StayAtHomeMom

My boss has it and even he suggested it but it is only on those 2 knuckles and no where else on my body.

I can't relate to your conditions a whole lot but I have a medication idea. You were talking about the sweating. When a woman is menopausal the herbal supplement black cohosh is supposed to help. Do you think that may be something to try? I am not making an assumption you are menopausal but I am just thinking out loud that it may help the hot flashing (that I assume is causing the sweating).

I know lots of things can cause rashes. I am mostly curious if anyone else gets a weird rash on their knuckles. I have had it for about a year. My dermatologist tried to tell me it was eczema but my eczema shows up different (kind of like ring worm. Smooth in the center with itchy raised outer edge). The rash I am talking about is on my dominant hand. Only the index knuckle and pinky knuckle. It is dry, flaky looking, thick skinned, and itches like crazy only when it is flaring. Also when it is flaring I get little red bumps in it. It seems to always be there no matter how much lotion or cream I use. Curious if anyone else has it or something similar.

Keeping your body cool can help. Cooling vests I heard are great. I use water drip it on my skin with some sort of fan to keep me cool. Any word on how long your heatwave will last? I live in the US and ours finally eased a bit. It is finally getting cool at night.

I take it when I have things to do. I work most days (at least a few hours in an office) and take care of my husband and 2 teenagers (who are homeschooled) so I take it almost everyday. I usually only take it once or twice a day though. If you lay down with it, it can cause your blood pressure to skyrocket. I was scared to try it at first but it really has helped so much. Currently it is the only med working. My metoperlol is barely working if at all so I rely heavily on my midodrine. Start by cutting your pill in half or smaller and my doctor said the wonderful thing is I don't have to take it. I can adjust to how I need to take it. Just make sure I take my last dose more than 5 hours before I go to bed or lay down for the night. A few weeks ago I was able to go to the Ark Encounter in Kentucky with my husband's family. (Very religious family) and I walked the museum. I had a blast. Even took 1300 pictures 😊 no way would have I been able to do that without my midodrine. I did take it easy and my husband's family was patient ( both my sister in laws have invisible diseases too). But I got to do something out of the ordinary.

I hope things get better for you. I have had very few attacks in the last few months and I am unbelievably grateful. I know it won't last forever but it is nice right now. I know things are bad now but you will get better. Just try to keep calm and positive. Sending good vibes your way.

I remember reading something about a hormonal disease that can cause uneven pupil response. I can't remember exactly. It was when I was seeing an endo to see if I had hyperPOTS (he refused the test I wanted but tested my hormone levels instead). If I remember right it my research had to do with sargent's white line too. Sorry it is kind of vague. I don't remember exactly, I am tired this morning and I haven't had my mountain dew jolt. I have had a few ocular migraines and I get this gray spot that covers part of my vision in one eye. Freaked me out the first time it happened. I only get them about once every 3 years or so though. I suspect this is something unrelated to your POTS/EDS. BTW how did your get your EDS diagnosis. What kind of doc?

Maybe get with your local hospital and ask the staff. Maybe they would have the best idea.

I get tinnitus but general doesn't last for more than 10 minutes at a time. It is usually when my symptoms are most active. I head feels full of pressure when it usually happens so I imagine it is due to BP changes.

I would see if during one of these episodes your pupils are dilated differently. It may be that the one eye's dilating response is not correct. If it is different see if you can snap a picture or take video so you can show the doc. I would suggest an ophthalmologist it may be ocular migraines too (does not always have a headache). If it is the dilating response have them check your hormone levels. Make sure your cortisol (and the other hormones that go with it) is normal.

Try to keep track of what you eat and when. Maybe it is just the reaction to eating too close to bed. I know if I eat a heavy meal or too much food I get exhausted. Like my heart rate is too high.

I have odd reactions to most medications. If there is an odd side effect I get it. I can't take prilosec because I feel like I am gonna have a heart attack. (Spent 3 days like this before I figured out it was that med). But then sometimes meds work just fine. I take midodrine. Up to 5mg 3X a day. I get the tingling sensation. Mostly is my scalp but I can get it other places like one cheek or my shins. I mostly just deal with it because it helps so much. I am the odd man out in my family as well. My husband doesn't wrap his mind around and sometimes says things that make me mad. Today we went Pokémon go hunting. And accidently got sucked into raid hopping for a legendary. He kept wanting to go back and get the van because I was walking so slow and he wanted to keep up with the large crowd. I took offense. I am stubborn and do what I want to even if I am a little slower at it. I have plans to start the keto diet soon. I need to find a few supplements first so I can avoid the keto flu. My weight has gone up over 30lbs in the last year. My mother in law swears by it. She has lost 90 in 9 months. My thing is by cutting the bread out it may make my stomach feel better. And added bonus of disappearing the weight with no exercise required. You father sounds like my husband's family. I just let most of it go in one ear and out the other. As long as they don't force my children into their way of thinking they are entitled to theirs. Things will get better. I am actually considering a set of double crutches that can be folded down into a backpack for my bad days. There has been a few days in the past month where I really wanted them so I am thinking I may have to buy it soon. Even if I never use them at least I have them. Stay strong and positive. Find your triggers. And then avoid them like the plague. Everyone's seems to be slightly different. But if you can find them and avoid them it gets loads better. I have issues with heat, sun, multitasking (like walking and talking), loud noises and crowd noises, and physical exertion while standing (like sweeping, but not vacuuming).

