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Wife Has Pots - Looking For Help!


thericky
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I'm happy to have found this forum. My wife woke up one morning nearly 2 years ago with POTS. She was working a full-time job in a lab and went to work one day feeling awful. She came home and never returned, as POTS prevented her from doing so. It took a couple of doctors before it was properly diagnosed to the point where she received medication that helped a little, but not nearly enough.

Her POTS has grown worse over the last year to the point where she now only leaves the house to see doctors. The rest of her time is spent indoors for fear of having a POTS-related episode while she's out with nowhere to lie down.

Lying down makes her feel better most of the time, though in more serious episodes it takes minutes, if not hours, for her to feel okay again.

She is extremely sensitive to heavy activity and heat. We live in Florida, where it's practically summer year-round, so doing anything outside is now nearly impossible for her.

She's currently taking Toprol XL, which is what enables her to get out of bed and mostly function around the house. She's also taking salt tabs and drinking lots of water. She's tried Florinef which didn't help and midodrine which drove her nuts with goose bumps and didn't help.

Now we're looking at trying out various other medications including Labetalol, Clonidine, and/or Norpace. Has anyone had any luck with any of these three or a combination thereof?

Does anyone have any suggestions to help get her out of the house and functioning at least a little bit?

Thanks for your help.

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Welcome. I live in Florida as well and understand about the heat. I have no words of wisdom to add but wanted to encourage you. It is wonderful that she has you to go through this with her. Having your support makes a big difference. My husband is very supportive too and it really helps.

mary

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Hi,

Welcome to the board.

You can have a look at the following links. Also you can have air conditioning if you don't already have it.

Overview of POTS

http://www.dinet.org/pots_an_overview.htm

Symptoms

http://www.dinet.org/symptoms.htm

Mechanisms (what is happening with your body while you're symptomatic)

http://www.dinet.org/what_are_the_mechanisms_of_POTS.htm

Causes of POTS

http://www.dinet.org/what_causes_pots.htm

Detection of POTS and other autonomic dysfuctions

http://www.dinet.org/how_is_pots_detected.htm

Treatments (what helps)

http://www.dinet.org/what_helps.htm

What to Avoid (what makes things worse)

http://www.dinet.org/what_to_avoid.htm

Myths

http://www.dinet.org/myths.htm

What does the research have to say

http://www.dinet.org/research.htm

Related links

http://www.dinet.org/links.htm

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I've already checked out all of those links and every section of the web page. Also, we most certainly have air conditioning... POTS or no POTS, it's a requirement in Florida. We have it set around 72 degrees at all times.

I was really hoping for a bit more help with regards to possible medications to try or any other suggestions anyone may have that we might not have tried already.

While my support does help her get by, the goal is to get her to a point where my daily assistance isn't needed anymore just to do the most basic of things.

Thanks!

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I donn't think you listed Mestinon - I have recently started that one. I don't do well w/ drugs in general (very sensitive) and could not handle Florinef either. Haven't tried Midodrine yet and my doc wanted me to try mestinon first b/c it has less potential for side effects. (I still get some but they aren't terrible).

anyway, it's worth looking into.

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i AM ON nORPACE FOR NEUROCARDIOGENIC SYNCOPE. (oops sorry about the caps)

I was functionally disabled till I got on it. I work full time now and if I make sure I get a full nights rest I am close to normal. I posted a thread titled "Norpace", not long ago, maybe you should have a look at it.

Also you should try raising the head of the bed 2 inches, gradually increasing,some people have great results with that. It is similar ,in principle, to tilt table training- which you can search on the web.

good luck!

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Sorry to hear your wife's story. So many of us seem to have been hit out of the blue. Florinef does help me but it took a while. Did you give it several weeks and try increased doses? I have been on .15 for a while but was up to .4 at first. I also take nadolol to control the tachy and because I often have high bp. I do not take salt tabs but instead consume a lot of chicken broth. I get the salt and the liquid with this. I shoot for at least 4 grams of salt a day.

