Kaitlyn

Hi Pinky So happy you found the forum ? You probably know this but I was just thinking about the Mestinon...it can cause gut issues and a much quicker pass through. I have chronic constipation but taking Mestinon it's more like IBS. The other thing I was thinking that may or may not be relevant is that I have postprandial hypotension. So when I eat my BP drops really low and especially if I eat too much I will fall asleep or basically pass out. It is really hard to wake myself up. It was scary especially at first before I realized what was happening. And even now it still is a bit to think my BP is that low. Not sure if this helps at all ... wishing you the best! Welcome!! kaitlyn

Thanks for your responses and information. You've helped normalize the un-normal ? Still waiting for insurance approval. I will look for older threads as well if I need additional info. Hope everyone is having a good day!

Yes I agree it's a balancing act and each person has to make their own informed choices with their providers. Issie you mentioned raising normally low BP and wouldn't that be high BP for that person then. No not necessarily. Last winter I got a cold and my BP tanked to the point that my MAPs were in what could be considered danger zone. BPs of for example 67/39 and resistant to everything including 30 mg of midodrine per day, fluids, Mestinon etc. what eventually helped was 1. Time and 2. Homemade salt capsules. I guess my point is there is a time and a place and it is a personal choice. We all have to walk a line. i sure appreciate your research and the point you are trying to make. For me right now it comes down to cost vs benefit. My cardiologist also seems to have much more immediate concern about my current BP than my arteries. Best wishes ?

My neuro just prescribed Ritalin and I am wondering if anyone else is or has taken it for fatigue and brain fog and what your experience was with it. I don't mean to whine ... just tired of meds and yet I want to feel better and be more functional. She started with a very lose dose (5mg /day for the first month and told me to watch symptoms and effects very closely. I am very sensitive to meds. I don't even do any caffeine. I know that's different yet still a stimulant. Also, I know Ritilan is an ADHD med and it is being used off label in this case. Who cares right? For some reason I do. Maybe I am just feeling weary at the moment. Tomorrow is a new day ...

I think 1 teaspoon is equal to 1 gram

My neuro wants me taking in 6-8 grams of salt per day. I make homemade salt capsules to assist with this. I am lucky that I love salt on my food so I don't mind adding extra.

Check out Mestrength on Amazon if you want a powder to add to water. It's a rehydration drink - it has potassium in it. Pretty tasty also!

That's great about the Adderall - so happy it's helping you ? I totally understand what your saying about the foggy and forgetting things. With your description of the Adderall I am feeling a bit more open to it. I tend to be so anti- med but that's a tough place to be when you need them. Salt capsules: I but empty capsules size 1 by herb affair on Amazon. $17 for 1000. Then fill them with salt (my cardio has me alternate between sea salt and iodized so I don't overload on potassium). The capsules just snap into place after you fill them. The size holds a little more than a gram. It has been working great for me. I take anywhere from 1-3 depending on how I'm feeling and still salt liberally with food. I love salt so that's ok with me. My neuro recommended 6-8 grams per day. I am sure it's different for everyone. I also found another product on Amazon called Mestrength. $17 for ten pouches of powder you add to a bottle of water for rehydration. Has electrolytes, potassium, sodium etc but no sugar. Comes in different flavors and is pretty good. Yes with already low BP if you have diarrhea for even 24 hrs it can have a pretty big impact - again what my neuro said. She told me to go in for IV fluids if this happens to me. I know it can be hard to get enough salt and fluids. Maybe the capsules would help you? ?

Right! I can at times have my numbers be ok but I don't feel ok. It's frustrating. But then add in whatever else is going on. For me it could be vestibular migraine issues or chronic fatigue for example. And the numbers don't always match. Add in user error and you have a real mess. I had a med tech take my BP a couple weeks ago: 128/75! What? I'm very lucky to ever get over 100 systolic and often at or a little below 90/60 on a good day. The cuff was too small or tight or something. It took the reading too fast. And she was talking to me and having me answer questions. Again ... Frustrating. Where did you learn to take an accurate BP? in the end we know our bodies. It will be what it will be. ?