I think that is a great explanation. And a rational idea to what is happening too.

Take it easy and actually rest. Keep calm. Do things in small doses. Lots of water and try to be active without being active. Like instead of laying in bed all day try getting to the couch and lay there. Depending on his symptoms I think would depend on what kind of things to try though. Good luck and I hope he feels better soon.

What is the golden rule? Something like it takes at least 10 minutes to find something in a woman's purse? 😂 I like the idea better with the compartment so you can change the info in it. And the clear tape to waterproof it is genius.

That is interesting. Have you heard of the hearing aid that uses bone conduction that makes it seem like you are hearing from the damaged side?

I didn't pass out (never have) and it was exhausting. Like running as fast and you can for 45 minutes. I think I am one of the lucky few mild cases. I never felt that way til I met my replacement cardiologist back in May and she said how impressed I was with how well I function. Partly it is the meds but seeing some people's stories makes me think mine isn't so bad. But I think I have had it most of my life and maybe that is why it is mild.

I am not sure where you are from but you can get a cheap sugar checker from Walmart here. Just check your sugar in the morning (no eating or drinking for at least 8 hours) and the 2 hours after you eat and right before bed. You could add maybe times when you feel really bad if you like. Monitor for 2 or 3 days. Your blood sugar should be under 100 fasting and around 120 2 hours after you eat. Anything off I would bring your data to your doc. If you have a copy of your medical records you can also check and see if it was checked. Depending on when they did the blood draw your number may vary.

Have you been checked for diabetes? My buddy was averaging over 400 for high blood sugar for months and didn't know it. He was thirsty, peeing slot, dizzy/lightheaded, and irritable (out of character for him) and he was severely tired. Used a sugar checker my mom had (she is diabetic as well) and it was over 300. So I made him go to the doc and his A1C was 15.9. After he got his sugar under control he felt loads better. He said it kinda crept in on him and he didn't realize how bad he felt til it had come down. I have a different buddy who has low blood sugar issues and when his is too low he sounds similar to what I have. Dizzy/lightheaded, tired and just generally crappy, can barely move. His last ER trip he got yelled at constantly because he drove himself to the ER because of how he felt and it turns out his sugar was 40. My point is sometimes blood sugar issues can be overlooked. They are supposed to test your blood sugar when you have a variety of blood tests done but sometimes some people miss it.

I think to test your theory I would go on vacation. Make sure you spend half the time going out and about and then see if you crash when you get back to your hotel. I notice similar things but the amount of energy expended usually matters. It is kind of like, "OK I am home, I can relax" and you take a deep breath and your body just crashes.

Everyone's body is different. That "magic" HR number is different for everyone that may cause symptoms. That being said you are right. All my research says the same thing: OR. Make sure you have a knowledgeable doctor interpret your results. An electrophysiologist, cardiologist, or neurologist that at least has some idea what they are looking at. My POTS specialist is a neurologist and made me redo all of my previous testing to rule things out because "they never do these tests right" lol! My doctor that diagnosed me had no other POTS patients but I brought my data from my Poor Man's Tilt Table that I took everyday for a month. He put me on a TTT and did his research. He was a wonderful cardiologist and one the few doctors that took me serious. I will definitely miss him. Good luck Monday and if you can, try to get a driver for your TTT. It can be exhausting standing there for 45 minutes.

I know sometimes HR increases trying to compensate for low blood pressure. But your blood pressure doesn't seem really low. Except maybe the bottom number. My doc told me five hours for the midodrine but either way that doesn't make work because you said it was from before. Do you have delayed gastric emptying? My sister in law has gasteriparesis and her blood sugar is backwards. Low during the day and high at night. Maybe if your stomach is backwards your body is freaking out trying to digest food? What do you usually eat for dinner those nights? Things heavy or bready?

Do you get up a lot at night to pee? What about being thirsty?

The only question I have is when is the last dose you take of your midodrine? You don't mention what your blood pressure is during these episodes. Do you have an idea of that too? And you have HyperPOTS, right?

Any meds that would cause an adrenaline surge could be dangerous. Or I imagine if you take meds that up your blood pressure and they try to lower it. Being unconscious and if they have no medical record of you in their system they treat you "normal" and I don't think anyone on here would have a normal reaction to most things they would do if you were unconscious.