taylortotmom

Hi, everyone. My cardiologist suggested (actually he highly recommended) I start taking Co Q 10. Have any of you had experience with this- he was quite enthusiastic about it. I trust him and I have done some research myself- do any of you have firsthand experience? What specifically has it helped or not helped? Hope everyone is doing as well as you can- I have been very blessed with a mild remission over the past few months and received an excellent cardio visit/report on Friday- yay! Carmen

My poor father bless his heart- makes it a point to buy everything with "no salt added" because I'm a heart patient. I've tried explaining to him that in my case I NEED the salt. He just doesn't get it it- but at least he tries. Whenever we go to visit at the holidays- my mom just rolls her eyes (at my father- she understands) at the "low sodium" chicken noodle soup and " sodium free" saltines- lol he buys to have on hand for me- lol. We have shown him material on dysautonomia, we have talked to him, and he is an intelligent man but for the life of him just does not "get it". Carmen

Sending fervent prayers your way, Melissa!!! Carmen

Just to clarify about the parent and child benefits: They do not give you more money they split the amount you are entitled to among parent and children. For example, if you qualify for $900/month and have two minor children you will get $700 for yourself and $100 for each child a month in three separate payments. However, this does not mean the children will get MEDICARE. That's a whole different ballpark. Carmen

For me, I just had to lower my standards- especially, re housekeeping. I do maintenance housework only- daily dishes, light picking up, etc but overall, we live in a mess. And I'm okay with that- I cannot physically scrub and do heavy cleaning and I am not going to waste precious energy on housework. My husband, God bless his soul has taken over the laundry, and the kids will scrub a bathroom sink occasionally. I keep meal preparation as simple as I can- we eat out of a lot of boxes and cans- and that too, is okay. I have certain money earmarked for times I can't even open cans and dump- those nights are delivery nights. And again, that's okay. Save your energy for what matters- your boys. Meals and clean carpets are not worth the energy. Lower the standards- seriously. I had to let my Martha Stewart complex rest- and I am a much happier person. Hope this helps, Carmen

Congratulations- how exciting!

Ernie, First, thank you for feeling comfortable with sharing this- it must be incredibly hard to have to acknowledge on a forum what happened. I cannot fathom the reaction of the hospital and the police- rape is not taboo, it is a crime- and the sadistic coward that took advantage of you needs to be punished. Furthermore, he needs to be removed from the environment where he can continue to abuse. Chances are very high that you were not the first nor last person he has done this too- and chances are very good that other victims were/are nonverbal and defenseless. Scream, Ernie. Honestly, do not stop until someone listens to you. Have you told the research practitioner? The hospital is liable for this and I would threaten lawsuits- media coverage- whatever it takes to make them realize you are coherent, sane, and not going to let this be brushed aside. You have your family that believes you- we believe you- take care of yourself but don't let this rest. You deserve to have some type of acknowledgment of what happened- be it through the judicial system and/or hospital. Don't be a silent victim- you aren't silent anymore- scream. Carmen

Nina, I'm so sorry to hear this- you all will certainly be in my prayers. Carmen

Hi, I get frequent (Several times a week) headaches similar to what you described. I also have a terrible time with complicated migraines. Per my doctor's orders- I take Imitrex nasal spray(20 mg) or pill (100mg). I typically only take the pill if I am somewhere I can rest for several hours as it makes me drowsy. I also pair the Imitrex with two Esgic -Plus pills(Prescription megadose caffeine pills). This tx consistently helps the pain but I have yet found something to keep the headaches at bay. I don't know why I have had such an increase in them over the pst year or so, but I certainly have and I do think part of it is indeed orthostatic related. I am so sorry you are dealing with these- they are terrible. I hope you are able to found a tx that manages them ASAP. Hang in there- Carmen

Hi, Ann. Some of us do have pacers- including myself, and did not require ablation. My pacer was implanted as a last resort to try to help with the bradycardia I get at night- bradycardia as opposed to dealing with tachy (which I also have but the pacer only helps the brady) . So, it really is an individual thing- it certainly is not an end-all be- all solution. The biggest effect for me is my mornings are much easier- still rough but nothing like they were pre-pacer. The pacer was something my doctor and I discussed heavily for a year before finally deciding to go for it- and again, as a last resort. So, it is not a typical solution but it IS a solution for some. Hope this helps, Carmen

Absolutely. My body goes nuts a day or two before the weather turns bad- I can definitely tell a difference. Living in Florida during an active hurricane season has been especially fun Carmen