My neuro (mayo trained) explained it to me this way regarding family connections. Dysautonomia is the umbrella under which many different dysregulations fall under for example POTS, OH, Gastroparesis and even things like rheumatoid arthritis, endometriosis and Graves' disease. I am paraphrasing. But this was the general idea as I understood her. It helped me make lots of connections throughout my family.

Welcome new members. I hope you find the comfort and support you are seeking. I know I have ?

Kiminorlando - I haven't had any recent surgeries but even for colonoscopy they have MACK anesthesia in the room and do lots of extra fluids to avoid the low BP issues. My neuro now has a therapy plan on file with the local hospital so if I get in trouble with my BP I can go in for IV fluids. I wonder if something like this would help? They pretty much have told me to avoid ER as unfortunately most ERs don't know what to do with 'us'. kaitlyn

WMH- with the diarrhea you can lose volume quickly leading to lower BP and lightheadedness, presyncope and syncope. When my gut really acts up my neuro gives me a script for VSL probiotics. It seems to help with the diarrhea and pain from IBS. MOST OF THE TIME oops - I tend toward constipation but you know how it is with Dysautonomia. If the symptoms aren't changing something is wrong lol thats interesting - my neuro wants to try me on a stimulant next for cognitive impairment, fatigue and brain fog. Adderal was one she mentioned. I hope that works well for you! I have had some very narrow readings also. Not consistently though. If they stayed there consistently I would call my cardio and let them know. my BP always drops after eating. Postprandial hypotension - the blood goes to the gut to work on digestion. sounds like we have a lot of overlap. Minus the Sjogrens - sorry to hear you've had that added as well. Let me know how things turn out with the adderal. Is it making you jittery at all? What was your starting dose? kaitlyn

Hi Wildmtnhoney - how are you doing now? I was on Midodrine but as low as my BP usually runs 86/56 at the dr today for example - Midodrine wasn't really that effective. It gave me a small bump but my new EP/Cardio doesn't like the drug and preferred I didn't take it since it wasn't helping all that much. It didn't hurt me either and seemed to leave my system quickly. At one point when I had a cold and my BP was super tanked (danger zone) they had me taking 30 mg a day. This is definitely something to discuss further with with your cardiologist if you have concerns. I tried Florinef and had an allergic reaction to it. Seems so many of us with Dysautonomia are sensitive to meds. So that was out and I can't really speak about it. Oh and I have IST also and take Nadolol for that and POTS. Still have the symptoms but HR is much better controlled. what I am doing now for BP is homemade salt capsules, some compression, electrolyte drinks and trying to avoid triggers. It isn't perfect but my BP is pretty resistant to everything they have tried anyway. Hope things are going well with you! Kaitlyn

Hi Lynda - I am sorry to hear about what's going on with your daughter. I will tell you a bit about my experience in the hope that can possibly shed some light for you. It is my understanding that POTS is just one piece of Dysautonomia (which I have). I also have chronic fatigue, gut issues, low BP (orthostatic hypotension, neuro cardiogenic syncope and severe vasodepression), tachycardia (fast heart rate which is the POTS), inability to regulate temperature, presyncope and syncope, dizziness and balance issues, cognitive impairment due to fatigue and brain fog, and various joint pain here and there and I may be forgetting some things. There are a lot of symptoms that fall under the umbrella of Dysautonomia. I have also heard of people having additional autoimmune disorders as well. For example Sjogrens which has symptoms of dry eyes and dry mouth etc. Not saying your daughter has this. Just saying it is not always cut and dried as we would like it to be, unfortunately. I hope you and your daughter find answers and the treatment she needs to maintain her symptoms and improve both her comfort and quality of life. Sending strength...wishing you both the best! Kaitlyn

Awesome - thanks for posting! I love her comment '... the ridiculous concept that the disease is psychological in origin'! Thanks to her!!

