toomanyproblems Posted June 30, 2016 Report Share Posted June 30, 2016 I've been definitively diagnosed with POTS for several years but don't know what type. I'm practically 100% sure it's hyperadrenergic POTS. I can't sleep, I feel wired all the time even though I get to the point where my body won't respond anymore. I'm just exhausted. My heart rate is through the roof whenever I stand up. None of the standard meds has helped. I also have a huge number of other health problems. I can almost feel the adrenaline being dumped into my system and it only seems to be getting worse over time. I'm extremely symptomatic from the POTS. I'm completely miserable from my other problems. Is there anything anybody has found that will help tamp down some of this adrenaline response at least? That would help a lot. I've done research. I have extensive background in clinical and academic laboratory medicine and have a PhD in biochemistry. I can't find anything to help that I haven't already tried. To make things worse, I also have grade 3 (severe) gastroparesis and am not digesting oral meds well, if at all. I'm on a liquid diet and may be heading for a feeding tube or TPN. As my problems continue to accumulate, I feel like I'm circling the drain. Any help appreciated. I'm at my wit's end. Main current problems include: POTS, RSD/CRPS type 1, gastroparesis, Elhers-Danlos syndrome, polyglandular autoimmune disease type II (including, Addison's disease, thyroiditis, early ovarian failure, celiac, possibly myasthenia gravis and a few others), undifferentiated connective tissue disease. Current meds: Predisone, hydrocortisone, florinef, synthroid, T3, gabapententin. (I've discontinued everything else since I'm not absorbing my meds well.) Quote Link to comment Share on other sites More sharing options...
corina Posted July 2, 2016 Report Share Posted July 2, 2016 Have you tried Clonidine? I've been told this could be an effective med in HyperPOTS. Don't know if you tolerate this med, asking your doctor(s) is key of course! Sorry you have so much going on. Quote Link to comment Share on other sites More sharing options...
angelloz Posted July 2, 2016 Report Share Posted July 2, 2016 When I was at my worst..totally wired, no sleep etc... I even felt uncomfortable sitting..wanted to be up and moving but that made things worse. I found if I forced myself to sit still get a back rub from a family member etc..it helps tamp it down. I still have this to a degree but has improved over time starting at about year four. Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted July 3, 2016 Author Report Share Posted July 3, 2016 11 hours ago, corina said: Have you tried Clonidine? I've been told this could be an effective med in HyperPOTS. Don't know if you tolerate this med, asking your doctor(s) is key of course! Sorry you have so much going on. I actually tried Clonidine yesterday and today and it did help! I only took 50 micrograms which is half the normal dose. My BP is normally high and even higher when I stand along with my high HR and it helped both some. It also helped me not feel so wired and I actually took naps both days with the help of gabapentin. Sleep is healing! I'm at a point where things that help one problem make others worse, unfortunately. Clonidine helped the POTS stuff but made the swelling and pain worse in my RSD leg. I'll still take that trade off. I'm happy for any relief. I had too many carbs today and that makes swelling and pain worse from the RSD though so I'll try to do better tomorrow. I'm just so restricted in my diet it's hard sometimes. Thanks! Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted July 3, 2016 Author Report Share Posted July 3, 2016 On July 2, 2016 at 11:19 AM, angelloz said: When I was at my worst..totally wired, no sleep etc... I even felt uncomfortable sitting..wanted to be up and moving but that made things worse. I found if I forced myself to sit still get a back rub from a family member etc..it helps tamp it down. I still have this to a degree but has improved over time starting at about year four. Yes, I understand exactly what you mean. I never feel sleepy like I used to even when I'm so groggy I can't walk straight. If I force myself to lie down and do yoga breathing I can sometimes go to sleep but for some reason it's hard for me to settle and do that. I guess I'm just not used to not feeling the way I expect to feel when I used to go to sleep. Unfortunately I don't have anyone to rub my back so I'll have to figure out ways to do relax by myself. Thanks. I don't know why this is getting worse now. I've had POTS symptoms for at least ten years relapsing and remitting, and constant for the last three and a half years. Quote Link to comment Share on other sites More sharing options...
