Celebrating Symptomatic Relief... Wanted To Share.

[kellygirl]

The past four days I have felt better than I have since February. My blood pressure right before this post is 109/73 with heart rate of 79 STANDING! Orthostatic vitals have been good. It seems a complete remission of ALL SYMPTOMS! I am able to read, in fact I have devoured an entire novel in 2 days. Able to focus and watch TV, able to exercise, stand in the shower (warm water... not testing fate with hot water). Does this happen with autonomic dysfunction and POTS. Are there symptom free days!

The only thing I have been doing differently is making a really strong effort to let go of emotional stress. I re joined a 12 step program in July and as a result my mind set has changed. I used to be so stressed and always in a state of near panic. I have been practicing mindfulness techniques and lots of relaxation techniques.

For those more experienced do you notice that your symptoms are worse when you are emotionally stressed?

I am happy for the relief.. I am accepting the relief one day at a time and hoping that things stay balanced. It feels good to feel good. I know I can't push it, that I still have to do everything in moderation even though I feel like I want to be doing more.

[Guest ANCY]

So happy for your relief of symptoms! That's exciting! Would not say I'm that experienced but I have recognized on a couple occasions that emotional distress affects my overall symptoms. God bless you with continued healing, you'll be in my prayers.

[kellygirl]

Thank you ANCY. I have not had a break in my symptoms since prior to my official diagnosis.

[SarahA33]

Oh, Kelly, that's wonderful news! A bit of advice, I have those days when I'm feeling extremely well, and then I try to cram in everything I can possibly think of , and then I wind up on the couch for a week. It's a bummer.I use these days as a huge reminder when I'm feeling pretty poorly that they are just set backs. Draw strength from whomever, whenever you are able. To me, some days I feel like I deserve a gold medal for just showering. The exhaustion is unreal.

You hit the nail on the head, moderation. Being the compulsive planning type that I am, I've also had to re-evaluate my goals over the years, long term goals have turned into short ones and that's okay. I still feel a sense of accomplishment when I finish them. Stress can certainly exacerbate symptoms. It's actually listed as a trigger in many of the journal articles.. I'm so happy for you that your taking that class, I hope it helps and that you'll take away a lot of useful information from it.

I have coped an except from DINET's main Page POTS - What Helps, just incases you've not seen it yet. "Countermaneuvers can help to decrease symptoms by lessening the amount of blood that pools in one's legs. Useful countermaneuvers include: standing with your legs crossed, sitting in a low chair, sitting in the knee to chest position, leaning forward with your hands on your knees when sitting and tightening the buttocks, thigh and leg muscles when standing (particularly when standing for any length of time). Research shows that tensing the leg muscles while standing enhances brain blood flow and reduces sympathetic activity (van Lieshout Pott, Madsen, van Goudoever & Secher, 2001.) Squatting can also be a useful countermaneuver, although some patients report an increase in symptoms after squatting.
Compression devices, such as abdominal binders and compression stockings, help to reduce the amount of pooling blood. Compression stockings should be at least 30-40 mm Hg and will work best if they are waist high (Grubb & Karas, 1999). Compression stockings should be fitted to achieve the greatest benefit. BrightLife Direct* carries affordable compression hosiery.

One POTS patient has found relief of symptoms by wearing a G-suit, and she has created a website that details her experience with this compression device. Her website begins "G-suits are pants that can save the life of a fighter pilot. G-suits are pants that have 'saved' my life too." Click here to visit this patient's informative website.
Correcting anemia has been shown to improve orthostatic tolerance (Low, 1994).

Elevating the head of the bed 4-12 inches has helped some POTS patients become less symptomatic. It has been reported that elevating the head of the bed generates mechanisms that expand plasma volume (Low, 2000).

Exercise can be helpful to those with dysautonomia. It is important that one does not let their body become deconditioned, as this will exacerbate symptoms. Tightening and building the leg muscles will help them to squeeze pooling blood back to the upper part of the body. Swimming in water has been reported to help many dysautonomics, however no one who faints should go into water alone. Yaz Exercises and recumbent stationary bikes may be beneficial to some patients with POTS. Aerobic exercise performed for 20 minutes a day, three times a week, is sometimes recommended for patients who can tolerate it (Grubb, Kanjwal & Kosinski, 2006).
Getting plenty of rest is very important for those with POTS. It has been reported that some POTS patients have significant sleep disturbances (Low, 2000). These patients may require more sleep than the average person.
Heart rate watches can help patients identify situations that trigger heart rate increases. These watches are available at sports stores or can be purchased on the Internet.