I think that pots can really affect our ability to function on two levels. The first is the obvious, we can't stand for long etc. The second is equally debilitating; we become very tuned into our bodies (survival) but this increases our anxiety level which makes our bodies even more strung out. I guess I should not speak for everyone, but this is what I have realized is happening to me. For that reason I have been seeing a psychiatrist who medically understands what is happening with my body, but can also help support me as I determine what is pots and what is my reaction to pots. I have become "braver" about doing things because of this. I know what my limits are and I have learned to respect them while still trying to live a life. That may or may not help your wife but chronic illness is so taxing that I have really benefited from having some outside support.

There was a mystery diagnosis show on recently which featured a women with similar problems to us (The women who kept falling down - check it out on Discovery Health) and eventually she moved to a cooler climate because of her condition. That might be impossible for you, but I thought I would mention it.

Good luck and I think it is wonderful that you are advocating for her. Pots can be a very isolating illness. I know my husband is understanding to a point - how can he really know how I feel? Every second I am regisitering some body change (too hot, too cold, goosebumps, heart racing, dizzy, headache, etc. etc.). It can make you feel like you are nuts!!

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I'd just like to echo how great it is that you're so supportive!

I know anxiety is often a symptom of POTS, and when you describe your wife not wanting to leave the house, I wonder if part of that might be anxiety related? If so, perhaps an anti-anxiety med thrown into the mix might help.

Although it's a slow process, I've found that it's important to try one new thing at a time, so you know what's working and what isn't. Sometimes the temptation is to make too many changes too quickly because one is desperate for relief -- but this isn't the best thing for your body, and it makes it hard to know which medications, etc, are effective and which aren't.

I find supplements help a lot - I felt significantly better when I started taking magnesium and B-complex. Both are vital to nerve health, so it kind of makes sense. I'm going to start seeing a homeopath in a few weeks -- if your wife doesn't feel better with conventional medicine, it might be something to try, although with the aide and consent of her doctor, of course.

Hope things improve for you and your wife,

Jump

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I hate to add to the anxiety thing, but I went through that a bit myself. I was so scared I would collapse in public, that for a while, I stopped going out, or stressed myself to the point I couldn't. I just got really annoyed at myself and forced myself to do it. It happened (falling and fainting) and still does, but oh well, you just learn to deal with it. Figure out triggers, like certain types of light, lots of noise, things that over stimulate the body and stay away from those things, and do the things that don't seem to trigger the problems.

Sometimes you have to try a few meds before you find one that works well for you. There might be a different Beta blocker that works better than toprol for her. The only one I can tolerate at all is atenolol, which is as old as the hills. Some of the SSRI antidepressants have helped people a lot, and sometimes a tiny dose of an anti anxiety keeps the autonomic system in a little better check.

I also go to therapy. This is a very stress provoking illness, and contrary to what most in the medical profession believe ( I was a nurse for 30 years) no one enjoys collapsing in public. There has been many a time, my hubby had to get me to the car and more than once I didn't make it. We can become a bit obsessed by this illness. But for many of us, the illness IS progressive and very debilitating, so I do not want to imply in any way, it's a psychosomatic thing. It is hard to deal with though, especially for people who haven't been diagnosed for long. It very well may be she is too sick to go out much, but that is best sorted out by a good therapist who understands she has a very real illness, and what affect it is having on her emotionally. And you. From the way you write, it sounds as though she seems to talk herself out of going out from the anxiety of "what ifs" This would be an area a therapist could help with. I think almost everyone on this board has seen a therapist, or is in therapy, so it's nothing to be embarrassed about. My husband goes with me too quite often, because this is as hard on him emotionally, as it is me, physically and emotionally.

I never go out, ever, without a transport chair, but my illness has been very progressive and I don't recommend getting one until there's just no other choice. If she does pass out or grey out quite often, you might consider getting a little transport chair that fits in your trunk. They cost between 100-200 dollars, weigh about 15 pounds and will fit just about anywhere when folded up. I assume she is unable to drive, or chooses not to. I stopped in 2005, for fear I'd hurt someone else. But several people on the board still drive, because they never pass out when sitting.

I had 2 concussions, broken ribs, toes, and vertebrae before I would use one, but I made the decision, because my hubbs hurt his back trying to pick me up off the floor. I have a couple other things going on, which has caused me to be more progressive, but in the end I am not sorry I got the chair, because it was a help to hubs, emotionally. But I was sick quite awhile before I got it. I wanted to know it wasn't because I needed it as a crutch, but because I hurt myself or my hubs.

