Has anyone else been diagnosed with PoTS and does treating that help your EM? Also, is anyone taking Mestinon to treat Pots?
what is POTS?
Postural orthostatic tachycardia syndrome. The autonomic nervous system fails to regulate for gravity and heat, so blood pools in the lower extremities and heart rate increases to try and compensate. POTS makes it difficult to stand still without becoming faint. I also develop difficulty with my vision, and very uncomfortable leg pain while standing. In adddition, I can’t eat much at one sitting without getting really sick.
nanci said:
what is POTS?
Hi Melissa,
I was just diagnosed with POTS two weeks ago, and the neurologist wouldn’t even address the EM because he’s hoping that treating the POTS will help the EM. I would love to hear about what helps your POTS, but am sad that it isn’t helping your EM.
Melissa Vastag said:
Hi! I have been diagnosed with POTS. I do take medication for it. However, it has not helped my EM at all.
Hi, I have been diagnosed with OI (Orthostatic Intolerance) with a mildly accelerated heart rate upon standing. My blood pools which makes it difficult to stand for even short periods of time. My neurologist believes I developed autonomic deconditioning given my inability to walk or lower my legs during the day. My EM started after a foot injury which left me immobile for many months. I am not on any medications for OI, but have increased my salt intake (I buy Himilayan salt at Whole Foods. Love it), drink Ceralyte daily (rice based electrolyte drink), tons of water, and ride a recumbent bike daily (up to 1 hr a day). I make sure my feet are not flaring when I ride the bike. The exercise seems to help and makes me feel better overall. Has your doctor recommended an exercise program?
Great advice! Yes, I exercise 6 days a week, alternating bicycling on my recumbent bike and muscle strengthening calisthenics. I am sure that I would not function without the regular exercise. I also drink tons of water, but I know that I need to somehow increase my salt intake. I’ll look for the Himilayan salt.
kb904 said:
Hi, I have been diagnosed with OI (Orthostatic Intolerance) with a mildly accelerated heart rate upon standing. My blood pools which makes it difficult to stand for even short periods of time. My neurologist believes I developed autonomic deconditioning given my inability to walk or lower my legs during the day. My EM started after a foot injury which left me immobile for many months. I am not on any medications for OI, but have increased my salt intake (I buy Himilayan salt at Whole Foods. Love it), drink Ceralyte daily (rice based electrolyte drink), tons of water, and ride a recumbent bike daily (up to 1 hr a day). I make sure my feet are not flaring when I ride the bike. The exercise seems to help and makes me feel better overall. Has your doctor recommended an exercise program?
How do you do the muscle strengthening calisthenics? I’m interested in trying this. I have also noticed a difference since I have been on Ceralyte daily (much healthier than Gatorade). You can purchase this online.
I do squats, leg lifts (both while laying on my side and my back), push ups and tummy tucks. Nothing too difficult or special, but I am consistent and do them four days a week, with 2reps of 30 for each. I would recommend starting with two reps of 5 though, and gradually increase. I found the Ceralyte on Amazon, but will also look to see what my local health food store carries. It looks like something I should add to my diet.
kb904 said:
How do you do the muscle strengthening calisthenics? I’m interested in trying this. I have also noticed a difference since I have been on Ceralyte daily (much healthier than Gatorade). You can purchase this online.
I called Ceralyte direct and they gave me a membership and discount. I use the Ceralyte 50. Here is the link just in case you want to research further: http://www.ceraproductsinc.com/whatitdoes/index.html
I need to figure out some exercises to increase the muscle mass in my left calf so maybe some of those exercises will help. Thanks!
My neurologist also mentioned elevating the head of my bed. Have you done this? If so, has it helped?
Hello,
I was diagnosed with pots a year and a half ago. DINET.org is a good resources for this.the better my POTS is the better my EM. I take 1-6 gms of salt a day with equal water 1-6 liters of water. I am also on steroids for autoimmune so I retain salt from that. Thermatabs are over the counter salt pills I use. Also large salt crystals allow me to take more salt without tasting it as much.I also take midodrine when my blood pressure doesn’t stay up well. When my bp is low or high my EM is bad. I also take a beta blocker to keep my heart rate down. Mestinon is one of the many options for pots.
Thank you for sharing, Sha. I am trying to figure this all out. The Mestinon seems to be helping my EM, but not the POTS. I think it's because I am sweating again, and that raises my heat tolerance. I can even feel my feet sweat now, and the skin on my feet has become much softer (where it used to be scratchy and dry from flares). But, I still have difficulty standing and my heart rate still soars (up 42-66 BPM from supine to standing).
Sha said:
Hello,
I was diagnosed with pots a year and a half ago. DINET.org is a good resources for this.the better my POTS is the better my EM. I take 1-6 gms of salt a day with equal water 1-6 liters of water. I am also on steroids for autoimmune so I retain salt from that. Thermatabs are over the counter salt pills I use. Also large salt crystals allow me to take more salt without tasting it as much.I also take midodrine when my blood pressure doesn't stay up well. When my bp is low or high my EM is bad. I also take a beta blocker to keep my heart rate down. Mestinon is one of the many options for pots.
