Jump to content

I am new here and looking for help and/or advice


vjsnowprincess
 Share

Recommended Posts

I'm new to the Forum, I just think it is great to have a place to talk to others who are dealing with the same things I am. Anyway, this is the first time I have posted-sorry it's so long..

I was diagnosed with POTS in 2002 after having what I would call "mild" symptoms. Within the last five months my symptoms have gotten much worse. Some days I can't hardly function. To make things worse, I am also dealing with my wedding which is 28 days away. I think the stress and anxiety is aggrivating my symptoms. I am on Midodrine and wearing my compression sttockings all-day, every day. I cannot get in to see a Neurologist until a month after my wedding. Has anyone found things to work for them for the anxiety and the times you just can't stand-up for 5 minutes without needing to lie down?

Any wisdom or advice would be GREATLY appreciated.

Link to comment
Share on other sites

Hello and welcome to the forum!

Sorry you are having a flare-up of difficult symptoms. With a wedding coming up, you do have much stress on you--and stress does usually exaccerbate POTS symptoms. That's very frustrating that you can't get in to see your doctor for so long. Don't hesitate to call again to try to see him or her sooner if your symptoms become unbearable.

Try keeping up with your fluid intake. If you are having trouble standing up for long, it probably has to do with hypovolemia (low blood volume). Have you tried increasing your salt intake? That also can really help. Some people find that an increased amount of animal fat in the diet is helpful (short term!). Some people take licorice extract to increase blood volume, but it would be ideal to do that under the supervision of a doctor. It would really be best to talk to a doctor about all of these measures before starting any of them (except the fluid intake).

I have usually found yoga to be helpful in reducing the effects of stress on my body--especially combined with breathing and relaxation exercises. If you have never done yoga before, its great to start with a live class/teacher first. There are also good tapes though.

Massage might be beneficial, too, to help with relaxation.

Good luck and let us know how things are going.

Katherine

Link to comment
Share on other sites

I concur with all of Katherine's suggestions and comments. Also, perhaps you can delegate some of the wedding responsibilities to a close family member or friend that understands your situation and condition. It's okay to let them know the stress is making your POTS worse and that any help they can offer would be greatly appreciated. And the best thing to remember is, "Don't sweat the small stuff!" :) (I know it's easier said than done, but sometimes when we look back on the things we worried about, it's amazing to see how minor they were in the scheme of things.) Congratulations on your wedding. Hope you have a stress free honeymoon!

Link to comment
Share on other sites

Guest Mary from OH

I would definately push for an earlier dr appt. Explain to your neuro office that you're getting married and that you're having an exaccerbation of symptoms and that you need to be seen right away for an adjustment of meds. You can't wait a month. They "should" be able to get you in earlier. Isn't your PCP or someone else able to help you? Do you also see a cardiologist?

I wish you luck. I do think that the fluids, espcially Gatorade and water and increased salt intake will help some too!

Link to comment
Share on other sites

Thank you for suggestions. I did origianally see a cardiologist at the Mayo Clinic-back when the symptoms started, and when I was diagnosed with POTS. But I haven't seen him in a year or so, since my symptoms were manageable. I also stopped going to my PCP since he was no help at all. I have recently seen an internal medicine doc. and she is the one who referred me back to Mayo to the neurologist. I did tell the scheduler why I needed to be seen sooner-and she said if there are any cancellations, they could get me in sooner.

I will keep going with your suggestions-thankfully my family is supportive and are taking some of the responsibilities off my shoulders.

Will keep you posted...I think just finding this website and forum has been a huge help in lifting my sprits. It's great finding people who understand exactly what I'm going through.

Thanks!

Link to comment
Share on other sites

One thing that works for me if I have to be somewhere is to sit with my feet up on the chair in front of me. It helps to keep your feet up so the blood does not go there instead of your head. And sit as much as possible especially when there is extra stuff to deal with!

Hope you can see your doctor soon!

Congratulations on your wedding!

We are a really great group here and all of us understnad which like you said helps more than anything so ask and we will try to help!

Stacey :-)

Link to comment
Share on other sites

hello and welcome!

just wanted to welcome you here! i meant to do it sooner! also, congrats on your upcoming wedding. i am glad that you found us...hopefull we will be able to add to your already supportive network...

i would definitely think the stress of wedding would make the POTS worse, as any stress does! (good stress or bad stress for me!)...

if you have to sit down during the ceremony, you sit down...no one will love you less! :)

i wish i had some other insights. it would be really great if you could get in for an appt. before the wedding...however messing wiht new meds right now might not be great either...hmmmm....i am not helping am i??? :P

really, just wanted to say welcome here...

emily

Link to comment
Share on other sites

Thank you Stacey and Emily, We have already talked to our pastor about sitting during the ceremony- I think we will have a bench where we can sit during the entire ceremony if I need to.

Also, I too think that if we started to change my meds this close to the wedding, we might have a bigger mess. Luckily my younger sisters are my bridesmaids, so they know whats going on, and will help out in any way they can. my biggest fear right now is just making it down the asile. :) We can deal with everything else as it comes.

I will let you all know how the day goes...and I saw the pictures some of you posted, and once I get our wedding pictures back, I will try to post one of myself, too.

Thanks for your support!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...