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

[glenp]

What a great thread


RICH - its nice to see you --I had mentioned this on prohealth at one time and had one possitive response--I wonder if you have experience with it. I have a good rehab specialist who is very open to whatever helps patients - I have problems with incontinence so am not able to consume large amounts of liquid. The physician had suggested that if (my mind isnt supplying me with the name) the apparatuses that you hook up to your taps and supply you with oxygenated water that it would help your body stay more hydrated --( and nothing to do with the alkaline) Have you heard any positive experiences. He didnt say it would help but suggested that if it works the way that the company claims then it should help

glen

 

[glenp]

This is a great thread I will add what helps me.

I know this sounds awful but it has helped me. I am my worse when I first get up - and so long on the pottie!!
I find it really helps to have no seat on the toilet so my bum is lower and then putting my head on my knees, it really helps and I do not deteriorate as I would otherwise in that first getting up phase. I think having my bum lower helps--I notice this with chairs too and loungers - the adirondack chair is better for me and then I put another chair in front to put my legs on. My recliner is awesome. This is probably only specific to some types of dysautonomia

glen

 

[Resting]

The physician had suggested that if (my mind isn't supplying me with the name) the apparatuses that you hook up to your taps and supply you with oxygenated water that it would help your body stay more hydrated --( and nothing to do with the alkaline) Have you heard any positive experiences. He didnt say it would help but suggested that if it works the way that the company claims then it shoud help

glen

I have heard good things about that water apparatus. The one I heard about was for Kangen water and the machine was about $4000.00 dollars. So that precludes me from getting one. Drinking lots of water is supposed to help with blood volume but for me it is a big problem since I have IC (a.k.a. PB). So there again I cannot drink lots of fluid. I do not have high blood pressure so I take Florinef which has helped some (especially my breathing).

You would think doctors would be able to better help POTS patients since it IS measurable. As we all know, if they can't measure something then it "doesn't exist" in the eyes of most medical professionals.

There is a thread about Cooling vests here http://www.forums.aboutmecfs.org/sho...6-Cooling-vest I'm thinking of getting one too, the heat is brutal!!

Thanks for the link Kerrilyn! This would be very useful for me since I cannot tolerate the heat at all and I live in a warm climate.

 

[kerrilyn]

Drinking lots of water is supposed to help with blood volume but for me it is a big problem since I have IC (a.k.a. PB). So there again I cannot drink lots of fluid.

I just posted a thread on this same problem. Drinking lots of water, like we are suppose to, actually makes me feel worse and I can't drink many juices or sports drinks now because I think I have IC, and they cause pain. I wish it wasn't all soooooo complicated!!!

 

[Resting]

I wish it wasn't all soooooo complicated!!!

I second that! If I didn't have IC to complicate things, I know that I would be able to make some improvements.

 

[richvank]

RICH - its nice to see you --I had mentioned this on prohealth at one time and had one possitive response--I wonder if you have experience with it. I have a good rehab specialist who is very open to whatever helps patients - I have problems with incontinence so am not able to consume large amounts of liquid. The physician had suggested that if (my mind isnt supplying me with the name) the apparatuses that you hook up to your taps and supply you with oxygenated water that it would help your body stay more hydrated --( and nothing to do with the alkaline) Have you heard any positive experiences. He didnt say it would help but suggested that if it works the way that the company claims then it shoud help

glen

Hi, glen.

Sorry, I have no knowledge about the effects of these special waters. I've heard lots of claims and counterclaims.

In the near term, I think that consuming extra water and some extra salt is about the best one can do. In the longer term, I favor lifting the methylation cycle block, which will allow glutathione to come up to normal, and this should correct the root causes of POTS.

Best regards,

Rich

 

[taniaaust1]

There is a thread about Cooling vests here http://www.forums.aboutmecfs.org/showthread.php?5386-Cooling-vest I'm thinking of getting one too, the heat is brutal!!

Thanks heaps kerrilyn . In winter where i are right now.. but i may get one just before summer if the POTS is still bothering me.

 

[marthad2u]

Dr. Levine has a progressive exercise program that has had great success. I have been following blogs and communicating with a local doctor on the subject and it seems to really work:


Dr. Benjamin David Levine - Cardiologist Dallas TX
IEM, 7232 Greenville Avenue Suite 435,
Dallas, TX 75231 -
(214) 345-4619
http://www.texashealth.org/body_secure.cfm?xyzpdqabc=0&id=2322&action=detail&ref=3463

 

[BEG]

Dr. Levine has a progressive exercise program that has had great success. I have been following blogs and communicating with a local doctor on the subject and it seems to really work

Hi martha2u, When I hear the E word (exercise) I normally go runnning and screaming as far away as possible, but I am curious about this. Does Dr. Levine have a program for POTS? What does it consist of?

