jkapache

Hi,

When you have these tremors, do you ever get up and walk around a bit? I get this sometimes, specially approaching my period, and when I get up and walk around it slowly fades, my dr sort of diagnosed me with Restless Leg Syndrome. This summer I got it alot, my dr took me off my Neuronton and tried Lyrica(to help with my POTS symptoms), this made it worse- I had it every night. Now that I am back on the Gabapentin/Neuronton it is better..... I guess the Gab. is used to treat the RLS sometimes. I am not sure that this is what you have, but just thught I'd share my experince! ~Jess

sorry i cant be of any help to you, about the GNs. I have heard of them- in fact a friend of the family that had cancer was taking them, he said they helped a bit, but he went down hill in about 2months and was gone

well i have been on the florinef .1 mg 1 time a day- neuro increased it to two times a day- but then a week later when i was at cardiologist he started me on midodrine 5 mg 2 times a day( i was complaining that i still am so fatigued- and that that is my worst symptom- he said that maybe we should try treating the pots more agressivly- as there isnt much to do for the fatigue)- and said to only take florinef one time a day again. i have been on the midodrine for 6 days now- and when i was at rhuemotlogists and he did my blood pressure- it was 128- witch was a bit higher- so he said that the midodrine must be working- in terms of raising my blood pressure- however i really have not noticed a difference in the way i feel- aside from the wonderful chills. from the sounds of it, becuase the midodrine is a short living med- it seems like it should maybe be doing something by now? i dont know- but i have to go and see my nuero again in a week- and she will NOT be happy that the cardio put me on this- more because she has an ego and wants to be in control- but i dont want to be on meds if they are not helping- but i really want to give it a fair shot- as my neuro is sometimes stingy on letting me try new things! and i know that it wont be a pretty visit when she sees the new med listed- any ideas on how to make that go well? maybe i should spike her morning coffee!! thanks!

I WAS AT MY RHUEMOTOLOGIST TODAY AND HE WAS LISTENING TO MY HEART AND ASKED IF ANYONE EVER TOLD ME I HAD A HEART MURMUR? NO ONE HAD! IS THIS SOMETHING COMMON IN PPL WITH POTS? HE SAID ALOT OF PPL HAVE THEM, AND IT ISNT A BIG DEAL- HE WENT ON TO TELL ME ABOUT MINE- BUT CUT HIM SELF OFF, AND LATER SAID HE WAS SENDING ME FOR AN ECHOCARDIOGRAM. JUST CURIOSE IF MURMURS ARE COMMON WITH POTS? THANKS!

BREN- THANKS FOR THE REPLY! I AM HAPPY THE DR IS WILLING TO CHECK OUT EVERYTHING. I ACTUALLY AM ON NEXIUM TOO. BAD ACID AND REGERGATATION- ALTHOUGH NOT SURE HOW MUCH IT IS HELPING/ OR SUPPOSE TO BE HELPING THE REGERG. MY DR ISNT SURE IF THE POTS HAS ANYTHING TO DO WITH THE RAYNAUDS OR NOT..... GUESS WE MIGHT FIND OUT WITH ALL THE TESTS HE ORDERED!

It's common for a person to have both, that is why the doctor is checking you for scleraderma. My father in law has had both for years and has tried many different dreatments. He doesn't have POTS though, so I don't know how that would effect those conditions. He has had to have his esophagus stretched multiple times due to the scleraderma. Being on nexium has helped him a great deal.

Scleraderma causes the skin to become tight and nonflexible. It can also affect the internal organs and become life threatening if that happens. My father in law has the chronic kind and has had it for at least 30 years, along with the raynauds.

MY RHUEMATOLOGIST WHOM DOESNT KNOW ANYTHING ABOUT POTS, BUT REFERRED ME TO MY POTS DR, IS RUNNING SEVERAL TESTS TO RULE SCLERODERMA OUT. HE DOESNT THINK THAT I HAVE IT, BUT BECAUSE I HAVE RAYNAUDS PHENOMENA AND ESOPHGEAL DYSMOTILITY- TWO 'SIGNS OR SYMPTOMS' HE WANTS TO RULE IT OUT. HAS ANYONE ELSE EVER HEARD OF THIS BEFORE? I WENT TO HIM TO SEE IF THERE WAS ANYTHING THAT I COULD DO FOR MY RAYNAUNDS.... LOOKS LIKE I MIGHT HAVE JUST OPENED UP ANOTHER CAN OF WORMS.... BUT THATS OK- IF IM GONNA HAVE ALL THIS STUFF- THEN I MID AS WELL HAVE A NAME- AND RULE EVERYTHING OUT!

Hi! I am sorry to hear that you dont have alot of umph- that is how i feel! I jsut saw my EP and he is TRYing to help me with Midrodrine- but that isnt the point. I replied to say that I think that if I where in your position that I would try the EP, what do you have to lose? Another appt and more money yes. But who knows- fresh eyes are sometimes the best. My EP has helped me quite a bit when my neuro has been bull headed and straight- sometimes ya just need to try something else from SOMEONE else! Good luck with your decision, but what do you have to lose at the end of the day? Maybe this dr could help a bit.

thanks for posting! The links or the one I looked at about the mother/daughter was VERY good! Thanks! Its a great example of the 'never give up' attitude!

