Postural orthostatic tachycardia syndrome -P.O.T.S.

[Sallysblooms]

I am looking for more ideas to get better, not prescriptions but supplements. I have had CFS for 18 years and for the past year, I have had P.O.T.S. on top of that. D Ribose and Carnetine and all of my other supplements have helped.

 

[kat0465]

wow, im from southeast Texas also i was beginning to think i was the only one with cfs/fibro around this area. sorry your dealing with pots also, it's a tough road isnt it.
i can tell you that coq10, omega3, and grapeseed seems to help my heart quite a bit.

when i run out of the coq10 i really notice a difference!
Kat

 

[Resting]

My suggestion isn't a supplement but it did help me.

I went through a program that taught me to use a heart rate monitor (purchased from a sporting shop, nothing fancy needed). Then you control your breaths using diaphragmatic breathing (a.k.a. belly breathing or deep breathing). This controls your heart rate. When I first heard of what they wanted me to do I thought---waste of time. But it does help. For me I had to keep my pulse under 110. Seeing the pulse rate on the watch/monitor being directly affected by how controlled my breathing was, really helped me see that I could help control my heart rate.

This is how athletes train. It takes time and practice but has helped keep my heart rate down without meds. After a while you learn how to do this without needing the monitor.

 

[Sallysblooms]

Thank you. I need to start the CoQ10 again. The d ribose and carnetine sure have me less tired! I seem to not sleep as well though. I feel so much better however.

I just bought a nice heart rate monitor. It has the chest strap. However, I am not sure what "normal " is with walking and standing for others. Guess it doesn't matter since it only matters how I feel while standing and walking.

It's kind of fun to see the numbers go up and down. When sneezing it goes up, ha. Then down fast.

I hate not being able to walk much.

I have seen that deep breaths do lower the pulse, but it goes back up.

Thanks

 

[glenp]

Thats interesting resting. Would the wristband pulse rate monitors work for that?

glen

 

[VillageLife]

I know you said you dont want prescriptions but i do take a medication called Bisoprolol 10mg a day, this does work, before I was on this, I was much worse.

 

[aiden424]

I get really severe pots at times. When it gets really bad all I can do is stay laying down. Atenolol has helped quite a bit and magnesium has helped some too.

 

[Sallysblooms]

I do take Benicar for blood pressure. I also take a good magnesium also. I have great supplements. I thank everyone. Keep adding ideas in case I don't know one of them. You never know what the real key is. I love to keep reading about it.

 

[Resting]

Thats interesting resting. Would the wristband pulse rate monitors work for that?

glen

I have a monitor that straps around the chest over the heart. Polar is the brand that I have but I'm sure that doesn't make a difference. The "watch" part that goes around the wrist gives you the readings. I would think any type would do the trick as long as you can see the readings.

It does take practice. I was told to keep breathing this way (whenever awake) which will help keep the readings down. It is a matter of retraining the body and brain so that it eventually becomes automatic. The monitor should be used as a reminder for you to breathe deeply all of the time. If your reading goes too high then the activity you are doing is too much and if possible, you should take a break by sitting or lying down or make adjustments to your routine. When I brushed my teeth, for example, my pulse would really soar, so I had to sit at the edge of the tub rather than stand at the sink. All of course while breathing deeply. Like I said, it does take a lot of practice but with perseverance it will be worthwhile.

Tip: When I started doing this I would breathe in through the nose and out through the mouth (not while brushing my teeth though LOL!) Eventually I was able to do it so I inhaled and exhaled through my nose. I found it easier to learn that way.

 

[Resting]

I just bought a nice heart rate monitor. It has the chest strap. However, I am not sure what "normal " is with walking and standing for others. Guess it doesn't matter since it only matters how I feel while standing and walking.

I just looked this info up in the booklet that came with my monitor. Since you mentioned just standing and walking I won't include all of the exercise rates. But for the "light" zone which includes mild sweating the heart should be no higher than: For a 20 year old=120 BPM, 30 years=114, 40 years=108, 50 years=102, 60 years=96 ...So normal for walking would be even lower than these numbers. I can't keep mine below 115 right now when walking. So choose a reasonable number to start with and then go from there. Hope this helps some.

 

[Sallysblooms]

You just keep breathing deeply? That will help POTS over time? I know it is good to do for many reasons.

I am SO glad I have a wicker chair for brushing my teeth etc.

Thank you for the information about the heart rates.

 

[Resting]

You just keep breathing deeply? That will help POTS over time? I know it is good to do for many reasons.

As hard as it is to believe, continuing to do this will help bring down your pulse just as it does for athletes. It is not a cure all. But it helps significantly enough to make it worthwhile. It sounds like you are taking some very good supplements too. You seem really knowledgeable about the subject. It was a great idea for a thread, so thank you!

 

[Sallysblooms]

I am really lightheaded this morning, even sitting. I have made progress and usually I can sit and feel good. Guess things change minute by minute though. Yesterday, I went out to eat dinner with my hubby and usually, for a restaurant I walk. Well, since you are supposed to drink a lot of water for POTS, I do. SO, I had to go to the bathroom. Too far to walk and I didn't feel good after walking to the booth. He had to go to the car and get the wheelchair and take me to the bathroom. What a pain. But, that w.chair lets me get out and do things.

I do wish I could find a light, titanium one for less that $2,000. I want a nice looking and light one.

I continue to work hard and learn so I can get better.

I have read it can happen with CFS and Epstein Barr. It happens other ways too of course. I hope it will fade away with time as it does for some people.

I TRY to remember to breath deeply.

