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I heard something very good today that may bring..


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As some of you may or may not know , this POTS has hit me very hard at a hard time in my life. I am a professional musician with the band H20 . We have just signed with Columbia Records and will begin our tour and cd release in December. I talked with some people in the industry and asked them if they could get me just a conversation with a POTS Specialist or someone that knows " almost " everything about POTS. We I got to talk with this doctor by the name of Phillip Low and his team. The good news out of the whole convo was the fact they are developing a pill to get rid of POTS symtoms in 99% of the patients. The recent studies have showed that a major part of POTS is lack of fluids to vital parts of our organs and one of them being your heart. Some would call this dehydration and others would call this hydrated orgram retention , I think that is the name of it , anyways what this peal will do is put everything about to your body that is needed . These doctors studies are showing this is more than a nervous sytem disorder , a whole lot of this is about your bodys ability to hydrate itself and its vital organs. They have done a lot of test to show this and he is suppose to be sending me a copy of this study to show the proof that this is in fact the truth. This he said will possibly be the cure for POTS. As I am sure many people have told you all that there is no cure for this well indeed there may very well be one very very soon. Of course the doc said that some people this may cure to where they will not have to take this medication there whole life but some people will have to take this there whole life. He has said that all these doctors the whole time have been giving wrong meds to people with POTS . Now I am not at all saying quit taking any meds you are taking because that would not be safe nor anything else because he said some of these meds help but its not truly getting the real problem. When I receive the docs I have got permission to post them on this site so you all can see , this med has been tested so far on 23 POTS patients and has worked on all the patients and all 23 patients have no symtoms of POTS while taking this pill and have been taken it side affect free and POTS free for 1 month. Just thought that this was news worth sharing and I for one can not wait until this comes out so I can live a normal life again. Like I said as soon as I get this study and all the fact ( 3 or 4 days ) I will post it .

Chad and once again sorry for the very bad spelling

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Has anyone on the board participated in this study??? If so, would you be willing to share your experience?

I look forward to hearing more about the tests and the results. I would think if this info is accurate that the Mayo would be contacting some of us to participate in trials??!!

The latest thing I saw from Mayo (Dr. Low) was a study about Mestinon but many of us have tried. Some have had success and some have not but certainly not 99%

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Hi,

I am not aware that Mayo is working on a magical pill but if there is something that works on 99% of us, well I'll take it!

I hope they are not talking about Mestinon because this was the new fad drug 2 years ago and it did not succeed very much in helping many of us.

I am open to a magical pill with no side effect.

Thanks for sharing and please keep us posted.

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Its definetly interesting since I have been told time again to "stop drinking so much water"

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Please be careful about posting any information here that you cannot yet back up with the research. I am open minded, but find it hard to believe that Dr. Low has such a pill in the works and none of our fairly well connected group has heard about it. Given that many of us have POTS with several varieties of etiologies, it's highly unlikely ANYONE will get a 99% cure rate.

Please post the reference to the research.

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Folks, I googled Mayo Clinic Dr. Philip Low and got the following:

http://www.mayoclinic.org/news2003-rst/1954.html

It appears to be discussing pyridostigmine(?) aka Mestinon.

Other stuff listed from the google search also mentions pyridostigmine. We've all heard about that. Maybe ChadK is talking about something else?

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Hi Chad;

First of all, I found it very ironic that you have POTS and you are in a band with the name of H2O!! Sorry, that just struck a chuckle in me. Congrats on your record deal and CD release. I hope it is very successful for you.

Also, thanks for the info. I have not tried the medication Mestinon that some have mentioned here. But, I am glad to hear that there are doctors looking for a medicine that will hopefully work. You said that they are DEVELOPING a pill, so they must still be working on it. That is incredibly positive. I am sure there are many many people here that may not have tried Mestinon or any other drugs geared towards POTS and dysautonomia and will take this information to their physicians.

Again, thanks for the ray of hope. And thanks for having the ability to have a converstation with the best in the field of POTS and then sharing it with us. Having an influencial voice, to get the word out, is extremely important to educate doctors about Dysautonomia and POTS.

I will be looking for your CD. Take care.

KathyP :)

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Sadly, Mestinon is not a 99% cure for dysautonomia, POTS, NCS, OI, etc. Many here have tried it. Unfortunately, it's far from a cure for many. Some people have done well on it though. From the members who are here who've tried it, I'd say more didn't tolerate it than those that did well.

