KareBear

Welcome to the forum, Trappedat20!

It sounds like you are just beginning this journey with dysautonomia and seeing a POTS specialist will help provide more answers. You symptoms sound very much like mine except my bp never goes high. There are lots of people on this forum that do get higher bp's though. Have your docs tried any meds yet? There are many meds and other things that can help stabilize some symptoms.

One thought is that some of your bp readings could be off a little if you take back to back bp measurements. A couple back to back is ok but if they are too close together and you take several you may want to switch arms to get more accurate readings. Sometimes the blood flow in the arm hasn't recovered before taking the next reading if they are too close. Just a thought!

Of course the basic things like increased fluids (lots of gatorade really helps me, I drink about 60+ ounces a day), and increased salt intake can help POTS. Have you tried these yet? You were so lucky that your mother recognized the symptoms and got you on the right track so soon. Hopefully your doc can help you get your symptoms under control more. And soon! For me, my symptoms eventually "settled down" and my symptoms became more leveled out and consistent over time and with the help of meds and that seems to happen to many others so Dont give up hope! Things can get better Hang in there!!

I have the same thoughts about using hormones! I always thought, "why would I do that unless absolutely necessary?" I'm actually glad I never used them. I even had years of painful ovarian cysts that docs said being on BCP's would possibly help but I chose to let my body take care of them naturally. They eventually stopped. I can see why some people need to get on hormones but If I had to I would only use them for a short period and then see if things were better. Sure seems like they could affect lots of things. Maybe with the seasonale you could stop for 7 days at the end of each month first to give your body normal monthly cycles first and then over time stop them completely? This is what a friends doc suggested once for her so maybe you could ask your doc about it.

Maybe you can send them a PM on their profile and get a hold of them.

My doctor had told me that my cardiomyopathy comes from the constant tachycardia that has been untreated for my whole life. The tachycardia is from POTS so that to me is related. He said that the constant over working of your heart for so long can wear it out causing the cardiomyopathy.

I have never been on birth control pills/hormones. Ever.

This reminds me of when I got officially diagnosed with POTS. My first visit with my EP Cardio was very detailed and asked many symptom questions. He kept asking me if I felt sleepy or tired......over and over. I dont understand the difference between the two! Honestly. Maybe he forgets being deaf leaves many holes when it comes to describing things but still to this day I dont understand the difference. Maybe it's like that with dizziness and brain fog for you? Just a thought.

I also always considered "brain fog" the inability for me to think straight or my forgetfulness, cant find the right words, forget what I am doing or going, etc. that is totally unlike me because my brain is normally overactive and always had a photographic memory. For me, I feel dizziness is when I feel the room spin, I feel off balance, feel like I am moving when I'm not.....those type of things. Of course dizziness caused by lack of blood and/or oxygen to the brain can make me have both at the same time and maybe this is what you are having so it can be confusing.

I have only noticed itchiness when I am standing and the blood pools in my legs, sometimes it makes my lower legs or ankles itchy but it resolves when I lay down. Also sometimes feels like a bug crawling on my leg when there is nothing. I always assumed it was the blood flowing down my legs or maybe my veins but dont really know.

When you are standing and see your leg veins looking like that and/or also your legs may turn red or purple for some. That usually is from blood pooling. Yep! Especially if you never noticed this before having POTS symptoms. Before my symptoms got bad My legs never used to change colors but now when I stand my lower legs turn red, feel heavy, and many times start to swell around the feet and ankles. Also the veins appear very prominent like you mentioned.

Have you tried the abdominal binder yet? I still plan on trying one soon as well. I know having O2 at home has helped me a lot but doesn't seem to be used by many others on here. My insurance never even questioned it when my doc prescribed it years ago so there was no problem getting it. Anything non-pharmaceutical that helps is always worth a shot

Aww thanks guys and gals . You made my night!

