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dawn
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Hi,

Just found this forum the other day. I've been reading all the posts. Lots of good info posted thank you ^_^

I was diagnosed with pots 9 years ago. This year I had to give up my job as a school nurse and I am really depressed. I feel like the plug has been pulled. I've been a nuse for 29 years. I've always been able to suck up the symptoms, crank up my sense of humor and function. Now I'm so weak I have to sit to shower, most days just stay in my PJ's. I no longer drive due to the syncope. Have low BP try to eat as much salt and water as I can. Florinef and midodrine were a bust. Been on 4 different SSRI's with no effect. I have the hyperadregeneric pots so lots of anxiety. I take Inderal, Xanax and Klonopin for sleep. Dr. Low diagnosed me 9 years ago, I saw him again this September. He recommends mestonin but my sodium level is too low to try it now. My local neurologist disagrees with mestonin because of the side effects. Still the burst of tachycardia with the tilt table. Now I have cardio vagal failure which is new. Has anyone tried any alternative medicine or treatment. I live in Wisconsin. Any suggestions would be appreciated. I did learn biofeedback, I was able to slow my heartrate but not warm my extremities. It seems like when I listern to relaxation tapes I feel worse.

I feel like I've given up and can't find anything to motivate me.

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Hi Dawn,

Welcome to this forum.

I was functioning pretty well with alternative treatment until I completely crashed 4 years ago. Now I need regular medication.

I am sorry you had to give up your job and career. I can understand your loss.

I tried Mestinon for a few days and I had terrible diarrhea, GI cramps and more syncopes. I am not sure it helps hyperadrenergic POTS.

Have you tried salt pills? I used to drink salted water but salt pills are much more efficient for me.

Do you wear compression hose?

Take care

Ernie

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Hi Dawn,

I'm glad you found this forum. It sounds like you're dealing with so much right now. I know it must be extremely hard to let go of your job after having been a nurse for so long. Try to focus on the fact that you were able to do you something you enjoyed and think of all those people you helped over the 29 years. Be proud of your accomplishments and those you helped along the way. Maybe in time, when you feel up to it, you can find something you enjoy doing from home or get involved in a hobby, join a club, part-time volunteer work, etc. Retiring from a job is often a big adjustment for anyone, and having to deal with POTS on top of that is certainly no picnic! ^_^

In the mean time, take the time to focus on helping your body heal and find balance again. Since you've been dealing with POTS for 9 years, I'm sure you know that sometimes meds quit working for us and it takes a while to find the right combo of treatments that can control our symptoms again. I have POTS, MVP and a lot of anxiety too. I have found that the support, friendship and advice from the wonderful people on this board help ease my anxiety and bring so much comfort. I hope it can do the same for you.

As far as natural treatments go-- I use sea salt, licorice root (to help raise my BP), an electrolyte drink and take a calcium/magnesium supplement to help calm my nerves and help with my heart rhythm. I take Klonopin to help me sleep. .

Some meds that didn't help you in the past may be worth trying again if you're really running out of options. Also, fish oils and Sam-E can help with depression as well. If you do try any herbs or supplements, just make sure you do your research on dosage, side effects and any possible drug interactions.

I'm keeping you in my prayers. :blink:

Gena

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Hi:

Welcome...I'm so sorry to hear about your situation. We can all relate on many levels.

Don't give up! I am very biased about docs, but I would HIGHLY recommend you go see Dr. Grubb in Toledo. He is wonderful. He is so knowledgeable about our illness and can offer many different med options. I imagine you might be an excellent candidate for procrit considering the severity of your situation. Dr. Grubb has had excellent results with this drug, and some others as well....

Also, Dr. Grubb is so helpful in terms of dealing with the psychological effects of this nasty illness. He is a huge support. He is probably the most compassionate and understanding person I have ever met.

Take one day at a time. Allow yourself to grieve your losses...be gentle on your mind and body. Rest. And DON"T GIVE UP!

Stay in touch with us! We are all here for each other!

Kristen

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Dawn, as others here have pointed out, long term illness and depression often walk hand in hand. In addition to treating the symptoms of your illness, you may also need to have treatment for the depression component. Treatment, as you know from your training as a nurse, can range from medications to combination of medication and counselling. Counselling isn't everyone's cup-of-tea, but some of our members, myself included, have done well working with someone that specializes in depression and major health problems.

All that being said, there are some strategies you might try for your day to day. Even if it's hard, you might want to consider keeping a routine where you put on regular clothing every day instead of your pj's. This is something that helped keep me from going insane when I was homebound for more than a year after several back to back surgeries. BTW, sitting in the shower is a common occurence for most of us here--the shower's heat draws blood volume to the surface of the skin in an attempt to cool the body--but doing so drops the bp further so, you'll feel dizzy. Keep the shower temp warm, not hot. In the summers, I keep it pretty darn cool (I joke to myself that it's refreshing ^_^).