yogini Posted July 4, 2016 Report Share Posted July 4, 2016 I think with a lot of these medications you have to try them for weeks or months to see if they work. Also, one medication might not work by itself, but might work in combo with another med. For example, beta blockers and florinef sometimes work together. If one beta blocker doesn't work, another might. It is really personal so you have to work through it with your doctor. If you don't have a good doctor, maybe someone in your area can help you find one. I don't know about gastroparesis but a lot of people have experience - so you may want to post separately and also search through old POSTS. Once you get gastro in control it can often help your POTS. Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted July 10, 2016 Author Report Share Posted July 10, 2016 On July 3, 2016 at 8:02 PM, yogini said: I think with a lot of these medications you have to try them for weeks or months to see if they work. Also, one medication might not work by itself, but might work in combo with another med. For example, beta blockers and florinef sometimes work together. If one beta blocker doesn't work, another might. It is really personal so you have to work through it with your doctor. If you don't have a good doctor, maybe someone in your area can help you find one. I don't know about gastroparesis but a lot of people have experience - so you may want to post separately and also search through old POSTS. Once you get gastro in control it can often help your POTS. Technical difficulties on the forum made me stay away and I forgot this post. Thank you, yogini. I have tried some combinations of meds with no help. I will continue to try others as my docs and I decide if they might be useful. Also I'm not absorbing meds well so that's a problem. However, the clonidine did help tamp down some of the adrenaline response; it just made my RDS leg swell way too much. Like five or six lbs more fluid which was very uncomfortable. I've gotten to the stage with so many problems that what helps one thing makes another worse. So I guess I can take the clonidine when I feel like I'm spinning off the planet, but not on a daily basis. Most of all reading, "Once you get gastro in control, it can often help your POTS" really hit a note. I think this is true, I just can't get there. I'm eating different diets now to try to figure out the best ways to manage the gastroparesis (I have searched through old posts). Main current problems include: POTS, RSD/CRPS type 1, gastroparesis, Elhers-Danlos syndrome, polyglandular autoimmune disease type II (including, Addison's disease, thyroiditis, early ovarian failure, celiac, possibly myasthenia gravis and a few others), undifferentiated connective tissue disease. Current meds: Predisone, hydrocortisone, florinef, synthroid, T3, gabapententin. (I've discontinued everything else since I'm not absorbing my meds well.) Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted July 10, 2016 Report Share Posted July 10, 2016 Hi there, Very sorry to read you've had a rough time. Are you near any of the major clinics-- Cleveland, Vanderbilt, Mayo? Not sure if traveling is an option for you, but just wanted to suggest this for the value of testing and specialists. I had my diagnosis reconfirmed at CC (hyper) and was also diagnosed with Hypovolemic POTS. I was told by my POTS specialist that its not uncommon for subtypes to overlap. What I've found most helpful is to suppress the adrenaline. I was going to suggest Clonidine as well as Propranolol. I've had great success with both, as well as Ativan for the palpatations and tremor. Very pleased that Clonidine was useful for you! Sorry to hear of the swelling ,though. I can relate to the " trade off feeling "-- as it can exacerbate my Raynaud's. Thought to share something I recently learned after having taken this med for 4+ years, that it does expand blood volume, which is a bonus. If the swelling becomes too problematic with the oral route- maybe you could talk to your dr. about the clonidine patch? I wonder if the absorption through the skin would make a difference in side effects or not. Propranolol is rx'ed for many POTS patients and I've found it to be the most effective w/ least amount of side effects. Others simply cannot tolerate it. There's been a lot of discussion on the forum about this. http://circ.ahajournals.org/content/120/9/725.full This is a paper written by the doctors at Vanderbilt, Propranolol Decreases Tachycardia and Improves Symptoms in the Postural Tachycardia Syndrome, It is from 2009 but they are currently doing an updated study on this. Good Luck to you, and sorry about the IT issue putting a damper on things! Sarah Quote Link to comment Share on other sites More sharing options...
yogini Posted July 10, 2016 Report Share Posted July 10, 2016 Sorry to hear your challenges. It is frustrating even with basic POTS, so I can't imagine. I don't know anything about gastro issues - I think there is a separate forum. Maybe that would be a good resource for you. Quote Link to comment Share on other sites More sharing options...
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