Dysautonomia is a strange, funny word to describe an even stranger disorder. It is complicated even for those of us that live with it day in and day out to understand. Sometimes, when people do not understand something it is easier to just dismiss it. If they don't understand it- it doesn't exist. I know this sounds simplistic. With your parents, it may be easier for them to accept the fact this disorder "doesn't exist" than to accept the fact their daughter is very sick and there really isn't a lot anyone can do about it. It's a loss of control. By saying it is "psychological" and something you have brought on yourself- they are putting you in control. You can just stop all this and be well- problem solved. To be honest, the reality may just be too much for your parents. I know my mother has really had a time dealing with this- initially, she too blamed "stress" and then when she realized it wasn't stress, she had to deal with the fact there really wasn't anything she could do to fix it. That is a hard thing for some parents. Parents that like to "fix" their kids' problems can really have a hard time with disorders like this- again, it's a control issue. So, even though your parents may never admit to this--this might be part of the issue. What you need to do, is to come to acceptance that your parents just do not understand and may not ever- take care of yourself the best that you can. You can really do a lot of emotional and physical damage to yourself trying to make loved ones understand something they are not ready to understand. Carmen

It is a possible there is a physiological reason for the temporary personality change- a drastic swing in blood pressure, pulse, or even an interruption in oxygen might contribute. In fact, one of the symptoms of stroke is a sudden change in personality. So, I don't think you are way off base here. I know I have extreme irritability before a migraine hits- before the pain, even. If you continue to have concerns- address it with your physician again. Carmen

What a great picture Glad you were able to get out and have some fun Carmen

I have been hesitant to post much lately because I have had a rare and wonderful span of good days. With just an occasional migraine (managed by a heavy arsenol of drugs) I have done unbelievably well over the past few weeks. Well...... just when I dared to think things might be in a "remission state" (yeah, right)- she's ba-aaack!!!! I really think it's because of the weather- we have the Tropical Storm lurking about and I think the drop in pressure has kicked Ms. Dysy Nomy into overdrive. Translation: I feel like I've been hit by a truck. I am doped up on drugs right now and the kids are home from school thanks to the weather. I know I'm griping but good grief, sometimes, I forget how much this really stinks, for a lack of a better word. Just wanting to vent to others who I know understand. But on the flip side, I hope I can encourage some of you who may be at the early part of your journey- you may get some really good stretches of mild symptoms so hang in there. Really, the past few weeks I had been feeling better than I had in YEARS. But, today- not so much. Carmen

Goodness, Nina I'm sorry to hear this- your family will be in my thoughts. Take care of yourself. Carmen

Once again, I have to give accolades to my cardiologist. He is the one who diagnosed me nearly six years ago. In fact, I now travel six hours to see him- he is that good. The thing about him is he took the time to LEARN about dysautonomia(in fact he has some autonomic dysfunction himself) and has tried some non-conventional treatments with me. At one point I was on daily iv therapy (at home) which back then was just really starting to be used to that degree. After trying different treatments for a year or so, he ordered a pacemaker for me. Again, back then (we're talking just a few years ago- this is how much things have changed) that was an aggressive treatment. He has consistently pushed the envelope- not in a risk taking way but in a way that let me know he was willing to think outside of the box. He pushed me to apply for disability back then (I won), he just went over and beyond. Right now, I am enjoying a very good spell- knock on wood. But I will forever be indebted to my cardiologist- when I was at my absolute worst he never gave up on me and is still right there for me. He is awesome Carmen

I agree with the others and I'm sure that was unnerving. One thing I do is to say very sweetly, "Well, believe it or not I'm a heart patient." You don't have to explain anything to anyone but I have found that people usually become extremely apologetic once they realize appearances can be very deceiving. Carmen

I'll bring a basketful of sunglasses! I'll also chip in for a keg of Green Rain Gatorade- it's the only flavor I can stomache And lots of peanut butter crackers and chicken noodle soup and a case of Morton salt. Ha- this could be fun! Carmen

Woohoo- great news!!!!!!!!!!!!!!!

I just read this tonight- I am so sorry for all of you- it sounds terrifying. I'll be keeping your family in my thoughts- take care of yourself- Carmen

After reading up a little, it certainly sounds like peripheral neuropathy. Will bring it to my doc's attention when I go in for testing this week. Thanks- Carmen

Thanks, Nina. I have a quite a bit of testing coming up this next week in reference to my extreme increase in migraines (including brain imaging). It was just so bizarre to me ( and I have a pretty high threshold for weird symptoms). Carmen

On occasion, I will get the strangest- yet, painful feelings in various places and wonder if any of you have any idea why this is happening. Last night, I was in bed and it felt like someone had electricuted my big toe on my right foot. It was brutal and lasted for several minutes. It was extremely random and felt like the shock you feel from static electricity but it was prolonged. If I held my toe with my hand it subdued enough to be bearable, otherwise I continued yelping in pain. Seriously, what in the world is that? I have huge circulation issues (I have to wear socks at night even in 90 degree weather) and vascular problems in my legs (my veins are dysplastic, if that makes sense). I do have restless legs but I wasn't asleep when this happened. And why does it feel electric? It doesn't feel like a muscle pain it feels like an prolonged electric shock. I know this sounds crazy but dysautonomia isn't exactly known for it's run of the mill symptoms. Any thoughts? Carmen

Your family, and your brother's family will be in my prayers. I am so sorry they are having to go through so much. Carmen