Noreen

I know you are having problems with old forum searches so I did this one for you

http://forums.dinet....p=forums&st=125

Cervical stenosis got me back to 2004. I haven't had a chance to read them all but they will probably interest you, especially this one -

http://forums.dinet.org/index.php?/topic/1605-connecting-neck-to-the-autonomic-nervous-system/page__p__14072__hl__%2Bcervical+%2Bstenosis__fromsearch__1#entry14072

I don't see Dr. Grubb but know from other boards that it is a very good thing to get in with his NP. She is reputed to be amazingly thorough and kind.

Once you are established if you have difficulties beyond her, she can always get Dr. Grubb's input.

Very interesting article.

Thanks for posting the link

{{{Tonya}}}

I wish I could help in some way but I can only offer support and prayers.

Sending positive energy your way for strength and the proper MDs to help your daughter.

noreen

Diagnosed in 2002 at age 43. Fibro since 1990, RA since 1998, and the dx list kept growing. Generally fms was attributed to auto accident but I had my gall bladder out 9 months prior to that and I think it may have started then. The ncs symptoms I have had forever.

So sorry Mack (and you) have more to deal with. I hope the testing and procedures go smoothly.

This article might be of interest to you

Differentiation of convulsive syncope from epilepsy with an implantable loop recorder

In the meantime, I am sure your doc is recommending you take your Midodrine with plenty of water prior to getting out of bed.

Hope you stay well,

noreen

I have always loved shopping but my symptoms have worsened over the last 2 years. I find that I can not go to the back of a store or into large stores for fear of racing heart, dizziness and fainting.

I keep making excuses for things, how long can I do this?

This is so debilitating and depressing..

I totally empathize with you. I do the small local grocery or only use a motorized cart in the larger stores. I buy on-line a lot too.

My situation is complicated by also having cervical dystonia so hate getting stared at if the movement disorder kicks in due to fatigue or stress. We just have to make adjustments for our new normal, I guess.

((hugs))

Allsup is highly recommended on EDS boards.

No personal experience with them, though.

Good luck.

I've researched and bought the Hiamalayan salt. It's probably better as it's unprocessed; but my go-to-guy, Harvard educated, natural health & wellness guru, Dr. Andrew Weil cautions against using any more than 1,500mg a day- that's one tsp. So, if I'm going to break down and use salt- it is Himalayan and I literally count the grains

Natural and unprocessed doesn't mean you can go crazy with it Sigh...

Glad you are having good results with your treatment plan.

I don't salt load but liberally use it on food. It is a tough balance in that I don't want any more black eyes from falling or passing out.

BTW, I somehow read your post wrong yesterday and thought you were doing that much running in 1 day - sorry for the brain misfunction.

I've done allot of research on salt and the body and how it reacts to salt. All the doctors tell us to lower our salt intake for the sake of our heart - BUT, the POTS doctors tell us just the opposite. I think that if you use salt, it should be the natural, unprocessed salt - either Sea Salt or Himalayan Salt. When it's processed, all the minerals are stripped from it and it changes the shape of the molecules and it becomes a foreign refined substance - that who knows what will do to us.

Issie-

I don't use salt in cooking. When we first started discussing himalayan salt almost a year ago, I switched to it exclusively. I have had an occulsion on my left carotid artery for several years and have had at least 3 ultrasounds. At my cardio appt last week, he detected no problems with the artery. Do you think switching salts made that much of a difference (and so quickly)?

noreen

I am so sorry for your episode. The experience sounds horrendous and to have the ER people tell you to stop breathing is just too, too much.

I hope today begins a healing peaceful period for you.

Julie-

How funny you posted when I was thinking about you when I read this New York Times article "When Exercise is Too Much of a Good Thing."

"Spending more years exercising strenuously or completing more marathon or ultramarathon races was, in this study, associated with a greater likelihood of heart damage."

I don't know if we will be able to sort it all out but it adds to the debate as we try to keep moderation in mind. I am wondering if your reduced exercise could be as much a factor as reduction of salt.

I am back on Inderal/Propranolol.

I've talked to other POTSIES and Propranolol seems to help us most. I wonder what secret thing it does to the brain? I'm already feeling better back on it, even with a cold. It's a huge improvement for me.

Glad you are feeling better. Hope your cold resolves quickly.

Welcome Claire-

To say it has been an ordeal is an understatement. How very hard to be away from your 3 year old and to be so ill.

Are they evaluating you for antiphosolipid syndrome (APS)?

Here is a link to an abstract on POTS and pregnancy - http://onlinelibrary.wiley.com/doi/10.1111/j.1540-8159.2009.02430.x/full

by Blair Grubb.

I hope you are able to find some relief.

Hi and welcome-

I am glad you found this wonderful community. You should check out the main webpage - in the left hand column is a link to things that help. Generally increasing water and fluid consumption is a good idea. Now that you know the 'weird' feeling happens just before you pass out, you can learn some tricks to try and abort a full blown episode. Here is a link to an old newsletter with a great page on Syncope counter maneuvers, aka things to do to not pass out - http://www.dinet.org...ws-Summer09.pdf

.

On the home page is a link to doctors familiar with our problems. Check it out and maybe you'll be lucky enough to find one near you.

It is great that you have a good primary doc willing to listen to you and learn.

Take care,

noreen

Very interesting article!

Thanks firewatcher.

Thanks, Brye. If there isn't a watch out there that can track BP, there should be!

Cheers,

Jana

I'd buy one!

I have the same problem! It is so very hard as I use to read constantly. One book in 2 years instead of 1 a day!

What a heartwarming story!

Thanks for sharing.

10 mg of lexapro has helped me deal with anxiety a great deal. The only side effect for me has been weight gain.

It is much easier to think when the anxiety is controlled.

I was on minocycline 100 mg bid for a couple of years for RA. I think it helped but as problems grew it got too hard to convince doc to rx that also.

It is very important that he use strong sunblock - I never had a tan in my life except when I was on minocycline and I always used at least a 25 block. In retrospect I think taking D3 with it would be beneficial.

Thanks for the healing wishes, truly appreciated. I laughed out loud at your sidewalk remark.

I can't afford to replace the progressives and had to go with bifocals so I will have to see how I make out with the glasses.

I know what you mean about all the braces. Math quiz - If it takes an hour to get up and dressed and an hour to put on the braces and you only have two hours of energy per day, how likely are you to leave the house?

hope you have a good day. The weather should be good in your neck of the non-woods.

Hey, I had Thursday covered. Didn't get down fast enough and fell on my face. I now have a lovely black eye and had to buy new glasses.

fellow pavement inspector,

noreen

Two things come to mind. Didn't you just switch bb to metoprolol (sp?)? That can cause D.

The other issue is your continuing upper respiratory problems. I often have problems then I think due to the increased mucus throughout the system. Increase fluids and make sure you are getting probiotics - I eat yogurt.

And, of course, you know stress is a major culprit. Could you try a short meditation? I am thinking about a 2 to 3 minute to practice before you begin work so it is second nature when you really need it so as to settle down.