Hi, was wondering if anyone else was diagnosed with POTS along with their lupus. Just recently was evaluated by a Cardiologist for sinus tachycardia and spikes in my heart rate. He said my heart was fine and that I have Postural Orthastatic Tachycardia Syndrome. When I researched it, I found that it is an autonomic disorder, and I do have other neuropathy issues with my lupus. Dr said to increase my fluid and salt intake as well as my activity/exercise level (haha) and no follow up needed. I feel a little like he left my hanging. I know it is not life threatening but someone to monitor it would be great. Any thoughts or comments would be greatly appreciated. Hope you are all doing the best that you can.
I have samilar trouble of sinus tachycardia along wid spikes in heart rate. My cardiologist said my heart is fine. I was given beta blocker but it didnt help much.
My reuhmy started a new med which had methylcobalamin along with other salts. This seemed to help. After a long time now my pulse rate stays below 100. Earlier it was always 120+ and quite often cross 150.
I am not sure if this would help you the same way it worked for me, but you can ask your doc about this.
You are in my prayers. Stay strong.
Hi Stacey, I was diagnosed with POTS several years before I was diagnosed with Lupus. Increasing your fluid and salt intake is very helpful but there are some medications you can take as well. The doctor who diagnosed me is the expert on POTS and is an Autonomic Neurologist (there are only a few neurologists in the country who are autonomic neurologists). The doctor is Dr. Robert Shields and he is at Cleveland Clinic. I highly recommend seeing him. I was diagnosed 8 years ago and before I saw Dr Shields I couldn’t stand up without passing out and could barely get out of bed. He got my POTS from being a debilitating disease to a very manageable one. He started me on three medications to control it and now I only require one medication to control the tachycardia. If you have any questions about POTS and Lupus please don’t hesitate to contact me.
I have had POTS for 21 years. It came on abruptly. I could not stand up. My heart rate went over 165bpm every single time. Sitting up was 120bpm. It was horrible! I was and am treated by electrophysologists. I’m sure you had a tilt table test? I’m controlled for the most part with 3 beta blockers a day and flutocortisone. Unlimuted salt.
Thanks for the information and encouragement. I was seen by an electrophysiologist but he said he did not need to see me back because that was not his expertise he specializes in arrythmias. He spent about 10 mins with me after we waited an hour to see him, ugh!! No I did not have a tilt table test. My heart rate spikes are not always related to standing up. Thinfs like showering and drying my hair cause my heart rate to spike. I do sometimes get lightheaded when standing. I sent an email to my GP to see if he can monitor this or if I need to see a neurologist. Waiting to hear back from my GP.
I also have lupus and POTS. I was offered propanolol (beta blocker) like Pollen Grains mentioned, to slow down the tachycardia, then I got a call telling me to go off because it makes my specific heart damage worse. He gave me mostly the same advice as you got. They just have no clue how fast our heart rate goes when we try to exercise, and that people with lupus have really bad exercise tolerance anyway. We just don't recover from it the way other people do. Through my studies, I've learned that an endocrinologist can be helpful, but I can't get to the closest major city that has one.
Wow Pollen Grains, these are natural remedies, which I like. Methylcobalamin is vitamin B12. I take sublingual (goes under the tongues, much stronger than pills) vitamin B complex. I was told an endocrinologist would probably prescribe some supplements that our bodies are lacking.
Pollen Grains said:
My reuhmy started a new med which had methylcobalamin along with other salts. This seemed to help.
I tried a beta blocker for one day, per my GP but did not tolerate it well, so not in a hurry to try a new one. I will have to look into the Mehtylcobalamin, I stopped taking my Vit B supplement because the last time I had bloodwork done to check it my levels were high. I also have issues of heart rate spikes while resting. Yesterday I didn't feel well at all and spent most of the day on the recliner, in the middle of the afternoon out of no where my heart starts pounding and racing. Heart rate was 134. Is this normal with POTS.
Was wondering what medication you are currently own. Mine currently is not as severe as yours was in the past. Also did you, or do you take salt tablets. Not sure I am going to get enough salt in my diet just be adding in to food, probably will only use it at dinner time. I have an appt with a GI dr at John Hopkins Sept 17th. I am hoping that someone there will be knowledgeable about automonic disorders.
Courtney M. said:
Hi Stacey, I was diagnosed with POTS several years before I was diagnosed with Lupus. Increasing your fluid and salt intake is very helpful but there are some medications you can take as well. The doctor who diagnosed me is the expert on POTS and is an Autonomic Neurologist (there are only a few neurologists in the country who are autonomic neurologists). The doctor is Dr. Robert Shields and he is at Cleveland Clinic. I highly recommend seeing him. I was diagnosed 8 years ago and before I saw Dr Shields I couldn't stand up without passing out and could barely get out of bed. He got my POTS from being a debilitating disease to a very manageable one. He started me on three medications to control it and now I only require one medication to control the tachycardia. If you have any questions about POTS and Lupus please don't hesitate to contact me.