Try to do one or two domestic tasks each day to keep a routine. For me, it might have been as simple as going out to the mailbox and reading the mail and/or sorting the mail. Some days, it was to make phone calls such as making doctor appointments. On a good day, it might be that I loaded the dishwasher. I know it sounds silly, but it made me feel more productive to have crossed off a few things on my to-do-list, even if the list was really short, and really low intensity activities. Other days, when I was up to being more physical, I'd have my spouse bring me the baskets of clean laundry, set them by my preferred spot on the couch, and when I was up to it, I'd fold everything and sort into piles.

This may sound kind of silly, but I also swear that my two cats helped me hold it together. Just when I was feeling like I was going to go insane staying at home, one of them would either jump in my lap or do something hysterically funny. Neither of them was ever much of a lap kitty, but that year, they were both my constant companions, even sleeping on me or snuggled into me whenever I napped on the couch.

Enough of my ramblings--I hope you find something that works to pull you out of your depression--or as some here would call a "POTS hole".

Nina

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Oh, and when you listen to those relaxation tapes, you might be shooting your bp too low. Keep in mind that the tachycardia is often FUNCTIONAL--your heart is compensating for a precipitous drop in bp by speeding up the heart to keep your brain and upper body perfused with blood (oxygen).

See the list of treatment options in the main section of the DINET site--under "what helps". Also consider reading through "help yourself to answers" pinned post at the top of the general discussion forum.

http://dinet.ipbhost.com/index.php?showtopic=1954

http://www.dinet.org/

Nina

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Excellent suggestions above. Some more ideas:

At the end of your shower, turn the water to cold and run it on your lower legs. Some say that this helps restore the circulation and raise the BP. I've also run it over my head and it seems to help a bit.

My anxiety, mental fatigue, physical fatigue and more were helped tremendously when I started taking the Standard Process brand of Magnesium Lactate. Other brainds and forms did not do anything for me. It may take some trial and error to find the right form or brand for you, but it would be worth an attempt. I took 3 times the recommended amount for a while, then tapered down to the regular dose.

Also, if you haven't already, cut out ALL sugars and sweeteners, caffeine, nicotine, alcohol, and foods higher in carbs, such as breads, potatoes, corn, grapes, etc. These all contribute to the hyperadrenergic situation. Concentrate on protein and good fats instead, and eat the protein and fat before eating carbs.

I also had to give up 2 very promising careers due to dysautonomia, so I understand what you are feeling. About 3-4 years ago I was just this side of bedridden, but I now have a full life again, albeit not completely symptom-free. It can be done - don't ever give up hope or stop working on it! I hope you begin feeling better very soon.

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Dawn, welcome to the forum and your soon to be best friends...at least when it comes to sharing what you are going through. I want to first congratulate you on continuing to work for 9 years with this condition. It must have required tremendous strength, especially being around so much noise and stimulation working in a school everyday. Now, after giving so much to so many for 29 years, your body is demanding a much needed rest.

I worked for 24 years before being hit with POTS and continued to work for a year. It took me a long time to make the "adjustment" to not working and being forced to take an early retirement. It is the idea that it was not our decision, not within our control and this illness forced the retirement on us that is so hard to process and accept. I do understand that. After giving your body time to slow down and fully relax you may find yourself getting back to some degree of normalcy and can look forward to some of the activities that you always planned to do when you retired.

I have learned that with hyperadrenergic that continually pushing ourselves to maintain the lifestyle we want, puts a tremendous strain on all parts of our system. WIth long term changes in lifestyle and attitude I have found much relief. I, also, after 3 years opted out of meds (beta blockers and Florinef). One of the things that helped me the most was yoga which I do with an instructor who modifies poses for me. The gentle stretching really helps.

I agree about the routine. It doesn't matter how small the task seem, it is important to know what you have planned for the next day. I am home most of the time but I try to have a schedule of activities. And if all you do today is empty the dishwasher, log on the forum, feed the dog/cat and yourself, let it be OK. And be prepared for family and friends to say, "what did you do today?" Don't let it get to you that your activity list now is different from before....this is perhaps the hardest thing I have had to work through but it is important to judge your activities based on your capabilities at this time.

I really think you will find that with time, and rest, and a new routine of smaller activities, Dawn, you will improve. Believe THAT!