I'm not diagnosed with POTS but have tried to find a doctor in my area with a tilt table and capable of properly evaluating me to see if it's part of my problem. I'm currently on a trial of meds for mast cell activation and it's helping my EM significantly. Also it helps my flushing and GI problems and I can be on my feet longer without feeling weak. As far as my EM, on these meds I don't trigger as often to foods, the EM episodes are less severe and my heat-timing threshold has changed so that I can handle slightly warmer temps than before with no flare and can handle very hot temps for longer (although not long).
The Vanderbilt autonomic center and also POTS doctor, Blair Grubb, say that there is a subtype of POTS that involves mast cell activation. I think it's either Hyperadrenergic POTS or a subtype of that subtype. So my recently being put on the mca meds only boosted my suspiscion that POTS may be an issue for me, though mca isn't always associated with it. Vanderbilt has a research article online about it and Dr. Grubb has a YouTube interview about it. You can google them if interested.
I wish I could find a local POTS doc! I hope you find that POTS treatment helps your EM.
Kentuckian,
Thank you for you comment, and especially for your earlier post to this site that made me aware of POTS! I had never heard of POTS before, and your post prompted me to research it and ask the John's Hopkins doctor about it at my EM appointment. The Mestinon has brought my heart rate down somewhat, and has made a huge difference with my EM. I am now sweating, and so am more heat tolerant and have fewer flares. In fact, where my feet used to start tingling and feeling uncomfortable each afternoon by about 4pm, they now feel pretty normal (as long as it's not too hot) until about 8 or 9 pm. My heart rate still shoots up when I stand, so I keep moving when on my feet and have to rest regularly as I get exhausted. But it's hard to describe how incredible it feels to be able to sweat. Since I'm not normally a heavy sweater, I didn't even realize that I wasn't EVER sweating, though I thought it odd that I'd awaken in the night feeling very hot but never be sweaty.
I'm glad that the MCA meds are helping your EM. I think I can relate to just how wonderful it feels to find something that makes a difference, even thought a lot of questions remain. I wish you luck in finding a doctor that can evaluate you for POTS!
Kentuckian said:
I'm not diagnosed with POTS but have tried to find a doctor in my area with a tilt table and capable of properly evaluating me to see if it's part of my problem. I'm currently on a trial of meds for mast cell activation and it's helping my EM significantly. Also it helps my flushing and GI problems and I can be on my feet longer without feeling weak. As far as my EM, on these meds I don't trigger as often to foods, the EM episodes are less severe and my heat-timing threshold has changed so that I can handle slightly warmer temps than before with no flare and can handle very hot temps for longer (although not long).
The Vanderbilt autonomic center and also POTS doctor, Blair Grubb, say that there is a subtype of POTS that involves mast cell activation. I think it's either Hyperadrenergic POTS or a subtype of that subtype. So my recently being put on the mca meds only boosted my suspiscion that POTS may be an issue for me, though mca isn't always associated with it. Vanderbilt has a research article online about it and Dr. Grubb has a YouTube interview about it. You can google them if interested.
I wish I could find a local POTS doc! I hope you find that POTS treatment helps your EM.
I'm so glad you found something that's helping. I do know what a relief that is! The more I read and hear about other EMers experiences, the more I think that Dysautonomia and mast cell activation are big causes of my EM and other health problems, possibly related to my inherited connective tissue disorder. I'm going to have to increase my efforts to find a POTS doc. My EM is much better since getting on mca treatment, but my goal now is to get rid of the EM completely.
Tullilou said:
Kentuckian,
Thank you for you comment, and especially for your earlier post to this site that made me aware of POTS! ..
That is a great goal! I hope you can find a POTS dr. in your area. I, too, think that mca treatment is key, and plan to pursue that road.
Kentuckian said:
I'm so glad you found something that's helping. I do know what a relief that is! The more I read and hear about other EMers experiences, the more I think that Dysautonomia and mast cell activation are big causes of my EM and other health problems, possibly related to my inherited connective tissue disorder. I'm going to have to increase my efforts to find a POTS doc. My EM is much better since getting on mca treatment, but my goal now is to get rid of the EM completely.
Tullilou said:Kentuckian,
Thank you for you comment, and especially for your earlier post to this site that made me aware of POTS! ..
Thanks for the encouragement Tullilou. I need that every now and then! Have you thought of going to SC to see Dr. Afrin about the possibility of an mca problem? He's who I'll probably end up with for that. Just have to find a POTS guy nearby now.
Tullilou said:
That is a great goal! I hope you can find a POTS dr. in your area. I, too, think that mca treatment is key, and plan to pursue that road.
Kentuckian said:I'm so glad you found something that's helping. I do know what a relief that is! The more I read and hear about other EMers experiences, the more I think that Dysautonomia and mast cell activation are big causes of my EM and other health problems, possibly related to my inherited connective tissue disorder. I'm going to have to increase my efforts to find a POTS doc. My EM is much better since getting on mca treatment, but my goal now is to get rid of the EM completely.
