What has helped??????

[daybyday78]

Hi, I'm new on here. Not sure if I'm posting this is the right place but here it goes. I was wondering what you guys have tried as far are medications, herbals, etc. I'm pregnant right now (14 weeks) so I can't take much of anything right now. But I do have an on going problem with low Bp and a high pulse rate. My bp also will drop 20 points when I stand up. Because of this, after doing some research, I was thinking about talking to my dr. about possibly taking an ADHD medication. Have any of you tried this?It's kind of a new thing. If so, has it worked? I have been on Providgil (which is what truck drivers sometimes use to stay awake) I remember it helped for energy that and b-12 shots, but I had another problem with my heart racing and anxiety. Right now just trying a nutritional approach. Thank you for any advice.

 

[Allyson]

Hi and welcome; you may want to look into pots/Oi issues and EDS if youhave low bp and heart issues.

yes b 12 shots are wonderful
i also like magnesium and vitamin c
massage
compression clothing
staying cool in heat
d - ribose was great for muscle aches ; they have stopped now and have jut gone off it and so far so good - no return of aches.
there is a post here on edS




http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehelrs-danlos-syndrome-stretchy-veins.20351/#post-310872
good luck

 

[Allyson]

try this link day byday

http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehelrs-danlos-syndrome-stretchy-veins.20351/#post-310872

 

[Valentijn]

Because of this, after doing some research, I was thinking about talking to my dr. about possibly taking an ADHD medication. Have any of you tried this?It's kind of a new thing. If so, has it worked?

I'm on Strattera, an ADHD medication which is a norepinephrine reuptake inhibitor, and it works very well for normalizing my blood pressure. But I usually didn't have elevated pulse (Postural Orthostatic Tachycardia Syndrome) when standing up, just the drop in blood pressure and/or pulse pressure (Neurally Mediated Hypotension).

In addition to making sure whatever you take is safe for pregnancy, I think it's a really good idea to get blood platelet levels of neurotransmitters tested before taking drugs that will affect those neurotransmitters.

 

[SickOfSickness]

Welcome. On this site, our profiles have spots for most effective treatments and what we're currently trying. So many of us put our best treatments there. Go to profile page then click information and it might be there. If it's not, the person didn't fill it out. Also there are so many threads you can look through.

 

[daybyday78]

I'm on Strattera, an ADHD medication which is a norepinephrine reuptake inhibitor, and it works very well for normalizing my blood pressure. But I usually didn't have elevated pulse (Postural Orthostatic Tachycardia Syndrome) when standing up, just the drop in blood pressure and/or pulse pressure (Neurally Mediated Hypotension).

In addition to making sure whatever you take is safe for pregnancy, I think it's a really good idea to get blood platelet levels of neurotransmitters tested before taking drugs that will affect those neurotransmitters.

Does this help with energy levels? Not sure about my platelet count but I am anemic usually.

 

[Valentijn]

Does this help with energy levels? Not sure about my platelet count but I am anemic usually.

I have no idea what "energy levels" are. It helps me with OI symptoms, which includes the feeling that I need to lay down. It doesn't help with PEM at all.

 

[Seven7]

Vit: Hydorxy B12, Fish Oil, CoQ10, equillibrant.
Sleep: Trazadone to go to stage4 and stay sleep.
Inmune modulator: Imunovir (to raise NK function and T cells), LDN for pain but help my sleep too.
OI: Florinef, salt, Electrolytes, compression socks, Tilt training.

 

[taniaaust1]

With your high pulse rate.. consider that you have a quite good chance of having POTS (postural orthostatic tachycardia syndrome) as the cause of it . POTS is treatable for many in various ways and can often coexist with other forms of dysautonomia eg the sudden drops in the BP. Having coexisting POTS gives many symptoms on top of the ME/CFS ones.

You can home test for POTS..but being pregnant make sure you have someone right by you to grab you, in case testing for it makes you pass out.

I also strongly suggest being pregnant to ask your doctor (many "baby/pregnant women" doctors are familar with the following thing nowdays) for testing to find out if you have MTHFR polymorphism or not. This occurs in 9-18% of the normal healthy population but I suspect it is occurring at much higher rates amongst those who have ME/CFS. It affects the folate (so if you have this you need to be taking more then the average pregnant woman) and the methylation system. I have a disabled child due to having this polymorphism unknown to me at the time,.

Women who are pregnant with this also should be taking baby asprin as a miscarriage prevenative it can cause miscarriages at any time during pregnancy (its a common cause of miscarriages).. So now is a good time to find out if you could have this as a factor of your ME/CFS and should be taking things for it.

 

[jeffrez]

I wouldn't take any prescription meds if I were pregnant (if I were a woman), especially not psych meds. For low BP try sea salt and maybe adding a little licorice. Monitor to make sure you don't go too high.

 

[Allyson]

for anyone reading this thread now the title of the EDS thread i posted above at first re;y has changea nd is now as follows

http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/#post-310872

 

[penny]

Oh dear, just wrote five massive paragraphs and then stupidly reloaded the page and lost it all! Not up to rewriting right now so the super condensed version:

Hi Daybyday,
Just saw this, and wanted to respond since I'm in a similar boat, pregnant (32 weeks now) with POTS. I've been keeping track of my pregnancy, including some details about the supplements and meds I take in this thread: http://forums.phoenixrising.me/index.php?threads/me-and-pregnancy-one-case-study.20445/

And before I started that, I also asked the community about the combo of pregnancy and pots: http://forums.phoenixrising.me/index.php?threads/possibly-pregnant-and-super-potsy.19112/

The super quick version is that POTS is just worse during early pregnancy (which for me was about 4 months), and there aren't a lot of treatment options (normal meds are pretty much out according to the cardiologist I saw), so salt/water loading and compression hose (and being horizontal as much as possible), were about all (btw I think licorice is on the off list for pregnancy too). Hopefully you're through the worst by now, or at least approaching the point where things improve naturally because your blood volume increases.

And just my 2c but I doubt most doctors will be very supportive of you trying a stimulant med during pregnancy. I've seen online accounts of narcoleptic patients getting approval because the risk to the baby (from passing out and falling, wrecking, etc.) was much greater than the potential damage of the meds, but it seems to be generally regarded as a no go during pregnancy.

Oh, and do talk to your doctor about anything you are doing or trying, and there's also this resource: http://www.mothertobabyca.org/about/ you can email them a list of any meds or supplements that you are taking or thinking about taking and they will summarize current research on the effect on the fetus. It's free (I think to anyone and everyone) and my doctor had me contact them and then bring in their information to him.

Let me know if you have any specific questions either via messages or on a thread. Good luck!