gomindy21

I know that this was a while ago, but I wanted to see what the results of you taking these supplements, Nauthiz. So if you are still use the forum, it would be great to hear

Great to hear that there may be some hope! Keep us tuned in to how this things are going with this over the next few weeks!

Thanks for posting! I hope that it works long term for you. I had wondered about ginseng myself, but have been afraid of trying it.

Awesome! Great to finally hear that someone is recovering or has recovered. Are you standing for two hours straight, or is the standing spread out throughout the day?

Does anyone else have this problem? I experience a lot of dizziness (especially lately, I don't know why..) and when it's this bad any quick head movements make me worse..Car rides are difficult..It just seems like I have days where any quick movements really throw me off. Does this make sense?

I get yucky feeling when I'm riding in a car. It doesn't seem so bad when I'm the one driving for some reason. But yes, since my pots got worse I did develop motion sensitivity.

Does anyone else have this problem? I experience a lot of dizziness (especially lately, I don't know why..) and when it's this bad any quick head movements make me worse..Car rides are difficult..It just seems like I have days where any quick movements really throw me off. Does this make sense?

I get yucky feeling when I'm riding in a car. It doesn't seem so bad when I'm the one driving for some reason. But yes, since my pots got worse I did develop motion sensitivity.

I'm sorry you are going through so much yuckiness! Hang in there and I hope you start feeling better soon!

Thanks for posting this! When I find out more about exactly what kind of POTS and EDS I have, I will be very interested in trying something like this.

My blood pressure is also low while laying now. Usually in the 90/65 range. It very rarely goes over 100 unless I'm having a good day. I'm dizzy while I'm laying down too, so I think that might be why. My doctor said my blood pressure should be normal and my symptoms should go away when I lay down because there is no gravity? That doesn't seem to be the case with me though..so I honestly have no idea what to think. :-/ It does happen though.

There seems to be a lot of unknowns with our illness doesn't it! I'm so glad that there are forums like this so we can all colaborate. Thanks for sharing

THanks, Maxine! The nurse Practicioner from Dr. Grubb's office thinks I have a type of EDS, and I'm just going down the road of trying find a geneticist/ dr., etc. I'm sure Dr. Lavallee is pretty understanding and knowledgeable since he has EDS. THanks again!

I am currently having the low blood pressure issues. I am hoping to find out more when I see Dr. Grubb in January. I know it can be very frustrating! I have posted about the low blood pressure. As I learn I will try to pass on info to you

Yes, if does feel good when you finally meet someone who understands and is patient. Who is your EDS doctor?

I have had panic/POTs problems. I would first suggest talking to your specialist/physician, etc. Currently I am undergoing progressive relaxation therapy. My therapist has actually worked with Dr. Grubb on some research with this a while ago. I've only started it this week, and it has helped out tremendously with calming my system down. It actually is a series of muscle constrictions/releases and breathing. So, if you are not big on medicines, this might be something that is helpful.

gomindy,

My blood pressure drops while lying down as well. Seems it should be the opposite doesn't it.. My blood pressure also rises a bit soon after I sit or attempt to stand. I can't stand long enough to see what happens after a few minutes- to see if it will level out or not.

My only diagnosis right now is POTS, but I'm going to see an endocrinologist next week to test for adrenal failure. We will see..

you're not alone

Maisie

Maisie 87, As I was looking up what causes low blood pressure, I did notice that adrenal problems are a possible cause. I was seeing a naturopath before I knew I had pots who had given me a supplement for my adrenals because my coritsol levels were low. Unfortunately my body didn't agree with some of the ingredients in the supplement(ginseng, niacin). Let me know how your appointment goes and if he suggests anything to take. I hope your appointment goes well

I have POTS/OI (orthostatic intolerance) and have low blood pressure most of the time. It's definitely a dysautonomia thing. What does your HR do when you're lying down? My HR would go into the 30s lying down so I ended up with a pacemaker, but I also have heart issues. Lying down, my BP is usually about 90/65 and my HR is always 60 now with the pacer. When I stand, my BP is usually about 70/55 with a HR of 130. Ugh. Low BP can make you feel really nasty, and very fatigued.

Potsgirl, my heart rate sometimes drops while laying down, but occasionally it rises to the 70-90's while my blood pressure is still low.Not quite as high as yours gets when laying. That must feel very bad when your hr gets that high with low bp. And yes, I think the feelings I get while my blood pressure is low is a worse pain then when my heart is racing.

Yes I too have very low blood pressure after lying in bed all night and it is similar to yours. I think it is why I find getting up do hard in the morning and why I am often dizzy even lying in bed sometimes. I also Have ME and I think this is why I have the low blood pressure. My pulse rises with standing though dramatically.

Thank you for replying. I wasn't sure if this was a POTS thing or not. It's been concerning me because I know that really low blood pressure is not good for the body and I don't get to see Dr. Grubb until January. What is ME?

My symptom seem to change all of the time, but the one symptom that has been consistent for a few weeks is that the longer I lay down the lower my blood pressure gets, and occasionally my heart rate will get really low as well(lowest 51). Going to sleep is very difficult because my blood pressure likes to drop to anywhere between 78/53 to 98/48 when laying and that's almost every night lately. When I am up during the day often my blood pressure goes up with my heart rate. Anyone else experience the low blood pressure when laying issues and if so, what kind of POTS or other(EDS, etc.) do you have?

This is encouraging! Thanks for posting this!

I have two disc bulges and one herniated disc. I also have slight scoliosis. The chiropractor has really helped with the pain.

A geneticist can diagnose EDS.

I just started both this weekend and already have noticed an improvement! I posted a bit about them in the topic i started about licorice root.

Thanks for letting me know! I'll read your other post!

Did you ever try the horse chestnut, or just the butcher's broom?

Thanks for sharing this. I have a friend who has MS. I will gladly share this with her!

My level was at 19. I started taking a vitamin D3 spray. Will be interested to see what happens in a few weeks.

I have that quite often. I use to have a very strong pulse until the last couple of months when my POTs progressed.