I saw Dr. Fealy at Mayo MN in 2008. I had already been diagnosed locally with POTS, OH, etc but my parents wanted another opinion and I had already tried the typical POTS meds with no improvement of symptoms so they hoped Mayo could help more. I have to say the clinic is extremely efficient, employees and staff are wonderful, everyone is super helpful there. I was truly impressed. The testing and appointments were on time and I got immediate info and results for the most part. It is an exhausting few days and took everything I could to even be wheeled in a wheelchair to my appointments. They pack a lot into a few short days.

Things initially did not go so well when I met Dr. Fealy, but after the initial improper first impression he had of me was cleared up things went better and he was knowledgeable and pleasant. (I can give more details in a PM). Unfortunately other than offering Mestinon which I had not tried yet, they had no other treatments to offer me. He diagnosed me with "severe adrenergic dysfunction" and was in agreement with my current diagnosis'. They were great for getting a concrete diagnosis but I didn't come home with anything other than that, and I already had been diagnosed so for me it only gave me more piece of mind and my family too I guess.

There was no further treatment plan set up and no looking into what may have caused this. I was still just as disabled after my visit there so if anyone is looking for a cure you probably wont find that but will get a thorough testing and proper diagnosis along with initial treatments if you haven't begun those. At least this was my experience. It was a good experience overall.

I'm so sorry to hear about your day today! Gentle ((((hugs)))) coming your way. I can relate to days like you're having and it's pure misery. Maybe when the hubby comes home you can ignore the housework, order pizza, and have him give you a relaxing massage Housework will always be there tomorrow or even next week, if it's not urgent it I skip it when it's a rough day. If anyone has a problem with my messy room or house then they are welcome to clean it Hang in there! I hope tomorrow is much better.

I do understand your frustration and honestly dont know how to get them to recognize dysautonomias or POTS as disabling conditions. Like Katybug said, you have to play the game to get disability pay. We know why we are disabled. I also had to see a psychologist appointed by SS before my hearing and thought it was total ** too. I went because I had too and because it seemed standard for others going thru the process even though I knew I wasn't depressed. I was awarded SSDI and never really told what diagnosis was accepted, I assumed they accepted the POTS diagnosis but later found out they listed me as having depression and a heart condition. I dont know where they got depression from because I dont take any meds for that and never was diagnosed as depressed but that's what they have listed. I dont like that listed but cant change it and feel as long as I get the end result I needed which is disability pay and medicare then I can live with it.

I think my lawyer really saw how disabled I was and so did the judge, especially when I had to lay on the floor at my hearing lol. I think they did what they had to do to help me get the benefits.

I know how upsetting this is, I remember how frustrating going thru the process was. I am wondering though if they are trying to get your SSDI case passed based on anxiety to help you because POTS isn't a recognized illness by SS. In every case they focus on a symptom the POTS gives us. Some people have had their case pass with a diagnosis of depression, anxiety, etc even though it is not what debilitates us but is a result of POTS and are diagnosis' recognized by SS as disabilities. Does this make sense?

In other words, the lady on the phone and the SS doc may very well know you are disabled by POTS but are trying to get your case passed using a recognized disability since POTS is not one. Since you are on Klonopin it may be easier for them to "prove" your case and get you on SSDI. It would be worth talking to her about. She may really have been trying to help push the paperwork thru and this was the easiest route. Just a thought. I hope it gets straightened out for you!

I am not sensitive to meds like many others on here are. Only beta blockers seemed to give me trouble until I found the right one. I have been on Norco (hydrocodone 10/325mg) for a few years and that has helped tremendously. And no, I don't seem to have any addiction issues. I only take as prescribed and as needed. I have taken breaks from it with no withdrawal affects too. Now with cancer, I am on Morphine as well as the Norco. Morphine 3xday and Norco for breakthrough pain. I know that would be a bit overkill for others on here obviously but I have zero joint, muscle, and bone pain now. Thankfully! I'm at the point that I know I am in this for the long haul so if this is what is needed to not suffer then I am good with it. Plus having good docs to monitor you helps.

You can dot it! Just keep reminding yourself that this med may be one that will help a lot!

Finding a doc that listens and is willing to try and figure this out is the link we all need to proper treatment and feeling better, so yay you!! I hope this doc continues to work at it and help you. It's wonderful news and sure is a relief when you find a doc like this Here's to finally getting answers and some help!

