Pistol

@Sarah Tee that depends what side effect is more bothersome to you - diarrhea or insomnia? Also - have you considered seeing your GI specialist about the GI issues you are having? There may be meds or dietary measures you could take to lessen the diarrhea.

@MikeO have you ever tried cauliflower crust? You can look a recipe up online and it is sooooo good! You can also buy it in stores.

@MikeO @Sarah Tee Over the years I had to try most of the drugs recommended in the treatment of POTS. As we all know - dysautonomia comes with a high sensitivity to meds in general, so it is always risky business when we try new drugs. I have learned to listen to my body and also to weigh a medications benefits vs side effects - if it keeps me upright and prevents me from passing out, if it increases my quality of life, if it allows me to go about my business like a "normal" person then its a GO! Sarah, I know you have GI issues that make you more prone to unpleasant side effects. Always weigh the pros against the cons with any med - over the years I have learned that consistency is key. Switching/stopping/changing medications - for me - triggers symptoms, so I stay the course and have found my magic combo. I found that my body adjusts with time to meds if I am patient and allow my body time to adjust. Be well!

@akj Huh, I have the same words in my never-ending tossed salad of diagnoses! My first TTT showed NCS ( neuro-cardiac syncope ) and the second was positive for POTS. In the end we have to recognize that ANS dysfunction is difficult to label, Physicians need to go by symptoms rather than data. That - I believe - is the reason many docs wont touch dysautonomia with a ten foot pole.

@MikeO I hope not! Diuretics could be bad for your NOH!

@Sarah Tee I am sorry for you, I know how steroids can make us sooooo irritable! My autonomic specialist always warned me not to take any because they would send my BP through the roof. Two years ago I was very sick and had to take two courses of steroids. Due to the severity of my illness at that time I did not kill anyone with my foul mood but I was sooo restless, could not ever get comfortable or sleep. I hated it! Just hang in there, the last day will be over soon. Then you just have to wait for it to leave your system and then take your Dad out to eat!

I know that kind. In cases such as that I remind myself that I am NOT looking to get married - but simply ask for their professional opinion. There are a great many docs out there that really dont know how to relate - but they may have good ideas.

I recently had problems with my isciatic nerve. I walked into my PCP's office proud as a peacock, telling him that I definitely have a "normal people" problem. He smirked and replied" Well, that would be a first!"

Same here. In the beginning, when I had to face the fact that I am disabled and unable to work I became very depressed. I still sulk in self-pity some days. But throughout the years I learned to deal with these feelings and remind myself of all the things I CAN do, and I am good at. When I see people just standing in line or talking to each other on the street I often think: "Do they even appreciate the ability to stand around like that?" Then I see people that are in a wheel chair or on oxygen or otherwise disabled and I take a good look at myself and say:"They probably think if I appreciate that I can walk around ( even if just for a bit ) and breathe my own air and use the bathroom by myself." To me it has proven extremely therapeutic to embrace my limitations and enjoy what I can do instead of regretting what I have lost.

@Delta that sounds very concerning and I would not ignore it. I have problems with loosing circulation from sudden vasoconstriction, but that shows usually in pale or blue fingers and toes, chest pain or brain fog. If I lift my arms above my head my arms become weak and heavy. Never have I experienced loss of function or numbness like you describe. It is possible that it could have something to do with your neck or other problems but since this is a new symptom - and there was really no cause for it - I would encourage you to discuss it with your doctor. Not all symptoms are dysautonomia related - so it is easy to just brush things off.

Yes, very true. Being very stubborn, in the beginning of this illness I told myself that I should not let it get me down and "barreled" through it. Avoiding to effectively deal with my symptoms, ignoring my limitations and pushing myself inevitably worsened my condition. The best advice I have now is to learn to listen to our body - that is the only way I can manage living a good life despite POTS.

@MikeO two thumbs up! Enjoy! I sometimes make a burger by using veggie burgers a "buns" and put cheese, lettuce, tomato and onions in the middle.