SAt am I woke up really hot and feverish..... with a terriably sore throat, my body ached- even my fingers! My ears hurt on occasion, my stomach feels puniy..... just feels like the flu. my temp has ranged from 95.5 - 97.6. My mom is insisting I go to a reg GP. SO she got me an appt tommorow- but its with a nurse practitioner... and not my POTS dr. Should I even bother going, if it was just that I had the flu it wouldnt be a big deal, but the whole POTS thing complictates it, because I have someof these symptoms regardless! So the ? is, do I go or not?!

well i was to the dr and asked if it was crucial, and she said no- just as long as it is in the where abouts. The slight difference in time that I mentioned was not what she felt big enough to cause me to not feel well..... so who knows!

Thank you all so much for you help! It was Dr. Bolognese.. I googled him and that was def the dr. My friend means well, but she sometimes forgets important details! And thinks that I am not getting enought from my drs.... but from the sounds of it- Im getting as much as everyone else........ POTS is what it is and it isnt going to change! I am very curiouse about this Chiari stuff...................

Well I never thought alot about it, but I notice that if I dont take it at the same time I feel as if I have not taken it! Who knows, maybe it is just a 'bad' day......... but on a 'good' day I like the effects! and now I want them all the time!!

futurehope, that is a good point, I am always so tired, but that is something to think about... and see if less makes a difference, I always think I am helping myself by occasionally sleeping an extra 1/2 hr......... will try with out! Thanks!

Only been on it for about 3 weeks. But noticed that when I take it every day at 5 am and get up at 7 30 . This seems to be good- have alot more energy ect. But when I sleep thru my alarm at 5- and take it maybe around 6 and get up at 7 30 or 8- I never feel the effects of taking it! I know some stuff you have to take it at the same time or it doesnt work... but my dr never said anything about that to me......

A friend of mine saw on TV about a year ago a dr at JH that treated a girl that had POTS.. turned out she had a tumor on her brain, they removed it and I believe her symptoms are undercontrol or gone (my friend couldnt remember the whole story!). But I was just wondering if anyone knew the name or any info on this dr. I tried to look it up myself- but I am not familiar w/ JH and I dont even know what kind of Dr this was! Anyhow..... if anyone knows anything please let me know! THANKS!!

I am Extremely tired as it is, so I REALLY hope that the NExium doesnt make me tired! I am curiosue to see if it will help with the regerjatating. How long does it usally take to get in the system?

Hi!

Im glad that things are being diagnosed for you! I just wanted to say that my dr has me on Neuronton for pain, it does help- however I am now at the max dose and am not finding it to be wonderful.... but I have been on it for a year. When I went off it to try Lyrica- then I relized how much it helped! But now the Flornef seems to be helping a bit more..... anyhow just wanted to let ya know that it might be something that could help you- it made a HUGE dif in the beg.

Ok, so after my uper endoscopy I was suppose to have another test where they put the tubes up your nose and check your swallowing and eshogus reflex- or something?? Well dr decided not to do it thinks it just that my esopugus is swollen ect. He gave me nextium for 1 month to see if it gets better- if not will have to do the above test- maybe the 'flap' that keeps the food down isnt weak and not working properly- then we would have to talk about surgery ect. That word freaks me out- I hate the thought! But what 'disease/illness' could be wrong with my eshogus then? I was just waking up from the sedation... so I couldnt focus enought to really ask- and he didnt go into much detail. But does Nextium help with regerjatation too? That is sort of my main problem- the heart burn isnt THAT bad.... uhh- maybe I should have just kept my mouth shut about these problems- and went on with life!! Sorry for the ODD question!!

Had an upper endoscopy today, and dr said that my esophugus was very raw, red, and inflamed... starting me on Nexium 2 times a day. In hopes to reduce swelling, and maybe it will help with my regerjatating.... What are your experinces with it? Side effects? Any info is appreciated!

I recently read that those being sedated should be extra careful........... however I cant find the article now, was it on this site?? I have to go this week for a scope, and I was told to be sure to tell them to be careful, but it would be helful to a) know why have it in writing! Thanks!!

I am having motility tests done at the moment... think esophageal dysmotility as I regergatate most of my food.... bread is the hardest, so that doesnt happen as much but most other foods it does. Good luck, talk to your dr about it!

Sounds alot like Raynauds phenomena to me too. I was diagnosed not to long ago- and the tingling and Extremely cold feet are my biggest symptoms from it- agian more annoying then anything! Go to ur dr tho. Good luck!

MY family and friends mean well, and are STARTING to get the idea of me being sick... and what POTS actaully is, and does to the body. However new ppl that I meet- and friends of friends ask about it, and I try to explain- however most automatically go off and assume there own things- that is is a problem with my heart- or the blood, or muscles- but they dont really understand what POTS REALLY is- they just start asumming. What is a quick easy way of explaining POTS so they understand and start to spread true things instead of these off the wall ideas... some of them are as wacky as POTS! I totally realize that rumors are going to be spread ect... but I would at least like to sort of be able to explain it to the ppl that actually do want to learn! I get it- its just explaining it is a tuff one sometimes... specaily when I am trying to deal with memory loss and brain fog anyhow!

Well I have no advice/ suggestions, just wanted to say that I am sorry and will keep her and her family in my prayers. Sounds like a very stressful situation for all involeved.

Corina, it is very interesting that you say you gained weight, I was going to ask about that! I am trying to lose it, and do not want to have to go thru this process again... but at the same time I want to feel better... guess its a losing battle! Thanks for the reply!