ajw4790

Sorry about your migraines!

Ibuprofen thins your blood, which could cause more of the fainty/syncope symptoms. Normally as a preventative you would want to try something like a beta blocker, and that normally wouldn't take a migraine dr. to prescribe. Also, have you tried to alter your periods with birth control? I was just thinking it may help. Also, have you tried triptans (migraine meds)?

Hope you find something that can work for you!!!

Sounds like they were quick and ready to respond! That is a good feeling to have! Much better than the opposite!

It sounds like it would have been rough, and then continue with the meeting! Wow!

Sorry for being kinda nosy, but what causes the convulsions, is it like a seizure?

That sounds awful! I wonder what kind of neuromuscular thing they are thinking?

I hope they are able to find more answers soon!

Morgan,

I hope I didn't offend you or ask to many questions. I didn't mean to. I continue to be amazed at how awful these drs. can treat people.

I wonder if it is kinda like what has been discussed on the board before, and that they don't know what to do, so they get this attitude?

Maybe tell them that if they can not help you further if they can refer you to someone who can? Or see if they can consult with other drs?

Do you have any drs that understand at all where you are coming from? that could help you?

Also, I wonder if anything like a medical case manager could help you out at all to find resources that may help you?

I don't know, I was just trying to brainstorm ideas. I am sure you have probably asked every question in the book a million times!!!

What is an MDA dr. and PP?

I wish you better luck in the future!

I am not sure. But, I would think with the increased pressure due to the sinus inflammation that a migraine could result. I know people can get sinus headaches, so if you are prone to migraines it makes sense. So, especially if they started around the onset if the sinusitis then hopefully the migraines will get better as the sinusitis gets better.

Also, they must think there is significant inflammation if you were given predinsone for swelling, so I would think that may lead to migraines.

Hope it gets better!

I forgot... Where do you live? Maybe it is just to a point where you have to start seeing a different group of drs. I ran into that. I had to get away from a certain health system. It just wasn't working for me! Just thought I would check!

That is crazy that they acted like that! For one pacemaker= heart problem. Then, to laugh at you, that is not good bedside manner!

For the pacemaker supposed to catch anything above 180, what does that mean it records it, or that it won't allow your heart past that? What info are they waiting to get from the pacemaker? I wonder why they are relying on the pacemaker? And he won't see you for another 6 months? That is crazy! It seems as though your cardio. system is having some issues that need to be addressed... ideally by a cardiologist. I wonder why they are so uncaring about it? Does your pacemaker shock you back if you go into vtach for a while at a high enough rate? So, then they think they don't have to wory about it?

It really just seems they could help you some more! Can you try another cardiologist? Maybe even a different PCP? It just doesn't seem like they are working to help you! And it sounds like you have visible and justifiable diagnoses from tests etc. So, there shouldn't be that question...

Are you on beta blockers?

Good luck! I hope it gets better!

Good luck with everything! It sounds like it must be awful!

I hope that they find the answer to the lung pain, and are able to help you soon!

Hopefully the current antibiotics will kick the infection out soon!!!

Wishing you luck!!!

Thanks for the info!!!

I continue to crack up on the scientific use of "it wasn't pointy"! That is very impressive dr. lingo!

I have to say "beaked" is also an interesting term, although probably more appropriate than pointy!

Sorry, I don't really have any of the symptoms you described, but they sound awful! I do sometimes get dizzy lying down...

For the rubberband around your waist thing I was wondering if it is something with your diaghram and maybe it having some difficulty working in supine? Probably a weird stretch of trying to reason it out?

I wish you luck with the new dr.!!!

Yeah, if it is scalp tingling it is probably the Midodrine. I had to stop it b/c of that and it would shoot down the sides of my face. It also didn't help my symptoms...

I hope you figure it out and it all starts to work!

Why do you have to taper off the meds? Doesn't sound fun!

What is the CT scan for? Heart?

Good Luck!

Sorry, no... (faked ya out!)

I was wondering if anyone out there knew if any of the POTS specialists take new patients without a referral? Mine continue to have this long list of things to do before we can discuss it, at this rate in will be three years before I get to see anyone.

Yikespanic, did you have a referral to see Dr. Grubb and Drs at the Cleveland Clinic?

Good luck with your appointment!!!

Let's see...

I am thankful for so much I am sure I will forget a lot!

I am thankful for....

My family

My friends

To be able to still be able to stay in school

To find some help with the daily struggles

To finally find some answers

A warm (but not too warm!) and comfortable roof over my head

For people who listen to what I have to say (Drs etc), b/c it makes all the difference

That things seem to be coming together relatively well.

And of course this forum of very helpful and caring people!!!

I am sure I will think of more later!

Sorry, I don't know much about Chiari. But, it sounds like they two may be related.

I had been wondering how easy it is to diagnose Chiari from an MRI? Does it take a specialized neurologist, or would most be able to notice and diagnose it?

Just curious, because as far as I know the only neuro. who looked at mine was convinced there was nothing wrong with me, so was curious how easy it would be to miss? I think she was mainly looking for MS signs at that time anyways...

Do radiologists normally catch it?

Thanks!

Happy Birthday!!!!

Sweet 16!!!

Hope you have a great day!!!

Wow! More great info! Thanks!