Thanks.

 

[Resting]

When I hear the E word (exercise) I normally go runnning and screaming as far away as possible....

LOL! So do I!

Hi Brown-Eyed Girl, I am not familiar with Dr. Levine's program but I went through 'Workwell' run by Staci Stevens (creator and CFS sufferer). An overview is in this thread, post #35. It is based on heart rate and the use of a heart-rate monitor and diaphragmatic breathing. All "exercises" are done lying down and are taken at the person's individual pace. Some are as simple as constricting (tightening) muscles or raising your arm over your head, again, while lying down. You take it slowly so there is no payback. If there is any then you are moving too fast.

I am mostly bedridden and this has gotten me from being unable to move (completely bedridden) to very gradually using resistance bands and then on to the Pilates Reformer. If you are not as sick then you would be able to do more but all are still done lying down so the POTS is not aggravated. You use the breathing technique (discussed earlier in this thread) before, during, and in between these "exercises." These techniques help prevent you from becoming deconditioned and strengthens the core muscles so any movement such as walking requires less energy.

I know you were asking about Dr. Levine's program but I figured the more options the better.

 

[Sallysblooms]

I have been taking Adrecor and it is really helping my P.O.T.S. I am pleased with my progress so far. The CoQ10, carnetine, etc really helped but this is really helping. I cam looking forward to seeing how I am as time goes by.
I hope the neurotransmitters will be better balanced as time goes by.

 

[Resting]

I have been taking Adrecor and it is really helping my P.O.T.S. I am pleased with my progress so far. .

I've never heard of Adrecor (the name makes it sound like it is for the adrenals). What does it specifically help you with? Thanks for letting us know of a useful treatment!

 

[Sallysblooms]

I pasted some info. about Adrecor. These neurotransmitters help the nerves/blood vessels so the POTS is better. This is doing a great deal of good, only five days or so, so far. I am really happy. I have used Travacor also, but right now I am using just 5HTP. That is also in Travacor. I think this is the key to unlocking m POTS problems for me. I have been on two programs and wonderful results and lots of good supplements, guided by my doctors. I am really finally hopeful. The difference is amazing. Everyone is different, but this was my key. As I said, the rest of my body is supported with supplements for immunity, homone balance etc. Also key, was the Coq10, Carnetine, Lipoic Acid, etc. They have made my heart stronger.

I still wonder if my hysterectomy was the cause of all of this. Things went haywire after that. Started out fine, but a few months later, I started the POTS problems.

ALSO, Hubby and I are happy that my blood pressure is back to normal. At my urologist today, it was good and low. That used to NEVER happen. Things are going great. We are so excited. This time last year, I was horribly ill. In bed. We had NO idea what was happening then.

Here is the info., Resting.

AdreCor supports adrenal function, including the production of the adrenal neurotransmitters epinephrine and norepinephrine, with a combination of amino acids, vitamins, and nutrients.
AdreCor does not contain any amino acids that support the inhibitory neurotransmitter system.

Product Ingredients

AdreCor contains tyrosine (N-acetyl-tyrosine), this amino acid is a precursor to the catecholamines, which includes epinephrine and norepinephrine. These neurotransmitters are involved in the stress response and produced by the adrenal gland. AdreCor also contains glutamine, to support stress recovery, and EGCG. EGCG is a natural component of green tea and is a neuroprotective antioxidant. EGCG has also been studied for its ability to stimulate metabolism. Another green tea component in AdreCor is alpha-GPC (alpha-glyceryl phosphoryl choline), this natural product has been found to increase nervous system function by increasing the function of the neurotransmitters choline and acetylcholine,

AdreCor also contains Rhodiola rosea, to decrease the effects of stress and fatigue on mental performance and histidine, to support the stimulatory neurotransmitter histamine, and a complex of B vitamins including B12 and pantothenic acid (vitamin B5) to support adrenal function.

 

[taniaaust1]

that's great to hear you've found something which has helped

 

[Resting]

Thanks!

