Jenn202

All I am wondering is if the people on Mestinon on this board have had improved blood volume..... I have a complex history and there is much more too it than that I dont want to take Meds prescribed by dr Grubb. Anyway if anyone has any experiences I would appreciate it,,,, Thanks!

Hi Guys - I am in a dilema about taking POTS meds and I have been this whole year and trying not to take any more drugs so I thought I would get your opinions: My MAIN problem is blood volume and fluid/electrolite balance issues. Dr Grubb recommended Mestinon as a first trial..... I have not taken it b/c I am not sure it would do anything for Blood Volume. I have a Mild form of POTS but its not enough that is causes me problems where I feel I need meds to control. I guess Grubb's theory was that Mestinon acts as a vasodilator and would help restrict my Veins... My Question is: For those of you taking Mestinon have you noticed improved Blood Volume and less dehydrayion issues? Thanks to anyone who can help

I'm so sorry you feel so badly. Do you think you picked up a virus of some sort that could be making your symptoms worse? I will keep good thoughts that you will be able to finish up your paper...... Feel better soon!

Is there any way they can set up IV fluids at home for you as needed? I have done this for the past year and I can tell you it has been a lifesaver for me. I usuallu need much more than 2 bags to get my overall volune up...it usually take a week on a bag of saline a day to do the trick. I hope you feel better soon. I know how hard a virus can take you down and dehydrate you.... Take Care.

I have always wondered what the difference was between a cardiologist, a Dr specializing in Dysautonomia and a Vascular Dr?? That is one Dr I have not seen and wonder if I should bring this up at my next appt with my POTS Dr... If you coukd explain in more detain what Vascular probems entail I would really appreciate it... Thanks

Ernie - I feel so badly that you have had this secret for so long..... Please know we all will support you through this no matter what. The power of words are so strong, and its one thing I truly dislike about the medical community...they seem to disreguard what they put out there in words..... Please stay strong......know you have lots of support here on this forum.

I use a Total Gym and find it works best for me....

I am so sad to sign on a read this terrible news. Please know you will be in my thoughts and prayers..... Take Good care of yourself during this difficult time.

I have never had any benefit whatsoever from alcohol... It actually has made problems MUCH worse for me especially in the years that I did not know what was wrong and so did not know to avoid alcohol. I cant imagine it could ever do anything good for you since it effects your nervous system, dialates your blood vessels, and dehydrates you... not a good recipe for me.

The only problem I have ever had wearing compression hose is when it is hot out.... Other than that I have never had a reaction from taking them off, of weraing/not weraing them... Sometimes I go weeks without wearing them and some daus I use my 30/40 others my 20/30 I wear the thigh high and they work well for me.

You could have a problem with candida. I personally will not eat sugar..or very little b/c if fungal / yeast build up. The symptoms of that can be neurological and can mimic many POTS symptoms.... Do you take a good brand of acidophillus? That can help you replace the good bacteria in your gut.... also sticking to nonprocessed whole foods is usually best. Hope you feel better

Have a safe trip and I hope that you gets lots of info from dr Grubb! Take Care

Thanks Gina! Looks interesting. Is there a recipe as to how to eat them or something to put them in?

Were you able to take a course or 2 of Antibiotics to make sure that the bronchitis is completely gone? I know there is a strain this season that is particularly mean and hard to get rid of... I have been on 3 rounds of abx so far for mine... I think I am finally in the home stretch ( well never say never!! LOL ) I hope you feel better soon!

I dont take baths b/c a hot bath or Hot tub can activate my Lyme disease, but when I take a hot shower I definetly come out of it feeling not so great and I can see the blood has left my face...then a few minuted of being out , the blood will return. So I knoe it does something to trigger the POTS stuff...... Just one more fun thing huh??!!

If your current POTS Dr is willing to refer you I believe it would be quicker to get in. I got into Mayo in 4 months upon my Dr referral. Also a tip for Mayo IF you end up going there: You can get in much quicker if you start by having an appt with one of the GP's...... They will coordinate your specialists and tests from there..... I was able to get in to the autonomic clinic right away b/c of this. Good Luck

Have you considered purchasing a Pilates Performer or Total Gym? Both of these are great machines and you can perform MANY pilates excersises at your own level/pace... I Know Nina owns a Performer, and I own a Total Gym..... I love both of these machines and it was well worth the investment......

I was supposed to have a blood volume test many times , but kept renegging on it b/c my POTS Dr said there were risks to having it done ..something about the dye used. Is this a Newer test than the one I am describing? And if not how many of you have had this test and were advised about the possible risks, and what did your Dr's think of it? Thanks!

Steph - I agree that the show portrays all the illnesses featured ending in this " happy I'm all better ending" I highly doubt that this girl is home free for the rest of her life b/c of an operation.... just not that simple... They actually had a guy with an Aids diagnoses end in an upbeat tempo like he is going to be ok..... I guess the point of the show is just documenting strange illnesses , BUT I wish they did portray them in a more realistic light......

I remember that the girl went to the "chiari Institute" on Long Island NY and was seen by a D Borlangese ( sp?).. Just in case anyone here isnterested in pursuing more info.

I saw it! I was going to post about it this morning! I had a cold so I was up late and I could not believe when the gorl started tellign about her symptoms.... I'm so glad that it was documented on the show...very interesting!

If you read up on aspertame you will find that once it is broken down in your body it actually converts to formeldahyde... pretty scary

Hi Persephone - I also did not get to read your original post but just wanted to add that my thoughts are with you and I have also sensed your frustration. You are a very determined person, and I admire you for all you have accomplished despite your illness. I know for myself I have had to make some pretty major life changes in order to get well. It took a while to "accept" that I could not do the things I had planned in my early 20's to do. For myself, at 34, I have realized that I do NOT do well under pressure and stress. To the point my health deteriorates rapidly.... So I have had to cut out a lot of the daily stressors that a fully healthy person is able to handle.... For example Instead of going back to a traditional full time school to finish my degree I have chosen to pursue my degree online with only a week residency on campus...... I make sure that if I have a lot of upcomming events that I plan accordingly and take a day "off" in between to veg out a bit. Or take the day after to do so. These are the things for me that have slowly but surely given me better health and a much better quality of life...and in the process I have found that I physically feel better and then can just naturally do more...... .... and when I have set backs I have to try and accept them and rest and not fight it. Its not easy believe me I know. Please do not think I am preacing to you..... I just wanted to share what has worked for me so far... and I agree with the others that having a couselor to talk to can do wonders to help . Take Care of yourself and I am senidng good thoughts your way!

I take Celtic sea salt found in Health food stores rather then sodium chloride b/c as Gena posted they are full of good minerals as well...its a complete salt not just processed into the Sodium Chloride......

I didnt read the part where you are sick. Gosh everyone ias this cold lately! Anyway I have flown many times with a cold... Its not the most fun I ever had but I made it through with my nasal spray...also have you tried "Ocean"? its a saline nasal spray that helps keep your sinuses moist.... You can get it in most drug stores.....CVS, Rite Aid, Walgreens etc... I really hope you feel better.