Lauren78

Thank you so much doctorquest! You have no idea how wonderful and appreciated it is to have a doctor who is willing to teach other doctors about POTS. There is so little understanding out there amongst a large majority of medical professionals...so any step to inform others is wonderful. Awareness is the key!

THANK YOU!

Thank you everyone who has posted...your info has really helped. Sorry I didn't thank you earlier...I have had a rough few days and haven't been on the boards.

Hello. I haven't tried the Ativan, but my step-father who is a doctor highly recommends it. He can't prescribe it for me, we are in different states and he is retiring; and my current cardio isn't sure about it. Nonetheless, when I was diagnosed with POTS my step-dad said the Ativan works wonders for most people with NCS and/or POTS. He said a 0.1-0.5mg 2-3 times a day is non-addictive, doesn't give the undesirable side effects, and really takes care of the dizziness and fast heart rate. So if it works for you, I would stick with it. However, I have no experience with any of the benzo's you mentioned...so I am just giving you my two cents from what my step-dad (a doctor of nearly 40 years) has told me. Of course your personal doctor and you are the only ones who can make the appropriate decisions for your care. Either way, take my two cents as you will.

Thank you! That seems very reasonable...especially considering the relief it would provide!

Perfect...link worked great!!! Thanks!

Hello! I have noticed several people take licorice root for their POTS. I read the info on the main site, and am now interested. I was prescribed Florinef but can not take it. So the only thing I am on currently is sertraline (until my insurance will pick up the midodrine). Anyhow, I was wondering if licorice root would be a good alternative for me.

Since it's a natural herbal supplement, I assume that if there is any reaction with it I can just stop taking it? Unlike the graded steps down you have to do with Florinef or any other steroid?

Those of you who take it...do you find it really helps with the low blood pressure, and the resultant fast heart rate?

How often do you take it? What dosages do you take it at?

I have an appt with my cardio next week and would love to find out as much info as possible to take to him, and maybe this will be a route we will decide to take.

Any info on your personal experiences with licorice root would be appreciated.

Thanks!

Thank you SO much for the information...it is quite helpful. I will have to fool around with my settings and see what's going on. Otherwise I will try another browser. Any idea on the pricing?

Thanks Nina, you've been great! With the summer temps hitting 115 out here, it's so hard to get around. The A/C in my car just doesn't cool fast enough, and doesn't feel cool enough..even though it's fine. Guess that's what I get for living in the desert!

Thanks for the info Nina. Every time I try to pull up cool vest it freezes and then shuts down my internet! So you're link didn't work. I wish I could get on their site! Any other suggestions?

I have a question on the cooling vests. Has anyone ever been able to get a prescription for one and have insurance help cover it? It is REALLY hot here in AZ...and I am in desperate need. I looked them up and they around around $200 for one. So just curious if anyone ever tried to get one through insurance.

If not...any idea where I can find any cheaper somewhere? I tried the link on the DINET main site, but it won't load.

Thanks!

Hi Melissa. Thanks for the info. I don't think that's what it is, because it happens when I lie down too. Especially lying with my head on something, like a pillow or propped up with my hand. My shoulders and neck don't bother me...just the base of my skull. So now I am really curious! Does anyone else have this? If not...maybe I should make a doc appt, or at least note it to my cardio in two weeks at that appt. Hmmmm....

How about the eye thing with reading, etc?

I have recently been getting pain at the base of my skull....on either side of where my spinal cord enters my skull. The part that kind of "sticks out" so to speak directly behind your head on both sides the base of your skull...you know, the part you rest on a pillow?

Anyway, I notice it is really sore after lying on a pillow or anything else, if I sit in front of the computer too long, etc. Does anyone else get this? What is it? This is a new symptom for me and it's rather irritating. Any ideas?

Also...does it bother anyone else when reading for a long time? I notice now that sitting in front of the computer too long, reading a book too long, looking at a magazine, etc starts to bother me after a while and makes my eyes all "twitchy." What's that about?!

Nina,

So sorry to hear about the second surgery, but very glad they caught it right away and got you in immediately. I hope you feel better soon...we are all wishing you well!

Lauren

Thank you to both of you. Sounds like this is pretty normal then as a side effect. I can stick it out, seeing as how it appears it does eventually subside. It's only been just over two weeks...so hopefully in another few weeks the side effects will be gone. Thanks so much for your input!

Alright, I have been on the generic of Zoloft, sertraline, for two weeks now. And since a few days after starting it I have been more lightheaded and having dizzy feelings than normal. I also have been getting frequent headaches. At other times my head just feels odd...like it's cloudy or stuffy inside...sometimes like it's twitching. I don't know how to explain it, but it feels odd...but isn't messing with my cognition. Is all of this normal? Has anyone else felt like this on Zoloft or any other SSRI?

I am assuming it's from the sertraline. I have a follow up in 2 weeks with my electrophysiologist, but wanted to see if anyone else has experienced this.

Thanks,

Lauren

Research and read the ENTIRE fine print of the policy before purchasing this type of insurance. Most likely, since you now have a diagnosis, the policy would exclude coverage for your diagnosis or anything very closely related.

Well that wouldn't be good! The whole reason I want to get LTD is because of my diagnosis. So I wouldn't be able to get coverage now? So then now what would I do?

Hi Linda. Sorry to hear you are being maddened by your symptoms! I haven't got the "inside tremors." But occassionally when I get tachy I will tremor on the outside like I am cold. I think both are just a reaction of the fast heart beat and hypovolemia. Just a guess though.