Is there anything he suggests to help your Raynauds?

It takes a while to adjust to new meds, especially betas. You may need to give it at least a few weeks before your body adjusts to it. It took me a while to adjust to mine and I had many increased symptoms after starting it including dizziness! Once my body adjusted I no longer had side affects at all. So do hang in there and give it some time. It may be hard and frustrating at first and feel like a set back but that's how these meds can feel at first. If you adjust to the meds and turn that corner where the side affects aren't like this then it will be all worth it

Looneymom, I have had chronic pain since I was a young child, around age 7 as far as I can remember. It got increasingly worse and to this day the bone and joint pain is terrible, so bad to make me want to go to the ER at times! I also get muscle spasms. I have had the same bloodwork run a hundred times. Sometimes inflammation shows, sometimes not. But the pain is always there. Most the time the labs were normal. Now that I take daily pain meds, I rarely have that excruciating pain, yay. It helps a lot for me. The docs never really have understood the cause but agree with treating it. Wish I knew more because this has plagued me for so long. I hope so badly you can finally get the answers needed for Tyler, I will be thinking of you and your family.

I'm not exactly sure when my symptoms started but they started as a child and I did have the chickenpox badly as well along with severe strep throat at the same time! It was horrible. So, it is a possibility that they could have some connection though I cant be sure. Interesting! Does make me wonder!

I think any parent with this illness or any chronic illness deals with those feelings of guilt. We put more pressure on ourselves than others do though so I think it's important to remember that what your kids will remember most is you being there for them when they need you and you can do that even more now! You can take the time now to communicate daily with them and see how they are doing. Give advice. Just chat and spend time together. You can now give them your full attention without being distracted. That will mean everything to them. The times you share together now will be more cherished and meaningful. Emotional support and love is what is most important and that you can still give!

When they have events you cannot attend, maybe have them come home and tell you all about it and still share those moments. Tell them how excited you are for them or how proud of them you are. I honestly think it will be just as special. We put so much more pressure on ourselves, and children are understanding and adapt. You didn't ask for this, so dont be too hard on yourself

If you are having increased heart palpatations you may need a cardiac doc to check into that. Have you had a holter monitor recently? Especially since you are experiencing more tachycardia too, it would be a good idea to get it checked out. As far as the eye twitching, the most common causes of that are:

Alcohol intake

Bright lights

Caffeine intake

Fatigue

Irritation of the eye surface or inner eyelids

Lack of sleep

Smoking

Stress

Wind

I'm sorry you are having all this happening, that's the last thing you need around the holiday's right? I hope you do talk to your doc and find out the causes of the increased cardiac symptoms. I dont know much about kerosene usage since I live in a warm climate and dont use those heaters but maybe some other northerners will know more. Feel better soon!

Do you think it's possible that the initial decrease in fatigue was the Lexapro (which caused more fatigue) leaving your system? Having only been on the Prozac a week I would think you may need more time to adjust possibly. Every time I took similar meds my doc always said it takes 2 weeks before you may notice a difference or before you can tell if it helps. If you are tolerating the med ok then maybe giving it a little more time is worth a try.

Chaos, that would make a lot of sense. The meds do work well controlling my vitals but whatever underlying problem I have is still there of course so the meds more than likely mask things. Good point! Thank you!

I dont remember the exact amount of time it took to adjust to propranolol but I do remember my doc feeling confident it would help me and he told me to not give up on it, take every dose on time, and give it at least 2-3 months. It made my symptoms as far as low bp, dizziness, and near syncope much worse at first and I could barely get up for anything. But, I did adjust to it I believe around 6-8 weeks after starting and it has been the best med for me. I'm glad I stuck with it. It of course doesn't help all symptoms but helps the cardiac stuff. No more bp drops, controls heart rates, no more chest pains, helps with the chronic headaches, even the shakiness and nervousness associated with tachycardia are relieved by it. I take 40mg 3xday. I have been on it for a couple years now and it still works just as well for me. I hope you and your doc find one that works for you too!