Hello @Krys, wow, you really have been through the wringer! I remember how relieved I was when I got my official diagnosis - it was almost like FINALLY its real! You mention your cardiologist ( btw I am so glad you have a doc you can trust! ) has you on metoprolol as needed, but you also mention your tachycardia is very bad. I am not questioning his orders but want to point out that generally in dysautonomia beta blockers are more effective when taken regularly, on a daily or twice daily basis. POTS is an imbalance of the ANS, so taking medications the same time every day can help the body regulate. Having said that - many people take an additional dose as needed when symptoms flare.

@VerdantPikmin my family has a history of HPOTS in three generations, and many of them have tinnitus as well as intermittent hearing loss when the BP drops and the HR increases. We were told by autonomic specialists as well as ENTs that this is most likely due to a loss of cerebral circulation.

@rondo I was on midodrine for NCS at the beginning of my dysautonomia journey, and I can tell you that the effects last only for a few hours because of its short half life. Personally it was not the right med for me simply because of the type of dysautonomia I have, but I would like to encourage you to talk to your doctor about the good and bad effects when you take it, so they can advise you on any dosage or schedule changes that might be helpful. If it improves your symptoms that is wonderful news!

@MikeO referrals take time, unfortunately. I would call the nurse that takes care of referrals at your PCP's office and check if she is already working on it. In this process it is all about communication, so I hope your cardiologist that mentioned the referral has also let your PCP know!

@mehaller I am so sorry you have to endure all of this! Hang in there! -- As to your question about pain and dysautonomia symptoms - I have learned that anything that stresses our bodies can trigger symptoms - and pain is a big stressor. The ANS responds to everything that is going on, inside and outside of our bodies.

@MikeO I use claritin in the morning when allergies show up. I too have worse dysautonomia symptoms with allergies, I think that is because histamine is a vasodilator.

@Neomorph I have not noticed any interactions with caffeine. A lot of people on this forum do not tolerate caffeine, so if it causes you issues decaf may be worth a try.

From all of the beta blockers I tried Carvelidol is the one I tolerate the most. Other beta blockers caused slow HR or other unwanted side effects, such as sleepiness, or they did not affect me at all. Of course we are all different, and we respond differently to medications. You mention that you take a beta blocker as needed - I have found that this is not the best solution for POTS patients. Dysautonomia is an IMBALANCE of the ANS, so in my experience taking medications on a regular schedule is more effective, as well as following a daily rest-and-activity routine.

@Neomorph Unfortunately this was one of the biggest steps I had to take to improve my quality of life - after - POTS - diagnosis.I am glad you realized that taking this drastic step was necessary - I pushed through work for years and therefore made things a lot worse. When looking for a new job I would like to suggest that even a desk job can be stressful, and it may be a good idea to consider being able to get up and move frequently - sitting for long periods of time triggers symptoms for me just like standing or walking does. What med do you take right now? Most doctors start out by prescribing beta blockers. Each person is different and we all respond differently to meds but I have tried several beta blockers and found the greatest relief of PVC's and tachycardia from Carvelidol, which has both beta-and-alpha blocking properties.

OMG @MikeO - WATCH OUT! That is way too high. I am worried about you!

@PCT_SAV It depends. I was wheelchairbound at some time, but that was when I was not medically controlled, and I kept passing out and having autonomic seizures. If you have syncope when upright AND you have been refractory to all other measures ( salt and water intake, compression hose, targeted exercise, medications, IV fluids ) then you may have to look at a wheel chair or walker as an option. However - if you have just recently been diagnosed you probably have a lot more medications and treatments to check out before you go to such drastic measures. Remember - exercise is absolutely beneficial for us, we just have to do it within our limits. Also - you may want to increase your upright walking time gradually, instead of stopping it all togehter.

IMO good news. Means they realize they are at the end of their abilities. I would go for it.

🙏 Wish you the very best and applaud you for trying!!!!!!! If you check under the physicians tab you can get physician brochures- it may be helpful to give one to every doctor you go to.