Meliss446

how did they diagnose you with peripheral neuropathy? Was it just based on your symptoms, or did your doctor do testing? I also had numbness/tingling before the POTS. Also, how long did it take you to get in to Dr. Low? I have always been interested in seeing him, as my neurologist is always referencing him, but my doctor told me that he probably wouldn't see me because I too much of a "complicated" case, and that Dr. Low is more interested in "pure" POTS. This was probably 3 years ago that he told me, but I thought he said another time that Dr. Low doesn't really see new patients because he is too busy with research. Has anybody else heard this? Sorry for the tangent, I was just curious.

I didn't gain weight at all, but I have trouble keeping weight on. I have been on florinef for about 4 years now, and am currently on .4 mg. I have been on as high of a dose as .8 mg though, and the most I have weighed in 4 years is 110 lbs. But I am sure it is different for everyone, and like I said, I have problems gaining weight and keeping it on.

I have been in a bad nausea slump for the past few weeks myself. I really can't afford to lose any weight, so it is especially hard. I take Zofran, an anti-nausea that works well for me. It doesn't give me my appetite back or always make the nausea go away, but it helps me ride it out better. I have also been given reglan, but I had a really bad reaction to it. I know it works well for others though. You might want to talk to your doctor about taking an anti-nausea. Another thing for me is making sure I am hydrated, which is not easy when I am nauseated. When I am dehydrated, I get really nauseated, so it is kind of this sick cycle. I have gotten IV fluids when I am really bad which have helped also.

I was wondering how many of you have been to Vanderbilt and if you would suggest it or learned anything from your experience. I have had POTS for four years now, and am on medication to help me at least function somewhat, but I am still pretty limited in energy and have sort of plateaued. In fact, the last 6 months I have sort of been going down hill. I have a great doctor, but I think he is running out of ideas. I am going to go see Dr. Grubb at the end of April. Anyways, I was looking at some information on Vanderbilt and was wondering if anyone had really been helped by going there. On some other forums I have read some mixed reviews of people's experience. So is it worth it? What does the study involve? And would anything come from it, in terms of benefits for me? Also, can you be on meds when you go? Thanks for your imput.

I have been told by doctors that it depends on the severity of your condition. Initially, they thought I would be off medications within a year or so, as mine was post viral and expected to resolve itself. Some doctors also told me I would just "grow out of it". But as the doctors realized that it is pretty severe for me, it seems like they are realizing that it will be longer and isnt resolving after four years. So I think that it depends on your specific situation, but for me I think I will be on meds for a while. My BP is more stable now, but if I accidently forget to take my medicine one morning, I can definitely tell because I get hypotensive.

I have the same problem. If I get any sort of cold or flu that comes around, I am really symptomatic. It isn't rare for me to have a resting HR of 140 when I am sick with a virus, and that is on both digoxin and a beta blocker. I think that it just throws my body off and exacerbates the POTS. It is like we have to deal with double the problems, fighting both the POTS and the virus.

I take a multi vitamin and have been since the doctor suggested it when I was borderline anemic about 4 years ago. I can't say that it has really done wonders for my energy, as I still get fatigued easily, but it at least gives me more vitamins than I could probably get each day. I dont know as if it would completely eradicate the fatigue, but you could probably just try it and see if it does help. But I know what you mean about being tired all the time! And caffeine is definitely a bad solution for POTS. Even chocolate can send my HR high! In fact one doctor I saw told me to not consume any caffeine whatsoever, not even chocolate. But I haven't really found much to help with the fatigue, other than staying within my limits (which are small!) and getting enough sleep.

I tried midodrine with similar BPs and tachycardia over 100 also. I have had low blood pressure, but I am on .4 mg of florinef so it keeps it relatively normal. But my doctors didn't seem to have a problem trying the midodrine with normal BPs. My theory is that the HR is high to maintain the BP, and so a vasoconstricter like midodrine would help the blood vessels constrict more efficiently, and the heart wouldnt have to pump as fast to keep the BP up. But I know supine hypertension is a concern with midodrine. My suggestion would maybe be talking to your doctor about starting a really low dose and monitering your BP. For me, midodrine didnt work and just gave me side affects, but I know it has really helped others. But BP should be monitered with midodrine. Are you bed ridden, or are you able to function a little bit? Because I know you can't take midodrine before you go to bed so that your BP isnt too high, so if you are always in a supine position that may be the concern of your docs.

I also have major problems with nausea and have to take Zofran often to keep it at bay. When I was first diagnosed and was in the hospital, my mom asked the neurologist why I was so constantly nauseated. He said that there is a lot going on, but one thing he related it to is being constantly seasick. He said that the dysautonomia can throw off your blood pressure, which can make you dizzy and lightheaded. And if your equilibrium is thrown off like that, then you can become really nauseated. Anyways, that is one explanation I have heard. I to would like to know the exact physiology behind all these weird symptoms!

I am glad your appointment went so well! How long did it take you to get into Dr. Grubb? I made one in like October and am going to see him at the end of April. It is good to hear that it is worth the trip, because flying can be so exhausting for me. I can't wait to be able to see him and get some additional insight. I wish I could get into him faster, but I know that probably every patient he has says the same thing.

Hey I was wondering if anyone has been on mestinon and it has changed their heart rate dramatically? I started it about a month ago, and had some nausea but was able to titrate up to 60mg four times a day. After being on that dose for over a week, I had a tilt test and passed out and had a hard time recovering. But after that I noticed weird things with my heart rate. I was increasingly dizzy/lightheaded, so I checked my vitals and had a somewhat lower BP and a heart rate in the 50s! I dont think I have ever had a HR that low! I have been on digoxin and atenolol for about four years, and they have only been able to keep my resting HR around 100 bpm. So to suddenly have a HR of like 52 is really strange for me. I also have been so nauseated that I have lost like 4 pounds in the last week, and I really don't have any to lose. I was wondering if anyone has had similar problems. I have seen posts about mestinon and nausea, but I haven't seen anything about a lower HR. The pharmasist thinks it is probably the mestinon, so I am cutting down to 30 mg until I can talk to my neurologist who prescribed it.