This is a frustrating and complex illness, and most of us have to see several doctors before we find a good one and some of us never do get that lucky (me included). Much of this ends up being self learning and trial and error. it is never a bad idea to try different meds. Hopefully the doctors who have given your wife meds have started on teeny doses and titrated up very slowly. Many times, full doses are given and there are very few people here who tolerate adult doses of any meds. That may be part of the problem.

You are a good husband to try and find answers to help. Hopefully your wife will come on at some point and maybe share what's going on from her perspective and we can add more input. morgan

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Welcome!!!!!!!!!!!!!!!!!

Home becomes our safety zone. The more we stay home in our routine the more we want to.

I would never leave the house if I or one of my family members didn't make me.

We are in Wisconsin, the summers get hot and humid. I always carry a cold spray bottle and spray myself constanly as I don't sweat.

I also get episodes, I have had to lay down in department stores on the floor. I just ask for a chair to put my feet up on.

I also recline in the car and put my feet on the dash or even on the ceiling when I lay in the back seat.

You have to crank up your sense of humor with this condition. I have even fainted and woke up on the checkout belt standing in the grocery line.

A low dose of an SSRI, I take Celexa has helped me the most.

I went through episodes of fear and depression. My family just got sick of listening. So I decided I am going to give anything a try if I tip over, I tip over.

I don't mean to minimize as I have had a few ambulance rides but we can't live in fear.

Dawn

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I haven?t tried the medications you mention (currently on Toprol and Florinef and they seem to be keeping me somewhat level) but as you see, it?s really been trial and error for most people here. What works for some, doesn?t for others.

After being house-bound for months when first diagnosed, I was scared to death to venture out alone for fear of an episode when alone/in public. At first, I would only leave the house when with a family member or friend (preferably my husband or brother who could ?catch me?). Klonopin helped me out a bit. It made my symptoms less severe and really took the edge of the anxiety.

Eventually I decided to try and get my life back. First took a drive by myself, then a trip down to the corner store for milk. Learned to modify things ? do grocery shopping in the evening (it?s cooler out, less crowded and shorter lines to stand on), if I need to sit down, I sit down (can always make it to my car now to do so if I need), wear a cool-dana (bandana that you freeze and put around your neck) and carry bottles of water w/me at all times.

I can function pretty well most of the time now although I don?t know if I?ll ever have the life I had pre-POTS. Still gotta keep doing the ?baby steps? each day and try to stay positive. Good luck!

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Hi! Welcome! Sorry, I do not have much experience with most of those meds.

But wanted to say hi and I hope others are able to help you with these meds.

Has your wife had good help from doctors and any non-medication help (compression hose, fluid/salt loading)?

Welcome to Houdini Cat too!

I hope you all find some answers to your questions and support! :blink:

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I am not a very anxiety driven person, but I get really frustrated and put out by all this. I get bitter about it, but on my tilt table test I did go panicky. It was an incredibly scary feeling.

I tend to fight and ignore my symptoms and blow them off as somethign temporary. It's only been since they have prgressed to this level that I just couldn't ignore things any longer. So after being to many doctors over the years I figured I would try again uintil I got an answer, and it took months. I was recently put on zoloft and it has really helped many of my symptoms. I still have episodes, but I can usually function through them, and I am going on walks with my child and husband. I usually have a really good day followed by a bad day. Today is a bad day. Yesterday i was fine. Not a single episode. It's so weird how one day of activity in tolerable but completely wipes me out for the next day.

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I'm on both Prozac and Klonopin, which help me emotionally, but as far as going out, getting medical tags and wearing them constantly helped me immensely. I know that if I do pass out in public, EMT's will know why (or at least see what it is, even if the dr's at the ER have to look it up...) I have my meds listed on my tags, also, so I know I can get them if something happens and I'm in the hospital without them. Medical tags are pretty easy to get and you can get them in necklace or bracelet, whichever is more comfortable. Maybe that would help a little with leaving the house?

Meg

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