Ice has reportedly helped some POTS patients. Rubbing ice on the body, especially on the bottom of the feet or neck, may help some POTS patients ward off an episode.

Increasing fluids helps many people with POTS to feel better. Many POTS patients report Gatorade or electrolyte solutions to be particularly helpful. Drinking water has been shown to moderately reduce orthostatic tachycardia in patients with idiopathic orthostatic intolerance (Shannon, Diedrich, Biaggioni, Tank, Robertson, Robertson & Jordan, 2002). Drinking large amounts of water helps to raise blood pressure (Jordan, Shannon, Grogan, Biaggioni & Robertson, 1999). Consuming large amounts of water increases blood volume, which is especially useful in the hypovolemic and those with pooling blood. Some patients report that drinking water before getting out of bed in the morning helps decrease symptoms. Physicians suggest patients drink eight eight-ounce glasses of water daily (Low, 2000). Patients should not drink excessive amounts of water because doing so can cause essential electrolytes to become diluted in the bloodstream, which may affect heart rhythm.
Increasing salt is a treatment used for many people with POTS, however salt is not recommended for all patients." http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helps

Hope this helps,

Sarah

[statesof]

That's awesome kellygirl, I have noticed with myself that being around people and doing something fun that doesn't push me physically, can many times help me feel better physically even if it is one of those days where I wake up and think I'm not going to be going out or design anyone. And I practice a lot of the mindfulness work as well and I do find that it can help me to forget that it can at times help me forget that I am sick. I think this just has to do with not worrying about the future and focusing more on being in the present day/ moment only.

[yogini]

I am glad you are feeling much better and that you are able to do some normal things. A "remission" as you mention is very rare. With POTS/dysautonomia it is normal to have ups and downs - the ups and downs may last a few weeks or months or days. When you first get sick, there are usually more downs.

Total improvement generally takes time (many months/years). Some people are able to find medications which bring them closer to "normal".

Managing stress can be a big help but would not address the underlying medical condition.

[Debbie Rose]

How about an update Kelly?

I found myself feeling normal for the first time in decades when I started florinef (guess I am lucky-no bad side effects) for 2 and a half weeks then slowly stopped working-just started half dose more-I am hoping it works again

When my symptoms became extremely bad I was caring for my Mom with dementia and she was getting worse each month, my sister just moved in again (she has mental issues) and my job suddenly became extremely stressful with new demands and tighter rules.

I definitely know emotional stress makes my symptoms worse. (My Mom is now in assisted living memory care place and my sister knows my health issues now)

[kellygirl]

Hi Debbie Rose,

Since this post I had a couple of days where my heart rate went up to 130, but I didn't exhibit any other symptoms other than accelerated heart rate. I just got labs back and everything was good except for my TSH, which was 17.5, I have been on increased dose for 16 days now. The first few days was when my heart rate accelerated. Of course I am still pacing myself and not overdoing it, not falling into anything that may trigger me off, like hot baths or showers, exposing myself for too long to environmental heat, not spending too much time on the computer, I am still eating well, doing my salt and my liquids and going to all my doctors appointments, and I am making sure to nap during the day and staying on a regular sleep wake cycle and definately avoiding anything stressful! I do need to start walking again, but it is still too hot here. When I am able I walk the mall in the air conditioning, but for now most of my exercise is in walking the dogs and cleaning the house.

I cannot wait to get my thyroid within normal limits to see how I feel. It has been since July that we have been making med adjustments. At that time my TSH was 30. But thyroid dosage adjustment has to be slow. Only one adjustment per month so as not to mess things up worse.

Mostly right now I am just bummed about running to docs for other medical concerns, but slowly I am getting it back down to the main docs being EP and PCP! YEY!

thank you for asking, and please keep us posted on your progress with florinef!

[Debbie Rose]

Hi Kelly, Yes thyroid is a pain. I had to convince my Endocrinologist to continue my thyroid dose at first. I have symptoms of low thyroid-all of them!-with the numbers showing in the lower end of normal. There has been research out there these past few years that labels me in the "Sub-normal low thyroid " category. And once we had the discussion she was willing to keep me on it.I had moved and my previous Endocrin Doc was happy to work with my numbers

Its amazing how a tiny adjustment can do so much.

We have low thyroid in the family and my Mom's was a struggle to manage even though she was a woman of routine and never did anything different to cause the change

Our bodies are so challenging! LOL!

Glad to hear you are still doing so well and you are being cautious and aware-which is so important with such a WONDERFUL change

Hope it stays

Debbie