Tullilou said:Kentuckian,
Thank you for you comment, and especially for your earlier post to this site that made me aware of POTS! ..
No trips to SC, but I will talk to my Johns Hopkins neurologist about MCA drs. since he admitted that he doesn’t have the background to do any testing or diagnosis in that area. I would imagine that there is somebody at JH that can help me. But I’m all doctored out right now and so will give it a rest for a few months. It is nice to have more pieces of the puzzle now, and to see improvement in regards to the EM.
Kentuckian said:
Thanks for the encouragement Tullilou. I need that every now and then! Have you thought of going to SC to see Dr. Afrin about the possibility of an mca problem? He's who I'll probably end up with for that. Just have to find a POTS guy nearby now.
Tullilou said:That is a great goal! I hope you can find a POTS dr. in your area. I, too, think that mca treatment is key, and plan to pursue that road.
Kentuckian said:I'm so glad you found something that's helping. I do know what a relief that is! The more I read and hear about other EMers experiences, the more I think that Dysautonomia and mast cell activation are big causes of my EM and other health problems, possibly related to my inherited connective tissue disorder. I'm going to have to increase my efforts to find a POTS doc. My EM is much better since getting on mca treatment, but my goal now is to get rid of the EM completely.
Tullilou said:Kentuckian,
Thank you for you comment, and especially for your earlier post to this site that made me aware of POTS! ..
He's likely to assume that any very good allergist or a hematologist can help you, but that isn't necessarily true because the disorder is so very new and therefore most docs think it's difficult to test/treat and don't want to try or else they have old info (like from 2010). You may get lucky though. If you try to seek out someone and then don't trust the docs' level of knowledge on MCAS, you can always check the web and find out if anyone in your area is treating it successfully. I know how great it is to have some improvement and I'm really happy for you!
Tullilou said:
No trips to SC, but I will talk to my Johns Hopkins neurologist about MCA drs. since he admitted that he doesn't have the background to do any testing or diagnosis in that area. I would imagine that there is somebody at JH that can help me. But I'm all doctored out right now and so will give it a rest for a few months. It is nice to have more pieces of the puzzle now, and to see improvement in regards to the EM.
Kentuckian said:Thanks for the encouragement Tullilou. I need that every now and then! Have you thought of going to SC to see Dr. Afrin about the possibility of an mca problem? He's who I'll probably end up with for that. Just have to find a POTS guy nearby now.
Tullilou said:That is a great goal! I hope you can find a POTS dr. in your area. I, too, think that mca treatment is key, and plan to pursue that road.
Kentuckian said:I'm so glad you found something that's helping. I do know what a relief that is! The more I read and hear about other EMers experiences, the more I think that Dysautonomia and mast cell activation are big causes of my EM and other health problems, possibly related to my inherited connective tissue disorder. I'm going to have to increase my efforts to find a POTS doc. My EM is much better since getting on mca treatment, but my goal now is to get rid of the EM completely.
Tullilou said:Kentuckian,
Thank you for you comment, and especially for your earlier post to this site that made me aware of POTS! ..
Thanks for the tip! I will keep that in mind when I speak with the neurologist.
Kentuckian said:
He's likely to assume that any very good allergist or a hematologist can help you, but that isn't necessarily true because the disorder is so very new and therefore most docs think it's difficult to test/treat and don't want to try or else they have old info (like from 2010). You may get lucky though. If you try to seek out someone and then don't trust the docs' level of knowledge on MCAS, you can always check the web and find out if anyone in your area is treating it successfully. I know how great it is to have some improvement and I'm really happy for you!
Tullilou said:No trips to SC, but I will talk to my Johns Hopkins neurologist about MCA drs. since he admitted that he doesn't have the background to do any testing or diagnosis in that area. I would imagine that there is somebody at JH that can help me. But I'm all doctored out right now and so will give it a rest for a few months. It is nice to have more pieces of the puzzle now, and to see improvement in regards to the EM.
Kentuckian said:Thanks for the encouragement Tullilou. I need that every now and then! Have you thought of going to SC to see Dr. Afrin about the possibility of an mca problem? He's who I'll probably end up with for that. Just have to find a POTS guy nearby now.
Tullilou said:That is a great goal! I hope you can find a POTS dr. in your area. I, too, think that mca treatment is key, and plan to pursue that road.
Kentuckian said:I'm so glad you found something that's helping. I do know what a relief that is! The more I read and hear about other EMers experiences, the more I think that Dysautonomia and mast cell activation are big causes of my EM and other health problems, possibly related to my inherited connective tissue disorder. I'm going to have to increase my efforts to find a POTS doc. My EM is much better since getting on mca treatment, but my goal now is to get rid of the EM completely.
Tullilou said:Kentuckian,
Thank you for you comment, and especially for your earlier post to this site that made me aware of POTS! ..