparesis and in 2005 she started passing out, enlarged pupils, extremely tired--dysautonomia. Now her cardio dr. has finally put this all together it is part of the dysautonomia and he wants her to see Dr. Grubb. She has an appt in November. As I understand that this is the normal time to get to see him. Thanks to everyone who responded. Gelann

Does any one hear have a temperature that can vary from 93 for example to 106? I know the autonomic system affects temperatures but I never find any more information than that on it. If someone does have this problem, have you found any way to help treat it. My daughter is 23 has been diagnosed with dysautonomia, first they called it vasovagal syncope, then nmh. I guess its all in the same family. She is 104 degrees and feels awful today. Thanks. Gelann

I was wondering if anyone has read Dr. Grubb's book. Syncope: Mechanisms and mangagment. The cardiologist that my daughter is seeing made her an appt with him because she has abnormal fevrs. Very high or very low. 106 fluctuating to 93. He mentioned that there is a chapter on this. I have yet to find the book. Thanks Gelann

Excuse me for jumping in, Rhonda did you go to U of M mean University of Michigan or is there another u of M. Who did you see there? And I gather that you would not recommend them? Gelina

Where is the study done? At a university? do they need more volunteers? Gelann

Hi I hope it went really well. Where was the seminar? Does he have a listing a seminars coming up. I cant wait to hear what you learned. Gelann

Hello, my daughter who has been diagnosed with NCS can easily range in one day from 90.3 to 105. When her temps are low her hands and feet are like ice but when they are high-she doesnt actually feel hot to the touch. But she feels terrible.

I agree with you that he sounds like a great neurologist. My daughter who has NMH was diagnosed after mentioning the large pupils and fainting to her PCP recently She has had a history of temperature variations (fevers and recently extremely low temps) since '99. No one could figure this out. They kept looking for an infection. She is 23, close to your age. I hope your face pain gets better. Good luck to you.

My daughter also has been having blurriness or her eyes. We went to the opthmologist and she checked her eyes out and said they looked fine. Her PUPILS do act strangely on many occasions. They are huge when they should be small. Her eyes are very sensitive to light also.

Hi Ernie, Thank you for replying. Is there a "proper name" for them or are they just salt tablets or does it have a technical name. Thank you. Gelann

I have seen many posts that different people take salt tablets. Where do I find them? I have been looking? thanks! And if I find them how many should a person take? My dauaghter has NCS.

I am amazed to read Dr. Grubb's name mentioned on several posts. Is this the person to see? My daughter has vasovagal syncope. How many of you have seen Dr. Grubb and has he treated your symptoms effectively? Does he take patients from out of state? How long does it take to get an appointment with him. My daughter is only seeing her primary care doctor so far who diagnosed this but I feel that she should see a "specialist" in this field. She is 23 and has gotten worse on meds. Tried zoloft and now timolol and just passed out last night and probably hurt her hand. (She wouldn't go to ER--just iced it. We will see this morning. Hope everyone is having a good day. Gelann

I live in the Detroit Metro area. I saw three doctors listed there and want to be sure that they are good before we go.

I was wondering how the physicians that are listed get posted. Do patients recommend each individual doctor or do the doctors asked to be put on this site. I was mainly wondering how reliable the list is. Any input would be appreciated. Thanks.

Has anyone seen Dr. Felix Rogers in Trenton, MI or seen a specialist at U of Michigan?? Did they help? For Pots or NCS? Thanks.

We live in Michigan. Detroit metro area and I am wondering if there are any doctors anyone would recommend in this area that specialize in NCS? Thanks. Gelann