No I didn't tolerate it well either, so I was glad to get the phone call telling me to go off. Those racing heart episodes, I get them too, for no reason. I don't know if they are common in POTS though. Salt does help me some. I have to sprinkle some into my hand and eat it sometimes, because my blood pressure gets quite low when my heart rate goes high. I hope you get some answers at JH! If you do, share with us please who can't see such a specialist. My racing heart causes terrible sweating and rosacea rash on my face. In my case, I think it's due to every chemical and hormone being out of sync (endocrine system). Adrenaline just shows up or drops off when it wants to. Google HPA Axis dysfunction. That condition might resemble your problems too. You should also ask "Pollen Grains" what type of meds and salts she is taking.
Holding onto Hope said:
Sheila,
I tried a beta blocker for one day, per my GP but did not tolerate it well, so not in a hurry to try a new one. I will have to look into the Mehtylcobalamin, I stopped taking my Vit B supplement because the last time I had bloodwork done to check it my levels were high. I also have issues of heart rate spikes while resting. Yesterday I didn't feel well at all and spent most of the day on the recliner, in the middle of the afternoon out of no where my heart starts pounding and racing. Heart rate was 134. Is this normal with POTS.
The only medication that I still take for POTS is atenolol which is a beta-blocker that controls my tachycardia. The tachycardia is the only POTS symptom that I experience everyday. The dizziness, severe fatigue and passing out when I stand up are the symptoms that vary. I have periods of time where I don't have any episodes and then there are days where I barely function. I have learned over time that there are things that trigger my POTS symptoms which has been a helpful tool in managing it.Some of my triggers are hot/humid weather because sweating effects our electrolyte levels so during the summer I increase my daily fluid and salt intake (I drink a lot of Gatorade instead of water because of the higher amount of electrolytes in it), I've never taken salt tablets because I am good about getting enough salt in my diet and drinking Gatorade (which has a good amount of sodium in it) however, my doctor said I could use salt tablets if I felt I needed it. I have several doctors I see at Johns Hopkins and to my knowledge they don't have a neurologist there who specializes in autonomic disorders. I live in the DC area and I have looked for a doctor who treats autonomic disorders and the closest doctor is the doctor I told you about who diagnosed me and still treats me to this day, Dr. Robert Shields who is at Cleveland Clinic. I highly recommend seeing him if you are willing/able to go to Cleveland. I recommend him because having both Lupus and POTS can be a frustrating/challenging combination because having just one of those diseases can be very debilitating so having both is twice as frustrating/challenging and having a doctor who can make one of those conditions manageable in my experience is a really good thing. Before I saw Dr. Shields I spent a week in a hospital in Arizona going through a lot of tests and none of the doctors could figure out why I couldn't stand up without passing out. I am from Ohio originally and Cleveland Clinic like Johns Hopkins is known for figuring out and being able to treat rare and complicated medical conditions so the doctors in Arizona had me flown to Cleveland Clinic and the day after I got there they had me see Dr. Shields and he knew right away that I had POTS. After about 3 months of treatment he got my POTS to a manageable, non-debilitating level. If you have any other questions please don't hesitate to ask me cause I am more than happy to answer them. Also if you do want to see Dr. Shields I can help you out.
Holding onto Hope said:
Hi Courtney,
Was wondering what medication you are currently own. Mine currently is not as severe as yours was in the past. Also did you, or do you take salt tablets. Not sure I am going to get enough salt in my diet just be adding in to food, probably will only use it at dinner time. I have an appt with a GI dr at John Hopkins Sept 17th. I am hoping that someone there will be knowledgeable about automonic disorders.
Courtney M. said:
Hi Stacey, I was diagnosed with POTS several years before I was diagnosed with Lupus. Increasing your fluid and salt intake is very helpful but there are some medications you can take as well. The doctor who diagnosed me is the expert on POTS and is an Autonomic Neurologist (there are only a few neurologists in the country who are autonomic neurologists). The doctor is Dr. Robert Shields and he is at Cleveland Clinic. I highly recommend seeing him. I was diagnosed 8 years ago and before I saw Dr Shields I couldn't stand up without passing out and could barely get out of bed. He got my POTS from being a debilitating disease to a very manageable one. He started me on three medications to control it and now I only require one medication to control the tachycardia. If you have any questions about POTS and Lupus please don't hesitate to contact me.
Thank you so much for all the information and your willingness to be so helpful. I am in a bit of a Lupus flare that started Sunday so I am feeling a bit overwhelmed with it all. Sunday I was on the recliner all afternoon and out of no where my heart just starting racing, it went to 134 and I was doing nothing but watching TV. I will def keep the Cleveland Dr in mind if things don't start to improve. I can't drink regular Gatorade because I also have Fibromyalgia and the sugar worsens the Fibro symptoms. Guess I could try Powerade Zero. How much sugar do you try and get in your diet on a regular basis.
Was wondering what is the name of the medication that your rheumatologist started you on that has been helpful with the tachycardia.
Thanks, Stacey
Pollen Grains said:
I have samilar trouble of sinus tachycardia along wid spikes in heart rate. My cardiologist said my heart is fine. I was given beta blocker but it didnt help much. My reuhmy started a new med which had methylcobalamin along with other salts. This seemed to help. After a long time now my pulse rate stays below 100. Earlier it was always 120+ and quite often cross 150. I am not sure if this would help you the same way it worked for me, but you can ask your doc about this. You are in my prayers. Stay strong.