What heart procedure did you get done? If it was a catheter ablation or radiofrequency it can take up to 3 months for the tachy and PAC's to go away. Sometimes people feel like they are having more episodes within the first few weeks also. Of course I would highly suggest you call your cardio just to be sure and to get reassurance and info from a medical professional.

Good luck!

Hello everyone. I know it probably seems like I have asked a lot of questions lately...sorry, this is just all so new and the peace and comfort I get from a support network is reassuring.

My mom, who has FMS and CFS, has been disabled for 10 years now. Since my diagnosis she has been talking to me about getting a personal long term disability insurance plan...just in case I am not able to work at some point in the future. I was wondering if any one has LTD insurance on their own, and if you have any suggestions for a good plan, or company. Anything I should look for? Anything I should avoid?

My mom said I need to look up something called "any occupation" LTD or something like that...so they can't say I am able to pump gas and deny me. She insists that even though I am healthy enough right now to go to school and work PT, that in the future I may not be able to and it would be stupid of me to not make provisions for myself. I know she is right.

So any help or advice would be great!

Congratulations! I am glad you stood up for yourself! I know it's hard for others to view a seemingly normal, healthy looking person as having a disability. My mom, who has FMS and CFS, has dealt with that for years. When I have problems I have had others look at me like I was faking or something...because they see a normal, healthly looking young woman. Flop is right...we need to keep raising the awareness of "invisible" illnesses, like POTS (and FMS). Good for you for sticking up for yourself...you should feel proud!

Hi Sue! Oh, I know exactly what you are talking about! Although mine isn't caused by meds...it's just one of those things I used to get teased mercilessly by my guy friends in HS always asking if it was cold out and other such comments. So although I have no advice as far as meds for you, I would suggest a lightly padded bra. I always buy bras that are lightly padded, not like they have built in boobs, but the ones that aren't real thin...that way I don't show through my shirts. Hope that helps...and I sympathize!

I was thinking microtear, but it just seems like my muscles get fatigued easier than "healthy" people. When my friends or family members have the same type of routine as me, even with the on again and off again, none of them get as sore or tired as I do. I always use such a low amount of weight that the resulting pain seems ridiculous

I didn't realize that lifting weights can lower your blood pressure. Makes sense I guess. Kind of a catch 22 since exercise is supposed to help POTS, but at the same time can cause symptoms to flare, huh?!

Thanks for your information. It seems silly to go to the doctor, but maybe I should. I went when my arm got hurt and he said there was really nothing he could do, to just take it easy and watch the weight I use. He said it was a small amount to cause such pain, but had no explanation (this was before being diagnosed with POTS...which is why I was curious as to whether or not this was a POTS thing...if others experienced unusual muscle pain or fatigue when working out).

Hi all. I have a question about sore muscles and working out. When I work out at the gym, especially a new exercise or muscle group, my muscles and joints get VERY sore. Not the typical sore from a new workout, as my fiance' points out, but I can barely more without searing pain sore. And I don't do heavy weights either. I worked my triceps out a while back and hurt the muscle and elbow joint so badly I was in a brace for 4 weeks because I couldn't even bend it. When I work out my legs (after taking time off) they are so sore it's tough to walk. As long as I keep working out 2-3 times a week I am fine and it doesn't happen...but if I miss any time, which as you all know with fatigue and dizziness it's not possible to keep a consistent schedule...then I am super sore all over again.

Has anyone else experienced this? Is this a POTS thing, or should I be concerned it may be something else?

Thanks!

Hi Nina,

I hope you are feeling better soon and have a fast recovery. Glad to hear you are able to recoup at home. Feel well soon!

Lauren

Lauren, for the sake of your article I will e-mail you a copy if you would like. But if you would like to purchase the book you can click on the "Dawg Tired" link in my signature and follow the links.

Oh thank you...that is SO sweet! I would love a emailed version (harmony7877@yahoo.com). I am also going to purchase a copy when I get paid in a week...I think it would make a great gift for my mom who suffers from a debilitating form of FMS and CFS. She will probably love it!

Hi Rita. I don't know if this is the same thing. But I often get chest pain when lying on my side, lying down, or leaning while sitting with any pressure on my chest. It just feels odd, like it's compressed. I am torn on whether or not to go to the doctor, because I am sure it's just a POTS thing and x-rays, CT's, and ultrasounds within the last year were all normal.

I don't get the breast pain though (outside of PMS ).

Definitely mention it when you see your GP Tuesday...and let us know what he says.

Lauren

Okay, this is probably a potentially stupid question, but what is Zoloft supposed to help?

I know it says POTS and neurocardiogenic syncope, but nowhere can I find what specific symptoms it is supposed to be helping. Clearly it doesn't help with the tachycardia or low blood pressure. But what does it help with? I am just curious. I have been on it about a week, I take the generic-sertraline-and have noticed some improvement, generally I just feel a little better. But I am curious as to what symptoms it is supposed to help with.

Thanks

I didn't know that...that is great! What is the name of the book? I would love to pick it up and read it sometime!

hey gayla! nice to see your name pop up!!!

for your information lauren, gayla has written a book about living life with pots (how it was found and how she deals with it). as a proud owner of this, i can advise you to read it. maybe it could help you getting ideas for your paper!

good luck writing,

corina