I pasted some info. about Adrecor. These neurotransmitters help the nerves/blood vessels so the POTS is better. This is doing a great deal of good, only five days or so, so far. I am really happy. I have used Travacor also, but right now I am using just 5HTP. That is also in Travacor. I think this is the key to unlocking m POTS problems for me. I have been on two programs and wonderful results and lots of good supplements, guided by my doctors. I am really finally hopeful. The difference is amazing. Everyone is different, but this was my key. As I said, the rest of my body is supported with supplements for immunity, homone balance etc. Also key, was the Coq10, Carnetine, Lipoic Acid, etc. They have made my heart stronger.

I still wonder if my hysterectomy was the cause of all of this. Things went haywire after that. Started out fine, but a few months later, I started the POTS problems.

ALSO, Hubby and I are happy that my blood pressure is back to normal. At my urologist today, it was good and low. That used to NEVER happen. Things are going great. We are so excited. This time last year, I was horribly ill. In bed. We had NO idea what was happening then.

Here is the info., Resting.

Hey Sallysblooms!
So sorry it has taken me so long to respond. I haven't been well.

Hooray for you! Adrecor sounds like a wonder supplement. I am so happy for you. Any victory for someone with this illness is a victory for all! I can't believe that you got so much help from the addition of that one pill. I would be really excited too. I hope it continues to help you.

Are you able to walk now with no problems or at least walk further?

I am wondering if it would be a wise choice for me or not. Last time my cortisol levels were checked, they were high--which is weird for having had this for 10 years. I am not sure if that supplement would be helpful in my case. I will have to research it more when I am up to it.

But still, I am REALLY happy for you. It could very well have been the hysterectomy that sent you spinning. I have heard that done at a young age, they can do some strange things to your body. Maybe this is just what you needed to sort of "reset" things! Yay!

Happy, happy Joy, joy!!!!!

 

[Sallysblooms]

Hey resting! I am so sorry you have been ill!!! Not good. I had a bad weekend, but better now. I see the CFS and POTS as a zig zag stitch on a sewing machine! Up and down, but going forward and healing.

Adrecor for ME is very good. You can google it. I would not be able to tell anyone that it or anything could help them. I am guided by two doctors so I get tested and helped by them. 5htp and Adrecor have been great for my neurotransmitters. We are all different. Adrecor helps the adrenals and norepenephrine. It is a supplement. The noreph. is needed for the blood vessels just like my Alpha Lipoic Acid helps the nerves that helps the blood vessels. With POTS, you need the blood to go to the HEAD.

As far as walking, it has helped a lot. I cannot walk far, but easier and also, I have only taken it for a little while. I feel less dizziness for sure and that is good. Carnetine helps that and brain fog. They all overlap a bit so it is hard to tell, but I talked to my doctor a LONG time on the phone the other day. She helps me to know what helps what. I do much better now and I hope to do better and better.

I take about 37 supplements and that includes compounded hormones. GOSH those have helped. I was incredibly ill for a year. Too sick to get to my CFS doc. four hours away. Other docs in town were clueless. There is not just a couple of supplements that I needed. I needed MANY, so many problems. For instance, my doc and I think I really needed a larger amount of CoQ10. My heart and chest pain has been SOOOOO MUCH better. More energy. If I can just keep improving!

I do hope you have a long rainbow after your storm...... My pastor talked about the rainbow after the storms and I think about that a lot. I have a necklace that has pretty stones in a rainbow. I also collect things that say "Hope."

 

[Resting]

Sallysblooms,

I forgot I wanted to ask you how you take the 5HTP. Do you take it at night or with your meals? I have used a good brand in the past but it didn't help or I should say it started to help then flipped, did the opposite and kept me awake. It is essentially tryptophan (sp?) and is a precursors to the inhibitory neurotransmitter, serotonin. I definitely need those as well as the excitatory neurotransmitters. Isn't that strange how you need both types within the same illness?

That is funny! I have done the same thing with the word HOPE. We all need it. I like your hope-rock. Our hope can be placed on THE ROCK! I am not up to going to church but I listen to a great preacher on TV who is doing a series on Job and suffering. It has been encouraging. It sounds like that was a great message for you with the rainbow. There truly is always hope. I am glad that you are seeing results that help remind you of that. Your victory encourages me and reminds me of the hope that is real!

I like your zig zag analogy. I either need more zigs or more zags! LOL! Maybe once I figure that out I will be getting somewhere!!

I also wanted to say thank you so much for all of the information you provided! So, thank you!

 

[Sallysblooms]

I take 5HTP in the morning and after dinner. I take my supplements on a schedule three times a day.

Adrecor in the morning and lunchtime. You are welcome for any help. It is a full time job to read and learn isn't it? Forums are a great place!

 

[Resting]

OK, Got it!

Thanks again!