Knellie

Hi everyone! I’m asking on behalf of my sister. She recently moved to Orlando, Florida and she is looking for a doctor for her MCAS and POTS. Anyone know any good ones in the area? Even if they are a couple of hours away any suggestion would be great! Thanks!

Hey guys- I have been wanting to get on a diet to help me lose weight. Have any of you guys found a diet that doesn't aggravate your symptoms and helps you lose weight? Thanks!

@MikeO - This may not exactly be the answer you are looking for but I thought it was worth mentioning. I took B12 for a while for fatigue (and because I too was slightly deficient) and it didn't really help my symptoms. My doctor then put me on something called Trimethylglycine or TMG. He said that basically TMG is like B12 but further along in the cycle so it is easier for your body to use. I personally haven't noticed a difference, but it could help you. I take 500mg a day and it is just a supplement, not prescription. Don't know if that helps but I hope it does

@Nelson G. - While I believe that symptoms can be made worse by stress and mental health issues such as anxiety, depression, and other things, I know that dysautonomia is not caused by those things. I have had anxiety for a while, and in fact, my anxiety started after I got dysautonomia, not before. I think doctors sometimes have a tendency to say things like that because dysautonomia is a disease of the nervous system. Your nervous system controls every single system in your body, so naturally if your nervous system is messed up, then almost every other system is going to be messed up too. Doctors have a hard time seeing that the body is all connected, so sometimes they can say things like because they truly don't know what is going on. Dysautonomia is a complicated disease that is very misunderstood. I once thought that it was all in my head too, so I stopped going to doctors thinking, "If it is all in my head and I just ignore it, it will all go away." In fact it did not, but only got worse. If I could make my disease go away by going to therapy and taking anti-anxiety meds (which I have also tried, with no effect), then I would. But it doesn't seem to work that way.

Hey Everyone- Today I am asking a question on behalf of my sister. She has Mast Cell Activation Syndrome and is on Claritin 2x a day and Singulair 1x a day. I don't know the exact dosing on each. After these 4 months of being on Singulair, she realized that it had been affecting her emotions pretty terribly. She has been more irritable, angry, and anxious on this drug. It had taken down her histamines quite a bit and even made her feel a little better physically better. I looked it up and it does have these psychiatric symptoms down as part of a black-box warning. She will be going off of it starting tomorrow, but I have read some horror stories about going off of it online. The main question I wanted to ask was if you have been on it, has it been terrible getting off? If so, how did you deal with it? And, what other drugs do MCAS people use? She is very worried about going off of it and feeling really bad physically. Thank you so much for your help!

Hey guys! I have had stomach issues for a while but more recently have had bad reflux. I mentioned it to my doctor and he recommended a barium swallow test. Has anyone had this before? Did the Barium make you nauseous? Did it actually show any good results, and how long did it take? Thanks!!

Hey guys!! I hope you are all feeling okay! I just had a question for all you POTsies out there. It is winter where I live right now, and because of that it has been extra dark. I also just have a hard time in winter with the cold, seasonal depression issues, and just all the ugly symptoms that come with POTS. I have been so extremely tired for the past week or so it is almost too much to handle. Any tips? I am currently on Iron, TMG (which is kind of like B12), Vitamin C, Vitamin D, Midodrine, Verapamil, and Licorice root. My doctor was hoping that the iron and TMG would help with the fatigue but it doesn't seem to. Any help is greatly appreciated!! Thanks!!

@KiminOrlando - I just got put on Singulair and Levocitirizine (Xyzal). I have been on them for about 4 days and so far I have had two terrible migraines and I have had weird mood changes which I believe are from the new meds. Have you been on your antihistimines very long? Does it get better? It sounds like you aren't doing well on them either. I was thinking about messaging my doctor and asking them if I should get off of them. Sorry I wasn't helpful, although it was nice to know that I am not alone when it comes to these weird antihistimine reactions. Sorry you are dealing with this too!

@MTRJ75 - I ride my recumbent bike 3 days a week and I do strength training the other two. I do it at home because I have a recumbent bike and I can do the strength training exercises. I attached the exercise program my doctor sent me. I go really gentle and do the bare minimum but it still makes me feel really bad. POTS_Exercise_Program.pdf

Okay so I know that the exercise protocols are supposed to make you feel crappy for a while but this is making me feel really bad. I can barely function. I started at the very beginning of the protocol, at week 1, day 1. If this is the easy part then the hard part is going to kill me off. How long does it take to feel better? I have classes starting in August and I can't feel this bad and do my classes at the same time so it has to get better. Any tips/advice/experiences? Thanks in advance

@MikeO - Where do you get the +H2O stuff? I can't find it on google.