Yep I would say ditto to most of that and add double vision. You know that big E at the top of the eye chart? When they shine the light in my eyes I see two of them. And not much else. Very light sensitive and relate to most of the above symptoms particularly dizzy/balance issues for me. I have vestibular migraines. You are not alone kaitlyn

Dizzygirls- I know I have said it before but y'all need a break! Understatement! Sorry you're going through this. I can hear the exhaustion coming through in your posts. Adrenal fatigue/crash ... one natural thing I know of to help with adrenal health is Ashwaganda. My cortisol is always on the way low end. Quite a few years back before I was diagnosed I saw a chiro and he felt I had adrenal fatigue. Amazing how spot on he was - though just a piece of the puzzle. Anyway, he made up a liquid for me to drink. I don't remember what was all in it but I know Ashwaganda for sure. If you google there is a lot of info out there for natural supplements to support adrenals. I hope she and you get some relief soon! Sending strength and big hugs Kaitlyn

it makes sense that upright would show the extent of the herniation better. Terrible to have to worry about insurance issues besides. Good Luck to you all, I hope you get some relief soon - I will keep you in my thoughts! kaitlyn

For me it is mainly pre syncopal. And just in general cognitive impairment due to Dysautonomia, fatigue and vestibular migraines. Is there something specific you are concerned about? I would think it's fairly common with a lack of blood flow. Not sure what else might cause it?

Scotty81 - first off sorry your daughter is dealing with all of this. Second I am not a physician so everything I am about to say is based purely on my personal experience. my normal BP all of my life has also been 90/60. Resting for me while taking Midodrine was no problem. (By the way I had the same reaction to Florinef that your daughter had and other side effects as well). My BP never went crazy high on Midodrine. The other thing about Midodrine is that it is what's called a 'forgiving' drug (unlike Florinef that hangs around in your system for awhile). In other words you take it and it does its thing and it's gone. It takes about 45 minutes to work, peaks for about 2.5 hours and then starts to fade. So if she took it at say 8am, she could certainly rest (I would think) from 1100 - 100 and take it again at 1 and then 430 or 500 for example. I was told not to take it after 600. My understanding is that the biggest concern is supine hypertension during sleep ... I took this to mean during the night. If she is having symptoms of hypertension at nap or night I would definitely speak to the dr about switching to a two dose schedule. Sleep is most important!! Especially if she is not having low BP symptoms during sleep where she needs that bump in BP. for me the Midodrine barely bumped my BP and hypertension was not going to be an issue - that's why I am not on it anymore. It wasn't effective enough. I make homemade salt capsules and drink tons of electrolyte drinks, use compression, avoid heat, etc etc etc ... My BP has been very resistant. I wish you and your daughter all the best ? Kaitlyn

Sorry to hear that. I can relate - I often feel that way. For example I take beta blockers for tachycardia but the lower my already low blood pressure which then requires several treatment modalities. I have read that the prognosis for print metal angina is good but as to how that relates to beta blockers I don't know. i can hear your frustration and I feel for you. Hope you can get some answers soon! hang in there! kaitlyn

Thewayiam- good for you! So glad you got your testing done. Others may not understand the relief of a 'positive' test but I cried after my first 2 TTT - I think it was relief that I would have a diagnosis and someone was seeing objective evidence of what I felt, and also then I knew what I was dealing with! it will be some trial and error now (based on my experience) but with these test results you will be able to start getting some treatment to help with symptoms! Regarding your PCP that's a great idea to bring her some literature. It's very possible she simply doesn't understand yet. After that, If she still doesn't get on board you might consider finding a new one. I know for me I have had all I am willing to take of Drs that don't believe me, support me and work with me. You have a right to be heard and not dismissed! Good luck Kaitlyn

Okami - so sorry to hear about your situation. Chronic illness is hard enough without so much financial burden A couple of ideas: how about calling your local Department of Human Services to see if there are any programs available? Even if you can't get welfare per say there may be other forms of relief through other non-profits that they know about. You have to ask a lot of questions, don't be intimidated or let them rush you off the phone. Also, how about churches or food pantries? Churches will often do something to help in small ways. Food pantries are usually open one or two days per week. I hope things get better soon! Good luck Kaitlyn

Katybug I am glad you brought up Chiari because as soon as I read about the tethered spinal cord I was going to bring it up as something to be ruled out. with that said, Chiros can be great but until Chiari is ruled out I would be very very cautious about any neck adjustments or alignments. I have a small Chiari (herniation of the cerebellum tonsils into the foramen magnum) so have done quite a bit of research on this. Chiro adjustments are contraindicated for Chiari as they can increase the herniation. Manual neck traction in my case is fine and can help with cervical dizziness however. It has helped me. Good luck! Y'all sure need to catch a break! sending hugs ? Kaitlyn