 

[Resting]

I have to use a wheelchair whenever I am out too and sometimes inside. (and my poor husband, bless his heart, keeps banging the wheelchair into everything). I have one called Fly Weight Series by DRIVE. I am not sure what it is made of though. I put a cushion on it to help with comfort. Mine must be a lot junkier though because it was around $200 I think. I have a love/hate relationship with my wc. I am glad to have it, otherwise I couldn't even make it to doctor appointments, but I really hate that I need it.

Did you ever have testing done to check your blood volume? I am going to have a SPECT scan done sometime in the near future for that. I am not sure what they will do from there. They are talking about the IV saline solution as a possibility. Not sure if I'll go that route but I am also desperate to have a life again so who knows.

I had to laugh at your multiple bathroom trips, I SO know how that goes. Your situation sounds similar. I have IC on top of it so I am always needing to use the bathroom.

I applaud your avoidance of meds. I try to as much as possible but without Florinef I can't breathe. So I have to have that one.

I hope your lightheadedness gets better soon!

 

[Sallysblooms]

No blood volume or testing yet. My doctor wants me to come in. The stress will make it worse so since I know what is wrong, I see no reason to go through all of it. A cardiologist figured it out months ago. I thought he was nuts, but as I read about it and watched many videos, I am 100% sure. Tests will not help. I am doing all I can.

I have no problem with anyone taking medicine if they can. I just have a TERRIBLE time with 99% of all meds. After major abdominal surgery, I took pain meds for a few hours and paid for it. Got VERY ILL. After that, NO pain med. It is very hard.

I have found that my supplements really are helping. Some days are pretty decent. Some, like today, not so much, ha. It has helped knowing what is wrong! I can stand up SLOWLY, move slowly, use a w.chair, not get hot, etc.

I take Benicar for high bp. with the POTS. THANKFULLY, I can take it!!!

I have a good attitude though. I love to dress up and go out to eat. Takes little effort. I used to garden, no more. But in our new home, we had landscapers redo the back yard. I love it. I have to have pretty things around inside and out. I love to decorate my home. It looks so nice. I do have to have someone clean now. I miss doing that. Hubby cooks. This is my island of calm.

 

[Resting]

You are right that you don't need tests. My neurologist is really pursuing this and with neurologists it is all about the tests. It is amazing to me that the facts can be staring them in the face but they have to have expensive tests to prove (to themselves) what they already can measure by pulse etc.
No one knows more about your own body than you do. I am glad you found things to help. L-Carnitine is so expensive that I stopped taking it. I wonder if that was a mistake. I take so many supplements, it's ridiculous. Sorry to hear about you not being able to take meds. I can't take many but gee, I can't imagine not being able to take 99%. YIKES!

I see you are from Texas. I'm in NC. I can't stand the heat especially since the illness got so bad. I have to stay indoors where it's cool. I can't imagine how hot it is where you are and for a longer chunk of the year. Heat makes me feel REALLY bad. I am glad you get out and go to dinner. It must feel wonderful! I can on rare occasions. For those moments I can pretend all is well.

I used to love gardening. Now my husband does the labor. I point, he digs! I miss the hands on part a lot but it is a nice compromise. I am truly grateful to look out the windows at beautiful flowers, bushes and trees. It does make it a little easier being inside all of the time. I am an artist so I love to decorate too. Can't do much of it now but my hubby is a good sport about moving things around. I like variety being stuck indoors all of the time. My husband cooks too but only out of necessity. This is probably the thing I miss most. Cooking was an art form to me. I miss doing it and eating my cooking vs his!

It does sound like you have a great attitude and a supportive spouse!! That is so important!

 

[Sallysblooms]

Glad you agree about testing. It is not that hard to figure this out vs Chronic Fatigue. I have had lots of tests for diff. things and at this point, I need to be good to myself and not overdo things like that. Not like they could change anything anyway.

I don't remember how much my LCarnetine is. I get it from my CFS doc. I do know my D Ribose is expensive. We spend a lot, but the supplements work and support my immune system and hormones.

Yes, it is hot and humid. I go out to sit on the porch with my hubby and little dog, front or back. It's is nice to get out, but LATE in the eve. How nice you are an artist. I can still grow my violets. Hubby had to take over for a year, but I can do it now. I have over 100. Inside plants. Yes, flowers and landscaping is wonderful. The whole wall of our living room and kitchen are windows so the yard is easy to see! Birds too. Yes, I love to go eat out and dress up and forget things. For a long time I couldn't and now I love to do that and to see life outside!

My hubby has to do a lot outside too. So sweet. I used to do it. Flowers are like oxygen to me.

 

[Resting]

WOW! I love your pink hydrangea pic! I am guessing that you took the photo from your own shrub. You did a really nice job. So neat!

OK, I love houseplants and have some. I'd have more if I were well. BUT 100 violets? You must have a really nice sunny room to house all of those. It must be heavenly!

I agree with your quote. One form of happiness is a warm puppy (another is lots of flowers!). My hubby and I have a small (50lb.) Lab. He is such great company. I don't know what I would do without him.

How much D Ribose do you take? Does it help increase your energy? I stopped taking it because I wasn't sure it was helping. I only took one scoop a day so maybe that was too little? I didn't have any guidance so I was just guessing. I still have half a container left.

I am going to attemp to add a picture but I will do it on a seperate post. I have accidently deleted the post 3x now in trying to add the picture! LOL!

 

[Resting]

Here goes...

Puppy happiness! Flower happiness!



LOL...not what I was expecting!! But at least they appeared this time!

OK, so how do I make them bigger?

 

[Sallysblooms]

Yes, that is my Hydrangea. Your pictures are great. What a darling doggie! Lovley flowers!

You can click on your pics to see them large. I added mine from a link to photobucket with the little frame on top of the reply box. I want to know how you made yours small to click large!

I grow my violets under lights. They grow perfectly that way, even and happy. This is my furbaby.