Sorry if I sounded harsh above, but part of my job here as a moderator is to say "show me the data".

Congrats on you're band's deal. That sounds like a blast. I hope you're able to thoroughly enjoy this time of your life. :)

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Guest Finrussak

Hi everyone

What I think is being hinted at is the issue of "hypovolemia" that many of us may have...the inability to maintain blood volume...which is why super hydrating can help. BUT, I have done an extensive PubMed search and have found no hint of preliminary studies based on this...so I await Chad's copying the actual research article for us to read!!! Sounds interesting. Also, It will be most helpful to those of us who are more about blood volume and less about neuroendocrine stuff...i.e. the "hyperadrenergic" types may not be as helped...unless the volume issue is somehow driving their chemical misfirings.

Most of Dr. Low's studies in the past 18 months have been on very small test populations, which I find odd given the volume of poeple going to Mayo with these symptoms. But then again his reputation among neurologists at the main state NJ med school is that he chooses his patients carefully, i.e. the ones who will give him the results he may be looking for. I also have to add that I personally believe his prelim studies on mestinon 24 and 18 months ago, overexaggerated patient satisfaction...due to side effects...I dont know if those under his care were so bad off that the effects were bareable given their improvement OR he happened upon those who had less probs with the drug. Again the issue is of small population size within the study. We should be hopeful, but with extreme caution, as we may all be on this rocky ocean of "dysautonomic disfunction" but we are all piloting different boats!!

MM

I agree with and appreciate your vigilance...so many of us are desperate and willing to quickly grasp onto something that may help...but informed caution is always best!! If I happen upon any prof journal articles Ill try to link them to you first...

Chad

I am glad you are sounding more positive!!! Good luck with your band and have fun with it!!!

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Hello everyone,

I think I've heard of the study that Chad is referring to when I saw Dr. Stewart in NY. Dr. Stewart had mentioned that Dr. Low was about to do a new study on a new drug. The doctor I saw at Mayoclinic in Minnesota, Dr. Munger, also knows of a drug called Ivabradine that is under study overseas. Hopefully if it is a success it will come to the US. Although Dr. Munger wasn't sure if any of our pharmacuetical companies would ever distribute it because they don't feel they would make enough money off of it.

Chad,

I really look forward to reading what you have to post as you receive the information. Congrats on the record deal. Are you new to the band? I think I've lost count of how many times I've seen H2O perform in various places. I used to be a promoter in South FL, ran a small indie record label, did some management and booking, etc. before I got sick. I had to stop because the stress and hectic schedule was too much. I can't imagine having POTS and having to be on stage and on tour a lot! I have a hard time even attending shows sometimes with the loud sound, lights, and just being upright for so long. :) Hope this finds you well!

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Guest Finrussak

as ever the scientist, my Interest was peaked...here are excerpts from pub med prof journals re: Ivabradine:

Drugs. 2004;64(16):1757-65. Related Articles, Links

Heart rate lowering by specific and selective I(f) current inhibition with ivabradine: a new therapeutic perspective in cardiovascular disease.

DiFrancesco D, Camm JA.

Ivabradine specifically blocks cardiac pacemaker cell f-channels by entering and binding to a site in the channel pore from the intracellular side. Ivabradine is selective for the I(f) current and exerts significant inhibition of this current and heart rate reduction at concentrations that do not affect other cardiac ionic currents. This activity translates into specific heart rate reduction, which reduces myocardial oxygen demand and simultaneously improves oxygen supply, by prolonging diastole and thus allowing increased coronary flow and myocardial perfusion. Ivabradine lowers heart rate without any negative inotropic or lusitropic effect, thus preserving ventricular contractility.Ivabradine was shown to reduce resting heart rate without modifying any major electrophysiological parameters not related to heart

[this may be a prob for some folks...directly affects the heart!!!]

Br J Pharmacol. 2004 May;142(1):107-12. Epub 2004 Apr 5. Related Articles, Links

I(f) channel inhibitor ivabradine lowers heart rate in mice with enhanced sympathoadrenergic activities.

Du XJ, Feng X, Gao XM, Tan TP, Kiriazis H, Dart AM.