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Hi Dawn, Welcome to the forum! My name is Dawn too and I am also from Wisconsin. What part of Wisconsin do you live in? I am in southeast Wi...Racine. I also had to give up a career, but still am able to drive short distances...i feel for you! I would have a really hard time if I was no longer able to drive.I have not worked in four years and I finally gave up my OT lisense. Funny thing is that I have dream that I swent back to work and started treating patients without a lincense. I was soo afraid that I would get caught!!!!

I do know of others who have benifited from using alternative treatments. There is a young woman on this forum who lives in Wisconsin who is doing well taking nutritional supplementation. HEr mom is a nutritionist.

You received a lot of good advice here. It probably is a good idea to try and get dressed everyday. I usually do not get out of my pjs until the afternoon when I have to drive my kids to one of there activities. I would love to staay in them all day. I usually wear something compfortable like a cotton sports outfit.

Counseling and possibly antidepressants are another good sugeestion. You have lost a lot due to this crappy illness. You have a lot to grieve. I have benifited from both of these treatments. I hope you are out of this POTSHOLE soon and can start enjoying life again despite your limitations. I hope you can some releive and start feeling better. Feel free to email me privately anytime.

Best Wishes,

Dawn Anich

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Hi Dawn, Welcome to the forum. I am a nurse too and this year I finally didn't renew my license. It was one of the hardest things I've done, besides giving up driving. I am so sorry you are going through this. We have all been depressed and felt hopeless, (I'm in a major funk right now) but there are lots of people here who know just how you feel and will give you lots of support. I was just like you, have felt like poop forever, but just got up and did what I had to do until I finally crashed. It's very hard to deal with and takes a lot of getting used to. I hope you will use this site and develop friendships and support here. morgan

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Dawn, first welcome to the forum!!! :D We are so glad you found us. I am very POTSY today so excuse me if I dont make much sense!!! I gave up my job as a nurse in June 04. It was one of the hardest things I have ever done in my life. But I knew I couldn't keep going, my body just wouldn't let me. I would end up in the ER. I was misdiagnosed for 18 yrs. Just got my dx last year and that was with much determination on my part to find out what was going on with me. My story is very long and detailed but just to let you know, SSRI's don't work for me either. I am on atenolol and klonopin. They both help somewhat but not like they should.

I am in an EXTREME depression right now and can't drive either. I just got denied for my disability at the reconsideration level but have retained an attorney and I will fight until I win, I have no choice. Have you considered that option?

What is the hyperadregeneric type of POTS? Just wondering because the klonopin doesn't take away all my anxiety nor my panic attacks and over stimulation. Also what is cardio vagal failure?

Would love to write more but this has taken me a considerable amount of time and effort to write. I am just worthless today :(

Once again, so glad you found us and hope to talk with you again in the near future. Please hang in there and don't give up. We are here for you and can truly understand what you are going through-which is nice for a change. You don't feel lijke an alien anymore-atleast this site has made such a difference for me.

Hope you ahve better days in the very near future, positive thoughts are being sent your way along with cyber hugs. :angry:

Danelle

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Guest tearose

Hello dawn and welcome!

I am not operating at my best today but wanted to welcome you and let you know you are not alone! Please do not loose hope and "give up". We all need a break or some time to recharge or rest...but please don't give up! :angry:

I too had a diagnosis long before I really learned how to cope with all these symptoms. Be gently with yourself as you try to learn ways to manage your unusual body and challenges.

I just got back from a lot of driving this weekend and probably won't be more functional till Wednesday...I need to do some catching up on sleep and try to strengthen my endurance. Please read through the archives and keep checking in so we can support you through this rough spot you are in!

hope you are having a better day today.

best regards, tearose

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Welcome Dawn.

Congratulations on finding the forumn. For me this place is where I get my motivation, my inspiration, my empathy and my conviction that I will continue to improve. It may not be a straight line (two steps forward, one step back ... and even sometimes one step forward and two steps back.) But I've come to look at this as a long healing journey .... and in the long run it matters not which road you chose just as long as you continue to go down the path.

I was having a problem with guided meditations tape as well -- which is really ironic because I am also write them! However back last summer I began some zen meditation -- just breathing like the link below...

http://mipham.com/audio/Shamatha-Sakyong_Mipham.mp3

And it was different. It doesn't happen overnight ... some people say it take 6 months or a year to notice the difference. But I do believe that if we can quiet our minds (body) that it will eventually find a way to reprogram the neural networks and heal. I started "sitting" with just five minutes at a time, leaning up against the bed if I needed to. I can now do 20 minutes at a time and I try to do at least two sessions a day. Sometimes the time on the cushion for me is the only time of day that my mind isn't running or telling a story.

Good luck on your own healing adventure. I look forward to hearing what you discover and what works for you.

EM

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