What are your favorite ways to get electrolytes? I tried Liquid IV for a while but it was quite expensive and high in sugar and seemed to have little effect for me. What works for you guys? Thanks

Do you have Ehlers Danlos Syndrome? That can cause things to shift around in your eye and cause vision problems. Might not be that helpful but can be something to look into. Make sure the eye doctor knows about your EDS though, because that makes a difference. Good luck, I'm sorry you are going through this.

@peachychou123 - Oh no! That is so scary!! And I just have to say I admire you advocating for yourself! When something is wrong with your body (aside from the normal stuff) then you got to fight for it! Go you! Praying for you to have a speedy recovery!!!

Hey Everyone! Does anybody else get this? I sometimes have a weird pain in my wrists, in the very center between the two bones. It will happen sometimes at night after a long day, and it'll feel like a muscle or nerve pain (I know there is a difference, but it feels like a mix between the two.) It will also happen sometimes when I just bend my wrists and it will hurt so bad that I can't bend it without almost crying. When that happens it sometimes feels more like nerve pain. I don't know how to describe it super well. I mentioned it to my doctor and he is going to order some x-rays in January, but I don't think it will show anything. Has anyone ever experienced this? My doctor thinks I may have a type of hypermobility, but my Beighton Score is only 2. Maybe it is due to that? Maybe some arthritis? Any tips or ideas?

Hi Guys- I have a couple quick questions. Though I finally found a medication that helps a little bit for the first time!! Yay!! Its called verapamil. I was wondering if anyone has ever been on it, and how long you can be on it. Also, my doctor is upping the dose right now but he said he might add another medication on top of it called Midodrine. I have heard some people on this forum talk about being on it before, do you like it? Was it worth it? Also, one of my other questions is that today I was napping and I woke up with a really high heart rate. I wasn't having a nightmare or anything so it wasn't from that. I just woke up and it was really high and I was having palpitations all over the place. This has never happened to me. Also, I have never really had low bp. Usually its relatively high like 133/85 or so, but today it was the lowest I have ever seen it when I was at the doctor. It was 106/58! I have never had it like that and I was feeling extra POTsy today. I also had chest pains on and off. Maybe its because of the weather changes? Does anybody have any ideas?

@MikeO - I used to have temperature changes after eating as well, though I would get cold. My sister would be freezing after she ate when she was younger too. I don't know what could help it. I'm assuming its just your nervous system freaking out due to food. If you have gastro problems as well that would make sense that your body just isn't good at responding to those kinds of things. I'm sorry this happens to you, it sounds pretty miserable. I hope that gets better!

@CallieAndToby22 - That's a good idea. My sister and mom both have PCOS, and I wouldn't be surprised if I have it because I feel similar to them except for some added on neurological symptoms. Thanks for the info! I hope you can find some help for your health as well!!

@Pistol - I wanted to thank you as well for taking the time to write that out! That is going to come in handy in my next flare! I am so sorry you are feeling crappy!! I hope that you feel better soon!! We'll keep you in our prayers!

@CallieAndToby22-I use the meditation app Smiling Mind, and its free. It has helped a lot with my anxiety from POTS. It has exercises that range from beginning to expert meditations. It was recommended to me by one of my doctors and I have used it ever since.

Hey Guys!! Does anyone know what Innappropriate Sinus Tachycardia is? My doctor diagnosed me with it along with my POTS and I don't know what it is. Thanks!!

@cmep37 - yes, I am in that range. My doctor said that we were going to treat this like POTS though, because it technically is.

@cmep37 - I have not tried either of those medications. I think my doc said that if this doesn't work he would try me on something else. I was just worried because my TTT was borderline - I hit the threshold right at the end of the test, although my HR shot up 30 beats at the beginning and stayed that high. I hit the 40 right at the end. I hope I can find a medication that works!!

Thank you guys! It is interesting to know that different beta blockers work for different people. I was worried that I may not have POTS because the propranolol isn't working and that I would have to try for forever to find out what is wrong again, but it is good to know that I can't rule POTS out until I have tried more beta blockers.

I am on 20 mg twice a day of propranolol. But none of my other medications should affect my heart I don't think. The only other prescription med I'm on is Omeprazole and then I am on loads of supplements. I just wish the palpitations would go away! They are very obnoxious. But it is interesting to know that a lower dosage may be more beneficial.