Experimental Cardiology Laboratory, Baker Heart Research Institute, Commercial Road, Melbourne, Victoria 3004, Australia. xiaojun.du@baker.edu.au

1. Ivabradine selectively reduces heart rate (HR) by inhibiting the cardiac pacemaker I(f) current, thus prolonging the duration of spontaneous depolarization in the sinus node. The activity of ivabradine under conditions of enhanced sympathoadrenergic activity has been addressed by investigating the effects of repeated oral administration in mice with sympathoadrenergic activation due to either stress, cardiac-restricted overexpression of beta(

[this doesnt seem to be related to hydration or blood volume at all.

even spelling it without the "e" turned up a Russian article on "Bradycardic" drugs...i.e. lower resting heart rates simlar to beta blockers but with a differnt pathway.

Ill keep looking

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From what I've read as well, Ivabradine doesn't have anything to do with hydration or blood volume. I'm really curious to hear about Dr. Low's research. Dr. Munger informed me about Ivabradine focuses on the sinus node and treating tachycardia/palpitations. I'm allergic to beta blockers so this was a drug that he was keeping an eye on for me. It doesn't seem as though it will be available in the US anytime soon though. I was curious if anyone else had their doctor mention this drug to them.

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IVabradine sounds like it concentrates on the hearts role in maintaining rate. I think many of us experience a low BP. If the Ht RT does not increase enough to get BP up and blood to our brain and such than we are still comprimised.

My whole system isn't right. When taking a Beta blocker my heart rate slowed down until I stood up and my BP was up to normal and higher (when lying down), but as soon as I stood up the ht rt jumped up and the BP dropped further faster..

A pill that balances all the systems would be great but its going to have to start at the control center for our bodies total function. Once the brain is sending the right signals then we will get a improvement. However, many of us have had to deal with this Dysautomia for so long that we have substained damage to other our organs. Most of that damage cannot be reversed unless its removed or fixed surgically. We will have to continue on other meds to alleviate the other symptoms.

I hate to be negative. I just hate pills and magic cure alls. I am on so many meds just like the rest of you all. I hate them and would love to throw them in the toilet. There is hope and I have faith that soon they may have a drug that stops all of this. I pray that it is soon and that many DR's start looking into all of their patients symptoms so that they can catch this stuff before it gets so bad like it is any many of us.

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Dont worry , as soon as I get this I will post it . I was just excited because I hate the fact that so many of us have to suffer and have a small hole of hope that this drug will work. As for when this or if this comes out I do not know but I do know on all the people it has been tried on it has worked . I am not 100 % sure of the specifics of why it works but that is what the study will be good for once I get it:) I hope you all have a good day and just pray that this med comes out and works like they say it may. Will be posting the study in about 2 days .

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Chad,

Congratulations!

Thanks for sticking your neck out and giving us the information. I pray that he really has found such a "miracle pill". I hope Dr. Low was not talking about mestinon either. When he last saw me as a patient, he did not mention fluid balance in regards to mestinon. Mestinon just acts in the peripheral nervous system to increase acetycholine, the main neurotransmitter for the parasympathetic nervous system. Increasing the activity of the parasympathetic nervous system would then help to downregulate our overactive sympathetic nervous system. I have had some small benefit from mestinon.

A lot of us have had our hopes dashed in the past, so I better be careful not to shed tears of joy just yet, although that was my first inclination.

Karyn

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Chad,

You are in an excellent postition, with the contacts in your life, to bring the attention to our disorder that we have not been able to obtain. I wish you much success with your band and look forward to your posting.

I have an appt. Thursday w/ my dysautonomia doctor, who also suffers from it as well, I will ask him if he has heard anything.

Take Care,

Jill

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Thanks Karyn for that info. I'm still anxious to see what report Chad is given.

I'm disappointed though.....as most of us know already (as many of us have already tried this drug) it certainly isn't a 99% cure rate by any means!!

I'm not knocking people trying it because it has helped a lot of people but I haven't talked to anyone with POTS that it made them so much better that they got a huge quality of life back from it.

Still hoping there is something new out there though!

Guess we have to wait and see what Dr. Low sends to Chad.

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Karyn,

Thanks for going to the source and posting for the rest of us. It is dissappointing to have ones hopes raised only to find it IS Mestinon. I have only just started this medication and am slowly titrating up to the theraputic dose but have been feeling more symptomatic on even a tiny dose. I was about to discontinue it, however as Dr Low has such high hopes for it ,I will continue on it for now and hope improvement comes . Your post certainly helped me with this decision.

Margaret

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