Oh, yeah before I forgot to say yes I am female , and interesting on the whole estrogen thing.

Mkoven, so do you take a multi-vitamin and those, or take everything seperately?

The melatonin thing I got from POTS place things to avoid, and that sometimes it makes people feel worse. Now that I know more people take it, I may try asking my doc about it.

I also think I will end up stopping that other multi-vitamin, I will have to find someone to give all these things I try and dont work out to...

Yeah, I forgot I have been working in more soup too! I also have been trying to add in more veggies, such as the frozen kind you can microwave.

I also try to eat some fruit, but the sugar tends to make me hypoglycemic. But, I eat some fruit leather/fruit snack (made with actual fruit). Also, sometimes frit juice like Odwalla or Naked. I also still do dairy (so I eat like string cheese, b/c of the protein and salt content).

I also tend to exist on frozen chicken tenders/nuggets/tenderloins and hamburger. It is the only meat I really eat, and they stressed eat a bunch of protein.

Sorry, I don't have any great words of wisdom, but I think the taking a bunch of leftovers and snacking on them for a few days sounds fun!!!

I wonder if you ask your folks because there will be so many extra people there and with all the cooking if it would make more sense to turn the heat back a bit? If not I guess just run outside everyone and a while, freeze and then come back in. I do that some at school.

Maybe even sneak over and crack a window and then sit by it! I like to be sneaky!

I wonder is there any antacids/Beano etc. that can be taken before eating to decrease symptoms?

Good luck! (and pace yourself )

Those are so cool! That is so interesting! Thanks for sharing, I would have never known they existed!

Hi all!

It is that time of the year where food is a big part of daily life with all of the wonderful holiday food. I for one just want to eat a bunch of pies, cookies, potatoes, veggies, and muffins. Most are not what I should be eating!

I know myself I am still struggling to find appropriate foods that don't aggrevate other symptoms.

I am still learning the best things to eat, and what not to!

So, I wanted to start a thread of what people's favorite POTS friendly foods are. It doesn't have to be just one!

Let's see for me... I started eating more protein bars (some of the Lunas are really good!), I also eat a lot of nuts/granola and nut mixes, and also am working on liking chili and other foods with beans. I also eat some oatmeal and other whole grains foods. I can't think of anything too interesting now!

What are ya'lls fav foods?

Hi! Thanks for ya'lls help!

I wanted to add a couple of things. Yeah, I had never been told by my drs about the beta blocker depleting CoQ10 and Melatonin, but I think every time I pick up my prescription from Kroger the insert has this thing explaining that if you take beta blockers these may be depleted and consider supplementation. I had just started to even ponder the idea, an had only planned to do it if it was highly recommended. I will try to remember to ask the pharmacist next time I am there.

As far as the multi-vitamin, like many I was just trying to find one that is easier on my stomach and has a lot (enough) of the B vitamins, because I know I tend to be depleted. So, I am trying this Centrum Energy one. I figured it should be cool, the only things I questioned were the ginsing and gingko. So, I really didn't figure there was even that much in there, it isn't like taking a whole pill of them. (So, maybe not the smartest, but it is a multi-vitamin). So, I figured I would give it a shot. So, yeah I am currently not sure on that whole topic.

But, yeah I agree to be very careful with supplements, I actually yell at my dad all the time on this! So, I do plan to try to talk with dr. and pharm. I was just wondering what you guys' experience had been. The only supplement I take is the multivitamin, before starting anything else I do plan to talk with pharmacist.

For the vitamin water, I actually tend to be bad at taking my vitamins (due to stomach upset). So, it was my way of trying to find a different form of supplementation. Also, they do not have a lot of many vitamins in there. The ones that are I think are the water soluble kind that if you take more than your body can use, you end up excreting it. So, I hadn't been particulary worried in ODing. Plus, all in all I really have only had like two bottles so far. Plus, they have electrolytes in them so I thought that would be useful. I don't always know the best thing and just kind of dabble in different things to see what may work/help.

Thanks for your help! If you have any other help, please keep it coming!

Happy Weekend!

Hi Sue!!!

Welcome!!!

Sorry I don't have any words of wisdom!!!

Me again!

Okay, I forgot I had a couple of other questions I am currently taking a new multi-vitamin (which is easier on my stomach) and has more B-vitamins etc (is why I tried it).

Anyways, question is it has ginseng and gingko in it. Are both of those okay for people w/ POTS etc.????I should probably check on it with the meds too, but so far no issues, or really any changes.

Also, has anyone tried vitamin water?? I have recently started drinking it, I think it does help to a point. Since it doesn't have salt, I should probably start dumping a salt packet in it. I like the fact that there is no artificial sugar which is nice!

Hi all!

I picked my meds up today, and with the beta blocker was the insert again on if you take beta blockers you may want to take CoQ10 and Melatonin. So, I guess the beta blocker depletes them? Melatonin supplements we are supposed to avoid right? How about CoQ10? Any bad side effects or reasons not to take it? I need to ask my pharmacist. I have wanted to ask drs. but they are always so rushed and just want to discuss what they want to. Anyways, should I look into it?

Thanks for any help!

Thanks for clarifying Flop, that makes a lot of sense. I just hadn't put it all together!